I was diagnosed hypothyroid almost twenty years ago. My sister was diagnosed first, which prompted my other sister and me to be tested. We were all diagnosed within about six months of each other. My dad has it, too, and 80% of his side of the family ...aunts, uncles, cousins. I was pretty much a lump of clay when I was diagnosed, and my brain fog had gotten very bad, but I responded very well to Synthroid. Still, I don't feel I have normal energy levels, but that is something I have come to accept.

About ten years later, I started having all sorts of problems...neurological and more. I was thinking perhaps it was some sort of thyroid problem flare. Several years and eight specialists later, one finally uncovered my B12 deficiency. It is presumed I have another autoimmune disease, pernicious anemia (causes B12 deficiency due to lack of intrinsic factor needed to process B12), although the antibody tests associated with PA were negative for me as they can be up to 25% of the time.

There is only one autoimmune disease with known cause and that is Celiac Disease, caused by an abnormal immune system response to gluten (found in wheat, barley, rye), and the only treatment is a strict gluten free diet. There is growing evidence that gluten (and casein/cow's milk) sensitivity may play a role in other autoimmune disease as well. In fact, there are some cases where a gluten free diet begun very early in the course of autoimmune thyroid disease... has actually reduced thyroid antibodies back to normal. This is not the norm, but the idea is that early identification and treatment of gluten sensitivity might prevent other autoimmune disease. There are sporadic reports of other autoimmune disease resolving or improving on a gluten free diet (like RA, Lupus, MS). The research is early, but quite interesting. There is an enzyme called zonulin which regulates the "tight junctions" in the intestinal wall, and they have found people with celiac disease, diabetes, MS...all have too much zonulin. They think perhaps the 'leaky gut' results in food sensitivity because the food proteins leak out to where they don't belong, causing an abnormal immune response to mount.

You might find The Gluten File an interesting read. Just browse the right bar for information that may pertain to you or interest you. People with autoimmune thyroid disease are at higher risk of gluten sensitivity/celiac disease (and they think the gluten sensitivity probably comes first, but gets diagnosed last)~ and you will find a page devoted to studies about thyroid disease/ celiac disease. I have a page about zonulin in The Gluten File, too.

Cara

Thanks for the reply.
I read in a book by Dr. Rhida Arem, who is a professor (Baylor,in TX) and endicrinologyst, that stated, diabetes, lupus, hashimoto's, and celiac are all autoimmune diseases. I read it in one of those free handouts found in my doc's waiting room.
Oh, and I believe on one of the thyroid websites, can't remember which one, I've been googling so much, I read that.
Whatever, I know any of this is horrible to live with.
I hope you feeling well, and if you can share anymore thyroid info. I'd appreciate it.
Thanks so much,
DE

Do you know about About.com thyroid forum? I guess if you found a thyroid forum..this would be the one.
http://thyroid.about.com/blthyroid.htm

The only book I ever read on thyroid disease was Solved: The Riddle of Illness by Stephen Langer. I thought it was very good, but that was almost twenty years ago!! I don't know if he's done revisions, etc, so some info could possibly be out of date.

http://www.amazon.com/Solved-Illness...e=UTF8&s=books

Cara

Thanks for the info., yes, I have gone to thyroid sites, they are very interesting, I'm finally going to see the endocrinologist that I originally wanted to see, but at the time she was booked, so they booked me with a new one that works with her. She was alright, but occupied too much with her personal life issues, so finally the one I wanted to see, that 3 docs referred me to, is available.
I had to be persistant and tell the receptionist I wanted follow up with her, I didn't care if the other doc was the first to see me, it was only due to other doc being booked when I needed to hear the results of my ultrasound.
I hope I'll get to have a doc that "listens" to me, not just the numbers on tests.
Thanks for the replies,
DE

Keep us posted on the results with this new doc. Let's hope she's all you want her to be!!
Hugs,

Hi there everyone,

Well in Nov, my endocrinologist started me on 75mcg of Synthroid, then January my second ultrasound revealed 2 new nodules, while one of the previous ones has shrunk while on the higher dose of Synthroid.

I saw her a couple of weeks to go over the latest ultrasound and bloodwork, my vitamin D and calcium levels were low so she reminded me to be sure to take my Caltrate (I keep forgetting) and also take Vitamin D supplement.
She also allowed me to start 5mcg of Cytomel along with my 75mcg Synthroid.
I hinted for the T3/T4 regimen, cause I have heard in cases like mine where most of the symptoms, mostly fatigue still lingers, so far it seems to be helping. Now to lose this damn weight, I gained 45 lbs in only a few years, and still seem to gain a couple every 2 weeks.
Maybe with fatigue fading, I'll have enough strength to go back to my daily exercise regime, helping to lose this damn weight.
Wish me luck as I wish all of you that have to deal with this stuff.
I found out the achiness in my right elbow/wrist/hand turned out to be "tennis elbow" the other achiness and constant low grade temp on and off is gone now. Yay!! I guess it's a deal that takes a little at a time to regain my physical life back, eh?
Anyone use Cytomel and Synthroid as a combo? If so, I'd be glad to hear how y'all do with that.
Thanks for listening to my lengthy post.
Take care now,
DE

Thanks for the update, DE. Nice to know things are starting to work out for you. If you run into a "magic pill" for the weight loss problem, be sure to post it! Mine creeps up a little at a time, no matter what I do. Like you, I think I can put a lot of it down to fatigue, and the inactivity it causes. I did lose a few pounds when I went on a gluten free diet after I discovered I'm gluten sensitive, but unfortunately, it has come back.
Hugs,

Dr. Stephen Langer was my thyroid doctor in Berkeley up until we moved five years ago. He's the only doctor who tested me for thyroid antibodies, after being hypothyroid for ten years with TSH levels that would swing from 0.5 to 19 (on the same dosage of synthetic thyroid).

After confirming I had Hashimoto's Thyroiditis, Dr. Langer put me on dessicated thyroid and THAT'S when I started getting better. It's been uphill ever since. Dessicated was the key for me.

I know I'm coming into this thread late... how are you doing now? You didn't say if your doctor is a thyroid specialist; many endocrinologists specialize in diabetes.

BTW, Dr. Arem is my sister's thyroid doctor in Houston.

She deals more in the thyroid area, but also diabetes. My mom's endocrinologist seems strictly just for diabetes, didn't even care to persue taking me on as a patient. My pdoc, said it's cause that endo is more into treating diabetes, when I remarked that maybe mom's endo didn't want to take me on cause my mom is his patient and he'd feel odd.
But now I realize I was referred to the right (I hope) endo for thyroid disorders, I see her in May and we'll work further, probably going for needle aspiration for the nodules, cause the med helped shrink one nodule, but last ultrasound (only2-3months after the first) showed I grew 2 more nodules, seems strange that they are growing so fast, makes me fear cancer.
My cousin had thyroid cancer, they removed the thyroid, and have him on permanent thyroid meds. and no cancer had been found to have spread.
A friend of our family's, started with thyroid cancer (wasn't treated when it should have been) which spread and caused breast cancer which then spread like wildfire . . . she died.
Many stories I keep hearing, make me more inclined to keep on top of this.
Grrrrrrrrrrrrrrr! to my former GP's that for years told me I felt so lousy cause I was depressed, and would write scripts for anti-depressants, bah!!!
Oh well I can't cry over spilled milk, but I'm still disappointed I never was taken seriously, and I could of probably been saved of years of feeling unwell.
Sorry, for my rant, and thanks for your reply.
I don't get here often, so this reply may have come late, thanks again for your reply.

DE

Lois-
It was carpal tunnel/tendonitis that finally led me to get my subclinical hypothyroidism diagnosed. I read somewhere that about 20% of people with carpal tunnel and tendonitis (RSIs) have underactive thyroid function. After 4 weeks on a very low dose of Synthroid, no more tendonitis.

All-
I am a 35 year old woman who is apparently at a turning point with my thyroid issues and the pivot point has something to do with a wheat allergy. The quick synopsis is here, longer version below. I was dx'ed with subclinical hypothyroidism 4 years ago and have been on Synthroid ever since. 5 weeks ago, I stopped eating wheat and all of my thyroid-esque symptoms improved...immediately and unequivocally. I lost the 5-8 lbs I have been carrying around ever since my thyroid pooped out, my digestion and elimination are great for the first time in my life (no constipation, etc.), my energy level and brain fx are fantastic, and I'm building muscle easily. The shift was so fast that I had to completely stop my Synthroid within the course of 5 weeks b/c I was becoming rapidly hyperthyroid. I am very hyperthyroid at the moment and realize it may take another 4 weeks for the Synthroid to get out of my system. I did some research on thyroid and celiacs/wheat and found that autoimmune hypothyroidism is linked to wheat issues, but I have never had the antibodies to indicate Hashimotos's disease. Has anyone ever heard of non-Hashimoto's hypothyroidism being linked to wheat? Anyone have any experience with this? Do you know of any resources? Once you cut out wheat, is hyperthyroidism the new issue or is this a transitional experience? All I can say is that as unfun as hypothyroidism was, the current state of hyperthyroidism is no cake walk either and it was actually easier to handle the hypothyroidism because I could prop it up with Synthroid...