Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Sue, Don't ever apologize for asking questions...I think, in the beginning I was asking the same questions over and over again because I just couldn't get my mind to work and remember <sigh> The TSI are Thryoid Stimulating Immunoglobulins and these are autoantibodies and are what attack our thyroids and our eyes. It is a test I would recommend to EVERYONE diagnosed with graves from the beginning. It does not need to be taken at every blood draw, but from time to time to see if these are wanning with treatment and and indicator of remission. Some doctors just don't see the need for these to be drawn, but from my own experience of not having them drawn in the beginning nor for over 5 years until my eye doctor did them to make sure my eye disease was caused by graves and they were elevated. Had they been done in the beginning and periodically since then, maybe I would/could have done things differently in treatment and avoided any eye involvement. My doctor didn't think they were important before, she does now. Hope this helps, 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 March 20, 2002 Report Share Posted March 20, 2002 Hi Sue, Don't ever apologize for asking questions...I think, in the beginning I was asking the same questions over and over again because I just couldn't get my mind to work and remember <sigh> The TSI are Thryoid Stimulating Immunoglobulins and these are autoantibodies and are what attack our thyroids and our eyes. It is a test I would recommend to EVERYONE diagnosed with graves from the beginning. It does not need to be taken at every blood draw, but from time to time to see if these are wanning with treatment and and indicator of remission. Some doctors just don't see the need for these to be drawn, but from my own experience of not having them drawn in the beginning nor for over 5 years until my eye doctor did them to make sure my eye disease was caused by graves and they were elevated. Had they been done in the beginning and periodically since then, maybe I would/could have done things differently in treatment and avoided any eye involvement. My doctor didn't think they were important before, she does now. Hope this helps, 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 March 20, 2002 Report Share Posted March 20, 2002 Wow so much to learn. I will ask my local doc about the test and see if I have been tested. He is the one who got eye problems after RAI. When we went skiing with him a couple of years back, he had to tape his eyes closed at night. So I don't think he will have a problem with me worrying about this. Sue At 11:09 AM 20/03/2002 -0500, you wrote: > Hi Sue, > Don't ever apologize for asking questions...I think, in the be >ginng I was > asking the same questions over and over again because I just >couldn't get my ><> > > The TSI are Thryoid Stimulating Immunoglobulins >and these are autoantibodies > It is a test I would > It does not > >need to be taken at every blood draw, but from time to time to see if these > > are wanning with treatment and and indicator of remission. > > Some >doctors just don't see the need for these to be drawn, but from my own > >experience of not having them drawn in the beginning nor for over 5 years > > until my eye doctor did them to make sure my eye disease was caused by > Had they been done in the beginning and > periodically since then, maybe I would/could have done things differently in > treatment and avoided any eye involvement. My doctor didn't think they were > important before, she does now. > > Hope this helps, > Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Wow so much to learn. I will ask my local doc about the test and see if I have been tested. He is the one who got eye problems after RAI. When we went skiing with him a couple of years back, he had to tape his eyes closed at night. So I don't think he will have a problem with me worrying about this. Sue At 11:09 AM 20/03/2002 -0500, you wrote: > Hi Sue, > Don't ever apologize for asking questions...I think, in the be >ginng I was > asking the same questions over and over again because I just >couldn't get my ><> > > The TSI are Thryoid Stimulating Immunoglobulins >and these are autoantibodies > It is a test I would > It does not > >need to be taken at every blood draw, but from time to time to see if these > > are wanning with treatment and and indicator of remission. > > Some >doctors just don't see the need for these to be drawn, but from my own > >experience of not having them drawn in the beginning nor for over 5 years > > until my eye doctor did them to make sure my eye disease was caused by > Had they been done in the beginning and > periodically since then, maybe I would/could have done things differently in > treatment and avoided any eye involvement. My doctor didn't think they were > important before, she does now. > > Hope this helps, > Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Wow so much to learn. I will ask my local doc about the test and see if I have been tested. He is the one who got eye problems after RAI. When we went skiing with him a couple of years back, he had to tape his eyes closed at night. So I don't think he will have a problem with me worrying about this. Sue At 11:09 AM 20/03/2002 -0500, you wrote: > Hi Sue, > Don't ever apologize for asking questions...I think, in the be >ginng I was > asking the same questions over and over again because I just >couldn't get my ><> > > The TSI are Thryoid Stimulating Immunoglobulins >and these are autoantibodies > It is a test I would > It does not > >need to be taken at every blood draw, but from time to time to see if these > > are wanning with treatment and and indicator of remission. > > Some >doctors just don't see the need for these to be drawn, but from my own > >experience of not having them drawn in the beginning nor for over 5 years > > until my eye doctor did them to make sure my eye disease was caused by > Had they been done in the beginning and > periodically since then, maybe I would/could have done things differently in > treatment and avoided any eye involvement. My doctor didn't think they were > important before, she does now. > > Hope this helps, > Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Terry- Nope, you're not missing anything. I had exophthalmus before I had RAI. After RAI, it became severe and they had to closely watch me. I saw an ophthalmologist every week for 2 months and then once/month 4 months after that. After 6 months it seemed to stabilize. The only reason that I didn't end up having pressure surgery was because I have huge orbits so my eyes could pop out as much as they needed. My abs were probably high at that time. Now, 15 years later, the abs are low. But the exophthalmus is still there although now it's considered mild. My eyes have receded to 27mm. The inflammation reaction from the abs leaves permanent scar tissue in the muscles in your eyes so the eyes still protrude. I recently switched from Armour to Cytomel and Synthroid and had that sharp and aching feeling in my sockets like I did when my TED was active. It seems to have stopped. My ab levels were measured last summer before the switch. It'd have been interesting to see if there were any changes in ab levels while my eyes were hurting. Take care, > , > > I'm not good at looking back through the posts, but I thought you recently > mentioned eye involvement? If it's caused by the ab's and yours are low, am > I missing something? > > Thanks, > > Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Terry- Nope, you're not missing anything. I had exophthalmus before I had RAI. After RAI, it became severe and they had to closely watch me. I saw an ophthalmologist every week for 2 months and then once/month 4 months after that. After 6 months it seemed to stabilize. The only reason that I didn't end up having pressure surgery was because I have huge orbits so my eyes could pop out as much as they needed. My abs were probably high at that time. Now, 15 years later, the abs are low. But the exophthalmus is still there although now it's considered mild. My eyes have receded to 27mm. The inflammation reaction from the abs leaves permanent scar tissue in the muscles in your eyes so the eyes still protrude. I recently switched from Armour to Cytomel and Synthroid and had that sharp and aching feeling in my sockets like I did when my TED was active. It seems to have stopped. My ab levels were measured last summer before the switch. It'd have been interesting to see if there were any changes in ab levels while my eyes were hurting. Take care, > , > > I'm not good at looking back through the posts, but I thought you recently > mentioned eye involvement? If it's caused by the ab's and yours are low, am > I missing something? > > Thanks, > > Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi Terry- Nope, you're not missing anything. I had exophthalmus before I had RAI. After RAI, it became severe and they had to closely watch me. I saw an ophthalmologist every week for 2 months and then once/month 4 months after that. After 6 months it seemed to stabilize. The only reason that I didn't end up having pressure surgery was because I have huge orbits so my eyes could pop out as much as they needed. My abs were probably high at that time. Now, 15 years later, the abs are low. But the exophthalmus is still there although now it's considered mild. My eyes have receded to 27mm. The inflammation reaction from the abs leaves permanent scar tissue in the muscles in your eyes so the eyes still protrude. I recently switched from Armour to Cytomel and Synthroid and had that sharp and aching feeling in my sockets like I did when my TED was active. It seems to have stopped. My ab levels were measured last summer before the switch. It'd have been interesting to see if there were any changes in ab levels while my eyes were hurting. Take care, > , > > I'm not good at looking back through the posts, but I thought you recently > mentioned eye involvement? If it's caused by the ab's and yours are low, am > I missing something? > > Thanks, > > Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Hi , Thanks for the explanation. There are so many " mysteries " to this disease! Terry > > Reply-To: graves_support > Date: Wed, 20 Mar 2002 14:12:34 -0800 > To: <graves_support > > Subject: Re: Had my labs done.... > > Hi Terry- > > Nope, you're not missing anything. I had exophthalmus before I had RAI. > After RAI, it became severe and they had to closely watch me. I saw an > ophthalmologist every week for 2 months and then once/month 4 months after > that. After 6 months it seemed to stabilize. The only reason that I didn't > end up having pressure surgery was because I have huge orbits so my eyes > could pop out as much as they needed. My abs were probably high at that > time. > > Now, 15 years later, the abs are low. But the exophthalmus is still there > although now it's considered mild. My eyes have receded to 27mm. The > inflammation reaction from the abs leaves permanent scar tissue in the > muscles in your eyes so the eyes still protrude. > > I recently switched from Armour to Cytomel and Synthroid and had that sharp > and aching feeling in my sockets like I did when my TED was active. It > seems to have stopped. > > My ab levels were measured last summer before the switch. It'd have been > interesting to see if there were any changes in ab levels while my eyes were > hurting. > > Take care, > > > >> , >> >> I'm not good at looking back through the posts, but I thought you recently >> mentioned eye involvement? If it's caused by the ab's and yours are low, > am >> I missing something? >> >> Thanks, >> >> Terry > > > > > ------------------------------------- > 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 March 20, 2002 Report Share Posted March 20, 2002 Hi , Thanks for the explanation. There are so many " mysteries " to this disease! Terry > > Reply-To: graves_support > Date: Wed, 20 Mar 2002 14:12:34 -0800 > To: <graves_support > > Subject: Re: Had my labs done.... > > Hi Terry- > > Nope, you're not missing anything. I had exophthalmus before I had RAI. > After RAI, it became severe and they had to closely watch me. I saw an > ophthalmologist every week for 2 months and then once/month 4 months after > that. After 6 months it seemed to stabilize. The only reason that I didn't > end up having pressure surgery was because I have huge orbits so my eyes > could pop out as much as they needed. My abs were probably high at that > time. > > Now, 15 years later, the abs are low. But the exophthalmus is still there > although now it's considered mild. My eyes have receded to 27mm. The > inflammation reaction from the abs leaves permanent scar tissue in the > muscles in your eyes so the eyes still protrude. > > I recently switched from Armour to Cytomel and Synthroid and had that sharp > and aching feeling in my sockets like I did when my TED was active. It > seems to have stopped. > > My ab levels were measured last summer before the switch. It'd have been > interesting to see if there were any changes in ab levels while my eyes were > hurting. > > Take care, > > > >> , >> >> I'm not good at looking back through the posts, but I thought you recently >> mentioned eye involvement? If it's caused by the ab's and yours are low, > am >> I missing something? >> >> Thanks, >> >> Terry > > > > > ------------------------------------- > 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 March 20, 2002 Report Share Posted March 20, 2002 Hi , Thanks for the explanation. There are so many " mysteries " to this disease! Terry > > Reply-To: graves_support > Date: Wed, 20 Mar 2002 14:12:34 -0800 > To: <graves_support > > Subject: Re: Had my labs done.... > > Hi Terry- > > Nope, you're not missing anything. I had exophthalmus before I had RAI. > After RAI, it became severe and they had to closely watch me. I saw an > ophthalmologist every week for 2 months and then once/month 4 months after > that. After 6 months it seemed to stabilize. The only reason that I didn't > end up having pressure surgery was because I have huge orbits so my eyes > could pop out as much as they needed. My abs were probably high at that > time. > > Now, 15 years later, the abs are low. But the exophthalmus is still there > although now it's considered mild. My eyes have receded to 27mm. The > inflammation reaction from the abs leaves permanent scar tissue in the > muscles in your eyes so the eyes still protrude. > > I recently switched from Armour to Cytomel and Synthroid and had that sharp > and aching feeling in my sockets like I did when my TED was active. It > seems to have stopped. > > My ab levels were measured last summer before the switch. It'd have been > interesting to see if there were any changes in ab levels while my eyes were > hurting. > > Take care, > > > >> , >> >> I'm not good at looking back through the posts, but I thought you recently >> mentioned eye involvement? If it's caused by the ab's and yours are low, > am >> I missing something? >> >> Thanks, >> >> Terry > > > > > ------------------------------------- > 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 March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Regarding the notes on how you feel on the days you have labs done and clipping them to the labs when you get your copies back, you will be able to watch how the numbers go and chart them, and when you see you were feeling good on a certain day, and you check your lab values that day, it will give you a target to shoot for if your values go back up or go down to hypo. This is something many of us recommend doing from the beginning. It also lets you see that *something* is happening while your on the meds and know that you really are doing something about it, even on days when you feel like nothing is going right about it. It is not something you *have* to do, but it sure comes in handy. Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Regarding the notes on how you feel on the days you have labs done and clipping them to the labs when you get your copies back, you will be able to watch how the numbers go and chart them, and when you see you were feeling good on a certain day, and you check your lab values that day, it will give you a target to shoot for if your values go back up or go down to hypo. This is something many of us recommend doing from the beginning. It also lets you see that *something* is happening while your on the meds and know that you really are doing something about it, even on days when you feel like nothing is going right about it. It is not something you *have* to do, but it sure comes in handy. Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Regarding the notes on how you feel on the days you have labs done and clipping them to the labs when you get your copies back, you will be able to watch how the numbers go and chart them, and when you see you were feeling good on a certain day, and you check your lab values that day, it will give you a target to shoot for if your values go back up or go down to hypo. This is something many of us recommend doing from the beginning. It also lets you see that *something* is happening while your on the meds and know that you really are doing something about it, even on days when you feel like nothing is going right about it. It is not something you *have* to do, but it sure comes in handy. Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Ask the doctor for a copy of your labs as he gets them. Much better record keeping that way! Out of curiosity...what time and day is it where you are right now? It is 3:46 p.m. on Thursday here. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Ask the doctor for a copy of your labs as he gets them. Much better record keeping that way! Out of curiosity...what time and day is it where you are right now? It is 3:46 p.m. on Thursday here. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Sue, Ask the doctor for a copy of your labs as he gets them. Much better record keeping that way! Out of curiosity...what time and day is it where you are right now? It is 3:46 p.m. on Thursday here. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Jody. We don't actually get given our results on paper just verbal. Once they sent out you a copy and the doc, however now they don't. I will just write it down each time and keep a diary. Thank you for all the help Sue Mollymook, Australia At 02:56 PM 21/03/2002 -0500, you wrote: > Hi Sue, > Regarding the notes on how you feel on the days you have labs >donend > clipping them to the labs when you get your copies back, you will >be able to > watch how the numbers go and chart them, and when you see you >were feeling > good on a certain day, and you check your lab values that >day, it will give > > This is something many of us recommend doing from >the beginning. > > It also lets you see that *something* is happening >while your on the meds > and know that you really are doing something >about it, even on days when you > It is not something you *have* > to >do, but it sure comes in handy. > > Jody >--------------------------------------------------------------------------- ------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Jody. We don't actually get given our results on paper just verbal. Once they sent out you a copy and the doc, however now they don't. I will just write it down each time and keep a diary. Thank you for all the help Sue Mollymook, Australia At 02:56 PM 21/03/2002 -0500, you wrote: > Hi Sue, > Regarding the notes on how you feel on the days you have labs >donend > clipping them to the labs when you get your copies back, you will >be able to > watch how the numbers go and chart them, and when you see you >were feeling > good on a certain day, and you check your lab values that >day, it will give > > This is something many of us recommend doing from >the beginning. > > It also lets you see that *something* is happening >while your on the meds > and know that you really are doing something >about it, even on days when you > It is not something you *have* > to >do, but it sure comes in handy. > > Jody >--------------------------------------------------------------------------- ------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Jody. We don't actually get given our results on paper just verbal. Once they sent out you a copy and the doc, however now they don't. I will just write it down each time and keep a diary. Thank you for all the help Sue Mollymook, Australia At 02:56 PM 21/03/2002 -0500, you wrote: > Hi Sue, > Regarding the notes on how you feel on the days you have labs >donend > clipping them to the labs when you get your copies back, you will >be able to > watch how the numbers go and chart them, and when you see you >were feeling > good on a certain day, and you check your lab values that >day, it will give > > This is something many of us recommend doing from >the beginning. > > It also lets you see that *something* is happening >while your on the meds > and know that you really are doing something >about it, even on days when you > It is not something you *have* > to >do, but it sure comes in handy. > > Jody >--------------------------------------------------------------------------- ------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Hi Jody I don't know what time it is, as I have been away all day and only got home and found this email. However this morning it dawned on me that we were on the computer at the same time. It was about 7.30am to 8.00am Friday morning when I was doing mail. They say we are about 16 hours ahead of you guys. Sue At 03:45 PM 21/03/2002 -0500, you wrote: > Hi Sue, > Much better record > keeping that way! > > It is > 3:46 p >.m. Thursday here. > Jody > > > > >_________________________________________________________________ > Chat >with friends online, try MSN Messenger: http://messenger.msn.com > > > > Quote Link to comment Share on other sites More sharing options...
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