Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Joan, Generally speaking 0.027 is an unnecessary suppression, it's very hyper. Are you sure he didn't say 0.27? The fact that your TSH was 1.7 after only 5 weeks on meds was excellent. In another month it may have been at 0.10 on your 150mcg. Your doctor appears to be pushing the envelope to get you to suppression faster. If you start having palpatiations or get really tired (it can be a hyper symptom) make sure you call him and ask for another TSH. Once in suppression we become super sensitive to dose changes. A tiny dose change can make you feel great or darn right miserable. Here is a TSH scale: 1.00 down>>0.75 >>0.50..0.25.. 0.15 and you goal is 0.10...0.05 Keep us posted. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > I just met with my endo to review my first blood test results since > RAI. Blood work was 5 weeks after starting back on meds (150mcg > Synthroid) and my TSH was 1.7. He has upped my dosage to 175 mcg and > says he is shooting for my TSH to be 0.027 (which sounds a lot lower > then <0.1 that I keep seeing in messages. But I am not a doctor nor > a mathematician.... > > So, I would love to hear your opinions about his recommendations for > the TSH level. > > This guy has been a real pain to deal with but today I think we may > have finaly found a way to work together - he gave and I gave and we > both felt good when the session ended. I am still not sure that I > fully trust him but I think he will now let me help determine my > treatments (yes!). So if a TSH of 0.027 is too low then I want to > know to discuss it with him. > > Thanks > Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Joan, Generally speaking 0.027 is an unnecessary suppression, it's very hyper. Are you sure he didn't say 0.27? The fact that your TSH was 1.7 after only 5 weeks on meds was excellent. In another month it may have been at 0.10 on your 150mcg. Your doctor appears to be pushing the envelope to get you to suppression faster. If you start having palpatiations or get really tired (it can be a hyper symptom) make sure you call him and ask for another TSH. Once in suppression we become super sensitive to dose changes. A tiny dose change can make you feel great or darn right miserable. Here is a TSH scale: 1.00 down>>0.75 >>0.50..0.25.. 0.15 and you goal is 0.10...0.05 Keep us posted. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > I just met with my endo to review my first blood test results since > RAI. Blood work was 5 weeks after starting back on meds (150mcg > Synthroid) and my TSH was 1.7. He has upped my dosage to 175 mcg and > says he is shooting for my TSH to be 0.027 (which sounds a lot lower > then <0.1 that I keep seeing in messages. But I am not a doctor nor > a mathematician.... > > So, I would love to hear your opinions about his recommendations for > the TSH level. > > This guy has been a real pain to deal with but today I think we may > have finaly found a way to work together - he gave and I gave and we > both felt good when the session ended. I am still not sure that I > fully trust him but I think he will now let me help determine my > treatments (yes!). So if a TSH of 0.027 is too low then I want to > know to discuss it with him. > > Thanks > Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2002 Report Share Posted November 14, 2002 Christy, The well known YMMV applies here. .02 is fine for some people. The differenece between .02 and .01 is of no importance IF YOU FEEL OKAY. Do you feel okay? Generally speaking doctors prefer to keep their patients at a higher number. You are on a very high dose to achieve suppression...do you know if you will hold suppression at a lower dose? I do not know why the doctor wants you at a non-detectable 0.00, did you ask him why? On this list 0.10 has always been the guideline and goal. As for losing weight to fit the dose, I was told that actually the dose is based on lean body mass. In my case there is NO lean body mass that I am aware of ( but my doctor assured me it's lurking underneath the excess baggage. If weight was the basis for medication I would be on an astronomical dose. Losing weight is always a better way to go but I don't know how it effects the dosage. Maybe someone else here can give you better input on that. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > > Gail - > My TSH was recently measured at .01 and my doctor said we're shooting for non-detectable! If .02 is two low, isn't .01?? And why would he want to go lower? He didn't increase my dosage (I'm currently on .325 right now) but suggested I lose 10 pounds to better " fit " my dosage. Your thoughts? Thanks.. > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2002 Report Share Posted November 14, 2002 Christy, The well known YMMV applies here. .02 is fine for some people. The differenece between .02 and .01 is of no importance IF YOU FEEL OKAY. Do you feel okay? Generally speaking doctors prefer to keep their patients at a higher number. You are on a very high dose to achieve suppression...do you know if you will hold suppression at a lower dose? I do not know why the doctor wants you at a non-detectable 0.00, did you ask him why? On this list 0.10 has always been the guideline and goal. As for losing weight to fit the dose, I was told that actually the dose is based on lean body mass. In my case there is NO lean body mass that I am aware of ( but my doctor assured me it's lurking underneath the excess baggage. If weight was the basis for medication I would be on an astronomical dose. Losing weight is always a better way to go but I don't know how it effects the dosage. Maybe someone else here can give you better input on that. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > > Gail - > My TSH was recently measured at .01 and my doctor said we're shooting for non-detectable! If .02 is two low, isn't .01?? And why would he want to go lower? He didn't increase my dosage (I'm currently on .325 right now) but suggested I lose 10 pounds to better " fit " my dosage. Your thoughts? Thanks.. > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Christy, If you have had doubts about your endo's knowledge then obviously you need to seek another opinion. Yes, you should ALWAYS question a doctor if there is something you want to clarify. You might also ask him how many thyca patients he has treated and IS treating right now. This will give you some idea of his level of experience. It is important to use a doctor experienced in the management of thyca with a significant case load. ly, it sounds like the doctor just has the suppression number turned around in his head. If you need to be an *uncooperative patient* in order to get the appropriate treatment then so be it. Your life and your health are more important than appeasing a doctor. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 -- In Thyca@y..., Christy <thycamail@y...> wrote: > > Hi Gail, > I feel fine although I do have occasional bouts of high blood pressure on standing, but I had those long before I was diagnosed with Thyca. I have to admit, though, after reading the threads on this subject, I'm more confused than ever. My endo said the recommended supression levels for thyca are <.01, or undetectable, but this certainly sounds low based on your comments. > Unfortunately, I've had " questions " about my endo's depth of thyca knowledge and have even more, now. I know he's good in diabetes because he treated my daughter for years, but he seems somewhat out-of-touch with thyca. He was going to do my first scan with thyrogen until I objected. He " consulted " with another doctor who agreed it was important to do a withdrawl scan. There have been several other issues I've disagreed with him on, mainly, his reluctance to ablate based on an almost undetectable Tg level but a scan showing " minimal uptake " . > Question: Should I question him on my levels, too? I don't want to be an " uncooperative patient " but everything I read here is contradictory to what he says. > As always, thank you and everyone for their valuable input! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Christy, If you have had doubts about your endo's knowledge then obviously you need to seek another opinion. Yes, you should ALWAYS question a doctor if there is something you want to clarify. You might also ask him how many thyca patients he has treated and IS treating right now. This will give you some idea of his level of experience. It is important to use a doctor experienced in the management of thyca with a significant case load. ly, it sounds like the doctor just has the suppression number turned around in his head. If you need to be an *uncooperative patient* in order to get the appropriate treatment then so be it. Your life and your health are more important than appeasing a doctor. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 -- In Thyca@y..., Christy <thycamail@y...> wrote: > > Hi Gail, > I feel fine although I do have occasional bouts of high blood pressure on standing, but I had those long before I was diagnosed with Thyca. I have to admit, though, after reading the threads on this subject, I'm more confused than ever. My endo said the recommended supression levels for thyca are <.01, or undetectable, but this certainly sounds low based on your comments. > Unfortunately, I've had " questions " about my endo's depth of thyca knowledge and have even more, now. I know he's good in diabetes because he treated my daughter for years, but he seems somewhat out-of-touch with thyca. He was going to do my first scan with thyrogen until I objected. He " consulted " with another doctor who agreed it was important to do a withdrawl scan. There have been several other issues I've disagreed with him on, mainly, his reluctance to ablate based on an almost undetectable Tg level but a scan showing " minimal uptake " . > Question: Should I question him on my levels, too? I don't want to be an " uncooperative patient " but everything I read here is contradictory to what he says. > As always, thank you and everyone for their valuable input! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Christy, If you have had doubts about your endo's knowledge then obviously you need to seek another opinion. Yes, you should ALWAYS question a doctor if there is something you want to clarify. You might also ask him how many thyca patients he has treated and IS treating right now. This will give you some idea of his level of experience. It is important to use a doctor experienced in the management of thyca with a significant case load. ly, it sounds like the doctor just has the suppression number turned around in his head. If you need to be an *uncooperative patient* in order to get the appropriate treatment then so be it. Your life and your health are more important than appeasing a doctor. Gail dx: 1968, TT, pap. & foll. well differentiated w/hurthle cell, RAI, rad.neck dissection,lung surgery, hashimoto, tg antibody 575, iodine resistant,existing thyca nodules in lungs. Last surgery 1972 -- In Thyca@y..., Christy <thycamail@y...> wrote: > > Hi Gail, > I feel fine although I do have occasional bouts of high blood pressure on standing, but I had those long before I was diagnosed with Thyca. I have to admit, though, after reading the threads on this subject, I'm more confused than ever. My endo said the recommended supression levels for thyca are <.01, or undetectable, but this certainly sounds low based on your comments. > Unfortunately, I've had " questions " about my endo's depth of thyca knowledge and have even more, now. I know he's good in diabetes because he treated my daughter for years, but he seems somewhat out-of-touch with thyca. He was going to do my first scan with thyrogen until I objected. He " consulted " with another doctor who agreed it was important to do a withdrawl scan. There have been several other issues I've disagreed with him on, mainly, his reluctance to ablate based on an almost undetectable Tg level but a scan showing " minimal uptake " . > Question: Should I question him on my levels, too? I don't want to be an " uncooperative patient " but everything I read here is contradictory to what he says. > As always, thank you and everyone for their valuable input! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 > > My endo said the recommended supression levels for thyca are <.01, > or undetectable, but this certainly sounds low based on your > comments. > > Question: Should I question him on my levels, too? I don't want to > be an " uncooperative patient " but everything I read here is > contradictory to what he says. The TSH goal is < 0.1, not < 0.01 - it's the TG that should be undetectable. I would DEFINITELY question the endo about this. Assertiveness training 101 - You can question him without confronting him (the difference between " My understanding is that my TSH should be <0.1. I'm curious as to why you why you want it to be <0.01 instead " and " You idiot, don't you know that my TSH should be <0.1, not <0.01 ?!?! " ) Asking questions does not make you an uncooperative patient, it makes you an informed one. A good doctor will have no problem having you politely ask questions. > He didn't increase my dosage (I'm currently on .325 right now) but > suggested I lose 10 pounds to better " fit " my dosage. I don't know about you, but I find this comment to be insensitive and insulting. My opinion only. Cheers, Alisa Currently off Levoxyl and on Cytomel for scan 12/16/02 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets Age: 48 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 > > My endo said the recommended supression levels for thyca are <.01, > or undetectable, but this certainly sounds low based on your > comments. > > Question: Should I question him on my levels, too? I don't want to > be an " uncooperative patient " but everything I read here is > contradictory to what he says. The TSH goal is < 0.1, not < 0.01 - it's the TG that should be undetectable. I would DEFINITELY question the endo about this. Assertiveness training 101 - You can question him without confronting him (the difference between " My understanding is that my TSH should be <0.1. I'm curious as to why you why you want it to be <0.01 instead " and " You idiot, don't you know that my TSH should be <0.1, not <0.01 ?!?! " ) Asking questions does not make you an uncooperative patient, it makes you an informed one. A good doctor will have no problem having you politely ask questions. > He didn't increase my dosage (I'm currently on .325 right now) but > suggested I lose 10 pounds to better " fit " my dosage. I don't know about you, but I find this comment to be insensitive and insulting. My opinion only. Cheers, Alisa Currently off Levoxyl and on Cytomel for scan 12/16/02 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets Age: 48 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 > > My endo said the recommended supression levels for thyca are <.01, > or undetectable, but this certainly sounds low based on your > comments. > > Question: Should I question him on my levels, too? I don't want to > be an " uncooperative patient " but everything I read here is > contradictory to what he says. The TSH goal is < 0.1, not < 0.01 - it's the TG that should be undetectable. I would DEFINITELY question the endo about this. Assertiveness training 101 - You can question him without confronting him (the difference between " My understanding is that my TSH should be <0.1. I'm curious as to why you why you want it to be <0.01 instead " and " You idiot, don't you know that my TSH should be <0.1, not <0.01 ?!?! " ) Asking questions does not make you an uncooperative patient, it makes you an informed one. A good doctor will have no problem having you politely ask questions. > He didn't increase my dosage (I'm currently on .325 right now) but > suggested I lose 10 pounds to better " fit " my dosage. I don't know about you, but I find this comment to be insensitive and insulting. My opinion only. Cheers, Alisa Currently off Levoxyl and on Cytomel for scan 12/16/02 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: TBS and 100 mCi RAI 6/6/2002: TBS - No sign of mets Age: 48 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 Quote Link to comment Share on other sites More sharing options...
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