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  • Anonymous
      Post count: 93172

      Karen – Oh my! I’m newly diagnosed, so haven’t even seen my ENdo yet, and cant offer any real advice…but your story about this endo would say to me that you need to see someone else! If for no other reason, than this person’s bed side manner!!! Good luck! Danamichele

      Anonymous
        Post count: 93172

        Hi KarenM . My opinion only but get another endo if you feel you should. My thyroid was quite enlarged and I saw it, and others were kind not to mention it. As for your eyes, see an opthalmologist if you are concerned. Dont jump to conclusions by what one person said. I hope you research well and the Moderators here are absolutely wonderful and will direct you in the right direction on collecting information. Dont be scared to ask anything. Knowledge is power.

        Hope you the best and welcome.
        Kim

        Anonymous
          Post count: 93172

          Karen,

          See the thread on second opinions. Then find a new endo that will talk with you and answer your questions.

          One of the major symptoms for GD is rapid weight loss. So it may be your diet and it may be graves’ or a combination of both.

          RAI is one of three treatment options open to you. The other two are antithyroid drugs and thyroidectomy.

          Most people gain some weight back after RAI or thyroidectomy. Is it the bodys way of evening out the fluctuations. It mostly depends on you if you go higher. Now there are also a percentage that gain weight while hyper and they have a harder time losing the weight after RAI or thyroidectomy.

          Hair falling out? It does thin for many folks while hyper and hypo. So you may see some thining, but it is due to hormone levels not the RAI. We receive between 8 and 18 milicuries of RAI and that has no effect on hair loss. Thyroid cancer patients get 300 to 400 milicuries. THAT may cause hair loss.

          Thyroid Eye Disease. TED can cause blindness in extreme cases. Steroids to drop the swelling is a good practice. So is a good base line eye exam by an eye surgeon to see if there is any involvement to the optic nerve. That exam can be the basis that all others are compared to.

          Did your doctor give you any treatment options? If not see the thread on second opinions. I have gotten second and even third opinions in some cases.

          We are only a click away.

          Jake George
          NGDF Facilitaor
          Co-author “Graves’ Disease In Our Own Words”

          Anonymous
            Post count: 93172

            A couple of days ago my new Endo confirmed the diagnosis of Grave’s Disease. I am troubled, though, by some of the things he told me:

            – that all my recent weight loss was due to GD
            – that I would gain all the weight back, plus more, after RAI treatment
            – that my eyes were protruding a great deal and I may lose sight due to pressure on my optic nerve
            – that my goiter was huge and that others would notice.
            – that I would probably lose most of my hair after RAI

            Some background: For the last year, I have been following a ultra lowfat, high fibre diet, one that I’ve followed in the past and lost a great deal of weight (more than 50 pounds). Why would this time be different and all the weight loss would be due to GD?

            I’ve asked people if they think my eyes are protruding and they don’t think so.

            I’ve asked people, including my GP, if my neck is unshapely or looks fatter, and all have said no.

            I can live with “he’s a doctor, so he notices it more, I guess” But did your hair fall out? Did you gain more than 50 pounds?

            Also, why would I need to get completely naked to be examined by an Endo?

            Anonymous
              Post count: 93172

              He did give me the two options of meds or RAI, but said that the meds would have only a 5% success rate and that I’d probably die from an infection in just a few years if I took that route.

              So I’m scheduled for my uptake exam in a couple of weeks.

              Which leads me to anoher question – I normally fly almost weekly but I’m guessing that I can’t do that right after the RAI…I’ve read about the 3-5 days without being around people, but how long will I have to wait until I don’t have problems at airports?

              Anonymous
                Post count: 93172

                I am going to ask about a second opinon…but I’m very certain that I have Graves – I fit all the symptoms and my blood tests are right up (or down) where they would be with Grave’s.

                My real concern is where to have the RAI done. I’m normally one of those people who is willing to pay for the best treatment and I’d think I’d want the best place to kill off part of my body…or is this more like getting an oil change in a car? Sure doesn’t sound like it.

                Anonymous
                  Post count: 93172

                  Wow, you had one serious fellow for a doctor.

                  Remission rates are in the high 20s to low 30s. However lasting remissions are in the range the doctor told you. A remission may last months to years to decades, but most will go hyper again and need one of the other two treatments, being RAI or thyroidectomy.

                  There is a danger of white blood cell damage due to the antithyroid drugs (ATDs) but that is very remote and you would notice that you were sick. It does not happen overnight and you should report any infections of illness to your doctor so they can do a blood test to check your white cell count.

                  RAI is simple. Take a pill or drink a liquid and it will start to work to kill off your thyroid. It is not like changing the oil in a car. It is a calculated dose based on your weight, thyroid uptake results and other medical facts about you. You will set off alarms at the airports, city dumps and some stores with your RAI.

                  The thyroid will die off over a period of a few months to a few years. During that time you will need to be monitered to see if you need your medications changed.

                  With thyroidectomy you will not set off any alarms, will have a scar that will be bearly visible after a time and you will go on replacement hormone right away with little change to the dose once you are stabilized.

                  When you get your second opinion look for an endocrinologist that is a thyroid specialist. Go to the resources link at the top of the page and clikc on links. We have a link there to the American Thyroid Association. You can put in your state or zip code and it will tell you who is near where you live.

                  We are only a click away.

                  Jake George
                  On-line Facilitator
                  co-author “Graves’ Disease In Our Own Words”

                  Anonymous
                    Post count: 93172

                    Thanks for all the advice.

                    What kind of stores will have Radiation detectors?

                    Also, today I took the pill for the Uptake test and tomorrow I’m having the scan as well. The nuclear clinic where I’m having this done doesn’t seem to have a lot of information about effects and going back to work.

                    The technician did tell me today that tomorrow’s scan will us more radiation and I’d have to avoid people, but she had no recommendations for how or how long.

                    Can you share any information about what others have been told?

                    Anonymous
                      Post count: 93172

                      Hi KarenM,

                      I don’t think any stores will have radiation detectors. The only place you should encounter these are in airports.

                      The pill for the uptake test is a different isotope than the one used for RAI (though it’s still referred to as radioiodine, I believe), so you don’t have to worry about the same restrictions as an RAI patient.

                      I’m not sure why the scan would do anything “extra” to you, as it only scans for the radiation that’s already within you. If I were you I’d ask for clarification on that point. It’s possible that there are some small precautions recommended at that clinic. I received no instructions on any precautions when I had my scan/uptake done. I had two done, and I was never given precautions. That doesn’t mean the information you received was “wrong,” it just means that there are differing opinions in the medical community about this. You’ll find the same is true after RAI ~ different clinics will recommend different levels of precaution.

                      I hope that helps a little!

                      ~Ski
                      NGDF Assistant Online Facilitator

                      Anonymous
                        Post count: 93172

                        Hi, KarenM:

                        I don’t think there are any stores that have radiation detectors. Some folks work around radiation, and must wear badges which are essentially radiation detectors–to make sure that there are no leaks which could risk their health. If someone works in that type of environment, RAI would show up on those badges. And it is possible that courthouses, airports and other places with Homeland Security issues would have a radiation detector onhand. The bottom line is that I did not set off any alarms anywhere, but some few folks have. If you are planning air travel within a few weeks of RAI, it might be a good idea to get a letter from your doctor, just in case. But I would not worry about it, otherwise.

                        The form of radioactive iodine that is used for the uptake and scan (I123) has an extremely short life span — 13.5 “hours”. We are, typically, not given any precautions with this test form of radioactive iodine. The amount we are given is small, and it decays rapidly, doing no harm to our thyroids. So, you are not risking anyone else’s thyroid health by having this test (you are not even risking your own thyroid health). Try to keep in mind that there are a variety of medical tests that call for tiny amounts of a radioactive substance to be put into a body (barium Xrays, for example, or thalium cardiac stress tests) and we are not kept away from other people for this type of test. Similarly, we are not asked to avoid others with the thyroid uptake and scan, under normal circumstances.

                        I hope this helps,
                        Bobbi — NGDF Online Faciliator

                        Anonymous
                          Post count: 93172

                          So here is the update I was at my Endo and they are treating me for the Peripheral Double vision with steroids. They are making me feel a bit sick and disorientated but otherwise fine. I have to go back every week for monitoring cause they have put me on the highest dose of the steroid they can.
                          PTU worked for me. My levels are stable and he even told me it would be a good time to think about conceiving. Which I am not intending to do but it is encouraging.

                          I was a bit shocked that he said that “We shall take you off it gradually and then see how you go. If it doesn’t work then we will do RAI”
                          I was a bit miffed because he just assumed that I wanted RAI.
                          To be honest I am not too sure I like the idea of RAI at all and I had decided what my course of action. I hope to god he will give me the option when/if I get closer to that time.

                          Anonymous
                            Post count: 93172

                            Hi rosered,

                            I understand your frustration ~ sometimes it seems as if our doctors believe they get to make ALL of our decisions! It’s good that you know that’s not true.

                            In the U.S., doctors are very hesitant to leave people on PTU for a long period of time. The standard period is one to two years, at which point they take you off and see if your body has gone into a remission. There are a few good reasons not to rely on PTU forever. The risk of serious side effects goes up over time, and the risk of liver damage gets higher as we age. Also, if remission has been achieved, there’s no use in taking the PTU, so it’s good to see how your body is doing and limit the possibility for adverse effects.

                            The fact is that, if you have not achieved remission through this dose of PTU, most doctors will recommend that you make a second choice about handling your Graves’ Disease. There is an outside chance you can go to the other ATD (Tapazole), but I think the odds of having success at that are pretty slim. Other than ATDs, the choices you have for managing your Graves’ Disease are either RAI or surgery. Most doctors try to avoid surgery, but it is YOUR CHOICE and you are absolutely free to make that choice regardless of your doctor’s opinion. Well, you’re free to make that decision unless you’re a hemophiliac or have some other condition that would preclude surgery completely.

                            It’s not necessarily a sign that your doctor is overbearing ~ RAI is simply the most common treatment for Graves’ Disease and they might even think they’re being helpful by reminding you that, if this doesn’t work, other options exist.

                            I would recommend that you do ALL the research you can (and try to make sure you’re getting good info about the RAI ~ there are an awful lot of scare sites out there publishing lies), and make your decision only after taking everything into consideration. I know that your current choice is to continue with PTU. It’s a good thing you have achieved normal levels on your current dose, and there’s every possibility that you’ll be one of the lucky ones who achieve remission through PTU. Still, the time to make your next choice is not when the decision must be made immediately ~ the time to make your choice is while you do NOT have any deadlines, so you can relax and look into every possible nook & cranny of information. You’ll be more comfortable with the decision once you’ve researched everything.

                            The bottom line is that no treatment for Graves’ Disease is as dangerous as remaining hyperthyroid, so keep that in mind as well.

                            I do hope that helps you a little.

                            ~Ski
                            NGDF Assistant Online Facilitator

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