[kaicee118]

#1072578

Hello – other folks can probably give you more information than I can, but Graves does recur – it happened to me, although I was only in remission for about 12-18 months. Same as you – I started having symptoms that were all too familiar, went and had a blood test, and my TSH and T4 were up to their old tricks…second time was worse than the first, so you should go and get a blood test…best of luck to you.

Karen

[Ski]

#1072579

Yep, remission is, by definition, temporary. Get those levels tested. If all it means is you go back on the med, you’ll be back to health quickly.

[mamabear]

#1072580

GLadney, wow 4 years in remission without meds!!that is awesome to hear.
Yes get to dr. soon and check levels and if they come back normal then check it again soon after that just to be on the safe side. If you are out of range hopefully meds will bring you back into remission soon.

[enough3]

#1072581

I read your post and I am curious as to the dose of PTU that you took for 10yrs. Did it ever change for you? Or, did you find that right amount before your remission? When you went into remission on PTU, did you go hypo?

Sorry for all the questions, just curious?
Thanks~

[gladney5]

#1019570

I am 44 yrs. old and was diagnosed with Graves when I was 30 and took PTU for 10 years then when I turned 40 the doctors said I was in remission. I seem to be getting a lot of the symptons back and I was wondering if anyone knew if Graves ever comes out of remission or it could possibly be something else. Anyway, if anyone knows anything about this I would appreciate any feedback. Thanks

[lin]

#1072582

Yes, I’d like also to know abut your experience on PTU for 10 years. I am trying to get my dr. to put me on long-term meds for my Graves, but he insists I take RAI. He thinks the risk of bone marrow suppression on ATDs is too great, but I’ve yet to hear of someone who has had that problem.

[gladney5]

#1072583

Sorry took so long to reply. I went and had blood tests and they came back normal but I’m still experiencing the really bad leg aches and all the other symptoms. I’m not sure if I need to go back to an endocronologist or what. My experience with PTU was okay (it has the worst after taste in the world!). It only took about 3 to 4 weeks for the symptoms to go away but about 3 mos. for my TSH levels to come back to normal. My doctor was saying the other day that I may never have had Graves but some other autoimmune disease! Great! Now what! I’m almost wondering if that could be true since I have been in remission for 4 years which is pretty unusual from everything I’ve read and heard. I think I need to do a lot more research on my own. I hope I answered everything that was asked. I’ll keep you posted Thanks so much for the replies to my questions!

[DianneW]

#1072584

Gladney5,

It’s not at all unusual for a person to be in remission for 4 years. I know of quite a few people who have been in remission way longer than that. About 20-30% of patients who have a remission will never have a return of hyperthyroidism.

I was reading some information in the Thyroid Disease Manager, which is an online textbook geared toward doctors. I ran across a paragraph that said autopsies had been done on seven patients who had recovered from Graves’ Disease and died later of other causes and their thyroids were studied very carefully. These patients were found to have thyroids that showed complete regression of hyperplastic changes. So apparently it is possible for the thyroid to become fully healthy again, at least in some people.

[Author]

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