[Ski]

#1065343

I’m really glad you have come to a normal point ~ while it’s true that too many doctors push patients into RAI quickly, I can tell you for a certainty that this is not a "self-limiting event" that you have now "beaten." You have Graves’ Disease, there is no question. You are in remission, and that is WONDERFUL. Keep a vigilant eye on symptoms, because stressful events are likely to bring about a jump in symptoms for both your thyroid and your eyes. Remember also that the thyroid disease and the eye disease follow separate courses, so you may have changes in your eye symptoms but none in your thyroid hormone levels, or vice versa.

They know a LOT about the mechanisms that occur after Graves’ Disease comes on, but NO ONE knows why the antibodies rise and fall. We know stress CAN cause an elevation in antibody levels, and thus symptoms, but some people experience *no* particularly large stress event, and yet their thyroid hormone levels skyrocket, or their eye symptoms suddenly become severe.

Keep your body as healthy as you can, that will ALWAYS help, but please remember that this is something you carry with you, that may strike again. That’s one of the bigger reasons that doctors recommend RAI right out of the gate (in my humble opinion), because they see people go in and out of remission, to their mind it’s "easier" just to go to nothing and get replacement hormone. Of course, it’s not their thyroid, is it? ” title=”Very Happy” />

[mifis]

#1018505

Hi, I wanted to share my story with you all. I was diagnosed with GD in April 2009. My TSH was non-existent and the endo said he hadn’t seen numbers like mine before and wanted to do RAI immediately. I said no and tried diet changes and such for a few months until I felt so sick I started taking the tapazole. Endo had prescribed 40 mg/day but I negotiated with him to take 30mg/day and started that in August 2009. By early October 2009 I had put on 16 pounds, was freezing all the time and dropped my own dose to 20mg/day. Next visit, endo told me I was hypothyroid and to go off the meds completely. Within 3 or 4 weeks I was hyper again and started on the tapazole again at 5mg/day. By January 2010 I was feeling hypo again, but this wasn’t showing up on blood work so I went off the meds again. I was also starting to get some protrusion of my left eye and double-vision and discomfort visually. Endo said "OK, but you’ll go hyper again because the anti-thyroid antibody is high". So I stayed off the meds and the plan was to have blood work every 4 weeks to check my levels. By February, my levels were inching closer to normal, by March they were in the normal range and they have been there ever since. They were never in the normal range when I was on the tapazole. My eye has also retreated to just about normal and the visual disturbances have stopped. I will see the endo again next week and sure to hear that it’s remission and may come back, but WOW! I might have agreed to have my thyroid nuked! I think it’s really important to trust your intuition with this thing. Clearly, medicine doesn’t know that much about the thyroid and what affects it and the treatment options are cookie cutter. This is an auto-immune disease and the thyroid is the victim.

There was enormous stress in my life in the 12 months before my diagnosis and in hindsight I had been having symptoms for 6 months at least before diagnosis but thought it was all related to peri-menopause. I really believe that this whole episode was a reaction to extreme stress and was also self-limiting. I hope my story can give you hope that things can change for you and help you to trust your gut when it comes to what treatment options are right for you. That will be different for everyone, but just don’t allow yourself to get railroaded into something that doesn’t feel right.

Best of luck to you all!

[mamabear]

#1065344

I too was told to do RAI and chose not to. I did go on PTU and was able to achieve remission, I got pregnant then came off of the PTU. Was able to get pregnant again then had to go back on PTU due to having had a virus that kicked me out of remission. Badly i might add!
Then I went back into remission and was able to get pregnant again.
Then had to have PTU again for a short period.
I am currently in remission now 3 years with no medicine at all.

Please do not think that Graves is beaten, it can come and kick you down at any time. Like SKi said, keep yourself healthy because it will help. Less stress always is a plus. But know that this isn’t gone for ever. You might never have a lapse again but you will always have the disease as might your family members passed down.

Keep up the good work

[mifis]

#1065345

Thanks for the perspective. I do keep myself healthy and intend to continue to do that. And I don’t plan on having any events as stressful as what I experienced in 2008, but hey, you can never predict that stuff, can you?

My point was that I think it is important for patients with ANY diagnosis to rigorously question their care providers and be proactive in deciding which treatments are received.

Interestingly, my husband’s cousin was also diagnosed with GD at the same time as me and also achieved remission very quickly. His course of medication was very different from mine, started low and had subtle changes rather than radical shifts like I was prescribed. My endo told me I was unlikely to get any help from the anti-thyroid meds, however, so I think that was really off the mark.

Best of luck to you all!

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