[Bobbi]

#1062875

The important thing to determine now is whether the high doses of methimazole made you hypothyroid, or something else. One way to do that is, of course, the lower dose of antithyroid med, which is what your doctor is suggesting. I don’t know if you have had antibody tests done, but some folks have the antibodies for both Hashimoto’s thyroiditis (which causes hypothyroidism) and Graves (hyperthyroidism). In that case, sometimes the diseases rotate back and forth in an unpredictable fashion, making life miserable.

The puffy face could be due to the hypothyroid levels of hormone, and would resolve if the lower dose of methimazole brings you back into more normal territory.

[Helenh]

#1062876

Hi Bobbi-
Thank you very much for your response. That’s very helpful information!

When would be the best time for me to get tested to see whether I also have antibodies for Hashimoto’s disease? I’m guessing that I should wait until after I take the lower dosage of Methimazole for a few weeks to see if it impacts my TSH levels?

Thank you!
Helen

[Helenh]

#1018135

Hello-
I am 28 and was diagnosed with Graves 6 months ago in July…I was hoping to get help from all the folks on this site to help me understand my latest results.

I do have TED and I just found out that within a month, my TSH levels have jumped from 0.04 to 32.5! My Free T4 within the last three months have gone from 2.01, 0.5, and most recently 0.25.

I just changed doctors because it seems like my previous one only was pushing more medication – my dosages of Methimazole has gone from 20mg/day, 30mg/day, 40mg/day, and most recently 20mg/day. My new doctor just told me that I should now take 5mg/day and I’ve seen a nutritionist who suggested I go on a diet free of gluten, wheat, dairy, and soy. I’ve been doing that for about 3 weeks with no change in my weight.

My eyes seem to be the same but the rest of my face is puffy! Please help me if you have had a similar experience. Currently my doctor as told me to just wait and see how I do on the smaller dosage of Methimazole and get re-tested in 4-6 weeks.

Many thanks,
Helen

[Kimberly]

#1062877

Hello and welcome to the boards! Dosing with Methimazole is actually part art, part science. Our initial dose is based on the severity of our hypERthyroidism. After a few weeks, most patients will see their thyroid hormone levels start to fall, and when this happens, the doctor will reduce the initial dose to try and keep the patient out of hypO territory. It can take some trial and error to find the “sweet spot” that will prevent you from being hypER…without making you hypO.

Unfortunately, some doctors will make dosing decisions based on TSH instead of Free T3 and Free T4. FT3 and FT4 represent the actual levels of thyroid hormone in our bodies, while TSH is a substance that lets the thyroid gland know whether it needs to produce *more* or *less* thyroid hormone. TSH can remain suppressed for months (or years) in many Graves’ patients. Some docs see a low TSH and don’t reduce the initial doseage quickly enough because they assume we are still hypER…when in reality the Free T3 and Free T4 might be in the normal range, or even on the hypO end.

TPOab are generally tested to check for Hashimoto’s Thyroiditis…*however* about 50% of patients with Graves’ will also test positive for these antibodies. So you might check with your doctor as to whether this would be a helpful test for you at this point.

We can’t speculate on whether you went hypo because of a high dose of Anti-Thyroid Drugs…or whether there is another underlying condition involved. However, it sounds like you are on the right track now with your new physician.

I actually went gluten/dairy/egg free for about 9 months after diagnosis, as I had a naturopath who believed that there was a connection between food sensitivities and autoimmune diseases. I found it to be a very high maintenance diet, and I don’t think it made a difference in the course of my Graves’.

However, I have heard success stories from other patients who chose to go gluten and dairy free. So my suggesions would be to (1) check with your doctor to make sure you aren’t missing out on any vital nutrients before cutting large food groups out of your diet and (2) monitor whether you are seeing any improvements in how you FEEL as well as what your labs say. Then you can make a decision going forward as to whether that particular food plan makes sense for you in the long term.

[Helenh]

#1062878

Hi Kimberly-
Thank you so much for this information! It really helps me to sort out all of the various pieces of information (sometimes conflicting) that’s been provided to me.

I truly appreciate it your great suggestions. I will make sure I work with my doctor to ensure I have as balanced of a diet as possible.

Thank you!
Helen

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