[Anonymous]

#1047168

Wow, twins with Graves’! Did you both get it close to the same time? I’ve read that occasionally one twin will get it and not the other.

Studies do seem to indicate that having RAI can make the eye disease worse, at least for a time. Many doctors are giving steroids concurrently with the RAI to lessen the impact. Your sister might ask about this. Going hypo seems to be bad for the eye disease also.

I don’t think anyone here can advise you about whether to have the RAI, since that depends very much on your individual circumstances and preferences. The best thing you can do is learn everything you can about all three treatment options. If you aren’t going to stay on antithyroid drugs or if a remission isn’t looking good, you will probably want to decide between RAI and surgery (both have advanages and disadvantages). When people ask me what I’d do if I could choose all over again (I had RAI), I still don’t know which one would have been best.

You and your sister might wish to call 1-800-THYROID and request their brochure on treatment options, which is excellent.

If you have specific questions about treatments, please ask.

Best Wishes,
Dianne W
Asst. Online Facilitator, NGDF

[Anonymous]

#1141733

My twin sister has TED and was wondering how she can tell that the disease is in its cold stage so she can go ahead with RAI. Anyone out there know when the eyes will stop???

[Anonymous]

#1141734

Liz, not even the doctors can tell when the eyes will stop changing. My ophthalmologist, who treats LOTS of Graves’ patients and is among the top in the field, says for some people the disease can come and go for a very long time, though for most it doesn’t return after burning itself out.

Your sister has no way of determining whether she’s in the cold phase. Her ophthalmologist should be the one to determine that.

My doctor considered mine in a cold phase when six months had passed, and waited a year to be sure before doing surgery. Still, the disease acted up again in response to the surgery, which it does for some people.

Has your sister asked about taking steroids with the RAI to lessen the chances of it aggravating her eye disease?

Dianne W

[Anonymous]

#1141735

Yes my sister is definatly going with the steriods along with the RAI treatment. We heard there was a study done and that the steriods helped so the eyes didn’t get worse will geting treated with the RAI treatment.
Her eyes aren’t as swollen as they used to be,but they look as if they are still protruding. I guess we just want hope that soon she won’t have to tape her eyes shut anymore and mabie even improve some. I guess that is wishful thinking.
Did anyone have any of the eye surgery done?

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