Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 What! You think you're the only person here with a scientific background. Go back to school and you'll find the shortcomings of research. Take care, dx & RAI 1987 (at age 24) > > Folks, > > I am glad that at least my numbers which are in concordance with the researches and statistics on this topic, created such a strong adverse reaction from you. If it made at least one person who reads, rethink, reconsider his/her decision, it will be satisfying to me. > > The sad thing about this " support group " is that it lacks the emotional and compassionate support I was looking for. On the contrary, it contains plenty of unacceptable and demeaning comments once one has a different opinion from the 'group's opinion'. Thank you for the links you sent, I will not take the time to read all of them, because deep in my heart I know I made the best decision for me. > > In an end, facts are facts. And interpretations of the facts are just interpretations of the facts(that includes numbers). Each one of us is responsible to investigate and make the best decision as a result of their investigation process. > > Personal attacks are sad and unacceptable to me. Please remove my name from the list. > > I wish you luck in your health endeavors, and for whoever will end up on this group and read I will add a word of caution. Please go and get 2-3 doctors' opinions, and take the opinions of the people here with a grain of salt, since I am sure not too many of them have good medical backgrounds. Your health is a serious issue. And keep in mind, the recurrence of Graves Disease, once in remission, is approximately 50%. Once GD strikes back, the symptoms could be quite different from when it hit the first time. Nothing is standard here, unless much more will be uncovered in the years to come about this disease. Ask your friends, ask your co-workers, ask your acquaintances about anybody they know with this disease. You will be surprised how many people around you had it and had been treated for GD. > > I reiterate, please do not bother to respond to this e-mail since, as far as I am concerned, it will be a waste of time. I will not read any replies from now on. > > May God guide you and bless all of you. > > Mirela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Why do I feel like someone marched in here, told us we are all full of crap, and then promptly exited with a slam of the door? Personally, I'm glad this episode is coming to a close. At least I learned a thing or two from your links, ; I read every one -- thanks! I guess this type of thing happens from time to time. >I wish you luck in your health endeavors, and for whoever will end up on >this group and read I will add a word of caution. Please go and get 2-3 >doctors' opinions, and take the opinions of the people here with a grain >of salt, since I am sure not too many of them have good medical backgrounds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 My thoughts exactly . My first thoughts was, this was merely a 'plant' to see what type of reactions they'd get. there was plenty of info provided, and yet this person calmly took their stance which was they did the best they could for themselves. People like that are not looking for info or help, they are looking for a debate. I've seen many posts by people who've had RAI, and they accept it, and move on with their lives....regardless, but I'm not so sure this person was as confident that they did the right thing for themself, even though that was the claim. I think as time goes by, in later years, there could be a different scenario unfold. I don't see any harm in people being as passionate about not having RAI as he/she was in justifying why it was done and how it saved his/her life. I'm sure at the time, that is what the dr most assuredly promised them and they most likely believed. :-( Sandy~Houston On Fri, 29 Aug 2003 12:17:46 -0400 Conner wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 My thoughts exactly . My first thoughts was, this was merely a 'plant' to see what type of reactions they'd get. there was plenty of info provided, and yet this person calmly took their stance which was they did the best they could for themselves. People like that are not looking for info or help, they are looking for a debate. I've seen many posts by people who've had RAI, and they accept it, and move on with their lives....regardless, but I'm not so sure this person was as confident that they did the right thing for themself, even though that was the claim. I think as time goes by, in later years, there could be a different scenario unfold. I don't see any harm in people being as passionate about not having RAI as he/she was in justifying why it was done and how it saved his/her life. I'm sure at the time, that is what the dr most assuredly promised them and they most likely believed. :-( Sandy~Houston On Fri, 29 Aug 2003 12:17:46 -0400 Conner wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Hi Everyone, I really feel that Mirela was justifying RAI more for herself than for anyone else. In her past posts (which I went back and read) she really didn't seem happy with her choice in RAI as she is now suffering some of the consequences in TED and being very hypo. Her justification for choosing RAI was more likely for her than for anyone else. That's why I get a bit frustrated when someone new joins the group and after only visit to an endo they're being told they should have RAI. I'm sorry Mirela felt attacked here on the list. Most likely she had been poorly managed by a doctor she had trusted while on ATDs and that's why she went for the RAI. Now she justifies that decision to herself over and over. She is right though, I'm amazed at how many people have GD and are being treated for it or have been treated for it. Since becoming a GD sufferer myself I have met a few people with the disease. Some have had RAI and some are doing ATDs. The person I know best who has had RAI is my mother-in-law. Before being diagnosed myself in 1997 I never knew she had had RAI. So Mirela is right, you might be surprised by how many people have had it and been " treated " for it. My MIL doesn't talk much about it though. All I know is that she was very, very sick after she had RAI. I don't have many details about it as she doesn't seem to want to talk about it all that much. My husband just remembers her being really sick for a while after she had been treated. And it was tough for her to do all the things with he and his brother that she used to do before her treatment. Guess she was tired all the time and was easily run down. I too hope that this whole debate will help someone else in their decision, but in a different way than Mirela hopes that. Like I said before I had such a strong " knee-jerk " reaction against RAI when I heard about it that I knew my instinct had to be right. At first all I could find was that after RAI you'll be hypo and need replacement hormone. So I started researching that. Then I started looking for other things that could go wrong if I were to have RAI and found that my first instinct was right on! in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Hi Everyone, I really feel that Mirela was justifying RAI more for herself than for anyone else. In her past posts (which I went back and read) she really didn't seem happy with her choice in RAI as she is now suffering some of the consequences in TED and being very hypo. Her justification for choosing RAI was more likely for her than for anyone else. That's why I get a bit frustrated when someone new joins the group and after only visit to an endo they're being told they should have RAI. I'm sorry Mirela felt attacked here on the list. Most likely she had been poorly managed by a doctor she had trusted while on ATDs and that's why she went for the RAI. Now she justifies that decision to herself over and over. She is right though, I'm amazed at how many people have GD and are being treated for it or have been treated for it. Since becoming a GD sufferer myself I have met a few people with the disease. Some have had RAI and some are doing ATDs. The person I know best who has had RAI is my mother-in-law. Before being diagnosed myself in 1997 I never knew she had had RAI. So Mirela is right, you might be surprised by how many people have had it and been " treated " for it. My MIL doesn't talk much about it though. All I know is that she was very, very sick after she had RAI. I don't have many details about it as she doesn't seem to want to talk about it all that much. My husband just remembers her being really sick for a while after she had been treated. And it was tough for her to do all the things with he and his brother that she used to do before her treatment. Guess she was tired all the time and was easily run down. I too hope that this whole debate will help someone else in their decision, but in a different way than Mirela hopes that. Like I said before I had such a strong " knee-jerk " reaction against RAI when I heard about it that I knew my instinct had to be right. At first all I could find was that after RAI you'll be hypo and need replacement hormone. So I started researching that. Then I started looking for other things that could go wrong if I were to have RAI and found that my first instinct was right on! in MA USA Graves since March 1997 Currently on 2 PTU tablets per day Was in remission from 2000-2003 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 , The worst part of all is that she has been sick all this time and has still refused our last offer of help. Even in the middle of her tirade, you and I tried to help her see that her new TSH of 8 , down from 48 is still hypo, and that any eye surgery at this time will be disastrous. I remember being kept hypo for too long, and the depression, a natural chemical process caused by the low thyroid, also turned to a sort of psychosis when I was there too. Problem is after such a long time in that condition our reality is warped, and until her thyroid numbers are corrected it is next to impossible to understand what has happened. In the meantime she will continue to feel attacked or misunderstood by everyone in her life. So as upset as she made me feel telling the young couple all the mis-information, I still hope she can eventually work her way back up out of this. Hypo really is hell. And our bodies ache so bad every second of the day and night, even that starts to seem like what normal is always going to be. Some how, we can only hope she will get the help she needs. -Pam L- 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
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