Going gluten-free Made Grave's Disease Worse?

[Owlmuse]

Hi!

I'm been confirmed Celiac and gluten-free now for almost 7 months now. I also have had Grave's Disease (autoimmune hyERthyroid) for 8 years and have been on meds ever since. All of a sudden 3 months ago I started to feel just really rotten and 6 weeks ago found out my thyroid had become very over active again despite being on meds (the same dose I've had for years). I thought I was doing better but this week I went to the doctor again and my heart rate was still high which most likely indicates my thyroid is still high. I'm afraid they are going to want to nuke my thyroid if it doesn't resolve soon.

Has anyone else had Grave's complications AFTER going gluten free? I'm trying to find out if this is something that will just act up a little and then return to (my) normal or is it just going to get worse until extreme action is taken. Thank you so much in advance for responding!!!

[TeknoLen]

Sorry to hear you are having a flare-up. Graves Disease sucks. Unfortunately, I cannot add much insight. My thyroid meds have been keeping me mostly steady so I have not noticed any differences due to diet changes. good luck!

[cavernio]

I have definitely read that going gluten free can help hypothyroidism, I think because gliadin is supposed to look like thyroid cells or something (how can gluten seemingly resemble EVERYTHING?). In any case, regardless, if gluten itself can make hypothyroidism worse or even cause it, it makes sense that eating gluten might have helped hyperthyroidism. I don't actually know the etiology of Graves disease at all though.

[Owlmuse]

So my fear has been realized! My thyroid function as continued to get worse and I found out today that I'II have to have radioactive iodine and nuke my thyroid : (

Just wanted to post my question again and expand it a little. Has anyone one had an autoimmune disorder that after going gluten free changed? Got better? got worse? I keep asking doctors and no body, not endocrine doctors not celiac experts, seem to have an answer for me as to why this is happening now. I keep hoping my thyroid will go back to my normal. Heck I thought after going gluten free I'd be able to go down on my meds. (weirdly it seemed to help some of my other food allergies calm down. I'm eating apples for the first time in 10 years).

Anyways please post any insights! I want to make sure I'm doing the right thing (this whole deal is stressful enough). Thanks!!

[Findin my way]

Owlmuse, I don't know when they want to treat your thyroid, but if you have a little time you could try l-carnitine. It's an amino acid and been shown to help with hyperthyroidism. Open Original Shared Link

Good luck. I hope the docs can figure out something less drastic for you.

[Gemini]

Hi!

I'm been confirmed Celiac and gluten-free now for almost 7 months now. I also have had Grave's Disease (autoimmune hyERthyroid) for 8 years and have been on meds ever since. All of a sudden 3 months ago I started to feel just really rotten and 6 weeks ago found out my thyroid had become very over active again despite being on meds (the same dose I've had for years). I thought I was doing better but this week I went to the doctor again and my heart rate was still high which most likely indicates my thyroid is still high. I'm afraid they are going to want to nuke my thyroid if it doesn't resolve soon.

Has anyone else had Grave's complications AFTER going gluten free? I'm trying to find out if this is something that will just act up a little and then return to (my) normal or is it just going to get worse until extreme action is taken. Thank you so much in advance for responding!!!

Can you give me a little more information? If you have Graves, what meds do you take to control it? I was under the assumption that they nuke your thyroid to knock it down and then give you thyroid replacement therapy to fine tune your numbers.

I ask because I have Celiac and Hashi's thyroid disease. I am under active but with Hashi's you can swing between hyper and hypo. About 3 years into the gluten-free diet, I must have really started absorbing again because I went seriously hyperthyroid...really bad. Didn't sleep for almost a week. It turns out that the dose I was taking was now too high because I was absorbing meds better. I figured this out and went to the doctor, who confirmed that this happens often with Celiacs who take replacement hormone...or any meds for that matter.

If you are on hormone replacement or some other kind of med that controls your thyroid, you may just be absorbing better.....time to lower your dose!

[Owlmuse]

I'm on Tapazole which is a thyroid and immune supressant. Been on it with very little dose deviation for 8 years. I expected to have to go down on my dose after going gluten free and each doctor I tell I am having thyroid problems assumes I'm too hypo from too much meds now. Not the case. I'm too hyper and just went up to the max dose of tapazole. I've had a large range of symptoms because of this culminating and really not functioning in my day to day life well.

And yes a lot of people with Hyperthyroid do get their thyroid nuked right away. Because I was/am so young and was tolerating and was stable on tapozole before, my doctor continued me on the drug (it's actually the common practice in Europe, while nuking is the common practice here). Now since it seems my thyroid won't get controlled (I mean I just went on the max dose so I won't know for a while if it works) I'm getting pushed by my endocrinologist (whose opinion I do trust), my primary care dr (whose opinion I don't trust) and my mom (whose opinion I rely on too much). I wanted to post as a last ditch effort to see if anyone else has experienced this and what happened. (thanks to those who already posted!)

[Gemini]

I'm on Tapazole which is a thyroid and immune supressant. Been on it with very little dose deviation for 8 years. I expected to have to go down on my dose after going gluten free and each doctor I tell I am having thyroid problems assumes I'm too hypo from too much meds now. Not the case. I'm too hyper and just went up to the max dose of tapazole. I've had a large range of symptoms because of this culminating and really not functioning in my day to day life well.

And yes a lot of people with Hyperthyroid do get their thyroid nuked right away. Because I was/am so young and was tolerating and was stable on tapozole before, my doctor continued me on the drug (it's actually the common practice in Europe, while nuking is the common practice here). Now since it seems my thyroid won't get controlled (I mean I just went on the max dose so I won't know for a while if it works) I'm getting pushed by my endocrinologist (whose opinion I do trust), my primary care dr (whose opinion I don't trust) and my mom (whose opinion I rely on too much). I wanted to post as a last ditch effort to see if anyone else has experienced this and what happened. (thanks to those who already posted!)

Ok...I understand what you mean. I do not know that much about Graves treatment as I have the opposite problem so thank you for the little education!

That is strange because the med is an immune suppressant so your thyroid should be behaving. The gluten-free diet should improve absorption...maybe you haven't started to absorb better yet as it can take a little while for that to happen and so, short term, the thyroid is getting worse? It wouldn't make sense but something has changed since you started the gluten-free diet.

There is definitely a huge difference between hypo and hyper and you can't mistake that one! I do know that nuking your thyroid might be needed and it's not such a bad thing. I have friends who have had it done and they are doing fine, with no side effects. Kind of spooky treatment but is it better to take an immunosuppressant for life? You have to weigh the pro's and con's. I think they nuke more here as it's easier to control your thyroid afterwards. They can supplement with hormone replacement if they knock it down too low.

I hope they can find a reason for this or I hope it calms down for you and further treatment won't be necessary. Good luck...I am sorry I couldn't be of much help. Thyroid problems totally suck....especially hyper-thyroid. Hope you feel better soon!

[Owlmuse]

Ok...I understand what you mean. I do not know that much about Graves treatment as I have the opposite problem so thank you for the little education!

That is strange because the med is an immune suppressant so your thyroid should be behaving. The gluten-free diet should improve absorption...maybe you haven't started to absorb better yet as it can take a little while for that to happen and so, short term, the thyroid is getting worse? It wouldn't make sense but something has changed since you started the gluten-free diet.

There is definitely a huge difference between hypo and hyper and you can't mistake that one! I do know that nuking your thyroid might be needed and it's not such a bad thing. I have friends who have had it done and they are doing fine, with no side effects. Kind of spooky treatment but is it better to take an immunosuppressant for life? You have to weigh the pro's and con's. I think they nuke more here as it's easier to control your thyroid afterwards. They can supplement with hormone replacement if they knock it down too low.

I hope they can find a reason for this or I hope it calms down for you and further treatment won't be necessary. Good luck...I am sorry I couldn't be of much help. Thyroid problems totally suck....especially hyper-thyroid. Hope you feel better soon!

Thanks Gemini! That was a really nice response. I dont know anyone who has had their thyroid nuked (except a friend of my mom's daughter but she had cancer and had her thyroid removed first!) so it was really nice to hear that real individuals were fine after. And you are right - spooky is totally the word for the treatment. I keep picturing myself glowing when the lights are off like on cartoons. I know that doesn't happen but it's still an image in my head.

[GFinDC]

Thanks Gemini! That was a really nice response. I dont know anyone who has had their thyroid nuked (except a friend of my mom's daughter but she had cancer and had her thyroid removed first!) so it was really nice to hear that real individuals were fine after. And you are right - spooky is totally the word for the treatment. I keep picturing myself glowing when the lights are off like on cartoons. I know that doesn't happen but it's still an image in my head.

I haven't had hyper thyroid myself, but my mother had Graves and had her thyroid nuked. She did fine with hormone replacement afterwards. Have you had an ultrasound lately to see if anyting has changed in your thyroid? You might have an active nodule that is cranking out excess hormone.

Thyroid nodules are very commmon, many people have them. They usually aren't a problem. But it is good to know if you have them and if they are staying the same or growing. The doctors can often do a FNA (fine needle aspiration) biopsy to test them. They just stick a really fine needle in the thyroid to take a very small amount of tissue for examination. Generally people don't need anesthsia even, as the needle is vey fine and the area is not real sensitive. It just feels like a little pressure on the neck.

They do say people with Hashimoto's can swing back and forth between hypo and hyper symptoms.

I have a thyroid cyst. My endocrinologist didn't do surgery tho. He drained the cyst and then injected it with grain alcohol to kill some of the cells. It was an out patient procedure done in his office. It worked pretty well.

My endo reccommended ultrsaound vs MRI as it is cheaper and gives decent results quickly, with little chance of damage to the thyroid. Vs. MRI with contrast that is.

[sunsetsunrise]

So my fear has been realized! My thyroid function as continued to get worse and I found out today that I'II have to have radioactive iodine and nuke my thyroid : (

Just wanted to post my question again and expand it a little. Has anyone one had an autoimmune disorder that after going gluten free changed? Got better? got worse? I keep asking doctors and no body, not endocrine doctors not celiac experts, seem to have an answer for me as to why this is happening now. I keep hoping my thyroid will go back to my normal. Heck I thought after going gluten free I'd be able to go down on my meds. (weirdly it seemed to help some of my other food allergies calm down. I'm eating apples for the first time in 10 years).

Anyways please post any insights! I want to make sure I'm doing the right thing (this whole deal is stressful enough). Thanks!!

I became hypothyroid after RAI treatment for nonresponsive (propylthiouracil) treatment for Graves disease about thirty years ago. I have had Synthroid replacement since with more or less the same dosage through the years. About one month after starting the gluten-free diet after confirmatory biopsy, my free T4 level escalated to over 40. I subsequently lost excess weight and had my thyroid hormone replacement dose reduced after many many years. Now two years later, my TSH level has finally normalized (0.05 at lowest) and I am

within range for thyroid parameters.

Long story short. Changing my diet affected my thyroid hormones and it took months/years to stabilize. I can't speak to your Graves symptoms becoming worse after gluten-free diet, but I can say that my removing gluten definitely had an impact on my thyroid hormones, and my symptoms. I've found that reducing stress, listening to my body and those that I trust, have been beneficial to my health. I truly hope you find relief. Be well.

[Lady Eowyn]

Not sure that this will help your situation but a few thoughts anyway.

I have hashimoto's (since teens) but am certain my thyroid responds to what I eat.

I get a thing that I call 'hyper while hypo'.

I take my thyroid meds sublingually (sp?) so must assume it is not an absorbtion problem having an effect but I wonder if gluten (and to my mind soya) somehow blocks the T4/T3 meds from getting through and leaves them swilling round my bloodstream causing hypery symptoms.

I get the same thing from low ferritin causing non-use of the meds leaving them in the bloodstream rather than being used by cells.

My TSH is always low (upsets my doc) but my T4 and T3 are low/normal too - no idea what this means.

I spent a year (about 6 years ago) very anemic (another story!) and was unable to even take a pinch of T4 without near collapse due to hyper.

Did wonder if gluten can cause an immediate drop in iron - it does make me go white and ill looking.

As such, I can imagine an effect on Graves.

Sorry this isn't any help really other than to confirm an effect.

Hope you can get sorted and feel better.

[Gemini]

I have never noticed food, other than gluten, affecting my Hashi's and am not sure how much it really matters. Most goitrogenic veggies are only so when eaten raw....steaming them makes them more user friendly, without the unwanted affects on the thyroid. I have no issues with soy so I do not go out of my way to exclude that from my diet. I do not think it a good idea to exclude many veggies from the diet as they provide the fiber that Celiacs need. It's a better way to get fiber than grains.

My experience with the gluten-free diet was that around the 3 year mark, when I must have really started to absorb again, I went seriously hyper-thyroid when my dose became too large. That had never happened but I was not absorbing anything at time of diagnosis, including my thyroid meds. It takes a long time to re-adjust the dosage to correct levels but that may be because absorprion continues to improve over time. I do much, much better adding T3. You cannot fix a serious thyroid problem just taking T4.

Stress plays a huge part in thyroid function. I have had a particularly stressful year, with 2 moves, and my T4 has been on the lower end of normal, while my T3 has been in the wonderful range. When I am calm, things are better. Exercise has helped tremendously and if you are not currently enrolled in a good exercise regimen, that is essential to good thyroid function and should be considered.

Whatever path you choose to get better, balancing the thyroid can be tricky and take a long time because many other things affect thyroid function. Adrenal function, gluten...it can be overwhelming at times. For me, what works best is to suppress my TSH and throw that number out the window and go by T3 and T4 only. That way of treatment helped to bring my thyroid antibodies down from 1200 to normal range, along with the gluten-free diet. Yet most doctors just freak out when they see my suppressed TSH. I find that searching for and finding a good thyroid physician who thinks outside the box more stressful than thyroid disease itself.

[Lady Eowyn]

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 .

[VeggieGal]

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!

[Gemini]

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 .

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!

[Luddie]

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.

[ButterflyChaser]

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). 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. 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?

[VeggieGal]

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 :-

Open Original Shared Link

which will explain it much better than me.

I know its no fun being hyper...good luck on getting better ...you'll get there

[ButterflyChaser]

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.