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  • Anonymous
      Post count: 93172

      Amazing Colleen, It always distresses me a bit when new folks come on this board and they are just diagnosed
      and about all lined up for or already had treatment. Then when they ask
      what are anti-thyroid drugs or… well it realy shoots the “informed consent” concept all to pieces. I think it is a real good idea to take a trusted loved one to those early appointments.
      Not only might they remember what you may forget, be it to ask or what you have heard, but it tells the doctor that
      there is someone else listening, a witness. When the same info has to be explained to two people it can sometimes really enhance the process.

      Anonymous
        Post count: 93172

        The dosage of RAI given to patients for treatment of hyperthyroidism is based on

        1)the size of the gland — not all of us have goiters of any significance, but the presence of a goiter will change the amount of RAI given — to the higher side.

        2)the percentage of uptake — i.e. the hyperactivity measured in the thyroid prior to the treatment. Apparently the higher the uptake the lower the amount of RAI needed

        3)whether or not the doctor is going for ablation or euthyroid.

        As an example, I had no goiter visible and my thyroid was reported to be a normal size from the uptake. I had an uptake of 65%. My doctor was going for ablation (with my permission and understanding). I received 8mc of RAI.

        Ablation, BTW, does not necessarily mean there will be absolutely no thyroid tissue left after RAI. We often assume that it does, and this is what my doctor thought was preferable, but there is a bit of a guessing game going on with the dosages — an educated guessing game, but a guessing game nonetheless. How one individual’s thyroid will respond to a dose may be different from how another’s does. My doctor wanted my thyroid GONE (so did I), and I still have functioning thyroid tissue.

        As far as the thyroid having much to do with calcium levels/calcium use in the body, my understanding was that this was due to the PARAthyroids and not the thyroid. The thyroid does produce a hormone called calcitonin, but according to my endocrinology textbook calcitonin is the only hormone produced in the body where there is NO disease problem associated with either way too much or way too little of it. I cannot put my hands on that text right now, but I’ll look for the pertinent information if anybody wants it.

        All of the information I’ve read says that there were LONG-TERM studies done, early on in the use of RAI treatment, to study the effects of this treatment, and to LOOK for negative side effects. They did not find any. This does not mean that RAI is “benign” — any radiation exposure adds to our overall, life-long risk of developing a problem associated with it, because the effects of radiation on the body are cumulative. Getting routine dental x-rays even adds to the life-long risk. What it does mean, however, is that the amount of radiation we receive in RAI treatment is low enough not to cause any predictable negative side effects later on.

        Anonymous
          Post count: 93172

          Well, people are still asking about the safety of RAI daily. In reply, the story about “long term” research done “many years ago” is repeated daily, but to borrow some modern phraseology, SHOW ME THE STUDIES!

          I have an inquiring mind and an objective attitude, and if someone would just reference these studies (throw in the one that shows that 90% of Graves’ patients are fine after treatment), I’d gladly get hold of them, read them, and evaluate them. Assuming that scientific research was done, one would think that these “studies” have been replicated several times over the years as well. If it was good research, it should be in the public domain and readily available.

          Here’s an example of a poor anecdotal study: The 20 endocrinologists in a certain city are sent a questionnaire by their professional society asking for their rate of cure of thyroid patients with varying conditions. Each of these physicians replies that they cure “90%” of their patients. Meanwhile, they have all been seeing the same pool of 3,000 patients, each of whom goes from doctor to doctor trying to find the one who will finally help them keep their symptoms under control. None of the doctors keeps track of patients’ progress after they leave their offices.

          Anonymous
            Post count: 93172

            Not to mentioned those patients who just quite going or complaing because they have lost hope that they will ever feel better. My doctor through out a figure of 5 – 15% of people have difficult stabilizing and those are one who are receiving treatment to regulate their thyroid, not those who have had RAI or surgery. I’ve tried to contact my doctor and get my RAI dose. But get this, I waited for approximately 1 hour prior to my treatment because the shipper sent them a dose larger than what was prescribed for me. The number 10 sticks in my mind of that dosage and after waiting, the doctor said “give it to her, it’s not too large a dose.” So, they did.

            Anonymous
              Post count: 93172

              HI
              I”M A 28YR. OLD MALE,I WENT THROUGH THE RAI TREATMENT
              LAST NOV.I HAD DISCUSSED WITH MY DOC ABOUT THE RAI DOSAGE,
              I WAS UNDER THE IMPRESSION HE WAS TO GIVE ME SUCH A SMALL
              DOSE THAT I COULD HAVE A CHANCE AT KEEPING MY TYROID AND
              BE NORMAL.THE DOSE I WAS GIVEN WAS TO MUCH… WHEN I SEEN
              MY DOC (ENDO) HE SAID GOOD IT”S ALL GONE (MY TYROID) I WAS SO MAD THAT I DID NOT HAVE A THYROID AND THAT I WAS GOING
              TO HAVE TO TAKE A HORMONE PILL FOR REST OF MY LIFE(1 A DAY)
              WELL IT”S BEEN 9 MONTHS,I”VE BEEN THROUGH 4 DOSES 112,125,
              137,AND NOW 150MCG.OF LEVOTHYROXINE (6-8WKS EA.DOSE)MY WIEGHT IS BACK,EATING BETTER,SLEEPING A LITTLE BETTER,BUT
              STILL FILL LIFELESS,BURNT OUT AND STILL TRYING TO GET BACK TO NORMAL.DOC SAID MY LEVELS ARE GOOD AND ASKED ME TO SEE
              MY PRIMARY DOC TO SEE IF THERE IS SOMETHING ELSE WRONG
              (YEA RIGHT)IT”S A LONG ROAD I HOPE YOUR ROAD IS SHORTER..

              P.S.
              PLEASE RESPOND
              lucghi

              Anonymous
                Post count: 93172

                What an interesting thought, Redhen, probably many specialist assume their patients are well
                and happy because they no longer hear from them. I think that it is a form of respect to objectively and honest give
                care providers feedback, annotate one’s reasons for choice and change, and update from time to time.
                It can be kind of fun…as in remember the relative of mine on whom you gave up in 19//, well, her new doctor
                has discourgaged her from too much mountain climbing..but she is still with us.
                I also think it is important for our well being. So often we choose just to feel like bad children because we disagreed with the expert.

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