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  • Anonymous
    Post count: 93172

    Hi Claudia (that’s my wife’s name too)

    A good eye doc can often tell by looking at you if there is eye involvement. One of the main indicators according to my first doc is glaucoma when you look up. Mine skyrocketed when my eyes went up. Aother thing that showed up (I hadn’t realized it) when the nerve is involved is degradation of color vision, so it is good to get that checked. If your eyes are dry he can do a “Shermers” which checks for the rate of tearing. Basically they hang a little rag off your eyelid and see how fast it wets. What a thrill.

    Good luck at the doc’s!

    Bruce

    Anonymous
    Post count: 93172

    Greetings,

    I might be able to shed some light on your questions. I am doing this from
    memory so be careful about what you think you heard (or in this case read) what
    I said.

    About 15% of people with GD get the Graves eye involvement.

    About 90% of folks who have RAI do well and have no problems after the atomic
    cocktail. Like Bruce said those who you are seeing here are the 10% who have
    on-going problems.

    There is some corrolation between Graves eye disease and RAI. We have a few
    bulletins on the subject. Go to the top of the page and click on the NGDF home
    page and go to bulletins. I was told that there was a small percent chance my
    eyes would get worse after RAI. I had severe proptosis and in hindsight RAI
    probable should not have been an option for me. Had I to to it over again I would
    have opted for the surgery. Bruce and I have talked about this and for some
    reason it does appear that if your have had the tyhroid removed the Graves eye
    disease is stopped a a vast majority of cases.

    Anyone with GD whould see a eye doc right away. Changes happen gradually and
    you may not notice until it is very late or until damage is done. Color is the
    first thing to go. Reds, followed by browns then greens. My cousin had GD and
    he worked for Coke Cola and he went to his boss and asked when they started to
    change the color of the cans (red looked brown) and his boss thought he was going
    nuts. That was his first indication that he had a problem with his eyes.

    I kind of opened a Pandora’s box when I mentioned my cousin. I mentioned him in the
    past tense. I will get e-mails on did he get better, is he in remission etc. The
    answer is a very painful one. Tiger was diagnosed at 23 with GD. He had a hard time
    accepting that he had a problem and looked for alternative meds and refused to take
    his meds. He ended up going into thyroid storm and into intensive care. During this
    whole time I kept in close contact with him and his Mom and Dad. Tiger’s wife left him
    when he became ill and took their child with her. Can’t say as I blame her since Tiger
    was not taking his meds and would go into fits of anger and have heart attacks. We all
    tried to get Tiger help but he was raised in a family where it was considered un-manly to
    ask for help. Tiger took his own life by shooting himself through the neck in July of
    this year. The day he killed himself is the day the BB came on-line and I started to
    get calls for help and answers. So now you know why I caution about alternative meds
    and trying to find a cure. It was very hard to be upbeat and answer questions when I felt
    at the time I let Tiger down. I know I did not let Tiger down now. That is also why some
    of you receive personnal phone calls from me. I don’t sleep some nights worring about
    some of you. So now you know there are people who care and are there for you. Last
    month I talked to a lady until well past 1 AM getting her through the crazies as she put it.

    Well got to go. Got myself all misty eyed again. I have said it before and I will say it again.

    I have GD and life can be good.

    Regards,
    Jake

    Anonymous
    Post count: 93172

    Hi Rosemary,
    I tried to send you email last week, but ‘puter said you didn’t get it. Is that right?

    To Anyone,
    Does anyone have any percentages or numbers on how people get along after RAI? What % go into remission and stay there, or get worse, or stay the same? What % of GD patients get Graves’ opthalmopathy? Can an opthalmologist tell from an examination whether or not you are getting it even if your symptoms are minimal or non-existant?
    I have an appointment tomorrow a.m. with an opthalmologist. I’d like to hear from anyone prior to that in order to better formulate questions.
    Thank you so much, Claudia

    Anonymous
    Post count: 93172

    I can relate. Ever since I was 6 years old, I wanted to commit suicide. And what was on the back of my mind? A little voice says that I had a thyroid problem.
    Sorry to hear about your cousin. That must have been an awful experience.
    I have cousins who have hypothyrodism. My aunt has a lymph node problem and my dad had a lymph node problem. My mother has had thyroiditis, which went away. I have GD.
    If you ask me, it doesn’t run in the family. My eyesight is good still. My ear is giong back to normal although I can only hear mono tones and no acoustic sounds. Try that one on for size!
    No one has had a hearing problem on this BB. Am I the only one?

    Anonymous
    Post count: 93172

    I have a servere hearing problem with may be one of the complications of
    long-term thyroid problems. I developed a loss along with the thyroid
    problems I had as a child. By age 40 was 70% in one ear and 30-40% in
    other. I had to give up my teaching career because even with the best
    hearing aids, I cannot hear well enough to teach. My loss may be due to
    otosclerosis which is another associated auto-immune disease where bone
    overgrows those 3 little bones and they cannot vibrate. As you may know,
    thyroid hormones do affect the growth of bones and calcium metabolism.
    It makes life harder, but not without joy.

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