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  • Anonymous
    Participant
    Post count: 93172

    Hi, Laura! Welcome to the BB!

    From your previous posts I understand that you are about to have RAI
    treatment. While others on the BB have good advice and have raised
    thoughtful questions, I want to remind you that not everyone has problems
    with RAI. While there are no guarantees regarding eye problems, remission
    rates, childbearing problems, and what have you, RAI can be an effective,
    easy way to gain control of your Graves’ Disease and get you back on the
    road of life. In fact, there are no guarantees with any of the Graves’
    treatments.

    Many of the posters on this BB are new to this disease or are having
    continuing problems. The majority of people with GD have received and
    responded well to their treatment, and have gone on with their lives.
    Many of those warriors received RAI, and you won’t be hearing their stories on
    this BB. Personally, I had RAI treatment in 1990 and, after minor adjustments
    with my thyroxine, have had stable thyroid levels since. I’m happy, healthy,
    and don’t regret taking RAI.

    I’m not saying to throw caution to the wind and go for RAI without a second
    thought. But, I also don’t want you going in for your treatment feeling
    like you’re making a big mistake. I wish that you feel comfortable and
    confident with your decision, and hope for the best results possible.

    The only absolute in Graves’ Disease is that everyone has a unique experience.
    I hope that your experience will only inconvenience your life for a short
    while. Best of luck next week!

    Wishing you health and happiness, Debby

    Anonymous
    Participant
    Post count: 93172

    Laura, you may want to keep in mind that just because there is a smaller
    possibility of achieving remission doesn’t mean that it is nonexistent.
    Also, whether you want to try for remission should be your decision,
    not your doctor’s.

    I do have to say that one month seems like a very short period of time
    to decide to kill off an organ, but you have to make whatever decision
    you feel is best for you.

    Also, I tend to be the kind of person who wants to avoid radiation
    exposure if there is a reasonable alternative. Supposedly, achieving
    a euthyroid state by taking an anti-thyroid drug before RAI makes the
    possibility of suffering thyroid storm (which is life-threatening)
    smaller. If you chose to do that, you could use the time on the drug
    to do more research to be sure that RAI is right for you rather than
    continuing with the drug and hoping for a remission.

    Supposedly, the best chance of remission is 50-60% if you are willing
    to take an anti-thyroid for two or more years. Your chances may be
    somewhat smaller due to the length or severity of the disease, but you
    still may want to consider trying it (assuming, of course, that you can
    take an anti-thyroid drug).

    Also, you may be interested to know that I recently read some
    information in a medical textbook written by some British doctors
    regarding RAI and childbearing. In western Europe, doctors usually
    recommend AGAINST RAI for women of childbearing age because they
    believe that there is no conclusive proof that it will not cause birth
    defects later even if the patient waits the recommended length of time
    before becoming pregnant. They specifically mentioned that this is a
    difference between European and U.S. doctors, in terms of philosophy.

    I’m not saying that you shouldn’t have RAI if you plan to have children
    later, but you may want to investigate further before you make a final
    decision.

    Aside from the childbearing issue, I have noticed that there seem to be
    a lot of people on this bulletin board who have had RAI and are
    miserable due to the fact that their doctors don’t seem to be able to
    find the right level of thyroid hormone that allows them to feel well.

    Another consideration before RAI is that you may want to be sure you
    don’t have Graves’ eye disease at a subclinical level before you have
    the RAI treatment. Supposedly, RAI can make Graves’ eye disease worse
    in some people, but, if the doctor knows you have the eye disease, he
    or she can prescribe a drug to take during the first month after RAI
    to prevent the RAI causing extra damage to the eyes.

    Just some things to think about before you have the treatment. Best of
    luck to you, whatever you decide is best for you.

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