Thyroid Meds Had To Be Lowered Since Going gluten-free

[Tigercat17]

Hi everyone!

In the last 18 months of being gluten free I had to lower my thyroid meds to almost half the amount I was taking before being gluten free. Can anyone else relate to this? I keep getting hyperthyroid. I'm actually hyperthyroid right now - joy -joy!

I've been on thyroid medicine for about eleven years before being diagnosed with celiac disease. I had Hasimoto disease then. Then I had thyroid cancer almost three years ago, had my thyroid removed, received radiation and my endo doctor keeps my thyroid hormones slightly repressed (slightly hyperthyriod) and is keeping my TSH levels at .2. So it seems as my intestines been healing, I'm absorbing more thyroid meds, but then I get hyperthyroid and then they have to lower my dose again. It's been a constant cycle in the last 18 months, but I do understand they are doing this to protect me for getting more thyroid cancer. I think they had to lower my Levoxyl about 10 times since they didn't want to go too low because of the thyroid cancer. My dose has been lowered very gradual.

When I first started the gluten free diet I was taking 137mcg daily and one & a half a pill on day 7. Now they just lowered me again and I'm all they way down to 88mcg! It's unbelievable! Just proves how much nutrients I wasn't absorbing and explains why I was so sick when I was diagnosed. I've been getting my bloodwork done about every eight weeks. I'm hoping that this is the lowest it gets and my intestines are completely heal by now.

I wondering if there was anyone else that was on thyroid hormones before going gluten free and then had to get their thyroid hormone dosage lowered because of going gluten free.

It also seems that I'm very sensitive and I can't eat a lot of supposedly processed "gluten free" foods. I'm wondering if it's because of the hyperthyroidism? I did have a gastric emptying study done in Dec. 2009 and it showed that my stomach was emptying way too fast. The radiologists said it was the fastest they ever seen. The GI doctor told me that the hyperthyroidism can cause this, so I didn't get retested.

Can anyone relate to any of this?

Thanks everyone!

[Jestgar]

I wondering if there was anyone else that was on thyroid hormones before going gluten free and then had to get their thyroid hormone dosage lowered because of going gluten free.

Yep. Mine dropped by almost half.

[jerseyangel]

I was never on meds, but before I was diagnosed I was slightly in the low range on my thyroid numbers. They normalized after a few months gluten-free.

[IrishHeart]

I was on meds for slightly hypo, but I felt "racy" on them and complained...sure enough, I went hyper...then, the thyroid antibodies were so low, the doctor said he did not know why I was on them in the first place. (me neither)

I'm still waiting to see what they say next month

[Tigercat17]

Yep. Mine dropped by almost half.

Wow - Thanks so much for sharing! I do feel like I'm going crazy sometimes. My doctors had no idea that my dosage would need to be lowered as much as it had to in the last 18 months. At least there are people who understand what I'm going through. I really wish they didn't have to keep my levels so exact. I know it's for my own good, but being hyper every so often is just a horrible feeling. As soon I start to feel like myself again, a month later I start feeling hyper again. I think I lost five pounds again without even trying. And boy, do I miss a good night's sleep... sigh....

[Tigercat17]

I was never on meds, but before I was diagnosed I was slightly in the low range on my thyroid numbers. They normalized after a few months gluten-free.

I'm so happy that you didn't need thyroid meds, Patti! Sounds like they caught the celiac right before you started having problems with your thyroid! It's amazing what a gluten free diet can do!

[Tigercat17]

I was on meds for slightly hypo, but I felt "racy" on them and complained...sure enough, I went hyper...then, the thyroid antibodies were so low, the doctor said he did not know why I was on them in the first place. (me neither)

I'm still waiting to see what they say next month

Oh believe me, I know all about that "racy" feeling. Keep us posted about your next appointment! I know doctors are clueless. Sometimes I feel like I'm the one educating my endo doctor about celiac disease.

Hopefully you won't need the meds at all!

[IrishHeart]

Wow - Thanks so much for sharing! I do feel like I'm going crazy sometimes. My doctors had no idea that my dosage would need to be lowered as much as it had to in the last 18 months. At least there are people who understand what I'm going through. I really wish they didn't have to keep my levels so exact. I know it's for my own good, but being hyper every so often is just a horrible feeling. As soon I start to feel like myself again, a month later I start feeling hyper again. I think I lost five pounds again without even trying. And boy, do I miss a good night's sleep... sigh....

I think I was subclinical hypo all my life...always had thin hair,etc...as the celiac "triggered" in 2008, my numbers bounced around and I think, if I hadn't been so exhausted, he never would have put me on meds at all. Celiac wasn't a thought back then. If I had been DXED properly years ago, I am sure the thyroid would not have been involved at all.

It's tricky, but I know you will make sure your doc stays on top of it so you don't have uncomfortable symptoms, Lisa. I realize you have special circumstances, given your surgery. My cousin also had hers removed and they eventually came to the right dosage. I hope it levels off asap so you can rest.

For me, the "hyper" symptoms were worse, I thought. TSH was .8 and I was way too racy inside, like I was speeding and anxious!UGH! the hypo ones TSH was 5.3 and I was sluggy, fat and cold...

Right now, I am at 2.6 and hopefully, that will hold. I am only gluten-free a few months, so I am hopeful.

Best luck. Let us know how you make out.