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  • Darcy43
      Post count: 125

      Here are my numbers. I went to my endo yesterday. This has been my journey.

      For me, normal range is (TSH) (.4 – 4.0)
      (T4) (.8 – 2.00)
      They never test my T3 but after my recent numbers, she has ordered that test.

      August, 2011 TSH .001 /T4 7.77 (Hyper very hyper…hell)
      Feb, 2012 TSH 1.05 /T4 .85 (HUGE CHANGE, BUT on the verge of going hypO so they lowered the dosage
      May, 2012 TSH .03/T4 1.78 (the number look safe)

      She is still concerned that my TSH isn’t at .4 but she doesn’t want me to stay on Methimazole for obvious reasons. She told me that, in America, after 18 months that is it because of the damage it can do to your liver, etc. and no one should stay on it for a long period of time. So she started taking RAI

      Seriously??? I suggested surgery and she said no…you don’t want that.

      I said we you are talking about destroying my thyroid any way and I would have to take a week off and not be around anyone and the symptoms….the eyes, the OMG I don’t want to do it.

      She ordered more test. She told me by next week if my numbers are not either in remission (which she claims I could be really close or not based on how I looked yersteday..she said I looked amazing and when I first came to her I was really sick), but that we should discuss RAI.

      I really don’t want RAI. I have a friend who had it and although he is alive, he is not the same…

      I will continue to pray, keep doing what I have been doing and hopefully I can get off the meds totally….Because after RAI I will have to take Synthorid for the rest of my life. She said that is much safer than taking the Methimazole…

      scared but I will face what comes…Damn damn damn this Graves…

      Darcy43
        Post count: 125

        Ok thanks for viewing…..

        Onward and upward.

        Bobbi
          Post count: 1324

          Hi, Darcy: I’m sorry you are finding yourself in this quandary.

          A bit of — hopefully — perspective. It sounds like you are boxing yourself into a corner, both emotionally and medically. You don’t want RAI, and the reasons sound more emotional than rational to me. And, I’m not arguing that you should do RAI. I’m just pointing out that basing your reasons on fear makes little sense when you are coping with a serious illness that can cause life-long repercussions unless it is treated promptly and effectively. FEAR BEING HYPER. It is currently the devil you know, but it is a devil nonetheless. The example of your friend, notwithstanding, RAI has made millions of us healthy again. Surgery to remove the thyroid may be a more common occurrance now than it used to be, but it is not considered “as safe” as RAI. And your doctor may be splitting hairs on that, I don’t know. Surgeons nowadays seem to have a better handle on thyroid surgery than they did in the past. Regardless, please try to be objective.

          And, furthermore, if you don’t think your doctor is giving you good advice, consult another endocrinologist with good credentials and see what that doctor has to say. Don’t “shop around” for a doctor who will tell you what you want to hear. That doesn’t serve your long-term health either. But getting input from another equally well-qualified source can sometimes help clarify our choices.

          gatorgirly
            Post count: 326

            Hi Darcy. Just wanted to let you know that I originally was opposed to RAI for a number of reasons but after meeting with both a surgeon and a nuclear radiologist, I decided RAI was a better choice for me than surgery. There is no one perfect treatment, as all have their risks and benefits, but I think you should meet with a surgeon as well as someone in the nuclear medicine department who can talk to you about RAI. You don’t need to be in isolation for a week. It’s typically 72 hours. I had mine done on a Friday and went back to work Monday morning, so you don’t need to take a week off from work unless you want to.

            To say that you know someone who had RAI but has never been the same is a little unfair. I’m not sure what’s wrong with your friend, but RAI is a proven, safe, effective treatment and I don’t think our endocrinologists and radiologists would allow to undergo a treatment that had more risks than benefits.

            I had RAI and have felt fine ever since. It’s been a struggle finding the right Synthroid dose, but people who had surgery can experience the same struggle. I developed TED, but as you know, RAI’s effects on TED or the likelihood of TED developing or worsening are not known. Plenty of people never develop it after RAI or do develop it after surgery or elsewhere in their Graves journeys, regardless of treatment. Your endo can prescribe steroids for before and after RAI to reduce the likelihood of TED, too.

            I agree that a second opinion would be wise, especially if you feel your endo is pushing you to one treatment versus others. Can you ask her why “you don’t want surgery”? Maybe based on your medical history, it would be too risky. However, I think the most valuable opinions you can get are the surgeon’s and the nuclear radiologist’s (or the tech’s, since they are the ones with more patient interaction). For me, it was the surgeon who would rather turn down a $12,000 surgery than put an otherwise healthy 25-year-old through surgery when a pill could do the job.

            I am by no means recommending RAI for you. I just want to make you a sound, rational decision rather than one based on emotions and misinformation and one person who maybe had a bad experience with RAI. Graves sucks, I agree. But you WILL get better!

            Carito71
              Post count: 333

              Hello Darcy43,

              I’m still new to all this and I’m still on Methimazole but I also lean more towards surgery if I have to choose.

              On a positive note, I know a lady who had RAI 30 years ago and who is doing great. She hasn’t had to change her synthroid dose in years. She tells me that she keeps her weight the same and that does wonders for her with the synthroid. She recommended RAI to me.

              I’m afraid of the radiation and that is why I lean towards surgery but my goal at the moment, if the Rx is working, is to continue taking it to try to achieve remission. Is your liver showing signs of stress? Maybe a second opinion might help. I’m not sure if in the USA there are zero Drs that would continue you on the Rx at a lower dose but it is worth finding out. I haven’t researched it yet b/c I need to first see what my Endo thinks about long term treatment with Rx.

              Anyway, not much help, sorry. Hope soon you’ll find the best answer for you.

              Caro :)

              beach45
                Post count: 178

                First, I only go by my own experience and not to persuade anyone into the choice I made;
                Second, the thought of RAI was scary for me prior after being on Methimazole almost 2 years; no remission or chance of after time.

                I did have two endocrinologists tell me I could have either RAI or surgery.

                I did a lot of research and spoke with people who had RAI; I tried not to obsess over it yet it was very difficult and not to get myself too wrapped up in the horror stories of post RAI on the Internet.

                I know of so many people who had RAI and that when I said how long I was on Methimazole, they looked at me like why. They looked fine, not overweight, no eye problems and living healthy and productive lives.

                My husband’s cousin is an anethesiologist and she had RAI 20 years ago is 60 years of age and looks and feels great. She did not understand why I was on Methimazole and it was not looking good for remission for me or even maintaining levels on a very low dosage as some people can do for years. She said she had it on a Friday, back to work on a Monday and never looked back. She told me once that she puts so many young women under for TT and doesn’t understand from her own RAI experiences why they do not opt for that choice.

                I have some other people in my life who had RAI 15, 20 and 30 years ago, look terrific, don’t even think about it, no eye problems. Only one woman who had it 7 years ago and had been in a storm prior, says her energy levels are never the same yet that too is because her doctor is not following her thyroid levels that much as she even recently had TSH over 3 and was feeling lousy. Always good to have a good doctor follow you either post RAI or TT as we know.

                It is not a happy thought and I would never persuade anyone either way, RAI or TT because with each there can be a healing time afterwards. One excellent endocrinologist, highly recommended, recently told me that people with having both RAI or TT can months or years later on develop TED. Having TT he said does not make a person exempt. Yes though people told me chances of eye disease worsening after RAI is greater.

                I have moderate thyroid eye disease and I still had RAI. My thyroid eye doctor who specializes in the TED, in my case..told me no steroids and go for the RAI. He is monitoring me for the next year; he and his PA told me that they rarely see anyone with major eye problems post RAI.

                And maybe you will be fortunate and go into remission on MMI and/or decide on an alternative.

                Third, I am the last person who is into health and natural means to have every even thought of taking RAI. For some reason I did not want TT and I had two excellent surgeons here who could have done it for me. I had some eye irritation pre-RAI and have some in my right eye more post RAI yet drops help and sunglasses and I can deal with it. I don’t know though what is out there only being 3 months post RAI in the future so it is too early to tell. I just know of those people who had it years ago who did really well and even the lady who had it 7 years ago looks terrific; it is more her energy levels are not that good yet she is not overweight either and takes her Synthroid every day.

                Lastly, Best of luck with this and I consulted with four endocrinologists; one who left my area unfortunately and researched, talked with people and made a decision. Yet I was careful not to listen to too much negativity as yes I know some people had problems yet there are so many who never did. It is a mixed bag unfortunately because we have Graves disease and that condition alone has to be treated and for me, I was at the point I had to make some choice….beach (p.s. sorry if there are typos as I type very fast and learning to be a bit more accurate!)

                Darcy43
                  Post count: 125

                  thank you all for responding. This is truly a tough decision.

                  Bobbi – thank you for your insight. I know you have had graves for years, as most on this board. this has only been a year for me (being diagnosed) so YOU BETCHA I’m emotional lol. Serously, my decision, however, is not based solely on emotions. I have consulted with several physicians, two primaries, one my endo, and also an oncologist because the word radiation came up.

                  Gatorgirly – I am not trying to be unfair, but this is a extremely close friend of mine who is now in his 50s and had the RAI in his early 20s and I trust his judgment. He isn’t the same and his eyesight is nearly gone. That is what scares me the most..not the bulging eyes…I know I can be vain, but I am not that vain. I would rather be alive with bulging eyes, but I feel a bit saddened to think I may be blind before 50 if my eyesight is affected after RAI (which studies show *can* happy. Probably, maybe, possibly, yep.

                  Beach and Carito – thank you so much for giving me balance. I am praying and I do know for every horror story there are also positive stories too. I am just scared and yes, from doing tons of internet reseach (which can be a Godsend – this site- or a curse – all the scary stuff you read) so many folks are anti RAI.

                  I know everyone is different and I am glad that my endo, who is really great and nice and patient, was firm but did tell me let’s wait and we will talk later. I just needed to hear the pros and cons (and I did search RAI on this site – all posts were not positive), I don’t want to lead to TED, OD, etc. but then again I want to get well.

                  I get more labs tomorrow and I will wait to hear the results etc.

                  Taking very deep breaths. I cannot help it, it am being extremly honest..this sucks…..

                  Sometimes it feels like the cure is worse than the disease…

                  adenure
                    Post count: 491

                    Hi Darcy,

                    You know I’ve been in your shoes and feel your pain- I really do. When methimazole sent my liver enzymes soaring (I remember it was a Friday night that I got my labs emailed to me), and the on call doctor told me to stop taking the medicine that night, I freaked out! I thought for certain I was going to spiral into hyper hell again. I knew that my only options were RAI and surgery, and on top of it, I couldn’t go back on an ATD to control my levels- I was completely freaked out. Felt like a time bomb and had no idea how much time I had to make my decision on RAI or surgery. I get the fear, the worry, the what if’s. Knowing you HAVE to make a decision and not knowing how much time you’ve got to do it sucks.

                    What I would say is that, as long as your doctor feels you are a candidate for both surgery and RAI (safety wise, that your thyroid levels are stable enough, heart rate is stable whether with or without the betablocker)— as long as your doctor will support whichever decision you make, and you’ve done your research, go with your gut. Whatever it right for YOU, might not be right for the next person. The important thing here is having your doctor’s support (not necessarily his/ her recommendation though as my endo, like yours, did not recommend surgery- simply bc it is more invasive and there is a possibility of complications- those are very real things, but as far as me, I was a candidate for surgery as my thyroid hormone was stable, heart rate was fine, and I am healthy over all). So, my endo. tried at least 3 times to persuade me to do RAI; he said it was a ‘no brainer’ and said if it was his sister or wife, he would want her to do RAI. I really like and respect my endo., and I still am his patient. He communicates well with me and works with me, listens to me- will order my labs (even the T3 which he didn’t feel was necessary at this point). So, we have a good doctor/ patient relationship. That is important. In the end though, we take the advice, do the research, and have to do what is right for us- whatever that may be.

                    I didn’t want to be away from my family with RAI (especially my breastfeeding infant). I too worried about eye issues and radiation in general. Before I knew methimazole didn’t work for me, I always leaned towards surgery- not sure why, just did. I knew 1 person who had RAI, she didn’t recommend it. Again, I KNOW that it works well for many, many people– just like methimazole works well for many, many people. But, everyone is different, and my gut told me surgery. So, I was fortunate to have a wonderful surgeon and a surgery without complications. Do your research, talk with and listen to your doctor, and then go with what is right for you.

                    Alexis

                    snelsen
                      Post count: 1909

                      I agree with:
                      go with your gut.
                      Shoulds and oughts are hard to live with. Pleasing other people who decide your health care for you based on anecdotal is not a good choice.
                      YOu have choices, so given all the options, opportunities, pros and cons,
                      I think you will feel so very good once you have MADE your decision!

                      REad the posts Alexis wrote while she was struggling with this. Plus all the rest of us. Limbo is very difficult.

                      I have a bias about saying “TED and RAI” in the same sentence. I have had a terrible time with TED. I am sure that if I had any changes in my eyes, I would want to stay away from RAI, prednisone (which I hate) or not prednisone. I wouldn’t want to take that very small chance. There are not years of research about this, but there is some evidence that says RAI can exacerbate TED.

                      I had surgery! Many decades ago. More than four.
                      Happy that I had surgery.
                      Shirley

                      Bobbi
                        Post count: 1324

                        Hi, Darcy: Just a quick comment to something you said in your comment to me — i.e. that you know I’ve had Graves for years. From my perspective, that is not a true statement. And, to all of you out there who want to argue with me, please don’t, because this is my personal take on things. So, yes, I have Graves antibodies. True. But at this point, it is no big deal because I got rid of my thyroid, and I have been healthy….repeat HEALTHY….for 15 years. Replacement hormone works well. So, I don’t really think of myself has “having Graves” the way those of you who are currently battling hyperthyroidism or the eye disease think of yourselves as “having Graves.”

                        I stick around here on this bulletin board, not because I still consider myself sick, but to give those of you who are in the throes of battle with this nasty disease a bit of hope. No, to give you LOTS of hope. I know how ill you feel, or how downright scared you are with the eye disease. I’ve been there. I was dreadfully ill. But, I am the norm. I am like thousands of other people who, through one treatment or another, got well again. Our treatments work to give us back our health. Please keep that thought firmly in your minds while you are casting about for what treatment option to choose. They are ALL better than remaining hyperthyroid.

                        Carito71
                          Post count: 333
                          Bobbi wrote:
                          I stick around here on this bulletin board, not because I still consider myself sick, but to give those of you who are in the throes of battle with this nasty disease a bit of hope. No, to give you LOTS of hope. I know how ill you feel, or how downright scared you are with the eye disease. I’ve been there. I was dreadfully ill. But, I am the norm. I am like thousands of other people who, through one treatment or another, got well again. Our treatments work to give us back our health. Please keep that thought firmly in your minds while you are casting about for what treatment option to choose. They are ALL better than remaining hyperthyroid.

                          Thank you. It does give us LOTS of hope. I know it did me when I was super sick a month ago. And it still does now when I’m starting to feel better. Please continue sharing your experience Bobbi.

                          On a positive note, even though I’m afraid of RAI and lean right now towards surgery as a second option if the medication does not work for me, one thing that does attract me about RAI is that I’ve read that there has been a small % of people who have become euthyroid after it without having to take pills. It is a small % but I like that about it. One never knows if one would be in that small %, right?

                          Caro :)

                          Kimberly
                          Online Facilitator
                            Post count: 4290

                            Hello – This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach 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://www.gdatf.org/forum/topic/42509/

                            As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.

                            Take care — and keep us posted!

                            Darcy43
                              Post count: 125

                              To Bobbi:

                              First I apologize. I had you confused with another facillator who is on Methimazole for years. The only comment I thought I really wanted to convey to you was when you stated I was being SOLEY emotional with my decision (left side of brain versus right side). I even added LOL. I wantd to clarify. Enough about that, I know you are knowledgable and I appreciate your input and I said I did.

                              Alexis you are amazing and you really do help alot (as do everyone who esponds) because you are/have been in my shoes, especially with the doctors saying “you must do this, don’t do that…” I know they have the education, but we do research as well. I just want to keep all options that are best for FOR ME as you said. Thanks so much for your response and I am truly glad you are recovering well.

                              Thanks Kimberly. I will check out the site. You are truly insiteful, and generous with your kind responses and never judgmental. You state the facts and you always give links, research to back up your responses. This is truly helpful and I really appreciate you.

                              If I left anyone out..please do not take offense. At work and can only jump on periodically.

                              Here is to good health and me seeking a second opinion from docs…

                              snelsen
                                Post count: 1909

                                Just a short comment.
                                I was euthyroid for over 20 years after my thyroidectomy.
                                I think we have to remember, that when we were our
                                “normal” selves, there were probably small adjustments made in the loop between the pituitary and the thyroid gland, made all the time, and all of our lives. Lots of variables govern it, probably some of them are not know. Certainly the passage of time (ie, aging!) is one of them.

                                So, I don’t think there are probably many valid conclusions comparing a euthyroid state, ie, no need for supplemental hormone, can be reached.

                                Plus, the current standard of care is, I understand, to obliterate the thyroid gland, so the dose can be regulated by docs more easily to our benefit.
                                The old standard of care was to leave a “little bit” of thyroid gland, with the goal of preventing us from being HYPER, but able to give thyroid hormone pills when we are HYPO.
                                My two cents.
                                Shirley

                                Carito71
                                  Post count: 333
                                  Kimberly wrote:
                                  Hello – This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach 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://www.gdatf.org/forum/topic/42509/

                                  As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.

                                  Take care — and keep us posted!

                                  Kimberly, I have left you a message in the link you recommended ;)

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