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Re: exopthalmos

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Hi ,

For me, I had very minor symptoms on and off over several years and they

always went away. Last April, 5 years post RAI, the eye disease hit me full

force and I have been dealing with it since then.

My theory is because RAI does NOT suppress the TSI antibodies, and there

wasn't much left to my thyroid for those antibodies to attack, they started

in with the eyes. I am on PTU, very low dose, for my eyes only, and on

thyroid replacement hormone for my graves. The PTU is a non-traditional

treatment for my eyes, it is not used for that, but I have very good doctors

who will push the envelop along with me, in some circumstances. I refused

eye radiation totally, and refused steroids unless I tried this, if this

didn't work, then I would have followed my doctors recommendations for the

steroids, much as I would have hated it.

I do need to stress that this PTU therapy for my eyes is working for *me*,

it does not mean it will work for everyone, nor does it mean it will work

long term, but it is much easier to deal with than the side effects of the

steroids, in my opinion, and has made life much easier.

Take care,

Jody

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