Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Hi , there are a number of articles describing how antibody titers are used to predict remission. It's true that some thyroid antibodies such as TPO and thyroglobulin antibodies aren't helpful, but TSI levels are a good indicator of remission. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Hi , My endo balked incredibly the first time I asked him for antibody testing. He just about flipped his lid, told me the tests were expensive, unreliable and meaningless. I have to admit I told him that I thought the TSH test was unreliable and meaningless, and he got that EVERY time so it was also expensive in the long run, and he finally agreed to order the antibody testing. He still maintains that it's not that reliable, but his position has mellowed considerably over time--much of the mellowing in every way with him, I date to after I gave him Elaine's book for Christmas 2 years ago. Or maybe he's just used to me after 9 years... Terry > > Reply-To: graves_support > Date: Mon, 15 Sep 2003 16:06:01 -0400 > To: graves_support > Subject: Is it just me?? > > > > Hi, > I have called many endos in my area (Manhattan), and none of them (except > one who is not covered by my insurance) hold any credence in the antibody > testing! Why is this?? Is it just economics? How logical is it that someone > can have antibodies but be considered in remission? I asked the last doc I > spoke with about whether she determines remission by absence of antibodies, > and she said " we look at the patient and all the symptoms, and don't go by > antibodies--they always have antibodies. " My current endo said something to > the effect of antibodies can decrease and then increase, so it is > unpredictable and therefore the antibody testing isn't helpful. :-( > > Maybe my expectations are too high, and I will never find a doc on my > insurance plan who sees antibody testing as relevant. > > > > > ------------------------------------- > 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 do 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 September 15, 2003 Report Share Posted September 15, 2003 Hi - Yep. It's frustrating, isn't it. With all the doctors I've been to, I've found it actually easier to " bully " them into antibody testing if they weren't specialists. I got a bunch of antibody tests done upon initial diagnosis (since they couldn't figure out what it was at first). My GP did anti-thyroglobulin and that was it. The endo I went to did TSI and TPO. Then I couldn't get another antibody test after that. I finally did bully the original GP into doing another TSI test after all my thyroid levels suddendly came back down to normal when I wasn't on any meds. He was completely clueless as to how this could be. At this point I knew more about thyroid disease than he did (_not_ an exaggeration) and convinced him to do the TSI which came back considerably lower than before and well below normal range. I admit, I used him shamelessly and then moved on to someone who had a clue! Since then, however, I haven't been able to get another antibody test from the so-called " experts " . That's OK, if my thyroid levels go up again, I plan to not consider any of their treatment options until they show me my AB levels are back up! I do have to agree with the one endo who told you that AB levels can increase and decrease. However, if they're planning to stop meds, you'd think it would make sense to _check_ the AB levels before doing so. Apparently that just makes too much sense, though. I am considered in " spontaneous remission " , and at that point my TSI were 73% (<125% normal). So I still had some and this was 2 years ago almost. Love to know what they are now, but it doesn't look like I'll ever find out either. I'm convinced changes in AB's are what causes some of my TSH changes. But get a doctor who'll even test that theory? Yeah right. They must subscribe to the same script yours have! Good luck anyway - maybe there's one out there. Is it just me?? > > > Hi, > I have called many endos in my area (Manhattan), and none of them (except > one who is not covered by my insurance) hold any credence in the antibody > testing! Why is this?? Is it just economics? How logical is it that someone > can have antibodies but be considered in remission? I asked the last doc I > spoke with about whether she determines remission by absence of antibodies, > and she said " we look at the patient and all the symptoms, and don't go by > antibodies--they always have antibodies. " My current endo said something to > the effect of antibodies can decrease and then increase, so it is > unpredictable and therefore the antibody testing isn't helpful. :-( > > Maybe my expectations are too high, and I will never find a doc on my > insurance plan who sees antibody testing as relevant. > > > > > ------------------------------------- > 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 do 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 September 16, 2003 Report Share Posted September 16, 2003 Terry, Elaine, & , Thanks so much for answering my post. I think I mainly needed a reality check, as I was starting to feel unsteady, given all the opposition in the medical community (at least those I've encountered) regarding the value of antibody testing. I guess I should consider myself lucky that so far, my GP has allowed me to get it done (at the three-month mark), and will probably not hassle me about it before going off meds down the road. At 06:19 PM 9/15/2003, you wrote: >Hi - > >Yep. It's frustrating, isn't it. With all the doctors I've been to, I've >found it actually easier to " bully " them into antibody testing if they >weren't specialists. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi, I am a healthy 35 y/o woman with a 2 1/2 and 4 y/o. I will be six weeks post on friday, I had upper/lower/chin moved 4 mm. I am still miserable! My sinus area is so swollen that my upper lip is turned in and I feel like the people on " the grinch " . I had an open bite, so my upper jaw was moved into the sinus area. I am fully wired, and cannot talk at all! I have been taking decongestants for my sinuses, but the problem there was, the mucus has to be coughed up which is extremely hard to do, and I can't get it out by mouth so I have had an upset stomach for days. In addition, this liquid diet is just crazy. I am down 15 pounds, which is a lot for me, and I think it is such a chore getting anything down. Why does it seem that it is not that bad for most of you? Could it be the wires? My face is killing me! and I have so many holiday and family functions coming up I am dreading it! Anyone else out there that is still swollen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi, I am a healthy 35 y/o woman with a 2 1/2 and 4 y/o. I will be six weeks post on friday, I had upper/lower/chin moved 4 mm. I am still miserable! My sinus area is so swollen that my upper lip is turned in and I feel like the people on " the grinch " . I had an open bite, so my upper jaw was moved into the sinus area. I am fully wired, and cannot talk at all! I have been taking decongestants for my sinuses, but the problem there was, the mucus has to be coughed up which is extremely hard to do, and I can't get it out by mouth so I have had an upset stomach for days. In addition, this liquid diet is just crazy. I am down 15 pounds, which is a lot for me, and I think it is such a chore getting anything down. Why does it seem that it is not that bad for most of you? Could it be the wires? My face is killing me! and I have so many holiday and family functions coming up I am dreading it! Anyone else out there that is still swollen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hey, Don't feel bad I only had upper and genio and I am the same age you are and the girls I work with say I look like a " Who " (from the grinch). I still have swelling in my nose, cheeks and upper lip and I am 4 weeks post op. I am not wired since I only had upper, but 2 day ago when I went to the OS he has now banded me with 3 bands, but I am still able to talk, people just need to listen a little closer to understand me. I also have the mucus that I am coughing up, and gaging at time because it is so bad. I know it's going to get better, so hang in there and it will all be a distant memory soon. > > Hi, I am a healthy 35 y/o woman with a 2 1/2 and 4 y/o. I will be > six weeks post on friday, I had upper/lower/chin moved 4 mm. I am > still miserable! My sinus area is so swollen that my upper lip is > turned in and I feel like the people on " the grinch " . I had an open > bite, so my upper jaw was moved into the sinus area. I am fully > wired, and cannot talk at all! I have been taking decongestants for > my sinuses, but the problem there was, the mucus has to be coughed > up which is extremely hard to do, and I can't get it out by mouth > so I have had an upset stomach for days. In addition, this liquid > diet is just crazy. I am down 15 pounds, which is a lot for me, and > I think it is such a chore getting anything down. > > Why does it seem that it is not that bad for most of you? Could it > be the wires? My face is killing me! and I have so many holiday and > family functions coming up I am dreading it! > > Anyone else out there that is still swollen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hey, Don't feel bad I only had upper and genio and I am the same age you are and the girls I work with say I look like a " Who " (from the grinch). I still have swelling in my nose, cheeks and upper lip and I am 4 weeks post op. I am not wired since I only had upper, but 2 day ago when I went to the OS he has now banded me with 3 bands, but I am still able to talk, people just need to listen a little closer to understand me. I also have the mucus that I am coughing up, and gaging at time because it is so bad. I know it's going to get better, so hang in there and it will all be a distant memory soon. > > Hi, I am a healthy 35 y/o woman with a 2 1/2 and 4 y/o. I will be > six weeks post on friday, I had upper/lower/chin moved 4 mm. I am > still miserable! My sinus area is so swollen that my upper lip is > turned in and I feel like the people on " the grinch " . I had an open > bite, so my upper jaw was moved into the sinus area. I am fully > wired, and cannot talk at all! I have been taking decongestants for > my sinuses, but the problem there was, the mucus has to be coughed > up which is extremely hard to do, and I can't get it out by mouth > so I have had an upset stomach for days. In addition, this liquid > diet is just crazy. I am down 15 pounds, which is a lot for me, and > I think it is such a chore getting anything down. > > Why does it seem that it is not that bad for most of you? Could it > be the wires? My face is killing me! and I have so many holiday and > family functions coming up I am dreading it! > > Anyone else out there that is still swollen? Quote Link to comment Share on other sites More sharing options...
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