Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it from the library (mostly for my mom, but out of curiosity myself, too). I'll let you know how it is! RE: You all were right - disappointed in doc >Hi Amy, >How are you doing and feeling? Still on bedrest? > > Shomon has a good book on living with hypothyroidism, but I can't >remember the exact title. Elaine knows it I think. > >I agree with you, I hate the TSH! > >Hope all is well with you, take care, >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 February 8, 2002 Report Share Posted February 8, 2002 Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it from the library (mostly for my mom, but out of curiosity myself, too). I'll let you know how it is! RE: You all were right - disappointed in doc >Hi Amy, >How are you doing and feeling? Still on bedrest? > > Shomon has a good book on living with hypothyroidism, but I can't >remember the exact title. Elaine knows it I think. > >I agree with you, I hate the TSH! > >Hope all is well with you, take care, >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 February 8, 2002 Report Share Posted February 8, 2002 Amy and Jody - the book is " Living Well with Hypothyroidism " - I just got it from the library (mostly for my mom, but out of curiosity myself, too). I'll let you know how it is! RE: You all were right - disappointed in doc >Hi Amy, >How are you doing and feeling? Still on bedrest? > > Shomon has a good book on living with hypothyroidism, but I can't >remember the exact title. Elaine knows it I think. > >I agree with you, I hate the TSH! > >Hope all is well with you, take care, >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 February 8, 2002 Report Share Posted February 8, 2002 Hi Pam - Thanks for all the positive comments. First of all, I don't think you should _ever_ have to feel afraid to post a result because people won't believe you aren't feeling good just because it's in a " normal " range. I think there's been enough discussion here of the individualness of what is " normal " that no one would question you if you said you still didn't feel right! When I got my results, I thought I was a little nuts to feel kind of " hypo " with a FT4 of .85 (not that much higher than yours). I definitely feel more hypo symptoms than hyper! I don't necessarily feel bad, but I do get a tired earlier than I usually do, definitely colder (my basal body temp is 97.5 - 97.7), and I've gained 3 lbs. (doesn't seem like a lot, but my non-pregnancy weight, with the exception of the weight I lost while hyper, has been the same for 10 years). I told Terry that Elaine had commented to me before that the body can reflect changes from a high T4 level to a more normal T4 like a change to actual hypo. If the body was used to a T4 at a high level and it went down to a lower normal level, the body can " feel " like it's hypo. I thought this made a lot of sense and may be able to explain what you're feeling and/or it may be that you are going hypo. I worry about this same thing happening myself. My FT4 doesn't have far to go before it's below normal. And we already found out about how my doc won't do anything about that! As for a naturopath, I saw one (the _only_ one in my area) and he admitted he didn't know much about thyroid diseases and didn't think he could really help me. (I appreciated his honesty.) There's supposedly a Chinese medicine doc about 1/2 hour from me (same town as the only endos), but I don't know enough it to know if he could do anything for me. I'll be interested in the name of that book when you get it - sounds fascinating! I'm going to have to try and find some bugleweed tincture here (not a whole lot of places around here to get that sort of thing), but maybe I'll get lucky. Does the tinctur e have a very high alcohol content? I really have a low tolerance for alcohol (and that was before the GD!) Hope you feel better with the bugleweed than the PTU - also hope your FT4 doesn't go down any more, but if it does, you'll have to let me know what your doc says. Just for curiosity, what is your TSH now? Is it " normal " ? :-) Re: You all were right - disappointed in doc >Hi , > >You said: >For all you on ATDs, Pam I think in particular mentioned that while you were >on ATDs, your FT4 did go low and your TSH was still low. Did you in fact >FEEL hypo in that case? I got the impression that the FT4 levels did >accurately reflect whether people felt hypo, but this doctor makes me think >that isn't so! And I know there were so many of you that your TSH did take a >long to time increase on ATDs. > >At this point and time I am more confused than before. My TSH stayed suppressed over 3 yr. >Yes, this in no problem. But I vary much in the way I feel at different FT4 levels, and >after this last scare with the doc threatening me with switching to Tap because of the >pain, I have been working out my own little reduction schedule in my PTU. All the while >getting some lab work. But as I pay for everything myself, I do not have as many numbers >to work with as some of you. > >So now I am starting to wonder if my problem all along was the amount of PTU making me >hypo combined with the PTU itself that caused so much pain. >For example, back some time ago, I felt so hypo,among other things, I hurt too bad to turn >over in my bed, and had no desire to continue living ( thank God for thyroid boards ). >This was at a FT4 of .78 on a scale of .71 to 1.85. When the doctor examined me, he did >that thing where you hold your hands together with your elbows out, and he pushes down on >your elbows to check your strength. It hurt so bad, I folded like a deck of cards and >moaned against my will. He said..you need to get some exersize....like that was the >problem. I am still mad, but I keep thinking...why did he not think this was normal for >being low on T4 ??? I see people all the time that are sub clinical hypo and do not have >this pain. > >And to be honest, I have not posted this number here, for fear that no one would believe I >was really sick. So now I come clean in an effort to not only understand more, but to let >you know of my past ( and present ) confusion, and let you know I think it is only the PTU >causing the problem. I do not think you should worry about a lower T test at all. You >would have your body doing things the way it knows to heal and not have a drug confusing >things. > >And now the confirmation from those answering your post. It seems your question has helped >me. :-) It must be the PTU and not the hypo part. > >How do others feel at .78 ? I always read we feel better at the higher end of the range, >so had just assumed this was the problem. > >It certainly seems you are on the right path . Good job ! > >-Pam- who is seeing your wisdom more everyday > > > >------------------------------------- >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 February 8, 2002 Report Share Posted February 8, 2002 Hi Pam - Thanks for all the positive comments. First of all, I don't think you should _ever_ have to feel afraid to post a result because people won't believe you aren't feeling good just because it's in a " normal " range. I think there's been enough discussion here of the individualness of what is " normal " that no one would question you if you said you still didn't feel right! When I got my results, I thought I was a little nuts to feel kind of " hypo " with a FT4 of .85 (not that much higher than yours). I definitely feel more hypo symptoms than hyper! I don't necessarily feel bad, but I do get a tired earlier than I usually do, definitely colder (my basal body temp is 97.5 - 97.7), and I've gained 3 lbs. (doesn't seem like a lot, but my non-pregnancy weight, with the exception of the weight I lost while hyper, has been the same for 10 years). I told Terry that Elaine had commented to me before that the body can reflect changes from a high T4 level to a more normal T4 like a change to actual hypo. If the body was used to a T4 at a high level and it went down to a lower normal level, the body can " feel " like it's hypo. I thought this made a lot of sense and may be able to explain what you're feeling and/or it may be that you are going hypo. I worry about this same thing happening myself. My FT4 doesn't have far to go before it's below normal. And we already found out about how my doc won't do anything about that! As for a naturopath, I saw one (the _only_ one in my area) and he admitted he didn't know much about thyroid diseases and didn't think he could really help me. (I appreciated his honesty.) There's supposedly a Chinese medicine doc about 1/2 hour from me (same town as the only endos), but I don't know enough it to know if he could do anything for me. I'll be interested in the name of that book when you get it - sounds fascinating! I'm going to have to try and find some bugleweed tincture here (not a whole lot of places around here to get that sort of thing), but maybe I'll get lucky. Does the tinctur e have a very high alcohol content? I really have a low tolerance for alcohol (and that was before the GD!) Hope you feel better with the bugleweed than the PTU - also hope your FT4 doesn't go down any more, but if it does, you'll have to let me know what your doc says. Just for curiosity, what is your TSH now? Is it " normal " ? :-) Re: You all were right - disappointed in doc >Hi , > >You said: >For all you on ATDs, Pam I think in particular mentioned that while you were >on ATDs, your FT4 did go low and your TSH was still low. Did you in fact >FEEL hypo in that case? I got the impression that the FT4 levels did >accurately reflect whether people felt hypo, but this doctor makes me think >that isn't so! And I know there were so many of you that your TSH did take a >long to time increase on ATDs. > >At this point and time I am more confused than before. My TSH stayed suppressed over 3 yr. >Yes, this in no problem. But I vary much in the way I feel at different FT4 levels, and >after this last scare with the doc threatening me with switching to Tap because of the >pain, I have been working out my own little reduction schedule in my PTU. All the while >getting some lab work. But as I pay for everything myself, I do not have as many numbers >to work with as some of you. > >So now I am starting to wonder if my problem all along was the amount of PTU making me >hypo combined with the PTU itself that caused so much pain. >For example, back some time ago, I felt so hypo,among other things, I hurt too bad to turn >over in my bed, and had no desire to continue living ( thank God for thyroid boards ). >This was at a FT4 of .78 on a scale of .71 to 1.85. When the doctor examined me, he did >that thing where you hold your hands together with your elbows out, and he pushes down on >your elbows to check your strength. It hurt so bad, I folded like a deck of cards and >moaned against my will. He said..you need to get some exersize....like that was the >problem. I am still mad, but I keep thinking...why did he not think this was normal for >being low on T4 ??? I see people all the time that are sub clinical hypo and do not have >this pain. > >And to be honest, I have not posted this number here, for fear that no one would believe I >was really sick. So now I come clean in an effort to not only understand more, but to let >you know of my past ( and present ) confusion, and let you know I think it is only the PTU >causing the problem. I do not think you should worry about a lower T test at all. You >would have your body doing things the way it knows to heal and not have a drug confusing >things. > >And now the confirmation from those answering your post. It seems your question has helped >me. :-) It must be the PTU and not the hypo part. > >How do others feel at .78 ? I always read we feel better at the higher end of the range, >so had just assumed this was the problem. > >It certainly seems you are on the right path . Good job ! > >-Pam- who is seeing your wisdom more everyday > > > >------------------------------------- >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 February 8, 2002 Report Share Posted February 8, 2002 Hi Amy, Don't forget we are here for your support too! I miss your posts in group and will look forward to you not forgetting us and keeping us up to date and counting down with us until your big day! Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 Hi Amy, Don't forget we are here for your support too! I miss your posts in group and will look forward to you not forgetting us and keeping us up to date and counting down with us until your big day! Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 Thats the one I just got for my mom! When she is done I'm going to read it I was slightly hypo a while back but not enough for treatment of course Bed Rest SUCKS I have learned that when the baby is low I have to lay down more but when he is high I can sit up more. My cross stitch is coming along nicely <VBG> I actually started looking online for jobs to see if I can do something from home. I do computer stuff if anyone sees anything I had some bleeding yesterday but its from a polyp. The dr debated removing it but decided not to. So, I can probably expect it to cause slight spotting in the future. Some days I do great - others I think i'm losing my mind There are some great bed rest support sites out there. Thanks for asking Amy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Thats the one I just got for my mom! When she is done I'm going to read it I was slightly hypo a while back but not enough for treatment of course Bed Rest SUCKS I have learned that when the baby is low I have to lay down more but when he is high I can sit up more. My cross stitch is coming along nicely <VBG> I actually started looking online for jobs to see if I can do something from home. I do computer stuff if anyone sees anything I had some bleeding yesterday but its from a polyp. The dr debated removing it but decided not to. So, I can probably expect it to cause slight spotting in the future. Some days I do great - others I think i'm losing my mind There are some great bed rest support sites out there. Thanks for asking Amy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 You are so sweet You should get the MVP award or something LOL Amy RE: You all were right - disappointed in doc Hi Amy, Don't forget we are here for your support too! I miss your posts in group and will look forward to you not forgetting us and keeping us up to date and counting down with us until your big day! Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 You are so sweet You should get the MVP award or something LOL Amy RE: You all were right - disappointed in doc Hi Amy, Don't forget we are here for your support too! I miss your posts in group and will look forward to you not forgetting us and keeping us up to date and counting down with us until your big day! Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 You are so sweet You should get the MVP award or something LOL Amy RE: You all were right - disappointed in doc Hi Amy, Don't forget we are here for your support too! I miss your posts in group and will look forward to you not forgetting us and keeping us up to date and counting down with us until your big day! Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 Its a laptop - I'd DIE without it. I can lay on my side and use it. I haven't gotten into games too much yet, but there is still 4 months to go - so send them along LOL Amy RE: You all were right - disappointed in doc LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 Its a laptop - I'd DIE without it. I can lay on my side and use it. I haven't gotten into games too much yet, but there is still 4 months to go - so send them along LOL Amy RE: You all were right - disappointed in doc LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 Its a laptop - I'd DIE without it. I can lay on my side and use it. I haven't gotten into games too much yet, but there is still 4 months to go - so send them along LOL Amy RE: You all were right - disappointed in doc LOL...and you are very very quick! I know some good free game sites if you want them They might help pass the time for you. Can you be up on the computer for very long at a time? 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 February 8, 2002 Report Share Posted February 8, 2002 -Dear : I really feel for you too, just went through your EXACT experience just exactly one week ago (See my message #11316 and responses) when my doc called about lab results. I have been on PTU for only 4 months since my initial GD diagnosis and during the visit he was saying how he thinks my labs will finally show my tsh going up by now. In my head I remembered reading and seeing posts about how tsh takes a long time and not to rely on this tests during atd's but I just didn't really trust my memory at the moment. Then the call comes...all my labs FT4, FT3, normal (as they have been for 3 1/2 months now) but tsh still 0.01. I feel fine but he is all concerned and even consulted with other docs about this. What's so sad is here I am in NYC at Columibia Med. center and here are 3 doctors all concerned about tsh not rising after only 4 months !!?? This is just so depressing that docs all over this country are just so clueless. I am in the process of gathering articles and literature to mail him regarding the tsh levels so he will hopefully be more patient. I just wanted to say I sympathize with your situation, I was all bummed out too thinking, geez I would hate to have to go through the process of finding another doc (and I do like this guy he spends alot of time with me and is caring) since he obviously does not know alot about this disease !! Keep your chin up. -- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote: > Sigh, well I am now officially joining the ranks of those disappointed and > discouraged by their doctors. I was trying not to be pessimistic and giving > my doc the benefit of the doubt, but and all you others who warned me > were right on target! > > Doc wanted to discuss my latest lab results (where my FT4 and FT3 were > normal, TSI were in normal range, but TSH was still .03) Apparently all he > cared about was that the TSH was still .03. He recommended that I do RAI. > Said that my thyroid is still hyperfunctioning and that most women in my > situation (why particularly did he say women I wondered) would have had the > RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was only > elevated for 3 of those months, and even the TSH has only been low for less > than a year. > > He was concerned that my TSH was still too low and I pointed out that > perhaps it just hasn't had enough time to come back up yet since my FT4 has > only been coming down for the last 4 months and said that I'd read that it > can take TSH 18 months to increase. (Apparently my doc needs to read your > article about TSH on Suite 101, Elaine.) He then argued that it doesn't take > that long because the TSH is a much more sensitive measurement of thyroid > function. True, I said, but it can take time for the pituitary to respond to > the changes. His argument for TSH not taking that long to respond was that > when you're hypo and you decrease the amount of replacement T4 you're > taking, you will see an increase in TSH in about 4 weeks. Sure, I accept > this as being true, but didn't know the specific mechanism for why hypers' > TSH takes longer to respond, and found it pointless to argue since he was so > firm in his convictions. > > I asked what would be the point of having RAI at this point in time, since > my FT4 and FT3 are normal and my TSI have gone down? If I had RAI, my TSI > would most likely increase and I would surely become hypo. He asked why I > thought my TSI would increase and I explained about the RAI initially making > hyper worse from the blasting effect and elevating the TSI levels and > possibly developing GO. He said, " Oh, that (the TSI becoming elevated) > rarely ever happens! " > > He also refused to even consider the possibility that I may become hypO or > may also have Hashimoto's antibodies. I suggested that it wouldn't be too > unreasonable to believe since my mother has Hashimoto's. He said that > Hashimoto's was very rare and thyroid diseases aren't often familial. OK, > now I can recognize this as total BS! My mom's family has a very long line > of thyroid disease, both hyper and hypo, autoimmune and not! I completely > lost any credibility I had for him at that junction. He also said it was > very unlikely that I would have TSH receptor blocking antibodies after I > suggested that. (Yeah, buddy, but I'm already a statistical anomaly). > > Now, to his credit (what little is left), his is still willing to have my > labwork checked every 3 months and monitor. I posed a hypothetical question > as to what he would think if next time I had my labs done in 3 months if my > FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 - 1.85). He > asked what hypothetically my TSH would be and I suggested that it would > still be below normal range (because I don't think it's going to go up > _that_ much in 3 months!). I was wondering if he would consider the > possibility that I had Hashi's if that occurred, but he said if my TSH was > still below normal even if the FT4 was below normal he would consider me > hyperthyroid. So now I have no idea what I will do now if that does in fact > happen. (Yes, I like to worry about all my possibilities, but this one > doesn't seem too unreasonable the way I'm going.) > > For all you on ATDs, Pam I think in particular mentioned that while you were > on ATDs, your FT4 did go low and your TSH was still low. Did you in fact > FEEL hypo in that case? I got the impression that the FT4 levels did > accurately reflect whether people felt hypo, but this doctor makes me think > that isn't so! And I know there were so many of you that your TSH did take a > long to time increase on ATDs. > > , what exactly happened when you went hypo after being diagnosed with GD > and going into spontaneous remission? Did your doctors have a difficult time > believing it? How and when did they consider the possibility that you might > have had GD and HT both? We can certainly take this off-line if it's you > don't think it's pertinent to the group as a whole. > > Man, just when I was feeling so happy about my new lab results! I'm a bit > disillusioned now. I can really understand how easily people are pushed into > RAI now. I was so calm and non-threatening, I was just asking questions > backed up by facts I had read. I really hate when doctors get so defensive > when you question their recommendations. I feel almost as though I have done > something wrong by becoming more informed about my disease. > > Sorry to be so long-winded! Didn't mean to just pour my guts out all over > the group! I was just wishing I had someone to call and vent to after the > appointment, someone who understood what I was talking about with all the > thyroid terms, anyway! My parents are in Florida on a much deserved > vacation, and I didn't want to get Mom all riled up when she's supposed to > be relaxing. My hubby just announced that we're going to have to close up > his business (he's self-employed) and get a " real job " so he's REALLY > depressed about that. He graciously listened to my vent and sympathized, but > he's got enough to worry about now in how to tell our employees. > > So thanks if you've made it this far and are still awake (maybe I've found > the cure for those with sleep problems!) I appreciate you all being there to > listen! In the big scheme of things, this really isn't a major problem, > what's important is that I'm getting better. It's just another > disappointment in a day of too many disappointments already! > > Hope you all are having a better day and feeling good (special good luck to > ) > > > > Re: Got my labs back - amazed! > > > > ! > > > > Great news! > > > > Be prepared, however. Your doc may only be looking at the TSH and still > > thinking about treatment. Perhaps that's the reason he wants to see you. > > Hopefully not, but best to walk in with your convictions solid and > prepared > > for anything. > > > > B > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 -Dear : I really feel for you too, just went through your EXACT experience just exactly one week ago (See my message #11316 and responses) when my doc called about lab results. I have been on PTU for only 4 months since my initial GD diagnosis and during the visit he was saying how he thinks my labs will finally show my tsh going up by now. In my head I remembered reading and seeing posts about how tsh takes a long time and not to rely on this tests during atd's but I just didn't really trust my memory at the moment. Then the call comes...all my labs FT4, FT3, normal (as they have been for 3 1/2 months now) but tsh still 0.01. I feel fine but he is all concerned and even consulted with other docs about this. What's so sad is here I am in NYC at Columibia Med. center and here are 3 doctors all concerned about tsh not rising after only 4 months !!?? This is just so depressing that docs all over this country are just so clueless. I am in the process of gathering articles and literature to mail him regarding the tsh levels so he will hopefully be more patient. I just wanted to say I sympathize with your situation, I was all bummed out too thinking, geez I would hate to have to go through the process of finding another doc (and I do like this guy he spends alot of time with me and is caring) since he obviously does not know alot about this disease !! Keep your chin up. -- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote: > Sigh, well I am now officially joining the ranks of those disappointed and > discouraged by their doctors. I was trying not to be pessimistic and giving > my doc the benefit of the doubt, but and all you others who warned me > were right on target! > > Doc wanted to discuss my latest lab results (where my FT4 and FT3 were > normal, TSI were in normal range, but TSH was still .03) Apparently all he > cared about was that the TSH was still .03. He recommended that I do RAI. > Said that my thyroid is still hyperfunctioning and that most women in my > situation (why particularly did he say women I wondered) would have had the > RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was only > elevated for 3 of those months, and even the TSH has only been low for less > than a year. > > He was concerned that my TSH was still too low and I pointed out that > perhaps it just hasn't had enough time to come back up yet since my FT4 has > only been coming down for the last 4 months and said that I'd read that it > can take TSH 18 months to increase. (Apparently my doc needs to read your > article about TSH on Suite 101, Elaine.) He then argued that it doesn't take > that long because the TSH is a much more sensitive measurement of thyroid > function. True, I said, but it can take time for the pituitary to respond to > the changes. His argument for TSH not taking that long to respond was that > when you're hypo and you decrease the amount of replacement T4 you're > taking, you will see an increase in TSH in about 4 weeks. Sure, I accept > this as being true, but didn't know the specific mechanism for why hypers' > TSH takes longer to respond, and found it pointless to argue since he was so > firm in his convictions. > > I asked what would be the point of having RAI at this point in time, since > my FT4 and FT3 are normal and my TSI have gone down? If I had RAI, my TSI > would most likely increase and I would surely become hypo. He asked why I > thought my TSI would increase and I explained about the RAI initially making > hyper worse from the blasting effect and elevating the TSI levels and > possibly developing GO. He said, " Oh, that (the TSI becoming elevated) > rarely ever happens! " > > He also refused to even consider the possibility that I may become hypO or > may also have Hashimoto's antibodies. I suggested that it wouldn't be too > unreasonable to believe since my mother has Hashimoto's. He said that > Hashimoto's was very rare and thyroid diseases aren't often familial. OK, > now I can recognize this as total BS! My mom's family has a very long line > of thyroid disease, both hyper and hypo, autoimmune and not! I completely > lost any credibility I had for him at that junction. He also said it was > very unlikely that I would have TSH receptor blocking antibodies after I > suggested that. (Yeah, buddy, but I'm already a statistical anomaly). > > Now, to his credit (what little is left), his is still willing to have my > labwork checked every 3 months and monitor. I posed a hypothetical question > as to what he would think if next time I had my labs done in 3 months if my > FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 - 1.85). He > asked what hypothetically my TSH would be and I suggested that it would > still be below normal range (because I don't think it's going to go up > _that_ much in 3 months!). I was wondering if he would consider the > possibility that I had Hashi's if that occurred, but he said if my TSH was > still below normal even if the FT4 was below normal he would consider me > hyperthyroid. So now I have no idea what I will do now if that does in fact > happen. (Yes, I like to worry about all my possibilities, but this one > doesn't seem too unreasonable the way I'm going.) > > For all you on ATDs, Pam I think in particular mentioned that while you were > on ATDs, your FT4 did go low and your TSH was still low. Did you in fact > FEEL hypo in that case? I got the impression that the FT4 levels did > accurately reflect whether people felt hypo, but this doctor makes me think > that isn't so! And I know there were so many of you that your TSH did take a > long to time increase on ATDs. > > , what exactly happened when you went hypo after being diagnosed with GD > and going into spontaneous remission? Did your doctors have a difficult time > believing it? How and when did they consider the possibility that you might > have had GD and HT both? We can certainly take this off-line if it's you > don't think it's pertinent to the group as a whole. > > Man, just when I was feeling so happy about my new lab results! I'm a bit > disillusioned now. I can really understand how easily people are pushed into > RAI now. I was so calm and non-threatening, I was just asking questions > backed up by facts I had read. I really hate when doctors get so defensive > when you question their recommendations. I feel almost as though I have done > something wrong by becoming more informed about my disease. > > Sorry to be so long-winded! Didn't mean to just pour my guts out all over > the group! I was just wishing I had someone to call and vent to after the > appointment, someone who understood what I was talking about with all the > thyroid terms, anyway! My parents are in Florida on a much deserved > vacation, and I didn't want to get Mom all riled up when she's supposed to > be relaxing. My hubby just announced that we're going to have to close up > his business (he's self-employed) and get a " real job " so he's REALLY > depressed about that. He graciously listened to my vent and sympathized, but > he's got enough to worry about now in how to tell our employees. > > So thanks if you've made it this far and are still awake (maybe I've found > the cure for those with sleep problems!) I appreciate you all being there to > listen! In the big scheme of things, this really isn't a major problem, > what's important is that I'm getting better. It's just another > disappointment in a day of too many disappointments already! > > Hope you all are having a better day and feeling good (special good luck to > ) > > > > Re: Got my labs back - amazed! > > > > ! > > > > Great news! > > > > Be prepared, however. Your doc may only be looking at the TSH and still > > thinking about treatment. Perhaps that's the reason he wants to see you. > > Hopefully not, but best to walk in with your convictions solid and > prepared > > for anything. > > > > B > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 -Dear : I really feel for you too, just went through your EXACT experience just exactly one week ago (See my message #11316 and responses) when my doc called about lab results. I have been on PTU for only 4 months since my initial GD diagnosis and during the visit he was saying how he thinks my labs will finally show my tsh going up by now. In my head I remembered reading and seeing posts about how tsh takes a long time and not to rely on this tests during atd's but I just didn't really trust my memory at the moment. Then the call comes...all my labs FT4, FT3, normal (as they have been for 3 1/2 months now) but tsh still 0.01. I feel fine but he is all concerned and even consulted with other docs about this. What's so sad is here I am in NYC at Columibia Med. center and here are 3 doctors all concerned about tsh not rising after only 4 months !!?? This is just so depressing that docs all over this country are just so clueless. I am in the process of gathering articles and literature to mail him regarding the tsh levels so he will hopefully be more patient. I just wanted to say I sympathize with your situation, I was all bummed out too thinking, geez I would hate to have to go through the process of finding another doc (and I do like this guy he spends alot of time with me and is caring) since he obviously does not know alot about this disease !! Keep your chin up. -- In graves_support@y..., " L. Buck " <mlbuck@q...> wrote: > Sigh, well I am now officially joining the ranks of those disappointed and > discouraged by their doctors. I was trying not to be pessimistic and giving > my doc the benefit of the doubt, but and all you others who warned me > were right on target! > > Doc wanted to discuss my latest lab results (where my FT4 and FT3 were > normal, TSI were in normal range, but TSH was still .03) Apparently all he > cared about was that the TSH was still .03. He recommended that I do RAI. > Said that my thyroid is still hyperfunctioning and that most women in my > situation (why particularly did he say women I wondered) would have had the > RAI by now. Geez! I was just diagnosed 6 months ago, and my FT4 was only > elevated for 3 of those months, and even the TSH has only been low for less > than a year. > > He was concerned that my TSH was still too low and I pointed out that > perhaps it just hasn't had enough time to come back up yet since my FT4 has > only been coming down for the last 4 months and said that I'd read that it > can take TSH 18 months to increase. (Apparently my doc needs to read your > article about TSH on Suite 101, Elaine.) He then argued that it doesn't take > that long because the TSH is a much more sensitive measurement of thyroid > function. True, I said, but it can take time for the pituitary to respond to > the changes. His argument for TSH not taking that long to respond was that > when you're hypo and you decrease the amount of replacement T4 you're > taking, you will see an increase in TSH in about 4 weeks. Sure, I accept > this as being true, but didn't know the specific mechanism for why hypers' > TSH takes longer to respond, and found it pointless to argue since he was so > firm in his convictions. > > I asked what would be the point of having RAI at this point in time, since > my FT4 and FT3 are normal and my TSI have gone down? If I had RAI, my TSI > would most likely increase and I would surely become hypo. He asked why I > thought my TSI would increase and I explained about the RAI initially making > hyper worse from the blasting effect and elevating the TSI levels and > possibly developing GO. He said, " Oh, that (the TSI becoming elevated) > rarely ever happens! " > > He also refused to even consider the possibility that I may become hypO or > may also have Hashimoto's antibodies. I suggested that it wouldn't be too > unreasonable to believe since my mother has Hashimoto's. He said that > Hashimoto's was very rare and thyroid diseases aren't often familial. OK, > now I can recognize this as total BS! My mom's family has a very long line > of thyroid disease, both hyper and hypo, autoimmune and not! I completely > lost any credibility I had for him at that junction. He also said it was > very unlikely that I would have TSH receptor blocking antibodies after I > suggested that. (Yeah, buddy, but I'm already a statistical anomaly). > > Now, to his credit (what little is left), his is still willing to have my > labwork checked every 3 months and monitor. I posed a hypothetical question > as to what he would think if next time I had my labs done in 3 months if my > FT4 was BELOW normal (currently it's 0.85 in a range of 0.71 - 1.85). He > asked what hypothetically my TSH would be and I suggested that it would > still be below normal range (because I don't think it's going to go up > _that_ much in 3 months!). I was wondering if he would consider the > possibility that I had Hashi's if that occurred, but he said if my TSH was > still below normal even if the FT4 was below normal he would consider me > hyperthyroid. So now I have no idea what I will do now if that does in fact > happen. (Yes, I like to worry about all my possibilities, but this one > doesn't seem too unreasonable the way I'm going.) > > For all you on ATDs, Pam I think in particular mentioned that while you were > on ATDs, your FT4 did go low and your TSH was still low. Did you in fact > FEEL hypo in that case? I got the impression that the FT4 levels did > accurately reflect whether people felt hypo, but this doctor makes me think > that isn't so! And I know there were so many of you that your TSH did take a > long to time increase on ATDs. > > , what exactly happened when you went hypo after being diagnosed with GD > and going into spontaneous remission? Did your doctors have a difficult time > believing it? How and when did they consider the possibility that you might > have had GD and HT both? We can certainly take this off-line if it's you > don't think it's pertinent to the group as a whole. > > Man, just when I was feeling so happy about my new lab results! I'm a bit > disillusioned now. I can really understand how easily people are pushed into > RAI now. I was so calm and non-threatening, I was just asking questions > backed up by facts I had read. I really hate when doctors get so defensive > when you question their recommendations. I feel almost as though I have done > something wrong by becoming more informed about my disease. > > Sorry to be so long-winded! Didn't mean to just pour my guts out all over > the group! I was just wishing I had someone to call and vent to after the > appointment, someone who understood what I was talking about with all the > thyroid terms, anyway! My parents are in Florida on a much deserved > vacation, and I didn't want to get Mom all riled up when she's supposed to > be relaxing. My hubby just announced that we're going to have to close up > his business (he's self-employed) and get a " real job " so he's REALLY > depressed about that. He graciously listened to my vent and sympathized, but > he's got enough to worry about now in how to tell our employees. > > So thanks if you've made it this far and are still awake (maybe I've found > the cure for those with sleep problems!) I appreciate you all being there to > listen! In the big scheme of things, this really isn't a major problem, > what's important is that I'm getting better. It's just another > disappointment in a day of too many disappointments already! > > Hope you all are having a better day and feeling good (special good luck to > ) > > > > Re: Got my labs back - amazed! > > > > ! > > > > Great news! > > > > Be prepared, however. Your doc may only be looking at the TSH and still > > thinking about treatment. Perhaps that's the reason he wants to see you. > > Hopefully not, but best to walk in with your convictions solid and > prepared > > for anything. > > > > B > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Hi , If you really like this doc and you have a good line of communication with him, then maybe he will respond with the information you are sending him. This could make all the difference in his future patients and hopefully get him interested enough to do some up to date research and learn from us. Maybe that is part of what we are all about, helping to bring some of our docs into this new century. Don't give up hope on him yet...and always remember, your treatment decision is YOURS, not his, no matter what he may want to do. Take care, 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 February 8, 2002 Report Share Posted February 8, 2002 Hi , If you really like this doc and you have a good line of communication with him, then maybe he will respond with the information you are sending him. This could make all the difference in his future patients and hopefully get him interested enough to do some up to date research and learn from us. Maybe that is part of what we are all about, helping to bring some of our docs into this new century. Don't give up hope on him yet...and always remember, your treatment decision is YOURS, not his, no matter what he may want to do. Take care, 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 February 11, 2002 Report Share Posted February 11, 2002 Hi Katy, I went very hypO two months after being on ATDs, to the point that I had to go off of them for three days to de-hypO me! So, it is possible to go hypO that soon. I know when I'm on the hypO side because I get " puffy " and I get a headache that never goes away. But, it is so hard to tell when you're borderline! Take care, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi Katy, I went very hypO two months after being on ATDs, to the point that I had to go off of them for three days to de-hypO me! So, it is possible to go hypO that soon. I know when I'm on the hypO side because I get " puffy " and I get a headache that never goes away. But, it is so hard to tell when you're borderline! Take care, Holly Quote Link to comment Share on other sites More sharing options...
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