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  • Anonymous
      Post count: 93172

      A Dad,

      A Very Thoughtful and Considerate Dad, you are! It’s so nice to see you taking a real interest in this whole process for your daughter.

      I think a very large part of our recovery is based on how comfortable we are with our own treatment, so my first reaction would be to say, fi you feel your daughter is fully informed and making her decision based on that, go with what she wants.

      The relationship between RAI and the eye disease is not completely concrete — the supposed statistics say that the RAI “can” aggravate existing eye disease symptoms “temporarily,” but if you read this board very much you might find a very loose interpretation of temporary. It appears that, in most cases, a course of steroids before, during and after the RAI “can” reduce the impact to the eye disease, but of course steroids come with their own risks.

      If you’re going to do the surgery, take some time to research the surgeons that are available to you, and pick the one who has the most experience with this particular surgery. This way you’ll have the best chances of the perfect outcome.

      In either case, remember that neither the RAI or surgery cure the entire problem immediately! The fine tuning of a thyroid replacement dose can take a long time, for many reasons, and patience is the key. The most important thing for now is that the hyper condition be corrected. Then get ready for some ups & downs until the replacement dose is comfortable. Make sure that your daughter is guided through this process by a sensitive doctor — too many are willing to say “the numbers are okay, it must just be her adolescence making her feel bad.” If she feels abnormal, keep on it until she feels right. It will make all the difference to the whole family.

      Good luck! And thanks for taking such good care of your little girl.

      -Ski

      Anonymous
        Post count: 93172

        I had thyroidectomy in April and would be glad to answer any questions you might have. Just click on my name and email your questions.

        Anonymous
          Post count: 93172

          I am considering surgery instead of RAI treatment for my Graves Disease. I don’t see many postings from people who have had surgery. I see many people who have problems (TED) after RAI treatment. Does RAI increase your chance of developing TED if you have no signs of it before hand? Am I crazy for considering surgery as a permanent fix? I have been e-mailing one women who had the surgery but would like to hear from others.

          Ann

          Anonymous
            Post count: 93172

            From what I can tell sitting, watching postings, talking with doctors, surgery is often a very rare consideration for patients, unless they have thyroid cancer, in which case both surgery AND RAI are used. The reason seems to be that surgery can create more in the way of known risks to the patients than RAI does. Talk with your doctor about these risks, and weigh them carefully.

            As to the relationship between RAI and the eye disease, there are a lot of conflicting studies out there. Studies have shown there is little or no relationship between the treatment and TED, and other studies have shown that there is a slight relationship. A study two or three years ago that seems to be the one doctors are using as a guide at the moment, showed that there was a TEMPORARY worsening of patients’ eye condition in approximately 15% of RAI patients. This same study also showed that if the patient was given a concurrent course of prednisone (i.e. a steroid), that there was NO worsening, temporary or otherwise. Prednisone comes with its own adverse risks, and since only 15% of the patient population had any worsening of their eyes after RAI, doctors may not routinely prescribe the steroids with the RAI. My own endo does IF the patient already exhibits evidence of eye disease, but does not (routinely) if there is no evidence of eye disease. The primary distinction seems to be that RAI does not cause the eye disease — the causes are something else, entirely — but that it MAY (the newest theory) stimulate the antibodies, temporarily, thus making it worsen for a period of time.

            Anyway, the thing you have to do is discuss with your doctor, as objectively as possibly, the known risks vs. benefits of any of the treatments, for YOU, as you decide which risks you are comfortable taking. Each of us has a slightly different set of medical circumstances that must be taken into account, and your doctor is the only person who can give you the specifics of your own medical condition that might make one course of treatment more optimal than another. And this might be different from what another person is advised, even by the same doctor.

            Wishing you good luck with your decision,
            Bobbi — NGDF Asst. Online Facilitator

            Anonymous
              Post count: 93172

              I haven’t had surgery or RAI but I do have thyroid eye disease. Because of what I’ve read on this BB and the countless people who have had trouble with their eyes after RAI I have opted NOT to have RAI. I take antithyroid meds and will continue to do (there’s a good chance I’m going into remission after 4 years of meds), otherwise if no other choice only then will I have surgery. But never ever RAI because of the worsening of the eye disease afterwards. Good luck, Mona

              Anonymous
                Post count: 93172

                I can only provide you with my own personal experience with RAI, which was done over 4 weeks ago now. I’m 45 yrs old, and no one will react to the RAI exactly the same. If I had it to do over again, I would have seriously researched the surgery options instead. I just got out of the hospital yesterday (spent 3 days there) due to how whacked out my thyroid has been since the RAI…I was MUCH worse after having it done!! I know this is temporary, but in the mean time, until my levels start to drop, they’ve gone sky high and I’ve been totally miserable. If your daughter AND the dr. are comfortable with surgery, I’d sure consider it as an option anyhow. Perhaps someone who has gone through the surgery can tell you of their experience with it…as I said, I can only speak for myself.

                If she is doing well on the meds, is it an option to leave her on them instead of the surgery or the RAI?

                Kathleen

                Anonymous
                  Post count: 93172

                  Kathleen,
                  What symptoms were you having…to be ” whacked out ” ? I am a little more than two weeks post RAI, and so far, so good. As a matter of fact, my Inderal has been reduced from 20 mg three times a day, to just twice a day. I feel very well. Everyone is remarking about how rested and calm I am!!
                  My endo did not recommend surgery…said there are ” too many complications” : thyroid storm, bleeding, damage to the parathyroids, damage to the esophagus/trachea/vocal cords, etc. He said that by giving the ” non-invasive ” therapy a try FIRST, we could avoid most problems.( We can always do the surgery if the RAI doesn’t work ). I am happy with my choice, I do not relish the idea of anyone with a scalpel near my throat!!!! I am so sorry for your trouble and hope you feel better, soon. Lin

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