Don't want Radioactive Iodine
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| Mon, 03-21-2005 - 9:52pm |
Ladies,
Just wanted some input and advice. I will try to make this brief. In November of 2003 I was diagnosed with Grave's Disease and was told I needed radioactive iodine (RAI). Well, for various reasons I refused that and have been on a "block and replace regimen" of PTU and Synthroid. Here's the problem, my endo refuses to prescribe this regimen anymore even though I am doing well, and is really pressuring me to do RAI. I don't want to do the RAI and am very concerned about. I have some minor eye involvement with the Grave's and have read that the RAI can make it worse. Plus I have read where lots of people who get the RAI are rendered permanently hypothyroid, gain tons of weight, feel lousy, etc. Can anyone give me any advice on what to do? I would especially like to hear from someone who has undergone the RAI and especially if you had eye involvement. Thanks to all.
Tammy

Tammy, I was just recently diagnosed with Graves' in January. I have a friend who was diagnosed with Graves'a year ago. She went a year with the symptons before she was diagnosed so she was really bad. She has been on Tapazole for a year and still is not regulated, her endo is threatening RAI as well. She is refusing, both her sister and aunt have had it done and both are hypo now and require medication. I am scared to death that it will happen to me as well. Have you tried a different medication? I am on Tapazole as well and I just had my week follow up and my Free T4 went from 4.71 down to 2.39. Still high, I know, but a much better improvement. He has taken me from 1 pill a day to 2 pills a day and I need to go back in 6 more weeks instead of the orginal 2 months he had told me. But, I feel pretty good.
I hope that you find the info that you need and that you do well. Sorry I couldn't give more info on actual results of RAI!
Danielle
Danielle,
Thanks for responding to my post, the medication I have been taking since being diagnosed is PTU 50 mgs twice a day, (Inderal in the beginning to get my heart rate down) and Synthroid 5 mgs. per day. The "block and replace" regimen of the PTU and the Synthroid has really helped my symptoms and that is why I am so reluctant to stop this therapy. But my endo says "you can't stay on these medications forever". I don't know why if they are working and my thyroid hormone levels are normal. I am totally against the RAI and if push comes to shove I might just have to insist on the surgery if it comes down to it. I hope you do well with your battle with this disease. Just make sure you educate yourself to all your options in your treatment.
Sincerely, Tammy
Hi Tammy,
As I understand it, there is a limit to how long you can be on PTU due to the possible side effects to the liver.
Hi Tammy,
I have Graves too, and I was dianosed five years ago. I think I had it much longer, perhaps after the birth of my daughter even five years before that, and it got much worse when I went through several very stressful and traumatic events. Anyway, it took a very long time to get it regulated. My TSH would swing from high to low, so I was going from hyper to hypo all the time, usually in a three to six month period, which was when my dr. appts were. So I would go in say January, and be hyper, so he would say take five more milligrams. Then come March, I'd be hypo, and would take five less milligrams. This went on forever.....Most of the time when I'd be hypo, I was better able to tolerate that, even though I wouldn't say it was at all desirable. I ended up gaining about 80 lbs. at the most through all of this. I would gain steadily while hypo, and couldn't tolerate being hyper for too long before I knew something was wrong, so I didn't lose too much while hyper like most people.
Anyway, for about the last year, I've felt as well as I have in years. I've steadily lost weight over the past year. The first 20 lbs came off practically overnight. Last time I had my levels checked they were normal, high normal, but still normal, and I feel quite well, and my doctor tells me some people stay on tapezole (what i take) for the rest of their life if needed. I also take a small amount of atenolol(beta blocker), and for me I'll most likely continue since I have a history of high blood pressure separate from the hyperthyroid. So, it can take a long time to get regulated. Also, I don't see why you couldn't go on tapezole or stay on PTU. With RAI, you're almost sure to end up hypo, and then you take synthroid for the rest of your life. So what's the difference? The only difference I see is that if you're hyper, you can go into remission for no known reason, even people who don't take meds do this. But you can't have your thyroid destroyed and it heal itself. This is mainly why I didn't choose RAI.
Shellie
I know some people who have been on antithyroid meds for years.
Oh sorry, someone mentioned the liver, so I said to get it checked. I did a quick search online and didn't see anything of it affecting liver. Mostly WBC.
Are you talking about the Radioactive Iodine Uptake Test RAIU? I had that last week and I don't think that one destroys your thyroid, it just gives the DR information on what is happening with your thyroid. I have not yet been given any medications since I do not see him till next week, but he did mention Tapozile? which concerns me about going hyPO from being hpER and fluctuating. I am diagonised HypER now with high levels.
I am on several medications that make me have side effects and I do have the shakiness alot. I blamed it on menopause and the hot feelings. I also have a slight sore throat and swallow feelings,though. But, I also am very hesitant to take RX for this as I would like to just wait and see what happens alittle longer.
I did get a copy of the X-ray to take to my DR as he wanted to see it himself. It does say 52% at 24 hours where I read somewhere it should be only 35%. I very much enjoy all your input on this disease.
Thanks for the reply, I actually wasn't talking about the RAIU uptake scan, I was talking about the RAI that ablates the thyroid. The thyroid uptake test to my understanding is a test used to determine the thyroid's function and what part is effected by the disease. You might consider taking the Tapazole or PTU along with a betablocker such as Inderal to help slow your heart rate down, and get you feeling better. I was shaky, weak, having muscle pain and weakness, my heart was racing, having diarrhea, my hair was falling out, etc. and then I went on the the drug PTU and Inderal and felt a lot better within 2 weeks. I have been taking the PTU for a little over a year, and as I stated in my original post I hate to stop the medication since I am feeling so good. I understand that long term use of PTU in some instances can cause liver damage, and that is why I believe my endo wants me to stop it, but I hesitate because I don't want to become hypothyroid. A good book for you to read is "Thyroid for Dummies" by Dr. Alan Rubin. I highly recommend it. Take care and let me know how you are doing.
Tammy