[Bene37]

#1058646

I’ve been told by my endocrinologist that I have both TMG and Grave’s. Since I’ve been diagnosed last October, I’ve had 2 biopsies. Both were benign, but I have a lot of nodules. My endo says more than he could check in a whole day. I also have a holistic MD. My holistic MD who of course dislikes permanent treatments has now been advising that I get surgery or RAI. She says since I have both TMG and Graves that the chances of me going through remission is slim. Also, my husband and I would like to start a family in the near future since we’ve already had trouble conceiving in the past and I’m getting older. My MD also said that she has Graves disease and tried using PTU and it simply didn’t work for her. She chose RAI insetad.

I’m on 5 mg of methimazole now and wanted to stay on ATD while I try to conceive. She recommends that I switch to PTU now to see if it works for me before I try getting pregnant. But my endo doesn’t want me to until I’m pregnant because he’s worried about the effects PTU has on the liver.

I know this is a complicated question, but does anyone have any experience with having TMG and Graves? I don’t want to do surgery or RAI unless it’s necessary. Right now, the ATD’s are working. I’m not having trouble swallowing or anything. I feel almost completely normal (just have trouble sleeping at night probably from all the stress of deciding). I’m in the normal range finally after almost a year of being on methimazole. I still want to try for remission, but my holistic doctor thinks that’s going to take forever. I think it might take awhile if I also do surgery or RAI too. Any thoughts?

[Kimberly]

#1169166

Hello – I’m not personally dealing with TMG, but here is the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists on treatment options:

"We suggest that patients with overtly TMNG or TA be treated with either 131I therapy or thyroidectomy. On
occasion, long-term, low-dose treatment with methimazole may be appropriate."

The guidance recommends against using RAI for TMG if you are planning a pregnancy within 4-6 months.

As for the PTU vs. methimazole question, that is a decision where you and your doctor will need to weigh the risks and benefits. Severe liver complications in general are very rare…but methimazole does have a better safety track record versus PTU. The current recommendation is to use PTU during the first trimester of pregnancy, and then switch back to methimazole.

Regardless of which treatment option you choose, the really critical piece is to make sure that your levels are normal and stable before trying to conceive.

[Bene37]

#1169167

Thanks Kimberly!

I have heard that eventually if you have Grave’s disease your immune system completely attacks your thyroid and you become hypo. Is that true? I’m having a hard time justifying getting surgery if it’s going to end up happening anyway. I wonder what "overtly" means too. I have a lot of nodules, but it’s not interfering with my life.

[Kimberly]

#1169168

Hello – It’s pretty common to hear the term “thyroid burnout” thrown around in relation to Graves’ disease. However, at the 2009 conference, one doc commented that he believes this is a myth. While some patients do eventually see a reduction in thyroid function, he stated that our antibodies – which originally acted to *stimulate* thyroid production – may eventually start to act in a *blocking* capacity. But it’s not well understood whether these are actually different antibodies…or if they are the same antibodies, but they start behaving in a different way. (Perhaps by binding to the TSH receptors on our thyroid gland in a way that *prevents* thyroid hormone from being released).

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