[safirary]

#1058893

I was diagnosed with GD end of Dec 2011 and started on methimazole early January. I was really hyperthyroid, unable to sleep, losing weight, itchy, irritable, etc. Was started on 20 mg a day of methimazole; after 2-3 weeks this was doubled to 40 mg daily and my values improved as did my symptoms. Mid Feb I was feeling blah, tired, very hungry and labs showed that my T4 had drifted into the low normal range; my methimazole was cut to 10 mg a day, then by late Feb cut again to 5 mg a day. I had labs today and my T4 is 0.98 (normal in our lab is 0.9-1.7), TSH has come up to 1.64. I am feeling more tired, crampy in the muscles, sleepy and my endo called me and after asking how I was feeling told me to just stop the methimazole and recheck labs in 2 weeks or sooner if I started feeling hyper again. I guess I am worried about whether I could get hyper really fast again (and this roller coaster is no fun!!), maybe be at risk for thyroid storm? I had a high TSI antibody test (4.0, normal is less than 0.5) in Jan–I can’t believe those antibodies are gone! He said because my TSH was rising that that was a good sign??? I am trying to train for a fun run and if I get hyper again, that won’t be happening…I’ve read about block and replace, he didn’t recommend that either…just wait and see if the hyper beast strikes again. I don’t like that idea since I had to be off work when I was really hyper and lost about 8 pounds during a very short period of time.

[Bobbi]

#1170729

It is not usual to fluctuate so rapidly from hyper to hypo type issues. I would recommend that you either nag your current endo, or get a second opinion. Or both. Some of us do have the antibodies for both hypo and hyper autoimmune diseases. And we move in and out. We are not, however, victims. There ARE things we can do to eliminate the fluctuations. But the doctor has to be willing to check for the condition

[safirary]

#1170730

Do you mean check for Hashimoto’s type antibodies?

[Kimberly]

#1170731

Hello – Some patients do end up getting diagnosed with both Graves’ Disease and Hashimoto’s thyroiditis, and end up with levels swinging between hyper and hypo.

A more common issue is that finding the correct dose of methimazole is a trial-and-error process, not a “one dose fits all” type of situation. Being on a dose that is too high for you can send levels into hypO territory.

The latest guidelines from the American Association of Endocrinologists and American Thyroid Association recommends antibody testing (TRAb, although TSI is also used) prior to withdrawing Anti-Thyroid Drugs, as hyperthyroidism *is* likely to recur if the meds are withdrawn while antibodies are still raging.

Traditional Block & Replace therapy involves using large doses of Anti-Thyroid Drugs to shut down thyroid production and taking replacement hormone to normalize thyroid hormone levels. However, this option is not commonly used in the U.S.. There was a study in Japan done where the results of B&R were highly successful in bringing on remission – but these results haven’t been replicated here in the U.S. Also, there is concern that the higher doses of meds may be correlated with a higher rate of side effects, such as liver and white blood cell issues. When U.S. doctors hear the term “block and replace”, they generally assume that you are talking about this particular therapy.

However, another option, which was mentioned by a presenter at our 2011 Boston conference, is that it can sometimes be easier to stabilize patients on Anti-Thyroid Drugs by giving the patient a consistent dose of ATDs, and then supplementing with thyroid hormone replacement – if needed – to make sure the patient doesn’t go hypO. You might discuss this option with your doctor if you are interested.

Hope this helps!

[safirary]

#1170732

Thanks for your comprehensive reply! After discussion with another MD, I am weaning down my methimazole to 2.5 mg every other day and recheck labs in a few weeks. My husband strongly feels like avoiding HYPERthyroidism problems is worth the chance of continued HYPO symptoms for a few weeks, and I guess I agree too…he had to live with me during the really rough patch.

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