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  • Anonymous
      Post count: 93172

      Hi: I know how you feel.. I am also the only one in the family with Graves and with the eye disease also..And.. to add injury, I also have vitiligo and the only one with that too.. I was just diagnosed a couple of months ago and not feeling too bad except when I think too much.. My eyes are swollen etc but not too far out as yet and I’m hoping my doc is right that I may stay where I am.. Who knows? They don’t seem to know anymore than I do reading this board.. I hope things go well for you and don’t you wish everyone would quit telling you that you look fine and worry about nothing??? I for one am SICK of it.. Noone can understand this, not even the doctors so why should family.. Keep up the good face and you do seem to feel better..

      best wishes, Ricki

      Anonymous
        Post count: 93172

        Hi Maria
        Well like you I was also misdiagnosed 3 times and a friend actually suggest overactive thyroid due to noticing weight loss I would have never detected. The fact that you skipped drugs and went straight to radio active iodine is interesting. Were you extremely thyrotoxic at the time? I was at a very high level and am currently on medication which is helping but if now I will then have to move onto the Iodine treatment.
        I guess the most frustrating thing about this is not knowing how far you should go to control it, my friends mother also had GT and because she wasnt methodical with her medication she was operated on and had part of the thyroid removed. I would be interested in knowing how your treatment is going and the effects of the radioactive iodine treatment.
        Take Care. Yola

        Anonymous
          Post count: 93172

          Dear SKK,

          I am new with Grave’s Disease also. I was just diagnosed 2 1/2 months ago and am now on anti-thyroid drugs. I also have one eye that is more wide open that the other, which is the only reason I went to the doctor. I went to an ophthamologist first who knew immediately what was wrong with me. He sent me to an internist, who in turn sent me to an endocrinologist. You might already have this resolved, but what I was told to do is keep my eyes moist at all times. It is imperative. I use lubricating drops, not just tears, but something with a moisturizing lubricant in it in the day time, and at night I was told to use ointment in my eyes. The eye doc also recommended that I tape my eye shut at night to keep it more moist. I was disappointed to find out that my eyes may not get better, and if fact, it is almost like having a separate disease of the eye. I would highly recommend finding a good eye doctor who knows how to treat “thyroid eyes”. It can make all the difference, and is very important for the health of your eyes. I hope this helps. Donna

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