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  • Anonymous
      Post count: 93172

              I’ve been crunching the survey numbers largely because I want to understand more about Graves’. Yesterday, I was doing some routine analysis when I found myself saying, “Ah…”. It seems that 73% of the people who have been taking ATD therapy (most of whom are doing very well on it, by the way) reported that they had never been hypothyroid! “Ahhhh…” 28% of people who have had RAI once have not been hypothyroid either. That explains a lot to me about why it is hard for some people with Graves’ to understand some of the symptoms reported by others in the BB group.
              More people than I realized have taken the UP part of the rollercoaster ride, but not the DOWN part! They have suffered, to be sure, but have never experienced the muscle spasms of the deep valleys, when turning over in bed results in pain and the need to stand up in the middle of the night; the times that is was impossible to comb hair or take a shower without spasms; the “brain paralysis” from very low thyroid levels; the feelings of doom when bones are broken and you look so sick and bloated that people don’t want to come near you.
              When I was hyper I had extreme chest pains, palpitations, bulging eye, felt hot all the time, etc., etc., but basically I felt invincible. When I was hypo I went out and bought a cotton nightgown to be cremated in and thought about how my children would be taken care of, so close did death seem.
              It is hard to imagine what other people are going through at various stages of this disease. I haven’t experienced the higher end of the eye symptoms, and cannot really know what these people are going through. I hope that we can all work together to support one another. There are things each of us have experienced and other things we haven’t.

        Post count: 93172

        Somebody who understands. As one who ended up with a TSH 65 and T4 0. I can assure you I am scared to death at the thought of being hypo again. I am a teacher and I lost the ability to read. My short term memory disappeared so when I got to the end of the sentence, I could not remember the beginning. It makes one wonder about the people who have a reading problem doesn’t it. I have also been horified at the difference the brain chemistry makes to one’s personality. No wonder many people with thyroid problems are considered in need of psychiatric care. My GP doesn’t seem to understand the need I have to stay slightly high, but then he did not suffer ultra-low!!

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