Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi Ruthie, The lady you met, did you ask her if she very slowly tapered off the Tap, which I keep reading is the best way to do it. Or did she just stop it, cold turkey , which I see people have doctors have them do, and then the hyper returns. Thus my exceedingly slow withdrawal of my PTU. And I agree with you that 2 months is way too soon to judge. I think two years would be a better time frame to see how it has gone. My doctor has a bunch of patients on ATDs for 10 and 15 yr. , so my thinking is that if my brandy new remission status changes, ATDs are still my best choice. Especially now that I know so much more about labs, nutrition, life style....mostly being able to judge my own labs now and know what is right for me. I sure am curious about how she went off of the Tap. -Pam- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi Ruth, I know two people who have had RAI for Graves and are doing very well at the moment. The trouble is there is no way to predict who will do well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi Ruth, I know two people who have had RAI for Graves and are doing very well at the moment. The trouble is there is no way to predict who will do well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi Ruth, I know two people who have had RAI for Graves and are doing very well at the moment. The trouble is there is no way to predict who will do well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Hi Ruthie- Your husband is right in that the people that are well don't generally report on how they're doing. However, the people that don't do well don't generally report either. There are people that want to know about RAI who report that they are doing well after they have it on these boards. Then they disappear. So it's not as unbalanced as your husband thinks. I never did well after RAI but didn't go to these kinds of boards until I was 11 years post-RAI. So who knows? It seems that you can find a thesis supporting whatever conclusion you want regarding RAI. My husband treats many post-RAI patients. Some do well. Some do not. Considering what he's seen, he would not recommend it. It's a gamble. One that I lost and he has to live with. Take care, > Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. > Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Ruthie, In my case, I resisted taking ATD's for the first year or so, did only Chinese herbs. That got all messed up when we went to Europe for 3 weeks, couldn't take my usual herbs which I had to brew fresh every 2 days, so took powders--and one of the most important herbs for me didn't come in powder form. Once I got back, I went on ATD's and remained on them for several years (have a few regrets about not keeping a diary, my memory is not great). Resisted the push for RAI, my doctor said the same thing your husband did, but I am and have always been very, very leery of any radiation, even dental xrays or mammograms. So, I persisted in resisting. Anyway, I didn't find this group or do much research for a very long time, just did my bloodwork every 3 months and reduced/increased dosages as the endo said. As time went by, I got to 5 mg. per day, and at a certain point (fuzzy, fuzzy was my brain...) the endo told me to stop. Stayed in remission for a while--but then got stressed and not really being as aware as I should be of symptoms, went way overboard hyper again, back at the beginning, on 40 mg. a day. Anyway, this time I got serious, reading and studying and learning from this group, and finally got through my numb skull what all those numbers meant, it took forever for that info to filter down to the level where I actually had an understanding of it. That's when I started the symptom list business, really because I KNEW I had to control what happened to me, needed to be aware of all the symptoms, all the possibilities, and instead of listening to the doctor, listen to my own body. The list turned out to be invaluable in tuning me in, letting me focus on something real (symptoms) instead of just numbers. Much more how my brain works. As I developed more sense of the signposts of how I was, I found myself much more able to determine my own dosage. For about the last year, the endo has left the prescription at 15 mg. per day, I've filled it and taken a gradually smaller amount of the stuff, the decreases dictated by my beginning to notice hypO rather than euthyroid symptoms. Many of the drops, I confess, came after I was probably hypO for a week or two--both because the state is hard to identify when one is in it (the brain fog thing), and because I had to learn that THIS is hypo, having only been hyper before. Test numbers did not necessarily support that conclusion, but mostly he tested TSH only, and we all know how terribly meaningless it can be. I had (at Elaine and Jody's urging) a bit of a run-in with my endo last August, asked--demanded, really-- that I get my antibodies tested. He deemed it unnecessary, but ordered the tests. Results were virtually negative, antibodies extremely low. So I knew (despite my ****TSH never going up, at that point, past <0.01) that I was getting closer to remission. Then, like magic, TSH started to rise, getting all the way up to .32, 2 tests ago. Highest it's ever been. So anyway, longwinded as I am being I hope I'm helping--anyway, every time I felt hypO I decreased the dosage. When I got down to 5 mg., I was determined to decrease slowly rather than just go off again, in hopes that I would gently ease into a remission that would last. So I dropped my dose to 3.75, and a month later when I felt those now-familiar logy, braindead feelings, to 2.5, then a month or so later to 1.25--that's 1/4 of a tiny pill by the way--and finally, just a few days before my last endo appointment, I felt like I simply couldn't force another 1/4 pill down my throat, that I had to stop--so I did. My last bloodwork was only another TSH (sigh) plus liver panel, and TSH had gone down a bit, to .25, but somehow I've been fine, just totally fine. My pulse is mostly between 68-76, I sleep pretty good, and I have had a decent but not great energy level. Only problem is I've gained 5 lbs., and been back to being hungry much more than I was. But, along with that I have been ever so slightly constipated, so I don't think it's a hyper thing. I figure if anything, it's survival mechanism for winter. It's been quite cold for California, down in the high 30's at night, low 50's daytime--which ain't much I know (Jody, you're probably laughing your head off right about now), but the way these houses are built, it's darn hard to stay warm. Anyway, I've had maybe 3 incidents of fast pulse/weakness, each lasting about 1/2 hour or so, then abruptly ending, since December 19th. I'm thinking about calling the endo and asking him to call in early labs, just so I can see how I am doing. The final thing I need to still emphasize, is that throughout all of this I've taken Chinese herbs daily, and they do smooth things out, from what I can tell. Although my life is far from stress-free, and I know that all it would take is some severe stress-incident to get me going again, I feel pretty confident that this remission will last--at least for a while. But not confident enough, that if I were to take a trip, I would leave my methimazole bottle home! Hope this longwinded novel helps! Terry > > Reply-To: graves_support > Date: Tue, 29 Jan 2002 16:42:41 -0600 > To: <graves_support > > Subject: Terry...may I ask a question??? > > Hi Terry...I am so glad to hear you are in remission...I am optimistically on > my way there too. I was so excited yesterday when I heard a stranger say > something about finally being off Tapazole. I went right up to her( being that > she is the only in-the-flesh person I've met with GD other than myself.) She > said she responded well to the Tap and was on it for 2 years...but every time > she tried to come off of it completely, she went hyper again so she recently > had RAI...2 mos. ago maybe. My question is...did this happen for you as well( > not the RAI, but the going hyper when coming off the ATD)..is that why I think > I heard you were on the ATDs on and off for 7 years? She was maybe in her mid > 50's...I think I've heard age is a factor too, but I was very bummed to hear > this news..and though I would never have the RAI done.....can one stay on the > ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. > Another question for anybody....Have any of you heard of anyone being happy > long term with their RAI choice. She was all bubbly and happy about hers and > said the only adverse reaction she noticed was swelling of her gums. She is > only a couple of months into it though. My husband thinks that this group only > hears the negatives and that the people happy with their treatment and their > outcome don't need this support...he comes from a background of thinking the > Drs always know best and he and his family went to the Dr for every cold and > sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our > own immune systems to fight whatever we had. I rambled on again..but thanks in > advance for answers to questions.. > Ruthie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Ruthie, I had the same question about RAI -- are we just hearing the bad stuff? There is probably some truth in that statement. People who are not having any problems, in general, don't join support groups. Why would they? I try to keep that in mind when I get so frightened by everything. I really do think that most people are fine with the RAI (at least for 40 years or so!). Think about how many people have it done! I did a frantic search for " positive " experiences with RAI a few weeks ago. I did find celebrities -- Gail Devers and Ben Crenshaw , and possibly Ripken, but she hasn't disclosed her treatment anywhere that I can tell. I also posed the question to the NGDF BB, and got a LOT of positive responses. Now, does that mean I'm going to do RAI? Probably not. Here's why: with RAI, the thyroid continues to die slowly for sometimes years. That mean years of trying to get your replacement dose right, and I'm not willing to go through that. I'm not willing to gain weight, and I think my chances of that happening are much greater with the RAI because of that fluctuation in levels. Also, there is at least a temporary increase in antibodies after the RAI, which, in about 15% of the cases, causes a worsening of the eyes. I'm also not willing to take that chance. And, I fully intend to live to be 100. I'm 37 now. I think with RAI, there is an increased chance that I would get cancer. I think it would take 30, 40 or 50 years to happen, but that would be in my projected lifetime, and that's not acceptable to me either. Now, from my understanding, and I'm going to discuss this with my new doctor (yeah!) with surgery, you have a fixed amount of thyroid left (or none if you do a total), and it is much easier and faster to get your replacement hormone right. Also, you are pretty much guaranteed to have some functioning thyroid left with a sub-total, and I'm with Caroline on that -- having some natural thyroid function left has got to be better than relying on a synthetic, that couldn't possibly do everything that this amazing body was designed to do so perfectly. And, I've heard, but it hasn't been confirmed, that antibodies all but disappear after the surgery. I'm still taking methimazole, but I am getting frustrated. It's only been six months, but I feel like crap most of the time, and my eyes are getting worse. They haven't popped out, but I have awful dryness, and itching, and burning, and they're always bloodshot, and I occasionally have stabbing pains in them. I'm trying to keep from jumping into anything right away, but it is hard. When I see my new doctor, I'm going to get his opinion on whether I am really wasting my time with the ATDs, or if I should continue to try for remission for a while. Just my thoughts, Holly Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Ruthie, I had the same question about RAI -- are we just hearing the bad stuff? There is probably some truth in that statement. People who are not having any problems, in general, don't join support groups. Why would they? I try to keep that in mind when I get so frightened by everything. I really do think that most people are fine with the RAI (at least for 40 years or so!). Think about how many people have it done! I did a frantic search for " positive " experiences with RAI a few weeks ago. I did find celebrities -- Gail Devers and Ben Crenshaw , and possibly Ripken, but she hasn't disclosed her treatment anywhere that I can tell. I also posed the question to the NGDF BB, and got a LOT of positive responses. Now, does that mean I'm going to do RAI? Probably not. Here's why: with RAI, the thyroid continues to die slowly for sometimes years. That mean years of trying to get your replacement dose right, and I'm not willing to go through that. I'm not willing to gain weight, and I think my chances of that happening are much greater with the RAI because of that fluctuation in levels. Also, there is at least a temporary increase in antibodies after the RAI, which, in about 15% of the cases, causes a worsening of the eyes. I'm also not willing to take that chance. And, I fully intend to live to be 100. I'm 37 now. I think with RAI, there is an increased chance that I would get cancer. I think it would take 30, 40 or 50 years to happen, but that would be in my projected lifetime, and that's not acceptable to me either. Now, from my understanding, and I'm going to discuss this with my new doctor (yeah!) with surgery, you have a fixed amount of thyroid left (or none if you do a total), and it is much easier and faster to get your replacement hormone right. Also, you are pretty much guaranteed to have some functioning thyroid left with a sub-total, and I'm with Caroline on that -- having some natural thyroid function left has got to be better than relying on a synthetic, that couldn't possibly do everything that this amazing body was designed to do so perfectly. And, I've heard, but it hasn't been confirmed, that antibodies all but disappear after the surgery. I'm still taking methimazole, but I am getting frustrated. It's only been six months, but I feel like crap most of the time, and my eyes are getting worse. They haven't popped out, but I have awful dryness, and itching, and burning, and they're always bloodshot, and I occasionally have stabbing pains in them. I'm trying to keep from jumping into anything right away, but it is hard. When I see my new doctor, I'm going to get his opinion on whether I am really wasting my time with the ATDs, or if I should continue to try for remission for a while. Just my thoughts, Holly Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Holly, My endo had told me that it usually takes a minimum of 2 yrs before you will achieve remission on ADTs. So I think you have to settle in for the long run. By the way I love your logical way of thinking this through... very precise and thoughtful. Kate. Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Holly, My endo had told me that it usually takes a minimum of 2 yrs before you will achieve remission on ADTs. So I think you have to settle in for the long run. By the way I love your logical way of thinking this through... very precise and thoughtful. Kate. Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks, Kate. Unfortunately, this has become my life. Not a day goes by that I'm not researching and wondering what the heck I'm supposed to do! Probably not the best way to handle it, stress-wise, but I can't help it. I'm a control freak from way back, and all of a sudden I don't have control any more! Maybe God is trying to teach me to let go a little! I would really like to know, if anyone knows, of those who achieve remission on ATDs, what percentage go hyper again, and in what time frame. Research tells me that, even if you do go into remission, that you'll almost inevitably go hyper again. But, I was also told by my doctor, that (and I can still quote him) " if people with Graves' disease go UNTREATED, AND they SURVIVE [big key word here], they will eventually go hypO anyway. " This was told to me on my first endo visit when I was panicking about going hypO if I had RAI. (what I wouldn't give, now, if hypO was my only problem!) So, if that's the case, then it makes a good case for ATDs to me. The thyroid will eventually burn out on its own--maybe longer if you're being treated--but eventually it will. There has to be a flaw in that reasoning, though, or everyone would be using ATDs and there would be no RAI or surgery for Graves' patients. Does anyone have statistics on remission and recurrence, other than only 30 to 50% achieve remission, and that's SUPPOSEDLY only in mild cases? I was told I have a large goiter (although it will go up and down in size overnight with dosage changes) and that my chance for remission is almost nil. I'm looking forward to hearing my new doctor's opinion. He's at the University of Kentucky, and his special interest is in " autoimmune thyroid disease and nutrition " . So, I'm thinking he'll have a little more progressive view of things than my previous endo. Holly Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi Pam...I believe this woman said she had been down to a very small maintenance dose..but I did not hear the exact amount. I wish now I had grilled her a bit more, but she was busy. She had been told that she had only a 10% chance of remission anyway. My Endo has told me that those at my age I am 40.... can have better than 50% chance of remission. But I am with you...I would do it this way all over again....at least I can function, and I am much more aware of how I am feeling day to day...and I know what to look for in terms of symptoms. Sorry I don't have an answer for you..but maybe with having been given such a small percentage rate of remission, she and her DR. gave up too quickly. Re: Terry...may I ask a question??? Hi Ruthie, The lady you met, did you ask her if she very slowly tapered off the Tap, which I keep reading is the best way to do it. Or did she just stop it, cold turkey , which I see people have doctors have them do, and then the hyper returns. Thus my exceedingly slow withdrawal of my PTU. And I agree with you that 2 months is way too soon to judge. I think two years would be a better time frame to see how it has gone. My doctor has a bunch of patients on ATDs for 10 and 15 yr. , so my thinking is that if my brandy new remission status changes, ATDs are still my best choice. Especially now that I know so much more about labs, nutrition, life style....mostly being able to judge my own labs now and know what is right for me. I sure am curious about how she went off of the Tap. -Pam- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks ...I guess the gamble is not worth taking. It helps to have your husband's perspective as one who treats post RAI patients. Ruthie Re: Terry...may I ask a question??? Hi Ruthie- Your husband is right in that the people that are well don't generally report on how they're doing. However, the people that don't do well don't generally report either. There are people that want to know about RAI who report that they are doing well after they have it on these boards. Then they disappear. So it's not as unbalanced as your husband thinks. I never did well after RAI but didn't go to these kinds of boards until I was 11 years post-RAI. So who knows? It seems that you can find a thesis supporting whatever conclusion you want regarding RAI. My husband treats many post-RAI patients. Some do well. Some do not. Considering what he's seen, he would not recommend it. It's a gamble. One that I lost and he has to live with. Take care, > Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. > Ruthie ------------------------------------- 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 January 30, 2002 Report Share Posted January 30, 2002 Thanks ...I guess the gamble is not worth taking. It helps to have your husband's perspective as one who treats post RAI patients. Ruthie Re: Terry...may I ask a question??? Hi Ruthie- Your husband is right in that the people that are well don't generally report on how they're doing. However, the people that don't do well don't generally report either. There are people that want to know about RAI who report that they are doing well after they have it on these boards. Then they disappear. So it's not as unbalanced as your husband thinks. I never did well after RAI but didn't go to these kinds of boards until I was 11 years post-RAI. So who knows? It seems that you can find a thesis supporting whatever conclusion you want regarding RAI. My husband treats many post-RAI patients. Some do well. Some do not. Considering what he's seen, he would not recommend it. It's a gamble. One that I lost and he has to live with. Take care, > Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. > Ruthie ------------------------------------- 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 January 30, 2002 Report Share Posted January 30, 2002 Thanks ...I guess the gamble is not worth taking. It helps to have your husband's perspective as one who treats post RAI patients. Ruthie Re: Terry...may I ask a question??? Hi Ruthie- Your husband is right in that the people that are well don't generally report on how they're doing. However, the people that don't do well don't generally report either. There are people that want to know about RAI who report that they are doing well after they have it on these boards. Then they disappear. So it's not as unbalanced as your husband thinks. I never did well after RAI but didn't go to these kinds of boards until I was 11 years post-RAI. So who knows? It seems that you can find a thesis supporting whatever conclusion you want regarding RAI. My husband treats many post-RAI patients. Some do well. Some do not. Considering what he's seen, he would not recommend it. It's a gamble. One that I lost and he has to live with. Take care, > Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. > Ruthie ------------------------------------- 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 January 30, 2002 Report Share Posted January 30, 2002 Thank you Terry...your novel is a huge help. My prospects are not dim. I just have a feeling that I have never responded well to stress. I had a period of palpitations when my high need child started school..he is now 17. But I wore that Holter monitor for 24 hours and they found benign pre-ventricular contractions....most probably due to stress. My life is quite stress free for the most part...but my body seems to respond overly much to any monkey wrench that might be thrown my way. I am a low key sensible person who can roll with the flow...but my body doesn't cooperate and I can palpitate or feel that adrenaline surge and heart racing if something unexpected happens. I guess that may get me in trouble for relapse type episodes...oh well..I can't worry about it...one goal at a time...and the first order of business is to exercise more and keep hoping for remission...in another 9 months or so. Thanks again for sharing your experience. Ruthie Terry...may I ask a question??? > > Hi Terry...I am so glad to hear you are in remission...I am optimistically on > my way there too. I was so excited yesterday when I heard a stranger say > something about finally being off Tapazole. I went right up to her( being that > she is the only in-the-flesh person I've met with GD other than myself.) She > said she responded well to the Tap and was on it for 2 years...but every time > she tried to come off of it completely, she went hyper again so she recently > had RAI...2 mos. ago maybe. My question is...did this happen for you as well( > not the RAI, but the going hyper when coming off the ATD)..is that why I think > I heard you were on the ATDs on and off for 7 years? She was maybe in her mid > 50's...I think I've heard age is a factor too, but I was very bummed to hear > this news..and though I would never have the RAI done.....can one stay on the > ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. > Another question for anybody....Have any of you heard of anyone being happy > long term with their RAI choice. She was all bubbly and happy about hers and > said the only adverse reaction she noticed was swelling of her gums. She is > only a couple of months into it though. My husband thinks that this group only > hears the negatives and that the people happy with their treatment and their > outcome don't need this support...he comes from a background of thinking the > Drs always know best and he and his family went to the Dr for every cold and > sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our > own immune systems to fight whatever we had. I rambled on again..but thanks in > advance for answers to questions.. > Ruthie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thank you Terry...your novel is a huge help. My prospects are not dim. I just have a feeling that I have never responded well to stress. I had a period of palpitations when my high need child started school..he is now 17. But I wore that Holter monitor for 24 hours and they found benign pre-ventricular contractions....most probably due to stress. My life is quite stress free for the most part...but my body seems to respond overly much to any monkey wrench that might be thrown my way. I am a low key sensible person who can roll with the flow...but my body doesn't cooperate and I can palpitate or feel that adrenaline surge and heart racing if something unexpected happens. I guess that may get me in trouble for relapse type episodes...oh well..I can't worry about it...one goal at a time...and the first order of business is to exercise more and keep hoping for remission...in another 9 months or so. Thanks again for sharing your experience. Ruthie Terry...may I ask a question??? > > Hi Terry...I am so glad to hear you are in remission...I am optimistically on > my way there too. I was so excited yesterday when I heard a stranger say > something about finally being off Tapazole. I went right up to her( being that > she is the only in-the-flesh person I've met with GD other than myself.) She > said she responded well to the Tap and was on it for 2 years...but every time > she tried to come off of it completely, she went hyper again so she recently > had RAI...2 mos. ago maybe. My question is...did this happen for you as well( > not the RAI, but the going hyper when coming off the ATD)..is that why I think > I heard you were on the ATDs on and off for 7 years? She was maybe in her mid > 50's...I think I've heard age is a factor too, but I was very bummed to hear > this news..and though I would never have the RAI done.....can one stay on the > ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. > Another question for anybody....Have any of you heard of anyone being happy > long term with their RAI choice. She was all bubbly and happy about hers and > said the only adverse reaction she noticed was swelling of her gums. She is > only a couple of months into it though. My husband thinks that this group only > hears the negatives and that the people happy with their treatment and their > outcome don't need this support...he comes from a background of thinking the > Drs always know best and he and his family went to the Dr for every cold and > sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our > own immune systems to fight whatever we had. I rambled on again..but thanks in > advance for answers to questions.. > Ruthie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thank you Terry...your novel is a huge help. My prospects are not dim. I just have a feeling that I have never responded well to stress. I had a period of palpitations when my high need child started school..he is now 17. But I wore that Holter monitor for 24 hours and they found benign pre-ventricular contractions....most probably due to stress. My life is quite stress free for the most part...but my body seems to respond overly much to any monkey wrench that might be thrown my way. I am a low key sensible person who can roll with the flow...but my body doesn't cooperate and I can palpitate or feel that adrenaline surge and heart racing if something unexpected happens. I guess that may get me in trouble for relapse type episodes...oh well..I can't worry about it...one goal at a time...and the first order of business is to exercise more and keep hoping for remission...in another 9 months or so. Thanks again for sharing your experience. Ruthie Terry...may I ask a question??? > > Hi Terry...I am so glad to hear you are in remission...I am optimistically on > my way there too. I was so excited yesterday when I heard a stranger say > something about finally being off Tapazole. I went right up to her( being that > she is the only in-the-flesh person I've met with GD other than myself.) She > said she responded well to the Tap and was on it for 2 years...but every time > she tried to come off of it completely, she went hyper again so she recently > had RAI...2 mos. ago maybe. My question is...did this happen for you as well( > not the RAI, but the going hyper when coming off the ATD)..is that why I think > I heard you were on the ATDs on and off for 7 years? She was maybe in her mid > 50's...I think I've heard age is a factor too, but I was very bummed to hear > this news..and though I would never have the RAI done.....can one stay on the > ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. > Another question for anybody....Have any of you heard of anyone being happy > long term with their RAI choice. She was all bubbly and happy about hers and > said the only adverse reaction she noticed was swelling of her gums. She is > only a couple of months into it though. My husband thinks that this group only > hears the negatives and that the people happy with their treatment and their > outcome don't need this support...he comes from a background of thinking the > Drs always know best and he and his family went to the Dr for every cold and > sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our > own immune systems to fight whatever we had. I rambled on again..but thanks in > advance for answers to questions.. > Ruthie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks for your reply Holly...nice to know I am not alone. Good luck with your research and please share what you find. My decision is made... to continue with the ATDs for as long as it takes...surgery would be my second choice..but as a singer, I would be VERY concerned about vocal chord damage. Thanks, Ruthie Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks for your reply Holly...nice to know I am not alone. Good luck with your research and please share what you find. My decision is made... to continue with the ATDs for as long as it takes...surgery would be my second choice..but as a singer, I would be VERY concerned about vocal chord damage. Thanks, Ruthie Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Thanks for your reply Holly...nice to know I am not alone. Good luck with your research and please share what you find. My decision is made... to continue with the ATDs for as long as it takes...surgery would be my second choice..but as a singer, I would be VERY concerned about vocal chord damage. Thanks, Ruthie Terry...may I ask a question??? Hi Terry...I am so glad to hear you are in remission...I am optimistically on my way there too. I was so excited yesterday when I heard a stranger say something about finally being off Tapazole. I went right up to her( being that she is the only in-the-flesh person I've met with GD other than myself.) She said she responded well to the Tap and was on it for 2 years...but every time she tried to come off of it completely, she went hyper again so she recently had RAI...2 mos. ago maybe. My question is...did this happen for you as well( not the RAI, but the going hyper when coming off the ATD)..is that why I think I heard you were on the ATDs on and off for 7 years? She was maybe in her mid 50's...I think I've heard age is a factor too, but I was very bummed to hear this news..and though I would never have the RAI done.....can one stay on the ATDs indefinitely? Still hoping for remission...been on ATDS for 13 mos. Another question for anybody....Have any of you heard of anyone being happy long term with their RAI choice. She was all bubbly and happy about hers and said the only adverse reaction she noticed was swelling of her gums. She is only a couple of months into it though. My husband thinks that this group only hears the negatives and that the people happy with their treatment and their outcome don't need this support...he comes from a background of thinking the Drs always know best and he and his family went to the Dr for every cold and sniffle. I grew up with a Nurse mom who never took us to the Dr and wanted our own immune systems to fight whatever we had. I rambled on again..but thanks in advance for answers to questions.. Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Ruthie, I am the same way. Which is why I don't watch scary movies, I have NO control over how I react to them. Sometimes my own nightmares can bring on palpitations! Terry > > Reply-To: graves_support > Date: Wed, 30 Jan 2002 09:37:23 -0600 > To: <graves_support > > Subject: Re: Terry...may I ask a question??? > > Thank you Terry...your novel is a huge help. My prospects are not dim. I just > have a feeling that I have never responded well to stress. I had a period of > palpitations when my high need child started school..he is now 17. But I wore > that Holter monitor for 24 hours and they found benign pre-ventricular > contractions....most probably due to stress. My life is quite stress free for > the most part...but my body seems to respond overly much to any monkey wrench > that might be thrown my way. I am a low key sensible person who can roll with > the flow...but my body doesn't cooperate and I can palpitate or feel that > adrenaline surge and heart racing if something unexpected happens. I guess > that may get me in trouble for relapse type episodes...oh well..I can't worry > about it...one goal at a time...and the first order of business is to exercise > more and keep hoping for remission...in another 9 months or so. Thanks again > for sharing your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Ruthie, I am the same way. Which is why I don't watch scary movies, I have NO control over how I react to them. Sometimes my own nightmares can bring on palpitations! Terry > > Reply-To: graves_support > Date: Wed, 30 Jan 2002 09:37:23 -0600 > To: <graves_support > > Subject: Re: Terry...may I ask a question??? > > Thank you Terry...your novel is a huge help. My prospects are not dim. I just > have a feeling that I have never responded well to stress. I had a period of > palpitations when my high need child started school..he is now 17. But I wore > that Holter monitor for 24 hours and they found benign pre-ventricular > contractions....most probably due to stress. My life is quite stress free for > the most part...but my body seems to respond overly much to any monkey wrench > that might be thrown my way. I am a low key sensible person who can roll with > the flow...but my body doesn't cooperate and I can palpitate or feel that > adrenaline surge and heart racing if something unexpected happens. I guess > that may get me in trouble for relapse type episodes...oh well..I can't worry > about it...one goal at a time...and the first order of business is to exercise > more and keep hoping for remission...in another 9 months or so. Thanks again > for sharing your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi Ruthie and Terry, I get the palpitations sometimes watching scary movies also. Like CSI, I've always loved mysteries but don't know how I will react to what's going on. Debbie R. Debbie who used ATDs and took 5.5 yrs. to get my thyroid levels back to normal and would do the same again if I had too, has learned here to supplement gradually thanks to Jody. > Ruthie, > > I am the same way. Which is why I don't watch scary movies, I have NO > control over how I react to them. Sometimes my own nightmares can bring on > palpitations! > > Terry > > > From: " Ruthie Schaffer " <rschaffer@u...> > > Reply-To: graves_support@y... > > Date: Wed, 30 Jan 2002 09:37:23 -0600 > > To: <graves_support@y...> > > Subject: Re: Terry...may I ask a question??? > > > > Thank you Terry...your novel is a huge help. My prospects are not dim. I just > > have a feeling that I have never responded well to stress. I had a period of > > palpitations when my high need child started school..he is now 17. But I wore > > that Holter monitor for 24 hours and they found benign pre-ventricular > > contractions....most probably due to stress. My life is quite stress free for > > the most part...but my body seems to respond overly much to any monkey wrench > > that might be thrown my way. I am a low key sensible person who can roll with > > the flow...but my body doesn't cooperate and I can palpitate or feel that > > adrenaline surge and heart racing if something unexpected happens. I guess > > that may get me in trouble for relapse type episodes...oh well..I can't worry > > about it...one goal at a time...and the first order of business is to exercise > > more and keep hoping for remission...in another 9 months or so. Thanks again > > for sharing your experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hi Ruthie and Terry, I get the palpitations sometimes watching scary movies also. Like CSI, I've always loved mysteries but don't know how I will react to what's going on. Debbie R. Debbie who used ATDs and took 5.5 yrs. to get my thyroid levels back to normal and would do the same again if I had too, has learned here to supplement gradually thanks to Jody. > Ruthie, > > I am the same way. Which is why I don't watch scary movies, I have NO > control over how I react to them. Sometimes my own nightmares can bring on > palpitations! > > Terry > > > From: " Ruthie Schaffer " <rschaffer@u...> > > Reply-To: graves_support@y... > > Date: Wed, 30 Jan 2002 09:37:23 -0600 > > To: <graves_support@y...> > > Subject: Re: Terry...may I ask a question??? > > > > Thank you Terry...your novel is a huge help. My prospects are not dim. I just > > have a feeling that I have never responded well to stress. I had a period of > > palpitations when my high need child started school..he is now 17. But I wore > > that Holter monitor for 24 hours and they found benign pre-ventricular > > contractions....most probably due to stress. My life is quite stress free for > > the most part...but my body seems to respond overly much to any monkey wrench > > that might be thrown my way. I am a low key sensible person who can roll with > > the flow...but my body doesn't cooperate and I can palpitate or feel that > > adrenaline surge and heart racing if something unexpected happens. I guess > > that may get me in trouble for relapse type episodes...oh well..I can't worry > > about it...one goal at a time...and the first order of business is to exercise > > more and keep hoping for remission...in another 9 months or so. Thanks again > > for sharing your experience. Quote Link to comment Share on other sites More sharing options...
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