Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 In a message dated 8/25/2003 2:12:45 PM Eastern Daylight Time, cfink@... writes: > M.Sara Rosenthal called The Thyroid Sourcebook, > Hey Corey, (Kudos to you for searching for information on your wife's behalf!) Really bad book...full of misinformation. I suggest " Thyroid For Dummies " , Elaine 's " Graves Disease A Practical Guide " and Dr. Ridha Arem's " The Thyroid Solution. " Before I took RAI, I found plenty of websites and books (including Sara Rosenthal's) that said RAI was safe and the treatment of choice, so I did it without investigating further. Huge mistake. RAI is the treatment of choice for the western world because it is cost effective. In most of Europe and Japan, it is a last resort, never considered for children or people of child bearing age. My opinion of RAI will always be negative and I wouldn't advise my worst enemy to take it. You can see my pictures, and read my story at Mediboard, at the link in my signature. While you are at Mediboard, please read the thread called " Thyroid Awareness 101 " . Lots of good information for newly diagnosed and people considering a permanent treatment option. Is your wife doing okay on meds? Be aware that the meds are the only treatment option that address the autoimmune nature of GD and offer the outcome of remission. And they can be taken safely in a maintenance dose for life if necessary...Granny has been continuously on Tapazole since 1979 without complications. Only complication has been yelling and screaming to be kept on meds. I say, if it ain't broke, don't muck with it! Please read all you can....the good the bad and the ugly, before you allow your wife to put radioactive waste into her body for no good reason. A thyroid is a terrible gland to waste. BTW, I am 2 years post RAI and still not stable on replacement meds. The " one pill a day " thing is a myth for 1/3 of post RAI patients . Quite a crap shoot. God bless, <A HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 In a message dated 8/25/2003 4:02:04 PM Eastern Daylight Time, cfink@... writes: > I've seen the " lisa site " and I'd like to state that she had TED > prior to the RAI, so I don't think it's fair to say that the RAI did > that to her, it only enhanced what she already had. Corey, I know you are looking for open debate and I applaud that. The fact is that not only can RAI worsen TED, it can trigger it as well. TED can worsen or develop after thyroidectomy and treatment with ATD's, but at a much lower rate than with RAI. The key is antibodies. The same antibodies that cause GD also cause TED and pretibial myxedema. These antibodies are called TSI (thyroid stimulating immunoglobulins) or stimulating TrAb or stimulating TSH receptor antibodies. Thyroidectomy will somewhat lower these antibodies. ATD's dramatically lower these antibodies, thus the possibility of remission. RAI STIMULATES the production of these antibodies, thus the possibility of worsening or triggering TED or pretibial myxedema. At this time, there is no way to pinpoint who will or will not have adverse effects post RAI. So, like I said, it is a crap shoot. Also, RAI does not cure GD. It replaces hyper with hypo....same for thyroidectomy. More and more they do not try to formulate the perfect dose of RAI to produce euthyroidism, the goal is to totally ablate the thyroid to enduce hypothyroidism without a second dose. This doesn't cure the autoimmune disorder that is the nature of GD...it " cures " hyperthyroidism, that's it. Now you are left with a lifetime of battling hypothyroidism instead, which has been worse for me than the hyper stage I went thru. So, yes, 2/3 of post RAI patients seem to be sailing thru life and I so envy them. I also suspect that a lot of them have since been diagnosed with things like fibromyalgia and have no idea that they are actually hypothyroid. The thing is, a 33% chance that you will have a hard time post RAI is a huge risk factor....if I had known about it, I would've declined. I recently posted this data at Mediboard...some data that you should consider: The 1998 Bartalena abstract says this: > quote: Among the 148 patients treated with methimazole, 3 (2 percent) who > had ophthalmopathy at base line improved, 4 (3 percent) had worsening of eye > disease, and the remaining 141 had no change. > <A HREF= " http://content.nejm.org/cgi/content/short/338/2/73 " >http://content.nejm.or\ g/cgi/content/short/338/2/73</A> The following full text Bartalena article says this: > quote: Although the link between thyroid autoimmune phenomena and orbital > autoimmune phenomena, responsible for GO, remains to be definitely proven (see > Section II), it is conceivable that the exacerbation of thyroid autoimmune > reactions may adversely affect the course of the ophthalmopathy (191). This > might also be the case in the presence of spontaneous fluctuations of thyroid > status due to imperfect control of thyroid function by thionamides (200). > (One thing I find interesting in this article is that Dr. DeGroot says that TED seems to worsen more for patients who have had 2 doses of RAI rather than just one. If you read on his website now, he RECOMMENDS a 2nd dose of RAI to patients with severe TED in the hopes of ablating any thyroid tissue to lessen antibody activity! Geesh!) <A HREF= " http://edrv.endojournals.org/cgi/content/full/21/2/168#SEC7 " >http://edrv.e\ ndojournals.org/cgi/content/full/21/2/168#SEC7</A> In the following 1992 Tallstedt abstract, there were 2 control groups: 20 to 34 years (54 patients, group 1) and 35 to 55 years (114 patients, group 2). Group 1 was treated with either Methimazole or surgery, group 2 was treated with either of these or RAI. (This study was shot down by the medical community because the methimazole and surgery patients were not allowed to go hypo and the RAI patients were...how many RAI patients are put on replacement before they go hypo? Hmmmm. Seems like real life to me.) Results were: > quote: The frequency of the development or worsening of ophthalmopathy was > similar among the patients in group 1 (medical therapy, 4 of 27 patients [15 > percent]; and surgery, 3 of 27 patients [11 percent]). In group 2, > ophthalmopathy developed or worsened in 4 of the 38 patients (10 percent) treated > medically, 6 of the 37 patients (16 percent) treated surgically, and 13 of the 39 > patients (33 percent) given iodine-131 <A HREF= " http://content.nejm.org/cgi/content/abstract/326/26/1733 " >http://content.n\ ejm.org/cgi/content/abstract/326/26/1733</A> My best to you and your wife Corey! Let me ask you...what does your gut tell you? God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hey everyone. My wife has GD and HyperT. She is not an avid internet user, and I am trying to find out all the info I can from the net for her. She doesn't have Hashimoto or TED. We are both 26 and want to have kids in the next 2-5 years. She has been on PTU for 1 year and finally decided to see an endo. He is suggesting RAI. I noticed that the people on this site are primarily ANTI-RAI. Why is that? Everything I read says that it is safe, is performed on 90% of Hypert/GD patients and has been used for over 35 years. We had questions about fertility, but the only problems with that are if you are pregnant when you receive the treatment. One year after t-ment, and the Thyroid is stabilized, it appears to be safe to have children. I've read all the negative opinions. I'd like to hear from some positive outcomes from the RAI. We are definitely taking our time on this and will not jump to conclusions. We picked up a book last night by M.Sara Rosenthal called The Thyroid Sourcebook, and it is very informative. Thanks for your advice, support, and welcoming us to the group. Concerned Husband, Corey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Welcome Corey, I have not had RAI and after some extensive research I will not undergo the procedure, ever. In my research I found that we are the only country still treating Graves with RAI as the first treatment option. Many people become hypo-thyroid after RAI and need to take replacement thyroid hormone, forever. Being hypo can cause fertility problems on it's own. Also, with the proper course of ATD (anti-thyroid drugs) many people achieve remission! No pills, no health problems, just remission! Graves disease is actually an auto-immune disorder in which the immune tricks the thyroid into producing too much hormone. The thyroid is the victim in this disease, not the culprit. By taking the RAI your wife's thyroid would be destroyed, no going back, no changing your mind later. It is permanent and irreversible. In some people when the thyroid is destroyed the slightest TED can go crazy! Even if your wife's eyes are only a *little* bulging they could become much, much worse after RAI. She may not have full blown TED right now, but she could after RAI. Once upon a time people used leeches to cure illness. At one point it became apparent that there were other, better ways of treating illnesses. That's kind of where RAI is right now. RAI will trade hyper for hypo. You don't get " better " you merely get a new set of problems to deal with. My own mother-in-law was treated with RAI over 30 years ago. Since then she has developed many problems. She has battled depression, can't lose weight, has very low energy and when she gets sick it takes weeks for her to recover. It was not like that before RAI. She went from being the type of mom who did everything with her kids to the type of mom who *couldn't* do anything with her kids. After 30 years she still has yet to find a suitable dosage of replacement thyroid hormone that makes her feel good. When she does her doctor tells her that her thyroid levels are too high and they reduce her dosage. There are many folks who have had children while on ATDs, usually PTU. You say she's been on PTU for a year and is just now seeing the endo? What tests have they been monitoring her with? Has she been getting regular blood tests to show her free T3 and free T4 levels? Or has she been monitored mostly on her TSH level? I know you were looking for " positive " RAI info but I just don't have any. Right now I'm on a low dose of PTU hoping for remission, again. As more research is done into Graves the more confident I am that someday there will be a cure. I will still have my thyroid alive and well when the cure comes along! in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Anti-RAI Hey everyone. My wife has GD and HyperT. She is not an avid internet user, and I am trying to find out all the info I can from the net for her. She doesn't have Hashimoto or TED. We are both 26 and want to have kids in the next 2-5 years. She has been on PTU for 1 year and finally decided to see an endo. He is suggesting RAI. I noticed that the people on this site are primarily ANTI-RAI. Why is that? Everything I read says that it is safe, is performed on 90% of Hypert/GD patients and has been used for over 35 years. We had questions about fertility, but the only problems with that are if you are pregnant when you receive the treatment. One year after t-ment, and the Thyroid is stabilized, it appears to be safe to have children. I've read all the negative opinions. I'd like to hear from some positive outcomes from the RAI. We are definitely taking our time on this and will not jump to conclusions. We picked up a book last night by M.Sara Rosenthal called The Thyroid Sourcebook, and it is very informative. Thanks for your advice, support, and welcoming us to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 So , allow me to play devil's advocate here. I mean no disrespect and please don't take it the wrong way, but isn't it possible that 30 years after your mother had RAI that the process has been refined and researched and proven useful? Also, how many other patients are there who had perfect results and don't bother to comment on this site because the RAI worked for them? I see that this group is 800 strong. Every year, hundreds of thousands are diagnosed with GD/Hyper and if 90% are treated with RAI, that means that the success ratio is very high. I am in no way downing this site, I'm glad my wife and I found it! But if a patient was diagnosed, treated with RAI with success, what reason would they have for participating in a group like this... they'd rather get on with their life. I know this sounds like I'm yelling as I type, but I'm not, I'm just playing the advocate to stir some discussion. Thank you for your time. Corey > Welcome Corey, > > I have not had RAI and after some extensive research I will not undergo > the procedure, ever. In my research I found that we are the only country > still treating Graves with RAI as the first treatment option. Many > people become hypo-thyroid after RAI and need to take replacement > thyroid hormone, forever. Being hypo can cause fertility problems on > it's own. Also, with the proper course of ATD (anti-thyroid drugs) many > people achieve remission! No pills, no health problems, just remission! > > Graves disease is actually an auto-immune disorder in which the immune > tricks the thyroid into producing too much hormone. The thyroid is the > victim in this disease, not the culprit. By taking the RAI your wife's > thyroid would be destroyed, no going back, no changing your mind later. > It is permanent and irreversible. In some people when the thyroid is > destroyed the slightest TED can go crazy! Even if your wife's eyes are > only a *little* bulging they could become much, much worse after RAI. > She may not have full blown TED right now, but she could after RAI. > > Once upon a time people used leeches to cure illness. At one point it > became apparent that there were other, better ways of treating > illnesses. That's kind of where RAI is right now. RAI will trade hyper > for hypo. You don't get " better " you merely get a new set of problems to > deal with. My own mother-in-law was treated with RAI over 30 years ago. > Since then she has developed many problems. She has battled depression, > can't lose weight, has very low energy and when she gets sick it takes > weeks for her to recover. It was not like that before RAI. She went from > being the type of mom who did everything with her kids to the type of > mom who *couldn't* do anything with her kids. After 30 years she still > has yet to find a suitable dosage of replacement thyroid hormone that > makes her feel good. When she does her doctor tells her that her thyroid > levels are too high and they reduce her dosage. > > There are many folks who have had children while on ATDs, usually PTU. > You say she's been on PTU for a year and is just now seeing the endo? > What tests have they been monitoring her with? Has she been getting > regular blood tests to show her free T3 and free T4 levels? Or has she > been monitored mostly on her TSH level? > > I know you were looking for " positive " RAI info but I just don't have > any. Right now I'm on a low dose of PTU hoping for remission, again. As > more research is done into Graves the more confident I am that someday > there will be a cure. I will still have my thyroid alive and well when > the cure comes along! > > in MA USA > Graves since March 1997 > Currently on 2 PTU tablets per day > Was in remission from 2000-2003 > Will not undergo RAI > > Anti-RAI > > Hey everyone. My wife has GD and HyperT. She is not an avid > internet user, and I am trying to find out all the info I can from > the net for her. She doesn't have Hashimoto or TED. We are both 26 > and want to have kids in the next 2-5 years. She has been on PTU for > 1 year and finally decided to see an endo. He is suggesting RAI. I > noticed that the people on this site are primarily ANTI-RAI. Why is > that? Everything I read says that it is safe, is performed on 90% of > Hypert/GD patients and has been used for over 35 years. We had > questions about fertility, but the only problems with that are if you > are pregnant when you receive the treatment. One year after t- ment, > and the Thyroid is stabilized, it appears to be safe to have > children. I've read all the negative opinions. I'd like to hear > from some positive outcomes from the RAI. We are definitely taking > our time on this and will not jump to conclusions. We picked up a > book last night by M.Sara Rosenthal called The Thyroid Sourcebook, > and it is very informative. Thanks for your advice, support, and > welcoming us to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Corey, maybe a good place to see how 'wonderful' RAI is for you to visit www.thyroid.about.com and ask the ladies who've had RAI and are now hypoT. Unfortunately the Endo's who treat those with Hypo are some of the same ones who give us the speech " you're a good candidate for RAI " . There are many many women over there who don't get the best possible drug after RAI to control feeling not so wonderful for their hypoT. Synthroid is the #1 recommended drug from what I've ready for Hypothyroidism, yet so many women don't feel optimal on just a synthetic drug that is only made of T4. And even better than that, somebody should post you a link to 's website to show what RAI did to her. If I had it, I'd post it for you. It's quite an eye opener of what can happen. Sandy~Houston On Mon, 25 Aug 2003 19:34:42 -0000 " Corey " wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Sandy, I've seen the " lisa site " and I'd like to state that she had TED prior to the RAI, so I don't think it's fair to say that the RAI did that to her, it only enhanced what she already had. My wife does not have TED. And I'd be willing to bet that is categorized as one the " worse-case-scenario " patients. Just trying to thoroughly debate the topic... Thank you for your input. corey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Corey, I've had trouble with blurred vision for quite some time. I was diagnosed with hyperT/graves at the end of 2001. The Endo I was referred to by my primary care physician is a good dr. I like him. Have no real complaints against him. Actually, when it all comes down to how Graves/hyperT is treated, RAI is the cheapest way to get the thyroid out of the way. I've never once been told by my Endo that I should have my eyes checked. Not once. I also have swelling around the eye area, although not bulgy eyes. My eyelids do swell on occasion. Originally I thought it was allergies. I'm not so sure now. AS soon as I went to see my Endo, the very first thing he said was he needed me to do an uptake scan, which would tell him if I did have graves or not. Now, almost 2 yrs later, I learn that the uptake test isn't even necessary to find out if Graves was the culprit. I was put on 30 mgs of methimazole, 50 mgs of Atenolol, then our insurance changed. I started looking for an Endo as the one I was using didn't take our insurance. I went to somebody that a co-worker suggested who I finally got an appt with. In two months when I finally got in to see him, he took a TSH, T3 and T4 test. Told me to continue on the meds as I had been. This was in March of 2002 when I first got in to see him. He told me that if I'd have RAI, he could see me every month, instead of every two months. Since he'd been so highly recommended, I assumed he knew what he was doing. I found out later, he had no clue, or my meds wouldn't have been stopped cold turkey which could have left me to deal with a thyroid storm. I was lucky, as it didn't happen. But, during the year 2002, from March to Dec of 2002, when my levels got near what he considered 'normal', he'd discontinue the meds. It would take less than 2 weeks and I had the same ugly symptoms and of course I'd call his office. I felt so bad it was hard to get up to drag myself to work after he took the meds away. I'm lucky I had a boss whose wife had thyroid cancer and he knew something about thyroid problems, or I'd have been without a job. (no kidding on that one). When I'd call the Dr's office, his nurse would ask me if he could call me back on thursday? When it's Monday, and I feel this badly, I don't think waiting till Thursday is gonna help me much at all. I ask her is there a specific reason I have to wait for 3 more days to be able to talk to him and get some off the wall excuse that he's seeing patients. lol. Then in all that brainfog I realize, heck, I'm his patient too, the one who keeps getting yo-yo'd off meds without having been on them for a full year? The least he can do is enlighten me with a good reason why we're doing this to begin with. He had no reason other than my levels were " normal " only he wasn't even testing my Free T3 and Free T4 to know how well I was doing. He was looking at my TSH which isn't giving him the info to sufficiently helping me. Then he decides I can have the meds back because the symptoms are back, only I feel worse now than I did in the beginning. He not one time adjusted those meds, which should have been adjusted within 6 - 8 weeks of my starting them. A maintenance dose that you'd finally work down to can be as low as 2.5 mgs of Methimazole and can be taken indefinately. Yet, in one solid year, I was being tested with the wrong tests, and having my meds withdrawn by an Endo's whim. Now, you might look at this post and say, wow, she just had an Endo who either didn't have the knowledge to handle a Graves/HyperT patient, or else she is a leaving something out. It wasn't until i got tired of being taken off and on the meds, which wasn't going to help me or anybody else who'd been done that way, that we changed insurance again. I was able to go back to my first Endo. When I told him what had happened and the time frames, he looked at me in total disbelief, then said, that is NOT the way anybody should do any hyperT patient. By this time, I've gotten copies of all my labs from Dr Dummie #2, and I've got the labs from Dr #1 who was always glad to provide them to me. Dr #2 was a completely different ballgame. His nurse finally sent me all my labs, and I sat down and made up a list of times, tests ran and charted it. Dr #2 started looking at my FT3 and FT4 levels, which were the correct tests to take, and adjusting the meds, which should have been adjusted one year earlier. I'm still on Methimazole, 5 mgs, and still on Atenolol for the heart palpitations as well as high blood pressure. I'm almost to two years on meds, but I do have a chance of going into remission now. I didn't stand a chance with DR#2. What I did when I started going to DR #2 was assume he knew what he was doing. These forums have shown me he didn't, along with looking back and just how hypoT DR Dummie #2 let me get. My point is, that while not all people have these things happen, and trust me, hypo wasn't anymore fun than hyperT. Elaine can explain this so much better, but.....killing off a thyroid because you have an autoimmune disease is not going to solve any problems. It's the cheapest way to deal with it in the medical world, but it's not the best. I've not seen that many people give glory to the world of RAI. I've also not heard that many people sing praises for being hypo either which comes with it's own set of problems, some that are like the hyperT, but I'm not an expert by any means. I can only speak for the things I've had happen to me and the things I've learned on these forums. I do have a friend who's up in the Dallas area who also had Graves/HyperT. She finally got such shabby treatment that she opted for RAI. Now, the real corker is, her dr didn't do another uptake test, before RAI. Guess what she now has? Uh huh, TED. She's been off work for about 7 weeks, and she's been so sick, cuz of Synthroid, which is only replacing T4, and no T3. She also missed classes that would have doubled her pay, because she is too sick to work. They've tried numerous meds, and nothing is working. She's now seeing a Opthamologist who is familiar with TED to try to get herself squared away with the eye problems. Now, you'd think in the real world, this couldn't happen, that a dr of any kind would put a patient through the problems that can come up that they are aware of, but it happened in March of 2003 as per our phone conversation. They all knew better, but they didn't do better. In the meantime she's sick, unable to work, and in her 30's. Has two young girls at home who've been taking care of most of the house stuff. They depend on her salary too, and now her hubby has to take off work to even take her into the eye dr for treatment. Now, like I said earlier, you may say, hmmm, she just has a personal vendetta against RAI. Maybe I do. I don't see how my ingesting something that keeps me from being able to visit my grandchildren and even doing something as simple as kissing them can put them in harms way. I was also told that I'd have to refrain from any bodily contact with my husband for 5 - 7 days afterwards as kissing and sex were out to keep him from being exposed to radiation that can cause him to have cancer. (each dr gives their speech and some are told for less days than what I was told so who knows?) Now, when you think about taking something like that going into your system, I have to ask myself this one last question. How can something like that be any good for me when it would be so easily passed onto somebody that I love and care about? Does it only go to my thyroid? I've read it also goes to the breasts and the female organs. I guess that pretty much made up my mind for me. Especially when I don't have to miss work, other than to go in every few months for a blood sample, can control my out of whack thyroid with a pill or a half a pill, along with something I'd be taking for my high blood pressure anyway and feel human again? And if Elaine is correct, most of us who find ourselves hyper were already hypoT before the hyperT sets in, which I can see now in retrospect. I'd even had my thyroid checked before, and I had the symptoms, but was never treated. I also gained weight and felt like a couch potato. The worst part is, those DR's who are truly good, many of them won't even accept insurance. And those same DR's that are treating us are the same ones that your wife can come into contact with. Without reading and learning before taking such a step, or even getting complacent like I did and just assuming that a Dr is smart and knows how to treat hyperT and hypoT can be a sad story for anyone. It's happening everywhere, and I'm betting there's not a city in any state that doesn't have similar stories. Whether you two decide on RAI is a personal decision. You have to weigh the good and the bad and see what you think will work best. There's lots of info out here from real people who are struggling with getting replaced what was taken away from them by RAI, and some who had surgery due to cancer. It's not an easy road, and I guess I tend to resent when it's made to sound like RAI is somehow a treatment that is what is going to work best. After all the hours I've spent reading, I have to ask myself just how much better is it? If you take away my T-0 - T7 (all those #'s in between) and give me T4 to replace all that, how likely is it I'm going to feel 100% afterwards? Lots of people don't unfortunately. :-( Now off my soapbox. lol. But I do understand your searching out for info. I think that is a very wise thing to do. I made one big mistake when I had this all happen to me, and that was that I just got too comfy letting a dr do things that shouldn't have been done. Others have had it worse I'm sure, but it still happens. :-) Sandy~Houston Original Message: ----------------- From: Corey cfink@... Date: Mon, 25 Aug 2003 19:57:02 -0000 To: graves_support Subject: Re: Anti-RAI <html><body> <tt> Sandy,<BR> <BR> I've seen the " lisa site " and I'd like to state that she had TED <BR> prior to the RAI, so I don't think it's fair to say that the RAI did <BR> that to her, it only enhanced what she already had. My wife does not <BR> have TED. And I'd be willing to bet that is categorized as one <BR> the " worse-case-scenario " patients. Just trying to thoroughly debate <BR> the topic... 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Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hi again Corey, I'm not offended at all. But, how is the 90% success rate defined? That is the key here. Yes, 90% of patients who undergo RAI will no longer be hyper-thyroid. That is a truth. That's how the " success " is defined. But, of that 90% that are no longer hyper-thyroid, how many of them are then sent into hypo-thyroid. That is the information you won't find at most places. I don't have exact number but I'd be willing to bet that of the 90% no longer hyper that 100% of them will be hypo. The dosage of RAI given is, like any medication, a calculated guess. There is no exact formula and your doctor simply guesses. Once you become hypo-thyroid you are then placed on replacement thyroid for the rest of your days. For me, combining the fact that I will have to take medication for the duration of my days here on earth and the chance I could develop TED makes me stay away from RAI. It was my mother-in-law who had the treatment and in her generation you didn't question your doctor and you did as you were told. She never complained because this is what the doctor told her was best for her. Now, she has started questioning what she was told was good for her. Both I, her daughter-in-law, and her son have Graves. Both of us are doing very, very well on ATDs. I was in remission until some big stressors in my life sent me back into active Graves again. But I am confident that with diet and ATDs I will once again be in remission. Like I said before, the thyroid is the victim in this disease. I can't reconcile in my mind killing off a healthy gland with a high dosage of radiation when there's a chance I'll see remission again. in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Re: Anti-RAI So , allow me to play devil's advocate here. I mean no disrespect and please don't take it the wrong way, but isn't it possible that 30 years after your mother had RAI that the process has been refined and researched and proven useful? Also, how many other patients are there who had perfect results and don't bother to comment on this site because the RAI worked for them? I see that this group is 800 strong. Every year, hundreds of thousands are diagnosed with GD/Hyper and if 90% are treated with RAI, that means that the success ratio is very high. I am in no way downing this site, I'm glad my wife and I found it! But if a patient was diagnosed, treated with RAI with success, what reason would they have for participating in a group like this... they'd rather get on with their life. I know this sounds like I'm yelling as I type, but I'm not, I'm just playing the advocate to stir some discussion. Thank you for your time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Corey, On the home page for the group in the Files section there's a useful one for you, titled " top 20 reasons not to have RAI " . It's well documented, and might give you a better understanding. You might also look at the link to some post RAI eye photos. they will " open your eyes " to the possibilities. You might also search the archives for posts from U, who post-RAI (at around your wife's age) has had miserable fertility problems. A book that will help is Graves Disease, a Practical Guide, by Elaine (who also responds to questions on this site, if you put he name in the subject line, btw). You are right, there are plenty of women out there who at least appear to have decent outcomes from RAI, so far as medical science is concerned. There are also a lot of women out there who go to the doctor complaining that they can't lose weight, have no energy, their joints ache, etc.--and get told it's no related to their thyroid. Or that they are fat because they pig out on food. Or mentally unstable and need antidepressants. Well, I've never had, nor will I ever have RAI. I'm a very happy and well-adjusted GD patient on a minimal dose of ATD's long-term. My mother had thyroid cancer before I was born, had a total thyroidectomy and probably radiation to follow up (she passed away from esophogeal cancer before I got GD, so I never knew to ask her). The more I understand about how the thyroid works, the more I realize her chronic illness, her lifelong misery and psychosis as well, were caused by lack of proper thyroid supplementation. If you kill the thyroid, you see, you're doomed to take synthetic (or pig) thyroid for the rest of your life. Many people have a hard time finding the " right " combination of hormone to actually feel good. The brutal fact is that most doctors don't seem to care about that. So if you want to take a 30% or more risk that the quality of your wife's life will be significantly impacted and reduced, push her to get RAI. If not (and I may be reading between lines here incorrectly, but it's my take on what you've said) let her make the decision to stay with ATD's. You will only have to live with her decision for the rest of your time together. She will have to suffer life in her body for the rest of her time on earth, and undoubtedly resent you for pushing her into the decision to get RAI if you do. Terry > > Reply-To: graves_support > Date: Mon, 25 Aug 2003 19:34:42 -0000 > To: graves_support > Subject: Re: Anti-RAI > > So , allow me to play devil's advocate here. I mean no > disrespect and please don't take it the wrong way, but isn't it > possible that 30 years after your mother had RAI that the process has > been refined and researched and proven useful? Also, how many other > patients are there who had perfect results and don't bother to > comment on this site because the RAI worked for them? I see that > this group is 800 strong. Every year, hundreds of thousands are > diagnosed with GD/Hyper and if 90% are treated with RAI, that means > that the success ratio is very high. I am in no way downing this > site, I'm glad my wife and I found it! But if a patient was > diagnosed, treated with RAI with success, what reason would they have > for participating in a group like this... they'd rather get on with > their life. I know this sounds like I'm yelling as I type, but I'm > not, I'm just playing the advocate to stir some discussion. Thank > you for your time. > > Corey > > >> Welcome Corey, >> >> I have not had RAI and after some extensive research I will not > undergo >> the procedure, ever. In my research I found that we are the only > country >> still treating Graves with RAI as the first treatment option. Many >> people become hypo-thyroid after RAI and need to take replacement >> thyroid hormone, forever. Being hypo can cause fertility problems on >> it's own. Also, with the proper course of ATD (anti-thyroid drugs) > many >> people achieve remission! No pills, no health problems, just > remission! >> >> Graves disease is actually an auto-immune disorder in which the > immune >> tricks the thyroid into producing too much hormone. The thyroid is > the >> victim in this disease, not the culprit. By taking the RAI your > wife's >> thyroid would be destroyed, no going back, no changing your mind > later. >> It is permanent and irreversible. In some people when the thyroid is >> destroyed the slightest TED can go crazy! Even if your wife's eyes > are >> only a *little* bulging they could become much, much worse after > RAI. >> She may not have full blown TED right now, but she could after RAI. >> >> Once upon a time people used leeches to cure illness. At one point > it >> became apparent that there were other, better ways of treating >> illnesses. That's kind of where RAI is right now. RAI will trade > hyper >> for hypo. You don't get " better " you merely get a new set of > problems to >> deal with. My own mother-in-law was treated with RAI over 30 years > ago. >> Since then she has developed many problems. She has battled > depression, >> can't lose weight, has very low energy and when she gets sick it > takes >> weeks for her to recover. It was not like that before RAI. She went > from >> being the type of mom who did everything with her kids to the type > of >> mom who *couldn't* do anything with her kids. After 30 years she > still >> has yet to find a suitable dosage of replacement thyroid hormone > that >> makes her feel good. When she does her doctor tells her that her > thyroid >> levels are too high and they reduce her dosage. >> >> There are many folks who have had children while on ATDs, usually > PTU. >> You say she's been on PTU for a year and is just now seeing the > endo? >> What tests have they been monitoring her with? Has she been getting >> regular blood tests to show her free T3 and free T4 levels? Or has > she >> been monitored mostly on her TSH level? >> >> I know you were looking for " positive " RAI info but I just don't > have >> any. Right now I'm on a low dose of PTU hoping for remission, > again. As >> more research is done into Graves the more confident I am that > someday >> there will be a cure. I will still have my thyroid alive and well > when >> the cure comes along! >> >> in MA USA >> Graves since March 1997 >> Currently on 2 PTU tablets per day >> Was in remission from 2000-2003 >> Will not undergo RAI >> >> Anti-RAI >> >> Hey everyone. My wife has GD and HyperT. She is not an avid >> internet user, and I am trying to find out all the info I can from >> the net for her. She doesn't have Hashimoto or TED. We are both > 26 >> and want to have kids in the next 2-5 years. She has been on PTU > for >> 1 year and finally decided to see an endo. He is suggesting RAI. > I >> noticed that the people on this site are primarily ANTI-RAI. Why > is >> that? Everything I read says that it is safe, is performed on 90% > of >> Hypert/GD patients and has been used for over 35 years. We had >> questions about fertility, but the only problems with that are if > you >> are pregnant when you receive the treatment. One year after t- > ment, >> and the Thyroid is stabilized, it appears to be safe to have >> children. I've read all the negative opinions. I'd like to hear >> from some positive outcomes from the RAI. We are definitely taking >> our time on this and will not jump to conclusions. We picked up a >> book last night by M.Sara Rosenthal called The Thyroid Sourcebook, >> and it is very informative. Thanks for your advice, support, and >> welcoming us to the group. > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hi Corey, I know you're looking for pro-RAI info, but in researching Graves' disease for the last decade, I haven't run across any successful cases 5 years or more post treatment. I hear from people who do fine within the first year or two but eventually they discover that the immune system defect that's exacerbated after RIA leads to other problems. In Europe and Japan, RAI is rarely used and with good reason. There are no studies showing how many people develop eye symptoms after RAI, but many studies show that there is a significant increase in congestive eye disease after RAI because of the increased thyroid antibody titers. Other common sequelae include fibromyalgia, pretibial myxedema, acropachy, and progressive thyroid failure. Once hypothyroidism develops, myxedema coma can set in within 6 weeks without thyroid replacement hormone. Your wife will have to decide the pros and cons of her treatment options, but it's important that she know that remission generally occurs within 12-18 months of using ATDs especially with the necessary lifestyle changes (iodine restriction, avoiding cigarette smoke, aspartame, etc), and most everyone achieves remission within several years. I'm not sure where your statistics came from but the use of RAI has gradually been declining in the U.S. as patients have become more involved in their health care. Best to you both, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 On Mon, 25 Aug 2003 19:34:42 -0000 " Corey " writes: > So , allow me to play devil's advocate here. I mean no > disrespect and please don't take it the wrong way, but isn't it > possible that 30 years after your mother had RAI that the process > has > been refined and researched and proven useful? Actually, in the decades since RAI has been practiced the refinements have only been negative. It used to be that doctors would stabilize patients with ATDs first to reduce the risk of thyroid storm; now they say it's just necessary for the elderly. Also, and I don't have info on this but the first person who brought this up to me is someone I trust alot, it seems doctors used to more carefully calibrate the dose of RAI so the patient wouldn't necessarily go hypo, or as drastically hypo. It bears looking into if you want to compare. I'll bet the quarantine time was different too - inpatient hospitalization, but that's just my hunch which might well be wrong. I'm curious about her experience on PTU for a year. Pardon the barrage of questions and feel free not to answer them, but you'll see where I'm going. What dose did she start at? Did she take it 3x a day? Did she have bloodwork at no more than 2 month intervals, and based on the bloodwork, was her dose steadily lowered in small increments? What was the bloodwork her dosing was based on - free or total T4? If any of these doesn't compute, it's possible she didn't have a fair trial of PTU. I said this recently and will iterate - I am not advocating RAI. But anyone who is contemplating RAI needs to do research that may take a few weeks for it all to sink in, and most endos don't seem to give the patient the time they need; they'll schedule the RAI within a day or two of the RAI-U and that is painfully unfair !!! RAI will inevitably make a patient hypo. It'll also quite likely exacerbate pre-existing TED as well as somewhat increase the risk of developing it. (Oh, and BTW, while people do develop TED before RAI, ATDs can have a palliative effect on the antibodies causing TED which will help in treatment.). SO, anyone contemplating RAI had better have a top notch endo lined up, someone who is very skilled and conversant in all the thyroid hormone supplements and necessary bloodwork. Personally, I'm grateful to have been given the motivation to give ATDs a chance and am in remission for two years after 14 months on Tapazole. Take care, Fay P.S. I was thinking about my response to Michele - you may have noticed mine and others. I feel bad if I came off sounding, well, bossy ( " If, when you call to cancel your RAI... " ). ly though, we are all giving the best advice we can. On line, as opposed to in person, I for one might sound a bit in-your-face which no one who knows me personally would ever accuse me of but that might be due to the immediacy of the situation. We all support any choice anyone makes. Often people come here after being rushed into RAI and I can't imagine how painful it is to get the education they should have got before. But it's good they're here because they also get support and very practical advice. ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 , Very interesting post. I just heard from my doc that I have some lid lag so the presence of GO. I read on a Web site: >Long Term Management >Once treated, or when the eyes have " burnt out " without treatment, the eye >inflammation rarely reoccurs and treatment need not be continued. Patients who >have not had thyroid disease previously must be examined on a regular basis in >case they develop thyroid disease. Patients with eye disease who have had their >hyperthyroidism treated previously should also be examined at regular intervals >to make certain that thyroid function remains normal since recurrence of >hyperthyroidism, or development of hypothyroidism, may cause the eye disease >to flare up. I was thinking of just buying my .38 caliber early in case of a flare up (and I still might! haha) but now I wonder if people with the worst eye disease actually get better at some point. Did you? Jae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Terry, I'm not pushing my wife to get the RAI, but she's been on PTU for a year and the endo says that this is the way to go. So I am exhausting all reason why or why not to have the procedure. I've read all the files, the top 20, looked at the links menu and seen the bulging eyes. It's all very unfortunate and I do not want my wife to suffer. When I put that ring on 4 years ago, we were no longer two people... so whatever happens to her, happens to me. I believe that the thyroidectomy is just as bad as the RAI, though. Just as many risks (I mean it's surgery!), she would go Hypo-, she would have to take supplementals, possible damage to para-thyroid glands, vocal chords, etc. So both of those avenues seem doomed. So what should we do? Stay on PTU for the rest of her life? She's not " normal " as far as her Thyroid levels go... her heart rate has slowed from 200 resting beats to 80, her weight loss has stopped, her hair is normal, her eyes are not bulging but get dry and itchy and she can't see well when driving at night. She gets very emotional easily and stressed out quickly too. Now she is having joint pain. I think that 'ablating' the thyroid might be necessary and the Endo definitely thinks it's necessary. I do know that we will seek a second opinion before making a final decision, due to the seriousness of the treatments. I will also look into Elaine 's book. Thank you for your comments. Corey > >> Welcome Corey, > >> > >> I have not had RAI and after some extensive research I will not > > undergo > >> the procedure, ever. In my research I found that we are the only > > country > >> still treating Graves with RAI as the first treatment option. Many > >> people become hypo-thyroid after RAI and need to take replacement > >> thyroid hormone, forever. Being hypo can cause fertility problems on > >> it's own. Also, with the proper course of ATD (anti-thyroid drugs) > > many > >> people achieve remission! No pills, no health problems, just > > remission! > >> > >> Graves disease is actually an auto-immune disorder in which the > > immune > >> tricks the thyroid into producing too much hormone. The thyroid is > > the > >> victim in this disease, not the culprit. By taking the RAI your > > wife's > >> thyroid would be destroyed, no going back, no changing your mind > > later. > >> It is permanent and irreversible. In some people when the thyroid is > >> destroyed the slightest TED can go crazy! Even if your wife's eyes > > are > >> only a *little* bulging they could become much, much worse after > > RAI. > >> She may not have full blown TED right now, but she could after RAI. > >> > >> Once upon a time people used leeches to cure illness. At one point > > it > >> became apparent that there were other, better ways of treating > >> illnesses. That's kind of where RAI is right now. RAI will trade > > hyper > >> for hypo. You don't get " better " you merely get a new set of > > problems to > >> deal with. My own mother-in-law was treated with RAI over 30 years > > ago. > >> Since then she has developed many problems. She has battled > > depression, > >> can't lose weight, has very low energy and when she gets sick it > > takes > >> weeks for her to recover. It was not like that before RAI. She went > > from > >> being the type of mom who did everything with her kids to the type > > of > >> mom who *couldn't* do anything with her kids. After 30 years she > > still > >> has yet to find a suitable dosage of replacement thyroid hormone > > that > >> makes her feel good. When she does her doctor tells her that her > > thyroid > >> levels are too high and they reduce her dosage. > >> > >> There are many folks who have had children while on ATDs, usually > > PTU. > >> You say she's been on PTU for a year and is just now seeing the > > endo? > >> What tests have they been monitoring her with? Has she been getting > >> regular blood tests to show her free T3 and free T4 levels? Or has > > she > >> been monitored mostly on her TSH level? > >> > >> I know you were looking for " positive " RAI info but I just don't > > have > >> any. Right now I'm on a low dose of PTU hoping for remission, > > again. As > >> more research is done into Graves the more confident I am that > > someday > >> there will be a cure. I will still have my thyroid alive and well > > when > >> the cure comes along! > >> > >> in MA USA > >> Graves since March 1997 > >> Currently on 2 PTU tablets per day > >> Was in remission from 2000-2003 > >> Will not undergo RAI > >> > >> Anti-RAI > >> > >> Hey everyone. My wife has GD and HyperT. She is not an avid > >> internet user, and I am trying to find out all the info I can from > >> the net for her. She doesn't have Hashimoto or TED. We are both > > 26 > >> and want to have kids in the next 2-5 years. She has been on PTU > > for > >> 1 year and finally decided to see an endo. He is suggesting RAI. > > I > >> noticed that the people on this site are primarily ANTI-RAI. Why > > is > >> that? Everything I read says that it is safe, is performed on 90% > > of > >> Hypert/GD patients and has been used for over 35 years. We had > >> questions about fertility, but the only problems with that are if > > you > >> are pregnant when you receive the treatment. One year after t- > > ment, > >> and the Thyroid is stabilized, it appears to be safe to have > >> children. I've read all the negative opinions. I'd like to hear > >> from some positive outcomes from the RAI. We are definitely taking > >> our time on this and will not jump to conclusions. We picked up a > >> book last night by M.Sara Rosenthal called The Thyroid Sourcebook, > >> and it is very informative. Thanks for your advice, support, and > >> welcoming us to the group. > > > > > > > > ------------------------------------- > > The Graves' list is intended for informational purposes only and is not > > intended to replace expert medical care. > > Please consult your doctor before changing or trying new treatments. > > ---------------------------------------- > > DISCLAIMER > > > > Advertisments placed on this yahoo groups list do not have the endorsement of > > the listowner. I have no input as to what ads are attached to emails. > > ------------------------------------------------------------------ ------------ > > -------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Corey - I suspect that you're looking into RAI because it does seem like the " quick and easy " solution. Certainly most doctors make it sound that way. ATD have to be taken several times a day and it can be a real drag taking all those pills. RAI sounds so " easy " in comparison. However, instead of taking ATDs, after a person has RAI they'll be taking replacement thyroid hormone instead. Some people do OK with just replacement T4 (like Synthroid). A lot of people don't. After RAI a significant number of people have trouble converting T4 to T3, so they feel terrible until they also add replacement T3, which is the more potent of the thyroid hormones. However, T3 has a short half life and usually is taken multiple times a day also. So now you're still back to several pills a day just to feel " normal " . I believe the more reliable statistic is that 33% of people who have RAI will experience some problem with it. Whether that problem is TED (either new or worsened), problems with replacement hormone dosage, trouble converting T4 to T3, fertility issues, whatever. So some people do OK after RAI. Some people also lingering problems but are told that it isn't thyroid related, when in fact it is. So it's very hard to quantify a good statistic on how many people are fine after RAI. The problem is that it's a complete crap shoot. There is no way to predict who is going to do well after RAI and who isn't. Some problems can be predicted, like if you have some TED, you will likely have worse TED after RAI. But there is no way to predict if a person without TED will develop it after RAI. You don't know if you're one of the lucky ones who is going to feel fine after RAI or one of the unlucky ones until after it's over and it's too late. Then you're stuck. Something also to consider that isn't usually discussed by the doctor when talking about RAI is that the radioactive iodine isn't just absorbed by the thyroid. It's absorbed by other organs as well, such as instestines, liver, kidneys, reporductive organs, etc. So those organs are going to get some dose of the RAI as well. And there aren't a whole lot of studies on what that does long term, say like 20 - 30 years down the road. And since you and your wife are relatively young, that's a big concern. I was 31 when diagnosed and that was one of the reasons why I decided against RAI. Because there aren't too many long term studies on it's affects years later. There is one medical journal article that I foudn that is about 10 years old that did do some research into long term effects. And there are some increased risks of cancer of other organs after RAI. So it is something to take into consideration. It's not an easy decision. Another thing to mention is that RAI is NOT the first choice of treatment in Japan and European countries for women of child bearing years. There are a lot of things to weigh and unfortunately, patients aren't given all of the information by their doctors on this important decision. Usually the picture that is painted is very rosy when in fact, the outcome can be anything but. Take a look at old posts from I. She also had RAI at about your wife's age and people have mentioned that she has battled infertility since. Her husband is a physician and has said that knowing what they do now, they would have never decided on RAI. I believe he has also said that he would have advised it for Graves' patients, but having lived with it's after effects first hand, he would no longer advise it so lightly. Good luck with the decision! Remember that especially since you're so young, you're not just looking at the short term benefits, but you need to keep in mind the long term picture as well. Anti-RAI > > > > Hey everyone. My wife has GD and HyperT. She is not an avid > > internet user, and I am trying to find out all the info I can from > > the net for her. She doesn't have Hashimoto or TED. We are both > 26 > > and want to have kids in the next 2-5 years. She has been on PTU > for > > 1 year and finally decided to see an endo. He is suggesting RAI. > I > > noticed that the people on this site are primarily ANTI-RAI. Why > is > > that? Everything I read says that it is safe, is performed on 90% > of > > Hypert/GD patients and has been used for over 35 years. We had > > questions about fertility, but the only problems with that are if > you > > are pregnant when you receive the treatment. One year after t- > ment, > > and the Thyroid is stabilized, it appears to be safe to have > > children. I've read all the negative opinions. I'd like to hear > > from some positive outcomes from the RAI. We are definitely taking > > our time on this and will not jump to conclusions. We picked up a > > book last night by M.Sara Rosenthal called The Thyroid Sourcebook, > > and it is very informative. Thanks for your advice, support, and > > welcoming us to the group. > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Hi again Corey, The dry itchy eyes is a mils eye involvement, or minor TED. I have it too, just dryness mostly. I also wear contact lenses, so I don't help myself much there. Do you have any copies of the lab work the doctors have been using to monitor your wife? The first endo I went to made me so mad I only saw him twice. I then went to my primary care doctor and asked them to treat me with ATDs, which they did. They were only going by the THS level though and I was over-medicated. TSH isn't even a thyroid hormone, it's a pituitary hormone that is supposed to regulate the level of thyroid hormone your body produces. I was actually made hypo thyroid for a couple of years and it was horrible! I had the worse muscle cramps all the time in my neck and shoulders. I was very emotional and had trouble dealing with anything. I also had many panic attacks because I felt so unable to deal with anything stressful. My TSH has never returned to " normal " even though my free T3 and free T4 numbers have been good. Right now I'm on two PTU tablets per day. The endo I have now is learning from me as she treats me. I like her a lot and she's been a partner in my health care the last year. Most endos really aren't bad doctors rather they are simply not well informed. The majority of their patients are diabetics, not thyroid related. My take is they simply just aren't well educated in thyroid autoimmune disease. I can well understand that you want what is best for your wife and her health. But before making any final decisions I would first wonder what exactly are her ATD doses being based on? Are they monitoring her free thyroid levels (which is the true measurement of what active thyroid hormone is available for use to her body) or is she being monitored mostly on her TSH level. Corey I can't stress enough that you need to get copies of all her labwork and find exactly how she is being monitored. If her doctor has been basing her dosage on TSH levels then it is no wonder she still feels " wrong " . Basing ATD dosage on TSH or total T4 just isn't the best way to go. I'm not saying RAI is never an option, but it should be a last resort. You really need to get copies of your wife's labs and see what really going on. My first endo recommended RAI to me my first visit. I don't have TED but my eyes are a bit involved. They get tired easy, scratchy and red and in the past were a bit bulgy. Based on that and the fact that my TSI (thyroid stimulating antibodies) were through the roof at the time meant I had an excellent chance of worsening TED after RAI. Not once was it even mentioned that something like that could go wrong. The word remission was never mentioned to me either. The fact that I would be on medication the rest of my life was glossed over quickly. I said I'd think about it and left. I had to do a ton of research on my own but am glad I did. I went to my next appointment armed with a ton of information. I asked questions about remission, and was then told that many patients will go into remission after a course of ATDs. First I had heard of that! Then I asked about worsening TED and he said that there was a good possibility it could happen to me. Gee, he didn't mention it last visit. Then I asked about replacement hormone and being hyper-thyroid. I was told the goal WAS to be hypo-thyroid and then take synthetic hormone. None of this was told to me until I asked the questions point blank. Get copies of your wife's lab results! Hare the tests and numbers with us here. We're good at reading labs now and we an honestly help you translate them. I think until you know what exactly is going on you shouldn't even be contemplating RAI yet. in MA, USA Diagnosed w/Graves, March 1997 Glad I've refused RAI Treatment!!! On lose dose of PTU (2 50 mg. per day) (was in remission for three years 2000-2003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2003 Report Share Posted August 25, 2003 Just saw your newest post. If she's having joint pain, that may be an indication that she needs a dosage reduction because she's actually hypo. Joint pain is a big hypo symptom. Has her doctor been doing regular Free T4 and Free T3 testing? Acutally, thyroidectomy isn't as bad as it first seems. I freaked at the idea when I first learned of it (surgery after all! Exactly!) But upon doing more research, if I am faced with the decision again, I am seriously considering it. The advantage that surgery has over RAI is that RAI will actually increase production of the antibodies that are responsible for the underlying autoimmune disease at first. This is what usually causes the exacerbation of TED symptoms and can bring on TED when none was present before. However, surgery removes most of the thyroid and the antibodies that are atatcking it. Now, some antibodies are certainly left, but they are fewer and there is little or no thyroid tissue left to attack, so the antibody levels are reduced, instead of increased as in RAI. It is likely she would have to have thyroid replacement if she had surgery. Some people who have a partial thyroidectomy can still make enough thyroid hormone with the remaining tissue that they don't need to. The other good thing about a partial thyroidectomy is that you still have some residual tissue that is making the thyroid hormones T2, T1, and T0, which can't be duplicated synthetically at this time. We don't even understand what these hormones do, much less can duplicate them. The risks for surgery (such as parathyroid damage and vocal chord damage) are very minimal with a competent surgeon (i.e. one who performs thyroidectomies routinely). I have an aunt who had a total thyroidectomy in the 1960's (why, it was pratically caveman surgery then, wasn't it?) and went on to live a very full and vibrant life. I had met her mutiple times and had no idea that she had had Graves' and surgery until I myself was diagnosed. Couldn't even see her scar. Blew my mind. I would have never guessed. The other trouble with RAI is that is kills the thyroid tissue over time. Unlike surgery, where the thyroid is removed and replacement hormone is started right after (assuming a total thyroidectomy). Since RAI kills it over time (and it can take up to 10 years to finally die out), the replacement hormone dosage needs will change. She may start out at one dose, but then months later, it need to be changed again. And so on for years. So it is still going to require monitoring to make sure she has the correct dosage to make her feel good. This is also something the doctors usually don't tell you. Another thing to keep in mind is that most doctors and endo will tell you that the maximum time that a person should be on ATDs is 12-18 months. So after that time, they start pushing other options (like RAI). Not really sure why this is so. There isn't really any conclusive medical reason for this idea. Suspicions are because it takes more time and effort for the doctor to monitor a person on ATDs. We have several members here who have been on ATDs for years with no ill effects. Over on http://www.mediboard.com/cgi-local/ubbcgi/ultimatebb.cgi?ubb=forum;f=1;DaysP rune=1000, which is another Graves' disease group, Granny has been on ATDs for 20+ years. No ill effects from them. If she has dry itchy eyes and increased night vision trouble, those ARE early symptoms of TED. I have them as well and my optho said those are beginning symptoms. I would be very wary of having RAI if this was the case. Second opinion sounds like a good idea. Likely you will be told the same thing, but try approaching from a different viewpoint and ask if there is any real problem with staying on ATDs (at the correct dose determined by Free T4 and Free T3 tests). Also ask for a TSI (thyroid stimulating immunoglobulins) test. These are the antibodies which are causing the Graves'. For most labs, the normal range is < 125%. This test could be an indicator of whether she is approaching remission. < 2% would be indicative of remission and a slow withdrawl of the ATDs. It would be interesting to know what this level was after being on the ATDs for a year. (That's another point - ATDs do reduce the antibodies - RAI does NOT!) Anti-RAI > > >> > > >> Hey everyone. My wife has GD and HyperT. She is not an avid > > >> internet user, and I am trying to find out all the info I can > from > > >> the net for her. She doesn't have Hashimoto or TED. We are both > > > 26 > > >> and want to have kids in the next 2-5 years. She has been on PTU > > > for > > >> 1 year and finally decided to see an endo. He is suggesting RAI. > > > I > > >> noticed that the people on this site are primarily ANTI-RAI. Why > > > is > > >> that? Everything I read says that it is safe, is performed on > 90% > > > of > > >> Hypert/GD patients and has been used for over 35 years. We had > > >> questions about fertility, but the only problems with that are if > > > you > > >> are pregnant when you receive the treatment. One year after t- > > > ment, > > >> and the Thyroid is stabilized, it appears to be safe to have > > >> children. I've read all the negative opinions. I'd like to hear > > >> from some positive outcomes from the RAI. We are definitely > taking > > >> our time on this and will not jump to conclusions. We picked up > a > > >> book last night by M.Sara Rosenthal called The Thyroid > Sourcebook, > > >> and it is very informative. Thanks for your advice, support, and > > >> welcoming us to the group. > > > > > > > > > > > > ------------------------------------- > > > The Graves' list is intended for informational purposes only and > is not > > > intended to replace expert medical care. > > > Please consult your doctor before changing or trying new > treatments. > > > ---------------------------------------- > > > DISCLAIMER > > > > > > Advertisments placed on this yahoo groups list do not have the > endorsement of > > > the listowner. I have no input as to what ads are attached to > emails. > > > ------------------------------------------------------------------ > ------------ > > > -------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2003 Report Share Posted August 26, 2003 > Take a look at old posts from I. She also had RAI at about > your wife's > age and people have mentioned that she has battled infertility > since. Her > husband is a physician and has said that knowing what they do now, > they > would have never decided on RAI. Do you mean U.? The posts on this thread have really been excellent (the one referred to here well included). Wonder if they should have their own file on the homepage. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi all: Just a reminder that the RAI question is highly controversial (at least on this list and among some doctors now) and we should keep the discussion polite and respectful -- as it has been! I've been impressed by how people are able to question and disagree on this topic without getting hostile. Let's sustain that tone!! And thanks to all for their restraint and politeness, makes my job easier! Best wishes! Quote Link to comment Share on other sites More sharing options...
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