Thyroid Disease: Ain't Life Gland!

**sublime311** · 08-09-2005, 01:41 PM

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!

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.

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

). 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.

**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

Originally Posted by calliope_muses

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

Originally Posted by sublime311

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

Originally Posted by sublime311

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 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

Originally Posted by calliope_muses

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 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!

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.