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Re: [GIWorld-Hepatitis] Digest Number 236

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  • 2byteme@bellsouth.net
    Dear Gina: For an initial lab screen of the thyroid, the TSH is not enough. You need a full thyroid panel, which should include the TSH, T-3, T-7, Thyroid
    Message 1 of 9 , Jul 29, 2000
      Dear Gina:
      For an initial lab screen of the thyroid, the TSH is not enough. You
      need a full thyroid panel, which should include the TSH, T-3, T-7,
      Thyroid Uptake, etc. This is just a start if the tests are abnormal, or
      close to abnormal, there are other more indepth tests that should be
      considered. But, if these are all "WNL", (Within Normal Limits), then
      you can pretty much say the thyroid is OK. The TSH is only good as a
      partial monitoring after a diagnosis of thyroid disease is made. When
      someone is stable on thyroid medication, the TSH may be enough to use a
      regular follow up. The thyroid is a gland that, due it's hormonal
      action, can affect multiple other glands and their hormonal secretions.
      It can be a domino effect=if one falls, it can change many, if not all
      other levels, so it's important that this be properly checked.
      I think I posted once before that I believe you need someone that
      will take responsibility for coordination of all your care, and even
      then, you should stay on top of it. Otherwise, you might wind up in
      severe trouble. If you want to discuss more details, please email me
      direct- 2byteme@.... Marty
    • 2byteme@bellsouth.net
      Dear Gina: I am writing as your messages were posted. I would not suggest your taking, at this point, anything that is not related to your treatments. If you
      Message 2 of 9 , Jul 29, 2000
        Dear Gina:
        I am writing as your messages were posted. I would not suggest your
        taking, at this point, anything that is not related to your treatments.
        If you go on the combo, you will probably get a degree of allopecia=hair
        loss. As a male that has shot the whole genetic hair loss theory down,
        (mother's father died with a full head of hair at 96), I can understand
        being upset. If it really is something that is going to cause stress, I
        would suggest you try a wig, or a hair weave.
        With your thyroid function unknown, and there being other
        possibilities that are unknown, adding anything else may not be in your
        best interests. Some people experience different effects of medications,
        (prescribed, over the counter, and herbal), then when they are not
        taking the combo. If you add an unknown to this whole thing, and some
        type of reaction occurs, you'll have a very hard time determining, or
        may never know, what caused what. Also, thyroid disease can cause hair
        loss.
        The hair loss usually does not become significant until 3-4 months
        into therapy, so at least wait until you are stabilized on therapy, your
        labs have stabilized, and you get a better idea of how things affect
        you. I believe it is in your best interests to wait, see how you are
        doing, and then, if you still want to, explore other items. Marty
      • 2byteme@bellsouth.net
        Dear Suzy: What is your genotype? That will determine how long treatment should be. If you are 1a or b, it is 48 weeks, if tolerated, no question. The other
        Message 3 of 9 , Jul 29, 2000
          Dear Suzy:
          What is your genotype? That will determine how long treatment should
          be. If you are 1a or b, it is 48 weeks, if tolerated, no question. The
          other genotypes have some good guidelines, but, it is necessary to know
          where you are. At the 22 week mark, I would have another viral load
          done. If undetectable, and you are not 1a or b, you probably will stop
          at 24 weeks. There is no general reasons to go for more, again based on
          many factors.
          If you are 1a or b, your HMO should not give you a hassel about
          another 24 weeks, because it's the accepted standard. If you need to, we
          can talk about how to deal with them if there are issues. I would not
          skip any time if possible, but, 1 week is about all. If you stay off any
          length of time, and could benefit, you chance quasispecies, or
          resistance. It's not worth the chance.
          If you want a list of articles, let me know your genotype, and if
          you had a biopsy, the results, as well as your last viral load, and I'll
          be glad to get some current info for you. Marty
        • 2byteme@bellsouth.net
          Dear Suzy: Keep a log with at least 3 notations everyday, such as morning, noon and night. Add to that, in the morning, how you slept and felt upon wakening,
          Message 4 of 9 , Jul 29, 2000
            Dear Suzy:
            Keep a log with at least 3 notations everyday, such as morning, noon
            and night. Add to that, in the morning, how you slept and felt upon
            wakening, the weather, and any other information. Then rate the tinnitis
            on a scale of 1-10, with 1 being nothing and 10 being the worst
            possible. For the noon one, add short notations on what you did during
            the morning, the weather, and any other influences, eg: boss came down
            on me, bad morning with kids/husband etc., and again do the 1-10 scale.
            The night should be the same info used in the noon one, and reverse the
            morning, eg: house was a mess, kids not doing homework, etc., and 1-10
            scale. Don't look at what you wrote daily, just go week by week, or that
            could tense you up.
            Other things to note is whether you were sitting, standing, reaching
            etc., for any period of time. Did you have intercourse and did that
            change anything? Did you have trouble sleeping, or falling asleep?
            Remember you are looking for any pattern, which may not be as obvious
            until you see that at such and such times, or dates, when you felt, or
            did, the same or similar things, the pain was worse, and if you did
            certain things, it got better. What may sound stupid at first, may not
            be so when you find there is a pattern.
            After a week or 2, you can try some relaxation exercises, hot baths,
            etc., and see if that changes the 1-10 scale. Write down any meds taken,
            and anything else, no matter how ridiculous it may sound at the time, in
            the journal.
            THis is a good place to start, and then, take it to the next step if
            needed. Let me know if I can help with anything else. Marty
          • 2byteme@bellsouth.net
            Dear Dee Dee: The past is the past, and no one knew. The sex, drugs and rock and roll age was fun, but, that was then, and you have to deal with now. If you
            Message 5 of 9 , Jul 29, 2000
              Dear Dee Dee:
              The past is the past, and no one knew. The sex, drugs and rock and
              roll age was fun, but, that was then, and you have to deal with now. If
              you gave tainted blood, you are probably one of the thousands that did,
              and you did not know. Maybe the blood was used, or maybe not, you'll
              never know, and can not do anything about it now. So don't beat yourself
              up about it, it doesn't help you, or anyone else. Besides, maybe your
              blood was what saved someone's life, and they either never got the
              virus, or were placed into full remission. Think positive.
              As I say to many of my patients, if I could go into the future by 5
              years, then return, I could then tell them what they should do. But, we
              can not, and all anyone can do is work with the best information
              available today, and not play the "what if" game. It won't change
              anything except give you more stress, without any changes-so don't beat
              yourself up over something you never knew about, nor intended any
              problems with. That's the past, and can not be changed, so live for the
              present and future. Marty
            • Suzy Balone
              Marty I am 1 b will send you the results of the lab work later, may have to convince my GI doc of going 48 weeks however. Thanks talk to you later Suzy
              Message 6 of 9 , Aug 2, 2000
                Marty

                I am 1 b will send you the results of the lab work later, may have to
                convince my GI doc of going 48 weeks however. Thanks talk to you later

                Suzy



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              • claudine intexas
                ... Dear Suzy, Are you PCR undetectable? If so, I can t believe any doctor would want to stop you, a 1b, at 24 weeks! That would only lead to relapse. If
                Message 7 of 9 , Aug 2, 2000
                  --- Suzy Balone <suzybalone@...> wrote:
                  > I am 1 b will send you the results of the lab work
                  > later, may have to
                  > convince my GI doc of going 48 weeks however.

                  Dear Suzy,
                  Are you PCR undetectable? If so, I can't believe
                  any doctor would want to stop you, a 1b, at 24 weeks!
                  That would only lead to relapse. If this is the
                  situation, there is a lot of literature that clearly
                  states that genotype 1b's should do 48 weeks. If you
                  are NOT undetectable, then it is pointless to continue
                  treatment unless your only goal is to improve the
                  condition of your liver. If that is your goal you
                  might want to talk to your doctor about that, and
                  discontinue the ribavirin, since it is the interferon
                  helping the liver. There is also literature supporting
                  this thought.
                  If you are not undetectable by now, the chance of
                  becoming undetectable following the same treatment
                  protocol you are on now is very, very slim. I hate
                  saying that, but it is the truth. I know, I've been
                  there myself, and being a 'non-responder' myself, I
                  read everything I can get my hands on that even
                  remotely pertains to non-responders, and genotype 1b.
                  A more aggressive approach and a change to another
                  interferon MIGHT help, such as daily high dosing with
                  Infergen. Or, what I plan on, waiting for the Roche
                  version of pegylated interferon.
                  I sure hope that I wrote all that for nothing and
                  you are really undetectable!!!
                  Take care



                  =====
                  Claudine
                  claudinecrews@...

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                • Dee Dee Taylor
                  Hi Marty and All, Staying positive and putting the past into the past isn t easy when the first question that comes out of people s mouths when you disclose
                  Message 8 of 9 , Aug 6, 2000
                    Hi Marty and All,
                    Staying positive and putting the past into the past isn't easy when the
                    first question that comes out of people's mouths when you disclose you have
                    hcv is "How did you get it?" I share in Scott Foxes anger and frustration
                    on this whole thing. I appreciate your comments and all the advise I've
                    received.......Dee Dee


                    >From: 2byteme@...
                    >Reply-To: GIWorld-Hepatitis@egroups.com
                    >To: GIWorld-Hepatitis@egroups.com
                    >Subject: Re: [GIWorld-Hepatitis] Digest Number 236
                    >Date: Sun, 30 Jul 2000 00:55:50 -0400
                    >
                    >Dear Dee Dee:
                    > The past is the past, and no one knew. The sex, drugs and rock and
                    >roll age was fun, but, that was then, and you have to deal with now. If
                    >you gave tainted blood, you are probably one of the thousands that did,
                    >and you did not know. Maybe the blood was used, or maybe not, you'll
                    >never know, and can not do anything about it now. So don't beat yourself
                    >up about it, it doesn't help you, or anyone else. Besides, maybe your
                    >blood was what saved someone's life, and they either never got the
                    >virus, or were placed into full remission. Think positive.
                    > As I say to many of my patients, if I could go into the future by 5
                    >years, then return, I could then tell them what they should do. But, we
                    >can not, and all anyone can do is work with the best information
                    >available today, and not play the "what if" game. It won't change
                    >anything except give you more stress, without any changes-so don't beat
                    >yourself up over something you never knew about, nor intended any
                    >problems with. That's the past, and can not be changed, so live for the
                    >present and future. Marty
                    >
                    >

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                  • RLWINNE@cs.com
                    Dee Dee My husband shares your frustration about the same question how did you get it? He also donated blood not knowing if he had the Hep C at the time. He
                    Message 9 of 9 , Aug 6, 2000
                      Dee Dee

                      My husband shares your frustration about the same question how did you get
                      it? He also donated blood not knowing if he had the Hep C at the time. He
                      and his dad donated blood every month from the age of 16 years old until he
                      was 28 and he is 41 now. He has found a way to live with it now but felt
                      really guilty about maybe passing it on that way not knowing he had it since
                      we do not know how long he has had it. He hadn't given blood since they
                      started the testing they do on the blood when in 89 or 92 I can't remember
                      the year now. Who cares how you got it - the main issue is to take care of
                      it now the best you can. I know it is easy for me to say but you are under
                      enough stress to add that one to it and stress is one of the worse things for
                      this disease. Stay potitive!!

                      Winne
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