Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 Hi Liang, I've been too busy the last few days to continue to participate in this discussion. I do have a couple of things to say today, even though I have only a few minutes to say them: 1) please do stay in touch with us over the years. We would like (love!) to hear that your RAI experience was a success over the LONG TERM. That is the true test for us. How will you feel in a year? Two? Ten? We want to know! Many of us will still be here, I suspect--I don't have any particular hope I'll achieve remission and my GD go away, and that I lose interest in this group. OTOH, if you find problems down the road, do think of this group as a good resource for help. 2) I think this has been a healthy dialog. Over time in this group there does seem to be a pattern, where someone who recently had RAI comes in, and needs to try to convince us it's OK, perhaps because they are afraid. These people can get pushy. You have abstained from being pushy and you have presented all the research you followed to approach your decision, and personally, I appreciate that. I may not agree with the research, I may see flaws in it--most particularly those that refer to item 1 above, that these studies in general are too short term, and many, many more people develop problems in the long term. We can all respectfully agree to disagree about things around here--but mostly, I applaud this group for being open minded, for not ever censoring posts as they do at NGDF, and for always being here for our members, no matter what. Terry > > Reply-To: graves_support > Date: Fri, 24 Oct 2003 14:58:57 -0000 > To: graves_support > Subject: Re: Fay > > Fay, > > If you check the file area, I just uploaded a summary about ATD use > in past 20 years. It might give you some hint on some of the > research. It does mention TSI in one part of the summary > > RAI is gaining ground everywhere, even in Europe and Japan, places > where ATD and sugery was the mainstream of the treatment. > > Someone made comments that some research results I posted were too > old. I guess she might have missed the point of resarch results. It > is not the age of the research that matters. It is the quality of > research that matters. It was 1953 that DNA was proposed to be > double helix. Fifty years passed, it is still ture and will be true > at least for another 50 years or longer. Even ATD was invented long > time ago, does that mean she is not going to take them because the > clinic trial was done long time ago? > > Science may not have all the answers to every problem. But > eventually, it will have answers to it with the help from sounding > resarch. > > Patients with Graves are usually having or prone to have other auto > immune diseases, such as seasonal allergy or other problems. They > have over-active immune system. Some of them might develop such > problems in late their lives, To blame all the problems on RAI, > that is not fair. Of course, only with sounding resarch, it then can > be clarified. But people tend to only blame these on RAI. > > Do not get me wrong. I am not advacating RAI. I am just talking > about plain facts. If you can, keep your thyroid with ATD. The > chances are from 26-60%, depends different research, even with long > term research. The rest of the unlucky ones including me will have > to decide what to do with it. > > Just hate to give newbies the idea that ATD will cure every Graves > and RAI will lead all the problems. > > Happy talking. > > Best wishes. > > Liang > >>> Endocrinol Jpn. 1991 Apr;38(2):223-7. Related Articles, Links >>> >>> Antithyroid drug therapy for Graves' hyperthyroidism: is long- > term >>> administration of a small maintenance dose necessary? >> >> I find all this fascinating. I don't have internet access and I > would >> otherwise have been too intimidated to think of tackling these > kinds of >> works. And yet once they're handed to me I find them accessible > enough >> that I can even make a few intelligent comments ;-) >> >> - The study doesn't mention if TSI was tested at all. >> - The study doesn't mention how the ATD was administered. I > suspect it >> was administered PROPERLY - starting at a presumably appropriately > high >> dose and gradually lowered. One of the dialogues quack endos > employ goes >> like this: >> Dr. (dismissing ATDs): Noone uses ATDs anymore; ATD use is down >> everywhere. >> Patient: In Japan they use ATDs with what I've heard is respectable >> success. >> Dr: Yeah, but thanks to the bomb they're leery of it over there. > But it's >> changing there too. >> >> So while radioactivity for medical treatments may be gaining > ground, for >> now, Japanese endocrinologists still have more of a handle on ATD > use >> than their American counterparts. >> >> Take care, Fay >> >> >> ________________________________________________________________ >> The best thing to hit the internet in years - Juno SpeedBand! >> Surf the web up to FIVE TIMES FASTER! >> Only $14.95/ month - visit www.juno.com to sign up today! > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 Terry, Thanks for your suggestions. I will be hanging around from time to time. Just to point out a few things, 1. I am not scared myself. Just the counter buzzing made me a bit nervous to approach my sons for the intitial two weeks after RAI. So, I was here to get some suggestions for how to manage this, which I only got it through a personal email from one of the member here who underwent RAI sometime ago, however, I did get some warm-hearted suggestions for myself from this groups, I appreciated that. 2. My mom had RAI in 60's. Forty years passed, she never had any problems other than the need of for replacement hormone, which made me more calmer to take the RAI after years on ATD. Usually, genetics does play a role here. If my mom had no bad reaction to it, most likely, I will not either. but I will keep this group posted with follow up results. 3. People have their own rights to make choices with their treatment. Please encourage newbies to do more research by themselves instead of just telling all the bad things about one treatment. By now, every treatment has its side effects. Only well- designed clinicals trial have the answers for our questions. So as to how to evaluate the clinical trial, that is everyone's own interpretation, based on their background or education. The understanding can vary if we look from different aspect. However, never think we are smarter than all the people in the medical field, after all, they have seen more cases than all of us combined. We can speak for ourselves, but not for all the Graves patients. To only tell all the bad things about one treatment will lead people to make wrong judgement. 4. If my email offends anybody, that was not my intention. If they became annoying, please just ignore. However, I will contiue to post any new research proceeding with Graves, good or bad. It will be benefit people here. Another words, I will not shut up. Still, if you can, pleaes keep your thyroid, that would be the best. If you can not, be open-minded. There are more options which may not be that horrible as we might have thought. Wish all the best, Liang > >>> Endocrinol Jpn. 1991 Apr;38(2):223-7. Related Articles, Links > >>> > >>> Antithyroid drug therapy for Graves' hyperthyroidism: is long- > > term > >>> administration of a small maintenance dose necessary? > >> > >> I find all this fascinating. I don't have internet access and I > > would > >> otherwise have been too intimidated to think of tackling these > > kinds of > >> works. And yet once they're handed to me I find them accessible > > enough > >> that I can even make a few intelligent comments ;-) > >> > >> - The study doesn't mention if TSI was tested at all. > >> - The study doesn't mention how the ATD was administered. I > > suspect it > >> was administered PROPERLY - starting at a presumably appropriately > > high > >> dose and gradually lowered. One of the dialogues quack endos > > employ goes > >> like this: > >> Dr. (dismissing ATDs): Noone uses ATDs anymore; ATD use is down > >> everywhere. > >> Patient: In Japan they use ATDs with what I've heard is respectable > >> success. > >> Dr: Yeah, but thanks to the bomb they're leery of it over there. > > But it's > >> changing there too. > >> > >> So while radioactivity for medical treatments may be gaining > > ground, for > >> now, Japanese endocrinologists still have more of a handle on ATD > > use > >> than their American counterparts. > >> > >> Take care, Fay > >> > >> > >> ________________________________________________________________ > >> The best thing to hit the internet in years - Juno SpeedBand! > >> Surf the web up to FIVE TIMES FASTER! > >> Only $14.95/ month - visit www.juno.com to sign up today! > > > > > > > > ------------------------------------- > > The Graves' list is intended for informational purposes only and is not > > intended to replace expert medical care. > > Please consult your doctor before changing or trying new treatments. > > ---------------------------------------- > > DISCLAIMER > > > > Advertisments placed on this yahoo groups list do not have the endorsement of > > the listowner. I have no input as to what ads are attached to emails. > > ----------------------------------------------------------------- ------------- > > -------- > > > > Quote Link to comment Share on other sites More sharing options...
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