Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 It is a good study from U of Chicago, where thyroid disease research is rated at a very high level. If you read this part, which is specific about RAI, The responses of PBMC from Graves' patients before RAI therapy were less than those in the presurgical group. Six to 8 weeks after RAI therapy, the number of patients responding to any peptide and the average number of recognized peptides increased. Three to 6 months after RAI, T cell responses to TSHR peptides were less than those 6-8 weeks after RAI therapy, but still higher than the values on day 0. You can look at it from two different aspects, 1. It is increased in the RAI groups after RAI, if you only compare day 0 to 6-8weeks or day to 6 months, which could be alarming in a certain degree. The increase can be explained that body makes more antibody when more antigen is presented after RAI. But the question is whether the antigen presence is an ongoing process after RAI. If it is a long lasting process, then RAI would be dangerous. 2. It is decreased from 6-8 weeks to 6 months, which is encouraging that there is a trend for dcreasing. I think if they follow up these patients for a bit long period time, which I would think they will follow them up , it might be clear by then if the level of antibody has increased of decreased. That will give us a better answer. So it is hard to say, right? I agree that ATD should come to the first in terms of choosing treatment options. But RAI might should be considered if ATD did not work out. For people who compare RAI treatment as nuclear fallout, I do not think I need to say further except a suggestion to them to get a bit more education about radiation, by the way, do they use microwave oven? good talking with you, Sheila! Best wishes! Liang > This is a study which supports your position Terry and appears to be a good > quality study. It gives research evidence for the anecdotal experiences of > the folks described by you below: > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_u > ids=7543112 & dopt=Abstract> & db=PubMed & list_uids=7543112 & dopt=Abstract > > It further supports many members' caution that we use RAI with great caution > and only as a last resort. > > Sheila > > > > > Re: for Liang > > > > Unfortunately, Laurie, you joined at a time when someone on a > > mission also > >> joined. Someone who likes to go to message boards and start > > trouble. > > what does that mean?? > > Liang, > > It means that some members of the group think you are working very, very > hard to convince us that RAI is a normal and right course of action to take. > As I said to you when you first wrote to me, there is an educational aspect > to the group--we all like to learn, sometimes argue a bit, too. But there is > one difference for many of us from what you've just been through: we've > seen, again and again over the years we've been a group, people come in who > (as has been said a few times in other posts, yes?) were rushed into RAI > uninformed, and then not cared for properly. We have been through watching a > few people come close to, or arrive at a point of falling into a coma from > this mistreatment. We have had people come to the group miserable because of > RAI induced infertility, or eye problems that have adversely affected their > lives, to the point of not being able to see straight, drive, work for a > living. We have heard, again and again, how group members after RAI have had > their lives compromised--how they can't get the energy up to take care of > their children anymore, or clean their house, or go to work. We have seen > many desperate people here, who have had RAI. We have seen these things, > Liang, and NOTHING you show us by way of research speaks louder than such > misery as we have seen, from people blithely following incompetent doctors > down the primrose path and then waking up with their lives compromised. > > I encouraged you to share here, because you went into RAI with your eyes > open. But your trying to convince others that RAI might be right for them, > too, will fall on deaf ears here. If someone's had it already, we will > support and help them. Many, many of the members of this group have had RAI. > But (speaking for myself and including others who've expressed the same > opinion already) we will NOT be advocates for it, and that is because, with > what we have seen of people coming through this group after RAI, we remain > completely unconvinced that it is a correct and valid treatment except as a > last resort, where all else has failed. People in the group have pointed out > again and again the one salient fact: Graves Disease is NOT a disease OF the > thyroid, but a disease of the IMMUNE SYSTEM that causes the immune system to > attack the thyroid. So regardless of the fact that RAI " cures " GD by > rendering the thyroid useless, it doesn't, in fact cure GD at all-- and for > many people the immune disorder that has manifested as GD will simply attack > elsewhere, when the thyroid is gone. > > As I said before, I encourage you to stay with this group, or at least check > in periodically. Let us know your progress as your thyroid dies. let us know > how you feel, when you have to find the right dose of replacement > hormone--is it an easy thing? Is your quality of life the same as it once > was? You have to walk in your own shoes for a while, Liang, before you can > try to convince others to try them on. And you've only just taken a few baby > steps at this point. You may be a scientist, you may be logical, but your > posts and surveys lack that one important part that this group deals with > every day. The real effect of the disease and the treatment on the people in > the group. > > > Best to you, > > Terry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 It is a good study from U of Chicago, where thyroid disease research is rated at a very high level. If you read this part, which is specific about RAI, The responses of PBMC from Graves' patients before RAI therapy were less than those in the presurgical group. Six to 8 weeks after RAI therapy, the number of patients responding to any peptide and the average number of recognized peptides increased. Three to 6 months after RAI, T cell responses to TSHR peptides were less than those 6-8 weeks after RAI therapy, but still higher than the values on day 0. You can look at it from two different aspects, 1. It is increased in the RAI groups after RAI, if you only compare day 0 to 6-8weeks or day to 6 months, which could be alarming in a certain degree. The increase can be explained that body makes more antibody when more antigen is presented after RAI. But the question is whether the antigen presence is an ongoing process after RAI. If it is a long lasting process, then RAI would be dangerous. 2. It is decreased from 6-8 weeks to 6 months, which is encouraging that there is a trend for dcreasing. I think if they follow up these patients for a bit long period time, which I would think they will follow them up , it might be clear by then if the level of antibody has increased of decreased. That will give us a better answer. So it is hard to say, right? I agree that ATD should come to the first in terms of choosing treatment options. But RAI might should be considered if ATD did not work out. For people who compare RAI treatment as nuclear fallout, I do not think I need to say further except a suggestion to them to get a bit more education about radiation, by the way, do they use microwave oven? good talking with you, Sheila! Best wishes! Liang > This is a study which supports your position Terry and appears to be a good > quality study. It gives research evidence for the anecdotal experiences of > the folks described by you below: > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_u > ids=7543112 & dopt=Abstract> & db=PubMed & list_uids=7543112 & dopt=Abstract > > It further supports many members' caution that we use RAI with great caution > and only as a last resort. > > Sheila > > > > > Re: for Liang > > > > Unfortunately, Laurie, you joined at a time when someone on a > > mission also > >> joined. Someone who likes to go to message boards and start > > trouble. > > what does that mean?? > > Liang, > > It means that some members of the group think you are working very, very > hard to convince us that RAI is a normal and right course of action to take. > As I said to you when you first wrote to me, there is an educational aspect > to the group--we all like to learn, sometimes argue a bit, too. But there is > one difference for many of us from what you've just been through: we've > seen, again and again over the years we've been a group, people come in who > (as has been said a few times in other posts, yes?) were rushed into RAI > uninformed, and then not cared for properly. We have been through watching a > few people come close to, or arrive at a point of falling into a coma from > this mistreatment. We have had people come to the group miserable because of > RAI induced infertility, or eye problems that have adversely affected their > lives, to the point of not being able to see straight, drive, work for a > living. We have heard, again and again, how group members after RAI have had > their lives compromised--how they can't get the energy up to take care of > their children anymore, or clean their house, or go to work. We have seen > many desperate people here, who have had RAI. We have seen these things, > Liang, and NOTHING you show us by way of research speaks louder than such > misery as we have seen, from people blithely following incompetent doctors > down the primrose path and then waking up with their lives compromised. > > I encouraged you to share here, because you went into RAI with your eyes > open. But your trying to convince others that RAI might be right for them, > too, will fall on deaf ears here. If someone's had it already, we will > support and help them. Many, many of the members of this group have had RAI. > But (speaking for myself and including others who've expressed the same > opinion already) we will NOT be advocates for it, and that is because, with > what we have seen of people coming through this group after RAI, we remain > completely unconvinced that it is a correct and valid treatment except as a > last resort, where all else has failed. People in the group have pointed out > again and again the one salient fact: Graves Disease is NOT a disease OF the > thyroid, but a disease of the IMMUNE SYSTEM that causes the immune system to > attack the thyroid. So regardless of the fact that RAI " cures " GD by > rendering the thyroid useless, it doesn't, in fact cure GD at all-- and for > many people the immune disorder that has manifested as GD will simply attack > elsewhere, when the thyroid is gone. > > As I said before, I encourage you to stay with this group, or at least check > in periodically. Let us know your progress as your thyroid dies. let us know > how you feel, when you have to find the right dose of replacement > hormone--is it an easy thing? Is your quality of life the same as it once > was? You have to walk in your own shoes for a while, Liang, before you can > try to convince others to try them on. And you've only just taken a few baby > steps at this point. You may be a scientist, you may be logical, but your > posts and surveys lack that one important part that this group deals with > every day. The real effect of the disease and the treatment on the people in > the group. > > > Best to you, > > Terry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 I acknowledge your point regarding the long-term outcome of RAI (still potentially positive). I believe that this study supports the short-term experience of many on the list who had RAI and found that their disease course was not improved, only altered. My early reading of the research suggests to me that science is not far enough along in its ability to be able to predict the outcome of many of these treatments. [Though I have seen studies suggesting that measurement of various antibodies' levels prior to RAI, for instance, and HLA typing, may help predict who will become hypo or develop/exacerbate TED, I haven't heard any anecdotal evidence here that suggests such labwork was pursued prior to treatment for those treated with RAI on this list. And will comment further on this.] Personally, I would advocate for all patients being treated as conservatively as possible, with all efforts to return and preserve a euthyroid status being undertaken with full consideration of their risk/benefit ratio taken into account. Only conservative treatment failure in the face of serious risk (atrial fibrillation, thyroid storm, optic nerve damage) should warrant treatments that carry the risk of developing another long term illness (hypothyroidism). My own limited experience with thyroid disease (hypoactive for 3 years and recently TED) suggests that the current problems in the North American medical climate adversely affect this treatment goal. Doctors, hobbled by the need to see as many patients as possible in as short a time as possible, are not taking enough time to evaluate, educate and partner with their patients for optimal conservative management of the disease. For example, though I currently have a mild form of TED, my general symptoms over the last week suggest to me that I am rapidly becoming hypothyroid (weight gain of 3 lbs. this week, badly swollen face, morning headaches,a few hives, aching all over, hair loss). This morning I awoke with sore eyes (both, when previously only one had been involved). I suspect that elevated TSH is triggering this, but, I know that to get blood tests done and medication altered is going to be a huge struggle, since the ultrasound confirming the diagnosis is not scheduled until November 3 and the TED ophtho's diagnosis contradicts the endo's. I share this because, Liang, the cumulative evidence from all of the research does not suggest a definitive enough guideline for treatment protocol to warrant the North American physicians' preference for RAI. However, the difficulties inherent in partnering with patients for conservative treatment would require much more involvement (time and effort) on the part of physicians than they are able to provide in the current health care climate. I believe that this probably contributes to a desire to find a 'quick fix'. Since they don't have to live with the scourge of hypothyroidism and probably consider its symptoms to be neither debilitating nor life-threatening in most instances, this likely seems an acceptable choice. Personally, I hate being hypo. And I find that trying to attain a euthyroid status matters a whole lot more to me than my physician's seem able to appreciate. Hormones, their function and dysfunction, is still largely shrouded in mystery. Westernized medicine is effective in treating dramatic, life-threatening disease events or trauma. It's not good at addressing chronic disease or anything subtle. RAI is a dramatic response to a disorder that is probably best managed through 'nudging' back to center, rather than ablating the organ involved. We didn't think that sugical removal of tonsils was a big deal either. Or vaccination. We're learning otherwise. Appreciating you, and this discussion, Sheila Appreciating you, Sheila Re: for Liang > > > > Unfortunately, Laurie, you joined at a time when someone on a > > mission also > >> joined. Someone who likes to go to message boards and start > > trouble. > > what does that mean?? > > Liang, > > It means that some members of the group think you are working very, very > hard to convince us that RAI is a normal and right course of action to take. > As I said to you when you first wrote to me, there is an educational aspect > to the group--we all like to learn, sometimes argue a bit, too. But there is > one difference for many of us from what you've just been through: we've > seen, again and again over the years we've been a group, people come in who > (as has been said a few times in other posts, yes?) were rushed into RAI > uninformed, and then not cared for properly. We have been through watching a > few people come close to, or arrive at a point of falling into a coma from > this mistreatment. We have had people come to the group miserable because of > RAI induced infertility, or eye problems that have adversely affected their > lives, to the point of not being able to see straight, drive, work for a > living. We have heard, again and again, how group members after RAI have had > their lives compromised--how they can't get the energy up to take care of > their children anymore, or clean their house, or go to work. We have seen > many desperate people here, who have had RAI. We have seen these things, > Liang, and NOTHING you show us by way of research speaks louder than such > misery as we have seen, from people blithely following incompetent doctors > down the primrose path and then waking up with their lives compromised. > > I encouraged you to share here, because you went into RAI with your eyes > open. But your trying to convince others that RAI might be right for them, > too, will fall on deaf ears here. If someone's had it already, we will > support and help them. Many, many of the members of this group have had RAI. > But (speaking for myself and including others who've expressed the same > opinion already) we will NOT be advocates for it, and that is because, with > what we have seen of people coming through this group after RAI, we remain > completely unconvinced that it is a correct and valid treatment except as a > last resort, where all else has failed. People in the group have pointed out > again and again the one salient fact: Graves Disease is NOT a disease OF the > thyroid, but a disease of the IMMUNE SYSTEM that causes the immune system to > attack the thyroid. So regardless of the fact that RAI " cures " GD by > rendering the thyroid useless, it doesn't, in fact cure GD at all-- and for > many people the immune disorder that has manifested as GD will simply attack > elsewhere, when the thyroid is gone. > > As I said before, I encourage you to stay with this group, or at least check > in periodically. Let us know your progress as your thyroid dies. let us know > how you feel, when you have to find the right dose of replacement > hormone--is it an easy thing? Is your quality of life the same as it once > was? You have to walk in your own shoes for a while, Liang, before you can > try to convince others to try them on. And you've only just taken a few baby > steps at this point. You may be a scientist, you may be logical, but your > posts and surveys lack that one important part that this group deals with > every day. The real effect of the disease and the treatment on the people in > the group. > > > Best to you, > > Terry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 Sheila, Your points are well-taken. As I said, if you can, please keep your thyroid gland. Just hate the fact that people just jump in to say all the bad things about RAI which is not based on facts from large scale. RAI can be contraversy. But benefits are also evident in many patients, including the report from studies as well as my mom and many of my endo's patients. Some misleading facts can lead people scared instead of cautious about the decision with RAI when people do need them. Biased opinions can lead some of patients to eventually end up to the need for liver or bone marrow transplant. That is my whole point. and it is really a pleasure to chat with you. Best wishes. Liang > > This is a study which supports your position Terry and appears to > be a good > > quality study. It gives research evidence for the anecdotal > experiences of > > the folks described by you below: > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve > > <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? > cmd=Retrieve & db=PubMed & list_u > > ids=7543112 & dopt=Abstract> > & db=PubMed & list_uids=7543112 & dopt=Abstract > > > > It further supports many members' caution that we use RAI with > great caution > > and only as a last resort. > > > > Sheila > > > > > > > > > > Re: for Liang > > > > > > > Unfortunately, Laurie, you joined at a time when someone on a > > > mission also > > >> joined. Someone who likes to go to message boards and start > > > trouble. > > > what does that mean?? > > > > Liang, > > > > It means that some members of the group think you are working very, > very > > hard to convince us that RAI is a normal and right course of action > to take. > > As I said to you when you first wrote to me, there is an > educational aspect > > to the group--we all like to learn, sometimes argue a bit, too. But > there is > > one difference for many of us from what you've just been through: > we've > > seen, again and again over the years we've been a group, people > come in who > > (as has been said a few times in other posts, yes?) were rushed > into RAI > > uninformed, and then not cared for properly. We have been through > watching a > > few people come close to, or arrive at a point of falling into a > coma from > > this mistreatment. We have had people come to the group miserable > because of > > RAI induced infertility, or eye problems that have adversely > affected their > > lives, to the point of not being able to see straight, drive, work > for a > > living. We have heard, again and again, how group members after RAI > have had > > their lives compromised--how they can't get the energy up to take > care of > > their children anymore, or clean their house, or go to work. We > have seen > > many desperate people here, who have had RAI. We have seen these > things, > > Liang, and NOTHING you show us by way of research speaks louder > than such > > misery as we have seen, from people blithely following incompetent > doctors > > down the primrose path and then waking up with their lives > compromised. > > > > I encouraged you to share here, because you went into RAI with your > eyes > > open. But your trying to convince others that RAI might be right > for them, > > too, will fall on deaf ears here. If someone's had it already, we > will > > support and help them. Many, many of the members of this group have > had RAI. > > But (speaking for myself and including others who've expressed the > same > > opinion already) we will NOT be advocates for it, and that is > because, with > > what we have seen of people coming through this group after RAI, we > remain > > completely unconvinced that it is a correct and valid treatment > except as a > > last resort, where all else has failed. People in the group have > pointed out > > again and again the one salient fact: Graves Disease is NOT a > disease OF the > > thyroid, but a disease of the IMMUNE SYSTEM that causes the immune > system to > > attack the thyroid. So regardless of the fact that RAI " cures " GD by > > rendering the thyroid useless, it doesn't, in fact cure GD at all- - > and for > > many people the immune disorder that has manifested as GD will > simply attack > > elsewhere, when the thyroid is gone. > > > > As I said before, I encourage you to stay with this group, or at > least check > > in periodically. Let us know your progress as your thyroid dies. > let us know > > how you feel, when you have to find the right dose of replacement > > hormone--is it an easy thing? Is your quality of life the same as > it once > > was? You have to walk in your own shoes for a while, Liang, before > you can > > try to convince others to try them on. And you've only just taken a > few baby > > steps at this point. You may be a scientist, you may be logical, > but your > > posts and surveys lack that one important part that this group > deals with > > every day. The real effect of the disease and the treatment on the > people in > > the group. > > > > > > Best to you, > > > > Terry > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2003 Report Share Posted October 25, 2003 I agree with you. Please, can you help me by getting full text access to the following article: Title: Prediction of the Progression of Thyroid-Associated Ophthalmopathy at First Ophthalmologic Examination: Use of a Neural Network Author(s): Salvi ; e Dazzi ; Isabella Pellistri ; Fabrizio Neri Source: Thyroid <http://fernando.ingentaselect.com/vl=1997239/cl=13/nw=1/rpsv/cw/mal/1050725 6/contp1.htm> Volume: 12 Number: 3 Page: 233 -- 236 DOI: 10.1089/105072502753600197 Publisher: Ann Liebert, Inc. Abstract: In the present work we analyzed patients with thyroid-associated ophthalmopathy (TAO) at various clinical stages of disease progression and implemented a model of neural analysis for disease classification and prediction of progression. We studied 246 patients (group 1), seen only once because they had absent, minimal, or inactive TAO and 152 patients (group 2), seen two or more times because of active and/or progressive TAO. The ophthalmologic assessment included: (1) lid fissure measurement; (2) Hertel; (3) color vision; (4) cover test and Hess screen; (5) visual acuity; (6) tonometry; (7) fundus examination; (8) visual field; (9) orbital computed tomography (CT) scan or ultrasound. A back propagation model of neural network was based on the relative variations of 13 clinical eye signs (input variables) for classification and prediction of disease progression (output variable). Approximately 300 eyes (20%) were randomly selected as a test group. Correlation between expected and calculated patients' classification was highly significant (p < 0.00001). Concordance between clinical assessment and the neural network prediction was obtained in 78 of 117 eyes (67%). We have developed a neural model that allows classification of TAO and preliminary prediction of disease progression at the first clinical examination. The results are validating the classification into the two groups on which our initial assumption was based. Copyright C by Ann Liebert, Inc. 2003 Reference Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 -You are welcome! I absolutely LOVED working peds. I started as a " baby nurse " not even two yrs out of school and stayed for 10 yrs. It is a hard place to work and I remember going home in tears alot, especially in the beginning because seeing these children suffer broke my heart (I worked with alot of CF'ers)...The last straw came two yrs ago when I lost a good friend who was my former pt...he was 22 yrs old with CF and his death was particularily cruel: He had recieved a double lung transplant 2 yrs prior and the CF attacked his new lungs, robbing him of the 10-20 yrs he should have had. By the time he went, he was at an adult hospital, and I was there when he died...I decided my heart hurt too badly and moved on.. For the past two yrs, I have worked in telecare. It is a hugely evolving field in my province, and I was lucky enough to get in on the ground floor so to speak. I now do charge,presentations, preceptoring, as well as am putting together a proposal for a presentation to participate in orientations of new staff... I DO miss the face to face contact, which is why I got a casual job in mat ( I learned I got the position right after I found out I was preggo...lol, ironic)...Unfortunately, due to the bleeding I had in the first trimester, I had to let that job go...Stress wasn't helping matters. Anyway, you are one busy lady, and I have to say, I admire critical care staff TREMENDOUSLY. I could never work in ER... Good on ya! Hugs, -- In OSSG-pregnant , " Sheila Renae " wrote: > thank you ! Alot of the time, I think I may explain something too > technical, but I try to remember not everyone is in the med > profession! > > I commend you for your peds interest. That is one area I couldn't > work! I did ER for 13 years and decided on a break from it and > switched to OB/NICU. Now I am just working PRN in 2 hospitals (2 > states actually). One in ER and the other L&D. lol > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Is Sheila feeling any better? Agape, brandijacksondavis wrote: Hey Jody/All, I was out for a while... I get back, and where's Carol?... she hasn't posted lately... is her dog ok? Agape, For information on the Specific Carbohydrate Diet, please read the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following websites: http://www.breakingtheviciouscycle.info and http://www.pecanbread.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 I haven't heard from Sheila in quite some time. I've written, but gotten no response. My guess is that she (or someone in her family) is still sick. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
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