Thyroid Getting Worse After Going gluten-free?

[ClevelandGuy]

I'm curious if it's possible/common for hypothyroidism to actually worsen for a period of time after going Gluten-Free. I'm on my 10th week gluten-free, and still feeling like crap. Although GI issues are better, the fatigue is way worse than when I began. I know it's common for thyroid issues to resolve after going gluten-free, but I'm wondering if it's possible for them to worsen in some cases. I haven't had my thyroid levels checked in several months, and I'm wondering if there's a possibility that my fatigue is worsening because of the thyroid. I will try to get full Celiac (to see if my TTg has declined at all) and Thyroid panels run on my next visit on the 20th.

Thanks

[Skylark]

I got the full Hashimoto's diagnosis three years after going gluten-free. This spring, going on 5 years gluten-free, my thyroid levels took another completely unexplained nosedive and I'm still trying to feel well again.

[K-Dawg]

Hey ClevelandGuy:

I also have thyroid issues, being graves disease and hashimoto's. No, I"m not totally clear on how they can both be present?! In any event, shortly after going gluten-free I did enter into a 'thyroid storm' ... but, really, I was due for one. I usually have a thyroid storm once every 10 - 14 months...followed by meds...followed by a 10 - 14 month remission and then the thyroid storm hits again.

I have now been gluten-free for over a year and I think my thyroid issues are just running their course.

I do want to say that, like you, I did have some significant fatigue when I first went gluten free...but I think my body was just so far gone...I was physically exhausted. And since I had a diagnosis, it's sort of like my physical self decided to take a break...as if my body knew it didn't need to fight anymore. Sort of like when you manage to stay healthy all year and as soon as you take a vacation, BAM - you get sick...cuz your body knows it has a chance to heal and it's not full of all that fight adrenaline needed to get through a hectic work cycle. Do I make sense?

The fatigue passed...my body healed ... and I have not been sick since going gluten-free. It's kinda amazing, really. So hang in there...cuz you are going to achieve a wellness that you've not had in a long while!!!

KDawg

I'm curious if it's possible/common for hypothyroidism to actually worsen for a period of time after going Gluten-Free. I'm on my 10th week gluten-free, and still feeling like crap. Although GI issues are better, the fatigue is way worse than when I began. I know it's common for thyroid issues to resolve after going gluten-free, but I'm wondering if it's possible for them to worsen in some cases. I haven't had my thyroid levels checked in several months, and I'm wondering if there's a possibility that my fatigue is worsening because of the thyroid. I will try to get full Celiac (to see if my TTg has declined at all) and Thyroid panels run on my next visit on the 20th.

Thanks

[ClevelandGuy]

I got the full Hashimoto's diagnosis three years after going gluten-free. This spring, going on 5 years gluten-free, my thyroid levels took another completely unexplained nosedive and I'm still trying to feel well again.

Hmm, now I really do wonder if my levels are low. It would explain a lot. I was actually expecting that they'd normalize, if anything. I wish we had simple home testing of thyroid levels, kinda like blood sugar levels. Thanks, Skylark.

[ClevelandGuy]

Hey ClevelandGuy:

I also have thyroid issues, being graves disease and hashimoto's. No, I"m not totally clear on how they can both be present?! In any event, shortly after going gluten-free I did enter into a 'thyroid storm' ... but, really, I was due for one. I usually have a thyroid storm once every 10 - 14 months...followed by meds...followed by a 10 - 14 month remission and then the thyroid storm hits again.

I do want to say that, like you, I did have some significant fatigue when I first went gluten free...but I think my body was just so far gone...I was physically exhausted.

Wow, I had no idea you could have both Graves and Hashimotos at the same time. Sounds like some kind of regulator is busted. If you don't mind my asking, how long did you have the fatigue when you first went gluten-free? I expected ups and downs, but this has been ridiculous- it's all downs. I'm afraid that I'm about to lose my job over this very soon. Thanks for your response, K-Dawg.

[georgie]

I noticed you had low Vit D and after initially feeling better with treatment - you then felt worse.

Have you ever considered and been tested for Hyperparathyroidism?

You may find these articles interesting..

Hyperparathyroidism unmasked by the treatment of hypothyroidism secondary to Hashimoto's thyroiditis.

Calandra DB, Shah K, Lawrence AM, Paloyan E.

Abstract

Primary hyperparathyroidism masked by untreated hypothyroidism was first noted by Kissin and Bakst in 1947; since then there has been only a single case reported. As a result, it has been thought to be a rare complex of parathyroid disease. During the past 17 years we observed 17 patients who developed primary hyperparathyroidism after their treatment for hypothyroidism (secondary to Hashimoto's thyroiditis) with thyroxine had been well underway. The patients were all women whose ages ranged between 16 and 76 years. The clinical and biochemical manifestations of hyperparathyroidism were noted 2 months to 30 years after thyroxine therapy. All patients underwent standard subtotal parathyroidectomy. Fourteen patients had a single parathyroid adenoma and three had multiglandular adenomatous hyperplasia. It is of interest that all 17 patients were found to have Hashimoto's thyroiditis, based on antimicrosomal antibody titers or histopathologic criteria. Thus we present a series of patients who developed primary hyperparathyroidism in a background of Hashimoto's thyroiditis and hypothyroidism treated with thyroxine. We are intrigued by the association of hyperparathyroidism and Hashimoto's chronic thyroiditis. From this experience it seems appropriate to evaluate parathyroid function in patients with hypothyroidism secondary to Hashimoto's thyroiditis before the initiation of treatment with thyroxine and at intervals thereafter.

PMID: 6548840 [PubMed - indexed for MEDLINE]

Vitamin D levels high.As the calcium level increases, the level of Vitamin D-25 decreases. The following graph shows this nicely. When we look at 1587 patients with a parathyroid tumor (we know it because we removed the tumor and gave the patient a picture of it), we see that those with higher calcium levels tend to have lower Vitamin D levels. As you will read below, this is because the body is trying to protect itself from the high calcium, and it is converting one form of Vitamin D (Vit-D-25) into another form (Vit-D-1-25). This serves to decrease the amount of calcium absorbed from our diet, to keep the calcium from getting even higher. Read that again... the body is protecting itself from the high calcium. It does this by decreasing the amount of Vitamin D in our body so we don't absorb as much calcium in our diet. As you can see from the graph below, the higher a patient's calcium goes, the lower the Vitamin D goes.

Open Original Shared Link

Symptoms of Hyperparathyroid

Symptoms of Parathyroid Disease

Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue.

Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.

Feel old. Don't have the interest in things that you used to.

Can't concentrate, or can't keep your concentration like in the past.

Depression.

Osteoporosis and Osteopenia.

Bones hurt; typically it's bones in the legs and arms but can be most bones.

Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.

Tired during the day and frequently feel like you want a nap.

Spouse claims you are more irritable and harder to get along with (cranky, b%$@#y).

Forget simple things that you used to remember very easily (worsening memory).

Gastric acid reflux; heartburn; GERD.

Decrease in sex drive.

Thinning hair (predominately in middle aged females on the front part of the scalp).

Kidney Stones.

High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).

Recurrent Headaches (usually patients under the age of 40).

Heart Palpitations (arrhythmias). Typically atrial arrhythmias.

Most people with hyperparathyroidism will have 4 - 6 of these symptoms. Some will have lots of them. A few people will say they don't have any... but after an operation they will often say otherwise. 95% of people with hyperparathyroidism will have 3 or more of these symptoms. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.

Open Original Shared Link

Age at diagnosis

Young people (teenagers, twenties, thirties) get hyperparathyroidism.People of every age get parathyroid disease! Everywhere you read about parathyroid disease (hyperparathyroidism) you will see that it is most common in patients in their 50s, 60s, and 70s. That is very true! However young people develop parathyroid tumors too. In fact, as more and more young people are getting their blood calcium checked, we are realizing that parathyroid problems are much more common in young people than we ever thought before. Hyperparathyroidism is more common in people over the age of 50--but it is not just a disease of the senior citizen!

Open Original Shared Link

[K-Dawg]

Hey ClevelandGuy:

Okay -- in November 2008, I felt very sick and discovered that my liver enzymes were elevated. Six months later I had lost 30 pounds, weighing only 90 pounds, and I had a diagnosis from my liver specialist: Celiac Disease (whatever that was - lol).

So, I immediately went gluten free AND I took time away from work. My contract was at an end anyway. I took 4 months off, and focused on getting better. And I tell you all this because I think it is significant for you to know that (a) I was pretty ill by the time my diagnosis came and ( B ) when I went gluten free, I took time off.

AND...EVEN though I was on a time-out with no work stress, with all the time in the world to sleep in, walk my dogs, go to the market, etc..I was EXHAUSTED!! I had never been so exhausted, ClevelandGuy. I went from bad to worse, before I got better. My time away from work was indefinite..I had told myself that I was going to take as much time as it took and it took longer than I thought. It was not until around the 3 month mark that I started to feel better...my energy levels were rising and I was feeling more optimistic about my health. And now I am happy to report that when I do go into a thyroid storm, it doesn't feel as bad as it used to (but the first one while gluten-free was really wretched). I would stay on top of your thyroid issues...you don't need that making you all wacky now.

So, unlike me, you are still trying to be super-human and you're exhausted. I was exhausted and I wasn't even working. I knew I needed to take the time off. I was lucky that I had that luxury. I'm not surprised that you are exhausted. Also, make sure you are eating a very good and healthy gluten free diet. I was a vegetarian for a decade prior to going gluten free. For the first month of gluten free living, I maintained my vegetarian diet, but with all my food allergies and lactose intollerence, I wasn't getting proper nutrition. I had to introduce animals into my diet. I now only eat meat 1 every 2 weeks or so. It was a tough choice, one I'm not entirely sure was the correct one, but I do think that adding meat aided my recovery.

Best of luck to you!!!!

KDawg

Wow, I had no idea you could have both Graves and Hashimotos at the same time. Sounds like some kind of regulator is busted. If you don't mind my asking, how long did you have the fatigue when you first went gluten-free? I expected ups and downs, but this has been ridiculous- it's all downs. I'm afraid that I'm about to lose my job over this very soon. Thanks for your response, K-Dawg.

[ClevelandGuy]

I noticed you had low Vit D and after initially feeling better with treatment - you then felt worse.

Have you ever considered and been tested for Hyperparathyroidism?

Symptoms of Hyperparathyroid

Symptoms of Parathyroid Disease

Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue.

Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.

Feel old. Don't have the interest in things that you used to.

Can't concentrate, or can't keep your concentration like in the past.

Depression.

Osteoporosis and Osteopenia.

Bones hurt; typically it's bones in the legs and arms but can be most bones.

Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.

Tired during the day and frequently feel like you want a nap.

Spouse claims you are more irritable and harder to get along with (cranky, b%$@#y).

Forget simple things that you used to remember very easily (worsening memory).

Gastric acid reflux; heartburn; GERD.

Decrease in sex drive.

Thinning hair (predominately in middle aged females on the front part of the scalp).

Kidney Stones.

High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).

Recurrent Headaches (usually patients under the age of 40).

Heart Palpitations (arrhythmias). Typically atrial arrhythmias.

georgie, that symptom list describes me to a T. I have almost all of them. I saw an endocrinologist a few months back (before the Celiac test), and all he came up with was "you probably have Hashimotos; your meds are fine". I'm adding "Hyperparathyroidism" to the list of questions to ask my new doc on the 20th.

Thanks for the info!

[ClevelandGuy]

Hey ClevelandGuy:

It was not until around the 3 month mark that I started to feel better...my energy levels were rising and I was feeling more optimistic about my health. And now I am happy to report that when I do go into a thyroid storm, it doesn't feel as bad as it used to (but the first one while gluten-free was really wretched). I would stay on top of your thyroid issues...you don't need that making you all wacky now.

K-Dawg, thanks for the encouragement. Kudos to you for having had the foresight to stick it out for 3 months... I wonder how many people simply give up before feeling better. I know I almost did. I'll be insisting on a complete thyroid panel when I see the doc on the 20th.

BTW, I actually felt significantly better today. I went back to drinking coffee again this morning after having given it up for almost a week. Maybe just a coincidence, but wow, so much better.

[georgie]

georgie, that symptom list describes me to a T. I have almost all of them. I saw an endocrinologist a few months back (before the Celiac test), and all he came up with was "you probably have Hashimotos; your meds are fine". I'm adding "Hyperparathyroidism" to the list of questions to ask my new doc on the 20th.

Thanks for the info!

Regular blood tests for calcium, iodized calcium and parathyroid ( PTH) show the picture. You may need weekly repeats. Do you think your Dr will be able to do that ? You can have hyperpt with only slightly high calciums... and if the PTH is normal but too 'high normal'... So make sure you get all 3 tests done at the SAME blood draw. If your calciums are slightly high - your PTH should be zzzing and near zero... That is the way Dr Norman can see it when so many other Drs cannot... He knows more about hyperpt than anyone.

And the levels fluctuate and so do the symptoms! This is what makes it so hard to dx for a Dr that is inexp.

The Parathyroid Disease Awareness Facebook page is good. Lots of info there.

[dilettantesteph]

I skimmed the replies and I don't think that anyone mentioned this. Are you getting your daily requirement of iodine? I switched to sea salt gluten free and stopped eating processed foods so I was no longer getting iodized salt. Sea salt doesn't contain enough iodine on its own. I felt much better when I started taking iodine supplements.

[ClevelandGuy]

I skimmed the replies and I don't think that anyone mentioned this. Are you getting your daily requirement of iodine? I switched to sea salt gluten free and stopped eating processed foods so I was no longer getting iodized salt. Sea salt doesn't contain enough iodine on its own. I felt much better when I started taking iodine supplements.

Hmm, our household salt is also sea salt. Are iodine levels typically checked during blood tests? I will ask for one when I see my doc on the 20th.

[ClevelandGuy]

Regular blood tests for calcium, iodized calcium and parathyroid ( PTH) show the picture.

I just checked a copy of my bloodwork from February, and it had Calcium at 10.5 mg/dl, which is the exact upper limit for "normal". I'll definitely bring it up with the doctor.

[georgie]

I just checked a copy of my bloodwork from February, and it had Calcium at 10.5 mg/dl, which is the exact upper limit for "normal". I'll definitely bring it up with the doctor.

Dr Norman says it is NEVER normal to have high calcium. And it will make you feel just plain ill. Iodized calcium presents more data... and the matching PTH level.

[Cypressmyst]

I have hypothyroid and went gluten free 2 1/2 months ago. A year ago I started eating healthy (If I can't spell it or say it it doesn't go into my body, and no refined sugar) but did not cut gluten out. I felt fantastic and 4 months ago went in for my annual thyroid bloodwork. They lowered it from .150 to .125 mg.

3 1/2 months later I could tell my thyroid was off, I was tired and wanted to eat all the time but couldn't stop thinking or talking. Went in and my meds got lowered again to .100 mg.

One month later and the symptoms are starting again, heart and head are racing etc. I have hope that I'll be able to heal my poor thyroid now that I've finally figured out that I've been poisoning myself my whole life.

I tell you this because it could be that you need your meds lowered rather than raised. This is a good thing! Good Luck and do let us know!