Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Just curious here.... (and since others on the list may be, also)... When's the last time you had a blood test, and do you know what your blood levels were, particularly your TSH level? How long has it been since you have been taking the Synthroid? What kind of a dose are you on? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 my dear thyroid cancer friends and family, i have not been that well to write , when came home from the hospital had a 1000 emails , read them all and trying to keep up. i am getting radiations on daily bases to my spines mets mid back and lower back, i am really sick nautious etc but it will be over soon. my question is this,,did anyone ever had mets to clavical ? that is my reoccurance ,,how to treat this please anyone? write me please , my double vision is so worse this is a huge effort for me , i have not lied to say i am scared , please write me i need you all my friends my familyi miss you all love oxoxox Jolie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 , I'm sorry to hear that you are still feeling so bad. It is important for you to understand your TSH level. With thyca you need a suppressed TSH of <0.10. You made no mention of the dose you are on or if any increases have been made. Synthroid will only work correctly if you are dosed correctly. Being weepy is one of the symptoms attached to hypothyroidism. So is weight gain, inability to sleep peacefully and hair loss. The first thing you can do is call the endo's office and ask your TSH number being sure to note the correct location of the decimal. A tsh of 20. is quite different from a tsh of .20 After you have that information we will all be able to help you better. However, my guess is that you are not suppressed adequately with your synthroid. 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 was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 I was on .1 mg and had my tsh was 1.66 my doc said it was to low so he lowered my dose to .o75 mg i had more blood drawn on dec 2 and when i called ofr the results the doc said they levels were fine i am not sure what it was but i will find out when i go to the oncologist on monday cause i am going to ask her what there were. > Just curious here.... (and since others on the list may be, also)... > When's the last time you had a blood test, and do you know what your blood > levels were, particularly your TSH level? > > How long has it been since you have been taking the Synthroid? What kind of a > dose are you on? > > - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Just as I suspected. Your doctor does not have a clue as to what to do with a thyroid cancer patient. You need to find another endo. Probably have completion surgery and possible scan....depending on the size of your original nodule. Do you know the nodule size? Do you have a copy of your pathology report? If not you need to get it. An oncologist is generally not the appropriate care giver for thyroid cancer. They have little experience with the disease. You need to find an endocrinologist to follow you who understands the appropriate protocols. 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 was on .1 mg and had my tsh was 1.66 my doc said it was to > low so he lowered my dose to .o75 mg i had more blood drawn > on dec 2 and when i called ofr the results the doc said they > levels were fine i am not sure what it was but i will find out > when i go to the oncologist on monday cause i am going to ask her > what there were. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Just as I suspected. Your doctor does not have a clue as to what to do with a thyroid cancer patient. You need to find another endo. Probably have completion surgery and possible scan....depending on the size of your original nodule. Do you know the nodule size? Do you have a copy of your pathology report? If not you need to get it. An oncologist is generally not the appropriate care giver for thyroid cancer. They have little experience with the disease. You need to find an endocrinologist to follow you who understands the appropriate protocols. 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 was on .1 mg and had my tsh was 1.66 my doc said it was to > low so he lowered my dose to .o75 mg i had more blood drawn > on dec 2 and when i called ofr the results the doc said they > levels were fine i am not sure what it was but i will find out > when i go to the oncologist on monday cause i am going to ask her > what there were. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > > I was on .1 mg and had my tsh was 1.66 my doc said it was to > > low so he lowered my dose to .o75 mg i had more blood drawn > > on dec 2 and when i called ofr the results the doc said they > > levels were fine i am not sure what it was but i will find out > > when i go to the oncologist on monday cause i am going to ask her > > what there were. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > > I was on .1 mg and had my tsh was 1.66 my doc said it was to > > low so he lowered my dose to .o75 mg i had more blood drawn > > on dec 2 and when i called ofr the results the doc said they > > levels were fine i am not sure what it was but i will find out > > when i go to the oncologist on monday cause i am going to ask her > > what there were. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > > I was on .1 mg and had my tsh was 1.66 my doc said it was to > > low so he lowered my dose to .o75 mg i had more blood drawn > > on dec 2 and when i called ofr the results the doc said they > > levels were fine i am not sure what it was but i will find out > > when i go to the oncologist on monday cause i am going to ask her > > what there were. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 , You are going to need to do your research and discuss everything with the doctor. Your present care seems inappropriate. To begin with you need to have your medication increased above .1 and then start serious discussions about further treatment with the doctor that you chose. Ask as many questions as come to mind here, read everything you can find in the files under archives. Gail > > > I was on .1 mg and had my tsh was 1.66 my doc said it was > to > > > low so he lowered my dose to .o75 mg i had more blood > drawn > > > on dec 2 and when i called ofr the results the doc said > they > > > levels were fine i am not sure what it was but i will find out > > > when i go to the oncologist on monday cause i am going to ask > her > > > what there were. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Re: Need Advise I had a nodule on the left lobe and during surgery they did a frozen section and it came back as not cancer when the did the biopsy of the rest of the lobe thats when they found the cancer, my docs supposed to be the best in the area. I am just disgusted with this whole thing. All i can ask is why me ? There are technical limitations to the histologic interpretation of microscopic frozen sections, which is the primary reason that permanent sections (requires fixation of tissue over many hours prior to slide preparation) arecut and interpreted from the surgical specimen(s) before a final report is issued. Your situation,whilenot the nurm, is not unprecedented. Further, the protion ofthe specimen submitted for frozen section analysis may have had optimum technical preparation,but simply may not have contained tumor. good news is that the surgical excision specimen was sectioned in a manner that allowed the disgnosis to be made. thank you very much Fury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Re: Need Advise The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > An oncologist is generally not the appropriate care giver for thyroid > cancer. They have little experience with the disease. You need to find > an endocrinologist to follow you who understands the appropriate > protocols. Professor Ain, whose posts you can find here,has a mechanism in place for consultation regarding thyroid cancer. You might considercallinghis office at the University of Kentucky and exploring that option,if it is appealing to you. No doubt, there are other experts,with whom you couldconsult, affording you an expert opinion(s) regarding your problem, while allowing yourlocal physicians,who might be caring for you on an ongoing basis to benefit from such input. Thank you very much Fury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Re: Need Advise The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > An oncologist is generally not the appropriate care giver for thyroid > cancer. They have little experience with the disease. You need to find > an endocrinologist to follow you who understands the appropriate > protocols. Professor Ain, whose posts you can find here,has a mechanism in place for consultation regarding thyroid cancer. You might considercallinghis office at the University of Kentucky and exploring that option,if it is appealing to you. No doubt, there are other experts,with whom you couldconsult, affording you an expert opinion(s) regarding your problem, while allowing yourlocal physicians,who might be caring for you on an ongoing basis to benefit from such input. Thank you very much Fury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Re: Need Advise The original nodule was 9-17 mm . The are only 2 endo's in the area i live in a very small town and the one i have is the only one that take my insurance. > An oncologist is generally not the appropriate care giver for thyroid > cancer. They have little experience with the disease. You need to find > an endocrinologist to follow you who understands the appropriate > protocols. Professor Ain, whose posts you can find here,has a mechanism in place for consultation regarding thyroid cancer. You might considercallinghis office at the University of Kentucky and exploring that option,if it is appealing to you. No doubt, there are other experts,with whom you couldconsult, affording you an expert opinion(s) regarding your problem, while allowing yourlocal physicians,who might be caring for you on an ongoing basis to benefit from such input. Thank you very much Fury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Oh, Jolie, I wish I had advice and suggestions but all I have is prayers and hugs. also, if the double vision gets too bad I am wondering if you could use a screen reader program like I use because I can't read the screen. let me know if I can help in any way. Hugs all around!!! Li and June Re: Need Advise > my dear thyroid cancer friends and family, i have not been that well to > write , when came home from the hospital had a 1000 emails , read them all > and trying to keep up. i am getting radiations on daily bases to my spines > mets mid back and lower back, i am really sick nautious etc but it will be > over soon. my question is this,,did anyone ever had mets to clavical ? that > is my reoccurance ,,how to treat this please anyone? write me please , my > double vision is so worse this is a huge effort for me , i have not lied to > say i am scared , please write me i need you all my friends my familyi miss > you all > love oxoxox > Jolie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Oh, Jolie, I wish I had advice and suggestions but all I have is prayers and hugs. also, if the double vision gets too bad I am wondering if you could use a screen reader program like I use because I can't read the screen. let me know if I can help in any way. Hugs all around!!! Li and June Re: Need Advise > my dear thyroid cancer friends and family, i have not been that well to > write , when came home from the hospital had a 1000 emails , read them all > and trying to keep up. i am getting radiations on daily bases to my spines > mets mid back and lower back, i am really sick nautious etc but it will be > over soon. my question is this,,did anyone ever had mets to clavical ? that > is my reoccurance ,,how to treat this please anyone? write me please , my > double vision is so worse this is a huge effort for me , i have not lied to > say i am scared , please write me i need you all my friends my familyi miss > you all > love oxoxox > Jolie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Oh, Jolie, I wish I had advice and suggestions but all I have is prayers and hugs. also, if the double vision gets too bad I am wondering if you could use a screen reader program like I use because I can't read the screen. let me know if I can help in any way. Hugs all around!!! Li and June Re: Need Advise > my dear thyroid cancer friends and family, i have not been that well to > write , when came home from the hospital had a 1000 emails , read them all > and trying to keep up. i am getting radiations on daily bases to my spines > mets mid back and lower back, i am really sick nautious etc but it will be > over soon. my question is this,,did anyone ever had mets to clavical ? that > is my reoccurance ,,how to treat this please anyone? write me please , my > double vision is so worse this is a huge effort for me , i have not lied to > say i am scared , please write me i need you all my friends my familyi miss > you all > love oxoxox > Jolie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 It sounds like (a) your doctor doesn't know enough about thyca ( your doctor doesn't seem to care about how you feel, either (whether it's personality or overwork, I don't know) © your problems are NOT normal (d) you could be undermedicated; have you had a TSH test lately? with what result? Have you had a completion thyroidectomy? any other treatment or followup after the lobectomy? Do you have to see a local endo? Can you get a referral (would your insurance cover it) to one somewhere else? Other than the initial flurry of activity, most of us only see the endo once or twice a year. Blood testing can be done locally and the results sent. Some consulting can be done by phone (e.g. confirming blood test results and dose adjustments). Some people will travel far to see a good thyca doctor. Some of the followup can also be done by a careing and knowledgeable (or at least willing to learn) internist, which you may able to find more easily in your area, especially if you have a real expert for the local doc to communicate with. You might want to gather some " authoritative " info about thyca from, say, the Amer Assoc of Endos, Clinical endo assn, etc. to cite. (they might not listen to information provided by us " mere patients " and our organization!) Then discuss with your insurance provider about the inadequacy of your care -- and do they really want you to get worse (and more expensive?) because of it??? Need Advise > I was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 It sounds like (a) your doctor doesn't know enough about thyca ( your doctor doesn't seem to care about how you feel, either (whether it's personality or overwork, I don't know) © your problems are NOT normal (d) you could be undermedicated; have you had a TSH test lately? with what result? Have you had a completion thyroidectomy? any other treatment or followup after the lobectomy? Do you have to see a local endo? Can you get a referral (would your insurance cover it) to one somewhere else? Other than the initial flurry of activity, most of us only see the endo once or twice a year. Blood testing can be done locally and the results sent. Some consulting can be done by phone (e.g. confirming blood test results and dose adjustments). Some people will travel far to see a good thyca doctor. Some of the followup can also be done by a careing and knowledgeable (or at least willing to learn) internist, which you may able to find more easily in your area, especially if you have a real expert for the local doc to communicate with. You might want to gather some " authoritative " info about thyca from, say, the Amer Assoc of Endos, Clinical endo assn, etc. to cite. (they might not listen to information provided by us " mere patients " and our organization!) Then discuss with your insurance provider about the inadequacy of your care -- and do they really want you to get worse (and more expensive?) because of it??? Need Advise > I was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 It sounds like (a) your doctor doesn't know enough about thyca ( your doctor doesn't seem to care about how you feel, either (whether it's personality or overwork, I don't know) © your problems are NOT normal (d) you could be undermedicated; have you had a TSH test lately? with what result? Have you had a completion thyroidectomy? any other treatment or followup after the lobectomy? Do you have to see a local endo? Can you get a referral (would your insurance cover it) to one somewhere else? Other than the initial flurry of activity, most of us only see the endo once or twice a year. Blood testing can be done locally and the results sent. Some consulting can be done by phone (e.g. confirming blood test results and dose adjustments). Some people will travel far to see a good thyca doctor. Some of the followup can also be done by a careing and knowledgeable (or at least willing to learn) internist, which you may able to find more easily in your area, especially if you have a real expert for the local doc to communicate with. You might want to gather some " authoritative " info about thyca from, say, the Amer Assoc of Endos, Clinical endo assn, etc. to cite. (they might not listen to information provided by us " mere patients " and our organization!) Then discuss with your insurance provider about the inadequacy of your care -- and do they really want you to get worse (and more expensive?) because of it??? Need Advise > I was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 I took synthroid for 4 weeks before one of my body scans (1999) and hated the side effects. My endo has me on Levoxyl. I do very well on it. No jitters, etc. bj wrote:It sounds like (a) your doctor doesn't know enough about thyca ( your doctor doesn't seem to care about how you feel, either (whether it's personality or overwork, I don't know) © your problems are NOT normal (d) you could be undermedicated; have you had a TSH test lately? with what result? Have you had a completion thyroidectomy? any other treatment or followup after the lobectomy? Do you have to see a local endo? Can you get a referral (would your insurance cover it) to one somewhere else? Other than the initial flurry of activity, most of us only see the endo once or twice a year. Blood testing can be done locally and the results sent. Some consulting can be done by phone (e.g. confirming blood test results and dose adjustments). Some people will travel far to see a good thyca doctor. Some of the followup can also be done by a careing and knowledgeable (or at least willing to learn) internist, which you may able to find more easily in your area, especially if you have a real expert for the local doc to communicate with. You might want to gather some " authoritative " info about thyca from, say, the Amer Assoc of Endos, Clinical endo assn, etc. to cite. (they might not listen to information provided by us " mere patients " and our organization!) Then discuss with your insurance provider about the inadequacy of your care -- and do they really want you to get worse (and more expensive?) because of it??? Need Advise > I was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 I took synthroid for 4 weeks before one of my body scans (1999) and hated the side effects. My endo has me on Levoxyl. I do very well on it. No jitters, etc. bj wrote:It sounds like (a) your doctor doesn't know enough about thyca ( your doctor doesn't seem to care about how you feel, either (whether it's personality or overwork, I don't know) © your problems are NOT normal (d) you could be undermedicated; have you had a TSH test lately? with what result? Have you had a completion thyroidectomy? any other treatment or followup after the lobectomy? Do you have to see a local endo? Can you get a referral (would your insurance cover it) to one somewhere else? Other than the initial flurry of activity, most of us only see the endo once or twice a year. Blood testing can be done locally and the results sent. Some consulting can be done by phone (e.g. confirming blood test results and dose adjustments). Some people will travel far to see a good thyca doctor. Some of the followup can also be done by a careing and knowledgeable (or at least willing to learn) internist, which you may able to find more easily in your area, especially if you have a real expert for the local doc to communicate with. You might want to gather some " authoritative " info about thyca from, say, the Amer Assoc of Endos, Clinical endo assn, etc. to cite. (they might not listen to information provided by us " mere patients " and our organization!) Then discuss with your insurance provider about the inadequacy of your care -- and do they really want you to get worse (and more expensive?) because of it??? Need Advise > I was diagnosed with pap thyroid cancer on sept 23 2002 after > haveing a left lobectomy. I have been on the synthroid and i > am still feeling tired. it this normal? I have told my doctor > about it. I have also gained 17lbs since then. I feel like i am > bloated all over. at timed i have some pitting edema in my legs. > I don't think that it is normal. It is very depressing. I have > told my doc i am not happy with the weight gain and i would > like my weight to be what it ws before surgery. but still > nothing is being done. I just want to cry all the time. I am > also having trouble sleeping i wake up several times a night it > is just to much at times. What is going on? Also my hair and > skin are so dry and my hair is falling out. I hope someone > out there has some advise on what i can do..or whats going on ... > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.