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  • Anonymous
    Post count: 93172

    Hi, Sue!

    Yes, March 1st will be three years since I had RAI. My blood test
    levels have inched towards abnormal *very* slowly. After a
    year, I decided that I was going to be on the 10 year waiting
    plan as happens with some people (which everyone neglected to
    tell me before I decided on the RAI route). That bothered me and
    I bothered my doctor for awhile until I turned stubborn (or saw it
    as a big chance to truly try my patience) and decided I’d just wait
    it out no matter what. I was determined to get on with my life,
    which I did and have almost managed to finish a Masters degree
    before I become totally hypo. Probably the best part of it taking
    this long, is that I have learned to have an *enormous*
    amount of patience (which I don’t think I really lacked before).
    Plus, I now know what level I was at number-wise on my blood test when
    I felt the best. My *great* time lasted 5 or 6 months! All in all
    the slow changes have made me *very* aware of when something new
    is happening in my hormone levels and I know exactly what to look
    for in physical/mental changes. Now if I could just get my doc
    to believe that I know this stuff…. :)

    From my understanding, the length of time that it takes depends
    upon the goal set by the doc giving you the RAI. Some go for
    a euthyroid state while others go for total destruction. Apparently
    my docs were shooting for euthyroid without filling me in on that
    part…back when I was totally naive about docs and GD. FWIW, I read
    a medical book shortly after having RAI that gave percentages of
    likelihood for each year following the treatment of becoming hypo.
    I was 25 years old when I had RAI and I figured that I had a 100%
    likelihood of being hypo by the time I was 40. Of course, I can’t
    remember where I found these stats nor can I find the book. (I’ve
    tried.) I’m so close to being out of the normal range now that
    I’m assuming I will be technically hypo in a couple of months and
    start replacement. I don’t know about it all going on and on, just
    that you will become hypo down the road whether its in 6 weeks, 6
    years or more after RAI. It’s the natural progression of the disease.
    Actually, I would have loved to have stayed in my euthyroid state
    a little while longer, because now it is time for those bothersome
    problems to start creeping up on me. Can’t say that I’m not
    prepared for them though. The reaction of my doc is really the
    only thing that I was unprepared for, but he’ll get over it or I’ll
    get over him by finding another doc! You say that you are having
    similar symptoms to mine? Have you had a blood test lately?
    You might be getting close to hypo now too. You should ask your
    doc about it definitely, because no one can predict exactly when someone
    will go hypo after RAI. Hope all this rambling helps. Thanks for
    the reply. I’m not glad that it has taken you a long time too to become
    hypo, but I am glad to find that I’m not the only long-timer out here.
    I was beginning to wonder if I was the only specimen of my kind! :)

    Best wishes (for lots of patience),
    Sheila H.

    Anonymous
    Post count: 93172

    Sheila: I became hypo within 4 months and then started synthroid. I have been on synthroid for 1 1/2 years now. My TSH level is 2.1 out of a range of .40 to 4.2 – so I think I’m in the middle, but my bothersome symptoms haven’t gone away – I thought once I was completely on level (since June of this year) all these little symptoms would go away and life would be happily ever after. Am now wondering if that’s so. I share your feelings on doctors – have switched around a few times. Currently, I’m letting my internist handle my GD and he blows me off saying I just have fluid problems and that my weight gain is of no result of the Graves. Am also considering going back to an Endo on this. I am in hopes that you will find another doctor that will listen to your concerns. This Support Group has helped me know that there are others out there like me and I am truly grateful for that. Let me know how you do in finding a new doctor. Take Care, Sue

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