Hi, everyone. I'm not sure what to do. I have had Graves disease on and off for 17 years. I have sent it into remission many times with thyroid suppressants (PTU and methimazole). I had a relapse four years ago, a few months before my first noticeable MG symptoms appeared. I think I also had another relapse in the past three years, treated again with methimazole for a couple of months. Neither the hyperthyroidism nor the methimazole seemed to affect my MG symptoms, though I wonder if the methimazole I took in the spring of 2009 for several months caused, or unmasked, the MG symptoms that first appeared in the fall.

Well, I think I'm having another Graves relapse. But I've since read that methimazole can have an immunomodulatory effect that worsens MG or causes an MG crisis. My endo says, "Well, let's do the radiation then." But I really, really don't want to radiate my thyroid, for two reasons. First, my Graves relapses have been progressively fewer and further between and milder over the past 15 years. My endo and I had hoped that the last relapse would be the end of it. If I'm this close to a lasting remission, it seems nuts to radiate now. Second, I am afraid that if I radiate, it will take months before my thyroid is finished dying (with spurts of thyroid hormone released as it dies) and months more before I get the dose of synthroid right. In other words, I'm afraid that the radiation treatment will cause me months of fluctuating hyper and hypo symptoms. I will be anxious, a bit crazy, exhausted, insomniac, and depressed. I don't feel like I can face those symptoms, on top of the MG.

I looked up the abstracts of methimazole in MG studies, and it seems really sketchy to me. I mean, it was like one case study of a person, plus one cat. On the other hand, it's long been suspected that treating Graves makes MG worse, but no one knows why, for sure. On the other hand, I've also read that untreated hyperthyroidism makes MG worse. Worse if you treat it, worse if you don't.

So, I'm confused and discouraged. Any thoughts? Thanks.

Abby

And...what sort of sense does it make that my immune system is attacking my thyroid now, when I've been on Imuran for almost two years, and the dose I'm currently taking is higher than the recommended dose for my weight? I'm also still the person in the family who never catches whatever's going around.

Abby

If it is possible, maybe get a second opinion: endo wise. Also talk to your neurologist or whoever handles your MG. I would do both if it were me :/

I agree with you on the radiation, I wouldn't want that, it sounds like it'll make your problems 5x worse when it may actually be on it's last leg out.

Don't get too discouraged, at least not yet. Hopefully there is an answer in there no one has pointed out yet. *hugs*

My situation is simmilar to yours, My thyroid was Hyper and the Methimezole was what brought out my MG, as soon as I started taking it things went from bad to worse fast. I did the radiation and a year later I'm just stabilized but in the end it was worth it for me!

But at that time my MG was so bad that I was willing to do anything to get my life back, I wasn't thinking long term then.

Abby, I'm no expert on this, so I agree that seeking out a 2nd opinion from another endo might be a good idea.

Your immune system is already suppressed. If you add radiation to that, you're at an increased risk for cancer.

I think it's important to not assume it's your thyroid that is the issue. Can your primary doctor do an overall evaluation of your health to make sure something else is not making you weaker? Perhaps a check of your adrenal function?

It's really a conundrum. Is it enough to choose the lesser evil or can you stick with the status quo?

You know how one change in the hormone system can affect another? Could it be suppression of your female hormones or others that is making your thyroid worse? The endocrine system is altered by immunosuppression too.

I hope you can figure all of this out. It must be very hard to face this again. I'm really sorry you have to.


Annie

Thanks, Annie. As always, you're a fount of good ideas.

I am leary of the radiation. I also know that killing the thyroid with radiation puts the eyes at risk: as the thyroid dies, it releases all the stored-up antibodies, which tend to collect behind the eyes, causing double vision. Sounds like a risk an MGer shouldn't take, doesn't it! Frankly, I'm trying to think of justifications for not getting the radiation, because I can't face a year of thyroid unsettled-ness! I could have a thyroidectomy and avoid the radiation, but general anesthesia is also something I should avoid if I can help it.

The reason I think I'm going hyper is that I've had a very familiar first sign: twitches of my right wrist, and a mild tremor (and no, I'm not on Mestinon). I actually have the pill-rolling tremor associated with Parkinson's, but with me, it's always been associated with hyperthyroidism. Boy oh boy, is this familiar. In the past, when I have had this symptom, my thyroid labs have always confirmed that I'm going hyper. My MG is actually pretty stable.

Female hormones, oi oi oi. Those sure do throw my MG around. I'm not on any hormones, no birth control or supplements or anything like that. I'm 46 and show no signs of menopause, though who knows. Women in my family go very, very late.

Thanks for your ideas, and thanks for discussing it with me. I think these things through much more carefully when I'm trying to explain them. For now, I think I'll wait a bit and see what happens.

Abby

My hormones through mine around pretty bad also Whenever I am close to my period (sorry for the TMI), like the week before, is when my MG symptoms kinda start (mostly extra tired and weakness in the legs, but sometimes my speech). What a pain lol.

Yes, me too. I never had PMS, but my myasthenia symptoms get worse on a typical PMS-schedule. This is evidently very common with myasthenia.

Abby