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  • Anonymous
      Post count: 93172

      I did not see it, Anne.
      Bobbi – NGDF Online Facilitator

      Anonymous
        Post count: 93172

        I thought that I sent out a post on 3/12/08–it appears when I search my title, but it does not appear otherwise. I also have not heard anything back on it. Did I get it sucessfully transmitted?

        Thanks
        Anne

        Anonymous
          Post count: 93172

          This is a revised repost since I don’t think that the first one went through correctly.

          Dear Graves Patients:

          I want to share my experience both with Graves Disease and the radioactive ablation treatment that I just had the 8th of February (6 weeks ago). I hope that it can help someone out there that might be like me.

          I was diagnosed with Graves in early 2006 after my third child was born. I decided to try anti-thyroid hormones b/c I did not want to have the radioactive restrictions as the mother of three small children, and I hoped that maybe I could achieve remission. After a year on PTU (I was allergic to tapazol)I was slowly weaned off of the anti-thyroid hormone. My blood levels remained normal for 6 months and then I went hyperthyroid again. At my doctor’s suggestion, I went directly into the radioactive ablation treatment (after 2 weeks on the restricted iodine diet.)My blood level of T4 free going into the procedure was 2 and I was at less than 0.01 TSH. My gland was roughly twice the “normal” size. My doctor told me that I was “in a good place” for having the ablation procedure–she was absolutely wrong. After the uptake tests, I was dosed at 42.3 mcI of I 131 b/c of the size of my gland and my relatively slow uptake. Everything appeared fine for about 4 days and then I started to go into a “mild thyroid storm”. I am now in the 6th week of the storm and am slowly regaining my health, but I have been a very sick person. The doctor put me back on PTU about 10 days after the procedure and at my worst I was taking 400mg of beta-blockers for heartrate problems and the shakes. I experienced 7 days of truly horrible symptoms that ranged from fever, entire body shakes, severe diarrhea, and a heartrate of 120-150 beats per minute. I could not sleep, was completely heat intolerant, and my vision was poor. I had regularly scheduled blood work done about a week after I hit the worst and my T4 was 5.8. I am now in my sixth week following the onset of the storm and I am down to 100mg of betablockers for heartrate control and the worst of the symptoms have passed. I still have trouble focusing and remembering things, but I am much more stable physically. My hair started to fall out after about 3 weeks. I doctor at the University of Nebraska Medical Center in Omaha, and both my endocrinologist and the nuclear medicine doctor that dosed me say that my case is very unusual, but I want people to know what happened to me so that they can be properly informed going into the procedure. Everything that I read and was told by my doctors indicated that the procedure was very safe and easy; and my experience was that it was NOT.

          I am still hopeful that the procedure will be sucessful. The doctor told me that with my complications it could be 6-12 months before they know if it worked. Has anyone else had this happen to them with the ablation procedure? If so, long term how did it pan out? Did the radiation work? Were there other long term health side effects from the storm?

          Anyone going into an ablation, please ask your doctor about storm complications and make sure that you are physically in a good spot to undergo the procedure. I slipped through the cracks and my doctor underestimated the strenth of my gland and the amount of hormone that was stored in it. I should have had another round of PTU first to drain my gland before the procedure.

          Anne
          Cozad, Nebraska

          Anonymous
            Post count: 93172

            I removed your post for the reason you state you are still in a protracted thyroid storm. What you are experiencing is not thyroid storm, but a poor response to the RAI treatment.

            Thyroid storm is an extreme medical emergency that will place a person in the hospital and more than likely ICU. It is an immediate life threatening experience.

            If you are having bad symptoms from the excess thyroid hormone releasing from your thyroid that needs attention as you are receiving right now.

            I did not want the average reader to think that if they were in thyroid storm it could last for weeks and they could stay at home to have it treated. If a person is in thyroid storm, they need to go to the ER immediately. They will be put in the hospital and will not be released until they are out of danger.

            It is a matter of what to call what you are experiencing. It is not a thyroid storm, but I know it still makes you feel horrible. I am not trying to discount your feelings. Just wanted to make the difference plain to the average reader.

            Posts that state wrong information will be removed until a member of the board of advisors have a chance to review it. We try our best to ensure that accurate information is provided on our site.

            I hope you start to feel better soon. It took me a year for my thyroid levels to even out. In hindsight I would have done the thyroidectomy for that reason.

            We are only a click away,

            Jake George
            On-line Facilitator

            Anonymous
              Post count: 93172

              I was just wondering something. Since I had my tyroid somewhat removed in June of 2007 and am now facing RAI in the next few months, do you think my time period for feeling better will be longer then the person that just had RAI? I know that my new Endo stated that he will be giving me the hightest dose known since my thyroid is being difficult. To those reading this post, my problem is VERY unusual and should not be compared to yours.

              Diane

              Anonymous
                Post count: 93172

                Jake-

                It is interesting that you are responding the way that you are. My doctors told me that it was “mild thyroid storm”. I have a day to day diary of my symptoms and they used that to diagnose it. I agree that I was not in ICU and did not experience things to the extent that a full blown storm will cause; however, I was just passing along my story as I have been told by my doctors and experienced first hand. I am sorry that you do not agree. I am not trying to make trouble–simply trying to inform others so that they could be better prepared. I will stop posting and forget this forum if that is the way that you feel. I’m sorry that I bothered you. I was looking for help and support from others while also trying to help others be better prepared for the procedure since neither one of my doctors prepared me correctly.

                I had hopes that this forum could provide some support, and I am disappointed that you are not allowing readers to know what can happen with a Radioactive ablation “gone wrong”. I believe that people have a right to know what can happen before they make a decision to go forward with a medical procedure. I am very upset with my doctors b/c they did not fully prepare me prior to my procedure. I was trying to warn others so that they would not find themselves in the same position.

                Both of my doctors were unable to tell me long term what I might be looking at with my Graves b/c of the unusual reaction that I had. I was hoping that I would find someone on this website that experienced a similar reaction and could tell me their story.

                It was my understanding that if you chose to not post someone’s message that you would send out an email to the person instead of just ignoring it. I never recieved anything from anyone that is why I sent the second message. I would have appreciated a direct email from you. Again, it was not my intent to cause trouble although I disagree with you refusing to post it. It sounds to me like you are allowing lawyers to run your website; and I don’t think that is in the best interest of your members.

                Anne

                Anonymous
                  Post count: 93172

                  Hi, Diane:

                  I, too, had a “difficult” thyroid — although certainly not so difficult as yours seems. If I read your post correctly, you had thyroid surgery at some point in time, but are still hyperthyroid? And, as a result, are going to have to have RAI sometime soon.

                  As to whether your RAI treatment will make you sicker than the “normal” RAI patient, I don’t know of any way for anyone to tell you. Obviously, we’ve just seen a post where someone had a very difficult reaction to their RAI. It can happen, but it usually does not. Adverse consequences can occur from ANY medical intervention, for ANY type of disease. So please do not panic at information about one person’s bad experience.

                  People do not go into true thyroid “storm” after RAI, but DO have excessive levels of thyroid hormone dumped into their bodies as the thyroid cells die off. The difference is more than simple symantics. Thyroid storm is an out-of-control thyroid that dumps HUGE quantities of hormone into the body, continuously, until emergency medical attention can stop it or until the patient dies. The thyroid cells doing this type of dumping are continuing to produce hormone. After RAI, on the other hand, dying thyroid cells dump their stored quantities of hormone into the blood, but they do NOT produce new hormone to dump. In other words there is a limited amount of time when there are large amounts of hormone going into the body. It can take some weeks for the thyroid cells to die, and during this time, there will be higher-than-normal levels of thyroid hormone in the body. There are, typically, treatments that our doctors give us to ameliorate the problems associated with the extra hyperness. One is to give us beta blockers (if we can tolerate them) to protect the heart, and moderate the tremors. The other is to put us back on antithyroid drugs, after enough time has passed that the doctor feels they will not interfere with the RAI.

                  I realize that this does not quite answer your question, but I hope it answers part of it. And I do wish you good luck with your own RAI.

                  Bobbi — NGDF Online Facilitator

                  Anonymous
                    Post count: 93172

                    Dear Bobbi,

                    Thank you for responding to my post. I guess I was having one of my bad days when I did post. I understand that everyone is different and may react differently then others. Maybe I’m just tired of all of this.

                    You are correct, I was told that a very small amount of my thryoid was left in due to the location of it. My thyroid is so large again that it can be seen by others. So back on thyroid medicine I go. I never went into Hypo mode after surgery. I’ve always remained Hyper. But I am a bit of weirdo to begin with. Ha Ha Ha (Laughter is the best medicine they say.)

                    I’ve been on a beta blocker for over 2 years for my hear rate. Recently underwent several stress test to see what type of damage has been done to my heart since it continues to beat at a rapid rate regardless of the meds. I am happy to say that there wasn’t a real concern for my heart and they feel once my thyroid dies my heart rate should return to normal. I’ve also been on prednisone for over 2 years. Just when I think I will be weened off, they go and increase it again. My Endo and Eye Doctor told me that after the RAI they will increase my prednisone to 120mg due to my eye problems.

                    Like I stated before, to those reading the post, Please do not compare my problems to yours. And to the person you posted about the Radioactive Ablation I thank you for posting and hope that you stay with us because this truly is a wonderful web site. Besides you need to let me know how you are feeling. PLEASE

                    Thank you all again and God Bless You All.

                    Diane

                    Anonymous
                      Post count: 93172

                      Anne,

                      I’m so sorry that you are not doing well and that your experience here, I believe it was your first time, was not good. Remember, you are suffering right now from a lot of stress and anxiety along with the Graves. I’ve been there with you as far as some of the responses. I also have had a posting pulled, but I did receive an e-mail.

                      Take time to just go back and read old posts for now. Search by word or just start browsing. You will learn so much. I was off for 10 weeks before I went back part time for a month and I did a lot of browsing. I learned a lot, healed some, and met some of the nicest people on this website. The facilitators are trained to help us, and they do.

                      Don’t quit yet. Give them, and us, a chance. Believe me, this site will not only teach you, it could help you save family and friends (they just can’t understand it when we are in the “crazies”)

                      Trish

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