Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey Deb, Thanks. I didn't know that you could do that. Figured you had to have a script from a doctor somewhere. On second thought maybe I'll try to con my FP into it. He will do anything. And he tries so hard and is a real sweetie. I've already gotten an appointment with somebody else. He was just to conservative and (read cheap) cost effective for the insurance company. So I'm hoping that the new one doesn't think craziness is the same as trying to lose the sick role. It occurred to me that none of us on this list seem comfortable in the " sick role " which is what some anthropologists call people who fill a function in their society by being ill. Interesting that we seem to be such a strong lot, willing to take on a fight if it means getting over this stuff. Laurel Re: Endo visit Laurel, The antibodies test wouldn't serve any purpose for him, but it would serve you purpose, like being monitered for other autoimmune dieseases and GO, etc. If he refuses, pay for it yourself and turn in the bill to your insurance company with a letter explaining what your doctor said, with the lab results and past lab work so you can show that there was a need. Maybe they will reimburse you. If not you will have your diagnosis, and you can throw it at him. (nicely of course!) I hope this helps! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey Deb, Thanks. I didn't know that you could do that. Figured you had to have a script from a doctor somewhere. On second thought maybe I'll try to con my FP into it. He will do anything. And he tries so hard and is a real sweetie. I've already gotten an appointment with somebody else. He was just to conservative and (read cheap) cost effective for the insurance company. So I'm hoping that the new one doesn't think craziness is the same as trying to lose the sick role. It occurred to me that none of us on this list seem comfortable in the " sick role " which is what some anthropologists call people who fill a function in their society by being ill. Interesting that we seem to be such a strong lot, willing to take on a fight if it means getting over this stuff. Laurel Re: Endo visit Laurel, The antibodies test wouldn't serve any purpose for him, but it would serve you purpose, like being monitered for other autoimmune dieseases and GO, etc. If he refuses, pay for it yourself and turn in the bill to your insurance company with a letter explaining what your doctor said, with the lab results and past lab work so you can show that there was a need. Maybe they will reimburse you. If not you will have your diagnosis, and you can throw it at him. (nicely of course!) I hope this helps! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hi Elaine, I'll make a wager that the test Laurel's doctor wanted to do was off all hormone replacement and another uptake...we are from the same area almost, and when I first started with my endo up in Laurel's neck of the woods, I was told this was the only way. LOL...NOT, I am not about to subject my body to anymore radioactive iodine and I don't think I would be capable of making it to that test after being off replacements for 2/3 weeks prior to that! I will be getting the thyroglobulin in my next labs the end of May. Couldn't get them with this one. Am waiting for results now. 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Elaine, I'll make a wager that the test Laurel's doctor wanted to do was off all hormone replacement and another uptake...we are from the same area almost, and when I first started with my endo up in Laurel's neck of the woods, I was told this was the only way. LOL...NOT, I am not about to subject my body to anymore radioactive iodine and I don't think I would be capable of making it to that test after being off replacements for 2/3 weeks prior to that! I will be getting the thyroglobulin in my next labs the end of May. Couldn't get them with this one. Am waiting for results now. 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Elaine, I'll make a wager that the test Laurel's doctor wanted to do was off all hormone replacement and another uptake...we are from the same area almost, and when I first started with my endo up in Laurel's neck of the woods, I was told this was the only way. LOL...NOT, I am not about to subject my body to anymore radioactive iodine and I don't think I would be capable of making it to that test after being off replacements for 2/3 weeks prior to that! I will be getting the thyroglobulin in my next labs the end of May. Couldn't get them with this one. Am waiting for results now. 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 April 16, 2002 Report Share Posted April 16, 2002 Hey Marigold, I did an archive search and it didn't come back with your message. Probably my fault. If you could just send me a sketch of it I would appreciate it. My email address is: Geneva248@... Actually my history is a comedy of errors, only its not very funny. I have been fighting this medical monster since 1999 when I stupidly let an endocrinologist radiate me not once but twice. Didn't do my homework. So now I've done the entire gamut of complications. Please feel free to email me. I'd be happy to help in any way I can, although there are those on this list with far more knowledge than I have. I'm still learning from them. Laurel Re: Endo visit --- geneva248 wrote: > Hey Group, > > Had an appointment today with my third endo. > Thought you'd > appreciate some of the highpoints. First he told me > that its > impossible to test for remaining active thyroid > tissue because it > wold involve a period of time off synthroid and, of > course it would > precipitate hypo symptoms and " you wouldn't want > that. " Then he told > me that he wouldn't test for antibody levels because > " that's not > done. " " Its only done by those crazies " by which I > can only deduce > he means the likes of us. When asked what the last > bloodwork levels > were (you might remember the ones I had to fight to > have drawn and > then was told they were " a little high " ) he would > only respond " a > little high. " So I asked him for copies of > everything, all of the > labs to which he agreed but would need a day or two > to have them > copied. > > The only bright spot here is that, although he > thinks what happened > to me was " very rare " (hah, sure)he claims he is now > warning his RAI > patients that complications such as GO and the rest > can happen with a > diagnosis of multinodular goiter. I mentioned to > him that perhaps I > had Graves/Hashimoto's all along and he couldn't > dispute that. Still > only crazies test the antibodies. Wonder how one > gets a clear > diagnosis? Well he says its not necessary because > it doesn't really > change anything. > > His answer to the multiple problems that have > occured since the RAI > is that I'm growing old. Right. 54 is not a kid > but until I had RAI > I was working out for an hour three times a week, > juggling work and > home, and doing reasonably well thanks-very-much. > Does he hold out > any hope for the future? Well........I could try a > major medical > facility like Cleveland Clinic but, according to > him, most people are > not satisfied with the results they acheive either. > > > I might add that during all this the poor man seemed > quite anxious. > I'm not sure what that was all about but perhaps I'm > getting a > reputation for being " one of the crazies. " If so > then thanks to all > of you for providing credentials in this very > exclusive club. > > In other words I'd rather be nuts with you guys than > hopeless with > the sane folks. Because if I believe this guy, I'm > stuck with wierd > eyes and a funky heartbeat and fatigue and pain for > the rest of my > miserable life. With you guys there is > encouragment, empowerment and > hope. > Thanks for being there. > Laurel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey Marigold, I did an archive search and it didn't come back with your message. Probably my fault. If you could just send me a sketch of it I would appreciate it. My email address is: Geneva248@... Actually my history is a comedy of errors, only its not very funny. I have been fighting this medical monster since 1999 when I stupidly let an endocrinologist radiate me not once but twice. Didn't do my homework. So now I've done the entire gamut of complications. Please feel free to email me. I'd be happy to help in any way I can, although there are those on this list with far more knowledge than I have. I'm still learning from them. Laurel Re: Endo visit --- geneva248 wrote: > Hey Group, > > Had an appointment today with my third endo. > Thought you'd > appreciate some of the highpoints. First he told me > that its > impossible to test for remaining active thyroid > tissue because it > wold involve a period of time off synthroid and, of > course it would > precipitate hypo symptoms and " you wouldn't want > that. " Then he told > me that he wouldn't test for antibody levels because > " that's not > done. " " Its only done by those crazies " by which I > can only deduce > he means the likes of us. When asked what the last > bloodwork levels > were (you might remember the ones I had to fight to > have drawn and > then was told they were " a little high " ) he would > only respond " a > little high. " So I asked him for copies of > everything, all of the > labs to which he agreed but would need a day or two > to have them > copied. > > The only bright spot here is that, although he > thinks what happened > to me was " very rare " (hah, sure)he claims he is now > warning his RAI > patients that complications such as GO and the rest > can happen with a > diagnosis of multinodular goiter. I mentioned to > him that perhaps I > had Graves/Hashimoto's all along and he couldn't > dispute that. Still > only crazies test the antibodies. Wonder how one > gets a clear > diagnosis? Well he says its not necessary because > it doesn't really > change anything. > > His answer to the multiple problems that have > occured since the RAI > is that I'm growing old. Right. 54 is not a kid > but until I had RAI > I was working out for an hour three times a week, > juggling work and > home, and doing reasonably well thanks-very-much. > Does he hold out > any hope for the future? Well........I could try a > major medical > facility like Cleveland Clinic but, according to > him, most people are > not satisfied with the results they acheive either. > > > I might add that during all this the poor man seemed > quite anxious. > I'm not sure what that was all about but perhaps I'm > getting a > reputation for being " one of the crazies. " If so > then thanks to all > of you for providing credentials in this very > exclusive club. > > In other words I'd rather be nuts with you guys than > hopeless with > the sane folks. Because if I believe this guy, I'm > stuck with wierd > eyes and a funky heartbeat and fatigue and pain for > the rest of my > miserable life. With you guys there is > encouragment, empowerment and > hope. > Thanks for being there. > Laurel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey Marigold, I did an archive search and it didn't come back with your message. Probably my fault. If you could just send me a sketch of it I would appreciate it. My email address is: Geneva248@... Actually my history is a comedy of errors, only its not very funny. I have been fighting this medical monster since 1999 when I stupidly let an endocrinologist radiate me not once but twice. Didn't do my homework. So now I've done the entire gamut of complications. Please feel free to email me. I'd be happy to help in any way I can, although there are those on this list with far more knowledge than I have. I'm still learning from them. Laurel Re: Endo visit --- geneva248 wrote: > Hey Group, > > Had an appointment today with my third endo. > Thought you'd > appreciate some of the highpoints. First he told me > that its > impossible to test for remaining active thyroid > tissue because it > wold involve a period of time off synthroid and, of > course it would > precipitate hypo symptoms and " you wouldn't want > that. " Then he told > me that he wouldn't test for antibody levels because > " that's not > done. " " Its only done by those crazies " by which I > can only deduce > he means the likes of us. When asked what the last > bloodwork levels > were (you might remember the ones I had to fight to > have drawn and > then was told they were " a little high " ) he would > only respond " a > little high. " So I asked him for copies of > everything, all of the > labs to which he agreed but would need a day or two > to have them > copied. > > The only bright spot here is that, although he > thinks what happened > to me was " very rare " (hah, sure)he claims he is now > warning his RAI > patients that complications such as GO and the rest > can happen with a > diagnosis of multinodular goiter. I mentioned to > him that perhaps I > had Graves/Hashimoto's all along and he couldn't > dispute that. Still > only crazies test the antibodies. Wonder how one > gets a clear > diagnosis? Well he says its not necessary because > it doesn't really > change anything. > > His answer to the multiple problems that have > occured since the RAI > is that I'm growing old. Right. 54 is not a kid > but until I had RAI > I was working out for an hour three times a week, > juggling work and > home, and doing reasonably well thanks-very-much. > Does he hold out > any hope for the future? Well........I could try a > major medical > facility like Cleveland Clinic but, according to > him, most people are > not satisfied with the results they acheive either. > > > I might add that during all this the poor man seemed > quite anxious. > I'm not sure what that was all about but perhaps I'm > getting a > reputation for being " one of the crazies. " If so > then thanks to all > of you for providing credentials in this very > exclusive club. > > In other words I'd rather be nuts with you guys than > hopeless with > the sane folks. Because if I believe this guy, I'm > stuck with wierd > eyes and a funky heartbeat and fatigue and pain for > the rest of my > miserable life. With you guys there is > encouragment, empowerment and > hope. > Thanks for being there. > Laurel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Laurel, Yes, at our next class reunion maybe I can get the Looniest of All reward. Can you find a new doctor? Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hi Laurel, Yes, at our next class reunion maybe I can get the Looniest of All reward. Can you find a new doctor? Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Jody, Thanks for the information! I went to see my GP today. I talked her into one more TSI for Friday. After being off the methimazole, I want to see if the antibodies still drop again. I, the same as you felt better during the last few weeks, and the hyper comes and goes, its not all the time anymore. The blood work from April 5th showed my TSI dropped, my T4's dropped into normal and my T3's went higher. This test was done being off methimazole for 8 days, so we'll see what happens on Fridays test. I am really curious to see if the antibodies dropped because of the methimazole or on their own. From the past before everything went hay wire, I am banking that they are going down on their own. I am wondering if I had surgery, would this place me in a severe hypo situation, If it goes away on its own, a come and go thing. Would it make me severe hypo most of the time, If I was only hyper some of the time, not continual? Should I wait and see if I go euthryoid or have surgery to take only a little thyroid. My goal is to become permantly euthroid, with little or no medication, or an on and off medication. In your opinion, would you " wait and see " for a while before rushing into surgery if this were happening to you with your numbers? Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Laurel, Good-luck with your appointment!!! I hope everything goes well!!! I think we are a strong lot!!! It really helps when others who are going thru the same thing give advice or opinions. For some reason, people are intimidated by the medical community, and feel they don't have a say in their own treatment. It helps to know that others feel the same as you do, and to know that it is ok to fight if that is what it takes. After all the doctors are working FOR US!!! Sometimes it is hard to remember that, when we are sick and not feeling well. We just want them to fix us. I love when people refer to getting another doc as " I Fired my Doc " . That is exactly what it is!! Hang in there!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Laurel, Good-luck with your appointment!!! I hope everything goes well!!! I think we are a strong lot!!! It really helps when others who are going thru the same thing give advice or opinions. For some reason, people are intimidated by the medical community, and feel they don't have a say in their own treatment. It helps to know that others feel the same as you do, and to know that it is ok to fight if that is what it takes. After all the doctors are working FOR US!!! Sometimes it is hard to remember that, when we are sick and not feeling well. We just want them to fix us. I love when people refer to getting another doc as " I Fired my Doc " . That is exactly what it is!! Hang in there!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Laurel, Good-luck with your appointment!!! I hope everything goes well!!! I think we are a strong lot!!! It really helps when others who are going thru the same thing give advice or opinions. For some reason, people are intimidated by the medical community, and feel they don't have a say in their own treatment. It helps to know that others feel the same as you do, and to know that it is ok to fight if that is what it takes. After all the doctors are working FOR US!!! Sometimes it is hard to remember that, when we are sick and not feeling well. We just want them to fix us. I love when people refer to getting another doc as " I Fired my Doc " . That is exactly what it is!! Hang in there!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Hey Jody, The part that I didn't mention was that, after being denied all the tests that I asked for he ordered the usual stuff, told me to call in a few days to see if my Rx needed to be changed, wrote a script for the same dose of synthroid, and told me to be sure to get a reminder card for, (are you ready?) October. So now I'm thinking " great " I'm in perfect health as far as he is concerned. Never mind the eye problem and the heart rhythm problem and the bruising problem and the immune system problem. I'm just fine 'cause the HMO thinks I should be. I do love you guys. Laurel Re: Endo visit Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com ------------------------------------- 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 April 16, 2002 Report Share Posted April 16, 2002 Hey Jody, The part that I didn't mention was that, after being denied all the tests that I asked for he ordered the usual stuff, told me to call in a few days to see if my Rx needed to be changed, wrote a script for the same dose of synthroid, and told me to be sure to get a reminder card for, (are you ready?) October. So now I'm thinking " great " I'm in perfect health as far as he is concerned. Never mind the eye problem and the heart rhythm problem and the bruising problem and the immune system problem. I'm just fine 'cause the HMO thinks I should be. I do love you guys. Laurel Re: Endo visit Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com ------------------------------------- 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 April 16, 2002 Report Share Posted April 16, 2002 Hey Jody, The part that I didn't mention was that, after being denied all the tests that I asked for he ordered the usual stuff, told me to call in a few days to see if my Rx needed to be changed, wrote a script for the same dose of synthroid, and told me to be sure to get a reminder card for, (are you ready?) October. So now I'm thinking " great " I'm in perfect health as far as he is concerned. Never mind the eye problem and the heart rhythm problem and the bruising problem and the immune system problem. I'm just fine 'cause the HMO thinks I should be. I do love you guys. Laurel Re: Endo visit Hi Deb, Laurel and all, The antibodies will tell us if we still have active graves disease. From 3 different doctors I have talked to, including my current endo, once RAI has been done, they *assume* we no longer have active graves disease, (somewhere along the line here, treatment, active graves, and insurance companies/payments play a role here, I think has spoken about this before). My current endo, after telling me no on several visits to ab testing because it wasn't necessary after RAI, was very surprised when my TSI came back elevated. She now orders all of the thyroid antibody testing. The last blood work was the first time she had done this, every single one of my ab's that she tested for thyroid came back elevated, since going on ptu to lower my ab's to help with my eyes and the goal is to reduce my ab's it is going to be something we will be watching. All ab's will be tested this lab, then we will go for every 3 months on ab's and use FT3 and FT4 for monitoring in between. I can tell you this much, but have no idea why, when my ab's levels were dropping quickly, I felt GREAT...for 3 weeks I felt better than I have in years, then the TSI's started climbing again, my hormone replacement was off, and I have been struggling with hypo since then. To actually get to the point, if we have elevated ab's, *I* believe it also affects how we feel, how replacement hormones work, or maybe just the conversion of T4 to T3. Maybe I am wrong, but for me, it has been this way. So addressing the ab's and bringing them down, is essential, maybe *especially* after RAI, again in my opinion. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com ------------------------------------- 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Laruel, I will answer your private e-mail after hubby leaves for class about 6:30, but I think it is worth the call to that number. You are finding all the TOP ROTTEN Docs in our area I think! Things will get better Laurel, as soon as you connect with a doctor who will listen and work with you! Hang tough! 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Deb, >>>In your opinion, would you " wait and see " for a while before rushing into >>>surgery if this were happening to you with your numbers?<<< Oh Deb, I couldn't recommend anything to you. You have so much other stuff going on with the nodules. I am out of my league here. Surgery would probably make you hypo, but Shari on mediboard is still a bit hyper from a sub-total, so it is going to be very hard to say, depends on how much they leave. The dangers with a sub-total is that you can go hyper again, your TSI's may continue to rise, putting your eyes more at risk...this later about tsi's are my opinion. But for me, I would take my chances on a sub-total. I think before you make any decisions, you need to get the results of what those nodules are, you have several and they run hot and cold. Make your decision based on what you find out here. When will you find out...or did you and I missed the post??? 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 April 16, 2002 Report Share Posted April 16, 2002 Hi Deb, >>>In your opinion, would you " wait and see " for a while before rushing into >>>surgery if this were happening to you with your numbers?<<< Oh Deb, I couldn't recommend anything to you. You have so much other stuff going on with the nodules. I am out of my league here. Surgery would probably make you hypo, but Shari on mediboard is still a bit hyper from a sub-total, so it is going to be very hard to say, depends on how much they leave. The dangers with a sub-total is that you can go hyper again, your TSI's may continue to rise, putting your eyes more at risk...this later about tsi's are my opinion. But for me, I would take my chances on a sub-total. I think before you make any decisions, you need to get the results of what those nodules are, you have several and they run hot and cold. Make your decision based on what you find out here. When will you find out...or did you and I missed the post??? 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 April 16, 2002 Report Share Posted April 16, 2002 Hey Deb, >>>I love when people refer to getting another doc as " I Fired my Doc " <<< I just fired my last primary doc to her ear so to speak over the phone, talk about empowering!!! And I don't feel one bit guilty. Maybe the things I said to her will get through her ego and make a difference with how she treats future patients, but she isn't treating me anymore! BTW, I was nice...just straight and to the point about why I would not be coming back to her office again. 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 April 16, 2002 Report Share Posted April 16, 2002 Hey Deb, >>>I love when people refer to getting another doc as " I Fired my Doc " <<< I just fired my last primary doc to her ear so to speak over the phone, talk about empowering!!! And I don't feel one bit guilty. Maybe the things I said to her will get through her ego and make a difference with how she treats future patients, but she isn't treating me anymore! BTW, I was nice...just straight and to the point about why I would not be coming back to her office again. 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...
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