Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Here we go again....I was hoping I would not have to repeat what I went through last summer, but guess what, it's a repeat. I tried to tell my new Oncologist that my TSH soars quickly, but he said he would not schedule a scan until 6 weeks after going off Synthroid (Last summer my TSH reached at least 700). So, 3 weeks off of Synthroid (last Friday), I had my TSH checked, it was at 150. I called my doctor's office just knowing that they would go ahead and schedule a scan. WRONG! I was told that they would not schedule it until after being off of Synthroid 6 weeks!! I pleaded and begged, but to no avail. The nuclear med dr. even told me that this is protocol. He said if I could not handle it, go back on my Synthroid, and forget the scan. I haven't had a clean scan yet, so I do not feel comfortable with that. Anyone else ever feel this type of frustration? Sorry, I was just really needing to vent. Thanks for listening. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Terri, I have asked about this very subject many times. Obviously, some don't need 6 weeks to reach required TSH for scan/treatment....and why would any doctor put a patient through weeks! not days, of unnecessary hypo hell? Don't know. Maybe it has something to do with timing of the ordered nuclear material. Maybe it's too costly or time consuming to check TSH before 6 weeks if most aren't high enough by then..... I just don't know - maybe Ian or another nuclear/medical professional can offer some insight. I'm so sorry you have to suffer needlessly! Sandy TT/RAI Oct. 2000, multi-focal pap Need to Vent Here we go again....I was hoping I would not have to repeat what I went through last summer, but guess what, it's a repeat. I tried to tell my new Oncologist that my TSH soars quickly, but he said he would not schedule a scan until 6 weeks after going off Synthroid (Last summer my TSH reached at least 700). So, 3 weeks off of Synthroid (last Friday), I had my TSH checked, it was at 150. I called my doctor's office just knowing that they would go ahead and schedule a scan. WRONG! I was told that they would not schedule it until after being off of Synthroid 6 weeks!! I pleaded and begged, but to no avail. The nuclear med dr. even told me that this is protocol. He said if I could not handle it, go back on my Synthroid, and forget the scan. I haven't had a clean scan yet, so I do not feel comfortable with that. Anyone else ever feel this type of frustration? Sorry, I was just really needing to vent. Thanks for listening. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Terri, I have asked about this very subject many times. Obviously, some don't need 6 weeks to reach required TSH for scan/treatment....and why would any doctor put a patient through weeks! not days, of unnecessary hypo hell? Don't know. Maybe it has something to do with timing of the ordered nuclear material. Maybe it's too costly or time consuming to check TSH before 6 weeks if most aren't high enough by then..... I just don't know - maybe Ian or another nuclear/medical professional can offer some insight. I'm so sorry you have to suffer needlessly! Sandy TT/RAI Oct. 2000, multi-focal pap Need to Vent Here we go again....I was hoping I would not have to repeat what I went through last summer, but guess what, it's a repeat. I tried to tell my new Oncologist that my TSH soars quickly, but he said he would not schedule a scan until 6 weeks after going off Synthroid (Last summer my TSH reached at least 700). So, 3 weeks off of Synthroid (last Friday), I had my TSH checked, it was at 150. I called my doctor's office just knowing that they would go ahead and schedule a scan. WRONG! I was told that they would not schedule it until after being off of Synthroid 6 weeks!! I pleaded and begged, but to no avail. The nuclear med dr. even told me that this is protocol. He said if I could not handle it, go back on my Synthroid, and forget the scan. I haven't had a clean scan yet, so I do not feel comfortable with that. Anyone else ever feel this type of frustration? Sorry, I was just really needing to vent. Thanks for listening. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 Hi Terri, I can't believe that any doctor would let your TSH go to 700. It seems crazy to me. If I were you I would try and get some Cytomel prescribed and then 2 weeks before the scan come off of that and go hypo. I find it much easier this way for me and it means less time being hypo. My oncologist suggested I come off T4 for 4 weeks and then scan but I didn't even want that so went on T3 (Cytomel) for 4 weeks and then came off of that. I see no reason why a patient should suffer needlessly. Besides I was under the impression that most hospitals scanned a patient as long as their TSH was over 30. This rigid sticking to 6 weeks seems very unfair when your TSH is already 150 at only 3 weeks. Hope it works out. Take care and best of luck for a clean scan. (monica.gray@...) Wellingborough, England Age 29 Pap thyca encapsulated 2.5cm TT 03/21/00 RAI 50mci 06/15/00 T4 150mcg Clean Scan 04/02/01 Need to Vent Here we go again....I was hoping I would not have to repeat what I went through last summer, but guess what, it's a repeat. I tried to tell my new Oncologist that my TSH soars quickly, but he said he would not schedule a scan until 6 weeks after going off Synthroid (Last summer my TSH reached at least 700). So, 3 weeks off of Synthroid (last Friday), I had my TSH checked, it was at 150. I called my doctor's office just knowing that they would go ahead and schedule a scan. WRONG! I was told that they would not schedule it until after being off of Synthroid 6 weeks!! I pleaded and begged, but to no avail. The nuclear med dr. even told me that this is protocol. He said if I could not handle it, go back on my Synthroid, and forget the scan. I haven't had a clean scan yet, so I do not feel comfortable with that. Anyone else ever feel this type of frustration? Sorry, I was just really needing to vent. Thanks for listening. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 Hi Terri, I can't believe that any doctor would let your TSH go to 700. It seems crazy to me. If I were you I would try and get some Cytomel prescribed and then 2 weeks before the scan come off of that and go hypo. I find it much easier this way for me and it means less time being hypo. My oncologist suggested I come off T4 for 4 weeks and then scan but I didn't even want that so went on T3 (Cytomel) for 4 weeks and then came off of that. I see no reason why a patient should suffer needlessly. Besides I was under the impression that most hospitals scanned a patient as long as their TSH was over 30. This rigid sticking to 6 weeks seems very unfair when your TSH is already 150 at only 3 weeks. Hope it works out. Take care and best of luck for a clean scan. (monica.gray@...) Wellingborough, England Age 29 Pap thyca encapsulated 2.5cm TT 03/21/00 RAI 50mci 06/15/00 T4 150mcg Clean Scan 04/02/01 Need to Vent Here we go again....I was hoping I would not have to repeat what I went through last summer, but guess what, it's a repeat. I tried to tell my new Oncologist that my TSH soars quickly, but he said he would not schedule a scan until 6 weeks after going off Synthroid (Last summer my TSH reached at least 700). So, 3 weeks off of Synthroid (last Friday), I had my TSH checked, it was at 150. I called my doctor's office just knowing that they would go ahead and schedule a scan. WRONG! I was told that they would not schedule it until after being off of Synthroid 6 weeks!! I pleaded and begged, but to no avail. The nuclear med dr. even told me that this is protocol. He said if I could not handle it, go back on my Synthroid, and forget the scan. I haven't had a clean scan yet, so I do not feel comfortable with that. Anyone else ever feel this type of frustration? Sorry, I was just really needing to vent. Thanks for listening. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 I'm sorry to hear that you are being so mistreated by the very people who are supposed to be helping you. I would keep politely " fishing " for a better answer than " it's just protocol. " You deserve to have a professional treating you who actually knows the WHY behind the protocol. I mean any " monkey " can " follow protocol, " what you need is a person who can understand and EXPLAIN the rational behind it. I would just call him back and tell him that his answer is just not good enough for you and he will HAVE to explain it to you. Now, that being said: I can offer this as a " possible " reason behind it. I'm also going hypo--presently at 3 weeks and 2 days--for RAI ablation. I was told that the isolation room at the local hospital is " booked up " until Mon. July 23rd, which is when I am scheduled to check in assuming that on Friday July 20 my tsh is >30. My rad onc doc isn't even going to check it until then. BUT, it's possible that your hospital is like mine and just doesn't have the special isolation room available. I know if my tsh was >30 right now, I'd just have to keep waiting until July 23rd anyway. Here's another thought I had, but I have NO medical background, so I'm not sure about it whatsoever. I'm only mentioning it as a possible thing that you might want to ASK your rad onc doc about. Here goes: When I asked my endo yesterday about " how bad is bad going to get as far as being hypo is concerned " --she told me that it varies WIDELY and is totally dependent upon how sensitive a person is to the tsh. She said she had a patient who was working and doing fine with a tsh over 1,000 and she has had others who were feeling extremely bad with a tsh of 20. So....this has me wondering IF PERHAPS the exact tsh number isn't as important as the 6 week time period. I know it takes 6 weeks for the T4 to leave our bodies, so maybe that's the WHY behind the " protocol. " So, maybe you could use this information to talk to your doc again. Also, I want to echo what the others have said about being on Cytomel for the first 4 weeks of the 6 week hypo time. I have had more energy on Cytomel than I ever had on Synthroid, so actualy I've felt BETTER during hypo time, so far. I even took the kids to an amusement park for the day and we had the best time ever. Usually ( on Synthroid) I am way too exhausted to enjoy it, but this time I had no problem keeping up with the kids and in fact they were tired a long time before I was. So, if I were you, I would definitely ask my doc for a prescription of Cytome until those last 2 hypo weeks. --Chris tt 4/01; papillary w/ follicular var; RAI ablation for 7/23/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 I'm sorry to hear that you are being so mistreated by the very people who are supposed to be helping you. I would keep politely " fishing " for a better answer than " it's just protocol. " You deserve to have a professional treating you who actually knows the WHY behind the protocol. I mean any " monkey " can " follow protocol, " what you need is a person who can understand and EXPLAIN the rational behind it. I would just call him back and tell him that his answer is just not good enough for you and he will HAVE to explain it to you. Now, that being said: I can offer this as a " possible " reason behind it. I'm also going hypo--presently at 3 weeks and 2 days--for RAI ablation. I was told that the isolation room at the local hospital is " booked up " until Mon. July 23rd, which is when I am scheduled to check in assuming that on Friday July 20 my tsh is >30. My rad onc doc isn't even going to check it until then. BUT, it's possible that your hospital is like mine and just doesn't have the special isolation room available. I know if my tsh was >30 right now, I'd just have to keep waiting until July 23rd anyway. Here's another thought I had, but I have NO medical background, so I'm not sure about it whatsoever. I'm only mentioning it as a possible thing that you might want to ASK your rad onc doc about. Here goes: When I asked my endo yesterday about " how bad is bad going to get as far as being hypo is concerned " --she told me that it varies WIDELY and is totally dependent upon how sensitive a person is to the tsh. She said she had a patient who was working and doing fine with a tsh over 1,000 and she has had others who were feeling extremely bad with a tsh of 20. So....this has me wondering IF PERHAPS the exact tsh number isn't as important as the 6 week time period. I know it takes 6 weeks for the T4 to leave our bodies, so maybe that's the WHY behind the " protocol. " So, maybe you could use this information to talk to your doc again. Also, I want to echo what the others have said about being on Cytomel for the first 4 weeks of the 6 week hypo time. I have had more energy on Cytomel than I ever had on Synthroid, so actualy I've felt BETTER during hypo time, so far. I even took the kids to an amusement park for the day and we had the best time ever. Usually ( on Synthroid) I am way too exhausted to enjoy it, but this time I had no problem keeping up with the kids and in fact they were tired a long time before I was. So, if I were you, I would definitely ask my doc for a prescription of Cytome until those last 2 hypo weeks. --Chris tt 4/01; papillary w/ follicular var; RAI ablation for 7/23/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 I'm sorry to hear that you are being so mistreated by the very people who are supposed to be helping you. I would keep politely " fishing " for a better answer than " it's just protocol. " You deserve to have a professional treating you who actually knows the WHY behind the protocol. I mean any " monkey " can " follow protocol, " what you need is a person who can understand and EXPLAIN the rational behind it. I would just call him back and tell him that his answer is just not good enough for you and he will HAVE to explain it to you. Now, that being said: I can offer this as a " possible " reason behind it. I'm also going hypo--presently at 3 weeks and 2 days--for RAI ablation. I was told that the isolation room at the local hospital is " booked up " until Mon. July 23rd, which is when I am scheduled to check in assuming that on Friday July 20 my tsh is >30. My rad onc doc isn't even going to check it until then. BUT, it's possible that your hospital is like mine and just doesn't have the special isolation room available. I know if my tsh was >30 right now, I'd just have to keep waiting until July 23rd anyway. Here's another thought I had, but I have NO medical background, so I'm not sure about it whatsoever. I'm only mentioning it as a possible thing that you might want to ASK your rad onc doc about. Here goes: When I asked my endo yesterday about " how bad is bad going to get as far as being hypo is concerned " --she told me that it varies WIDELY and is totally dependent upon how sensitive a person is to the tsh. She said she had a patient who was working and doing fine with a tsh over 1,000 and she has had others who were feeling extremely bad with a tsh of 20. So....this has me wondering IF PERHAPS the exact tsh number isn't as important as the 6 week time period. I know it takes 6 weeks for the T4 to leave our bodies, so maybe that's the WHY behind the " protocol. " So, maybe you could use this information to talk to your doc again. Also, I want to echo what the others have said about being on Cytomel for the first 4 weeks of the 6 week hypo time. I have had more energy on Cytomel than I ever had on Synthroid, so actualy I've felt BETTER during hypo time, so far. I even took the kids to an amusement park for the day and we had the best time ever. Usually ( on Synthroid) I am way too exhausted to enjoy it, but this time I had no problem keeping up with the kids and in fact they were tired a long time before I was. So, if I were you, I would definitely ask my doc for a prescription of Cytome until those last 2 hypo weeks. --Chris tt 4/01; papillary w/ follicular var; RAI ablation for 7/23/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 In a message dated 6/28/2001 7:24:33 PM Eastern Daylight Time, terrianddarren2000@... writes: > The nuclear med dr. even told > me that this is protocol. He said if I could not handle it, go > back on my Synthroid, and forget the scan. I haven't had a clean > scan yet, so I do not feel comfortable with that. > > Anyone else ever feel this type of frustration? No, it sounds to me like your doctor is just being rigid. I'm on Cytomel right now, off my Synthroid, on week 2, and I have my first TSH drawn at week 5 (one week off Cytomel) and if my TSH is > 30, I'll be scanned. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 In a message dated 6/28/2001 7:24:33 PM Eastern Daylight Time, terrianddarren2000@... writes: > The nuclear med dr. even told > me that this is protocol. He said if I could not handle it, go > back on my Synthroid, and forget the scan. I haven't had a clean > scan yet, so I do not feel comfortable with that. > > Anyone else ever feel this type of frustration? No, it sounds to me like your doctor is just being rigid. I'm on Cytomel right now, off my Synthroid, on week 2, and I have my first TSH drawn at week 5 (one week off Cytomel) and if my TSH is > 30, I'll be scanned. Kathy Quote Link to comment Share on other sites More sharing options...
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