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  • snelsen
      Post count: 1909

      Up to you. But I hope your choice is not to remain hyperthyroid. Maybe you will choose surgery (I did, and many others did) Maybe you will choose ATD’s. Kimberly and others did. YOu have chosen not to do RAI. That is fine.
      I wish you the very best in your decisions.

      I think some of your fears and apprehensions are based on poor information. But it is your information. You have made a choice not to do RAI. So have others made that choice. Nice that we have three treatment options.
      I suggest you explore one of the other two with your doctor, make a decision, and move on with your life. That is pretty much the goal of all of us. It is very hard to be hyper, it is hard in multiple ways. I sure hope you feel better soon with whatever you decide.

      If it is important for you to know about the standards of care in the French medical system, and if you would like to know the standard of care in France for Graves Disease, I suggest you explore it in an academic approach, so you receive valid information.

      Shirley

      VanIsleGal
        Post count: 66

        Upon talking to family in Morocco, we discussed about 5 people who had the surgery for Graves’ disease there, one of them permanently losing her voice. None of these people were given another treatment option. This is not an academic study, but I do know Morocco medicine stems from the European model of medicine.

        I based my decision on medical journal articles, studies, and personal stories. I have talked to people who have had success with RAI and many people struggling to regain health years after RAI. I have almost completed my PhD and I work at a university. I have access to journals and other scholarly articles with my university account. This is what I was reading. I don’t really know if these articles are available to the general public. I think most require a university account? I have saved some of these articles to discuss with my doctor and tell him why I didn’t feel comfortable with RAI.

        How many people die or suffer from myexdema coma after RAI or as a result of being hypo as opposed to thyroid storm with Graves’ Disease? Of course I will not chose to stay hyper. My goal is long-term drug therapy, but my endocrinologist will probably call me tomorrow and I will learn more.

        xoxo

        snelsen
          Post count: 1909

          Hi.
          Sounds good. You are making your choice based on your own personal choice plus research and consultation with your endocrinologist. There are a few people who have ben on ATD’s long term. Kimberly has been on them for several years, I am not sure how long now. I am sure she will be informed on any current research on this topic. I imagine there will not be long term studies, though, for taking ATDs’ long term is pretty current thinking. And the precautions of using them for just a short period of time only, for the purpose of getting to a safer euthyroid place for the purpose of choosing either RAI or a thyroidectomy, have been replaced by some endocrinologist as a valid option of treatment. I am not sure if “long term” use has been defined, but given the nature of Graves’, I imagine it means lifetime use, just as it is with thyroid hormone for RAI and surgery. As you probably already know, labs, and liver function studies, especially LFTs’ at the beginning, are necessary.

          There is a possibility of experiencing a hyperthyroid state again with ATDs’.
          If this happens, you will again be faced with the choice of RAI or surgery. But there is no point in thinking about that now. I hope your endocrinologist agrees to work with you on this. Not all endocrinologists do consider this a third long term option, for the historical treatment in the past is that the purpose of ATDs’ was to get us away from the dangerous hyperthyroid state so we could have a permanent treatment.
          Good luck on beginning the ATD’s.
          Shirley

          beach45
            Post count: 178

            Hello VanlsleGal,

            I have been following this thread and wow a lot of information.

            I hear what you are saying; I researched in detail as many medical journals as I could and talking with many different doctors about my options for my Graves which symptoms started back in May 2010; being on ATD, Methimazole, for 20 months bought me some time to research yet I personally was miserable on them and no doctor (4 endos) seemed to be able to get me regulated; so I opted for RAI.

            I was also very fearful and anxious and had many of the same concerns as you as I have two cats and a husband; I did not travel afterwards yet I know a young lady who did and all worked out fine; in fact she was one of those who did very well post RAI and just went on Synthroid a few months ago and no problems!

            I too have spoken to many who had RAI success, hear of some here on GDATF and many who probably do not post anymore because there is no need anymore for them to be on such forums as they have gotten on with their lives. Two people who I know personally who had it many years ago and no cancers, no other health problems, take their Synthroid and do not even think about it. Actually thought I was obsessing and overanalyzing over it too much!

            If I had been able to maintain my thyroid levels on a very small dosage of Methimazole, ATD, I would never have taken RAI; I am against medications and treatments of such yet my hyperactivity due to Graves was really beyond control and I had no choice unless I wanted to gravely affect my heart and bones in time;I chose to stay on ATDs as long as I could; I know of two people who had heart attacks due to not knowing they had Graves and it was found out later; yet of course not to scare as if a person like yourself is being treated and monitored by their physician, this should not be of concern.

            I see it as a mixed bag; and yes my current endocrinologist admitted I am trading one problem for another; yes some had no problems post RAI as I listen to here; I have been one of those as up to now have had a very difficult journey and now struggling with thyroid hormone (Synthroid) 4 months post RAI which may not be enough for me right now and the weight gain is terrible and the bad mood swings. I know of some no problems. We are all individuals and have had different degrees of Graves to start, different ages (I am 53), how long was the person undiagnosed prior, possibly how many millicuries you take as I had 15 mCi and know some with much less who did much better than I, and even some who had more did better than I so far. Yes you are correct about myexdema coma as I know someone who started going that way and they were being monitored by a good physician; My endocrinologist and I just spoke of that my last visit; I had a horrible time two weeks ago and went to the ER 15 weeks post RAI and I told my physician to do a blood test earlier and yet he refused. Yet statistics I read show that condition does not occur very often yet people have had more issues with thyroid storm and sometimes people who did not know they had Graves (I know of 2 people) who had a storm and it took doctors over a week to figure out it was Graves disease!

            My opinion only, you have to do what is best for you; like I said I had many of the same concerns you have now and I was basically backed up against a wall and I feel in my area I do not have the best of medical care as to me 1/2 the battle is also working with a very good physician; of course with whatever treatment we have to watch diet and exercise which myself I have done this diligently for over 28 months now. I did search out for a “natural” remedy and there was none and one endocrinologist said there is nothing out there that actually stops the antibodies from attacking the thyroid or else then they would not have to take out or kill the thyroid to start.

            I do know of some people who had TT and did very well and happy they chose that. I am wondering if I made a mistake myself not taking that route. Yet I had a very bad time after another surgery back in 2009. Some have already done very well with TT, back working and moved on. Same with RAI.

            So if you can stay on long term drug therapy, from my own experiences if that had been an option for me, I would have done that; yet mine was pretty far gone and I basically wasted 20 months on Methimazole as there was no signs of maintaining or remission for me; there are people out there on it for years or doctors willing to work with them on that; hopefully you have that good physician to work with.

            I looked at this with the radioactive iodine thing, that life is full of risks and weighed the pros and cons which were in relation to my experiences; not anyone else; just mine. I had a husband drop dead eight years ago at 56; I have no guarantees of perfection in my life yet I can live my life to the fullest and not in fear, and I also feel in time with the right medical practioner this too shall pass and things will get better; maybe different yet better.

            For me I could not stay hyperthyroid as they told me it very well could start taking it’s toll on my heart. That is just my experience though. You as all of us has to do what is best for you!

            Best of luck with your journey!….beach

            Kimberly
            Online Facilitator
              Post count: 4290

              Hello – Yes, as Shirley said, I’ve been taking methimazole for close to 5 years now. I posted some comments on long-term use of ATDs in this thread:

              (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

              http://gdatf.org/forum/topic/42509/

              Until doctors one day find a way to *halt* the autoimmune process, all we can do for now is review credible research on the three available treatment options — and make the choice that we are most comfortable with. (With a doctor’s input, of course).

              Take care!

              Harpy
                Post count: 184
                VanIsleGal wrote:
                Upon talking to family in Morocco, we discussed about 5 people who had the surgery for Graves’ disease there, one of them permanently losing her voice. None of these people were given another treatment option. This is not an academic study, but I do know Morocco medicine stems from the European model of medicine.

                I based my decision on medical journal articles, studies, and personal stories. I have talked to people who have had success with RAI and many people struggling to regain health years after RAI. I have almost completed my PhD and I work at a university. I have access to journals and other scholarly articles with my university account. This is what I was reading. I don’t really know if these articles are available to the general public. I think most require a university account? I have saved some of these articles to discuss with my doctor and tell him why I didn’t feel comfortable with RAI.

                How many people die or suffer from myexdema coma after RAI or as a result of being hypo as opposed to thyroid storm with Graves’ Disease? Of course I will not chose to stay hyper. My goal is long-term drug therapy, but my endocrinologist will probably call me tomorrow and I will learn more.

                xoxo

                That’s pretty much the best you can do,
                Gather all relevant and related information, consider all the Pro’s & Con’s and make an informed decision, everyone will weigh benefits & risks differently, so even with the same information presented individuals may well make different choices.
                One thing I will say, keep researching and reading, the more you know the better you will be able to apply appropriate healing protocols.

                VanIsleGal
                  Post count: 66

                  http://acta.uta.fi/pdf/978-951-44-7081-3.pdf

                  On Page 32, this dissertation states that patients receiving RAI for hyperthyroidism receive 888 mSv per 1 mCi of radiation. I was to receive 14 mCi of radioactive iodine 131 (before I cancelled it) which would be 12 432 mSv of radiation over several weeks. This is equal to 621 600 chest x-rays, since one chest x-ray is .02 mSv (I have also read .1 for a chest x-ray, so it varies). This seems awfully high and needs more researching to verify, although I would hope a dissertation is accurate upon publication. Maybe I am misinterpreting a measurement or something? Note: I have emailed her to clarify this dose. Will post her response if/when I hear back.

                  I have tried to go back to the original source of the 888 stat, but haven’t found it yet. Correct me if you read this data differently than me.

                  This chart says .05 exposure to family and I read the exposure could be as high as 3mSv for family members, so equivalent to 150 chest x-rays on the high side of exposure.

                  http://onlinelibrary.wiley.com/doi/10.1002/cncr.22635/full

                  This article outlines the increased risk for certain cancers following RAI.

                  Also there are two varying half-lives for RAI, biological and physical. It is wrong and simplistic to think in terms of biological half-life only.

                  Cheers! My blood levels (T3, T4) haven’t stabilized in 7 months and I am not happy about it. My TSH has been undetectable for 7 months also.

                  VanIsleGal
                    Post count: 66

                    My email came back, so I don’t know how to contact Saara Metso, the author. I will search for other radiation exposure articles later.

                    Bobbi
                      Post count: 1324

                      It would probably be better to go with sources published in reputable journals that require peer review.

                      snelsen
                        Post count: 1909

                        A good idea to review the following, which are the guidelines for posting references on this site:

                        6. Facilitators have the ability to edit or remove posts that contain spam, inaccurate medical claims, inappropriate links, information on so-called “alternative” therapies*, or derogatory language towards another poster. Posted links must come from a well-established, peer-reviewed medical journal (New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.) or from a recognized medical association or governmental entity (American Association of Clinical Endocrinologists, American Thyroid Association, National Institutes of Health, etc.).

                        It seems that it is very important for you to continue to find references that contradict choosing RAI for a treatment. They are not very helpful references for all the readers on this board, for they do not meet the above guidelines.
                        All of us have our own preferences for one treatment over the other, and sometimes other medical issues dictate or rule out one or more of the treatments.

                        Aside from the ongoing dialogues on RAI, I am wondering how YOU feel, since your TSH, T3 and T4 indicate that you are in a state of hyperthyroidism. Has the whole subject of RAI come up in your world because you have not been responding to the ATD’s? Or are you taking them now? Have you had liver function labs done along the way? In general,
                        I am hoping that you feel ok, and that your heart rate is in an acceptable range.
                        Shirley

                        Kimberly
                        Online Facilitator
                          Post count: 4290

                          Hi all – The second link comes from a reputable source/journal, so I am fine with that one

                          However, I am not able to open the first link to check it out, as it is locking up my computer. My preference is to not edit/delete posts if at all possible, but I would suggest that the first link be removed if it does not fit the forum guidelines.

                          VanIsleGal
                            Post count: 66

                            The dissertation I posted is a PhD dissertation based on peer reviewed journals, two of them. They are in Finnish. A dissertation must be based on accurate information. I have a panel of 4 professors checking for inaccuracy and sloppiness. All 4 of them don’t have to be discredited allowing me to publish inaccurate info. I also must maintain a B+ (77.5 or 80?) average to stay in the PhD program, same rule as Master’s. I only posted information that I wanted before I got RAI. I even called the hospital for dosimeters, so I would know my radiation dose. Found 3 peer-reviewed journal articles on exposure to loved ones, but only one, the one I posted, on exposure to the patient.

                            My blood shot up because I was told to stop the medication for RAI. If it wasn’t for waiting for RAI, if I had of cancelled earlier, I am sure my blood would be normal. I was a shade off normal a month ago. I feel okay. I went on 2 hikes Monday not knowing my blood wasn’t normal.

                            I am in no way criticizing those who have chosen RAI. I am not adamant on posting information against RAI, but I am adamant in posting the info I wanted, because others might be searching for the same info. This is the only information I got relating to the dose of radiation a patient receives, the information I wanted. I found more than one peer reviewed article discussing the radiation dose for the thyroid scan (I think it was 63mSv for the 24 hour scan). A yearly average dose of radiation is usually between 2-4 mSv.

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