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  • Anonymous
      Post count: 93172

      Hi everybody,

      Nice to meet you and my best wishes for good health to everyone
      on the B.B. It’s good to know that there is a site especially for people
      with Graves Disease. Previously, I had read/posted on the thyroid board.

      I am 26 years old and have had Graves Disease since November, 1996.
      Although thyroid disease (hypothyroidism) runs in my family, my thyroid was
      always, to my knowledge, “normal”. I do remember, however, when I was
      young that my pediatrician, who, incidentally, specialized in endocrinology
      was concerned about my and my sisters’ thyroid. (I think my older sister developed
      hypothyroidism around age 12, so my doctor was rightly concerned.)

      Until recently, I had not the faintest concern or care about my thyroid.
      Really, having Obsessive-Compulsive Disorder since a child, I didn’t
      think I could handle anything more on my plate.

      Then, toward the middle of summer, 1996, I started feeling sick.
      Strangely enough, I had received a clean bill of health just before
      I went to Ireland in June, 1996. The classic symptoms of Graves,
      however, were beginning to manifest themselves. I began to experience
      rapid heartrate, sweating, tremors, headaches, weight loss, diarrhea,
      feeling hot, increased appetite, eye problems, increased interest
      and creativity (probably my two favorites out of the whole, miserable lot!).

      I thought for sure it was the fluvoxamine for my OCD that was doing it.
      After becoming thoroughly frustrated with it all, I managed to make an
      appointment to see my doctor.

      My doctor was alarmed and had tests done right away. After a battery
      of thyroid function tests that contorted my neck into the weirdest of positions
      and a number of dreary, impersonable lab technicians later, the news was
      broken to me in the darkened room of my last and perhaps least humiliating
      test (the one with the bed; I liked that one-just went right to sleep).

      “You have Graves Disease,” stated the slight, kindly radiologist
      while the handsome foreign medical student looked on.
      “Oh,” I began, “Isn’t that what JFK had and George and Barbara Bush have?”
      “Yes!” he replied smiling. I recalled later that we had both made an
      inaccurate diagnosis; JFK had Addison’s Disease, not Graves.
      I will never forget them walking out, leaving me in shock in that darkened,
      stuffy room. Not the best place to break a diagnosis.

      My physician, probably the most concerned doctor I’ve ever met, was
      extremely thorough in explaining my tests when I saw her in the next
      few days. She told me that my thyroid was very, very large and that
      she wanted to start medication immediately. The medication of choice was,
      and still is, Tapazole. I had, in the weeks to come, practically every student
      and expert feel the big “lump” in my very thin neck. I don’t think I’ve ever
      seen a doctor register so much interest and emotion as I had when each
      felt my thyroid gland.

      By now, I was feeling pretty down. What was going on? I still ask that
      question to this day. I was in the midst of recovering from a serious bout
      of OCD and (ugh) I didn’t need this. My physician (who no longer
      treats my Graves (I have an endocrinologist)) was truly concerned about
      my disorder and was always helpful in explaining the disease or listening
      to the latest symptoms I was having. She always let me know the latest
      on my tests, and, when they became too confusing for her to decipher,
      made the correct decision to send me to an endocrinologist.

      During the months of Tapazole therapy, I experienced an intial trend toward
      euthyroidism and then a sharp slide into hypothyroidism (30mg of Tapazole
      turned out to be too high for me). Recovering from the opposite thyroid state
      was a long, hard road. My endocrinologist is really very sweet but perhaps
      too laidback and too bemused by my horrible downturn. Only recently, have
      I been able to regain a sense of normalcy as we have adjusted my Tapazole
      level to 15mg per day. I will see my endo on Sep 10 to get the latest.

      I have a profound interest in curing (yes, curing!) my Graves via natural
      therapy. I caught the bug for natural therapy from the
      group and from frustration toward my illness as well as my older sister’s
      health problems (unknown to most doctors, misdiagnosed as rheumatoid
      arthritis, now thought to be fibromyalgia. Incidentally, she suffers
      from congenital vitiligo and what, in our humble estimation, may be recurrent
      hypothyroidism–everything seems to have an autoimmune connection).

      I want to keep my thyroid intact while helping it resume its normal activities.
      The M.D., my sister and I have been seeing, who is well versed in natural medicine,
      suggested that my Graves may be likened to a “firecracker”. My thyroid gland,
      she posits, has become so sluggish that the gland has become hyperthyroid
      to get “all systems going”.

      I apologize for being so long winded. I appreciate your reading my story.
      It has been an ordeal, as it has for so many of you and I just haven’t been
      able to find anyone who (besides my family) is willing to lend an ear and really
      understand what is happening.

      Thank you.


        Post count: 93172

        Welcome, Maria. I LOVE the way you write. I hope that you soon

        capture that elusive “normal” state and stay there! I was diagnosed just a couple of months before you. My doctor was helpful, but not nearly as helpful as yours seems to be. Like you, I’m going the anti-thyroid route and hoping to save my thyroid. Best wishes in your endeavor!


          Post count: 93172

          Hi Maria, welcome to the BB. You WILL get support from people here so stick around. I went on Tapazole for two years about ten years ago. I chose this route rather than RAI at the time. I had eight wonderful years remission. I became hyper again a couple of years ago and at that time I went with RAI. A year after that I started to get eye problems. BUT I don’t regret my decision to try Tapazole the first time and have those eight years. I actually forgot I had experienced hyper thyroid during those years and was very surprised when it returned.

          Best wishes to you and keep smiling! SAS

            Post count: 93172

            What is the best way to utilize this Bulletin Board. It appears
            to have excellent information, but I’m having a hard time following
            the posts. When someone asks a question, I can’t seem to find the
            answer. I am 32 and was diagnosed with GD six months ago. Up until
            now I have been resistant to any of my treatment options. My endocron
            has said “times up” and I need to make a decision. I’m very anxious
            about this but realize that if there is any chance of having more
            children (we have 2, ages 7 & 5) a decision needs to be made.

            If anyone has any suggestions to offer, personal experiences, etc.,
            I’d greatly appreciate it!


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