Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, Research your choices carefully and decide what's best for you and your situation. One thing to consider is that with RAI, it's permanent. If you decide it was the wrong decision, you can't change things. If you continue with ATDs, you may achieve remission before you become pregnant and side effects won't be a concern. But even if you achieve remission, you can have a relapse later on so you can end up on meds at some point in the future. Only a minority of patients relapse after remission, but it's always a possibility. Unfortunately, there are no perfect treatment options or ways to predict exactly what your disease course will be. About 20% of people with GD eventually become hypothyroid even without treatment. This is where antibody tests come in helpful though. If you opt to go on meds again, it's important to make sure your TSI level has declined to normal (since TSI are the antibodies that cause hyperthyroidism in GD) before discontinuing meds. Also, don't feel pressured or rushed into deciding. Graves' disease itself can make us feel impatient. Don't let that influence your decision. We're all here to support you whatever you decide is best for you. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, Research your choices carefully and decide what's best for you and your situation. One thing to consider is that with RAI, it's permanent. If you decide it was the wrong decision, you can't change things. If you continue with ATDs, you may achieve remission before you become pregnant and side effects won't be a concern. But even if you achieve remission, you can have a relapse later on so you can end up on meds at some point in the future. Only a minority of patients relapse after remission, but it's always a possibility. Unfortunately, there are no perfect treatment options or ways to predict exactly what your disease course will be. About 20% of people with GD eventually become hypothyroid even without treatment. This is where antibody tests come in helpful though. If you opt to go on meds again, it's important to make sure your TSI level has declined to normal (since TSI are the antibodies that cause hyperthyroidism in GD) before discontinuing meds. Also, don't feel pressured or rushed into deciding. Graves' disease itself can make us feel impatient. Don't let that influence your decision. We're all here to support you whatever you decide is best for you. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, Research your choices carefully and decide what's best for you and your situation. One thing to consider is that with RAI, it's permanent. If you decide it was the wrong decision, you can't change things. If you continue with ATDs, you may achieve remission before you become pregnant and side effects won't be a concern. But even if you achieve remission, you can have a relapse later on so you can end up on meds at some point in the future. Only a minority of patients relapse after remission, but it's always a possibility. Unfortunately, there are no perfect treatment options or ways to predict exactly what your disease course will be. About 20% of people with GD eventually become hypothyroid even without treatment. This is where antibody tests come in helpful though. If you opt to go on meds again, it's important to make sure your TSI level has declined to normal (since TSI are the antibodies that cause hyperthyroidism in GD) before discontinuing meds. Also, don't feel pressured or rushed into deciding. Graves' disease itself can make us feel impatient. Don't let that influence your decision. We're all here to support you whatever you decide is best for you. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, I sent a post, that is lost somewhere in cyberland... but now that I see your dose...5 1/2 mg.......in my experience that amount would be a six month reduction. NOT stopping it, and proving once again, that abrupt withdrawal will cause hyper to come back. <sigh> Don't let them do this to you ! Any good doctor has read the same studies we all have, and should NOT be surprised that this is happening to you ! When you get my first post to you, this one will make more sense. LOL :-) -Pam- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, I sent a post, that is lost somewhere in cyberland... but now that I see your dose...5 1/2 mg.......in my experience that amount would be a six month reduction. NOT stopping it, and proving once again, that abrupt withdrawal will cause hyper to come back. <sigh> Don't let them do this to you ! Any good doctor has read the same studies we all have, and should NOT be surprised that this is happening to you ! When you get my first post to you, this one will make more sense. LOL :-) -Pam- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Anne, I sent a post, that is lost somewhere in cyberland... but now that I see your dose...5 1/2 mg.......in my experience that amount would be a six month reduction. NOT stopping it, and proving once again, that abrupt withdrawal will cause hyper to come back. <sigh> Don't let them do this to you ! Any good doctor has read the same studies we all have, and should NOT be surprised that this is happening to you ! When you get my first post to you, this one will make more sense. LOL :-) -Pam- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Anne - Have you given any thought to thyroidectomy? I don't know if you doc has given you any reason for it not being OK for you personally or not. I immediately rejected it as an option when I was first diagnosed, but the more I read about it ad all my other options, I began to warm up to it. If I am faced with having to do treatment again, I will likely have the thyroidectomy. If you look in the archives here for thyroidectomy, you should find Caroline's story - posted under the name . She had it done and gave a very good detailed explanation of the procedure and how it went for her. She has not had any fertility problems afterward - she's expecting her second child! Whereas RAI may cause infertility issues. You can also look in the archives for U.'s story. She had RAI in her 20's and has had fertility problems since. I have personally known 2 people who have had a thyroidectomy and had no problems of any kind afterward. One has hers in the 60's and almost 40 years later has had no regrets. It seems that the main difference is that in RAI, the thyroid dies off slowly over a period of years. Which means you can be faced with more dips into hypo hell, more dosage changes in your replacement hormone levels and you've no doubt seen the list of other problems people can have with RAI. When you have a thyroidectomy (assuming it's a total, you can get a sub-total - that's a another whole decision) you almost immediately start on replacement hormone. If you are worried about becoming pregnant and possible birth defects, have you considered switching to PTU? I don't remember if you have tried it or not. PTU does not cross the placental barrier, so does not have the risks that Tap has. There are also several stories in the archives from Debbie and I. who have had successful pregnancies while on PTU. Another option to consider is you were already on a pretty low dose of Tap it seems. Instead of quitting it " cold turkey " , have you tried weaning off of it slowly? Pam (posts under almostcrazy) recently weaned off her low dose ATD. She has also used supplements and the herb bugleweed to help her achieve this. Check out her story in the archives as well. There are still lots of things you can try. Just don't feel pressured to do RAI just because your doc thinks you should do it. It's your decision and you are the one who has to live with it literally. Good luck and don't be afraid to cancel the RAI appointment if you're still not sure about it. RAI Dilemma >I am really having a dilemma about whether or not to have RAI. > >On the one hand, I've gotten so many informative, supportive emails >from posters who have weighed in against RAI. Then, I have my doctor >who is kind and understanding but who believes I should do RAI sooner >rather than later. > >I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled >my GD well. I went to this dr. and expressed my concern about Tap and >it's negative side effects such as causing birth defects, etc. > >He told me to try 2mos. off of tap which I did and I went high again. >Now, I'm scheduled for RAI and am having 2nd thoughts. > > > >------------------------------------- >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 does 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 April 12, 2002 Report Share Posted April 12, 2002 Anne - Have you given any thought to thyroidectomy? I don't know if you doc has given you any reason for it not being OK for you personally or not. I immediately rejected it as an option when I was first diagnosed, but the more I read about it ad all my other options, I began to warm up to it. If I am faced with having to do treatment again, I will likely have the thyroidectomy. If you look in the archives here for thyroidectomy, you should find Caroline's story - posted under the name . She had it done and gave a very good detailed explanation of the procedure and how it went for her. She has not had any fertility problems afterward - she's expecting her second child! Whereas RAI may cause infertility issues. You can also look in the archives for U.'s story. She had RAI in her 20's and has had fertility problems since. I have personally known 2 people who have had a thyroidectomy and had no problems of any kind afterward. One has hers in the 60's and almost 40 years later has had no regrets. It seems that the main difference is that in RAI, the thyroid dies off slowly over a period of years. Which means you can be faced with more dips into hypo hell, more dosage changes in your replacement hormone levels and you've no doubt seen the list of other problems people can have with RAI. When you have a thyroidectomy (assuming it's a total, you can get a sub-total - that's a another whole decision) you almost immediately start on replacement hormone. If you are worried about becoming pregnant and possible birth defects, have you considered switching to PTU? I don't remember if you have tried it or not. PTU does not cross the placental barrier, so does not have the risks that Tap has. There are also several stories in the archives from Debbie and I. who have had successful pregnancies while on PTU. Another option to consider is you were already on a pretty low dose of Tap it seems. Instead of quitting it " cold turkey " , have you tried weaning off of it slowly? Pam (posts under almostcrazy) recently weaned off her low dose ATD. She has also used supplements and the herb bugleweed to help her achieve this. Check out her story in the archives as well. There are still lots of things you can try. Just don't feel pressured to do RAI just because your doc thinks you should do it. It's your decision and you are the one who has to live with it literally. Good luck and don't be afraid to cancel the RAI appointment if you're still not sure about it. RAI Dilemma >I am really having a dilemma about whether or not to have RAI. > >On the one hand, I've gotten so many informative, supportive emails >from posters who have weighed in against RAI. Then, I have my doctor >who is kind and understanding but who believes I should do RAI sooner >rather than later. > >I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled >my GD well. I went to this dr. and expressed my concern about Tap and >it's negative side effects such as causing birth defects, etc. > >He told me to try 2mos. off of tap which I did and I went high again. >Now, I'm scheduled for RAI and am having 2nd thoughts. > > > >------------------------------------- >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 does 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 April 12, 2002 Report Share Posted April 12, 2002 There are a lot of posts about ATD's and pregnancy, most of the time when one wants to get pregnant the ATD PTU is used, which doesn't cross the placenta like Tapazole. There are a number of mothers in this group who have had successful pregnancies on PTU and healthy babies. I'm sure they'll chime in. As one of the most vocal anti-RAI people here (who has NOT had it), I would suggest you try other options and never have it. Caroline (posts under ) decided on a sub-total thyroidectomy, rather than RAI, and is pregnant with baby #2 since it was done. I know it's hard to weigh the options. Terry > > Reply-To: graves_support > Date: Fri, 12 Apr 2002 19:51:08 -0000 > To: graves_support > Subject: RAI Dilemma > > I am really having a dilemma about whether or not to have RAI. > > On the one hand, I've gotten so many informative, supportive emails > from posters who have weighed in against RAI. Then, I have my doctor > who is kind and understanding but who believes I should do RAI sooner > rather than later. > > I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled > my GD well. I went to this dr. and expressed my concern about Tap and > it's negative side effects such as causing birth defects, etc. > > He told me to try 2mos. off of tap which I did and I went high again. > Now, I'm scheduled for RAI and am having 2nd thoughts. > > > > ------------------------------------- > 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 does 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 April 12, 2002 Report Share Posted April 12, 2002 There are a lot of posts about ATD's and pregnancy, most of the time when one wants to get pregnant the ATD PTU is used, which doesn't cross the placenta like Tapazole. There are a number of mothers in this group who have had successful pregnancies on PTU and healthy babies. I'm sure they'll chime in. As one of the most vocal anti-RAI people here (who has NOT had it), I would suggest you try other options and never have it. Caroline (posts under ) decided on a sub-total thyroidectomy, rather than RAI, and is pregnant with baby #2 since it was done. I know it's hard to weigh the options. Terry > > Reply-To: graves_support > Date: Fri, 12 Apr 2002 19:51:08 -0000 > To: graves_support > Subject: RAI Dilemma > > I am really having a dilemma about whether or not to have RAI. > > On the one hand, I've gotten so many informative, supportive emails > from posters who have weighed in against RAI. Then, I have my doctor > who is kind and understanding but who believes I should do RAI sooner > rather than later. > > I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled > my GD well. I went to this dr. and expressed my concern about Tap and > it's negative side effects such as causing birth defects, etc. > > He told me to try 2mos. off of tap which I did and I went high again. > Now, I'm scheduled for RAI and am having 2nd thoughts. > > > > ------------------------------------- > 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 does 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 April 12, 2002 Report Share Posted April 12, 2002 There are a lot of posts about ATD's and pregnancy, most of the time when one wants to get pregnant the ATD PTU is used, which doesn't cross the placenta like Tapazole. There are a number of mothers in this group who have had successful pregnancies on PTU and healthy babies. I'm sure they'll chime in. As one of the most vocal anti-RAI people here (who has NOT had it), I would suggest you try other options and never have it. Caroline (posts under ) decided on a sub-total thyroidectomy, rather than RAI, and is pregnant with baby #2 since it was done. I know it's hard to weigh the options. Terry > > Reply-To: graves_support > Date: Fri, 12 Apr 2002 19:51:08 -0000 > To: graves_support > Subject: RAI Dilemma > > I am really having a dilemma about whether or not to have RAI. > > On the one hand, I've gotten so many informative, supportive emails > from posters who have weighed in against RAI. Then, I have my doctor > who is kind and understanding but who believes I should do RAI sooner > rather than later. > > I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled > my GD well. I went to this dr. and expressed my concern about Tap and > it's negative side effects such as causing birth defects, etc. > > He told me to try 2mos. off of tap which I did and I went high again. > Now, I'm scheduled for RAI and am having 2nd thoughts. > > > > ------------------------------------- > 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 does 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 April 12, 2002 Report Share Posted April 12, 2002 Hi Again Anne, The fact that you are having second thougths about having the RAI, is usually and indication that you are not ready to do it or anything else your having second thoughts about. It is never to late to NOT do RAI until you have swallowed that radiactive pill or cocktail. Once you have swallowed it, there is no going back. Take care, Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Again Anne, The fact that you are having second thougths about having the RAI, is usually and indication that you are not ready to do it or anything else your having second thoughts about. It is never to late to NOT do RAI until you have swallowed that radiactive pill or cocktail. Once you have swallowed it, there is no going back. Take care, Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Again Anne, The fact that you are having second thougths about having the RAI, is usually and indication that you are not ready to do it or anything else your having second thoughts about. It is never to late to NOT do RAI until you have swallowed that radiactive pill or cocktail. Once you have swallowed it, there is no going back. Take care, Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Dear Anneguida, Ask your doctor why he/she thinks you should have RAI sooner rather than later? Why the rush? You say your doctor is very kind and understanding, that is great - but it is your body and your decision. It is a decision that is final and will effect the rest of your life, there is no going back once you have had RAI = it will not effect your doctor for the rest of his or her life. At the very least, I think, patients should be given time to truly look at the facts and make a properly informed decision. When I was going through this decision process, the thing that made it difficult for me was that, however nice the doctors were (and they truly were) it felt like they wanted to make the decision for me. They wanted me to have RAI immediately, but as long as you are on ATDs and betablockers, and they are all working well for you - then where is the urgency for this decision? Who does it benefit? Also, I got SO tired of thinking about whether or not to have RAI, and having to argue for, at least a delay of RAI, every time I went to the doctors or the endocrinologist - I nearly had the damn procedure just so that it would all be over and I wouldn't have any more conflict about it. That would have been a very bad reason to do it, but it is the effect of the constant pressure and sometimes, the simple desire to please the doctor that was driving me in that direction. I felt much better once I decided that I would try everything else, before destroying my thyroid gland. For me, the threat of worsening eye disease, which is a possible outcome of RAI, was the thing that ultimately got me going in a different direction; and then the more I read, the more it seemed like a madness to remove such an important gland as the thyroid, when it was the immune system that needed attention. This group will support whatever decision you make and if you do go ahead with RAI we will all hope that it works out well for you. I was very tempted by RAI because it was sold to me as " take this one pill, and then everything will be alright " . The endocrinologist told me he would do RAI because he can't bear taking pills (ATDs) everyday - had nobody told him about going hypo post RAI and a lifetime dependency on thyroxine? I still don't rule out RAI entirely, but there are so many other options to try before doing this irrevocable thing; I would probably choose surgery first out of the two destructive options. At the moment, I am euthyroid and off ATDs - it took about 2 years all up to get this far and I did by using ATDs, changing my lifestyle, playing with copper supplementation, and in the end trying the herb bugleweed... I strongly believe the bugleweed has helped me immensely and would recommend it highly, but you must get professional help with the dosage from a herbalist or naturopath. Good luck ... I know I have gone on a bit here! Hope it helps DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: RAI Dilemma >Date: Fri, 12 Apr 2002 19:51:08 -0000 > >I am really having a dilemma about whether or not to have RAI. > >On the one hand, I've gotten so many informative, supportive emails >from posters who have weighed in against RAI. Then, I have my doctor >who is kind and understanding but who believes I should do RAI sooner >rather than later. > >I am 31 and have been on Tap (5 1/2 mgs) for 6 yrs. It has controlled >my GD well. I went to this dr. and expressed my concern about Tap and >it's negative side effects such as causing birth defects, etc. > >He told me to try 2mos. off of tap which I did and I went high again. >Now, I'm scheduled for RAI and am having 2nd thoughts. > > > >------------------------------------- >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 does 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 April 12, 2002 Report Share Posted April 12, 2002 I had RAI in January. I am very happy with my decision. My doctor and I have been monitoring my levels very closely. RAI is not right for everyone and the decision to or not to have it should be made after you have really looked at all of your options. I am not sure if anyone else on this list who has had RAI has anything positive to say about it, but I feel it has greatly improved my quality of life. So, from my short experience on this list, you will find support about having Graves and weighing the treatment options. You won't really find support for choosing RAI if that is what you do. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 I had RAI in January. I am very happy with my decision. My doctor and I have been monitoring my levels very closely. RAI is not right for everyone and the decision to or not to have it should be made after you have really looked at all of your options. I am not sure if anyone else on this list who has had RAI has anything positive to say about it, but I feel it has greatly improved my quality of life. So, from my short experience on this list, you will find support about having Graves and weighing the treatment options. You won't really find support for choosing RAI if that is what you do. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Amy - You are absolutely right. RAI is not for everyone, and there are people who have had good experiences with it and have been helped by it, and that is great! As I just told someone else, the thing that people have to realize about RAI is that it is a lot like Russian Roulette - you don't know whether you are going to be one of the lucky ones or unlucky ones until it's too late. And then it's permanent. So if you're going to do it, you'd better be damn sure you know the benefits and the risks. Which is where the problem lies - most people _aren't_ told the risks part of it. Instead they are pressured into having RAI shortly after they are diagnosed, when they are confused, vulnerable, and sick. This is the part I have a problem with, as well as the fact that RAI is not fixing the underlying autoimmune disease, which is the true problem. There certainly are cases where RAI is the best answer for a person. But you need a " full disclosure " about it, not just the standard, " take this little pill and you'll be fine " which most people get. You were able to do your homework on all your choices, and you've got a good endo who knows how to monitor a post-RAI patient! You were very fortunate in that respect. I think the problem most people here have with RAI is that it is usually the only option given to patients - no mention of other choices, or they are readily dismissed as " not as good " . This has actually happened to a lot of the people who are vehemently against RAI. They are really just trying to keep other GD patients from being pushed into RAI before they are fully aware of the potential ramifications. It's good that you can share your positive experience with RAI. New people need to hear your story as well. Makes for a more balanced group. Everyone has their own individual circumstances to consider when choosing their treatment. The more varied stories we have, the more info people have to consider for their own decision! Re: RAI Dilemma >I had RAI in January. I am very happy with my decision. My doctor and I have >been monitoring my levels very closely. RAI is not right for everyone and >the decision to or not to have it should be made after you have really >looked at all of your options. > >I am not sure if anyone else on this list who has had RAI has anything >positive to say about it, but I feel it has greatly improved my quality of >life. So, from my short experience on this list, you will find support about >having Graves and weighing the treatment options. You won't really find >support for choosing RAI if that is what you do. > >Amy > > > >------------------------------------- >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 does 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 April 12, 2002 Report Share Posted April 12, 2002 Amy - You are absolutely right. RAI is not for everyone, and there are people who have had good experiences with it and have been helped by it, and that is great! As I just told someone else, the thing that people have to realize about RAI is that it is a lot like Russian Roulette - you don't know whether you are going to be one of the lucky ones or unlucky ones until it's too late. And then it's permanent. So if you're going to do it, you'd better be damn sure you know the benefits and the risks. Which is where the problem lies - most people _aren't_ told the risks part of it. Instead they are pressured into having RAI shortly after they are diagnosed, when they are confused, vulnerable, and sick. This is the part I have a problem with, as well as the fact that RAI is not fixing the underlying autoimmune disease, which is the true problem. There certainly are cases where RAI is the best answer for a person. But you need a " full disclosure " about it, not just the standard, " take this little pill and you'll be fine " which most people get. You were able to do your homework on all your choices, and you've got a good endo who knows how to monitor a post-RAI patient! You were very fortunate in that respect. I think the problem most people here have with RAI is that it is usually the only option given to patients - no mention of other choices, or they are readily dismissed as " not as good " . This has actually happened to a lot of the people who are vehemently against RAI. They are really just trying to keep other GD patients from being pushed into RAI before they are fully aware of the potential ramifications. It's good that you can share your positive experience with RAI. New people need to hear your story as well. Makes for a more balanced group. Everyone has their own individual circumstances to consider when choosing their treatment. The more varied stories we have, the more info people have to consider for their own decision! Re: RAI Dilemma >I had RAI in January. I am very happy with my decision. My doctor and I have >been monitoring my levels very closely. RAI is not right for everyone and >the decision to or not to have it should be made after you have really >looked at all of your options. > >I am not sure if anyone else on this list who has had RAI has anything >positive to say about it, but I feel it has greatly improved my quality of >life. So, from my short experience on this list, you will find support about >having Graves and weighing the treatment options. You won't really find >support for choosing RAI if that is what you do. > >Amy > > > >------------------------------------- >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 does 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 April 12, 2002 Report Share Posted April 12, 2002 Amy - You are absolutely right. RAI is not for everyone, and there are people who have had good experiences with it and have been helped by it, and that is great! As I just told someone else, the thing that people have to realize about RAI is that it is a lot like Russian Roulette - you don't know whether you are going to be one of the lucky ones or unlucky ones until it's too late. And then it's permanent. So if you're going to do it, you'd better be damn sure you know the benefits and the risks. Which is where the problem lies - most people _aren't_ told the risks part of it. Instead they are pressured into having RAI shortly after they are diagnosed, when they are confused, vulnerable, and sick. This is the part I have a problem with, as well as the fact that RAI is not fixing the underlying autoimmune disease, which is the true problem. There certainly are cases where RAI is the best answer for a person. But you need a " full disclosure " about it, not just the standard, " take this little pill and you'll be fine " which most people get. You were able to do your homework on all your choices, and you've got a good endo who knows how to monitor a post-RAI patient! You were very fortunate in that respect. I think the problem most people here have with RAI is that it is usually the only option given to patients - no mention of other choices, or they are readily dismissed as " not as good " . This has actually happened to a lot of the people who are vehemently against RAI. They are really just trying to keep other GD patients from being pushed into RAI before they are fully aware of the potential ramifications. It's good that you can share your positive experience with RAI. New people need to hear your story as well. Makes for a more balanced group. Everyone has their own individual circumstances to consider when choosing their treatment. The more varied stories we have, the more info people have to consider for their own decision! Re: RAI Dilemma >I had RAI in January. I am very happy with my decision. My doctor and I have >been monitoring my levels very closely. RAI is not right for everyone and >the decision to or not to have it should be made after you have really >looked at all of your options. > >I am not sure if anyone else on this list who has had RAI has anything >positive to say about it, but I feel it has greatly improved my quality of >life. So, from my short experience on this list, you will find support about >having Graves and weighing the treatment options. You won't really find >support for choosing RAI if that is what you do. > >Amy > > > >------------------------------------- >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 does 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 April 13, 2002 Report Share Posted April 13, 2002 In a message dated 4/12/02 10:46:20 PM Eastern Daylight Time, graves_support writes: << I went to this dr. and expressed my concern about Tap and it's negative side effects such as causing birth defects, etc. >> If you think Tapazole has negative side effects, consider the permanent side effects of RAI! You can be weaned off Tap, but once you have the RAI you can't undo it. Red Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 In a message dated 4/12/02 10:46:20 PM Eastern Daylight Time, graves_support writes: << I went to this dr. and expressed my concern about Tap and it's negative side effects such as causing birth defects, etc. >> If you think Tapazole has negative side effects, consider the permanent side effects of RAI! You can be weaned off Tap, but once you have the RAI you can't undo it. Red Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 In a message dated 4/12/02 10:46:20 PM Eastern Daylight Time, graves_support writes: << I went to this dr. and expressed my concern about Tap and it's negative side effects such as causing birth defects, etc. >> If you think Tapazole has negative side effects, consider the permanent side effects of RAI! You can be weaned off Tap, but once you have the RAI you can't undo it. Red Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Amy, I hope you stay with this group and continue to let us know your positive experience. While this group tends to be weighted with people who have had problems with RAI, that may not represent the sum total of experiences--as you are proving, so far. Terry > > Reply-To: graves_support > Date: Fri, 12 Apr 2002 20:33:34 -0500 > To: <graves_support > > Subject: Re: RAI Dilemma > > I had RAI in January. I am very happy with my decision. My doctor and I have > been monitoring my levels very closely. RAI is not right for everyone and > the decision to or not to have it should be made after you have really > looked at all of your options. > > I am not sure if anyone else on this list who has had RAI has anything > positive to say about it, but I feel it has greatly improved my quality of > life. So, from my short experience on this list, you will find support about > having Graves and weighing the treatment options. You won't really find > support for choosing RAI if that is what you do. > > Amy > > > > ------------------------------------- > 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 does 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 April 15, 2002 Report Share Posted April 15, 2002 Anne, I must have deleted your initial post...I've been so busy lately I haven't had a chance to go through all the mail. You mentioned in another post, however, that you were concerned about agranulocytosis and the possibility of getting pregnant. Why are you worried about these things if you're not already having trouble? Agranulocytosis is very rare, and generally shows up very early in the treatment if you're going to get it. And, if you want to get pregnant, have your doctor switch you to PTU. It doesn't pass through the placental barrier like Tapazole. It just seems to me that if you're doing fine on the ATDs, there's no reason to go off them now. I know of someone who has been on ATDs for 20 years and is doing fine. You're on such a small dose, so I can't imagine any great harm being done to your liver, either. The thing is, if you do the RAI, you'll be relying on another pill for the rest of your life, and from what I understand, it doesn't work too darn well. My doctor has tried to get me to do RAI from my very first visit. I admit there have been times during my treatment that I considered it, because I was so miserable. But, I think I'm finally on the right dose, and I've been feeling great for about 6 weeks now, and now I can't even imagine how I could have considered it. Just be very careful in your decision. This is the choice of a lifetime..... Holly Quote Link to comment Share on other sites More sharing options...
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