Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Jody, I think we're on the same mental continuum! As I fell asleep last night, I was thinking that the first page would be " top 10 list " format--but that we would all need the back-up of more complete explanations on pg. 2 (or 3).. I'll get to work! Terry > > Reply-To: graves_support > Date: Sun, 10 Feb 2002 12:48:30 -0500 > To: graves_support > Subject: Re: Frustrated > > Hi Terry, > What wonderful ideas you have! The symptoms list has been invaluable for > the new people, I now keep it on my desk top to send them directly. > > I think this idea is just as wonderful. I am thinking on what I would like > to see on it too. I know one of them would be > > It is a MYTH that hypO is easier to treat. > > And the one about graves is an immune system disease NOT a thyroid disease > is also a must. As for any others, most will probably be the same as you > have listed and what Elaine has done. > > I do have one suggestion though. If this is going to be used with doctors, > it is going to become another effort by us to train doctors into a different > mode of treating. I agree, to catch their eyes, the list must be short and > to the point...but...I think each point needs to be explained as shortly as > possible, so *maybe* having a second or second and third page attachment to > it with explanations they can't argue with would be a good idea. Even if > they don't read those in front of patients, hopefully they will take the > time and read it when we are out of sight. I think for many, reading our > reasons would be like the 'curiosity killed the cat, satisfaction brought it > back' kind of thing. > > The danger with one liners only is that they can then argue every point made > on them with 2/3 sentences to refute everything we come up with. With > longer explanations (2/3 sentences of our own) on a separate page would stop > them in their tracks. > > But this is just my take on it. I know that, even though my doctor does not > do RAI on anyone anymore, I would take it in to her to share with her > colleagues anyhow > > I'd be happy to work on this with you, as if you really need my help but > if you do, let me know. > > Thank you so much for this idea, it is truly excellent! And Elaine... maybe > another graves book on some of the things we have in the archives, like this > list, the extended symptoms list, Do's and Don'ts for graves, for the eye > disease...some simple ideas? Maybe that is really reaching on my part, but > I do love your books > TTYL > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > > ------------------------------------- > 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 February 10, 2002 Report Share Posted February 10, 2002 Jody, I think we're on the same mental continuum! As I fell asleep last night, I was thinking that the first page would be " top 10 list " format--but that we would all need the back-up of more complete explanations on pg. 2 (or 3).. I'll get to work! Terry > > Reply-To: graves_support > Date: Sun, 10 Feb 2002 12:48:30 -0500 > To: graves_support > Subject: Re: Frustrated > > Hi Terry, > What wonderful ideas you have! The symptoms list has been invaluable for > the new people, I now keep it on my desk top to send them directly. > > I think this idea is just as wonderful. I am thinking on what I would like > to see on it too. I know one of them would be > > It is a MYTH that hypO is easier to treat. > > And the one about graves is an immune system disease NOT a thyroid disease > is also a must. As for any others, most will probably be the same as you > have listed and what Elaine has done. > > I do have one suggestion though. If this is going to be used with doctors, > it is going to become another effort by us to train doctors into a different > mode of treating. I agree, to catch their eyes, the list must be short and > to the point...but...I think each point needs to be explained as shortly as > possible, so *maybe* having a second or second and third page attachment to > it with explanations they can't argue with would be a good idea. Even if > they don't read those in front of patients, hopefully they will take the > time and read it when we are out of sight. I think for many, reading our > reasons would be like the 'curiosity killed the cat, satisfaction brought it > back' kind of thing. > > The danger with one liners only is that they can then argue every point made > on them with 2/3 sentences to refute everything we come up with. With > longer explanations (2/3 sentences of our own) on a separate page would stop > them in their tracks. > > But this is just my take on it. I know that, even though my doctor does not > do RAI on anyone anymore, I would take it in to her to share with her > colleagues anyhow > > I'd be happy to work on this with you, as if you really need my help but > if you do, let me know. > > Thank you so much for this idea, it is truly excellent! And Elaine... maybe > another graves book on some of the things we have in the archives, like this > list, the extended symptoms list, Do's and Don'ts for graves, for the eye > disease...some simple ideas? Maybe that is really reaching on my part, but > I do love your books > TTYL > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > > ------------------------------------- > 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 February 10, 2002 Report Share Posted February 10, 2002 Jody, I think we're on the same mental continuum! As I fell asleep last night, I was thinking that the first page would be " top 10 list " format--but that we would all need the back-up of more complete explanations on pg. 2 (or 3).. I'll get to work! Terry > > Reply-To: graves_support > Date: Sun, 10 Feb 2002 12:48:30 -0500 > To: graves_support > Subject: Re: Frustrated > > Hi Terry, > What wonderful ideas you have! The symptoms list has been invaluable for > the new people, I now keep it on my desk top to send them directly. > > I think this idea is just as wonderful. I am thinking on what I would like > to see on it too. I know one of them would be > > It is a MYTH that hypO is easier to treat. > > And the one about graves is an immune system disease NOT a thyroid disease > is also a must. As for any others, most will probably be the same as you > have listed and what Elaine has done. > > I do have one suggestion though. If this is going to be used with doctors, > it is going to become another effort by us to train doctors into a different > mode of treating. I agree, to catch their eyes, the list must be short and > to the point...but...I think each point needs to be explained as shortly as > possible, so *maybe* having a second or second and third page attachment to > it with explanations they can't argue with would be a good idea. Even if > they don't read those in front of patients, hopefully they will take the > time and read it when we are out of sight. I think for many, reading our > reasons would be like the 'curiosity killed the cat, satisfaction brought it > back' kind of thing. > > The danger with one liners only is that they can then argue every point made > on them with 2/3 sentences to refute everything we come up with. With > longer explanations (2/3 sentences of our own) on a separate page would stop > them in their tracks. > > But this is just my take on it. I know that, even though my doctor does not > do RAI on anyone anymore, I would take it in to her to share with her > colleagues anyhow > > I'd be happy to work on this with you, as if you really need my help but > if you do, let me know. > > Thank you so much for this idea, it is truly excellent! And Elaine... maybe > another graves book on some of the things we have in the archives, like this > list, the extended symptoms list, Do's and Don'ts for graves, for the eye > disease...some simple ideas? Maybe that is really reaching on my part, but > I do love your books > TTYL > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > > ------------------------------------- > 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 February 10, 2002 Report Share Posted February 10, 2002 Terry, Isn't it neat how all of our great minds think alike ;-) You know, I *almost* feel sorry for our doctors <grin> Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Terry, Isn't it neat how all of our great minds think alike ;-) You know, I *almost* feel sorry for our doctors <grin> Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Terry, Isn't it neat how all of our great minds think alike ;-) You know, I *almost* feel sorry for our doctors <grin> Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Terry - I've got an article that talks about some of these very things that Elaine mentions. It might be good for a reference, if you think we should have it. It's actually a very interesting study - and a little scary, too. So far the 3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the D.O. was the first and only to admit that RAI has a lot of risk factors associated with it and he wouldn't recommend it. If he wasn't so hard to get into, I'd go back and see him to do my monitoring! The article is called " Cancer Mortality Following Treatment for Adult Hyperthyroidism " in the Journal of the American Medical Association (JAMA) July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid patients between 1946 - 1964. It does a comparison of the 3 standard treatments for GD. I downloaded it from my local library - it's on their magazine index. Re: Frustrated >I would add that >RAI is absorbed, in smaller amounts, by other organs besides the thyroid, >including breast tissue, the genitals, pancreas, and the gastric mucosa. RAI >causes either cell death or DNA mutations to any cells unfortunate enough to >be at its path length. > >RAI has a short half-life, meaning half of the dose is diminished in about 8 >days. Then half of this dose is diminished in another 8 days. I contaminated >the entire nuclear chemistry department of the lab I worked in after being >ablated, and I continued to have measureable amounts of radioiodine in my >urine for 4 weeks. To say that the dose is quickly depleted is simply not >true. In the meantime we're exposing our families, friends and coworkers to >radioiodine. > >Long term studies show a small but significant increase in certain cancers, >including those of the thyroid gland and small bowel, after RAI. Although the >follicular cells of our thyroid are destroyed, we continue to have a basement >membrane of other cells that can become cancerous. > >There is a small but significant increase in damage to the parathyroid glands >after radioiodine. A number of people experience hypoparathyroidism. > >After RAI, increases in antibody titers affect lab tests, making >hypothyroidism extremely difficult to treat. Patients who had RAI have an >increased risk for developing fibromyalgia, which is also related to >hypothyroidism. I suspect that many of us are kept hypothyroid because of a >poor understanding of lab test interpretation. > >These are off the top of my head, Terry, so I'm sure I can come up with more. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Terry - I've got an article that talks about some of these very things that Elaine mentions. It might be good for a reference, if you think we should have it. It's actually a very interesting study - and a little scary, too. So far the 3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the D.O. was the first and only to admit that RAI has a lot of risk factors associated with it and he wouldn't recommend it. If he wasn't so hard to get into, I'd go back and see him to do my monitoring! The article is called " Cancer Mortality Following Treatment for Adult Hyperthyroidism " in the Journal of the American Medical Association (JAMA) July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid patients between 1946 - 1964. It does a comparison of the 3 standard treatments for GD. I downloaded it from my local library - it's on their magazine index. Re: Frustrated >I would add that >RAI is absorbed, in smaller amounts, by other organs besides the thyroid, >including breast tissue, the genitals, pancreas, and the gastric mucosa. RAI >causes either cell death or DNA mutations to any cells unfortunate enough to >be at its path length. > >RAI has a short half-life, meaning half of the dose is diminished in about 8 >days. Then half of this dose is diminished in another 8 days. I contaminated >the entire nuclear chemistry department of the lab I worked in after being >ablated, and I continued to have measureable amounts of radioiodine in my >urine for 4 weeks. To say that the dose is quickly depleted is simply not >true. In the meantime we're exposing our families, friends and coworkers to >radioiodine. > >Long term studies show a small but significant increase in certain cancers, >including those of the thyroid gland and small bowel, after RAI. Although the >follicular cells of our thyroid are destroyed, we continue to have a basement >membrane of other cells that can become cancerous. > >There is a small but significant increase in damage to the parathyroid glands >after radioiodine. A number of people experience hypoparathyroidism. > >After RAI, increases in antibody titers affect lab tests, making >hypothyroidism extremely difficult to treat. Patients who had RAI have an >increased risk for developing fibromyalgia, which is also related to >hypothyroidism. I suspect that many of us are kept hypothyroid because of a >poor understanding of lab test interpretation. > >These are off the top of my head, Terry, so I'm sure I can come up with more. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Terry - I've got an article that talks about some of these very things that Elaine mentions. It might be good for a reference, if you think we should have it. It's actually a very interesting study - and a little scary, too. So far the 3 docs I've seen (1 endo, 1 D.O., and 1 M.D.) had never heard of it, but the D.O. was the first and only to admit that RAI has a lot of risk factors associated with it and he wouldn't recommend it. If he wasn't so hard to get into, I'd go back and see him to do my monitoring! The article is called " Cancer Mortality Following Treatment for Adult Hyperthyroidism " in the Journal of the American Medical Association (JAMA) July 22, 1998 v280 n4 p347-355. It's a study done on 35,000 hyperthyroid patients between 1946 - 1964. It does a comparison of the 3 standard treatments for GD. I downloaded it from my local library - it's on their magazine index. Re: Frustrated >I would add that >RAI is absorbed, in smaller amounts, by other organs besides the thyroid, >including breast tissue, the genitals, pancreas, and the gastric mucosa. RAI >causes either cell death or DNA mutations to any cells unfortunate enough to >be at its path length. > >RAI has a short half-life, meaning half of the dose is diminished in about 8 >days. Then half of this dose is diminished in another 8 days. I contaminated >the entire nuclear chemistry department of the lab I worked in after being >ablated, and I continued to have measureable amounts of radioiodine in my >urine for 4 weeks. To say that the dose is quickly depleted is simply not >true. In the meantime we're exposing our families, friends and coworkers to >radioiodine. > >Long term studies show a small but significant increase in certain cancers, >including those of the thyroid gland and small bowel, after RAI. Although the >follicular cells of our thyroid are destroyed, we continue to have a basement >membrane of other cells that can become cancerous. > >There is a small but significant increase in damage to the parathyroid glands >after radioiodine. A number of people experience hypoparathyroidism. > >After RAI, increases in antibody titers affect lab tests, making >hypothyroidism extremely difficult to treat. Patients who had RAI have an >increased risk for developing fibromyalgia, which is also related to >hypothyroidism. I suspect that many of us are kept hypothyroid because of a >poor understanding of lab test interpretation. > >These are off the top of my head, Terry, so I'm sure I can come up with more. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 I think one liners are a great idea, but agree that doctors are likely to dismiss them. What about footnotes? Maybe if we all put our heads together we can come up with lots of " thoroughly reputable " references that docs will recognise? I have noticed that if I say I use the internet to get information, I am dismissed out of hand; whereas if I say I have been reading Werner and Ingbar's The Thyroid and other medical texts, I am asked if I am a nurse or have any medical training (to which I have in the past replied, no, but it's not rocket science is it?! - but I was very hyper then!). Anyway, the five main things that assisted my decision to refuse RAI were: 1) I had mild eye involvement and found that RAI generally made it worse. 2) I am still of child bearing age and have no kids yet - there seemed to be at least some controversy about the safety of RAI in this regard, even though the doctors I spoke to assured me RAI was " the best course of action if you are considering having children " - I had read otherwise and did not appreciate being mislead. 3) The statistics showing slightly elevated incidences of cancer in people who have had RAI. 4) I wanted to at least try for remission 5) Medicene seems to be moving quite fast these days with the genome thing and all the advances made in treating HIV and AIDs - I REALLY didn't want to have RAI and hear on the news the following week that scientists had discovered the cure to GD, that I could not participate in because my thyroid was dead - maybe I am dreaming there, but it helped me to delay RAI. One of the things that has amazed me in this entire journey, is that when you REALLY get down to the information with the more up to date doctors, I have found that I have the same information as them, but we come to different conclusions about treatment course. What they are saying often doesn't seem to make sense in the light of what they know and I think this has to do with " the of standard care " approach to medicine - where doctors do what all the other doctors do, so that if anything goes wrong with the treatment, they can say " well, I only did what any other doctor would have done " . I sympathise, honestly I do, doctors face enormous responsibilities in their work, but I do believe this butt covering culture is part of what stops things changing for so long! Ranting again DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: Frustrated >Date: Sun, 10 Feb 2002 12:48:30 -0500 > >Hi Terry, >What wonderful ideas you have! The symptoms list has been invaluable for >the new people, I now keep it on my desk top to send them directly. > >I think this idea is just as wonderful. I am thinking on what I would like >to see on it too. I know one of them would be > >It is a MYTH that hypO is easier to treat. > >And the one about graves is an immune system disease NOT a thyroid disease >is also a must. As for any others, most will probably be the same as you >have listed and what Elaine has done. > >I do have one suggestion though. If this is going to be used with doctors, >it is going to become another effort by us to train doctors into a >different >mode of treating. I agree, to catch their eyes, the list must be short and >to the point...but...I think each point needs to be explained as shortly as >possible, so *maybe* having a second or second and third page attachment to >it with explanations they can't argue with would be a good idea. Even if >they don't read those in front of patients, hopefully they will take the >time and read it when we are out of sight. I think for many, reading our >reasons would be like the 'curiosity killed the cat, satisfaction brought >it >back' kind of thing. > >The danger with one liners only is that they can then argue every point >made >on them with 2/3 sentences to refute everything we come up with. With >longer explanations (2/3 sentences of our own) on a separate page would >stop >them in their tracks. > >But this is just my take on it. I know that, even though my doctor does >not >do RAI on anyone anymore, I would take it in to her to share with her >colleagues anyhow > >I'd be happy to work on this with you, as if you really need my help but >if you do, let me know. > >Thank you so much for this idea, it is truly excellent! And Elaine... >maybe >another graves book on some of the things we have in the archives, like >this >list, the extended symptoms list, Do's and Don'ts for graves, for the eye >disease...some simple ideas? Maybe that is really reaching on my part, but >I do love your books >TTYL >Jody > > > >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx > > > >------------------------------------- >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 February 10, 2002 Report Share Posted February 10, 2002 I think one liners are a great idea, but agree that doctors are likely to dismiss them. What about footnotes? Maybe if we all put our heads together we can come up with lots of " thoroughly reputable " references that docs will recognise? I have noticed that if I say I use the internet to get information, I am dismissed out of hand; whereas if I say I have been reading Werner and Ingbar's The Thyroid and other medical texts, I am asked if I am a nurse or have any medical training (to which I have in the past replied, no, but it's not rocket science is it?! - but I was very hyper then!). Anyway, the five main things that assisted my decision to refuse RAI were: 1) I had mild eye involvement and found that RAI generally made it worse. 2) I am still of child bearing age and have no kids yet - there seemed to be at least some controversy about the safety of RAI in this regard, even though the doctors I spoke to assured me RAI was " the best course of action if you are considering having children " - I had read otherwise and did not appreciate being mislead. 3) The statistics showing slightly elevated incidences of cancer in people who have had RAI. 4) I wanted to at least try for remission 5) Medicene seems to be moving quite fast these days with the genome thing and all the advances made in treating HIV and AIDs - I REALLY didn't want to have RAI and hear on the news the following week that scientists had discovered the cure to GD, that I could not participate in because my thyroid was dead - maybe I am dreaming there, but it helped me to delay RAI. One of the things that has amazed me in this entire journey, is that when you REALLY get down to the information with the more up to date doctors, I have found that I have the same information as them, but we come to different conclusions about treatment course. What they are saying often doesn't seem to make sense in the light of what they know and I think this has to do with " the of standard care " approach to medicine - where doctors do what all the other doctors do, so that if anything goes wrong with the treatment, they can say " well, I only did what any other doctor would have done " . I sympathise, honestly I do, doctors face enormous responsibilities in their work, but I do believe this butt covering culture is part of what stops things changing for so long! Ranting again DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: Frustrated >Date: Sun, 10 Feb 2002 12:48:30 -0500 > >Hi Terry, >What wonderful ideas you have! The symptoms list has been invaluable for >the new people, I now keep it on my desk top to send them directly. > >I think this idea is just as wonderful. I am thinking on what I would like >to see on it too. I know one of them would be > >It is a MYTH that hypO is easier to treat. > >And the one about graves is an immune system disease NOT a thyroid disease >is also a must. As for any others, most will probably be the same as you >have listed and what Elaine has done. > >I do have one suggestion though. If this is going to be used with doctors, >it is going to become another effort by us to train doctors into a >different >mode of treating. I agree, to catch their eyes, the list must be short and >to the point...but...I think each point needs to be explained as shortly as >possible, so *maybe* having a second or second and third page attachment to >it with explanations they can't argue with would be a good idea. Even if >they don't read those in front of patients, hopefully they will take the >time and read it when we are out of sight. I think for many, reading our >reasons would be like the 'curiosity killed the cat, satisfaction brought >it >back' kind of thing. > >The danger with one liners only is that they can then argue every point >made >on them with 2/3 sentences to refute everything we come up with. With >longer explanations (2/3 sentences of our own) on a separate page would >stop >them in their tracks. > >But this is just my take on it. I know that, even though my doctor does >not >do RAI on anyone anymore, I would take it in to her to share with her >colleagues anyhow > >I'd be happy to work on this with you, as if you really need my help but >if you do, let me know. > >Thank you so much for this idea, it is truly excellent! And Elaine... >maybe >another graves book on some of the things we have in the archives, like >this >list, the extended symptoms list, Do's and Don'ts for graves, for the eye >disease...some simple ideas? Maybe that is really reaching on my part, but >I do love your books >TTYL >Jody > > > >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx > > > >------------------------------------- >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 February 10, 2002 Report Share Posted February 10, 2002 Dawn Rose, Your number 5 reason >>>5) Medicene seems to be moving quite fast these days with the genome >>>thing and all the advances made in treating HIV and AIDs - I REALLY >>>didn't want to have RAI and hear on the news the following week that >>>scientists had discovered the cure to GD, that I could not participate in >>>because my thyroid was dead - maybe I am dreaming there, but it helped me >>>to delay RAI.<<< is an excellent reason to not have RAI!!! I think this should be our number 1 reason for not having it...and it is an arguement that no reasonable doctor can argue with! Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Hi Doris...I just got a copy from the library. I was researching GD in their online magazine index, and this article came up and I printed it out from there. I don't know if JAMA has a web site that allows you to download old articles, like the NEJM does. I'll have to check it out. I've got mine in print form, so if I can't find it online or you can't get it from a local library, I could probably snail mail you a copy. Let me do a little checking and see if it's available on line somewhere...I'll let you know what I find. Re: Frustrated >, >Hi, is there any way I could get a copy of that article that was in JAMA? > >Thanks, >Doris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Hi Doris...I just got a copy from the library. I was researching GD in their online magazine index, and this article came up and I printed it out from there. I don't know if JAMA has a web site that allows you to download old articles, like the NEJM does. I'll have to check it out. I've got mine in print form, so if I can't find it online or you can't get it from a local library, I could probably snail mail you a copy. Let me do a little checking and see if it's available on line somewhere...I'll let you know what I find. Re: Frustrated >, >Hi, is there any way I could get a copy of that article that was in JAMA? > >Thanks, >Doris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 Hi Doris...I just got a copy from the library. I was researching GD in their online magazine index, and this article came up and I printed it out from there. I don't know if JAMA has a web site that allows you to download old articles, like the NEJM does. I'll have to check it out. I've got mine in print form, so if I can't find it online or you can't get it from a local library, I could probably snail mail you a copy. Let me do a little checking and see if it's available on line somewhere...I'll let you know what I find. Re: Frustrated >, >Hi, is there any way I could get a copy of that article that was in JAMA? > >Thanks, >Doris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I checked out a summary of the article here: http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> The summary, though, shows an increased risk of cancer mortality after treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid cancer only, but they attributed that to the thyroid disease itself. Not really what I wanted to hear. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I checked out a summary of the article here: http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> The summary, though, shows an increased risk of cancer mortality after treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid cancer only, but they attributed that to the thyroid disease itself. Not really what I wanted to hear. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I checked out a summary of the article here: http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> The summary, though, shows an increased risk of cancer mortality after treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid cancer only, but they attributed that to the thyroid disease itself. Not really what I wanted to hear. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 You will find many conflicting things along these lines. But remember, the lowest cancer risk of all our choices is being in remission, or on the very lowest dose of ATDs. I also think one of my hypo symptoms is sitting at the computer and studying stuff like this with endless fascination, and not having the energy to get up and do other things like on a more normal day. So if you are still a bit hypo, think about revisiting this search later, when you are feeling better and can be more objective in your findings. Humm, that doesn't sound right...but maybe you can get my general idea. Just know that the hypo part of this causes us to see things in a more depressed light. And this will pass. -Pam- " Sutherland, Holly " wrote: > I checked out a summary of the article here: > http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html > <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > > The summary, though, shows an increased risk of cancer mortality after > treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid > cancer only, but they attributed that to the thyroid disease itself. Not > really what I wanted to hear. > > Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 You will find many conflicting things along these lines. But remember, the lowest cancer risk of all our choices is being in remission, or on the very lowest dose of ATDs. I also think one of my hypo symptoms is sitting at the computer and studying stuff like this with endless fascination, and not having the energy to get up and do other things like on a more normal day. So if you are still a bit hypo, think about revisiting this search later, when you are feeling better and can be more objective in your findings. Humm, that doesn't sound right...but maybe you can get my general idea. Just know that the hypo part of this causes us to see things in a more depressed light. And this will pass. -Pam- " Sutherland, Holly " wrote: > I checked out a summary of the article here: > http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html > <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > > The summary, though, shows an increased risk of cancer mortality after > treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid > cancer only, but they attributed that to the thyroid disease itself. Not > really what I wanted to hear. > > Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Holly - You really have to see the full text of this article to appreciate it. The summary doesn't really do it justice. The article breaks down the patients into groups depending on what treatment they had. They have cancer stats for the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is where you see some interesting statistics. For example, the summary says that RAI showed a slight increase in thyroid cancer, probably due to the nature of the disease itself. Well, if you look through the actual stats, you might come to a different conclusion. The standardized mortality rate (SMR) for thyroid cancer in the group that had any RAI (this means they could also have had ATDs and/or other treatments) was 3.94. If you look at the group that had _only_ RAI, the SMR for thyroid cancer was 4.91. Alternatively, the SMR for thyroid cancer in the group that had surgery (total or sub-total) was understandably 1.07. And the group that used only ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid cancer). So, you can see that looking at all the stats, you might come to a different conclusion if you were deciding on a treatment. And yes, the SMR indexes for the group having _only _ RAI for things like kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12, esophagus 1.15, and colon was 1.15. They probably don't consider these numbers " statistically significant " , but when you look at them, you can see that the rates for these are higher than the rates for other cancers, which might make one think that there is some logic to the fact that other organs absorb the RAI and perhaps that is contributing to cancers in these areas. It makes you think anyway. I can see why a lot of docs might argue with the results. The mean age of participants at time of treatment was 40 - 50, patients were followed for about 20 years. So one could argue that perhaps the older patients accounted for the larger cancer rates, who knows? You can argue it any way you want, but it's interesting to see their data. They also break it down into number of years between treatment and cancer death. Also, for those of you on ATDs who may be worried about what the summary said about risk of cancer increased with ATD use, the text of the article has a little explanation about that which is important: " Because patients treated with antithyroid drugs had an especially high rate of cancers diagnosed before study entry, an SMR analysis excluding patients with cancers diagnosed prior to study entry was performed. In this analysis, only brain cancer deaths remained elevated; however, excluding patients with cancers prior to study entry will underestimate the SMR. " So, again, the summary doesn't really give an accurate picture that the full text does. For those that want to see the full text, you can get it online at the JAMA website (www.jama.ama-assn.org), but they want $9 to get the full text copy online. I just went to my local library and printed it off the magazine index for free. That's the scoop. Read it if you want and draw your own conclusions! RE: Frustrated >I checked out a summary of the article here: >http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html ><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > >The summary, though, shows an increased risk of cancer mortality after >treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid >cancer only, but they attributed that to the thyroid disease itself. Not >really what I wanted to hear. > >Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Holly - You really have to see the full text of this article to appreciate it. The summary doesn't really do it justice. The article breaks down the patients into groups depending on what treatment they had. They have cancer stats for the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is where you see some interesting statistics. For example, the summary says that RAI showed a slight increase in thyroid cancer, probably due to the nature of the disease itself. Well, if you look through the actual stats, you might come to a different conclusion. The standardized mortality rate (SMR) for thyroid cancer in the group that had any RAI (this means they could also have had ATDs and/or other treatments) was 3.94. If you look at the group that had _only_ RAI, the SMR for thyroid cancer was 4.91. Alternatively, the SMR for thyroid cancer in the group that had surgery (total or sub-total) was understandably 1.07. And the group that used only ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid cancer). So, you can see that looking at all the stats, you might come to a different conclusion if you were deciding on a treatment. And yes, the SMR indexes for the group having _only _ RAI for things like kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12, esophagus 1.15, and colon was 1.15. They probably don't consider these numbers " statistically significant " , but when you look at them, you can see that the rates for these are higher than the rates for other cancers, which might make one think that there is some logic to the fact that other organs absorb the RAI and perhaps that is contributing to cancers in these areas. It makes you think anyway. I can see why a lot of docs might argue with the results. The mean age of participants at time of treatment was 40 - 50, patients were followed for about 20 years. So one could argue that perhaps the older patients accounted for the larger cancer rates, who knows? You can argue it any way you want, but it's interesting to see their data. They also break it down into number of years between treatment and cancer death. Also, for those of you on ATDs who may be worried about what the summary said about risk of cancer increased with ATD use, the text of the article has a little explanation about that which is important: " Because patients treated with antithyroid drugs had an especially high rate of cancers diagnosed before study entry, an SMR analysis excluding patients with cancers diagnosed prior to study entry was performed. In this analysis, only brain cancer deaths remained elevated; however, excluding patients with cancers prior to study entry will underestimate the SMR. " So, again, the summary doesn't really give an accurate picture that the full text does. For those that want to see the full text, you can get it online at the JAMA website (www.jama.ama-assn.org), but they want $9 to get the full text copy online. I just went to my local library and printed it off the magazine index for free. That's the scoop. Read it if you want and draw your own conclusions! RE: Frustrated >I checked out a summary of the article here: >http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html ><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > >The summary, though, shows an increased risk of cancer mortality after >treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid >cancer only, but they attributed that to the thyroid disease itself. Not >really what I wanted to hear. > >Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Holly - You really have to see the full text of this article to appreciate it. The summary doesn't really do it justice. The article breaks down the patients into groups depending on what treatment they had. They have cancer stats for the group that had any RAI, _only_ RAI, _only_ drugs, and surgery. This is where you see some interesting statistics. For example, the summary says that RAI showed a slight increase in thyroid cancer, probably due to the nature of the disease itself. Well, if you look through the actual stats, you might come to a different conclusion. The standardized mortality rate (SMR) for thyroid cancer in the group that had any RAI (this means they could also have had ATDs and/or other treatments) was 3.94. If you look at the group that had _only_ RAI, the SMR for thyroid cancer was 4.91. Alternatively, the SMR for thyroid cancer in the group that had surgery (total or sub-total) was understandably 1.07. And the group that used only ATDs had a SMR for thyroid cancer of 0 (no deaths attributed to thyroid cancer). So, you can see that looking at all the stats, you might come to a different conclusion if you were deciding on a treatment. And yes, the SMR indexes for the group having _only _ RAI for things like kidney cancer was 1.43, brain cancer was 1.60, digestive tract, 1.12, esophagus 1.15, and colon was 1.15. They probably don't consider these numbers " statistically significant " , but when you look at them, you can see that the rates for these are higher than the rates for other cancers, which might make one think that there is some logic to the fact that other organs absorb the RAI and perhaps that is contributing to cancers in these areas. It makes you think anyway. I can see why a lot of docs might argue with the results. The mean age of participants at time of treatment was 40 - 50, patients were followed for about 20 years. So one could argue that perhaps the older patients accounted for the larger cancer rates, who knows? You can argue it any way you want, but it's interesting to see their data. They also break it down into number of years between treatment and cancer death. Also, for those of you on ATDs who may be worried about what the summary said about risk of cancer increased with ATD use, the text of the article has a little explanation about that which is important: " Because patients treated with antithyroid drugs had an especially high rate of cancers diagnosed before study entry, an SMR analysis excluding patients with cancers diagnosed prior to study entry was performed. In this analysis, only brain cancer deaths remained elevated; however, excluding patients with cancers prior to study entry will underestimate the SMR. " So, again, the summary doesn't really give an accurate picture that the full text does. For those that want to see the full text, you can get it online at the JAMA website (www.jama.ama-assn.org), but they want $9 to get the full text copy online. I just went to my local library and printed it off the magazine index for free. That's the scoop. Read it if you want and draw your own conclusions! RE: Frustrated >I checked out a summary of the article here: >http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html ><http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > >The summary, though, shows an increased risk of cancer mortality after >treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid >cancer only, but they attributed that to the thyroid disease itself. Not >really what I wanted to hear. > >Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I'm sure they summarize these things the way they want it to look! I'm on NEJM e-mailing list, and get summaries of new articles, but I haven't been able to make myself hand over the bucks to them to get the full article. I'm sure it would be better if I could read the whole thing and come to my own conclusions rather than having a doctor or researcher tell me what their conclusions are! I do feel somewhat better after your explanation of the study. RE: Frustrated >I checked out a summary of the article here: > http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> >< http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > > >The summary, though, shows an increased risk of cancer mortality after >treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid >cancer only, but they attributed that to the thyroid disease itself. Not >really what I wanted to hear. > >Holly > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 I'm sure they summarize these things the way they want it to look! I'm on NEJM e-mailing list, and get summaries of new articles, but I haven't been able to make myself hand over the bucks to them to get the full article. I'm sure it would be better if I could read the whole thing and come to my own conclusions rather than having a doctor or researcher tell me what their conclusions are! I do feel somewhat better after your explanation of the study. RE: Frustrated >I checked out a summary of the article here: > http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> >< http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html <http://jama.ama-assn.org/issues/v280n4/abs/joc6995.html> > > >The summary, though, shows an increased risk of cancer mortality after >treatment with ATDs, not RAI. The RAI showed a slight increase in thyroid >cancer only, but they attributed that to the thyroid disease itself. Not >really what I wanted to hear. > >Holly > > > > Quote Link to comment Share on other sites More sharing options...
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