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From:
Anne Albright <[log in to unmask]>
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Date:
Fri, 2 May 1997 10:13:44 EDT
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Olga,

        I had/have Graves' and finally got off my thyroid medication
and have been off for over a year. I went hypo a few times and completely
backed off the med (Tapazole), until I went hyper again. This went
on for a couple of cycles. Eventually I became fairly stable and when
I'd feel like I was getting hypo, I'd back off just a little on the
med -- just a very little, maybe 2.5 mg (by splitting my 10mg pills).
Sometimes I'd add back on and wait a while and then try tapering
again. At the end I was taking about 2.5 mg every two days. This
eventually worked for me. It was tapering very slowly and by very small
amounts based on how I was feeling. My doctor was very aware of what I
was doing and he suggested doing it this way, but I did go even
more slowly than he suggested. I don't know if tapering had anything
to do with my eventually getting back to normal, but that's how I did
it, and it worked.

        I cannot imagine why you are taking both Tapazole and Levoxyl
since they have opposite effects. But then I am not a doctor.

        One thing that helped me was that my doctor explained that
the thyroid can store up thyroid hormone that can last weeks or months.
When you get hyper you have a whole lot of hormone stored up. You take
Tapazole (or similar drug) and your thyroid slows down  making the
hormone but you still have vast quantities stored up which your body
is using to make you hyper. Then when you finally use that up, your
thyroid is so suppressed by the medication that you don't have enough,
and you tend to get hypo. Then you back off the Tapazole, ad infinitum,
it seems. (I am not saying this is a scientifically correct explanation
but it sure did seem to be likely based on what was happening to me.)

        It is extremely difficult to get regulated because of the
delayed effect of the medication due to the storage of thyroid hormone.
It can drive patients and their doctors nearly crazy. I have been told
that radiation is the "treatment of choice" and I wonder if it is
because if you go on and kill the thyroid you don't have to deal with
the tremendously extreme swings and difficulty in getting stable, and
you don't annoy the hell out of your doctor. But then you are
eliminating any chance of recovery. I am glad I waited. I know I am
susceptible to a recurrence, but so far things are ok. (Let me
emphasize that I am just talking about Graves' -- other thyroid
conditions have different pathology.)

                        Anne



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                    [x]  None of the Above
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Anne Albright / [log in to unmask] / (919) 677-8000 x6323 / R4335
SAS Institute Inc. / IDB Testing / SAS Campus Drive / Cary NC 27513

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