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  • Anonymous
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    Post count: 93172

    I’ve had two RAI’s. The first was in Oct., ’98, and the second on March 30. Both of them made my eyes worse. Before I had my first RAI, I had swelling and bulging of my eyes. I guess I’ll make this in a list form as to what happened after my RAI’s, as there is so much: They’re blurry, even though I received a new prescription of glasses after being checked by an ophthalmologist in Jan. I wore contacts before my GED; double vision occasionally when my eyes are very tired; flashes; floaters; I had tearing, which would run down my face at times; constant redness; swelling continued; bulging continued..

    My first RAI wasn’t successful. The doctor said he didn’t think the radiologist gave me a high enough dosage of RAI, which was 10 millicuries. In March I received a fraction over 10 millicuries, and they said I probably still had some radiation in my thyroid from the first one. However, consider me an exception, as it is rare to receive a second RAI.

    It’s been a month now since my second RAI, and I can tell you that my eyes are much better. They’re still red, blurry and I have double vision still occasionally. Now they only tear slightly, and that’s only in the mornings when I first awaken. I used to carry a tissue in my pocket all the time, now I don’t. The swelling and bulging are gone. I just had my levels checked today, so I don’t know where I stand at the moment. On April 13 I was high normal.

    I do want to emphasize that this is my experience. It’s amazing how many people could be reading my post, and differing with their symptoms. I hope you hear from others too. I had a rough time after my second RAI, and still am to a certain extent, but not so much with my eyes. I know how hard it is to make decisions with this awful disease. My second RAI was a difficult one, but that’s the one that worked. I considered surgery, and if this one didn’t work, I would have taken that route.. Although I had a rough time physically, mentally and with my eyes after the RAI which worked, I’m glad I did it.

    Good luck to you and God bless.

    Maia

    Anonymous
    Participant
    Post count: 93172

    My endo told me (last month on first visit) that because I am showing symptoms of TED, it makes RAI a little more difficult. But, they can do special things to protect the eyes (he did not elaborate here) and then I would need to take steroids for awhile afterwards. Also, long term outlook might be surgery, depending upon how it progresses. I’m reading the book by M.Surks, M.D. (I might be alittle off here, I’m getting brain fuzz) that is receommended on the NGDF website, and just getting to his discussion on TED. This book has been very helpful.

    Anonymous
    Participant
    Post count: 93172

    Thanks for the info. Does anyone know if surgery is better alternative with respect to thyroid eyed disease?

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