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Going gluten-free Made Grave's Disease Worse?


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#16 Gemini

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Posted 05 December 2012 - 11:17 AM

Hi Gemini
I am sure gluten and soy both affect my bodies use of my meds. Never noticed a problem with other foods but I do have problems with low ferritin and this makes me hypery.
My thyroid gland swells if I take iodine or fish liver oils - I crash rapidly and Vitamin C tickles my thyroid (not swelling but tickling)!!! Would not take any of these. I seem to be ok eating fish and fruits high in vit C so I stick with these.

I always show a suppressed TSH and although I took T4 for years, I agree that natural thyroid hormone is much better and am very lucky to be able to get it now. I wish too that TSH wasn't used as a test.

I am very active and do loads of exercise - am a very driven person so tend to still be going when the rest have stopped - inclined to be perfectionist too - hopeless :ph34r: .


I am not sure if Graves affects iron levels but Hashi's does.....if you are not making enough thyroid hormone and it dips too low for more than a short period of time, you can pop anemic.
The instability of your thyroid may be causing the low ferritin.

I am the same with regards to exercise. I am constantly in motion and do not rest all that often. I feel better when I move. I used to be a nutty perfectionista but that has changed a bit. I am still a perfectionist with certain things (like work) but other areas I let that go as I aged. So....you are not hopeless. Mental state changes a bit when you get older. You begin to realize that being perfect is not really totally attainable so some things aren't as important. That might be your hyper state kicking in but I am low thyroid and I never stop....go figure! ;)
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#17 Luddie

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Posted 07 January 2013 - 08:06 PM

Hi Owlmuse,

I had graves dx when I was 30 not long after the birth of my son (which is a common), i was on carbamazole for a year and then my levels were normal. 3 years ago after suffering severe stress (husband had lung cancer) my graves started again and they tried to control with meds. I was told that because it had come back, it was likely to continue to be unstabalised and the safest way to control would be to nute. Last year i had RAI and wasnt allowed near my son for 3 weeks. It didnt work so in march this year i had a total thyroidectomy so now on levothyroxine. i have recently had positive blood tests for celiac (awaiting biopsy) .. Ive often wondered if i went gluten free before the operation how my graves would have reacted. But i was told that if i didnt have my thyroid nuted, it would eventually shut down completely...dont know how true that is!

Hi all,
Very interesting topic which I'm now really tuned into. I've been on celiac diet for several years now, in earnest for about 2. Take lots of vitamin/mineral supplements prescribed by my doc. Checks blood every 6 to 9 weeks to make sure all is okay. About 7 years ago, before I found I had celiac, I was dx with a huge goiter wrapped around my trachea. After checking the attending nodes it was decided there was no malignancy, but because it was positioned as it was they couldn't do the nuke. Had to have it surgically removed because if it had swelled at all after nuking it would have squeezed the trachea shut! All went well, including the repositioning of the parathyroids which control calcium levels in the body. I didn't lose the ability to talk or sing, and that made me very happy! So, I've been on levothyroxine for the past several years. Lately my TSH has been going up and up almost to 10 which panicked me (not my doc). He says all the other thyroid tests he's done look fine although he's tweaking the treatment with a tiny bit of T-3. He says not to worry about the TSH and I think that's what's being said by some of these postings, too. I'll be interested to read more of this topic in the coming months.
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#18 ButterflyChaser

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Posted 08 January 2013 - 02:54 AM

Hi all, I have been gluten-free since October 2012 and have been hyper since July - just got my tests back, and while my TSH has risen a bit (0.06, the highest it has ever been, it was 0.01 last October), and my FT3 is 21.37 (max should be 6) and my FT4 is 35.49 (max should be 15.50). :o Never been this high.

It's really weird, however, as I don't have as many symptoms as I used to have when I was less hyper. I sleep soundly, have less/no panic attacks, my hair isn't falling any more nor less, my heart rate is still under control. Now I fear meeting my endo.

Has anyone suggested/done surgical elimination of the thyroid instead of Tapazole/RAI?

And has anyone experienced dramatic edema/swelling while hyper? How did you fix that?

I have put on 20-25 lbs since getting hyPER and can't get them off no matter what. I used to be an athletic 14% body-fat female. I eat 99% unprocessed foods (I think the only packaged thing I eat is chocolate, really, and that's because I don't have the tools to make my own truffles! I bake my own anything, which I am consuming less and less), mostly lean protein and fresh veggies/fruit, no cereals, and exercise vigorously two hours per day - cardio and weight training. :blink: It's like something is "eating" my muscles (I am weak in spite of my training) and filling me with some kind of flab. I am very discouraged, and kind of scared.

The only new thing so far in my labs is that my cortisol is kaputt (almost non-existent) and that my albumines are also low. Has this happened to other hyper people here?
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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#19 VeggieGal

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Posted 08 January 2013 - 10:58 AM

Hi ButterflyChaser, I had Graves disease in 2002 and at first I lost about 3 stone with no effort. My levels then became normal after a couple of yrs so I came off meds and went to a normal weight again of about 10 stone. In 2010 the Graves came back but this time I put on about 3 stones! The gp said this was unusual but since then I've met many people who are overweight with graves. I had my thyroid surgically removed last yr (with complications but my para glands were ok).

I've not lost the weight yet but i don't get that awful anxious feeling anymore and the muscle weakness in my legs has improved .

Yes your FT3 and FT4 are very high. Has your Dr taken tests for RT3 ? From what I understand, if you are making too much FT3 your body can turn it into RT3 which can have an opposite effect ie weight gain. If you're in the UK you may struggle for a Dr to test you for it. Have a read :-
http://www.stoptheth...com/reverse-t3/

which will explain it much better than me.
I know its no fun being hyper...good luck on getting better ...you'll get there :)
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#20 ButterflyChaser

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Posted 10 January 2013 - 01:08 AM

Thank you VeggieGal, I'll look into RT3 (I am now in Italy for a few weeks, but I wish I lived in Britain LOL!) . I saw a couple of my docs yesterday, who think that my weight gain is probably edema due to a loss of proteins, caused by my chronic D (been pretty bad for a couple of years, getting increasingly worse, made a semi-invalid this summer, and getting better since going gluten-free) and/or by some kind of reaction to some foods, so they want me tested for that.

I am very frustrated because I did lots of allergy tests in 2011 and nothing came up, but I do react to stuff, and it's not in my head <_< because several people have noticed me swelling rapidly or getting an instant itchy rash (it's usually after exposure to wheat).

They slightly changed my thyroid therapy, too, even if I haven't really had symptoms for several months now - no more that horrid undefined anxiety, and when my physiatrist tested me for muscle strength he found it improved since my former bout of hyperthyroidism. Also, my amenorrhea finally ceased after 18 months, so, funnily enough, body is getting better even if thyroid labs are getting worse.

I have a similar story to yours: in 2011 I went down to 5 stones or less, and therefore lost all my muscle mass (I had always been 7 stones, so there wasn't exactly a lot of fat to begin with). Now I have 2 extra stones on my body and my heart and joints are suffering terribly from it: I am uber-short and small-framed, and my body just isn't built to carry that much baggage, so my movements are impaired.
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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.



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