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sublime311
08-09-2005, 01:41 PM
:D Inspired by a post in another forum, I wondered if there are others on CC with this disease.

I was diagnosed about 5 years ago. My TSH levels never really super high numbers (I think the highest was 18.9 or something), but I was having HORRIBLE symptoms including:

Fatigue/weakness - It was all I could do to get out of bed each day.
Weight gain or increased difficulty losing weight - yeah, the story of my life.
Hair loss - I have A LOAD of hair so to me this was REALLY noticable.
Constipation - uh... nuff said!
Depression - I thought the fatigue I was feeling was because I felt so down all the time.
Irritability - My middle name.
Memory loss - In mid-sentence I would forget what I was saying. I would just stray off. It was horrible. My concentration was completely wiped out.
Abnormal menstrual cycles - I had a period for SIX months straight! :eek:
Decreased libido - yeah, who wants to have sex when you have all this going on anyway.

About the only symptom I DIDN'T have was cold intolerance. I have a low body temp naturally so I am pretty much always hot. :rolleyes:

It wasn't my usual doc that diagnosed me. I was on phentermine for weightloss and as part of the lab work-up they did a TSH level and it went from there. Previously, I had discussed my abnormal cycle with my doc, but we both wrote it off to work stress. Duh.. It all made sense after the diagnosis and I read info about the disease.

I believe my disease was brought on by a direct injury to my thyroid when I was about 12. I was riding a friend's bike down a big ditch - when I got to the bottom, I hit a rock buried in the ground and one end of the handle bar was jammed against the front of my neck as I flew off the bike. HT does not run in my family and I didn't experience any of the other possible causes.

My TSH is usually in the high 3's, but would prefer to be closer to 1 - I just think I would feel better all around. Currently I'm on LEVOTHYROXINE 0.2MG (200MCG). When I first started I was on LEVOTHYROXINE 0.05MG (50MCG).. I think this is a clear indication of the diseases rapid progression. Anyway, my last reading was 3.59 which is within the high-end of normal.

Anyway, I would love for this thread to be a place to exchange support and information. I am by no means an expert, but have read a lot about it in order to educate myself about the disease and I've written a 15 page paper on the subject for school.

Look forward to hearing from others!

Neen
08-09-2005, 01:50 PM
I could have wrote what you just did!

I was diagnosed in Novemeber 04 and was started on .50 of synthroid. I had my levels recheched in December (they were ok) and again in March (again ok) but I still felt like crap. I went back to the doctor in July and my TSH was at 15.1. So she started me on .75 of synthroid. I'll go back on August 26th to have my levels tested again. I am feeling a little better after starting the new dose, but I know I still have a long way to go.

I started to supplement with 200 micrograms of Selenium. This is supposed to help with T3 production. I can tell a difference a little.

Ok, I'll type more later! It's time for me to go home!

saathei
08-09-2005, 02:38 PM
I've been hypothyroid for few years now. I also had a lot of the same symptoms - fatigue, depression, decreased libido, and an extreme sensitivity to cold (as in, shivering at 80 degrees :p). Oddly enough, my weight problems have been opposite of the norm - I have a hard time gaining weight; however, when my levels are off, my appetite is non-existent.

Right now I'm on 112mcg of Synthroid. It took more than a year of continual blood tests to get to that stable point, and I'm so glad we finally got it figured out! I was fortunate enough to have my levels stay normal (well, the high side of normal) throughout my pregnancy. I have a feeling they are a little bit off right now, but I'm also dealing with PPD, so who knows.

Not sure where it came from. It was rumored that my grandmother was diagnosed with hypothyroidism, but I'm the only one of her descendants to have it. :confused:

calliope_muses
08-09-2005, 08:03 PM
So glad someone started this thread! I was diagnosed (Hashimoto's) a little over 2 years ago. Current Synthroid is .15, and I'm trying (without much luck) to get my doc to supplement it with Cytomel. Autoimmune thyroid disease does run in my family, and those who have been treated with Cytomel in addition to Synthroid seem to feel much better. My dr doesn't seem to be buying into it though...

sublime311
08-09-2005, 08:10 PM
Hey ladies! Looks like it's just us for now. Do either of you know the difference between Synthroid and Levothroxine? That's one thing I never researched. I know Levothroxine is generic, but are we still basically taking the same hormone??

Neen - did you need an RX for Selenium or is it OTC?

Saathei - did you have trouble conceiving? We are desperate to conceive and just having the worst time with it. I know infertility is a symptom. Do you think your TSH levels are adding to the PPD? When will you have your levels checked again?

sublime311
08-09-2005, 08:13 PM
Autoimmune thyroid disease does run in my family, and those who have been treated with Cytomel in addition to Synthroid seem to feel much better. My dr doesn't seem to be buying into it though...

Ugh! I hate that! Why are they so unwilling?? Is changing docs an option? Are you already seeing an endocrinologist?

calliope_muses
08-09-2005, 09:28 PM
Ugh! I hate that! Why are they so unwilling?? Is changing docs an option? Are you already seeing an endocrinologist?

So far I've been to 3 GPs and an endocrinologist. The endo went so far as to laugh at the research I brought in and call it 'internet crap'. I really think the biggest problem I face is that even though I live in a metropolitan area (Oklahoma City), it's a small one. Doctors here aren't exactly cutting edge, and getting them to think and prescribe outside the box isn't an easy task. The closest 'big' city to me is Dallas. I've thought about checking out doctors there, but haven't the foggiest clue where to begin.

So, for now, I struggle. I'm ok most days. But every once in a while I have one of those days where simply raising my arms to wash my hair takes about every ounce of energy I have. I've tried explaining that to the doctor(s), but I keep getting the 'make sure you're getting enough rest and exercise and that you're eating right' lecture. Believe you me, getting enough rest is not a problem - all I want to do some days is sleep! And while I'm not the world's most strenuous exerciser, I do make a conscious effort to get an hour's worth of activity several times a week. May be yardwork, may be a walk around the neighborhood, may just consist of be-bopping around the house to music while I clean. And, I joined Weight Watchers 3 months ago in an effort to not only lose some weight but to get better nutrition in my diet too. I'm getting my 5 fruits/veggies in every day, I'm getting my 2 dairy servings in, and I'm sticking to leaner meats.

I feel like I'm doing my part - why can't they? One pill doesn't cure it all, and they need to be more understanding of that!

calliope_muses
08-09-2005, 09:30 PM
Hey ladies! Looks like it's just us for now. Do either of you know the difference between Synthroid and Levothroxine? That's one thing I never researched. I know Levothroxine is generic, but are we still basically taking the same hormone??

I think that's right. My basic understanding was that some of the 'filler' ingredients can be different. My dr told me that either was fine for me to take, but I needed to stick with whichever one I started. I guess if you switch midstream the different inactive components can affect how much thyroid hormone your body can absorb.

Anyone else know for sure?

calliope_muses
08-09-2005, 09:32 PM
Got to get myself to bed, but I wanted to drop off an excellent website first. Mary Shomon is a thyroid patient herself and has written several informational books on dealing with this disease. She also runs this site (http://thyroid.about.com/blthyroid.htm) at about.com. When I was first diagnosed I spent hours over there reading all the info I could wrap my brain around.

Good night all!

sublime311
08-09-2005, 09:45 PM
Got to get myself to bed, but I wanted to drop off an excellent website first. Mary Shomon is a thyroid patient herself and has written several informational books on dealing with this disease. She also runs this site (http://thyroid.about.com/blthyroid.htm) at about.com. When I was first diagnosed I spent hours over there reading all the info I could wrap my brain around.

Good night all!

Hey! That's funny you posted that! I was about to! I actually have Mary Shomon's book. She had a contest on her website to name the newsletter she sends out and I submitted "Ain't Life Gland" - she ended up naming her newsletter something else, but decided to use my title for her personal notes within the newsletter. Anyway, she sent me an autographed book for my troubles! :D The woman is a virtual treasure trove of thyroid disease information! I actually think her spot on about.com has a doctor locater. Maybe you can find someone in Dallas that way.

txssenorita
08-09-2005, 11:48 PM
Can I join? I'm hypo as well. Hypo and anemic.
Fatigue/weakness - Check
Weight gain or increased difficulty losing weight Check.
Hair loss Check. Constipation - EH, not so much, but sometimes.
Depression - CHECK, CHECK!
Irritability -CHECK!
Memory loss - Check
Abnormal menstrual cycles-This is actually the only normal thing about me.
Decreased libido - Not me.
Cold Intolerance-DEFINITELY!!

I started on .25 of Synthroid. 3 months later I was upped to .50. Today I started . 75mcgs of Synthroid. I don't see an endo just my reg family Dr.

I also had a REAALLY bad fall 3 years ago which I'm just now getting treated due to lack of insurance and my neurologist put me on Topamax which the major side effect is fatigue. Yeah, cuz I don't have enough of that. It's hard sometimes to get my family, or even my husband to understand what is going on with me. I just want to be normal again.

sublime311
08-10-2005, 06:46 AM
It's hard sometimes to get my family, or even my husband to understand what is going on with me. I just want to be normal again.
That is EXACTLY how I felt. Everything was just so out of whack and I couldn't get anyone to understand. Simply getting up the muster to pick-up the house was enough to send me to tears. All I wanted to do was sleep and be left alone. Thankfully, getting your TSH in order will alleviate many of those problems. It's hard to see the end of the tunnel now, but know that one day (you get the right level of hormone) you'll wake up and the clouds and fog will be gone. Have hope and take of yourself in the meantime.

Welcome!

calliope_muses
08-10-2005, 07:38 AM
It's hard sometimes to get my family, or even my husband to understand what is going on with me. I just want to be normal again.

I definitely feel your frustration here... I had the hardest time getting my family and hubby to understand that I'm not just 'tired' - there's actually something wrong that zaps my energy level. Someone from LiveJournal sent me the 'Spoon Theory', and I've forwarded it to everyone in my family. The lady who wrote it is dealing with Lupus rather than Thyroid disease, but the gist of the story is the same...

http://www.butyoudontlooksick.com/spoons.htm

Teresita
08-10-2005, 08:23 AM
I don't have hypothyroidism, but rather the opposite--hyperthyroidism (Grave's Disease). I was diagnosed a couple of years ago after I had RPL tests run after my 2nd miscarriage. I really feel for all of you. It's amazing how many aspects of your health and well being are tied into your thyroid, and sometimes it's hard for others who aren't dealing with it to understand.

I know my DH often wondered why I was always so tired and run-down, and then when I was finally diagnosed I actually had some friends comment on how it could be a good thing since it often makes people lose weight. :confused: Um, yeah, real healthy way to diet! Nevermind, that I gained weight when I was hyper.

Thankfully after a bit of searching I found a fabulous endocrinologist, and I have actually been in remission since I got pregnant (November 2003). The only negative I'm dealing with now is Graves Eye Disease (Thyroid Eye Disease), which progresses regardless of your thyroid levels. So I am constantly having eye issues.

kimthebride
08-10-2005, 08:34 AM
Your thread title made me laugh! :p

My SIL had surgery 2 weeks ago removing a "wing" of her thyroid and the associated goiter, she has Hashimoto. Her levels always appeared normal, even though she had the goiter.

We are anxiously awaiting the results of this surgery to see how it affects her symptoms (the ones you listed). This is such a complex disorder that can affect a multitude of aspects of your health. DH's whole family has thyroid issues, so we'll definitely have our son checked as he grows.

Here are some links that I found helpful in educating myself on her surgery and condition:

Thyroid
http://www.endocrineweb.com/thyroid.html

Goiter
http://www.endocrineweb.com/goiter.html

Hyperthyroidism
http://www.endocrineweb.com/hyper1.html

Surgery
http://www.endocrineweb.com/surthyroid.html


Take care of yourselves ladies! Great thread...

saathei
08-11-2005, 03:53 PM
Saathei - did you have trouble conceiving? We are desperate to conceive and just having the worst time with it. I know infertility is a symptom. Do you think your TSH levels are adding to the PPD? When will you have your levels checked again?

We had a very easy time conceiving; however, we made sure my levels were unchanging for 6 months before we started TTC. (The doc said we could start earlier, but I wanted to be TOTALLY sure it was under control.)

It's totally possible that my levels are adding to my PPD. I know that on days I do not take my pill, my PPD is significantly worse than it is on other days. I'm hoping to get my levels checked when I'm back at the doc on the 29th.

linda_loo
08-11-2005, 05:58 PM
I was dx with Hashimoto's, 6 months after my first child was born (November 2002). My first TSH test was 112!!!

Since then, I was treated by my endocrinologist - she saw me through my 2nd pregnancy and then told me to see my family doctor from then on. I have never been able to get either of those doctors to listen to me when I say that I don't feel good. They just tell me that I'm tired because I have 2 toddlers at home. Whatever.

Even though my TSH stays in normal ranges, I can go from feeling like this:
depression (may or may not be thyroid, I realize)
brittle nails
dry skin
hair falling out
can't get out of bed, so damn tired
constipation

to:
can't sleep at night
jumping
heart racing
etc.

Finally, I went to see a holistic MD for all of this, which was a couple weeks ago. It took 2 months to get the appointment (he is one of the ones that are raved about on Shoman's website), and I was feeling like shit when I made it. When I finally got to see him, I was feeling decent, but a little jumpy. He has me taking a pretty massive dose of Iodine, 3-12.5 mg tablets/day and a magnesium/potassium/calcium tablet (as well as a basic nutritional vitamin supplement). We talked a lot about iodine and magnesium problems with thyroid patients. I am only taking the 3 pills for 3-6 months, then back down to 1 tablet/day. That 12.5 mg is so much higher than the US RDA (which I think is around 150 mcg).

He also dropped my synthroid from 150 mcg to 125 mcg, both because I was feeling jumpy and because he felt I would need less with the iodine replacement. I have to say that I am feeling really good, and my nails are actually growing for the only non-pregnant time in my life!

I think it is a shame that so many doctors treat just based on the TSH results.

ramaba
08-11-2005, 08:08 PM
I was diagnosed in January of this year as hypothyroid after blood tests to determine why I only had 7 periods in 2004. It all started to make sense once I found out - fatigue, hair loss, the missed periods, not being able to lose weight because of the fatigue (leading to no exercise), but one thing REALLY stood out. My in-laws' basement heat was not working properly over Christmas and it was 80 degrees down there. I was absolutely freezing my butt off all night long.

I was put on 50 mcg of Synthroid with an adjustment to 75 mcg (insurance changed it to levothyroxine - gotta love insurance!) in March. My TSH normalized in May at 1.16 and I feel mostly normal again - I've had a period every month, not nearly as tired anymore (though I need more sleep than I used to - at least 8 hours - to make it through the day). Hair is starting to become lush again. I don't know if I have Hashimoto's or not - my endocrinologist hasn't been interested in checking that - I also see him for the type 2 diabetes that I was diagnosed with in March. Grrr.

However, this week I've started to notice my heart racing at times, though my pulse is normal. I'm wondering if I'm on too high of a dose of levothyroxine now - I've lost 32 lbs since diagnosis and 15 since the normal TSH in May. (Yep, exercising 3-5 times a week now - gotta do it with the diabetes.)

Neen
08-16-2005, 06:47 AM
Neen - did you need an RX for Selenium or is it OTC?

I got it OTC. It took alot of searching, but I finally found it at Wal-mart. It was about 3 bucks and I take one every night. I can say in the couple of weeks I've been taking it, I don't feel any worse and I can't tell if I really feel better. At least the brain fog is gone pretty much, but I'm still pretty tired all the time. I go have blood work next friday so we will see if this new level of synthroid is working!

calliope_muses
08-19-2005, 11:48 AM
Definitely time to ditch this Doc. My latest bloodwork shows my TSH to be 3.6. Her take is that the reading is 'fine' and she doesn't want to bump my meds since I'm still in the .5-5.0 range. She's afraid I'd get too low and become hyperthyroid. Everything I've read says that the range has been changed to .3-3.5, which would put me at the very high end of normal. Now, I'm sorry - I've been dealing with this long enough that I know when I feel good and when I'm starting to slide down the slope towards too much TSH. I feel like crap at this level. I'd like to try a month at the next dosage level and reevaluate. But will she listen? No - she's only concerned about the number on that paper. Come back in 6 months she tells me. When I was there 6 months ago my TSH had crept up a bit, and now it's done it again. Why is it so hard for her to accept that we could nip this in the bud?

{palm-forehead}

Next stop? A Dr. in Broken Arrow that the about.com thyroid site recommended. 2 hours away - gah!

Neen
08-26-2005, 07:33 AM
I just went and had a blood draw today to re-check my TSH levels. (they were 15.1 6 weeks ago). And the phelebotamist drew blood out of my wrist! Can you believe it?? She didn't even try the bend in my arm. I so wanted to smack her, but was I going to do?

Here's to hoping I have good levels!

Neen
08-30-2005, 01:18 PM
Well, the doc said it was still too high (don't know the number yet, they are mailing me the results) so they upped my meds to .88. Here's to hoping I will start to feel even better

Oh, and my wrist is STILL burised and I think it's getting worse!

txssenorita
08-30-2005, 02:06 PM
Hope that the increase in meds is going to be the right one for ya. I have to go get tested in October again. Such a horrible cycle! :(

mandersald
08-31-2005, 05:34 AM
i'm so glad i found this thread! i have just been going through some thyroid issues.

i first was diagnosed with hypothyroidism when i was 18. whenever i do any reading up on thyroid stuff, i always hate the part where they say that it usually comes for people in their 40s. yeah right! my family has a large history of thyroid disease, and its notlike i hurt myself when i was younger. anyways, i started at 0.5 mg of synthryoid, and was pretty stable through college on this dose.

when i was 21, i went in for a routine checkup, and they noticed a lump on my thyroid. they call it a thyroid nodule. i had an ultrasound and biopsy done on the nodule, and its about an inch in diameter, but benign. (phew!). my endo keeps tabs on this with an ultrasound every year, and the nodule hasn't changed. after i found out about the nodule, my tsh levels went crazy, and i was diagnosed with hashimotos. i am now on .16 mg of snthyroid. for the past year, things have been pretty good, but lately i have been having some discomfort in my neck, and call me crazy, but my thyroid aches from time to time.

i went to my doc yesterday and she said that my whole entire gland was swollen, and that the increased pressure in my neck could be causing the discomfort. anyways, she thinks that my thyroid is in its last hoorah to try to produce thyroid hormone before its going to give up completely. just a theroy though. i have an ultrasound next week, and a follow up appt with my endo at the end of sept.

so, that's where i stand. last time i got my tsh tested, it was pretty low (<1) but i wasn't feeling any symptoms of hyperthyroidism. my symptoms are usually pretty mild in general. it just sucks to have such a disfunctional organ. well, that's my history. i'm glad i found you gals for support. i'm a little anxious about this new developement of swollen glands, what this means for when i'm TTC, and for the future...(sigh)

hope everyone is feeling better after blood tests and changed meds!

its so hard when the doc says you're fine even though you know you aren't. hope that works out for everyone!!

sublime311
04-04-2006, 05:59 AM
I don't remember if I had a racing heartbeat. Are you taking any other meds that may be causing high blood pressure? I've never heard of levothyroxine causing these problems. I would call your docs office and see if they can get you in sooner given your symptoms.

calliope_muses
04-04-2006, 06:41 AM
It could be that your Levo dosage is a bit too high. That happened to me a couple of years ago when the doc bumped me to a higher dosage. She wasn't too worried about it - she left me at the higher amount because she really felt like it was correct. She told me if I experienced an increase in the symptoms or any pain whatsoever to call her immediately.

I also visited a cardiologist last spring because I was having heart palpitations and difficulty catching my breath. He did an echocardiogram to rule out anything serious and determined that I have a perfectly healthy heart. He told me that fluctuations in T3 levels can cause palpitations sometimes, but it's nothing to be terribly worried about. He also said that a lot of things can affect those levels - stress, hormones, even over-indulging in certain kinds of foods.

Call your doctor and discuss your symptoms - it's always best to err on the side of caution where your health is concerned.

jellybeany
04-04-2006, 07:38 AM
I just diagnosed with hypothyroidism last week. My symptoms started about a year ago - weight gain, fatigue, dry skin, depression, wacky menstrual cycles, irritability. My doctor ran the blood work and all of my levels were borderline. He said at that time he couldn't give me any meds because my body had not made up its mind. Over the year my levels bounced but always stayed borderline. Last week my T4 fell and I started on 50 mcg of levothyroxine over the weekend. I have to go for more tests in 2 months to see if this is the right amount or not.

I can't wait to feel normal again and actually have some energy to do stuff again.

ETA - My mom was also diagnosed with hypothyroidism about 6 years ago. She was really bad before they started her meds. She could barely get out of bed most days - but she refused to see a doctor. Finally when she went they diagnosed her right away and put her on 125 mcg of Synthroid. She is a totally different person now. Knowing its in my family the other reason (besides all of the symptoms) that my doctor has kept such an eye on it over the past year.

risa00
04-06-2006, 11:26 PM
Me too! I discovered it when I was in 6th grade. I always throw the doctors for a loop when I tell them that. I just remember coming home from school and taking a nap at 3:30 pm. My mom would tell me it was dinner time around 7 pm or so, but I would just sleep through it and wouldn't wake up until 6:30 am. Obviously she had me checked out and that's when it was discovered. No clue what my TSH is or what dosage I take. I just went in today to get it checked. I always seem to continue to go up and down a little each time it's checked. It's funny because my grandma discovered she has it a few years ago and my mom discovered it recently. You would think it would have been the opposite direction.

We're looking at trying to have a baby this year and I am a little concerned with it. I know the level has to be within some specific range otherwise you won't be able to get pregnant. Anyone know any more on this?

sublime311
04-07-2006, 05:56 AM
Hypothyroidism definitely effects fertility - having the disease under control improves your chances, but I've never heard of a specific number. But it would be interesting to know if there is a magical number - I have been trying to get pregnant since 01/04.

sublime311
04-07-2006, 05:57 AM
I can't wait to feel normal again and actually have some energy to do stuff again.


Have faith that you will feel better again!

Nanner
04-07-2006, 06:00 AM
Hi, all! I, too, am hypothyroid--I was diagnosed about 2 years ago. I had the following symptoms:

Fatigue/weakness - Absolutely
Weight gain or increased difficulty losing weight--I had weight gain, but could lose it pretty easily if I put the effort into it. So I don't think it was thyroid related.
Hair loss - Yep
Constipation - not really
Depression - Yep
Irritability - Yep
Memory loss - Yep
Abnormal menstrual cycles - not really
Decreased libido - Yep
Cold Intolerance - Yes, but I've always been that way

I actually had my TSH tested many times, and it always came back "normal." A friend of mine had done some research for herself, and told me that "normal" means different things to different doctors, and if I really thought I had a problem to go to an endocrinologist and get a TRH test. I did, and even though my TSH still appeared relatively normal, the TRH showed that I was indeed hypothyroid. I've been on Synthroid ever since, and after one little alteration in doseage, I've been holding steady, even throughout my pregnancy.

The interesting thing, though, is that I expected my memory loss and "brain cloud" to get better, and it just didn't. I couldn't figure it out. Then my sister was diagnosed with adult ADD. I thought it couldn't hurt to get tested for it, and sure enough, I was diagnosed as well. So I've been on meds for a couple of weeks now, and I am feeling SO much better. My thought processes are so much clearer, and I don't find myself struggling to remember a word like "screwdriver." :rolleyes: I'm sure many of you can relate to that!

IrisHope
04-07-2006, 06:04 AM
Two of my best friends chidren congential hypothyroidism. They are both on synthroid. These are two different friends with their daughters both having it.

mandersald
04-10-2006, 07:10 AM
risa
being hypothyroid and pregnancy is in fact an issue. although, my endo says that if you are being properly treated for hypo and your tsh and t4 levels are within your normal range, that there should be no reason to worry about ttc. we concieved in our first cycle of trying!!

there is an added risk, however, when you indeed become pregnant. if you are too hypo especially during the first trimester, there is risk for developmental problems, and increased risk of mc. most endos and/or obs will more closely monitor your hormones during pregnancy (like every month) to make sure that you and your baby are getting the right about of hormones. also, babies that are born hypothyroid need special care, and most times babies are checked for thryoid problems when they're newborns. postpartum is also a time for close monitoring as some women develop thryoid problems after birth even if they didn't have problems before.

i guess the main message is to make sure that you are closely monitored and are taking the right dosage of synthroid or whatever to make sure that you are in the normal range. mind you that the normal range depends on the person. just talk to your doc, and hopefully it will all fall into place.

good luck!!

Yolanda
04-10-2006, 11:58 AM
I was diagnosed just about 3 months ago as hypothyroid. I am currently on 50 mcg of Levothroxin (sp?). I had every symptom listed except cold intolerance.

I finally have energy!! That was my biggest complaint...my husband thought I was just lazy:mad:

I get my levels checked again in the next week or so, I need to make the appointment.

Also, we have been TTC for a year now. My cycles have started to get more regular since starting the meds, so hopefully it will happen soon.

Oh, and I don't think my hypothyroid is hereditary:rolleyes:

JJP
04-20-2006, 07:24 AM
Hi everyone! I'm so glad to find this group. I have Grave's disease, so my symptoms are a little different. I was treated in October of 2003 with radioactive iodine, so technically now I am hypothyroid. The reality: my levels have bounced up and down so much that I've experienced both sets of symptoms. Yay. :rolleyes: Also, we've been TTC for a year now with no luck. I was tested recently and had low progesterone on my 7 dpo test and my Ob/gyn thinks my unstable thyroid might be to blame.

Fatigue/hyperactivity - Yep
Weight gain or increased difficulty losing weight--I gained 10 lbs after my treatment, and it won't budge
Hair loss - no
Diarhea - at least twice a week
Depression - Sometimes, but with yo-yoing thyroid levels and infertility, it's not that suprising
Irritability - Yep
Memory loss - Yep
Abnormal menstrual cycles - Yep, I may not be ovulating at all
Decreased libido - Yep
Heat Intolerance - Yep, I feel like I'm always overheated and sweaty, yuck!

usafwife
06-15-2006, 07:22 PM
Hello ladies. I was diagnosed with hyperthyroidism after my first child was born. Of course it took a few months for them to finally tell us that was what it was. I had HEAVY bleeding (and I do mean heavy) for wks on end (that was said to be my cycles restarting....well after a couple of months of dealing with that I said it wasn't/couldn't be normal and wouldn't stop until they figured out what the problem was). I was beyond tired. I could sleep most everyday for many hours if my DC would have let me. My hair kept falling out in handfuls (granted I had a nice amount but still I felt like if it continued I wasn't going to have any hair left....I had an episode of that a few years ago and was tested because I had other thyroid problem symptoms but my TSH came back out). I had other symptoms as well.

One doc wanted to put me on one med but after doing some research on it I wasn't too keen on taking it considering we wanted to have at least another baby. So I didn't go back to that doctor (I had other things that I wasn't too keen on about him either...things that went on during my visits (i.e. not knowing why I was there....hello, read the letters my OB sent, my lab values and you'll figure out why I'm here). My family doctor diagnosed me as having a fairly noticable groiter. I was put on PTU. My TSH was pretty much non-existent during those months (to the point where it wouldn't even show up on the results).

We had talked with my doctor about the possibility of my disease leading to hypothyroidism at a point down the road. Well, that's where we are now. Granted my levels aren't off the charts but they on the high side. So now I'm taking Synthroid now. I've been told that I'll be followed more closely (which I new following my last pregnancy that I would be more closely monitored during future pregnancies). I've already been warned that I'm at an increased risk of m/c (which I knew about as well) as well as at risk for other problems down the road.

I always had a feeling that I'd develop hypothyroidism at some point during my life given the fact that my mom has had it for several years. My aunt (my mom's sister) was diagnosed with it a few years ago as well. My mom remembers my grandma having some thyroid problems but never really knowing the entire story with it.

linda_loo
06-17-2006, 10:01 AM
usawife - sorry about the thyroid dx... that's when mine hit too, after my first child. Hope you start feeling better soon, I remember how hard it was to deal with the normal tiredness of haivng a baby + that of my hypo symptoms. It was tough for me.

I'm trying to remember... I think I had blood tests every 8-10 weeks during my 2nd pregnancy.

jellybeany
06-19-2006, 06:07 AM
I went for my first round of blood work since I started my meds and my levels still aren't where my doctor wants them. I talked to the nurse and she didn't give me the actual numbers but my doctor upped my levothyroxine from 50 to 75. I've been on the 75 for almost 2 weeks now. I'm starting to feel better and its great to be able to do normal things like go grocery shopping without being exhausted. Now I'm hoping to get my butt in gear and get this weight off that I put on.

Pookie
06-20-2006, 01:24 AM
JJP and Yolanda Just wanted to stop by and say I can sympathize about TTC with no luck and thryoid problems. I've had hypo/ Hashimoto's since I was a teenage. Almost everyone in my mom's family does as well. We TTC for over a year before I found a good endo. My advice would be to find a good endocrinologist if you haven't already. Best of luck to you.
Usafwife I'm aware of m/c rates initially being slighly higher for those with thyroid problems in the first trimester, but I hadn't heard of other problems? Would you mind listing them? I was only considered high risk because of PIH/ getting pre-eclampsia, but not my thyroid.
General ?Now that my thyroid is under control, I'm wondering if I have too many docs since I have my endo and family dr. Of course my endo is best to control everthing, but at the same time I kind of feel like it's a waste of an appt since they can both check my levels and prescribe my Synthroid. I see my endo yearly except for when I was pg, then I saw him about every 6 weeks to 3 months depending on how things were going. I guess I should also add that we don't plan to TTC #2 until at least this spring. Do you have both or just 1 dr?

sublime311
06-20-2006, 06:05 AM
Pookie, I just see my regular doc for my thyroid-related problems. I saw an endo once because I thought he would magically make me better, but I realized that all he was going to do was order blood work and prescribe my meds. I would rather see my regular doc for that.

CindyM
06-20-2006, 01:16 PM
Well, it is such a conicidence that I found this thread - I have my appointment on this Thursday at 2 pm. I haven't been diagnosed with anything yet - but my mom said this runs in the family and she was the one that suggested that I get checked out. Here are my symptoms:

Fatigue/weakness - Absolutely
Weight gain or increased difficulty losing weight--Definently
Hair loss - No - actually I have been growing MORE hair.
Constipation - Yes
Depression - Yes
Irritability - Yes
Memory loss - Yes
Abnormal menstrual cycles - Well I have been on the pill for 5 years but for the last couple of cycles on it I noticed that it was almost going away. Now I am TTA and they are getting back to normal
Decreased libido - Yes, unfortunantely
Cold Intolerance - Yes, I call my husband my heater because he is always having to heat some part of my body up. If it were up to me we could have it hot in our house. When I get home and it is 78, I have to sit under a blanket because I am so cold.

I hope this doctor can help - I haven't felt right about myself for a few years, I might have one good day here or there, but I have no motivation to clean, exercise, put up clothes. If I could I would sleep all of the time. I just hope that the Dr. gives me some news that explains why I feel this way.

usafwife
06-24-2006, 08:28 AM
Linda ~ Thanks. I wish it hadn't taken them so long to finally figure out what the problem was following the birth of my DD. But I'm greatful that they did figure it out and now we know what was causing all the problems. I so exhausted that all I wanted to do was sleep everyday but I couldn't do that with a newborn to take care of. I'm dealing with the exhaustion again to the point where all I want to do is sleep. I certainly do not remember it being this way during the first trimester with my DD (but of course I didn't have a 1 year old to take care and I was sick beyond words). My OB said I'd have repeat bloodwork six weeks from when I started the meds. Not sure what the repeat bloodwork schedule will be after that. One woman told me I needed to have it drawn every month during pregnancy.

jellybeany ~ I hope the new level of the meds is just what you need. I can relate to the exhaustion comments. Hope you start feeling more like your old self very soon. I'd like to start excerising as well but I simply do not have the energy to do it just yet.

Pookie ~ I was told I was at a much higher risk for miscarriage because my thyroid problems (I knew this before we got pregnant with #2) but since my levels aren't under control I'm in the even higher risk for it to happen. Also since my levels aren't under control I'm at risk for pre-eclampsia, placenta abruption, placenta previa, IUGR. Hopefully by the time I'm at the point where those things might be a problem it will be controlled but it took several months to get it controlled the last time (when I was hyperthyroid).

At first I was referred to an internist but things didn't work out with him (didn't like attitude/manner, and the meds he wanted weren't a good choice for me since we wanted to have more children in the near future) so I made an appointment with my family doctor. He's been the one keeping an eye on it until now. Now my OB will keep an eye on it. I'll see a specialist if she wants me to but otherwise I'm happy with where I'm at.

Cindy ~ I hope they were able to determine what your problem was at your appointment. Good luck.

sublime311
06-24-2006, 08:36 AM
Hey ladies! I posted this in my journal, but thought I would xpost here, too, because I think it's something we all need to look out for.


I discovered this week, that my doc accidently LOWERED my dose of thyroid hormore instead of INCREASING it. I was supposed to get 250mcg and instead received 25mcgs. The whole reason I went to see her was because I was feeling sluggish and not well. We checked my levels and found I was a little high so she said we would increase my dose. Anyway, I ended up taking the lower dose for about 3 weeks and noticed that I was feeling foggy brained, fatigued, etc,. I checked the Walgreen's website (my RX history) and found the error. I can't believe that the pharmacy didn't take note of my drastic drop in mcg's. I know people change their dosage all the time, but usually it's to increase, not DRAMATICALLY decrease. Once your thyroid stops workings effectively it will NEVER improve. This is a lifelong progressive disease.

What if I didn't notice and just continued on the lower dose for 3 months until my next level check!? I don't have time to feel sick!! I'm thankful I caught this only 3 weeks after I started the lower dose.

Be careful, girls! Watch your prescriptions/dosage! Be in charge of your health.

sublime311
06-24-2006, 08:42 AM
Q: Has thryoid disease negatively effected your libido?

I don't know if it's just that I'm not feeling good about myself (extra weight) or if it's actually my thyroid, but I went from being very active to only "giving in" once in a while when DH asks for it. I feel so bad for it, but I can't help it - I have no desire right now! I'm hoping this increased dose will get me back into the flow of things!

Anybody else feeling like this?

jellybeany
06-24-2006, 11:00 AM
What if I didn't notice and just continued on the lower dose for 3 months until my next level check!? I don't have time to feel sick!! I'm thankful I caught this only 3 weeks after I started the lower dose.

Omg - thats crazy! I'm so glad you caught the mistake early! Thanks for the warning. I've started always checking my meds when I leave the pharmacy because they gave me the wrong BCP once.

Hope you start feeling better again!

TriSigmaNC
07-15-2006, 06:43 PM
Another hypo here. I was diagnosed at 17 and am currently 31 on 75 of synthroid. I'm not freaky granola, but let me be honest with a few things that truly naturally make you feel better. A good healthy eating regimen, a consistent sleeping schedule and regular exercise. Colorful veggies and fruits too. The only major symptoms that I still deal with are tiredness in the am and dry nails.

I am concerned about TTC in the future, especially since we're waiting about 5 or so years. But we'll get to that when it's time.

Katy
09-02-2006, 03:28 PM
Well, I went to the doctor a couple weeks back for my annual and we decided to check my thyroid while there. I gained quite a bit of weight this year (and yes, my eating habits had a LOT to do with it), my doc agreed and added that she thought that I just had a pretty tough year.

I'm pretty lucky that I have such a great doctor. She actually listens to what you say. I found out later, that she probably went along with the thyroid test because of the other symptoms I was bringing to her attention.

I'm pretty borderline (as I've been told in the past). My TSH is 4.02, my Free T4 is .64, and my Free T3 is 3.27. She was also concerned that my B12 and my Folate were low. She put me on Synthroid 0.25mg.

I had the following symptoms:
* Fatigue (throughout different periods of my life, I'd be able to sleep 8+ hours at night, take a 1-3 hour nap midday, and still go to bed a couple hours later - when I taught, I always had to nap after I got home)
* Weight gain or increased difficulty losing weight (but again, this past year+ I've had some pretty horrible eating habits)
* Depression (not outright depression, but I definitely had some extended periods of funk)
* Irritability (like the depression its kind of come and go)
* Memory loss (this mushy brain stuff was driving me insane - I couldn't focus on anything, and could rarely remember a basic word)
* Abnormal menstrual cycles (not now, but in my late teens and early 20's I'd go months without a period and why my thyroid was originally checked about 10 or so years ago)
* Decreased libido (not something that I'd put a name to, but it's something that I've always wondered about)
* Cold Intolerance (as long as I can remember, I've always had cold hands, feet, ears and nose)

Other Symptoms (that I happened to mention to my doctor):
* tingles in my hands and feet (I suggested that it might be poor circulation and she assured me, it was not and that my circulation was fine)
* a consistent lump in the back of my throat (think post-nasal drip, but not - made exercising/breathing difficult and sleep was accompanied with snoring and occasional apnea depending on the size of my lump)
* moments of dizziness and lightheadedness (in particular when I would lie down in bed to read or talk on the phone)

I have high hopes for my Synthroid. And thanks for the mention of the Mary Shomon book. I read the entire book between the time when my doc called to tell me and when she could see me back at the office. It helped things to make more sense.

Okay, I'm done rambling now.

txssenorita
09-02-2006, 05:59 PM
I hope the synthroid works for ya. I've been off meds for months and feel like blah! My primary care Dr. went out of practice and I have yet to find a Dr. I finally just called an Endochrinologist and made an apt. I'm so glad I didn't need a referral. I'm very excited about seeing a specialist. My Dr. would only test my TSH, this Dr. will be doing more tests. Part of my frustration was the way my Dr. would dose me. I was still having major symptoms and she would increase a little then test, increase then test. It was a horrible cycle for me.

Have any of ya'll checked out http://stopthethyroidmadness.com/ ? It's got some pretty interesting info.

calliope_muses
09-02-2006, 06:44 PM
Have any of ya'll checked out http://stopthethyroidmadness.com/ ? It's got some pretty interesting info.

That website describes me to a 'T'. I've been on Synthroid for 4 1/2 years now and I still feel like crap 90% of the time. Less crap than before I went on my meds, but still crap.

I'm going to follow their advice for finding a Doc - I've been at odds with mine for quite a while now. She's stuck on the lab results rather than taking the time to listen to how I feel.

Thanks for linking us to it!

jenji
09-07-2006, 04:40 AM
I was just diagnosed with Hashimoto's in May. went to an Endo shortly thereafter and have been on Synthroid (.05mg) since June. I also have a tumor on my pituitary making my prolactin levels high and as a result of the Synthroid and Cabergoline (for the prolactin) this week I finally ovulated for the first time since February!
as far as symptoms,
Fatigue/weakness - yep
Weight gain or increased difficulty losing weight - yep
Hair loss - yep
Constipation - not much
Depression - yep! so much so that I quit my job thinking it was the reason
Irritability - oh yeah
Memory loss - that is a HUGE understatement!
Abnormal menstrual cycles - yes, but mine was apparently due to the pituitary
Decreased libido - Not a lot
Cold Intolerance - That's my middle name! DH and people I worked with would use me as the thermometer, if I was comfortable, they knew something was definitely wrong with the A/C. I had a heater in my office year round.

I have a question... for those who experienced hair loss, did your hair come back after being on Synthroid? I used to have really thick hair so people think I'm crazy when I talk about my hair being thin, but to me it's SOOo noticeable, especially in the front.

Katy
12-27-2006, 12:26 AM
Do you guys remember while reading Thyroid info books (Mary Shomon's book in particular) anything about aging women and thyroid issues? My friend is describing her mom's current erratic behavior and I swear it sounding like something I've read before when doing my initial research.

Any symptoms or specifics from the book would be greatly appreciated. TIA!

jellybeany
12-27-2006, 05:50 AM
Before my mom got diagnosed her behavior took a complete turn. Most days she wouldn't get out of bed and if she did she was miserable and mean. I remember one instance when I was still living at home that she put her fist through my bedroom wall and that was nothing like her.

Katy
12-27-2006, 07:17 PM
wow Jelly, that's amazing. So now that she's on meds, is she back to "normal?" My friend's mom is turning into an absent minded pack rat (among other things).

sublime311
12-27-2006, 09:14 PM
Hey Katy - My book is still in a box in the garage, but I found this PDF brochure online (from thyroid.org):

http://www.thyroid.org/patients/brochures/ThyroidDisorderOlder_broch.pdf

Katy
12-27-2006, 09:50 PM
Kelli, that's all very helpful. I'll be sure to pass it on to my friend. Thanks!

As a side note - I'm feeling SO much better since being on my meds. One (among many) positive side effect I just noticed the other day is that I have longer, stronger nails...finally!!! Who knew!

jellybeany
12-28-2006, 05:45 AM
wow Jelly, that's amazing. So now that she's on meds, is she back to "normal?" My friend's mom is turning into an absent minded pack rat (among other things).

Yes completely normal again - she's happy and enjoying life now.

MrsWindmill
01-04-2007, 12:12 PM
Hi ladies!

I hope you don't mind me jumping in - but the symptoms listed in this thread have hit so close to home, it's not funny. I'm making an appointment to see my doctor next week! :o

sublime311
01-04-2007, 01:22 PM
Hi ladies!

I hope you don't mind me jumping in - but the symptoms listed in this thread have hit so close to home, it's not funny. I'm making an appointment to see my doctor next week! :o
I hope you don't have thyroid disease, but unfortunately the statistics are against you. :( Approx 1 in 20 or 4.78% people are currently undiagnosed (source (http://www.wrongdiagnosis.com/t/thyroid/stats.htm)). Please let us know what happens.

Hope you're feeling better soon!

SiValleySteph
01-04-2007, 03:44 PM
I'm afraid I'm falling right into the description - exhaustion, depression, irritability, dry skin, etc. At least one sister has been diagnosed with a thyroid issue and takes some sort of medication for it. (Obviously, I should get the details.)

Is this something that comes on at a certain time?

I certainly have been getting less sleep & less exercise since my son was born 2 years ago. It's only been in the last few months, though, that I have felt so bad. I know I should go into my dr. I hate getting blood taken though - I'm always the one who has to get put on the stretcher and get some fruit juice because I'm so dizzy.

Thanks for the info!

sublime311
01-04-2007, 04:24 PM
Steph, thyroid disease is progressive. I had a childhood neck injury that caused my disease and I did not begin displaying obvious symptoms until 20+ years later.

Here is some information about Post-Partum Thyroid Dysfunction (http://www.postpartum.net/thyroid.html).

Obviously, I'm all for you getting into the doc for some tests. Just think how much better you'll feel if you are diagnosed and can get on meds that can make you feel better.

SiValleySteph
01-04-2007, 04:55 PM
Kelli, Thanks so much for the info! Now I have to muster the energy to call my doctor.

LyLMyssChaos
01-04-2007, 07:12 PM
I have a quick question for you ladies. Did any of you have a thyroid blood test come back "fine" then later find out that you did in fact have a thyroid issue? I ask this because I am pretty convinced that I have a thyroid issue, but when my doctor did my blood test he said the only thing he noticed was that my iron was low, so he perscribed me an iron supplement. Everyone I talk to and tell my symptoms (irritability, restlessness, gaining 30 pounds in 4 months, being lethargic, hair falling out by fistfuls, confusion, constipation, carpal tunnel, muscle cramps,swollen face, difficulty producing breastmilk, intolerance for cold/heat, etc.) tells me that it sounds like a textbook diagnosis. Also, someone told me that untreated hypothyroidism can cause anemia. I have heard that there are two tests and that the secondary test is often overlooked, so I'm wondering if I should ask my doctor for the other test, or just get a second opinion?

jellybeany
01-05-2007, 05:51 AM
LMC ~ this happened to me. My levels came back "normal" but they were on the very low end. My doctor kept and eye on them hoping that they would move up. They dropped to the very lowest number on the "normal" scale and my symptoms were getting worse. What he told me is that normal wasn't actually normal for everyone and I fall into the percentage of people where the low end of normal is too low for me. I am now up to 125 mcg of Levothyroxine and feeling much better.

I definitely think its worth getting another test and second opinion. Good luck!

TriSigmaNC
01-05-2007, 08:07 AM
LMC
YES! I agree exactly with what jellybean stated. Get another opinion and keep aggressive with your own health on this matter. I've had many doctors take my tests while I know they'll come our perfectly fine as I was on my medication. Weird doctor. They do vary at different times of the day and the year for women.

Also, varies very much do change pre-and post-pregnancy.

usafwife
01-12-2007, 12:49 PM
I agree that if you aren't happy with what the one doctor says to find another one. In the three months after my DD was born I was exhausted beyond belief, I had SO much bleeding that I was basically in the house 24/7 when AF would arrive (and stay for about 2 wks - both were VERY unusual for me). I had to stay awake around the clock or set the alarm for every 2 hours or I'd have a major mess to clean up. Not fun.

I kept getting the "it's just your body getting back to normal after having a baby" speech. When it continued I pressed on. Finally they did a blood test and that's when I found out my levels were so low that they didn't even measure on the test. I was referred to another doctor but he was very scatterbrained that I never went back. He didn't even know why I was there for the appt even though my doctor had sent all my test results, wrote a letter, and included some of my records.

I made an appt with my family doctor to talk things over after the appt with Dr. scatterbrain. He agreed that the medicine he wanted to put me on wasn't what he would recommend (nor other docs) to women that wanted to have future children. I was on that until I saw my OB with this pregnancy and found out I was hypothyroid. We'd been told to expect that but didn't think it would happen within a matter of months. I've had my dosage increased more than once during this pregnancy.

cshaysharp
01-15-2007, 08:43 AM
Hi, I just wanted to say that I sympathize with all of you with thyroid issues. While I am hyperthyroid, not hypo, i have experienced many of the symptoms you have had and it is miserable.

Does anyone also have a goiter? (enlarged thyroid?). I have been to the endo, and he is telling me that because of the severity of which I have hyperthyroid (I have graves disease) and because of the size of my goiter, that thyroid meds will not be his desired course of treatment for me. I am looking at either RAI or surgury and really need to decide by Feb 1st. Anyone have any experience with either of those treatments? I am not thrilled with either! :o

Teresita
01-15-2007, 09:22 AM
cshaysharp I have Graves as well although I have thankfully been in remission since October 2003. I know that RAI is the chosen course of treatment by many endos, but I have to say that I don't really get why more aren't willing to try meds. After I was first diagnosed (Feb. 2002), I planned on RAI since that was what my endo wanted to do and it is the most common course of treatment. However, after researching it more I wasn;t comfortable with the potential side effects of RAI (worsening eye problems) as well as the fact that it would likely make me hypothyroid from then on.

I ended up switching endos and went on Tapazole (to which I had a horrible, though exceedingly rare allergy) and then PTU. After just a couple of months on PTU, my thyroid stabilized and I have been off meds and in the normal range for TSH, T4, and T3 since then. If you look at stats from Europe and Asia, where meds are used more often than in the US, remission rates are pretty good. I think it's worth a try. Good luck to you whatever you do, and feel free to either post or pm me if you have any questions about my treatment/experience.

cshaysharp
01-15-2007, 09:48 AM
Teresita - Thanks for posting your experience. Right now, I am on Methimazole (40 mg) as well as 120 mg of Inderal for my heart. I go back to the Endo on Feb 1st, and hopefully my T4 has gone down. From my understanding, he wants my levels to go down before going forward with treatment either way, but especially for surgury as I would be considered high risk for undergoing anesthesia (sp?). I have not at all ruled out trying meds for a while because I don't see how that could hurt. But my issue with it is that from everything I've read, it will not shrink my goiter. Now, people tell my it's not real noticable, and I'm not vain, but it bothers me... and it's noticable to ME! I just don't know what to do. Honestly, the RAI is probably my least favorite option. It just freaks me out!

ETA: I forgot to add that gaining weight is my other fear for these treatment options. This is so fun!

Teresita
01-15-2007, 10:21 AM
cshaysharp I'm sorry I forgot to even address your goiter question. I did have an enlarged thyroid when my Graves was active--but it wasn't as large as what you would see in a textbook image of a goiter. No one else besides my endo and me could really notice it, but it did go away once my levels got back to normal.

I honestly didn't research the goiter issue much since mine wasn;t notcieable. Do you know why it is that RAI and surgery can help a goiter but not meds? I would think that since all three cause your levels to adjust they would have a similar impact?

I know from experience how stressful it can be to try and decide on a course of treatment. RAI freaked me out too, but maybe someone who has had it will post to help reassure you? Good luck to you!

usafwife
01-15-2007, 10:46 AM
cshaysharp ~ Yes, I have a goiter. It's rather enlarged (to the point where you don't have to press at all to feel it). It causes me difficulty with eating certain things, always feels like there is something caught in my throat, etc. It really hasn't changed in size (other than maybe increase in size) over the past year and a half.

cshaysharp
01-15-2007, 10:47 AM
The only thing I've read is that the RAI actually KILLS the thyroid which makes it shrink, and surgury removes it so the goiter would be gone completely. Meds only suppresses the thyroid and it will help the swelling go down, but it doesn't shrink it much from what I've read. I don't know why really. :confused:

I've actually gotten to speak with several people who have had their thyroids removed all have had good experiences. I have not known anyone who has had the RAI though. I work with a girl that has been treating her hyperthyroid with meds for over a year and has been nothing but frustrated. Right now she is hypo from her meds and she is gaining weight by the second (her words.) She said they just can't get her stabalized and she did not start with severe hyper like I am. So I'm just really confused at this point. Just weighing the pros and cons best I can.

contos
01-17-2007, 03:58 PM
Hi, long time lurker of CC finally getting on board!

I was diagnosed with Graves in '99 and treated with RAI. I was only 19 at the time, and didn't look into any other options. Really, the way my doctor put it, it seemed like my only option. I should have researched more, but I have not had any negative issues with my treatment. Now, I am hypo and take levoxyl. My levels had to be adjusted quite a few times, but for the most part I was being treated by my regular GP for a while. When I got pregnant (I am about 8 months PP now) I was refered back to an endo to be under closer watch. I have not had any issues with weight gain, and my milk supply is good. I do have dry skin and fine hair, but I've always had those!

cshaysharp
01-18-2007, 06:50 AM
Thanks Contos, it's great to hear a success story using RAI treatment. Did you have to stay away from kids after your treatment? I have 2 young girls (1.5 and 3 year olds) and it would be very hard for me to be at the house with them and not hold them or anything. Plus my husband works second shift (3 to 11) and I would be there alone. I guess we could work something out though.

I wonder if your lack of weight gain could have something to do with your being much younger than I when you had the treatment. I am 34 right now and hope that doesn't make it harder for me to keep my weight off.

I still just don't know what to do yet. My goiter has really been bothering me lately. I feel like it's getting bigger inspite of being on meds right now. I guess I'll find out on Feb 1st....

contos
01-19-2007, 07:28 PM
The doctors didn't mention children specifically (probably because I was young and had none of my own) but I did have to stay away from close contact with people for a week. I also couldn't share a bathroom with anyone for that week. It would certainly be very difficult to do with young children.

Good luck with your decision, it's not an easy one to make.

cshaysharp
01-24-2007, 08:34 AM
Thanks Contos, I really appreciate hearing your experience. But I do think I have ruled out RAI. I just spoke with someone I work with that has graves. She had the RAI and said it didn't work and she is scheduled to have her thyroid removed in a month. :(

While a week long vacation without kids sounds really nice, it would be extremely difficult for me to not be around my kids for a week. I don't know who would take care of them!!!

Lanapoo
01-24-2007, 05:50 PM
cshaysharp - I have Graves Disease as well. I was diagnosed when I was 20 (29 now) but my endo wasn't the type to jump on the RAI bandwagon. I was treated with Tapazole, Propranalol (for my heart), and a type of steroids (because I had the eye problems). I eventually had surgery on my left eye to make it set back a little more since it protruded more than my right eye.

After a few years I was weaned off the tapazole and my thyroid has been working at a 'normal' level since then. 'Normal' is in quotes because I think that my thyroid has been supressed from the tapazole and is now too low. Unfortunately my levels are still in the normal range and my endo won't prescribe me any synthroid. Apparently (according to the dr) my body thinks that my Graves will kick in again so it doesn't want to let go of my fat. Lovely :rolleyes: My endo says eventually it will burn itself out and I will become Hypo and have to be on synthroid.

Even with my current troubles with being a little overweight, I'm glad that I didn't have the RAI and that my endo gave my thyroid a chance to go into remission and work on its own.

sublime311
01-24-2007, 05:57 PM
Hey, ya'll. Just an FYI that I'm going to PM a mod to have the name of this thread changed to "Thyroid Disease: Ain't Life Gland!"

trestlegirl
01-26-2007, 10:33 AM
Hi Ladies :) I'm subscribing!

I have papillary thyroid cancer and am having surgery on Wednesday to take the whole thing out. The funny thing is, I'm convinced that I have been subclinical hypothyroid for the past two years - I'm exhausted, always cold, hair falling out in clumps, skin and nails look like crap, can't keep weight off even though I run 30+ miles a week and eat very well. But my TSH was just over 4, so my PCP said I was fine and told me to get more sleep and exercise. Thanks :rolleyes: Both of my parents and most of my mom's side of the family are hypo, so it seemed inevitable that I would end up with hypothyroidism as well, but I certainly didn't expect it to come about this way!!

cshaysharp
01-31-2007, 12:29 PM
Trestlegirl - I'm thinking about you today. When your feeling up to it, let us know how your feeling.

trestlegirl
02-07-2007, 02:09 PM
Well, I am now thyroidless. The surgeon took out 8 lymphnodes too, and I had some trouble with my parathyroid function right after the surgery (low calcium = BAD!) but I am recovering pretty well now and feeling mostly back to normal other than the big bandage on my neck.

They started me on 100mcg of synthroid, which I started taking 4 days after the surgery. I guess it will take a few weeks before I can tell whether it's the right dose?

jenji
02-07-2007, 02:14 PM
question for those on Synthroid for hypothyroid: what doseage did you start out at? how often does your doseage increase?

I was diagnosed late last spring with Hashimoto's. I've been on 50mcg daily since then. My endo just upped my doseage to 75mcg. I'm just wondering what's average for doseage changes.
Also, do you generally have any symptoms that you notice when your doseage isn't sufficient, or do you just know by blood tests?

Sebski
02-20-2007, 01:55 PM
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melissafromnc
02-20-2007, 02:24 PM
I was on Armour before and am on Synthroid now. I actually prefer the Synthroid. I think many endocrinologists prefer Synthroid or one of the newer drugs because they are a bit more consistent. Armour is very very old school and I think it's make from dessicated pig's thyroids. It does contain both T3 and T4 but it can vary a bit from lot to lot as to potency. Some folks do better on Armour, some on Synthroid. Typically during pregnancy thyroid meds need to be increased. Has your doc done this?

Sebski
02-20-2007, 04:07 PM
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trestlegirl
02-20-2007, 06:16 PM
Has anyone here used Cytomel? I'm on synthroid now and am happy as a clam, but have to switch to cytomel for a while in preparation for my radiation treatment in April. My endocrinologist made it sound like some people have a hard time with the switch, so I'm curious whether anyone here has any experience with it!

Neen
02-23-2007, 01:44 PM
Cytomel is just T3 where the synthroid is only T4. Usually a doctor will add the cytomel to your synthroid and not take you off of T4 meds. They are 2 different hormones. (T3 is made when T4 is processed by our bodies). I would question why they are taking you off the T4 (synthroid).

usafwife
02-23-2007, 04:19 PM
question for those on Synthroid for hypothyroid: what doseage did you start out at? how often does your doseage increase?
I don't remember what my dosage was when I first started on Synthroid. My dosages were increased a few times during my pregnancy.

Also, do you generally have any symptoms that you notice when your doseage isn't sufficient, or do you just know by blood tests?
When we found out I knew something was wrong. I just wasn't feeling like myself, I had irregular (and very heavy) bleeding, extreme fatigue/exhaustion among other things. When we found out I was hypo I had some of the same symptoms (minus the irregular/heavy bleeding) again but I thought it was due to being pregnant. Each time I began feeling like that again my dosage was increased due to the levels not being where they needed to be.

Sebski ~ Haven't taken Armour just Synthroid. I lost a pregnancy due to my levels being out of whack as well (we didn't even know I was pregnant then found out and then had a m/c). My levels were almost 10 when we found we were pregnant this last time. My OB watched very closely because she was very concerned we were going to lose the pregnancy. I spent most of the first 14 wks having bleeding issues and on bedrest.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have my levels retested at my next appt. I'm pretty certain that my dosage is going to adjusted. I also hope that I don't get the same comments I got last time after my DD was born (that it was just my body getting back to normal after birth). I'm starting to feel the exact same way I did in the months following her birth. If my appt was not as soon I'd definitely be calling to see if they could check them earlier.

trestlegirl
02-26-2007, 02:38 PM
Cytomel is just T3 where the synthroid is only T4. Usually a doctor will add the cytomel to your synthroid and not take you off of T4 meds. They are 2 different hormones. (T3 is made when T4 is processed by our bodies). I would question why they are taking you off the T4 (synthroid).

I'm going off for treatment reasons - I have thyroid cancer and will be having radiation in April to (hopefully) kill anything that wasn't removed in surgery. I have to go off hormones completely so that my TSH will skyrocket and induce any little bits of thyroid that are left to start working and soak up the radioactive iodine. Not a process that I'm looking forward too, but because Cytomel has a much shorter half-life, it only takes ~10 days being off meds for TSH to get high enough, compared to ~30 days when going off Synthroid. So, I'm switching to Cytomel for a month, then after radiation I'll go back to Synthroid.

solongtogo
03-03-2007, 05:23 AM
Add me in too...I've been diagnosed for 4 or so years now. Is there another alternative to the daily pill popping, such as a shot or something? I have such a bad problem remembering to that that stupid pill.

jenji
03-03-2007, 06:40 AM
I don't know of any other alternatives. When do you take your pill? I keep mine next to my alarm with a bottle of water, so I just pop it before I get out of bed, then by the time I'm up and ready I can actually eat breakfast.

sublime311
03-03-2007, 09:03 AM
Q: What time do you take your pill? Have you changed and noticed a change in the effectiveness?

I usually take mine right before bed (along with my claritin). I've taken it in the morning also, but see no difference in effectiveness.

usafwife
03-03-2007, 12:58 PM
I take mine in the morning. I have to take it the first thing in the morning per my doctors orders.

jenji
03-03-2007, 01:59 PM
I take mine first thing in the morning and don't eat for an hour after. That's what both my doctor and pharmacist recommended.

jellybeany
03-04-2007, 07:59 AM
I take mine first thing in the morning and don't eat for an hour after. That's what both my doctor and pharmacist recommended.

Same here.

I met with my doctor again this past week and my T4 dropped again so now I'm up to 150 mcg of levothyroxine. I'm hoping this gets everything back in order. Its been almost a year since I was diagnosed.

linda_loo
03-08-2007, 10:59 AM
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Esq.
03-08-2007, 11:49 AM
Hi ladies. I am hoping that someone has some experience/advice for me.

I have Hashimotos. I have 2 different types of antibodies, one in the almost thousands, and the other in the two hundreds.

I was put on Armour, but got pregnant one month after going on it, so I have no real acccurate history of how the Armour affected me. While I was pregnant I started having an erratic hearbeat and was taken off of hte Armour and put on Synthroid. I changed Endos at that time too bc hte Cardiologist freaked me out about Armour and made me think my endo was crazy.

Now I am testing hyperthyroid but still feel like crap. I have lost a ton of hair (I actually have 2 bald spots), have 2 periods a month, really dry skin and can't lose a pound despite dieting and consistent exercise. My Endo has agreed not to decrease my synthroid dose in consideration of my symptoms.

In addition to all of this, apparently my parathryoid glands are enlarged and I have to have a calcium test. Supposedly this is not related to the Hashimotos.

I am starting to get depressed. It is really hard to keep trying to lose weight, look like a human being when you are going bald and have flaky dull skin.

I don't have time to feel tired, although I really really do. If I stop for one minute I feel like someone drugged me I am so tired.

Anyone experience these things?

Deorah
03-21-2007, 11:37 AM
I was diagnosed being hypothyroid after my second dd was born, I went through the hyper stage untreated as at the time I wasn't aware I was having any issues other than the weight loss which I honestly though was because of the diet I was on. When my hubby got out of the Army is when I swung into hypo that was back in 2002. Shortly after getting on medication for it we became pregnant with our third child Neeko..:) We've wanted to add one more addition to our family but sadly it's been 3 years this month of ttc our 4th child. My levels are between a 1 and a 2, and I feel pretty good! But unfortunatley no child is forthcoming and I'm going to be throwing in the towel as soon as my clomid prescription is used up. When My son was 7 months old I noticed one morning that my tongue was swollen up, I went to the doctor and he said lots of people have swollen tongues :eyeroll: I have to admit though he really listened to me and how I felt and upped my dosage whenever it was needed. We have since moved to TN and my new doc well she wanted to put me in the 3 range and I told her absoloutley NOT! I feel like a sleeping zombie literally at that range!!! So that's my story!


Fatigue/weakness - Definatley
Weight gain or increased difficulty losing weight - Oh yes I have terrible weight gain..:(
Hair loss - Oh Yes James says that I've shed enough hair to give us another chia pet! LOL
Constipation - Only occasionlly
Depression - No
Irritability - Not so much
Memory loss - Yes
Abnormal menstrual cycles - I only ever get one abnormal one a year
Decreased libido Nope I can honestly say that isn't an issue! ;)

jenji
03-21-2007, 12:27 PM
Deorah - where in TN are you? If you're in East TN in the greater Knoxville area, I have an endo that I really like if you want to find someone else

Deorah
03-21-2007, 12:33 PM
I'm only about an hour away from there and would LOVE to find another endo, there is one in Crossville but it's really hard to get into see him, since he's the only one in the great surrounding area. Thank you so much! :)

calliope_muses
03-23-2007, 05:13 PM
I switched doctors for my latest checkup and am SO happy thus far. He immediately put me on Cytomel as a supplement to my Synthroid and scheduled me for an ultrasound the next week. I had it on Tuesday and discovered that I have lumps/nodules on the right side of the gland. So, he upped my Cytomel and wants me back for another ultrasound in 6 weeks. He says he wants my TSH ~.3. I wanted to hug him when I heard that - previous doctors have been scared to let me drop below 1.5. Maybe I'll actually start to feel like a human again!

Sol
03-26-2007, 09:53 PM
I'm in a bit of the opposite situation, I think. I contacted my doctor because I had been told by someone at the ER (where I went for a completely unrelated reason, I got a bout of allergy to hair dye) that I looked like I had a goiter. So I mentioned it to my doctor during a checkup and she agreed, so I'm being tested for hypothyroidism. The thing is that I don't feel like I have any of the symptoms. Well, my hair does fall out a lot, and if I don't have a good shot of coffee in the morning I need a three hour nap in the afternoon, sometimes I have to fight back the tears and gloomy thoughts, but it's mostly when I'm PMSing. I don't really feel too excited at the thought of getting a diagnosis and being on meds for the rest of my life, at all. So now I'm just waiting for the results from the lab, coming in a couple days. I'm also being tested for cortisol levels, so all these gland-issues at the same time are freaking me out a bit.

jenji
03-27-2007, 03:28 AM
Sol - you'll be surprised how much better you feel after you get your thyroid levels regulated. I totally understand about not wanting to be on meds for the rest of your life. I hate the idea. I don't like taking any medicine at all, but once you notice the difference in the way you feel, you'll understand it's worth it.
good luck at the doctor!

Esq.
03-27-2007, 06:59 AM
For those of you on Cytomel...what is it for?

Does anyone prefer Armour to Synthroid? If so, why? I have been on both, but I was pregnant while I was on Armour. I am on Synthroid now, and it does not seem to be working for me.

I know that there seems to be a division in camps when it comes to Armour v. Synthroid. I just don't know which side to be on! :)

calliope_muses
03-27-2007, 05:43 PM
For those of you on Cytomel...what is it for?

This should help... from thyroid.about.com:

Levothyroxine/Synthetic T4

The vast majority of doctors prescribe the synthetic drug known as levothyroxine for thyroid hormone replacement. The most commonly known brand of levothyroxine is Synthroid.... Levothyroxine provides a synthetic version of one hormone, thyroxine, known as T4. Some people with hypothyroidism find that levothyroxine therapy is sufficient treatment for their hypothyroidism.


Liothyronine/Synthetic T3

Some doctors treat hypothyroidism using levothyroxine, plus an additional drug, liothyronine (brand name, Cytomel), or prescribe it in a time released compounded version. Liothyronine is a synthetic version of...T3, the active thyroid hormone in the body. In a person with normal health and thyroid function, the thyroid produces mainly T4 and some T3, and the T4 is converted to T3, which is then the active hormone used by the body's cells. Some doctors and endocrinologists use supplemental T3... There is still a belief by some practitioners that patients do not need T3, because they will convert T4 into the T3 the body needs. The alternative medical community believes that impaired conversion of T4 to T3 may create a deficiency in T3 that warrants direct T3 supplementation.


In English, the way I understand it is this: your body has to break Synthroid (T4) down into the components it needs to regulate and support body systems. One of the things it breaks Synthroid down into is T3. Some patients seem to have difficulty breaking Synthroid down into enough T3, so they can still feel symptoms of hypothyroidism. Doctors can prescribe Cytomel (lab made T3) to supplement what's not being broken down properly.

It took me a long time to get the whole path straight and really understand what was happening. I've never tried Armour, but I've heard really good things. I'm going to give the Synthroid + Cytomel combo a chance for 6 months or so. If I'm still not feeling right I'll ask for Armour.

FYI - I love these 2 sites for thryroid info:

www.thryoid-info.com
http://thyroid.about.com

They're both run by the same woman ( a fellow thyroid sufferer) and have answered a lot of my questions. :)

Esq.
03-27-2007, 07:15 PM
Thank you calliope muses! That information helped me tremendously.

Esq.
03-28-2007, 09:52 AM
Okay, well just a cursory overview of those sites lets me know that I need a better Endo. I am on my second as of right now, but no one has ever explained Hashimoto's to me, other than that it caused my hypothyroid symptoms. From what I have read today, cycling from hyper to hypo is characteristic of the disease, yet my current Endo is treating me as if I am hyperthyroid, period, which is so not the case. In fact, I don't really have any hyperthyroid symptoms, and she was puzzled by my multiple periods per month, inability to lose weight, etc., because they are not at all normal for someone who is hyperthyroid.

Well, it seems that it is normal for someone with Hashimoto's to test hyper occasionally (I think that being postpartum might contribute too...but that is just my opinion based on what many of you have stated here). If that is the case, why is she so confused?!?!?

I am really going to have to take control of this myself and be an advocate for my own care. I had been sitting back, bc I only got the diagnosis a month before I got pregnant. After I was pg, it was hard to tell what was the disease and what was just being pg. Now I need to read everything I can, come to understand this disease, and find a doctor who will get me back to feeling normal.

I feel so much better now that I am aware of these resources!

calliope_muses
03-28-2007, 04:46 PM
I feel so much better now that I am aware of these resources!

I'm glad I could help! Seriously, I can't even begin to describe how empowering those sites and Mary Shomon herself have been for me. I let my doctor, who admittedly didn't know enough about autoimmune thyroid disease, push me around and make me feel like I was overreacting for far too long. I let her make me feel like a whiney hypochondriac. After reading some of the info on those sites and realizing that I wasn't crazy I turned into a witch and demanded better treatment. When my GP couldn't give it I started looking for another Dr and didn't quit until I found one who would listen. And let me tell you - I've had doctors laugh at me, tell me to quit reading 'crap' on the internet, tell me that there was nothing they could do if my test results were 'normal', etc. Don't give up - you deserve to feel human again!

amychris03
04-05-2007, 09:41 AM
Could anyone offer me some insight? I am currently going through Fertility treatments, and my tested a bunch of stuff, including my thyroid level. They called and said that my thyroid was in the normal range (2.1) but that for fertility purposes they like to see it between 1 and 2 so she wanted to start me on Levothyroxine. This came as quite a shock because I've been going through fertility treatments on and off for years and this has never been a problem before. Why would it be all of a sudden, is it anything that I am doing differently? I obviously need to research it a bit, but with a toddler running around I dont have much time! Thanks!:)

Fenway
04-05-2007, 10:02 AM
I'm glad I found this thread. Maybe you girls can help. I have many of the symptoms.

Fatigue/weakness -yes
Weight gain or increased difficulty losing weight - always.
Hair loss - yes!!
Constipation - yes
Depression - on and off
Irritability - yes
Memory loss - yes
Decreased libido - yes

I recently had some bloodwork done, and all the results fall in the normal range, but on the low end of "normal." I'm wondering if I should make an appt with an endocrinologist.

Here are my lab results.
TSH 1.54
Free T4 .83
B12 365
Ferritin 39
Folate 12.7

Thyroglobulin autoantibodies 26 U/mL
Thyroid peroxidase autoantibodies 22 u/mL

Based on your experiences, do you think these results warrent an appt with an endocrinologist?

TIA!!

jellybeany
04-05-2007, 10:22 AM
lilydawg ~ I would look into getting an appointment. My levels were like yours - the lowest end of normal. My symtpoms kept getting worse. My doctor said that just because there is a normal range doesn't mean that works for everyone. Those "low end normal" ranges for me were too low for my body. I was diagnosed a year ago and I am up to 150 mcg of levothyroxine and we are still working on getting my levels into the mid-high normal range.

Fenway
04-12-2007, 11:15 AM
Thanks Jellybeany.
I made an appt with an Endo. The earliest appt I could get was June 18, but that will give me some time to do some research on my own.

Both my dad and SIL are RNs and they both read my blood work and said they thought everything looked fine. My dad actually laughed at me and made a joke about how I probably just want a pill to help me lose weight.

very discouraging. :(

Sol
04-12-2007, 11:35 AM
Well, my results came and my TSH levels are 1.3, which goes hand-in-hand with my lack of symptoms. Now the only thing that worries me is that my thyroid does look big, and my doctor did think I had a goiter. How could that be?

calliope_muses
04-12-2007, 06:24 PM
Both my dad and SIL are RNs and they both read my blood work and said they thought everything looked fine. My dad actually laughed at me and made a joke about how I probably just want a pill to help me lose weight. very discouraging. :(

This is what's so hard about thyroid disease, at least to me. 'Normal' is so subjective - but a lot of people in the medical field don't recognize that. Whatever you do, don't settle for being told you're normal. If you feel symptoms something's not right!

Katy
04-17-2007, 10:51 PM
Is everyone here going to an endo? I just see my regular doctor and get my levels checked every couple of months. I've already had an increase in my synthroid from .25 to .5 (I noticed the symptoms returning a bit). I'm wondering, if maybe being on this current script for a while, if I should maybe see an endo if we need to increase again (though I'm fine now).

jellybeany
04-18-2007, 04:52 AM
I see my regular doctor. I get blood work done every 2.5 months and see him every 3 months right now.

sublime311
04-18-2007, 06:07 AM
Katy, I went to an endo once and quickly realized that he did nothing extra for me that my regular doc couldn't do. I've been diagnoised for many years now and I have my dosage adjusted every year or so.

sublime311
04-18-2007, 06:10 AM
=====================================
MAJOR NEWS: TAKING THYROID MEDICATION AT BEDTIME =====================================

We've all heard the recommendation to take thyroid medication on an empty stomach, first thing in the morning. But now, new research is saying that it may be better to take your levothyroxine (i.e., Synthroid) at bedtime, for better absorption. Find out whether you should change the way you take your thyroid medication now.

Found here from Mary Shoman's about.com website. (http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm)

Esq.
04-18-2007, 09:34 AM
Katy I see an Endo. I actually have an appt this afternoon. I have Hashimoto's though, and I am not regulated yet. I was seeing a regular Family Practice guy, before. He was a naturopath so I was on Armour. DUring my pgnancy, I had an elevated heart rate and the doctors blamed it on the Armour. They got me scared, and sent me to an Endo (who I still see). I don't think (so far) that the Endo is any better than the Family guy, except for that fact that she will prescribe more than just Armour.

Fenway
04-18-2007, 10:05 AM
Katy- I made an appointment with an endo because my regular doctor (actually, the NP. I've only seen the MD once..) is giving me the "exercise and don't eat so much" routine. My Endo appt is in June, but I made an appt with my mom's naturopathic practitioner for next Tuesday. Depending on how that goes, I may cancel the Endo appt and try some natural remedies first.


Has anyone else tried a Naturopathic Practitioner?

calliope_muses
04-19-2007, 05:55 AM
Found here from Mary Shoman's about.com website. (http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm)

I started doing this a few weeks ago when I read her article. The only drawback I see so far is that for some reason I have a really hard time remembering to take my Synthroid at night. I was in the habit of taking it when I made my first cup of coffee in the morning. Now I have my medicine right next to my toothbrush, but even that isn't foolproof. I've just got to find a routine that works is all.

On the bright side, taking it in the evening has eliminated nighttime snacking for me. You have to wait 2-3 hrs after eating before taking Synthroid, so I have to finish dinner and any snacks no later than 7:00 or 7:30. Not the easiest thing to do when you don't get home from work until 6:00, but if it helps me shed even one pound I'm all for it!

Susan
04-19-2007, 12:22 PM
Hi ladies, I thought maybe someone here could help me. My DH was diagnosed with "borderline" Hashimoto's thyroiditis a little over a year ago. He is not on any medication, because he did not feel that he had enough symptoms at the time to warrant taking meds (I'm not so sure I agree), and his endo said that was fine. We have been trying to figure out what is wrong with him for a while now, but the main reason he originally went to an endo was because he thought he had a low blood sugar problem. That was never definitively diagnosed, but the blood work showed a TSH of around 3.8 at the time (he has since been tested a few more times and fluctuated from around 2.2 to 3.4), and he also had a slightly elevated antibody level (I forget which antibody, but the last time this was tested it was normal). We moved, so he started going to a new endo - this dr does not even consider him to be borderline, but I think he is going by the old ranges (up to 5.0 for the TSH, I think?).

Anyway, before his original diagnosis, he was showing signs of depression and anxiety. I know that these symptoms can be related to thyroid disease. He occasionally has episodes of lethargy and sometimes anxiety still. He really didn't have any of the physical symptoms of thyroid disease until lately...he has been having really itchy/dry skin and his skins gets these welts when he scratches. I did a little internet searching and found what it appears that he has - it's called dermographism (a form of hives), and occurs when you scratch (and the skin welts up). Has anyone else dealt with skin issues due to your thyroid disease? It seems that when I search on thyroid disease and skin conditions (not just dry skin), there seems to be a lot of links.

My main concern is his skin condition right now, but I am also continuing to try to determine if the root of all of his issues could be thyroid disease. It has been a very frustrating journey trying to get him help - so many drs, even endos, tend to brush off any symptoms if you are not way out of the range of what they consider to be normal. They often (for the mental symptoms at least), want to just throw an anti-depressant med at you.

I appreciate any feedback from you all, and I'm sorry you are having to deal with a thyroid condition.

jenji
04-23-2007, 04:14 AM
Susan - If your DH tested positive for the antibody that indicates hashimoto's, it's something that doesn't really ever get better. it's an autoimmune disease. Every symptom you listed is associated with low thyroid function and are things my Endo checked me for the first time I visited him.
I think it would be worth him getting on Synthroid and based on my experience he should notice some differences within just a few weeks - but everyone's different. I'm obviously not a doctor, but I was absolutely AMAZED how many of my symptoms that I hadn't even related to thyroid problems went away once I got my levels balanced.

Katy - I go to an Endo because 1) it's what my family doctor recommended and 2) I also have a pituitary issue so the two have to be followed together and so (in the year I've been getting treated) far I've found my endo to be infinitely more knowledgeable than my PCP and he is VERY up-to-date with treatment info and studies on things affecting my condition. I could see how if it's just a matter of upping your Synthroid a PCP can do that too and as long as you don't have any new symptoms or other problems, I don't see why it would be a problem to go to one for that instead of an endo.

calliope_muses
04-23-2007, 06:06 AM
Is everyone here going to an endo? I just see my regular doctor and get my levels checked every couple of months. I've already had an increase in my synthroid from .25 to .5 (I noticed the symptoms returning a bit). I'm wondering, if maybe being on this current script for a while, if I should maybe see an endo if we need to increase again (though I'm fine now).

I think it all depends on your comfort level with your Dr and the care you're receiving. My GP was great at first - agreed to the antibody test, was diligent about keeping my TSH in the low range, etc. But when I still wasn't feeling good and started asking about Cytomel she shut down. The words 'I don't know anything about it' actually came out of her mouth. I felt like it was her job to research and learn about different ways to treat me, she didn't want to get that involved. I decided that I needed a Dr who specialized in endocrine/thyroid issues if I was ever going to feel right again. Took a long time though - I've just found 'the' doctor within the last month. And I was right - turns out I have nodules in my thyroid that required the addition of Cytomel and an increase in Synthroid. If I'd stuck with my GP there's no telling how this would have ended up!

Esq.
04-23-2007, 06:13 AM
calliope muses what tests did you have to have done WRT the nodules? I have some on my thyroid, as well as enlarged parathyroid glands (which, apparently, have nothing to do with the thyroid). I had an ultrasound, and now I am supposed to have a CAT scan. I am had planned to call my Endo and ask about Cytomel today, mainly bc I read about it in "The Thyroid Diet". I have high levels of antibodies (Hashimoto's) but have always tested in the normal range. Despite testing in the normal range, I have many symptoms. They seemed to get better for a while, and now, after pregnancy, they are much much worse. I am thinking of getting back on Armour, but I want to try Synthroid + Cytomel first. How has that worked for you?

And the vanity question...if you had any weight to lose, were you able to with the addition of Cytomel?

trestlegirl
04-23-2007, 10:10 AM
Krysten, I am on a combo of Synthroid and Cytomel right now. I gained 12 pounds over the course of treatment for my thyroid cancer because I was completely off medication for a while. Now that I am done with treatment, I have been taking 100mcg of Synthroid plus 12.5 mcg of Cytomel. The weight IS starting to come off, hooray!!! I exercise a lot, too, but I believe the Cytomel is helping. As I get back to my normal weight I will be cutting back on the Cytomel and ultimately just be on 100mcg Synthroid.

calliope_muses
04-23-2007, 11:06 AM
calliope muses what tests did you have to have done WRT the nodules? I have some on my thyroid, as well as enlarged parathyroid glands (which, apparently, have nothing to do with the thyroid). I had an ultrasound, and now I am supposed to have a CAT scan. I am had planned to call my Endo and ask about Cytomel today, mainly bc I read about it in "The Thyroid Diet". I have high levels of antibodies (Hashimoto's) but have always tested in the normal range. Despite testing in the normal range, I have many symptoms. They seemed to get better for a while, and now, after pregnancy, they are much much worse. I am thinking of getting back on Armour, but I want to try Synthroid + Cytomel first. How has that worked for you?

And the vanity question...if you had any weight to lose, were you able to with the addition of Cytomel?

So far, so good. He just started me on Cytomel around the first of March. I go back May 9, so I'm keeping my fingers crossed that there's some improvement. I can tell a little difference in the way I'm feeling, but the dry skin, eyelashes falling out, etc continues. As far as tests, I've just had an ultrasound to this point. He told me that Cytomel will shrink benign nodules and they should disappear within 6 mos. If he doesn't see improvement 3 months into treatment the next step is a needle biopsy. :eek:

Like you, I always tested in the 'normal' range while taking just Synthroid but kept having symptoms. I have a coworker who's currently taking Armour. She tried the Synthroid + Cytomel combo and liked Armour better. I've never tried it, so I don't know how the 2 compare. Depending on my success with Synthroid + Cytomel I may ask to try Armour in the future.

I have quite a bit (ok, a heckuva lot) of weight to lose. Close to 70lbs, I'd say. I actually haven't weighed myself since my last Dr visit. I had gained ~3lbs between my last visit and the visit a week prior! That was before I started the new med routine though and I was right in the middle of PMS. I'll be very interested to see what the scale says in 2 weeks. Maybe I'll sneak and weigh myself on the postal scale at work tomorrow...

Esq.
04-23-2007, 11:15 AM
thanks calliope and trestle girl. :)

I was on Armour from January '06 until September '06. I got pregnant in Feb '06, so I can't really tell you how the Armour compared to Synthroid. I can tell you that I gained an enormous amount of weight while pregnant, but so did my mother with her pregnancies, so it might just be genetic. Now I am stuck with 30 extra pounds, on top of the extra 10 I was carrying before I got pregnant.

I was taken off of the Armour by my new Endo bc I was having an erratic heartbeat while pg. I don't think that it was the Armour, but what do I know.

I just talked to the Endo's office, and they have my current blood work back, inclusing a calcium test for the parathyroid glands. They keep telling me that I am hyperthyroid instead of hypo, but that is a load of crap. I literally have a period the majority of the month, my weight has not budged one single pound despite doing 9 miles on a stationary bike 4-5/week plus taking my dogs and baby for a 2 mile walk about once a week. I still have no ends of my eyebrows, I still feel like I could sleep all day. I have a very superficial scratch on my arm that I have had for over a month now, and it is still not healing! None of this is hyper...it is all hypo. Of course, with Hashimoto's, you swing back and forth, which is probably why I don't gain weight (except for the pregnancy weight) but I can't lose it.

I am going to ask for the Cytomel. If she tells me no, then I am going back to the naturopath and getting back on Armour.

Esq.
04-23-2007, 02:33 PM
Okay, she called. My TSH is 4. My TSH has NEVER tested out of the normal range. So, essentially, I am getting worse instead of better.

SO frustrated.

calliope_muses
04-24-2007, 05:20 AM
Krysten~
I forgot to ask you yesterday - did the endo take you off of Armour b/c he believes the erratic heartbeat was a hyper symptom? I've had erratic heartbeat /palpitations for 2 years and never shown up hyper. I was sent to a cardiologist for an ultrasound just to be safe and he said that while nothing was physically wrong with my heart being hypo can cause the heartbeat fluctuations. In fact, he said any significant shift in thyroid hormone can cause them...

Susan
04-24-2007, 07:48 AM
Thanks jenji for your comments! My DH did test positive for Hashimoto's antibodies, but just barely - I think the normal range was like 0-60, and he tested at 68. But, he also had a goiter, as shown by an ultrasound. Since that diagnosis, he has tested normal for the antibodies, but the new endo did not do an ultrasound and just felt his neck. He said he didn't feel a goiter, but the thyroid felt a little "pebbly." Basically, this endo feels he does not have a thyroid problem at all. I just find it strange that he has a lot of the symptoms, has been borderline in his test results, and had a goiter - yet he doesn't have a thyroid problem? This is such a frustrating condition to diagnose and get treated! I guess if my DH keeps showing signs then we'll try to find a new endo to go to.

Thanks for your help!

Esq.
04-24-2007, 08:39 AM
Krysten~
I forgot to ask you yesterday - did the endo take you off of Armour b/c he believes the erratic heartbeat was a hyper symptom? I've had erratic heartbeat /palpitations for 2 years and never shown up hyper. I was sent to a cardiologist for an ultrasound just to be safe and he said that while nothing was physically wrong with my heart being hypo can cause the heartbeat fluctuations. In fact, he said any significant shift in thyroid hormone can cause them...

yep. At the time I was 8 months pregnant, and I was testing hyper. But I didn't feel hyper at all. Of course, it was hard to tell bc I wasn pg, and they scared me, so I just did what I was told.

I talked to my endo yesterday, and she wants me to up the synthroid before I add cytomel. She wants another blood test in 6 weeks, and if I am still feeling like I do now, then she will add the cytomel. She said that it often causes more problems than it solves.

I have a ct scan this Thursday. At least that part will be out of the way, and I can move forward, whatever the results are.

jellybeany
05-11-2007, 05:26 AM
Cnn.com (http://www.constantchatter.com/forum/showthread.php?p=1315574#post1315574) has a nice article on hypothyroid. It talks about test results coming back "normal" but patients that still have symptoms.

SaphirimalMei
05-11-2007, 06:23 AM
Hey chickies.

I didnt know this thread existed til recently, so now I'm joining up. :)

Background:
Diagnosed Hypo at 14. Levels checked and dose upped every year or so. Was on a relatively even, if slightly downward sliding, keel til I had my babies and all hell broke loose. Recently 4/30/07 diagnosed Hashi's (what took them so long?).

Meds:
was on 150mcg levothyroxine/day until 3 months ago when I was put on a combo of 100mcg levothyroxine + 12.5 mg Cytomel. Levels at draw on 4/23 showed TSH of 5.8 (no wonder i felt like such ass) and they upped me to 125mcg Levothyroxine + 12.5 Cytomel. Next Draw...2 months (ugh)

Cyst:
I'm battling a steadily growing cyst that has been around for a year and has started to cause me some swallowing problems. They did a FNA, and the results were negative for cancer, but they will "keep me under observation"

Classic symptoms:
weight a constant struggle, hair loss, depression, etc. I feel like crap ALL THE TIME, even when my labs are "normal".

I've been seeing an Endocrinologist for the last two years, and I really dont feel like he has helped be one bit. He's a specialist, so in addition to paying more at appointments, it's a struggle just to get a flipping appointment, and then when I DO get an appointment he only spends like 10 minutes with me and I feel like I have been getting nowhere.

After a YEAR of having this cyst on my thyroid I finally was able to make him DO something other than feel it and tell me it's getting bigger. The cyst turned out to be fluid-filled. When they did the FNA he was able to get what looked to be about a teaspoon of fluid out of it. I asked him how much was left and he said "About ten times that!" ick.

Two weeks later and, although the pain has diminished, the swelling hasnt gone down from the FNA. I look like I swallowed a golfball. :( When I spoke with him about what my options are regarding the cyst, he told me my options were: a) surgery or b) deal with it.

I dont really think I like either of those options and his attitude is the pits. I dont feel like he gives one rat's ass about my health. I'm just so frustrated and I dont know where to turn at this point...

Sorry for the rant! If you've made it this far, thanks for reading...

trestlegirl
05-18-2007, 11:38 AM
I had my first post-radiation bloodwork done last week, and my TSH came back 8.9 :eek: No wonder all I want to do is sleep and I can't remember anything. My synthroid dose has been increased to 125mcg so hopefully I will finally feel better in a few weeks!!

SaphirimalMei, sounds like you need to find a new doctor, stat!! It is completely wrong to be treated that way.

It seems very strange to me that you still have so much swelling from your FNA. When I had one done, it barely bruised and didn't swell at all. Sounds like maybe it caused some internal bleeding which caused the cyst itself to swell?? Can you get in to have the doctor take a look at it?

I don't know much about the management of cysts, but I do think that there are some alternative treatments to surgery. One of my coworkers had a large one that was treated with aspiration followed by an injection of ethanol (I think?) which supposedly reduces the chance that the cyst will reform.

Believe me, thryroid surgery is NOT fun and is something you want to avoid if at all possible. Explore any other options that are available!!

diam124
06-07-2007, 12:38 PM
I'm bumping this up because I think I may need to get my thyroid checked. Here are my symptoms (most of these have appeared within the last 6 months):

Weight gain around stomach - This is a big one for me. I generally gain weight around my hips and butt, but I lose it quickly by making small dietary changes. I changed my diet about 2 months ago and I have not lost any weight at all. This is weird to me, BUT, I also just turned 30, so maybe it's just me getting older.

Heavy and frequent periods - I've always had fairly heavy periods, but they have been ridiculous lately - to the point where I was really concerned about the amount of blood I was losing. They are also very frequent - I've had 3 cycles in the past 6 months that were only 20-21 days.

Sensitivity to cold (this is nothing new though)

Feeling "off" and unbalanced with mood swings

Very dry skin - especially on my legs

Random joint/muscle pains.

I feel like there is something wrong with me basically. I've never had my thyroid checked out, so I think I may call for an appt.

miel
06-07-2007, 12:59 PM
Hi Diam--That sounds like it could be thyroid symptoms. It can't hurt to check.

I'm not sure if this is a thread you join. Right now, I am supposed to have a mild version of Grave's Disease--am currently hyper but may turn hypo. But no one is 100% sure why my numbers are the way they are. Apparently, these diagnoses are a little bit iffy sometimes. I have the thyroid antibodies.

I'm glad that it is mild and she said it could go away on its own. That makes me happy. One thing that is strange is all the pain in my thyroid area and the effects in my throat when I am stressed or don't get enough sleep. She says this can't be thyroiditis.

Another thing is that she told me my case (maybe because it is mild?) is not such a big deal for getting pregnant or staying pregnant. This seems like the opposite of what you read on the internet but I'm sure hoping it is true.

Saphiramel I had a doctor who was perfectly nice in the office but did not return my phone calls ever and gave my diagnosis in two seconds over the phone--some kind of goiter. But a goiter isn't anything but a swollen thyroid. Basically, he did not bother to find out what was wrong with me. So I went to see another doctor. She was a woman. She was incredibly thorough and gave me tons of information. Even though she didn't do anything--like put me on meds--so it wasn't truly dangerous to my health if I hadn't seen her I do have a good and thorough doctor now in case anything changes. So it can be worth it to see a new doctor even if the issue is not treatment. You have an ongoing condition and if you truly think your doctor doesn't care, then it's really critical to get a new doctor.

miel
06-07-2007, 01:06 PM
P.S. I totally forgot my question and why I came here!

Since getting my diagnosis I have given up vitamins with iodine (I do eat sea salt--which I probably will give up) and soy products. I have no idea if there is any data on this but I know they can affect thyroid function and I just thought what the heck. It's not like giving up soy will hurt me although it is a hassle since I almost never eat meat and love tofu and soy milk.

I know iodine deficiency can cause thyroid misfunction but I eat enough canned and other salted food that I doubt I would need extra iodine from a vitamin.

Has anyone heard of the soy-thyroid connection?

AttyGrl74
06-18-2007, 09:13 AM
Joining the club - I just got a diagnosis of Hashimoto's.

I've been referred to an Endo - but haven't gone yet.

Esq.
06-18-2007, 09:33 AM
You and me, attygrl :) I have an appt with a new Endo tomorrow morning. Here is hoping that I have finally found a doctor who can get me regulated, and who I can understand.

AttyGrl74
06-22-2007, 08:11 AM
Hi Krysten!

So - I'm going to an Internal Medicine doctor on Monday. He is in the suite next to my regular doctor so I think at least the communication will be good. I wish it was an endo - but there don't seem to be many in Denver.

Anywho - I've been reading up on Hashimoto's & thyroid issues (and goiter - since the u/s came back that I have a goiter) and I think I know what to expect.

But - are any of you currently nursing? Or did you nurse while you were on meds? It doesn't look like the meds are harmful or contraindicated, but since this is new territory for me, I was looking for some personal experience.

Anyone, anyone? Bueller?

sublime311
06-22-2007, 08:18 AM
Here's some information (http://www.thyroid-info.com/articles/breastfeeding.htm) about nursing with thyroid disease. Like you said, it doesn't look like there is a problem with nursing while taking thyroid hormone replacement drugs.

sublime311
06-22-2007, 08:21 AM
Has anyone heard of the soy-thyroid connection?
I have. I was a vegetarian when I was first diagnosed with thyroid disease. I continued to eat soy, but wasn't feeling better after starting my medication. For some reason, soy (like some vitamins/minerals) inhibits the absorbtion of the hormones in the drug. I don't remember it now, but there's a rule about waiting so long after consumming soy before you take your pill.

calliope_muses
06-22-2007, 04:15 PM
For some reason, soy (like some vitamins/minerals) inhibits the absorbtion of the hormones in the drug. I don't remember it now, but there's a rule about waiting so long after consumming soy before you take your pill.

Yup, yup, yup... there are a few others as well: (from ithyroid.com)

Goitrogens are foods which suppress thyroid function...In hypos, goitrogens can further depress thyroidal function and stimulate the growth of the thyroid (goiter).

Broccoli
Cauliflower
Brussel Sprouts
Cabbage
Mustard
Kale
Turnips
Rape seed (Canola Oil)

Other goitrogens include:

Soy
Pine nuts
Millet
Peanuts

I knew about the majority of these but Canola Oil is a new one to me! A couple of others I found while cruising the web - bamboo shoots, horseradish, lima beans, maize, rutabaga, sweet potatoes, turnips, kohlrabi, cassava, strawberries, apricots, cherries, peaches, pears, almonds, peanuts, walnuts, radishes, tofu and spinach.

I had no idea about the fruits - I love cherries, peaches, strawberries, and pears! Ugh!

Rosebud93
06-24-2007, 09:00 AM
Hi all,

Coming out of lurking on this thread to "join the club" and ask a question that has been bothering my poor hairdresser more than me . . .

I was diagnosed with "mild" hyperthyroidism back in September '06. My endo put me on Propranolol immediately (which we discontinued about 3 months ago) and then started me on PTU 50mg/day in December. Since taking both meds, my thyroid levels have been "fine".

My problem (well, one of a few, actually): for the past 5 years, I have been going to the same hairdresser, and every summer he gives me lovely blonde highlights - has not changed his method or the formula in any way. Last month, when he removed the foils, the highlights were blonde starting about 2 inches from my scalp, but the 2 inches closest to my scalp were ORANGE. I called my endo's office and was told they had *never* heard of PTU causing such a side effect. However, yesterday I went to the hairdresser again, attempted highlights again, and got the same results (he fixed the color free-of-charge both times).

My question: Have any of you who are currently taking PTU experienced the same hair highlighting disaster??? I would like to believe my endo, but this is driving me, I mean my hairdresser, nuts. I can't find anything on the Internet, so any insight would be greatly appreciated.

mmeblue
07-03-2007, 04:22 AM
It seems that I am joining your ranks here. I got a call from my doctor's office yesterday - I had some bloodwork done Friday, as I was instructed to do before the physical I have in two weeks, and they called to tell me that my thyroid levels are "extremely low" (I don't know any numbers). They've prescribed levothyroxine - I don't see a brand name, but is that the same as the Synthroid you guys have talked about?

The weird thing is, I don't think I have any of the symptoms of hypothyroidism. I've been losing weight (with healthy eating and exercise), and that's given me more energy and less of the seasonal depression that I usually experience during the summer. I don't think my hair is coming out any more than is normal with brushing it. I haven't had any memory issues, and I'm no more sensitive to cold than I have been in the past. Do these things just come on slowly enough that they're probably there and I just don't recognize them? With the nurse saying "extremely low" in a concerned voice, I guess I would have expected to notice something wrong with me.

Anyway, my appointment with my doctor is in a couple of weeks, so I'll be discussing it further with him at that time. Just wanted to share my story here and see if you guys had any insights for me - this is all kind of new and out of the blue.

sublime311
07-03-2007, 06:33 AM
Welcome to the club!

Thyroid disease is definitely progressive. The direct injury to my thyroid happened when I was still in grade school, but I wasn't diagnosed until I was almost 30. It will continue to get worse for the rest of my life - even with hormone replacement.

Levothyroxine is the generic name for Synthroid among others.

Be sure to ask your doc for your thyroid stimulating hormone (TSH) level. The lower the thyroid hormone is in your body, the more TSH your body will produce. A number above 5.0 is generally considered hypothyroid. I was in the 18 range when I was first diagnosed.

In the meantime, I would research the disease so you feel more in control about it. Mary Shoman is generally considered a patient's guru when it comes to thyroid disease. She has an about.com (http://thyroid.about.com/) website as well as a great book called Living Well with Hypothyroidism (http://www.amazon.com/Living-Well-Hypothyroidism-Doctor-Revised/dp/0060740957/ref=sr_1_1/104-9932778-1367969?ie=UTF8&s=books&qid=1183469508&sr=8-1).

Good luck!

katzmeow671
07-08-2007, 08:56 AM
I don't have much time for the whole story right now but after an ER visit for a racing heartbeat, lots of bloodwork, and a visit to an endocrinologist, I was diagnosed with Hyperthyroidism. The endo said it was most likely Graves Disease since I had no goiters and my thyroid was "slightly enlarged". However, I just got a postcard in the mail from the clinic that said I'm negative for Graves Disease and positive for Hashimoto's which I understand is hypothyroidism??? When I went to the regular doctor (not endo) my TSH was .007 (normal is .35-5.5), my T3 was normal and my T4 was 16.1 (normal is 4.5-12). Can anyone even attempt to make sense of this for me?? I'll call the nurse tomorrow of course but thought maybe some of you more experienced club members might be able to shed some light on all of this. Oh and I'm not on anything right now except for a beta blocker for my heart rate. I was scheduled for the radioactive idodine scan this coming week so I can't take thyroid meds until after the test.

miel
07-08-2007, 11:20 AM
Thyroid disease is definitely progressive.

Is this always true? My endo told me that my Graves Disease could correct itself or go into remission. I hope this is true...

sublime311
07-08-2007, 02:20 PM
Hmm, I don't know Miel. Maybe it's because Graves Disease causes hyperthyroidism so it's a symptom of greater problem..? If your Graves Disease goes into remission your thyroid problem does away. Right? I'm just not sure about it. I should have said "hypothyroidism is definitely progressive." Sorry for the scare!

miel
07-09-2007, 01:33 PM
Thanks Sublime. I want things to work out but I'll just try to keep my fingers crossed and take things as they come.

Esq.
07-09-2007, 03:15 PM
I don't have much time for the whole story right now but after an ER visit for a racing heartbeat, lots of bloodwork, and a visit to an endocrinologist, I was diagnosed with Hyperthyroidism. The endo said it was most likely Graves Disease since I had no goiters and my thyroid was "slightly enlarged". However, I just got a postcard in the mail from the clinic that said I'm negative for Graves Disease and positive for Hashimoto's which I understand is hypothyroidism??? When I went to the regular doctor (not endo) my TSH was .007 (normal is .35-5.5), my T3 was normal and my T4 was 16.1 (normal is 4.5-12). Can anyone even attempt to make sense of this for me?? I'll call the nurse tomorrow of course but thought maybe some of you more experienced club members might be able to shed some light on all of this. Oh and I'm not on anything right now except for a beta blocker for my heart rate. I was scheduled for the radioactive idodine scan this coming week so I can't take thyroid meds until after the test.

katzmeow, I can't explain it for you, but I can sympathize. I had tachycardia when I was pregnant, and everyone flipped out and started treating me like I was hyperthyroid. They based this on the racing heart and a TSH test that showed TSH levels lower than .03. I have since found out that Armour, which I was on at the time, supresses TSH, and it is quite normal that my TSH level was that low while taking it. Of course, I did not know that at the time, so I let them freak me out, I switched endos (bc now I was afraid of my endo) and went on Synthroid. I have been screwed up since.

Long story short, I think that a racing heartbeat can occur when you are HYPOthyroid, especially when you have Hashimoto's (I do as well). From what I have read, Hashimoto's can cause some people to bounce from hyper to hypo, but the lasting effect is hypo. I sus[pect that I am one of those people, and you may be as well.

AttyGrl74
07-10-2007, 08:37 AM
Katz I was just recently diagnosed with Hashi's as well and my blood tests have been all over the charts. I was hypo one week and 10 days later I was hyper. My understanding is that Hashi's slowly causes your thyroid to be incapable of working correctly. But that at certain times (probably where you and I both are right now) the thyroid is still trying to do its job but doesn't regulate well.

I'm actually now tracking my symptoms and I feel like I'm swinging between hyper and hypo every couple of days. I'm hyper right now (at least that is how I feel).

I could be way off - but that was my understanding.

My update - I finally got everything squared away and I have my first Endo appointment a week from today. I'm just looking forward to getting some much-needed medical help.

AttyGrl74
07-10-2007, 08:41 AM
Oh yeah - I meant to ask about goiters. I have a multi-nodule goiter found by u/s - what can I expect? Or what have been your experiences with goiters?

It isn't affecting my breathing or swallowing and isn't visible.

I've been kind of assuming that they'll let it go until it becomes a problem.

Well, either way - I guess I'll find out next Tuesday.

Esq.
07-10-2007, 08:50 AM
AttyGrl- I have a goiter with lots of nodules (the us tech actually said that I "have many many nodules") and I have had 2 u/s and a CT scan, but no fines needle aspiration as of yet. I don't think that they do FNS unless a nodule is bigger than 1 cm or something. They thought I had 2 bigger than that, but they ended up being lymph nodes.

I think that they will just let it go for now as long as none are too big.

katzmeow671
07-13-2007, 06:07 AM
I didn't realize anyone had answered me ... sometimes my CC notifications don't come through. Anyway, the nurse talked to me for all of 30 seconds on Monday and said, Hashi's can be either hyper or hypo and my bloodwork said I was hyper so to start taking the Tapazole after my radioactive iodine uptake test next week. They will recheck me at my appt August 31st although I may be canceling that appt and changing endos. Meanwhile I have an appt with my OBGYN week after next and asked for some extra time to be scheduled into the appt so I could talk to her and get a better understanding of everything. It shocks me that I've had this for quite possible 2 years and had no clue. I just thought all sorts of weird things were happening due to pregnancy, birth, and hormones trying to get back into normal ranges.

Esq Thanks for the empathy. It sucks doesn't it?? I too feel symptoms of both hypo and hyper so its extra confusing. And my endo acts like I should know all there is to know and that this shouldn't be scary at all. Which is exactly why I'm considering switching docs.

AttyGrl74
I finally got everything squared away and I have my first Endo appointment a week from today. I'm just looking forward to getting some much-needed medical help.
Isn't it frustrating?? I'm just so ready to feel better now that I know what's wrong with me. And the other thing is everyone in RL just says "oh, well at least its treatable" That frustrates the heck out of me because yes, its treatable but I've been living with this knowledge for a month and have yet to be able to take anything to treat the symptoms and I still have another week to go. Not to mention the meds take weeks to kick in. No one gets that and I feel like I'm battling this all alone. Some days and moments I feel absolutely fine but other times I'm in a complete state of panic. I realize anxiety is one of the symptoms of this disease and I know its the thyroid making me feel that way but I just want someone to say " I know this must be hard for you to deal with emotionally and I'm here to listen if you need to just vent your frustrations". Sorry don't mean to ramble. Let us know how your appt goes next week.

AttyGrl74
07-13-2007, 08:16 AM
Hey, Katz, I know this must be hard for you to deal with emotionally and I'm here to listen if you need to just vent your frustrations.

:)

But I'm with you - when I tell people I have thyroid disease that is yet untreated, they ask if I'm going to be ok and I say "I'm not going to die, but my thyroid will be kaput at some point in the future" and everyone just kind of shrugs and changes the subject.

But I'm with you on the anxiety - my stomach has been a big anxious knot all week and for no good (mental) reason.

mmeblue
07-19-2007, 08:01 AM
Welcome to the club!

Thyroid disease is definitely progressive. The direct injury to my thyroid happened when I was still in grade school, but I wasn't diagnosed until I was almost 30. It will continue to get worse for the rest of my life - even with hormone replacement.

Levothyroxine is the generic name for Synthroid among others.

Be sure to ask your doc for your thyroid stimulating hormone (TSH) level. The lower the thyroid hormone is in your body, the more TSH your body will produce. A number above 5.0 is generally considered hypothyroid. I was in the 18 range when I was first diagnosed.

In the meantime, I would research the disease so you feel more in control about it. Mary Shoman is generally considered a patient's guru when it comes to thyroid disease. She has an about.com (http://thyroid.about.com/) website as well as a great book called Living Well with Hypothyroidism (http://www.amazon.com/Living-Well-Hypothyroidism-Doctor-Revised/dp/0060740957/ref=sr_1_1/104-9932778-1367969?ie=UTF8&s=books&qid=1183469508&sr=8-1).

Good luck!
Thanks, sublime311, and sorry for not coming back to respond earlier! I just had my physical and went over the lab results with my doctor. My TSH level was 22.385 (doc said he likes to see around 1.5 for someone my age). I asked him about the lack of symptoms, and he said it just means that we caught it early, before the symptoms started - so the "progressive" thing is right on, I guess. But he also said that when I get the blood work repeated at the end of the month, he's going to check the T3 and T4 levels as well, to make sure that my TSH level corresponds accurately to those levels so we can know that my brain is communicating to my body correctly.

I'm going to check and see if my library has that book...it looks like it would be a useful resource!

diam124
07-19-2007, 09:30 AM
The info on alternating between hypo and hyper is interesting. I have yet to get checked out by a doctor, but I also have symptoms of both (I actually had 3 episodes of tachycardia in the past week that have come out of nowhere while sitting down). Because I had symptoms of both I assumed they weren't thyroid-related. Maybe I do need to get it checked after all.

AttyGrl74
07-20-2007, 08:05 AM
So - I'm trying to cut my soy intake because I feel like it could be contributing to the growth of my goiter.

But I eat Kashi bars almost every morning for breakfast - and I think they're soy based.

Does anyone know of any non-soy based weight-watchers friendly meal replacement bars?

Katy
07-20-2007, 09:57 AM
I think Fiber One bars might work. They're more about the fiber than the protein and the chocolate ones are only 2 points (I believe). The peanut butter ones are 3 points. There's also Curves :rolleyes: and Special K bars that are probably pretty low points, but I don't know about the soy as I've yet to even try them.

AttyGrl74
07-20-2007, 09:58 AM
I think Fiber One bars might work. They're more about the fiber than the protein and the chocolate ones are only 2 points (I believe)


Kickass!

Of course - will they kick my ass from all the fiber? :D

calliope_muses
07-20-2007, 04:05 PM
The All Bran bars are really good too - 2 pts, I believe. I love the Cinnamon Raisin bars...

trestlegirl
07-20-2007, 04:36 PM
MetRx bars are mostly whey protein...no idea about points though, and I'm not sure I'd want to eat those for breakfast!!

Have any of you made modifications to your diet that have helped you feel better? I've been on a full replacement dose of Synthroid since mid-April now, and still don't feel "normal" and my energetic self, even though my TSH is nice and low. I eat a very healthy diet, but obviously my metabolism has changed and I wonder if some of my body's nutritional needs have changed along with it.

AttyGrl74
07-23-2007, 11:37 AM
Wonder of wonders, my Endo called me at 5:30 on Sunday night!

Apparently, I do not have a dominant node in my 'roid, so he wants to hold off on the FNA. He stared me on .05mg of Synthroid to see if it will shrink my goiter

.05 sounds like such a teeny tiny dose. Is that sort of the standards baseline?

p.s. thanks for the meal replacement bar recommendations. I posted the same question on the LJ Community "Thyroid" and got "You should eat a full meal" as a response. STFU!!! :D

Katy
07-23-2007, 01:08 PM
AttyGrl, I think I was started on .25 and then bumped up to .5. I'll probably be bumped up again this next visit since many of my symptoms seem to be back (I can feel the "lump" in my throat again, I seem to have poor circulation and light headedness, and I'm back to full on exhaustion mid to late afternoons, complete with burning eyes).

Trestle, I didn't make any outright food changes. Then again I'm on WW, so in theory I'm eating better. I do avoid milk a lot more though since milk and milk products make the "lump" in my throat more prominent (or so it seems to me at least).

miel
07-23-2007, 07:41 PM
Can I ask a question? You mention feeling a lump in your throat. Sometimes it is like a constriction. I told my doctor about this and she said that I don't have a lump that she could feel therefore it could not be related to my thyroid.

She seems like an excellent doc. But if this is common to feel the lump and I feel it maybe she is wrong?

I quit eating soy, taking all vitamins with iodine (I use sea salt but maybe I shouldn't). I've been eating a ton of fruits and vegetables and almost no sugar, white flour or refined foods. I have no idea if this helps or not but I do believe I can feel a reaction to soy products.

Katy
07-23-2007, 11:27 PM
in my case, my doctor didn't even consider my thyroid until I casually mentioned that I thought I had a milk allergy since I had a pretty constant "lump" in my throat. It was at that point that she perked up and said that she wanted to test my thyroid. And low and behold, I was high - not hugely high like some folks here, but high enough that she put me on Synthroid. It's made a HUGE difference in my day to day health. In fact, one of the very first symptoms to disappear (obvious enough to my husband that he woke me to let me know), was that my snoring stopped and the "lump" went away.

I don't know if the "lumps" are common, or if they're just one of many symptoms. To me, it really almost seems more phlegmy, but really it responds to the meds and it usually one of my primary symptoms. When I combine it with other symptoms (such as exhaustion and inability to stay focused), it let's me (personally) know that I should have my levels checked again.

I think the fascinating thing about thyroid levels is that you don't really realize just how crappy you've been feeling until those symptoms - that you never really thought of as "symptoms" before - clear up and you feel SO good. I'm truly amazed at how different my quality of life is since getting on Synthroid. Friends and family have even noticed and commented.

Esq.
07-24-2007, 06:24 AM
miel- I have had three endo's now, and only one felt my lumps. u/s confirmed that they are there. I can also feel them, and often feel like I can't swallow. I think you should trust how you are feeling, and see if you can convince your endo to get you an u/s.

I had an appt yesterday, again...back to endo 2. The one that I tried last month is not going to work out at all.

So, endo 2 couldn't figure out why I can't lose weight, especially since I was testing hyper for a while. She offered me meridia or zetia. I am hesitant. I really wanted to do this on my own. But the truth is that I have tried everything short of completely starving, and my weight doesn't budge. I don't gain, but I don't lose. So I took the prescription for meridia. I haven't started it yet. Has anyone else tried it?

miel
07-24-2007, 08:32 AM
Hi Esq

I've been on a very strict diet. It's a diet that a few years ago would help me lose and maintain a much lower weight. It barely works now. If I go off it even slightly, I instantly gain weight. I did lose weight and keep it off but it wasn't very much and to keep it off I have to be SO strict.

My weight gain happened instantly and all at once and happened a few years ago and now I'm really starting to wonder if it isn't partly related to my thyroid. I tested hyper too.

As far as Meridia, I took a different weight loss drug whose name escapes me now for a short time and quit because it didn't work and it made me feel weird. I wonder if a weight loss drug that reduces appetite will help all that much? Are you finding that your problem is eating too much? Or burning too little? I don't actually know very much about thyroid related weight problems but I believe for me restricting calories is not a great solution for weight problems because my body just adjusts to that. Not eating fattening foods--like on the South Beach Diet--works better because it doesn't mess up my metabolism and because I am not hungry I can stay on it. (If I do mess up once in a while it is more because of convenience and not because of hunger.) Also, you have to eat super healthy which I think is good for the thyroid in the long run.

I hope meridia does work for you! I know how frustrating this is!

AttyGrl74
07-24-2007, 08:55 AM
Esq I'm taking Wellbutrin XL for depression (although I'm now fairly certain that my problem is thyroid and not so much depression) and apparently WBXL is being tested for use as a weight loss drug because it is an appetite suppressant. Just an idea. I haven't tried Meridia - Weight Watchers is working alright for me right now.

Miel My lumps were felt by 2 doctors but not the 3rd who tried. I agree with Katy - it feels like I'm phlegmy and I kind of wrote it off as a result of seasonal allergies. If I am not swallowing food or water I definately have to gulp to get past the lump. I second Krysten's advise to request an u/s.

Good luck!

I took Katy's advise and I tried the Fiber One bars this a.m. - the peanut butter one. And it was GOOOOOOOD. I also got some Quaker Breakfast Cookies (3 pts.) but I forgot to check out the protein levels. Thanks for the tips!

trestlegirl
07-24-2007, 01:05 PM
Miel, the first person who felt the lump in my thyroid was a Head and Neck specialist who I was seeing about a nasty case of strep throat. My PCP never felt it - in fact she had ignored my concerns about my thyroid for years despite borderline levels and a family history of assorted thyroid problems. The H&N guy sent me to see an endocrinologist, who also couldn't feel it even though she knew where to look. Luckily the H&N surgeon is renowned in the hospital for his "good hands" and ability to discover thyroid nodules, so my endo believed him and did an ultrasound to double check, and there it was. So it's lucky that I had bad strep throat, or it might not have been discovered for years. And since the lump was cancer rather than a nodule, doubly lucky.

So yeah, I'd ask for an ultrasound!!

miel
07-24-2007, 07:56 PM
I got a thyroid uptake scan. Is that the same as an ultrasound?

Maybe this is a weird question but if it is not cancer is there anything they can do for nodes?

trestlegirl
07-25-2007, 08:17 AM
For a thyroid uptake scan, you will be given a trace amount of radioactive iodine, and they will scan to see how much is absorbed by your thyroid. It will show the nodules and show whether they are working like regular thyroid tissue, or producing too much/too little hormone. It's more annoying than an ultrasound but really not that bad.

If your nodules get to be problematic, they can be removed surgically. Or for certain types of nodules, they'll try to shrink it by giving you more thyroid medication - but that only works in certain cases. One of my coworkers had some sort of aspiration done (non-surgical, just a needle), where they were able to shrink it, but that might have been a cyst rather than a full blown nodule.

miel
07-25-2007, 06:55 PM
Thank you for explaining that Trestlegirl.

katzmeow671
07-26-2007, 07:40 PM
Ok so I've seen the ER doc, the general doc, the endocrinologist and my OBGYN and I think I'm still in the dark about all of this! I understand the meds take a while (up to 8 weeks... I've taken them for five days) to kick in but damnit I'm ready to feel like me again!!!!!!!!! This is so freakin frustrating!! I had the radioactive uptake scan last week and my uptake was 38%. I'm definitely hyperthyroid at this point. I wish I were hypo... it seems so much easier to treat/control. My whole thyroid is enlarged they said albiet not horribly. I really think I need to change endo's though. I don't see mine again until August 31st and that just seems like forever and a day away. I've had to call his office numerous times for various reasons (questions, prescriptions, etc) and get the brush off every single time. Not the best bedside manner in my opinion. The doctor himself is ok.. his office just sucks. I think I'm still feeling heart palpatations and according to the pharmacist at Walgreens I shouldn't be if I'm taking the beta blocker so I'm calling my general doc tomorrow to discuss. I just feel like a basket case and want someone to sit down and say you should be feeling this, or you shouldn't be feeling like this. On top of everything else I think either the anxiety or the meds are giving me gas and confusing me even more because of course gas pain feels like heart pain. Ugh Ugh Ugh!!! Did I say Ugh!!???

miel
07-27-2007, 12:53 AM
Katzmeow Wow, that sounds hard. I don't know why endos offices are so bad! I had a very similar experience. I would consider switching docs if at all possible. You need effective and quick treatment I think.

MidwesternGal
07-28-2007, 07:59 PM
Hi there everyone. I have been feeling rather "off" in the last few months. I know a lot of people in the Family forums talk about how a lot of women have thyroid problems post-partum, so I thought I'd ask you ladies if it sounds like I should get a check.

Here's my list of "symptoms:"
*Inability to lose weight--I have been working out everyday for the last 2 months. Instead of losing weight, I have gained 4 pounds.
*Depression/mood swings--Sometimes I think about how nice it would be if I just wasn't around anymore. . . but then 2 hours later, I'm just fine!
*Itchy scalp/hair loss--Well, I chalked it up to being post-partum, but now at 9 months past, I would think that would have quit by now!
*Cold intolerance--Um, I am usually the 1st person to wear a tank and shorts when it hits about 70. . . but I am cold and the air is set at 78!
*Diminished sex drive. . . nuff said!
*Bruising--Yes!! I mentioned this to my DH the other day, that I was bruising a TON lately and he just said it was my now-mobile 9m old "beating" me up.
*Abnormal periods--Going between 60-90 days between periods; I used to be able to tell you a 2-hr timeframe when AF would show up!

I also read online somewhere (sorry, can't remember where) that if your close relatives have rheumatoid arthritis, premature gray hair, or are left handed, you could also be at risk for hypothyroidism. I have all 3 of those in my mom/maternal g'ma.

So what do you all think? Should I get tested? And, does your insurance pay for this? I only get 1 "yearly" paid for, and I went in all ready. So was wondering what to say when/if I called for an appointment? Or should I just try some OTC things like potassium/magnesium/calcium and selenium (as previously mentioned) and see if that works until my next yearly appt?. . . . I live in a small midwestern town and frankly, if you go to the doctor and you're clearly not sick, dying or pregnant, even the docs look at you funny. I guess I just don't want to go and have them think I'm just a hypochondriac.

Thanks!

AttyGrl74
07-31-2007, 08:10 AM
Last Monday, I started out on .05 Synthroid and I was hoping that I'd start to feel better, but not so much.

This is a highly stressful week for me, so that may be contributing - but how long did it take for you all to start to feel better after starting medication?

katzmeow671
07-31-2007, 08:29 AM
Midwestern Gal I'd definitely get a check. My OBGYN regularly checks my thyroid levels every year. Don't be scared to make a call to your nurse and get scheduled for blood work. I learned the hard way that thyroid problems are nothing to mess around with.

AttyGrl74 First of all, I think we have a mutual friend in common (Joelle) and I'll be emailing you as soon as I get the energy (can you relate to that statement???). As for the meds, did the doc say when you should start feeling better? I'm on meds for hyper not hypo but I know in my case it takes up to 8 weeks for the meds to kick in. Not sure if its the same way with Synthroid.

Katy
07-31-2007, 10:26 AM
AttyGrl - I started feeling a difference in about 3-5 days. Actually before I even noticed a difference my husband noticed and woke me up to tell me that I wasn't snoring (first time in long, long, long time). From there I slowly noticed other symptoms abating. Keep in mind though, they're starting you on a pretty low dose (which a much higher number, than say I started out with) and you'll probably need a higher dose, so that will probably have something to do with it.

Midwestern Gal - a basic blood test will give them a basic picture of things, so it wouldn't hurt to ask. If the numbers reflect thyroid issues, they'll probably ask for a second batch of blood work to check deeper with the levels.

ez2luv
07-31-2007, 01:09 PM
just saw this thread!!!

I've had hypothyroidism for 10+ years now.

Since I've had my DD 3 years ago, it's become worse, going from .5 Synthyroid to now 1 mg Synthyroid/day.

To be honest, I haven't noticed much change - still sluggish as always, inability to lose weight, low sex drive, mood swings, cold ALL the time.....

I get tested quite often and my levels are 'normal' now - which is great, but I thought I'd feel better.......????

:mad:

Esq.
07-31-2007, 01:19 PM
ez2luv- I think you mean HYPOthyroidism, right?

ez2luv
07-31-2007, 02:05 PM
oops...fixed. thanks

miel
07-31-2007, 08:22 PM
Hey is anyone doing acupuncture for thyroid? I'm going to try it. I will let you know how it goes if anyone is interested.

ez2luv
07-31-2007, 08:24 PM
I never thought of that!!!!

Even though he's a few hours away, one of my hubby's BF is a acupuncturist!!!

:eek:

miel
07-31-2007, 09:03 PM
Try it. A lot of thyroid issues are related to things like stress, hormones, inflammation and immunity--acupuncture is actually proven to work for issues of that type.

AttyGrl74
08-02-2007, 10:33 AM
Is jittery-ness and shaking hands and being jumpy a side effect that anyone has experience with Synthroid?

I'm feeling funky today.

Katy
08-02-2007, 10:39 AM
no, not a side effect that I've found (though I rarely, if ever read the side effects pamphlet). but here you go...
Symptoms of low thyroid levels include fatigue, muscle aches, constipation, dry skin, weight gain, slow heart rate, sensitivity to cold, or dry brittle hair that tends to fall out easily. These symptoms should disappear as your body adjusts to the medication. If they persist or become bothersome, notify your doctor promptly.

Headache, nervousness, trembling, sweating, increased appetite, diarrhea, weight loss or insomnia may occur. If any of these effects persist or worsen, notify your doctor promptly.

In rare instances, some hair loss may occur during the first few months of starting this drug. This effect is usually temporary as your body adjusts to this medication. If this effect persists or worsens, notify your doctor promptly.

Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if you have any of these unlikely but serious side effects: chest pain, rapid or irregular heartbeat, shortness of breath.

Tell your doctor immediately if you have any of these very unlikely but serious side effects: seizures.

An allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of an allergic reaction include: rash, itching, swelling, dizziness, trouble breathing.

If you notice other effects not listed above, contact your doctor or pharmacist.

Esq.
08-02-2007, 11:31 AM
attygrl- you are probably on a dosage of synthroid that is too high for you. Your symptoms right now are hyperthyroid, so your dose might be making you hyperthyroid.

katzmeow671
08-02-2007, 03:20 PM
attygrl - shaky hands are a symptom of hyperthyroidism. As I understand you have Hashi's which can present symptoms of both. I have that as well. I would call your endo's office and just let them know how you're feeling

I've been having several bad days in a row and can empathyize with you completely. Its so damn confusing and irritating. I hope you feel better soon.


I have an appt with a new endo on Monday. I hope he's a heck of a lot more compassionate than the other guy. In the meantime I'm depressed and the anxiety (thyroid induced) seems to be getting worse so my general doc upped my Xanex. He said unfortunately its the only way to get through this period. I have to admit the xanex does make me feel better. I just don't want to end up with an addiction to overcome down the road. In the meantime my husband is up for a major job promotion... in another city. Not the best timing honey. :rolleyes: (I realize he didn't plan it that way but tell that to my crazy thyroid.)

miel
08-30-2007, 11:58 PM
As I understand you have Hashi's which can present symptoms of both.

I didn't realize this. I am hyper. For some reason, this seems to make everyone say 'Graves.' But I have Hashi's antibodies.

I just found out more about my condition. I make both kinds of thyroid antibodies. I have Hashi's AND Graves. My Thyroid Peroxidane antibodies are very high--2596 when normal is less than 60.

My TBIIs are high. The Graves antibodies.

The doctor wasn't all that understanding when I became sort of disturbed by this new information. She kept saying 'but we can fix this.' But then when I asked if you could do anything about the autoimmune disease, which causes miscarriages, she said you can't fix that. So you can't fix it.

I really honestly didn't get upset or complain or anything. I just asked too many questions I guess.

Does anyone know about this thing of having both Hashi's and Graves and being hyper?

Now I'm going to try to calm down my immune system. What do you guys do to try that? Is anyone with Hashis' or Graves doing alternative medicine since regular medicine has nothing for the autoimmune aspect of these illnesses?

I'm not a huge believer in alternative techniques (except diet and relaxation and things like that...) but I feel that I really must try them at this point since I do want to manage this better. When it comes to diet and exercise, I am very good. When it comes to sleep, work and stress, I suck. So behavior will have to come first. :(

The irony of course is that I don't feel bad right now! Stress is my main trigger and next week will be a ton of stress. So I'll have to see how it goes. Stress is probably what gave me this in the first place.

Esq.
08-31-2007, 08:02 AM
I didn't realize this. I am hyper. For some reason, this seems to make everyone say 'Graves.' But I have Hashi's antibodies.

I just found out more about my condition. I make both kinds of thyroid antibodies. I have Hashi's AND Graves. My Thyroid Peroxidane antibodies are very high--2596 when normal is less than 60.

My TBIIs are high. The Graves antibodies.

...

Does anyone know about this thing of having both Hashi's and Graves and being hyper?

.

Miel- I just pulled out my original blood test to see what you were talking about (I also have Hashi's). My blood test has Thyroglobulin Antibodies, and Thyroid Peroxidase Antibodies, too. the TPAs outnumber the TGAs by about 600, so I guess that makes me lean to Hashi's, but I must have Graves then too? I am not sure if that is what it means, but I thought I would look to see. At least you know that one other person has the same thing going on.

I have swung back and forth being hypo and hyper. After having my daughter, I was hyper for a long time, but not losing weight and had periods that lasted 20 days or more (hypo symptoms). I share your frustration. Nothing ever seems to make me feel better.

If the autoimmunde disease you were referring to was Hashi's, I hope it helps you to know that, although I have both sets of antibodies, I was able to carry a pregnancy to term.

miel
08-31-2007, 06:50 PM
I hope it helps you to know that, although I have both sets of antibodies, I was able to carry a pregnancy to term.

Thanks. That's really good to know. Did you get any treatment? Did you try alternative medicines at all--acupuncture or anything like that?

Sorry to be so inquisitive but a couple more questions--Did you see a perinatologist? How concerned were your docs?

Esq.
09-17-2007, 06:07 PM
Thanks. That's really good to know. Did you get any treatment? Did you try alternative medicines at all--acupuncture or anything like that?

Sorry to be so inquisitive but a couple more questions--Did you see a perinatologist? How concerned were your docs?

The only treatment I had was being placed on synthroid. My endo was concerned that I would not be able to get pregnant, and that if I did, I would not be able to sustain the pregnancy. I was lucky in that I was able to get pg fairly easily and was able to sustain it. I did have a m/c a couple of years before I was diagnosed, though.

The Endos watched me pretty closely during my pregnancy bc I had not been stabalized before I got pregnant. I had a lot of switching around of dosages and, later, medications, while I was pregnant.

I wish I could be more helpful.

You have Hashi's, right? How long ago were you diagnosed?

miel
09-17-2007, 08:32 PM
You have Hashi's, right? How long ago were you diagnosed?

I first found out about my tsh in Feb. but didn't really find out what was going on until May. One endo I saw was kind of ridiculous. The next one seemed to know what she was doing.

Of course, it doesn't do much good. They can't fix the antibodies.

I just had a miscarriage. :( I believe it was unrelated to the Hashi's. But of course, I can't really know can I? But I really do believe that because it was such an early one. It was one of those that just didn't take, I think.

Here's the good side to my situation: I am subclinical. Or at least I think that is what you call it. I have no symptoms! My periods are normal. I'm super lucky so far, in other words. All that I have is a ton of antibodies and some thyroid weirdness. But so far, no nothing except yes, a weight issue. I don't feel ill, in other words. Given what I read about, I am really glad for this. Also, I hope it means that pregnancy will go OK when I get pregnant again.

Of course, I'm awfully tired right now and I haven't had my levels checked. I think pregnancy lost can be a little tiring. I'm just trying to hope for the best.

Thanks for your answers!

usafwife
09-17-2007, 10:40 PM
Hi ladies. I'm about to pull my hair out. I found out I was hypER about 3 months after my DD was born (after being told it was just my body adjusting following pregnancy and childbirth). The doc I was referred to was a total joke and I never went back. I got more information by looking it up myself. I had to call and request my lab results more than once (finally got them 4 wks later). Went to another doc and started meds. Lost a pregnancy even though we weren't trying (guess that's the reason I don't trust BCPs) due to the thyroid levels being off. Then when I become pregnant with DS we find out I'm hypO. My OB is still amazed that I was even able to get pregnant, let alone stay pregnant at the levels I was at. I had a rough first 16 wks of the pregnancy (bleeding, nearly losing the pregnancy with contractions and high BP when my mom coded (and nearly died) - later found out she had a ruptured aneurysm). We aren't sure but we think the bleeding was due to a loss of a vanishing twin pregnancy (I was at high risk of losing it anyway).

Then fast foward to after his birth. I've had one problem after another. It's like a horror movie scene when a visitor comes every month (for weeks on end). I am beyond exhausted, can't sleep even though I'm exhausted/tired, extremely fatigued, muscle aches/fatigue, I feel as though I've run a 1,000 mile marathon every minute, can't lose weight (I hardly eat and still can't lose weight), can't stand being too hot or too cold, mildly depressed, I'd like to exercise but simply don't have the energy to (if I do I can only be on for about 5 minutes and then have to stop and rest), my hair falls out in clumps. The list goes (that's just a part of it).

I finally asked my OB about seeing an endo and they finally got back to me (I'd asked before but they said no) and said it wouldn't be a bad idea. So I call and I can't get in til the end of November. It took my OB's office over a week to get a repeat blood test ordered to check my levels (after they were the ones who wanted it rechecked). I feel as though I'm being ignored when I call. When I called to get the labs ordered I also told them I wanted a copy of my chart (the endo's office already told me they wanted copies of my labs) the woman informs me that they will forward them on to the doc. Uh, they don't even know the doc's name, when my appt is, or anything else. They weren't the ones who set up the appt (good thing I didn't need a referral because I'd still be waiting on it). I tried to explain that to them but they never understood.

I've gone between being hypER and hypO so many times the past few months that's it been a rollercoaster ride. Or at least that is what they tell me when I've gotten the labs redrawn (following DS' birth, 6 wks PP, back in August and I believe there was another time). I never knew you could go up and down so many times. I've made an appt with my family doc to discuss things. I'm basically putting my life on hold because of the issues I'm having and I can't continue to do that. I have to set the alarm every hour (every two hours at max) or I've got a major problem on my hands. (It's been this way since March.)

I asked them to run a test to see if I was anemic but they didn't request it. I am pretty sure I'm losing too much blood each month as well. I've been anemic before and I've noticed the similiarities again. Guess I'll disucss it later this week. I get told to just continue on the BCPs until the thyroid levels get worked out. Am I supposed to wait until a year or more before that happens?? I didn't want the darn things in the first place but got them shoved down my throat (I made it clear that I've got enough risk factors for disease/illnesses that *could* be caused by them that I don't really care about increase my chances by taking them. I also have migraine headaches that are made worse by BCPs). I'd like to keep my risk factors as low as possible considering I've already got 3 of the 5 risk factors....lets not keep adding to them. I'm about on my last straw (or maybe that should be last strand of hair).

Esq.
09-18-2007, 06:44 AM
I first found out about my tsh in Feb. but didn't really find out what was going on until May. One endo I saw was kind of ridiculous. The next one seemed to know what she was doing.

Of course, it doesn't do much good. They can't fix the antibodies.

I just had a miscarriage. :( I believe it was unrelated to the Hashi's. But of course, I can't really know can I? But I really do believe that because it was such an early one. It was one of those that just didn't take, I think.

Here's the good side to my situation: I am subclinical. Or at least I think that is what you call it. I have no symptoms! My periods are normal. I'm super lucky so far, in other words. All that I have is a ton of antibodies and some thyroid weirdness. But so far, no nothing except yes, a weight issue. I don't feel ill, in other words. Given what I read about, I am really glad for this. Also, I hope it means that pregnancy will go OK when I get pregnant again.

Of course, I'm awfully tired right now and I haven't had my levels checked. I think pregnancy lost can be a little tiring. I'm just trying to hope for the best.

Thanks for your answers!

I am so sorry about your miscarriage, miel. Truly, truly sorry. I know how devastating it can be.

It sounds like you are still pretty early in your treatment. It can take a couple of years to get a thyroid patient stabilized, and that fact that you have Hashi's makes it even harder. Despite that, I think once you are even close to stable you might be able to sustain a pregnancy. I wasn't very far into treatment when I got pg, and so my levels were no where near stable. My best guess is that the mere fact that I was taking the hormone replacement, no matter what dosage, is what allowed me to get pg. Once I was pg, they watched me pretty closely, and that is probably what allowed me to stay pregnant. I also knew that I was pg over a week before my first missed period, so that might have helped too. Knowing that early allowed me and the doctors to be proactive about making it stick.

I am thinking good thoughts for you.

AttyGrl74
09-18-2007, 07:39 AM
Sorry for all the pain that Miel and Usafwife are going through.

I had my followup with my Endo yesterday and I didn't walk out feeling very 'cared for'. I have a goiter and he didn't even feel my thyroid. Weird.

Hopefully the bloodtest will come back soon. I'm on .5 synthroid and I'd like to bump it up a bit because I really don't feel like I'm feeling my best.

miel
09-18-2007, 07:16 PM
Wow USAwife. That sounds awful!!! I'm so so sorry.

I didn't understand this:


I have to set the alarm every hour (every two hours at max) or I've got a major problem on my hands. (It's been this way since March.)

I wasn't sure what was going on with you that you had to set the alarm.

It just sounds so hard. I hope it gets better for you soon!!!


I also knew that I was pg over a week before my first missed period, so that might have helped too.

Did they do something besides the thyroid meds? It's incredible how much you read about--the different techniques used to sustain a pregnancy! There are also immune issues and there are things they give people for those. Did you get anything for those?

I was being treated by the endo and she said that it wasn't a big problem for me to be pregnant and I should not worry. My levels are not all over the place...yet. I guess they could be at some point. I'm stable at this point. Dang, I know how lucky this is. I just hope this luck holds out.

usafwife
09-18-2007, 11:02 PM
Wow USAwife. That sounds awful!!! I'm so so sorry.

I didn't understand this:


I have to set the alarm every hour (every two hours at max) or I've got a major problem on my hands. (It's been this way since March.)

I wasn't sure what was going on with you that you had to set the alarm.

It just sounds so hard. I hope it gets better for you soon!!!

Sorry. I was referring to the extremely heavy bleeding I've been having. The answer I keep getting is to continue on the BCPs (which haven't been working - causing bad headaches among things) and get the levels under control. If I don't set the alarm then I get to change sheets, clothes (and sometimes just throw the items away :( ).

I finally got a call today after I called the office back today after I had called yesterday and today with no return calls. I requested to know the levels and refused their memory that I'd been without meds since Friday (since they couldn't get their act together in ordering the lab work). They then call me back again later acting all confused about my previous message. I called at 2 and they called me back about an hour an a half to hour and forty-five minutes later. Do they not check the time on the messages? I loved it when they stated we got the results yesterday...then I should have been called yesterday since I'd made it known I needed to have had the lab drawn so I knew Friday. :rolleyes: They never did tell me the levels even after I requested them.

Smillow
09-19-2007, 06:42 AM
Usawife I have experience with both Hashi's & anemia. You are probably anemic with that much bleeding. Both anemia & a thyroid condition cause heavy menstrual bleeding & the more anemic/hypo you are, the worse the bleeding. I was "prescribed" an OTC iron supplement (12 years ago) to take 2 X a day for 6 months until my iron levels went back up to normal. The supplement is Fergon and I still take it daily (1X). Even if your thyroid is under control you will not feel normal until your iron level is normal as well. I began to feel better very quickly after starting the supplement.
Take care!

miel
09-19-2007, 10:26 AM
USA wife Your doctor does need to consider what would happen to someone in that situation--clearly it seems like anemia would be a strong possibility!

I also wanted to ask you if you have ever considered acupuncture. I realize it is not for everyone but as far as regulating cycles, this works for a whole bunch of people. I'm getting it for thyroid treatment and for fertility. But acupuncture is good for women's health issues.

I'm really sorry you are going through all this. I don't think it is right for your doc to tell you to stay on BCPs if you are getting severe headaches.

usafwife
09-19-2007, 01:47 PM
Usawife I have experience with both Hashi's & anemia. You are probably anemic with that much bleeding. Both anemia & a thyroid condition cause heavy menstrual bleeding & the more anemic/hypo you are, the worse the bleeding. I was "prescribed" an OTC iron supplement (12 years ago) to take 2 X a day for 6 months until my iron levels went back up to normal. The supplement is Fergon and I still take it daily (1X). Even if your thyroid is under control you will not feel normal until your iron level is normal as well. I began to feel better very quickly after starting the supplement.
Take care!

Thanks, smillow. That was what I asked about 4 wks ago but they told me to stay on the new dosage (they had upped it after the bloodwork came back) and have it repeated the week before I needed to refill my script at the pharmacy. So I started calling two wks tomorrow to get them to order it and it took them a week to get it done. I asked repeatedly about getting an iron level checked due to the fact that I was still bruising fairly easily. When I asked about it at my appt in August I was told it was probably just because my metabolism wasn't up to par and give it time. If I was still having it when the labs were redrawn they'd order it. Well, seems that went out the window since the regular nurse is on leave. I don't feel it's (my thyroid) under control now. I'm feeling just like I did before I was ever diagnosed following my DD's birth. It's one of the reasons I decided to take things into my own hands and see about going to the endo. I just wish they would have gotten back to me when I asked about it time and time again.


USA wife Your doctor does need to consider what would happen to someone in that situation--clearly it seems like anemia would be a strong possibility!

I also wanted to ask you if you have ever considered acupuncture. I realize it is not for everyone but as far as regulating cycles, this works for a whole bunch of people. I'm getting it for thyroid treatment and for fertility. But acupuncture is good for women's health issues.

I'm really sorry you are going through all this. I don't think it is right for your doc to tell you to stay on BCPs if you are getting severe headaches.

Thanks, miel. That's what I've been trying to get them to see. I don't know if the messages just aren't getting through to the OB/GYN herself (which I suspect). I feel as though my messages/calls are just being ignored. My mom suggested I write the doc a letter myself and send it to her home or to the hospital so no one at the office opens it. At this point I'm so close to seeing about a hysterectomy or endometrial ablation. I was told that in order to have the endo ablation that I'd have to have a tubal. Well, my OB is in a catholic hospital so tubals and vas' are not possible. She won't even do IUDs in the office (due to hospital regulations) - which is why I was more than a little surprised, shock was more like it, when she gave me a script for BCPs to control the bleeding. The headaches are like the migraines I have gotten in the past which leave me unable to do much when I have one. Not really possible with two small children to take care of during the day.

I'm looking towards Friday when I have an appt with my family doc to discuss things. It doesn't help either that my carpal tunnel has decided to get much, much worse.

Miel ~ I'm sorry about your m/c. I had one as well due to messed up levels. I had trouble with DS' pregnancy at the beginning as well due to the levels being so messed up then as well. I was in a constant state of worry/concern the entire first trimester and then some. I had problems at the end of the pregnancy as well but I don't believe they are related to the thryoid disease (he tried to come at 35 wks, stopped it, spent the next two wks being extremely miserable - putting it mildly - with constant contractions, continuing to dilate, severe groin pain and back pain, and on bedrest. Then all the issues during his birth with both of us. One of the reasons I'm not too keen on going through another pregnancy). I had my levels drawn about every 4 to 6 wks and had appts every 3 wks, then every 2, then every 1 (just one), and then went two twice a week.

AttyGrl74
10-05-2007, 12:56 PM
Caution: complaining ahead.

I had my first f/u appointment with my new Endo on 9/17. I had been on Synthroid 50mcg for 8 weeks, so this was a blood draw. I called his office 4 times to find out the results, got nowhere. Finally today, I realized that my primary care dr. should have gotten a copy - so I called him. Sure enough - on 9/26 they got the results.

My TSH is 1.210 (I was at 4.5 in June, 3.1 in July).

But I still feel like dookie. I'm out like a light by 8pm most nights, no sex drive, etc. WTF?

Part of me wants to take matters into my own hands to up my dosage on my own. I sort of feel like I need to give the Synthroid more of a chance, but maybe Armour is a better option for me?

Unfortunately since I can't get through to my doc, I have no way of knowing what I should do.

And I WISH I could just dump him - but my insurance only covers 3 endos in the entire Denver-metro area and the other 2 are *really* far away.

Katy
10-05-2007, 01:59 PM
I feel for those of you dealing with crappy endos. I've got a great primary and she's totally supportive of tweaking my meds (*giggle* I said tweaking and meds *giggle*). She even handed out a one month sample pack when I asked if we could go up to 75mcg. My numbers are "fine" but I can feel the difference the change in the meds make. Any chance you guys can get more help from your primary?

katzmeow671
10-06-2007, 06:03 AM
And I WISH I could just dump him - but my insurance only covers 3 endos in the entire Denver-metro area and the other 2 are *really* far away.


How far away? Because seriously, I changed endos and can't even begin to tell you the difference in the way I feel now (not physically, emotionally). He listens, he lets me go through my whole list of questions without looking at his watch and he just cares. I would drive an hour to see him if I had to. I haven't called his office for anything yet so I don't know how they handle that but all of his nurses are wonderful and doted over my 2 year old the day I had to drag her with me for bloodwork. The doctor himself wrote a note for my 9 year old daughter so that she would calm down and know I was getting better.

And I totally agree with Katy about checking in more with your regular doc. I see mine in between endo visits (he rocks too) and it helps out a lot. We're moving to St. Louis soon and I hate that I'll have to start this doctor finding process all over again.

miel
10-06-2007, 12:59 PM
USAwife How did your doctor appt. go?

What were your levels when you mc'd? My levels were .07. My doctor insisted this was OK. If it wasn't, I'm not sure I can handle that knowledge but I better find out because I may get pregnant again soon.

Seriously, it would break my heart if my doctor were just an idiot. Did I mention this already? How annoyed she was that I was concerned about my thyroid when pregnant? She acted like I was some kind of crazy hypochondriac. Then she says "Oh, you are at risk of miscarriage because of your autoimmune issues." But of course, she never mentions that something can be done and from the internet I am thinking that something might be able to be done.

God, I would so hate to know that the reason the pregnancy didn't take was something I could have prevented but I guess I have to find out what to do for the next time. I am going to try to find an reproductive immunologist. My hashi's antibody level is extremely high. I have found no good endos. The problem is that you can't see a perinatologist until you are already pregnant.

When you tell doctors you are concerned they act like you are crazy. It's just so weird. Is it sexism? What is it? Why won't they just explain things and help you?

usafwife
10-06-2007, 10:05 PM
AttyGrl74 ~ Have you been able to get anywhere with your regular doc? That's who I went to see after the first internal med doc I was referred to wanted to put me on a drug I felt wasn't safe for me. My regular doc agreed that it wasn't something he prescribed to women who wanted to get pregnant (or have future children). I sort of feel the same way about my current OB/GYN. It's one of the reasons I made an appt with him to discuss things. And another reason I'm going to an endo to monitor the thyroid problem.

katzmeow671 ~ I'm glad you found a doc who listens and cares. My OB/GYN is that way but the office staff is a totally different story. They don't return calls and when you request things they don't bother to answer you. Sorry you have to start the process all over again after the move. Maybe you could get a recommendation from your current docs.


USAwife How did your doctor appt. go?

Well, I haven't had my endo appt yet. And while I did get a referral to another OB/GYN I've had to reschedule the appt due to DH's supervisor being a real PITA. It's not the first thing I've had to reschedule due to them (ortho consult, nerve test, regular doc). They won't let him take vacation or sick days even though he's got them but they will let the guy he works with gets weekends off (something DH hasn't been allowed to have off since July), is allowed to take sick time, etc. And the guy does have the work that DH does. To make matters worse I'm not being tested for possible lead exposure. My liver enzymes were sky high when I had some blood work done. I was sent for a liver sono which came back fine (his work balked at that as well...excuse me for being sick...when it's them that has been where the exposure to lead has come from). I'm awaiting the results now.


What were your levels when you mc'd? My levels were .07. My doctor insisted this was OK. If it wasn't, I'm not sure I can handle that knowledge but I better find out because I may get pregnant again soon.

Seriously, it would break my heart if my doctor were just an idiot. Did I mention this already? How annoyed she was that I was concerned about my thyroid when pregnant? She acted like I was some kind of crazy hypochondriac. Then she says "Oh, you are at risk of miscarriage because of your autoimmune issues." But of course, she never mentions that something can be done and from the internet I am thinking that something might be able to be done.

God, I would so hate to know that the reason the pregnancy didn't take was something I could have prevented but I guess I have to find out what to do for the next time. I am going to try to find an reproductive immunologist. My hashi's antibody level is extremely high. I have found no good endos. The problem is that you can't see a perinatologist until you are already pregnant.

When you tell doctors you are concerned they act like you are crazy. It's just so weird. Is it sexism? What is it? Why won't they just explain things and help you?

I'm not exactly sure what my levels were when the m/c happened. I thought I had a copy of all the lab values (I will before I go to the endo appt). The free T4 about 3 wks before the m/c was 0.88. But I've found my numbers are on a roller coaster so they are up and down very often. That's the number one reason I'm going to the endo. I can't keep going up and down like this. I had a jacket with me when we went out tonight. No one else was cold but I was. DH was wearing shorts and my mom was warm. Here I was in the jacket while eating.

As far as docs who act like you are crazy I don't know. I had one just this past week tell me that. I went for my EMG/NC test and the guy looked at me and said "it's all in your head. You don't have CTS. The braces aren't going to do any good." Well, the braces were working but the numbness, tingling, and pain have gotten worse. "Pain isn't part of CTS. Just the numbness and tingling." Hmmm, that's different that everything I know about CTS and have read about it. I'm not some dumb person you are talking with here guy. I've been around the medical profession pretty much since the day I was born (how could I not and have a parent who worked in the hospital for 35+ years) and do the kind of work I do and not know a lot of things.

After the test I just felt like I wanted to cry. It was a painful test (not so much the shocks but the sticking the needles into my muscles). And my thumbs still hurt five days later. I felt like it was a waste of our time, gas, drive, $$, etc. I guess they like to think that you are stupid and don't know any better. As my mom said, it's not the proper thing to tell a patient "it's in their head" even if that's what they may believe. She saw or read something in which a woman was told that and she stopped going to docs and come to find out she did have something really wrong but they didn't find it until years later. I've been told it before but they all ate their words when it was determined it wasn't in my head and I actually did have something wrong. I do know that I'm not going back to him ever again. Even if they want something else, I'll go to another neurologist. He made me feel as though I was scum of the earth, didn't know what I was talking about. He kept asking me if my hands were always that cold. Umm, yeah they've been that way for a while. The test did show I had nerve damage until they adjusted the temp and then things suddenly became normal.

Neen
10-16-2007, 10:06 AM
FYI, on today's Oprah, she is going to talk about her thyroid issues. But be aware, she is having a Dr. Christine Northrup on there as her "professional" and she says that tyroid problems are caused by women not expressing their feelings and that we should eat more soy.

Should be interesting.

miel
10-16-2007, 07:33 PM
Oh God, Oprah. I worry about the misinformation she spreads.

trestlegirl
10-16-2007, 09:18 PM
Yowza. I had never heard of this Christine Northrup chick before...So my thyroid cancer was caused by holding in my feelings? Whatever :rolleyes:

Mary Shomon has a very nice response to the show up on her blog.
http://thyroid.about.com/b/a/257479.htm

Neen
10-18-2007, 08:01 AM
I was just coming to post Mary Shomon's response! What a disservice Oprah has done for thyroid patients. I was reading the message boards at Oprah's site about the show and there are very mixed reviews.

I really want to know what "normal" woman can go spend a month at a mansion in Hawaii and drink soy milk all day and do NOTHING! Not in my world. And plus I wouldn't touch soy with a 10 foot pole!! I know the people over at about.com have been trying to get Oprah to do a show on thyroid disease for a long time, and this is what they get??

usafwife
11-29-2007, 10:43 PM
Hey ladies. I had my appt with the endo this wk. She said based on the last TSH level it's suggestive that I may do better on a higher dosage of the meds. I'm having a bunch of blood work done to see what the levels are as well FSH and other things (have to check the order for everything). She also said that I may fall into the group that needs both T3 and T4 meds.

She gave me two scripts to see if they help. Anyone on Spironolactone or Wellbutrin? The Wellbutrin is to help with my energy level since it's very low and the side benefit is that it may help to lose some weight which I haven't been able to do since DS' birth.

I really liked her and the appt lasted 1 1/2 hour. She went through my entire history of how I developed hyperthyroidism and then became hypothyroid. I finally feel like I may finally have a chance to feel like my old self again.

I had a hysterectomy due to extremely heavy periods that just became too much to handle. I often wondered if my hormone levels were just totally screwed up that is what caused everything to go haywire. The anesthesiologist who put me to sleep for the hyst said that it could have been the problems and now that it was getting removed things might get better (have to ask my mom since she talked to her while I was still out). It was a hard decision to make but it was just controlling my life and preventing me from doing things with my family.

miel
11-30-2007, 07:13 AM
I'm so glad you found a good endo USAwife! So sorry you had to have a hysterectomy but it sounds like a very good decision in the end. I hope it makes everything go back to normal. Keeping my fingers crossed your thyroid gets its act together now you've made this change.

usafwife
12-14-2007, 01:21 PM
I'm so glad you found a good endo USAwife! So sorry you had to have a hysterectomy but it sounds like a very good decision in the end. I hope it makes everything go back to normal. Keeping my fingers crossed your thyroid gets its act together now you've made this change.

Thanks. Unfortunately I found out today that my upcoming appt got canceled. I'm waiting to find out more information but it looks like I'm going to have to find another endo. :mad: I finally get someone that I think can help and then they leave. It's just so frustrating especially since I haven't even heard back regarding my bloodwork done earlier this month. I was suppose to be changed to a higher dosage but who knows now.

It's just yet another roadblock in my life. I swear the past 16 months or so have been one thing after another. Hopefully we'll hear something good concerning DS' echo but from my past experience as well what others have said it looks like we're going to be dealing with a heart condition.

bug
01-07-2008, 06:53 PM
Ladies--I need some help please and hopefully someone here has some input.

Question: Regarding periods. (Sorry if TMI) In the past I have had spotting both before and after a short (2-3 days of flow) period. Has anyone experienced changes in their cycles once they got their medications worked out? Is this normal?

My last 2 cycles have been SUPER heavy, like ridiculously so, and longer, but with barely any spotting. I was diagnosed with Hashimoto's August and have obviously since been taking meds, I started at 50. In Oct the dosage was increased to 75 mcg and then in Nov to 88, so I'm assuming that the meds are the cause, since nothing else has really changed. We are TTC, and I've also noticed a delayed temp jump several days after EWCM is passed, not coinciding like I would expect. I'm curious about that too, but mostly to see if the heavy period is something common and something that I should get used to?

Thanks!

L and L
05-20-2008, 01:50 PM
Hi Ladies,

I'm bumping this up because I just found out today that my TSH level is quite high (8.42 to be exact) and I have an appointment with my primary care doc on Friday to discuss the test results and what to do next.

Any questions I should make sure to ask? Do most of you see an endocrinologist or work with your primary doc for treatment?

Thanks!

sublime311
05-20-2008, 10:15 PM
I see my PCP for my thyroid care. About.com (http://thyroid.about.com/) has an excellent thyroid disease forum. Most of what I know about the disease, I learned there and from reading Mary Shoman's book, Living Well with Hypothyroidism (http://www.amazon.com/Living-Well-Hypothyroidism-Doctor-Revised/dp/0060740957/ref=sr_1_1?ie=UTF8&s=books&qid=1211346730&sr=8-1).

Good luck!

miel
05-25-2008, 10:25 PM
Although I am not hypo (yet...I may be at some point b/c of antibodies) my doctor put me on 50 mgs. of levothyroxine to prevent miscarriages.

Is this synthroid?

Last time I went on it my eyes got so ferociously dry they were injured, my blood pressure went up. And that was only 25 mgs.

The reason I have to be on it is that there is a study that thyroid issues cause miscarrriage b/c your thyroid is not steadily producing the right amount (although I seem to always test at .98) all the time. You don't have a steady state in the blood.

So...are there any thoughts on Armour Thyroid v. levox? I just hear such nasty things about synthroid. I don't even know if it is synthroid that I am on.

I have a feeling I'm not going to be able to tolerate it given the fact I couldn't handle 25 mgs. before and now I'm on 50.

I trust this doctor and his reasons. I have two mc's and I don't want any more. However, as we all know doctors know jack about the thyroid and this is an RE. They know even less than endos.

Should I try to go on Armour instead?

I wish they would just figure out something to do about the antibodies. It's funny that there is never anything they can do about them. You just have to wait for them to screw you up.

Yolanda
05-26-2008, 09:16 AM
miel-levothyroxine is Synthroid's generic brand, but if you start on the levothyroxine, you should stick with that and not jump back and forth-I was told that each with react differently (ex. if you are on 50mgs of the Levo, it might be a little diff. with Synthroid). That could be wrong, but that's what I was told.

I'm certainly not a Dr., but I don't understand why he/she would put you on thyroid meds if you levels test out perfectly fine??:confused: If your levels are fine, I don't see how your m/c could be caused by your (fine) thyroid levels.:confused:

I currently take 50 mgs of levothyroxine.

bug
05-26-2008, 05:39 PM
L and L--I second what sublime said. That book and website are great resources. I switched from my primary care dr. b/c he is an ass & when I asked a bunch of questions (that I mainly had from reading that book) he was dismissive & uninformed. He didn't know that there was a newer range established in 2002, he was still going with the old levels & was basically, "here take a pill & go away". I see an Endocrinologist & have my TSH tested every 6 weeks. I started at over 9.6 last August. I also see her b/c I was TTC.

Miel--what Yolanda said about Synthroid & Levo is true. You shouldn't switch back & forth. I too wonder why you are on Levo to prevent miscarriage? From my expericience, this is not the case. My level was down to 3.2 when we TTC successfully with IUI treatments ( IUI due to other issues). This rate was up by 1.2 points in a month, & I am surprised we were successful conceiving with that high a rate (I believe 1-2 is the target range). I found out at 11 w 5 days pregnant (on 4/15/08) that my daughter had died and didn't develop past 6 w 1 day. By coincidence, my TSH was drawn on 4/14 & the level was 4.376, which increased by 2 points from a month earlier.
Could you point me in the direction of the study you mention? The genetic testing we had done on my daughter revealed no cause for the miscarriage, so right now, I am blaming my thryoid. :mad::mad::mad:

Oh--does anyone have any insight into the question I posed about really heavy periods once thryoid is under control? Has that happened to anyone else? (Sorry, I know it's TMI).

Smillow
05-26-2008, 07:14 PM
bug - regarding heavy periods - they can be caused by being hypo & lead to anemia, which in turn causes heavy periods.... So make sure you are taking a good iron supplement. When I have neglected to take extra iron, I pay for it with a ridiculously heavy period!

miel
05-26-2008, 09:37 PM
Bug Have you been tested for anti thyroid antibodies? I have a LOT of those. I have both kinds. There is a study that says it is beneficial for those with ATAs to take thyroid medications because your thyroid levels are not even (this is what my RE told me). This will lower your chance of miscarriage.

I do not have the study. I don't know what it's called. However, I read another study that says that ATA's (which damage the thyroid) may cause less damage when people take levox. This might be because levox regulates your thyroid levels. The ATAs make your thyroid behave erratically, even though your levels are not hypo or hyper. (I was previously hyper but have now gone to normal).

I have actually been told by two doctors--my RE and my regular endo-- to take levox to prevent miscarriage even though my levels are normal but this area is new. The study is supposed to be very good. However, there seems to be only this one study. It is worth a shot, though.

It's kind of weird to take levox when I was so close to hyper and have never been hypo but the issue is regulation. Because the ATAs destroy the thyroid, I am most likely going to go hypo eventually. I have Graves's and Hashimoto's antibodies but it's really the Hashimoto's that are a very high number.

I didn't plan on switching back and forth. But since I am just starting levox now I was wondering if I should try Armour thyroid since so many people say it is better?

Since I don't have a problem with my levels and I am only taking this as a preventitive thing, I thought it might be better to go with the medicine I read is better?

But I have also read that doctors are reluctant to prescribe the Armour thyroid. I don't know why that is. Because the evidence for its better effectiveness is anecdotal.

On another issue, I have heard that levox causes weight gain. I think my thyroid may be partially responsible for my weight issues, since I cannot seem to lose weight. I have to eat a special diet to prevent weight gain but the diet does not cause weight loss. A few years ago, I would have lost weight easily eating /exercising like I do. Now I do this to not gain weight.

By the way, I suspect that acupuncture may have played a role in helping my thyroid go back to normal. I don't have evidence for this. It's just that when I did acupuncture regularly, it got better and is stable--as long as I do acupuncture. Which is expensive...but since I want a baby, I pay for it.

Oh, one more thing about Chinese medicines: I had heavy periods and take herbs prescribed by a Chinese doctor and my periods have become rather light. I had very heavy periods when I was hyper, which is not usual I guess. But now they are normal again. So I would recommend Chinese medicine for this issue if you feel like trying it.

bug
05-27-2008, 07:28 PM
Smillow--I have been anemic in the past, so I guess it couldn't hurt to get my iron checked again. I was taking a prenatal w/iron, but maybe I need more.

miel--thanks for the long reply! First, good luck TTC. I hope you find success quickly. I will google for studies on m/c & thyroid, but will also ask my endo. I do have Hashimoto's & can't recall my # of antibodies, but somewhere around 500 sticks in my head. That was tested last August when I was diagnosed. From what I understand, nothing can be done to fight the antibodies, but I wonder if they increase.

As for Armour vs Synthroid, I am on 112 mcg of Synthroid. I asked my Endo about this at my last appt, and she said basically she will go either way, but usually starts patients on Synthroid & then if they have side effects she will try Armour. She said also if patients request Armour, she will do that with no problem. What she was adamant about was not using generic levothyroxine, but only going with the name brand. Essentially, it was to know exactly & continuously what the ingredients in the pills are.

As for acupuncture, I firmly believe that can yield great results. I may try it for periods. I'm going to watch & see for a few months what happens, but these last 3 cycles (1 post m/c & 2 before pregnancy) were just insane.

On the weight issue--you are not alone. It's definitely more of a struggle now. Ugh.

lunaria
05-29-2008, 09:29 AM
Ok ladies.. I need your advice.

First my symptoms and then I will explain more:

Fatigue/weakness - Oh lord, I sleep 10 hrs a night and could nap everyday on top of it.
Weight gain or increased difficulty losing weight -Had weight issues since forever! I have gainged aobut 40 lbs in one year while dieting and exercising
Hair loss - Yup, thought it was a post partum ting.. 2 years later, it is still falling out
Constipation - Nope, thank god
Depression - Was on AD for about 6 months.. just weaned off of them 2 months ago
Irritability - Umm, yeah
Memory loss - Not to bad
Abnormal menstrual cycles -No, very regular (always 28 days) BUT one moth I spot, other month I bleed like a stuck pig.
Decreased libido - Poor Dh, yes :(
Cold Intolerance: VERY VERY bad... always freezing. Hand and feet crazy cold.
Swelling of hands and face: I look like I am a steriod patient. My face is very puffy. My hands swell so bad, I cannot wear my wedding rings lately.

Lately, I have also been noticing a "lump" in my throat. Like there is something stuck there. I will have it for a few days and then it goes away. There is something on the left side of my throat when you push on it. It is kinda gushy and rolls around like alittle pebble. (and its not a lymph node.. it is much closer to my trachea) It doesnt hurt to push on it but that is where the lump is in my throat.

I have always been told, "oh, you sound like you are hypothyroid" and then my TSH levels are always normal. Last year, my levels were 3.8. I have been on a strict diet and excercise routine since Jan of this year and I have gained about 10 lbs since starting it. I am at my wits end. I have a friend who is a P.A. and she told me that the "new" scale is anything over a 3.0 with symptoms. Is that true? Hypothyroid also runs in my family.

I finally made an appt with a family practice doc today. What should I tell her when I see her? I dont have a doc here because we just moved here a little over a year ago and I have only seen the Gyno since being here. The gyno told me I need to workout more and eat less. I was ready to kill him.

Any advice you guys could give would be greatly appreciated.:)

Smillow
05-29-2008, 10:31 AM
Lunaria - have your doctor test you for thyroid antibodies my Dr. tested mine after many dr's and TSH readings from 3.5 - 4.5 and they (the antibodies) were off the charts. She put me on Levoxyl and alot of my symptoms have abated. If you do have antibodies present (Hashimotos) you will eventually need total thyroid replacement hormone. My dosage has had to keep increasing in order to keep it in the 1.0 to 2.0 range that is ideal.
Good luck!

edited to add: Hashimotos can cause infertility & increased risk of miscarriage.

lunaria
05-29-2008, 10:54 AM
Lunaria - have your doctor test you for thyroid antibodies my Dr. tested mine after many dr's and TSH readings from 3.5 - 4.5 and they (the antibodies) were off the charts. She put me on Levoxyl and alot of my symptoms have abated. If you do have antibodies present (Hashimotos) you will eventually need total thyroid replacement hormone. My dosage has had to keep increasing in order to keep it in the 1.0 to 2.0 range that is ideal.
Good luck!

edited to add: Hashimotos can cause infertility & increased risk of miscarriage.

Okay. No one has never tested anything but my TSH. What are the symptoms of Hashimotos? DH and I are currently dealing with infertility but it is because of DH, not me. Well, the RE told me last year I was fine but he never checked my thyroid. I have noticed my symptoms are much worse since having my son.

Thanks for the insight:)

Smillow
05-29-2008, 06:20 PM
From Mayoclinic.com:
Hashimoto's disease does not have unique signs and symptoms. The disease typically progresses slowly over a number of years and causes chronic thyroid damage, leading to a drop in thyroid hormone levels in your blood. The signs and symptoms, if any, are those of an underactive thyroid gland (hypothyroidism).

The signs and symptoms of hypothyroidism vary widely, depending on the severity of hormone deficiency. At first, you may barely notice any symptoms, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as the disease progresses, you may develop more obvious signs and symptoms, including:

* Increased sensitivity to cold
* Constipation
* Pale, dry skin
* A puffy face
* Hoarse voice
* An elevated blood cholesterol level
* Unexplained weight gain — occurring infrequently and rarely more than 10 to 20 pounds, most of which is fluid
* Muscle aches, tenderness and stiffness, especially in your shoulders and hips
* Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
* Muscle weakness, especially in your lower extremities
* Excessive or prolonged menstrual bleeding (menorrhagia)
* Depression

Without treatment, signs and symptoms gradually become more severe and your thyroid gland may become enlarged (goiter). In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed.

lunaria
05-30-2008, 07:54 AM
Thanks Smillow. I have lots and lots of those symptoms.

jenji
06-02-2008, 05:33 AM
so you can have normal T3, T4 and TSH levels and still benefit from being on thyroid replacement hormones if you have Hashimotos antibodies? Am I understanding that right?
(for the record I have hashimotos and go to an endo for it and am on synthroid and doing great, but my mom has ALL the hypo symptoms, but her TSH and thyroid levels are fine)

Smillow
06-02-2008, 05:53 AM
Jenji-
I think that it is the concept of TSH levels that are "fine" that is the crux of the issue and can be hotly debated. More than doctor reading a test result where my TSH was 4+ said they were "normal." But I know what normal feels like and I was not feeling normal! My new endo says that what's normal for an 80 year old is decidedly not normal for a 30 year old and those "normal" lab readings take into account everyone, but shouldn't be applied to everyone. I can tell when my TSH is out of whack - the hair on my legs stops growing, my skin gets crazy dry & my oily hair gets like straw! You may have to actually call around to find a Dr. who will treat a TSH below "normal" lab limits.
Good luck!
p.s. My endo says with the antibodies, it is just a matter of time - the thyroid is being attacked and TSH will slowly elevate.
p.p.s. I take a selenium supplement because it is supposed to support thyroid health.

Esq.
06-02-2008, 06:42 AM
jenji- I had a eck of a time finding a doctor who would even run a test beyond the basic TSH. My TSH would come back fine, and that would be it. After about three years of trying to find someone, I finally found a dr who ran the entire screen. My antibodies were through the roof. He was a naturalist, and, while not an endo, he had a lot of thyroid patients. He put me on Armour. I have since started seeing an endo, who has me on Synthroid. But both of those doctors told me that they preferred to treat when antibodies are present, bc TSH will swing back and forth. The highest my TSH has been is 5, but when I am treated it is a little less than 1. That is where I feel best, and I can't achieve that without medication.

lunaria
06-02-2008, 07:21 AM
Jenji-
I think that it is the concept of TSH levels that are "fine" that is the crux of the issue and can be hotly debated. More than doctor reading a test result where my TSH was 4+ said they were "normal." But I know what normal feels like and I was not feeling normal! My new endo says that what's normal for an 80 year old is decidedly not normal for a 30 year old and those "normal" lab readings take into account everyone, but shouldn't be applied to everyone. I can tell when my TSH is out of whack - the hair on my legs stops growing, my skin gets crazy dry & my oily hair gets like straw! You may have to actually call around to find a Dr. who will treat a TSH below "normal" lab limits.
Good luck!
p.s. My endo says with the antibodies, it is just a matter of time - the thyroid is being attacked and TSH will slowly elevate.
p.p.s. I take a selenium supplement because it is supposed to support thyroid health.


Thats crazy! I swear (ppl think I am crazy) that the hair on my legs stopped growing and my hair falls out in by the handfuls. I have just been told "its a hormone thing". One month my hair is fine and I am shaving every other day and the next, I dont have to shave and I am about bald. Is that because my levels are swinging back and forth? My hair is thinner than it has ever been... thank goodness I had a lot of it :) My hair is like straw but I blamed that on moving from Florida to New Mexico... 90% humidity to 5% humidity.

I see the doc next week. If this one wont help me, I am going to see a doc who specializes in eastern and westwern medicine. Her speciality is thyroid problems that are not dx thru a normal doctor. Prob is she doesnt take insurance so it will be out of pocket.

Sevilla
06-06-2008, 05:48 AM
Thanks :).

lunaria
06-11-2008, 02:45 PM
Well Ladies.. I reaaallllyyy need your help.

I went to the Gp doc today. First time I have seen her and it will be the last for sure. I told he about my 40lb weight gain in the last year and some of my problems. She did not want to hear about ANY symptoms and was rather rude. She agreeded to do a TSH, T3 and T4 but down right refused to do any antibody testing. She told me she wont test for those unless my other levels are off! She also agreeded to do a ultrasound of my thyroid but said she didnt see the need in it. BuT.... here is the kicker..... she told me I was in denial and I needed gastric bypass!!!!!!!!!!!!! UMMMMM I am overweight but I dont weight 300 lbs! And then she told me that since I had a bout with depression last summer, that I needed Prozac!!! She told me that depression comes and goes and she would feel better if I was on it. Also, she told me that prozac was weight neutral and that is sooooooooo far off base. Needless to say, I left the office crying my eyes out.

I called a local endo when I got home who also has a medically supervised weightloss clinic in his office. The girl I spoke with felt so bad for me, she squeezed me in next week (typical wait to see him is 3-4 months). She was floored when I told her how I was treated. She said he will spend about 30-45 mins with me and will run every test in the book... he also treats for hypothyroid even if your #'s are in the "normal" range.

Now, what should I be asking him and/or telling him.?? What things should I be looking for in my lab work? I am just so darn frustrated and I am tried of feeling like sh*t. I felt like some chewed gum on the bottom of your shoes when I left that Dr's office today. I couldnt have felt worse if I tried.

Thanks ladies:)

bug
06-11-2008, 03:08 PM
Lunaria First of all, SHAME on your Dr. Mine was the same way practically & he is no longer my Dr. I also left the office in tears. It's a HORRIBLE way to feel, and I am so sorry that it happened to you. It happened to me b/c my Dr. is an incompetent ass, who is not well-versed in Hashimoto's & couldn't answer the questions that I asked him after researching it.

Have you got any books on Hypothyroidism? From what you have posted, you have all the symptoms. The thing with Hashimoto's and Hypothyrodism is that the symptoms when taken separately can be attributed to other things. Feeling cold--poor circulation, weight gain--eating too much, stress, etc., tiredness/lethargy--stress, overworked, etc. Brain fog--old age, stres, etc. Anyway, you get my point. You are being tested for the right thing. There is nothing that can be done about your antibodies, but it's a good idea to know them anyway to monitor later on.


Now, what should I be asking him and/or telling him.?? What things should I be looking for in my lab work?
Tell him all of your symptoms. How long you have felt this way. When you started gaining weight, what your periods are like, if they have changed at all, any skin/hair issues, etc. Basically, if you come back over the normal range, all of your symptoms can be attributed to your thryoid being out of whack. If you are planning a pregnancy in the future, you need to tell him that too, and when & DEMAND that your levels be monitored every 6 weeks at least and that you start at a range of 1-2. Ask about his method of treatment--what drugs does he use--most likely Synthroid ask about Armour. Be sure to tell him about any of your vitamins or other drugs for interactions--like you can't take iron w/in 4 hours of taking your pill. If you are positive for the disease, you will be taking a pill every morning for the rest of your life (most likely--note, I am NOT a Dr & am not trying to give out medical advice, just telling you based on my experience).

Also, be prepared for it to take a LONG while for your thryoid to get regulated. Mine started at 9.6 last August, and just last week was at 0.8%, but it took 5 increases in Synthroid for it to get to that level.

Good luck to you. I hope this helps. Hugs.

Smillow
06-11-2008, 03:19 PM
Lunaria - I am so sorry you had to put up with that! I have been there and it sucks. Try & erase that dr's visit from your memory. It sounds like your new endo will help you - that is good news! Write down all of your symptoms & have the Dr. put the list in your file. Good luck next week. I was so happy when I finally found an endo who knew what she was talking about. That alone made me feel 100X better!
{{{HUGS}}}

lunaria
06-11-2008, 04:06 PM
Bug- WOW! Thanks for that:D That stupid (I want to call her the C word but I wont) DR told me that antibodies do not mean anything. She also told me Hashi's only starts when your #'s are out of wack... before then, it means nothing. I asked her if my TSH "could" be swinging back and forth because some weeks my symptoms are out of control (hairloss, nails and hair wont grow, BAD cold intolerance, weight gain, brain fog, mood swings, crazy periods) and other months, I seems to be Okay. She told me no way, she has never heard of such a thing. Nice huh? When I told her about my "moon face" (my face looks like I am on mass doses of steriods), she said she was going to check my cortisol. I told the nurse at the Endo's office that and she said that was the strangest thing she ever heard. I KNOW dont have Cushings. I would "think" at age 34, I would know by now if I had that. I am going to buy a few books by Mary Sholom (I tihnk that is her name) and read up before next weeks appt.

Swillow- awww, thanks:) I am going to write everything stinking thing down before I go see him.. EVERYTHING. His nurse said there are lots of Metabolic disorders that can cause these symptoms but my thyroid seems to be the first on the list.

Quick question... Will my hair ever grown back? I used to have Nice straight, shiny, think hair... now its sooooo bad thin (I mean real bad), dry and dull. AND will this fatigue ever get better??

THanks again ladies:D

miel
06-11-2008, 07:04 PM
Lunaria

Wow, that doctor is so misinformed. I am on thyroid medication b/c of my antibodies.

Also, prozac is known to be HORRIBLE for weight. Don't go on prozac.

Find another doctor.

Also, you can't even get a gastric bypass unless you are 100 lbs. overweight. And that's major surgery.

Your doctor is crazy. Some doctors are just dumb. It's weird because you would think since they have to take so many exams and such they could not be dumb. But what I think makes them dumb is that they don't know when they don't know something. They just make things up or discount what patients tell them, etc. It's like--you cannot know everything! Why not just admit that? Maybe too lazy to do research on specific patient issues? Any good doctor should.

lunaria
06-12-2008, 11:30 AM
Lunaria

Wow, that doctor is so misinformed. I am on thyroid medication b/c of my antibodies.

Also, prozac is known to be HORRIBLE for weight. Don't go on prozac.

Find another doctor.

Also, you can't even get a gastric bypass unless you are 100 lbs. overweight. And that's major surgery.

Your doctor is crazy. Some doctors are just dumb. It's weird because you would think since they have to take so many exams and such they could not be dumb. But what I think makes them dumb is that they don't know when they don't know something. They just make things up or discount what patients tell them, etc. It's like--you cannot know everything! Why not just admit that? Maybe too lazy to do research on specific patient issues? Any good doctor should.

Miel-

That is what I thought re antibodies... I read many stories of ppl being put on medication because of them. She just needs to quit practing medicine.

As for Prozac.. I AM NOT DEPRESSED! That is the funny part. I actually feel better emotionally than I have in a long time. I have been excercising 5-6 days a week since January and it has made a huge difference in my personality. Granted, I am still tired all the time and I am frustrated because I cant loose any weight but I am not depressed. I know Prozac is prob the worst for weight gain and she is just to damn dumb to know any better. I was on Cymbalta for 6 months and I "thought" that was what was causing my weight gain. I went off of it in Jan and started to excercise A LOT. That is the thing with all my symptoms... I could always blame them on something but never did I once think they were all related. Oh well, I am excited to see the new endo next thursday:)

lunaria
06-17-2008, 12:47 PM
Okay ladies... I called the GP's office to get my lab results.

TSH- 1.96 (WOW!, it is always 3.5-4.5)

T4- 1.3

T3- 1.63

Cortisol- 10.8

I am thinking that the T3 and T4 are Free but I am not sure.

Any insight?

Also, should I just tell the Endo on thrusday that I dont have my labs and get him to run them again or take him these? I am still blown away by my TSH. I have never ever had one lower than 3.5..

jajacobsen
06-17-2008, 01:40 PM
I would give him these and ask that he run them again.

lunaria
06-17-2008, 03:30 PM
I would give him these and ask that he run them again.

I am going to. From the little research I have done, Isn't my FT3 low? The GP's office told me everything was normal but that is not what I am finding online. Anyone out there know what normal Free T3 is and what causes it to be low?

miel
06-25-2008, 03:12 AM
I don't know enough about anything Lunaria but it's great that your TSH went down. Isn't it??

I'm taking synthroid like I said. There was this discussion about it here because I have normal TSH, T3 and T4 levels and yet I take it to prevent miscarriages. New medical data, etc. that says women who miscarry and have high levels of ATAs should take synthroid. I've heard this from two highly trained specialists independently. It sounds weird but the doctor showed me the study and said it was very well designed.

I think I might be hyper now. I can eat ANYTHING I want and not gain weight! This is how I used to be, about 6 years ago. I used to have a stable weight (not skinny, just average) and then could eat whatever I wanted pretty much. If I wanted to be thin, obviously I could not. Then I could not eat anything without gaining weight. Having lived on this super restrictive diet for so long, I admit I went a bit crazy when I suddenly could eat bad foods again!!! I've had to watch my weight so much for the last 4 years or so and never can eat any deserts or things like that. But I think now I'll go back to eating healthily again and perhaps I'll actually lose weight. ;) All this bad food is making me feel a bit sick. I did lose a few pounds. Odds are I am hyper and when I move to a lower dose, I'll lose this.

Would it be weird for the synthroid to give me a goiter? I have a lump in my throat, my throat is sore and there is a pinging feeling in there. Anyway, just saying synthroid hasn't messed me up in any other way. Luckily.

If I'm not hyper, then I will assume that it really IS my thyroid that is causing my weight issues. Very atypical, this thyroid thing for me. I have the hashi's antibodies. Huge amounts at one point--but also the Grave's in a very small amount and yet my thyroid went hyper, not hypo. I think hashimoto's antibodies might cause one to gain weight even if you are not hypo yet? Eventually, given the massive hashimoto's antibody count I will probably get hypo. Time to take reeeaaaalllly good care of myself. Like I never do...because of my job. Diet I have been so good on and now I'm falling off on that!

Since they know so little about the thyroid, I think people assume that TSH levels are the main thing. But I really wonder about that. Maybe the antibodies themselves do odd things to us? Who knows?

Curious. I'll get tested on Friday and see.

dragonfly28602
06-25-2008, 04:00 AM
Wow. I can't believe I haven't found this group before.
My DH is slowly recovering from hypothyroidism. Apparantly his thyroid stopped working according to the Dr.
To make a tremendously long story short, when a Dr. FINALLY diagnosed him his TSH was 108 on Feb 14, 2008. He couldn't wake up. He slept 23 hours out of the day. Froze all the time. Dry skin. Weight gain. Had so much edema, he didnt' look like himself. Depression and anxiety. What a nightmare.
Now, all this time later, its down to 12.56. Still have a way to go tll normal. They just upped his generic synthroid to 150 mcg.
But I have a question. Has the thyroid meds messed up anyones appetite or stomach> The Synthroid caused him stomach upset and loss of appetite. Now the generic, the symptoms are less, but still present. I just wonder if that willl ever go away for him.
Kara

dragonfly28602
06-25-2008, 03:13 PM
Well I called the dr to find out why they upped the medication and it turns out his level went back up to 19. I have no clue why. He takes his meds every day. They left me a voicemail so I didn't get the opportunity to ask a question. I will call back tomorrow.

bug
09-08-2008, 04:56 PM
Does anyone know how low TSH can go? I need to get out my Living Well With Hypothyroidism book, but I thought I'd ask here too. My TSH is now 0.2. Doesn't this technically qualify now as Hyperthyroid?

At the end of May, my TSH was 0.8. This was down from 4.32 in mid-April (2 days before I found out I was miscarrying). This past Tuesday, my TSH was 0.2, so it had dropped 0.6. In the year that my TSH has been tested, I've never been well regulated. I started out at over 9 in August, was down to 2.3 when I conceived in Feb. Now that it is down so low, my Endocrinologist has decreased my meds, so we'll see what happens in a few months.

If anyone can shed any light or similar experiences, I'd be grateful. I just want to have my levels regulated already!

jajacobsen
09-08-2008, 05:39 PM
Well I called the dr to find out why they upped the medication and it turns out his level went back up to 19. I have no clue why. He takes his meds every day. They left me a voicemail so I didn't get the opportunity to ask a question. I will call back tomorrow.


Dos he take his meds the same time every day - ideally first thing in the morning hen your stomach is empty. And then not eat or drink anything (except water) for 1 hour? Fruit juice sand calcium (along with most foods) can really interfere with the absorption of levothyrovxine (which is the chemical name of synthroid and how it is known in its generic form). I have been a thryoid patient for 12 years and have had much success with this regime. However, in talking to otehr patiemts, I find that taking it at different time sof day or consumption of food (or beverages such a scoffee) are often culprits.

Just a thought. Please let me know if you hav had any success in getting it regulated.

Smillow
09-12-2008, 08:49 AM
Bump for Maggi

solongtogo
09-12-2008, 09:22 AM
I've had thyroid problems for the better part of my life and I'm here to say if you've had them, make sure you get a test done following the birth of your child. I didn't and felt like crap for a long time, then finally went to the doctor who ordered one. My TSH levels were at 10 (normal is around 4). It's back down to normal now, but it's on the low side, so I need to retest again in a month.