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  • Anonymous
      Post count: 93172

      Hello Everyone!

      I have two questions that I would really appreciate some feedback on:

      1. Have any of you heard anything about RAI actually stimulating the bulging of the eyes?
      2. Although I’m aware that damage to the vocal cords is a possibility with thyroid surgery, I’m wondering how great the risk really is.

      My daughter’s Endo normally recommends RAI, however, since my other daughter had Graves Disease and subsequent decompression surgery, he has suggested that we consider surgery in the event that the RAI actually does worsen the eye protrusion.

      Thanks for you help!

      Margaret

      Anonymous
        Post count: 93172

        Hi, I take it that one of your dau’s already had RAI and now you are
        looking at options for your other dau? Is the drug therapy not an
        option for some reason? or something you have already tried?
        I have read articles which say it is still controversial, or unresolved
        as to whether Rai might trigger more eye involvement in some people.
        My endo acknowledges that it is possible and not empirically proven either way
        but something to be cautious about. There was one lady on this bb who had written something about
        differences between total and subtotal thyroidectomy, with the suggestion that total was safer for
        eyes. You may be able to pick up that message, in November I believe, by the mention in the title.
        My older bro is in the process of finding out if his tyroid is subacute thyroidis or graves. I hope he doesn’t
        have it too, like me. I’m sorry both your dau’s have manifested.
        My mom had it, didn’t survive her surgery, this was back in the 60’s.
        I wonder if they got her levels down low enough. In discussing the dangers
        of surgery, you mentioned nicked vocal cords, that can happen. But if your dau
        had surgery she should go to a facility that does many of these surgeries, and same for the surgeon.
        Because of RAI, the surgery is not as common and not as many experienced doctors are available.
        so even if she had to travel. Now I realize it is a very sensitive thing that I have shared
        about my mother, considering your dau’s options, but as a mother myself,
        i am assuming that you wnat any insight that is true and helpful. I don’t know what the statistics are on
        surgeries, but I would want them, even though I suspect my mother’s death was rare and
        an anomaly. It certainly colors my treatment choices no matter how “rationale” I try to be about it.
        One of my mother-in-law’s neighbors has the nicked vocal cord, but otherwise adjusted well to
        synthroid and carried on her life. I notice that lots of the folks post RAI on this board,( who may represent the 10% w/probelms post treatment)
        don’t seem to do all that well. But, then is that the treatment or
        other unique complications which are latent? Your dau’s are fortunate to have you, asking questions and
        supporting. Best wishes to you all. I am sure the facilitators on this board will be responding to you. I am just learning how
        much there is to know about this disease and how much isn’t known.
        I have a very helpful doctor and I hope that your family does too.Jeannette

        Anonymous
          Post count: 93172

          I had a partial thryroidectomy 2 years ago with an experienced surgeon
          but
          I have damaged parathyroid glands and now have to take
          calcium supplement (Naturopathic Metagenics Cacitite 1000mg
          which worked better than Sandocol 1000mg)
          I get a hoarse voice after talking a lot but it gets better
          The scar is barely noticeable and the recovery after the op
          was good

          I chose surgery because I am hearing impaired (I use my eyes to
          lip read) the very scant information I could get in Australia seemed
          to imply that radiation may make the eyes worse. I have an aunty who
          had radiation and her eyes haven’t gone down a lot but she is nearly
          eighty!!

          I think what helps is when you have all your information and make your
          choice be committed to that choice and your recovery. The next big
          must is SUPPORT which I really missed but all these lovely people on the
          BB help each other.

          Hope this helps I tried to be brief!

          Kathleen.

          Anonymous
            Post count: 93172

            Margaret:

            I asked my endocrinologist about RAI/bulging eyes before deciding on treatment. She acknowledged that in a SMALL percentage of cases RAI appears to aggravate Graves eye disease, and that when patients arrive with eye problems already that she does NOT recommend RAI just to be on the safe side. It sounds like your daughter’s doctor is basing his comments on the family history as well.

            There are always risks with surgery. Given the location of the thyroid, it is possible for surgery to bring about damage to surrounding areas. How common that is, I don’t know. The major risk I read about, however, had to do with damage to the parathyroid glands, which sit at each of the four ends of the thyroid “butterfly” (not a medical term, but the way I envision the structure of the thyroid). The parathyroids have something to do with calcium production/absorption. Be sure to check with the doctor him/herself about the possibility of damage there, too.

            Bobbi

            Anonymous
              Post count: 93172

              Hi Margaret,

              Your endo sounds like a smart man. I was told I had a 2% chance my eyes
              would get worse after RAI and a 10% chance of vocal cord damage. The vocal
              cord percentage will be different for everybody due to how the individual’s
              thyroid is sized, the person’s size etc. I had the RAI and lost the gamble
              and had to have decompressions as well. I had a three wall decompression done
              in each eye 6 weeks apart. I don’t regret having done the RAI but I would have
              liked to have had more information to make the choice. Chances are I would
              have had the RAI even after I weighed the facts but it would have been nice
              to know. If the chance of loseing her voice is low she may want to consider
              surgery. I hoped this helped.

              Regards,
              Jake

              Anonymous
                Post count: 93172

                When I first had RAI, the doc said chances were better with RAI to not get eye problems, that was 6 years ago. Recently at new doc, he mumbled something about now they’re leaning towards thinking RAI may increase risks of eye problems. I had RAI and did not have eye problems then but 6 years later Im having them. This is supposedly rare to get eye problems that much after RAI–but the same thing happened to my Mom. My sister who took drugs, has not had any eye problems yet. Don’t know if it’s related, but it sure makes me think!Ask lots of questions. Don;’t settle for vague answers.Good Luck, KarenG

                Anonymous
                  Post count: 93172

                  Hi KarenG-I am new to this BB-just found it yesterday. I too had RAI six
                  years ago and am now experiencing eye stuff-one eye protrudes 25 and
                  the other 22 (they were 19 3 years ago). Am being referred for radiation
                  treatment to stop swelling. My thyroid levels are normal. They never
                  told me to expect anything else from this disease after RAI–although
                  I did go into early menopause within 2 years of RAI-and am now also
                  experiencing arthritis pain in my feet-numbness in fingers, etc. I
                  know it is all related even though they kind of act like I am crazy. I
                  was really angry, depressed and scared when I first found out but am
                  now more resigned. Good luck, email me if you want. ToadR@aol.com.
                  Thanks, Denny

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