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  • Anonymous
    Post count: 93172

    Gylnis asked me about the approach to Graves in Germany,
    since this might interest other too, I will again tell
    a little bit about it again.
    I have been diagnosed with Graves for the first time
    beginning of 1993. I was feeling pretty lousy by that
    time. My eyes were poping out and I had double vision.
    I was being treated by my regular doctor and also seen
    by the staff of the DKFZ (German Cancer Center) who had
    the appropriate machines for diagnosis. They suggested
    a treatment with CArbimazol (equivalent to PTU). Any
    other treatment was hardly ever mentioned, one doctor
    told me he would never have a young women take radioactive
    iodine the other said he would never have anyone operate
    on his precious throat. They told me I have a 50% chance to
    go into remission. Since my eyes had gotten much better after
    a while and I started feeling okay (T3 and T4 back to normal)
    I was willing to wait for remission. I went for regular blood
    tests (every 4 to 6 weeks). And remission came after 1.5 years.
    I still went for
    regular tests (about every 4 month). I was doing well for almost
    2 years when it came back. The doctor who diagnosed it didn’t seem
    to know a thing about it and directly suggested operation (that was
    while I was talking to him on the phone). I was devestated at that
    time, but I have gotten over that (over him).
    I have been seeing an endicrinologist and at same time am seeing
    a hemeopathic doctor. Both know of each other. Allthough they don’t
    exactly cooperate the don’t mind each other. Both of them were
    happy with my decision to try another round of medication.
    I guess on reason why noone really suggests Radioactive iodine is because
    there are very strick regulations about how long a person has to stay
    in hospital after the medication has been administered. This is due to
    restircted radiation laws. The German law is very worried about the effect of
    this medication might have on other people ( coming in contact with
    the treated person) . I would have to stay in a special
    hospital for more than a week. There are only few hospitals that can
    over this kind of expensive treatment and so space for it is rare and waiting lists
    can be more than a year. They really mainly use this approach for serious
    problems (like cancer). To be able to go through an operation requires
    to be euthoroid. An operation is never so exact as the radioactive iodine
    and thus really not a good option if again not really needed, so the
    second time around I took carbimazol again and 10 month later (thats now)
    my TSH is back to normal. My endo keeps me on my medication ( I have recently
    switched to PTU) for a bit longer but will eventually take me of.
    I kind of know that I still have Graves with or without medication, my
    body will most likely loose controll again. I hope hemeophathic treatment
    will, if not totally remove the possibility, make the gaps longer.
    I also now that I should be happy because I seem to be only a mild case, an
    because my eyes are really only very little involved.
    I was very worried about the medication because I wanted to have children,
    and that actually soon if possible. My endo says Operation or radioactive
    iodine does not really remove the cause of my problem. It’s not the thyroid
    causing all these but most likely a reaction of the autoimmune system. So
    thyroid or no thyroid, I will always have to be carefull and have my
    blood checked regularily, if I were to have a baby. There is a special counseling service
    in Germany (via telephone) for “medication and pregnancy”. I called there.
    They are not particularily worried about PTU (thats why I swichted to PTU).
    They say (including my endo and gynacologist) I have to be euthyroid,not
    need more than 3 times 25 mg and have T3 and T4 levels at the upper normal
    range. Most important seem to be the weeks between the 10th and 18th week of
    pregnancy. If at all they are worried about the child becoming hypothyroid,
    because the unborn might try to balance out my hightend levels. All in all
    they say there is no reason why I should not have a healthy baby. It might
    be more difficult to conceive and there seems to be a hightend chance of
    loosing the baby before the end of the term.
    But as I can gather from other womens reports on the net, it is possible.
    I will not have any operation or radioactive iodine in the near future,
    there is no pressure from my doctors what so ever. As long as I do fine
    with my medication (I show really no side effect I could name, yet) I will
    stay on this path.
    My emotions seems stable, but I have to admit, reading throuhg Glynis
    messages, I do have anxiety attacks. I am not nervous during the day, but
    I tend to really wake up at night and be totally scared to death. I haven’t
    thought about this beeing related to Graves, but really they have been
    more severe the past year, but I don’t really remember when this started.
    I would love to answer any other questions regarding the treatment in
    Germany and share my insights with other people, sometimes I am very
    busy at work and will not find my way to these pages for days and weeks.
    In German for everybody who can understand: Gute Besserung ! Kopf hoch!
    Pamela

    Anonymous
    Post count: 93172

    Thanks for the info on how treatments proceed in Germany. You write excellent
    English. My compliments to you. I tried learning German, but gave up after 3 years.
    Anyway, it is interesting to see how RAI is not used as much in other countries like
    it is here. In Japan only 2 % of the people get RAI. For obvious reasons, they are
    much more cautious with radioactive medicines than us.
    Are there any ways I can get in touch with somebody in the Hamburg area thru the
    internet? I am trying to reach my cousin but don’t know any web sites near Hamburg.
    He actually lives in Quickborn.

    Anonymous
    Post count: 93172

    Your message interested me very much. For a year and a half I have not
    felt “normal” and have been unsuccessful in getting pregnant due to a
    very irregular (if any) menstrual cycle. I have now been diagnosed with GD
    and am unsure of treatment. I am on the net searching for answers before I
    see my endo. My main concern is being able to get well but still have a
    child. I would love so much to find a homeopathic treatment but have found
    no information on this yet.

    Just wanted to say thanks for the information.

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