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  • Anonymous
      Post count: 93172

      Hello again. Thanks to all who were so kind in answering my last post.

      Finally saw the endo. He says I have a multinodular goiter and that is
      what is causing me to be hyper. Since I’ve been on a beta blocker for so
      long he feels that it masked my hyper symptoms and when I could not
      swallow in Nov. so could not take the pills the hyper symptoms really
      showed up!

      Now my dilemma. Endo says since I got such a rash taking thyroid replace-
      ment medication and probably other meds for this would also cause a rash,
      that the other two options for me would be RAI or surgery. He says I
      have so many nodules that doing a biopsy of so many is impossible so he
      would not recommend even trying that. Also, most likely there is no cancer
      as multinodular goiter isn’t usually cancerous, although he could never
      be 100% certain of this.

      Which is better, the RAI or surgery? So far a poll of my family is all 4
      in favor of surgery rather than the radiation. My kids thought it was
      yucky to say the least and my husband would like to see me get relief sooner
      than later and thinks the RAI would just prolong the misery. We have read
      about and discussed the complications of surgery. Of course, this is really
      my decision and I’m just looking for input from everyone in order to make
      an informed decision. Any insight would be greatly appreciated. Thanks.

      Aurelie from the North

      Anonymous
        Post count: 93172

        I’m glad you got in to see the endo, Aurelie. I’m not sure how much help any of us can be on with you making your decision. Sometimes it just boils down to you feeling more comfortable with one form of treatment over the other. (And some of us may have made the OTHER choice, for personal reasons that you might not share.) Your husband may be right about the “getting it over with” part. RAI works somewhat slower, and the timing can vary a lot from one individual to the next. But, it also doesn’t involve some of the risks that surgery brings. What does your doctor say, though? Sometimes, depending upon the level of hyperness, the amount of nodules, etc., the doctor can give you a better “guess” than we can about which treatment is most likely to bring you the results you want, with the least potential problems. You may wind up just going with your instincts, which is perfectly OK, too, provided you’ve listened carefully and as objectively as possible to all the medical input.

        I wish you luck. I’ve had RAI, so if you have specific questions about that procedure, you can email me, if you want. Just put “Graves” somewhere in your subject title so that I’ll be sure to open your mail.

        Wishing you good luck, and good health,

        Bobbi — Bobbi1436@AOL.com

        Anonymous
          Post count: 93172

          Aurelie,

          Others have asked for input on this same concern, RAI or surgery, so you might want to look through old posts on this subject.

          This is my first post concerning this one. For me, I opted for the RAI because by the time I finally went to the doctor my heart was racing so bad and I had lost so much weight that I was scared enough to hurry up and do something.

          Picking the right treatment is such a personal decission from what I have read on this subject. However, the surgery idea concerns me only because I would be afraid that they would mess up the parathyroid and then there would be more problems. Both of my children have a rare thyroid condition (unrelated to Graves’ Disease) whereby they have to have not only their thyroid levels monitored but their parathyroid levels.

          I did not even find this BB until a two and a half years after I had my RAI and I had thought everything had been going just fine for me up til then.

          You have to be comfortable with the choice you make. Good Luck.

          Michele B.

          Anonymous
            Post count: 93172

            Aurelie,

            A friend of mine was recently diagnosed with multinodular goiter.
            Her doc originally thought she had GD until they did an uptake
            scan. Anyway, to reiterate what others have posted, the decision
            between RAI or surgery is a completely personal decision. I
            can tell you that my friend is opting for the surgery though. Also,
            in some reading I’ve done to try to learn more about TMG, I
            did run across information in one medical text that said
            that a complete thyroidectomy is the preferred way to go (by
            most docs) simply because leaving any part of the thyroid
            could result in a reoccurrence of the “hot” nodules sometime in
            the future.

            Wishing you all the best,
            Sheila H.

            Anonymous
              Post count: 93172

              Hello to all, and thanks again for the wealth of information. I’m still trying to read all the back posts, and found it so interesting to start at the very beginning and watch how quickly the number of posts grew from that first month. If it weren’t for all of you being so dang knowledgeable, I might not ever have insisted on getting my lab results so I can begin to understand what’s going on. I asked my doctor the other day to rate my Grave’s involvement from 1 to 10 and he said about a 3, so that was indeed good news.

              One post I read said that there is a difference between eye problems caused by Graves, and GO. Does anyone else agree, and what are the differences? My eyelids are extremely puffy, and my eyes are red and irritated most of the time with slight protrusion. My doc thinks this will go away for the most part when my thyroid gets under control, but he said it might take a year or two. Since he regards this as a cosmetic problem, he’s definitely not too concerned about it, but at least he’s honest with me. It is of great concern to me as our eyes are so much a part of how we communicate with other people, and my job involves me with customers.

              I’m leaving Friday to work a trade show for 6 days which should be very interesting considering my lack of stamina since onset of Graves. I will miss reading the BB – I’m addicted and come here at least twice a day. Good luck to everyone, and see you next week when I return!.

              Elaine

              Anonymous
                Post count: 93172

                Hello All, I sure enjoy reading this BB. It is very informative from people who have been going through this disease.
                I have a question, I have read the pros and cons of surgery and the pros and cons of RAI, in postings, papers, books -you name it. What I would like to know from those who have had surgery, which don’t seem to be very many, can you tell me why you had surgery and how you are doing? I have seen many comments about RAI. I have the eye disease, and know in small instances it could progress after RAI, what about the surgery? I go back to my Endo & Optho’s next week, and we will discuss the two options and their opinions. They both say I need to decide, so I am asking for input.
                Also, I have to get a FreeT4 bloodwork at my local lab tomorrow to take back with me, as they are 85 miles away. What will the FreeT4 show them? I still have hand tremors, even on the Tapazole & Inderal, but it is a little better than it was. I have been on the medicine for 6 weeks.
                Sorry for the long post. I thank you in advance for all your help. I wish I could go to the convention, but that is not possible at this time. Would love meeting you all and enjoying all the sessions. It would be so informative and supportive.
                Ellie

                Anonymous
                  Post count: 93172

                  Hi, I too was making the same decision as you, RAI or Surgery and I have elected surgery. I am young, 37 and feel to voluntary radiate my body doesn’t make sense. I would like to keep the “radiation capacity” of my body open in case I involuntary need it some day if I ever need radiation. My surgeon and Endo both agree and want me to do whatever I am comfortable with. (another Endo I saw Monday disagrees and only sends his Graves patients for RAI) so there are definitely two schools of thought. I believe if you have an expereinced, skilled surgeon your risks are minimal and the negative aspects of a scar and “risks” of surgery far outweigh the aspects of RAI. I know you probably haven’t read much agreeing with me, however, this is my opinion! Good Luck!

                  Anonymous
                    Post count: 93172

                    I am scheduled for surgery July 8. My endo has recommended surgery due to the fact that I want more children (would have to wait 6-12 months after RAI to get pregnant) and have slight protrusion in the right eye (which can supposedly become worse after RAI). It is still an individual decision. The surgeon doing mine does about 10 thyroid surgeries a month and seems to think mine will be a clear cut case. I have anguished over which way to go, even continue taking PTU (have been on it since 11/97) up to a year and see if I could go into remission. Since the ol’ biological clock is ticking away, I really believe surgery will be the most effective choice of treatment for me. Good luck in your decision. I know it’s a tough one!

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