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  • Anonymous
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    Post count: 93172

    Bobbi,

    I think a lot of the fear stems from the permanence of RAI. Once
    you’ve had RAI, for better or worse, you can’t undo it.

    Linda

    Anonymous
    Participant
    Post count: 93172

    I asked my endocrinologist about this issue before deciding on RAI. I also searched through medical data bases to try to come up with some answers on my own, from recent research. The answer is that they “think” that in a small percentage of cases (2-5%?) that RAI may aggravate eye problems. You can get Graves eye disease without thyroid involvement, before you are even diagnosed, let alone treated. And there are no guarantees that taking the antithyroid meds you won’t come up with the eye problems either. But, my endo will not recommend RAI if someone already has Graves eye problems, just to be on the safe side.

    I am finding it interesting to read about all of the fears associated with RAI. All of the treatment options we have as Graves patients are RELATIVELY safe. RAI is, to my mind, the safEST because it is the only one which doesn’t present a very small chance of having a fatal side effect. Yet, this is the treatment that seems to generate the most resistance and fear. I don’t get it.

    Bobbi

    Anonymous
    Participant
    Post count: 93172

    Can anyone tell me exactly what happens when you get the eye disease?
    How does it start, what does it feel like. My eyes are dry, scratchy,
    gritty feeling for the last year. But now, my lids are getting swollen and puffy
    and red looking. They are sensitive to light and it seems harder to see.
    Is this how the eye disease starts? Any info will help. Thanks Amee

    Anonymous
    Participant
    Post count: 93172

    Hi Amee! You have described exactly symptoms I had with my eyes
    prior to protrusion. I understand most people do not go beyond a
    little lid swelling with red irritated eyes. Keep positive thing
    that you will be one of the lucky ones. I started having a few vision
    problems with my close it reading vision area first. I hope this helps
    Margie

    Anonymous
    Participant
    Post count: 93172

    How long did you have these symptoms before the eyes bulged out?
    What does that feel like? Does it hurt? Do you regularly see an
    opthamologist? Thanks for your help. Amee

    Anonymous
    Participant
    Post count: 93172

    the eye problem is one of the most worrying

    i am now in the hypo stage and a doctor friend of mine just explained that you have fatty tissue behind the eyes which as you gain wait seems to enlarge.
    but i’m really worried – i must say – if anyone can help reassure us about whether we should see an eye specialist i would really appreciate it.
    as i understand it from my now sacked endo, there are two kinds of eye problems – one that you get with the hyper stage and one with the hypo. the hypo will go away – or so he tells me – as my levels reach a more normal state.

    marysia

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