Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over time. The gland burns itself out. Endos know that and rush along the inevitable with RAI. I'm new to the list and haven't been around long enough to hear all of the supposed long term effects of RAI. Would be interested in finding out, since I had it done a little over two years ago. For me, after taking meds for 18 months and then coming out of remission, I didn't want to bother with the meds and then have a roller coaster ride of coming in and out of remission until I finally went hypo. Any other thoughts on the topic? Renée Mom to , 10, and Sierra Dawn, 08/22/99 http://cscoggin.home.netcom.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Are you saying you are not taking synthroid or an equivalent now? Elaine RE: What I've Learned > Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over time. > The gland burns itself out. Endos know that and rush along the inevitable > with RAI. I'm new to the list and haven't been around long enough to hear > all of the supposed long term effects of RAI. Would be interested in > finding out, since I had it done a little over two years ago. For me, after > taking meds for 18 months and then coming out of remission, I didn't want to > bother with the meds and then have a roller coaster ride of coming in and > out of remission until I finally went hypo. Any other thoughts on the > topic? > > Renée > Mom to , 10, > and Sierra Dawn, 08/22/99 > http://cscoggin.home.netcom.com > > > > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/3/_/585824/_/955043152/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Is it a proven fact that most Grave's patients end up hypothyroid over time? And do you mean on a permanent basis? This is the first I have heard it is inevitable. My new endo gave me these statistics: 50% of ATD patients go into remission. Of the 50% that do not go into remission, or stay in remission, another 50% will ultimately go into remission with further meds. Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he said " remission? " If the numbers above are close to correct, seems to me I have a very good chance with the meds, since 100% of RAI patients will go hypo. Plus, there's always hope for a different treatment around the corner. Speaking of alternative treatment, my new endo said they are now working on ways to kill the antibodies that attack the thyroid - sounds closer to the source, but still does not address the root of the problem -- why did our autoimmune systems feel obliged to act in the first place? At 01:16 PM 04/06/2000 -0400, you wrote: >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over time. >The gland burns itself out. Endos know that and rush along the inevitable >with RAI. I Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 , Regarding your statistics, my doctor swears that my high level of thyroid can not be controlled with ATDs. I took Tapazole for 3 weeks and my thryoid levels keep going up. My doctor told me that by continuing ATD's I am endangering my health by putting stress on my heart and increasing my chances of developing eye problems. Basicly, he told me that I did not have the " time " to waste getting more effective treatment. I am not a candidate for Radioactive Iodine either, being that I can not do without medication for 6-8 weeks prior to Radioactive Iodine due to my symptoms. e RE: What I've Learned > Is it a proven fact that most Grave's patients end up hypothyroid over > time? And do you mean on a permanent basis? This is the first I have > heard it is inevitable. My new endo gave me these statistics: > > 50% of ATD patients go into remission. > Of the 50% that do not go into remission, or stay in remission, another 50% > will ultimately go into remission with further meds. > > Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he > said " remission? " If the numbers above are close to correct, seems to me > I have a very good chance with the meds, since 100% of RAI patients will go > hypo. Plus, there's always hope for a different treatment around the corner. > > Speaking of alternative treatment, my new endo said they are now working on > ways to kill the antibodies that attack the thyroid - sounds closer to the > source, but still does not address the root of the problem -- why did our > autoimmune systems feel obliged to act in the first place? > > > At 01:16 PM 04/06/2000 -0400, you wrote: > >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over time. > >The gland burns itself out. Endos know that and rush along the inevitable > >with RAI. I > > > > Shen > Holy Macro! > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/3/_/585824/_/955046434/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 So what are your options? At 03:27 PM 04/06/2000 -0500, you wrote: >, > >Regarding your statistics, my doctor swears that my high level of thyroid >can not be controlled with ATDs. I took Tapazole for 3 weeks and my thryoid >levels keep going up. My doctor told me that by continuing ATD's I am >endangering my health by putting stress on my heart and increasing my >chances of developing eye problems. Basicly, he told me that I did not have >the " time " to waste getting more effective treatment. I am not a candidate >for Radioactive Iodine either, being that I can not do without medication >for 6-8 weeks prior to Radioactive Iodine due to my symptoms. > >e > > > > RE: What I've Learned > > >> Is it a proven fact that most Grave's patients end up hypothyroid over >> time? And do you mean on a permanent basis? This is the first I have >> heard it is inevitable. My new endo gave me these statistics: >> >> 50% of ATD patients go into remission. >> Of the 50% that do not go into remission, or stay in remission, another >50% >> will ultimately go into remission with further meds. >> >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he >> said " remission? " If the numbers above are close to correct, seems to >me >> I have a very good chance with the meds, since 100% of RAI patients will >go >> hypo. Plus, there's always hope for a different treatment around the >corner. >> >> Speaking of alternative treatment, my new endo said they are now working >on >> ways to kill the antibodies that attack the thyroid - sounds closer to the >> source, but still does not address the root of the problem -- why did our >> autoimmune systems feel obliged to act in the first place? >> >> >> At 01:16 PM 04/06/2000 -0400, you wrote: >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over >time. >> >The gland burns itself out. Endos know that and rush along the >inevitable >> >with RAI. I >> >> >> >> Shen >> Holy Macro! >> >> >> ------------------------------------------------------------------------ >> DON'T HATE YOUR RATE! >> Get a NextCard Visa, in 30 seconds! Get rates as low as >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. >> Apply NOW! >> http://click./1/2120/3/_/585824/_/955046434/ >> ------------------------------------------------------------------------ >> >> ------------------------------------- >> 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. >> ---------------------------------------- >> >> >> > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >http://click./1/2646/3/_/585824/_/955053112/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 , I guess I don't have any options but surgery. I am out of breath all of the time. And I can not walk across the room without feeling like I am having a heart attack. I am wringing wet with sweat 24 hours a day. At this point I just want to feel better no matter what I have to do. e RE: What I've Learned > > > > > >> Is it a proven fact that most Grave's patients end up hypothyroid over > >> time? And do you mean on a permanent basis? This is the first I have > >> heard it is inevitable. My new endo gave me these statistics: > >> > >> 50% of ATD patients go into remission. > >> Of the 50% that do not go into remission, or stay in remission, another > >50% > >> will ultimately go into remission with further meds. > >> > >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he > >> said " remission? " If the numbers above are close to correct, seems to > >me > >> I have a very good chance with the meds, since 100% of RAI patients will > >go > >> hypo. Plus, there's always hope for a different treatment around the > >corner. > >> > >> Speaking of alternative treatment, my new endo said they are now working > >on > >> ways to kill the antibodies that attack the thyroid - sounds closer to the > >> source, but still does not address the root of the problem -- why did our > >> autoimmune systems feel obliged to act in the first place? > >> > >> > >> At 01:16 PM 04/06/2000 -0400, you wrote: > >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over > >time. > >> >The gland burns itself out. Endos know that and rush along the > >inevitable > >> >with RAI. I > >> > >> > >> > >> Shen > >> Holy Macro! > >> > >> > >> ------------------------------------------------------------------------ > >> DON'T HATE YOUR RATE! > >> Get a NextCard Visa, in 30 seconds! Get rates as low as > >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. > >> Apply NOW! > >> http://click./1/2120/3/_/585824/_/955046434/ > >> ------------------------------------------------------------------------ > >> > >> ------------------------------------- > >> 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. > >> ---------------------------------------- > >> > >> > >> > > > > > >------------------------------------------------------------------------ > >Get a NextCard Visa, in 30 seconds! > >1. Fill in the brief application > >2. Receive approval decision within 30 seconds > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >Apply NOW! > >http://click./1/2646/3/_/585824/_/955053112/ > >------------------------------------------------------------------------ > > > >------------------------------------- > >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. > >---------------------------------------- > > > > > > > > Shen > Holy Macro! > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/3/_/585824/_/955054105/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 That was my next question. Are you facing surgery? Elaine RE: What I've Learned > > > > > >> Is it a proven fact that most Grave's patients end up hypothyroid over > >> time? And do you mean on a permanent basis? This is the first I have > >> heard it is inevitable. My new endo gave me these statistics: > >> > >> 50% of ATD patients go into remission. > >> Of the 50% that do not go into remission, or stay in remission, another > >50% > >> will ultimately go into remission with further meds. > >> > >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he > >> said " remission? " If the numbers above are close to correct, seems to > >me > >> I have a very good chance with the meds, since 100% of RAI patients will > >go > >> hypo. Plus, there's always hope for a different treatment around the > >corner. > >> > >> Speaking of alternative treatment, my new endo said they are now working > >on > >> ways to kill the antibodies that attack the thyroid - sounds closer to the > >> source, but still does not address the root of the problem -- why did our > >> autoimmune systems feel obliged to act in the first place? > >> > >> > >> At 01:16 PM 04/06/2000 -0400, you wrote: > >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over > >time. > >> >The gland burns itself out. Endos know that and rush along the > >inevitable > >> >with RAI. I > >> > >> > >> > >> Shen > >> Holy Macro! > >> > >> > >> ------------------------------------------------------------------------ > >> DON'T HATE YOUR RATE! > >> Get a NextCard Visa, in 30 seconds! Get rates as low as > >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. > >> Apply NOW! > >> http://click./1/2120/3/_/585824/_/955046434/ > >> ------------------------------------------------------------------------ > >> > >> ------------------------------------- > >> 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. > >> ---------------------------------------- > >> > >> > >> > > > > > >------------------------------------------------------------------------ > >Get a NextCard Visa, in 30 seconds! > >1. Fill in the brief application > >2. Receive approval decision within 30 seconds > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >Apply NOW! > >http://click./1/2646/3/_/585824/_/955053112/ > >------------------------------------------------------------------------ > > > >------------------------------------- > >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. > >---------------------------------------- > > > > > > > > Shen > Holy Macro! > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/3/_/585824/_/955054105/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 The latest book I checked out from the library (Could It Be My Thyroid? by Sheldon feld, thyroidologist) says ATDs bring about remission in 30% of patients, and 70% of those will become hyperthyroid again. I don't remember where I read the " inevitability of hypothyroidism " fact (I've read a lot about thyroid disease over the years). My Endo could've been my source. He's very pro-RAI, as it seems most Endos are. In this current book I'm reading, it says that in UNTREATED Graves, ALL go hypo within 10/20 years. I was probably undiagnosed/untreated for 5 years. Anyone else think they had it long before they were diagnosed or treated? Anyway, years in and out of remission must be cumulatively taxing on the thyroid gland. So even treated, it makes sense that most or even all would go hypo over time. RAI made sense to me, given that there was no treatment to kill the antibodies. That would be a godsend, for Graves and the many other much more debilitating autoimmune diseases. Negatives of RAI I've read about: possible exacerbation of existing eye disease and thyroid storm. Those are pretty scary, but so are the small chances of agranulocytosis and liver problems with ATDs. I don't hold out too much hope for alternative treatments of Graves. Thyroid disease doesn't rank up there with AIDS or cancer for research dollars. Also, it seems many in the medical community are satisfied with the efficacy of the current treatments. I was born susceptible to Graves Disease. My mom is hypothyroid, as is my sister, and I'm fairly certain my grandmother had undiagnosed thyroid disease. Mine was brought on by extreme life stressors. Autoimmune conditions are very sensitive to stress. I've always been an emotionally-fragile person and a worrier. Not a good combination. Oh, BTW, this book I'm reading says smoking WORSENS the course of Graves Disease. If you smoke, quit. Easy for me to say since I've never smoked! Think of all the poisons in cigarette smoke! What about the effect of second-hand smoke? Growing up, my mom, dad, grandmother and grandfather ALL smoked, and I lived with them. Renée Mom to , 10, and Sierra Dawn, 08/22/99 http://cscoggin.home.netcom.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 >>Are you saying you are not taking synthroid or an equivalent now? >> >>Elaine No, not at all. I am on 125 mcg of levoxyl and going to a new Endo the end of this month since I'm hypo again. My old Endo didn't listen to me when I told him I thought I needed a higher dosage of levoxyl. He's the sort of Endo that thinks a TSH of 4 is normal. Sure, according to the lab values, but most I've read said a woman's TSH should be around 2.5. Anyway, I'm feeling awful: tired, constipated, high BP, low pulse, depressed, can't concentrate, etc., I went to the YMCA yesterday for a fitness test and they wouldn't let me finish the test because of my BP. My BP always goes up when I'm hypo. Renée Mom to , 10, and Sierra Dawn, 08/22/99 http://cscoggin.home.netcom.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 e, I also read your post on the BB...and one of the responses was for you to get a second opinion. If I were in your shoes I would DEFINATELY get a second opinion!!! Also, have they tried you on PTU? I have also read that people have had different experiences using PTU and a beta blocker than they did on TAP and a beta blocker...have you also been using a beta blocker? *IF* surgery IS the only option for you, then you need to make sure you interview the surgeon..find out how many operations he has done, how many he/she does in a month etc....I am sure others can/will help you with other questions. But please make sure that your surgeon is skilled in what he does. Good luck. *HUGZ* Jody ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 e, I just read your post about your numbers dropping drastically once you got your lab results and how your dr. *assumed* that the ATD's were not working without looking at them...please please please...do yourself a favor and at least consult with a new endo. Jody ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 e: Your case sounds so severe. Have you gotten a second opinion? At 03:27 PM 04/06/2000 -0500, you wrote: >, > >Regarding your statistics, my doctor swears that my high level of thyroid >can not be controlled with ATDs. I took Tapazole for 3 weeks and my thryoid >levels keep going up. My doctor told me that by continuing ATD's I am >endangering my health by putting stress on my heart and increasing my >chances of developing eye problems. Basicly, he told me that I did not have >the " time " to waste getting more effective treatment. I am not a candidate >for Radioactive Iodine either, being that I can not do without medication >for 6-8 weeks prior to Radioactive Iodine due to my symptoms. > >e > > > > RE: What I've Learned > > >> Is it a proven fact that most Grave's patients end up hypothyroid over >> time? And do you mean on a permanent basis? This is the first I have >> heard it is inevitable. My new endo gave me these statistics: >> >> 50% of ATD patients go into remission. >> Of the 50% that do not go into remission, or stay in remission, another >50% >> will ultimately go into remission with further meds. >> >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he >> said " remission? " If the numbers above are close to correct, seems to >me >> I have a very good chance with the meds, since 100% of RAI patients will >go >> hypo. Plus, there's always hope for a different treatment around the >corner. >> >> Speaking of alternative treatment, my new endo said they are now working >on >> ways to kill the antibodies that attack the thyroid - sounds closer to the >> source, but still does not address the root of the problem -- why did our >> autoimmune systems feel obliged to act in the first place? >> >> >> At 01:16 PM 04/06/2000 -0400, you wrote: >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over >time. >> >The gland burns itself out. Endos know that and rush along the >inevitable >> >with RAI. I >> >> >> >> Shen >> Holy Macro! >> >> >> ------------------------------------------------------------------------ >> DON'T HATE YOUR RATE! >> Get a NextCard Visa, in 30 seconds! Get rates as low as >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. >> Apply NOW! >> http://click./1/2120/3/_/585824/_/955046434/ >> ------------------------------------------------------------------------ >> >> ------------------------------------- >> 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. >> ---------------------------------------- >> >> >> > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >http://click./1/2646/3/_/585824/_/955053112/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 , You are not going to believe this. I called to find out my lab results from yesterday . Remember, yesterday, when the doctor told me that ATD's would do no good and that I should schedule surgery immediately. Well, the nurse called me back finally and said that my thyroid levels had dropped dramatically. She then called my endo on his cell phone and he said in light of the lab results I should continue my ATD's (I was switched to PTU because I was allergic to Tapazole). They told me that my T-3 level went from 867 to 390 and my T-3 level went from 34 to 8.8. I was only only the Tapazole for a couple weeks. Does that mean that the PTU will work on me? I was somewhat suspicious when the doctor told me that just by looking at me he could tell that my thyroid levels had not gotten any better. I told him I would like to get the lab results before I made any decisions. Can you believe that? e RE: What I've Learned > > > > > >> Is it a proven fact that most Grave's patients end up hypothyroid over > >> time? And do you mean on a permanent basis? This is the first I have > >> heard it is inevitable. My new endo gave me these statistics: > >> > >> 50% of ATD patients go into remission. > >> Of the 50% that do not go into remission, or stay in remission, another > >50% > >> will ultimately go into remission with further meds. > >> > >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when he > >> said " remission? " If the numbers above are close to correct, seems to > >me > >> I have a very good chance with the meds, since 100% of RAI patients will > >go > >> hypo. Plus, there's always hope for a different treatment around the > >corner. > >> > >> Speaking of alternative treatment, my new endo said they are now working > >on > >> ways to kill the antibodies that attack the thyroid - sounds closer to the > >> source, but still does not address the root of the problem -- why did our > >> autoimmune systems feel obliged to act in the first place? > >> > >> > >> At 01:16 PM 04/06/2000 -0400, you wrote: > >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over > >time. > >> >The gland burns itself out. Endos know that and rush along the > >inevitable > >> >with RAI. I > >> > >> > >> > >> Shen > >> Holy Macro! > >> > >> > >> ------------------------------------------------------------------------ > >> DON'T HATE YOUR RATE! > >> Get a NextCard Visa, in 30 seconds! Get rates as low as > >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. > >> Apply NOW! > >> http://click./1/2120/3/_/585824/_/955046434/ > >> ------------------------------------------------------------------------ > >> > >> ------------------------------------- > >> 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. > >> ---------------------------------------- > >> > >> > >> > > > > > >------------------------------------------------------------------------ > >Get a NextCard Visa, in 30 seconds! > >1. Fill in the brief application > >2. Receive approval decision within 30 seconds > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >Apply NOW! > >http://click./1/2646/3/_/585824/_/955053112/ > >------------------------------------------------------------------------ > > > >------------------------------------- > >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. > >---------------------------------------- > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/3/_/585824/_/955061818/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 , You are not going to believe this. I called to find out my lab results from yesterday . Remember, yesterday, when the doctor told me that ATD's would do no good and that I should schedule surgery immediately. Well, the nurse called me back finally and said that my thyroid levels had dropped dramatically. She then called my endo on his cell phone and he said in light of the lab results I should continue my ATD's (I was switched to PTU because I was allergic to Tapazole). They told me that my T-3 level went from 867 to 390 and my T-3 level went from 34 to 8.8. I was only only the Tapazole for a couple weeks. Does that mean that the PTU will work on me? I was somewhat suspicious when the doctor told me that just by looking at me he could tell that my thyroid levels had not gotten any better. I told him I would like to get the lab results before I made any decisions. Can you believe that? e Re: What I've Learned > Hi e, maybe your doctor misdiagnosed you. There might be > something else causing you to be hyperthyroid. Most of us here have not > experienced elevates number while taking ATD. > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/975/3/_/585824/_/955061172/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 >You are not going to believe this. I called to find out my lab results from yesterday . Remember, yesterday, when the doctor told me that ATD's would do no good and that I should schedule surgery immediately. Well, the nurse called me back finally and said that my thyroid levels had dropped dramatically. Excellent!! Darn these doctors and their snooty attitudes. The blood tells all. I was originally prescribed Tapazole, which gave me hives, and then put on PTU. It's been working very well. I still have a few symptoms, but they're dramatically reduced. Guess it just lingers for a while... Great lab results! I'm so pleased for you. ~kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Thank God. What great news. I hope you continue to have good results with the PTU. Hopefully you will be doing bloodwork in a month to check progress. Also hopefully your doctor will be more cautious with opinions from now on. I'm very glad for you, and I think that you will soon actually feel improvement. At 06:07 PM 04/06/2000 -0500, you wrote: >, > >You are not going to believe this. I called to find out my lab results from >yesterday . Remember, yesterday, when the doctor told me that ATD's would do >no good and that I should schedule surgery immediately. Well, the nurse >called me back finally and said that my thyroid levels had dropped >dramatically. She then called my endo on his cell phone and he said in >light of the lab results I should continue my ATD's (I was switched to PTU >because I was allergic to Tapazole). They told me that my T-3 level went >from 867 to 390 and my T-3 level went from 34 to 8.8. I was only only the >Tapazole for a couple weeks. Does that mean that the PTU will work on me? > >I was somewhat suspicious when the doctor told me that just by looking at me >he could tell that my thyroid levels had not gotten any better. I told him >I would like to get the lab results before I made any decisions. > >Can you believe that? > > >e > RE: What I've Learned >> > >> > >> >> Is it a proven fact that most Grave's patients end up hypothyroid over >> >> time? And do you mean on a permanent basis? This is the first I have >> >> heard it is inevitable. My new endo gave me these statistics: >> >> >> >> 50% of ATD patients go into remission. >> >> Of the 50% that do not go into remission, or stay in remission, another >> >50% >> >> will ultimately go into remission with further meds. >> >> >> >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when >he >> >> said " remission? " If the numbers above are close to correct, seems >to >> >me >> >> I have a very good chance with the meds, since 100% of RAI patients >will >> >go >> >> hypo. Plus, there's always hope for a different treatment around the >> >corner. >> >> >> >> Speaking of alternative treatment, my new endo said they are now >working >> >on >> >> ways to kill the antibodies that attack the thyroid - sounds closer to >the >> >> source, but still does not address the root of the problem -- why did >our >> >> autoimmune systems feel obliged to act in the first place? >> >> >> >> >> >> At 01:16 PM 04/06/2000 -0400, you wrote: >> >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over >> >time. >> >> >The gland burns itself out. Endos know that and rush along the >> >inevitable >> >> >with RAI. I >> >> >> >> >> >> >> >> Shen >> >> Holy Macro! >> >> >> >> >> >>> ------------------------------------------------------------------------ >> >> DON'T HATE YOUR RATE! >> >> Get a NextCard Visa, in 30 seconds! Get rates as low as >> >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. >> >> Apply NOW! >> >> http://click./1/2120/3/_/585824/_/955046434/ >> >>> ------------------------------------------------------------------------ >> >> >> >> ------------------------------------- >> >> 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. >> >> ---------------------------------------- >> >> >> >> >> >> >> > >> > >> >------------------------------------------------------------------------ >> >Get a NextCard Visa, in 30 seconds! >> >1. Fill in the brief application >> >2. Receive approval decision within 30 seconds >> >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >> >Apply NOW! >> >http://click./1/2646/3/_/585824/_/955053112/ >> >------------------------------------------------------------------------ >> > >> >------------------------------------- >> >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. >> >---------------------------------------- >> > >> > >> >> ------------------------------------------------------------------------ >> PERFORM CPR ON YOUR APR! >> Get a NextCard Visa, in 30 seconds! Get rates as low as >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. >> Apply NOW! >> http://click./1/2121/3/_/585824/_/955061818/ >> ------------------------------------------------------------------------ >> >> ------------------------------------- >> 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. >> ---------------------------------------- >> >> >> > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click./1/2121/3/_/585824/_/955062709/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 I have also read that Graves people go hypo eventually. But if that is so why have we never heard of one? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Hi e, maybe your doctor misdiagnosed you. There might be something else causing you to be hyperthyroid. Most of us here have not experienced elevates number while taking ATD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 I highly recommend that you seek another endocrinologist. Elaine RE: What I've Learned > > > > > > > > >> Is it a proven fact that most Grave's patients end up hypothyroid over > > >> time? And do you mean on a permanent basis? This is the first I have > > >> heard it is inevitable. My new endo gave me these statistics: > > >> > > >> 50% of ATD patients go into remission. > > >> Of the 50% that do not go into remission, or stay in remission, another > > >50% > > >> will ultimately go into remission with further meds. > > >> > > >> Did I get the numbers wrong? Am I supposed to read " hypothyroid " when > he > > >> said " remission? " If the numbers above are close to correct, seems > to > > >me > > >> I have a very good chance with the meds, since 100% of RAI patients > will > > >go > > >> hypo. Plus, there's always hope for a different treatment around the > > >corner. > > >> > > >> Speaking of alternative treatment, my new endo said they are now > working > > >on > > >> ways to kill the antibodies that attack the thyroid - sounds closer to > the > > >> source, but still does not address the root of the problem -- why did > our > > >> autoimmune systems feel obliged to act in the first place? > > >> > > >> > > >> At 01:16 PM 04/06/2000 -0400, you wrote: > > >> >Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over > > >time. > > >> >The gland burns itself out. Endos know that and rush along the > > >inevitable > > >> >with RAI. I > > >> > > >> > > >> > > >> Shen > > >> Holy Macro! > > >> > > >> > > > >> ------------------------------------------------------------------------ > > >> DON'T HATE YOUR RATE! > > >> Get a NextCard Visa, in 30 seconds! Get rates as low as > > >> 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > >> Apply NOW! > > >> http://click./1/2120/3/_/585824/_/955046434/ > > > >> ------------------------------------------------------------------------ > > >> > > >> ------------------------------------- > > >> 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. > > >> ---------------------------------------- > > >> > > >> > > >> > > > > > > > > >------------------------------------------------------------------------ > > >Get a NextCard Visa, in 30 seconds! > > >1. Fill in the brief application > > >2. Receive approval decision within 30 seconds > > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > > >Apply NOW! > > >http://click./1/2646/3/_/585824/_/955053112/ > > >------------------------------------------------------------------------ > > > > > >------------------------------------- > > >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. > > >---------------------------------------- > > > > > > > > > > ------------------------------------------------------------------------ > > PERFORM CPR ON YOUR APR! > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > http://click./1/2121/3/_/585824/_/955061818/ > > ------------------------------------------------------------------------ > > > > ------------------------------------- > > 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. > > ---------------------------------------- > > > > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/3/_/585824/_/955062709/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Hi - I had a TSH of 4.0 (5 years post-RAI) when I was 29. My cholesterol was over 230 (it had never before been above 150 before RAI). I pointed out that high cholesterol was a symptom of hypothyroidism and the doctors said that it was impossible that that was my problem because my TSH was in the " normal range " . So they told me I had to watch my cholesterol for the rest of my life and put me on a low cholesterol diet. I stayed on it for a year. I went back and my cholesterol levels were the same. My husband is a doctor so he prescribed me 50 mcg of levothyroxine increased slowly over 2 months. I switched doctors and got retested. My TSH was 2.5 and my cholesterol was 125. I'm now 37 my TSH hasn't been above 2.5 and my cholesterol has never been above150 since then and I eat what I want (I've always exercised even when my cholesterol was 230+). If you ask me, they really don't know what they're doing. Take care, Utecht wrote: > >>Are you saying you are not taking synthroid or an equivalent now? > >> > >>Elaine > > No, not at all. I am on 125 mcg of levoxyl and going to a new Endo the end > of this month since I'm hypo again. My old Endo didn't listen to me when I > told him I thought I needed a higher dosage of levoxyl. He's the sort of > Endo that thinks a TSH of 4 is normal. Sure, according to the lab values, > but most I've read said a woman's TSH should be around 2.5. Anyway, I'm > feeling awful: tired, constipated, high BP, low pulse, depressed, can't > concentrate, etc., I went to the YMCA yesterday for a fitness test and they > wouldn't let me finish the test because of my BP. My BP always goes up when > I'm hypo. > > Renée > Mom to , 10, > and Sierra Dawn, 08/22/99 > http://cscoggin.home.netcom.com > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/3/_/585824/_/955057992/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Hi - The burnout is not inevitable depending upon what you think inevitable is. I know of people on ATDs (when they're given the chance) for 20 years (happens in Europe frequently). This would not be possible if their glands were burned out. But it's a great way to get us resigned to having RAI here in the US because it does happen some of the time ( dueling stimulating + blocking antibodies?). Me, if I had it to do over again, I'd have some thyroid function as long as possible. My thyroid completely died 6 years post-RAI (wasn't supposed to) and I'm completely reliant upon exogenous thyroid hormone for my well being. It didn't work so great for me since I've been kept hypothyroid (relying upon standard tests) for almost all the years I've been post-RAI. If I had it to do over again, I wouldn't have had RAI especially since they freely admit that they don't understand everything about thyroid function. And then they don't replace everything either. I've gone over it again and again and, being a biologist, it doesn't make sense to me. I'd be lambasted for conclusions with uncontrolled variables as have happened in the medical profession. Is this real science? I don't think so. But does it work sometimes when the accepted tests are looked at? It appears so. But now they're finding that TSH can't be used when additional T3 is administered. It muddles up the test. For example, my TSH is 0.01 but my T3 and T4 levels are now mid-normal. Something's not right with the TSH test in this regard but they don't know what it is yet. And they tell doctors this at seminars too! We just don't know about it yet. This lack of knowledge makes me question everything. You really can't trust anything you specifically read about this disease because it varies so much in individuals. And there are so many variables that you cannot control. I'd rather be 10/20 years down the line (I would've been in my mid 30s and 40s) with some thyroid function, than 30 years old with none at all and completely reliant upon meds. That doesn't work well with reproductive aged women, in my opinion. As far as research dollars, there aren't many available. BUT the human genome project is almost completed and you can't tell me that they aren't going to be working hard on terrible diseases like systemic lupus and scleroderma which have the same processes going on as we do. They figure out how to fix those and we will go right along with them. Now! I have to say that I'm tired of the fatalistic view about this disease. Maybe it's too late for those of us that have opted for permanent treatments but it's not for those that haven't. Take care, Utecht wrote: > Meds or no meds, RAI or not, MOST Graves patients go hypothyroid over time. > The gland burns itself out. Endos know that and rush along the inevitable > with RAI. I'm new to the list and haven't been around long enough to hear > all of the supposed long term effects of RAI. Would be interested in > finding out, since I had it done a little over two years ago. For me, after > taking meds for 18 months and then coming out of remission, I didn't want to > bother with the meds and then have a roller coaster ride of coming in and > out of remission until I finally went hypo. Any other thoughts on the > topic? > > Renée > Mom to , 10, > and Sierra Dawn, 08/22/99 > http://cscoggin.home.netcom.com > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/3/_/585824/_/955043152/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 , I liked what you said regarding the TSH...and didn't know that it would not be accurate with the T3 supplement. For me though, whose drs. have done nothing BUT a TSH for 3 years and relying on that to tell them how I am suppose to feel, I HATE that test because it doesn't indicate the THYROID...at least in my opinion. A test on the pituatary to determine what the thyroid is doing ALL of the time just doesn't make sense. As an indicator that something is omiss with the thyroid it is a good place to start but not to depend on. I have read where the TSH can lag behind, or be slow to wake up, or slow to catch up when taking TRH, all kinds of reasons why when we feel like crap and the TSH is within normal range and a dr. depends on the TSH and leaves us feeling like crap...I'm not sure I'm making sense...I hope you know what I am trying to say. I am moving back into hyper again and boy I had forgotten how nasty these feelings can be. I went in for a BP check yesterday, nurse took it, it was 190/100 NOT GOOD...I also told her to please tell the dr. I was having hyper symptoms again, heart palps, insomnia (no matter I am exhausted) trouble concentrating, hair is falling out heavily now, muscle weakness...she wrote it all down...I also didn't bring up doing any blood test (my dr. hates when I tell him to do them, especially since I see a new endo in 2 months)but I can't go on like this for 2 more months...so what I did ask her to ask him was could we try alternating my TRH between .075 (not enough) and .088 (too much). He called me 2 hours later and said he had just ordered a full panel... FINALLY...I have only been asking him for this for 4 months. Anyhow, blood will be done on Monday. His first reaction was he wanted to increase my BP meds...I told him not right now because I felt my BP was rising because of all the hyper symptoms...so now I get the blood tests. I can't wait to see new endo in June. Wish it weren't so far away. Now that I have gotten off the beaten track of where I started I close. TTYL. *HUGZ* to all. Jody ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 e, What scared me about your dr. is the fact he was telling you surgery *immediately* just by looking at your appearance and NOT looking at you lab work. It just seemed to me that he made a snap decision, possibly based on what HE would find the easiest way of treating YOU... not what treatment YOU would prefer. If my new endo (when I see her in June) did that to me I would walk out and never look back. But that is just my opinion. Seems though that maybe a second opinion, if available to you couldn't hurt. Take care, Jody ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Jody, Wednesday I was told that I needed surgery immediately by my endo. When I called back yesterday for the lab results they told me that my T-3 had dropped from 867 to 390 (from 2 weeks on Tapazole). The nurse then called the doctor on his cell phone and he said that since I was apparently improving that I was to start taking PTU, since I was allergic to the Tapazole. I can't believe that the doctor based his recommendation for surgery solely based on my progress by looking at my appearance (My hands and legs shake pretty badily) . So since yesterday afternoon surgery is off for now. My endo did give me a talk about the " dangerous side effects from continuing ATDs, though " . I told him that I would take my chances. I wonder if PTU works the same way as Tapazole. I get the impression that itchy skin and rashes are common with Tapazole. Although, there must be some reason why the doctor tries it first before the PTU. Right now I am just trying to recover from being scared to death about having surgery. e Re: What I've Learned > e, > I also read your post on the BB...and one of the responses was for you to > get a second opinion. If I were in your shoes I would DEFINATELY get a > second opinion!!! Also, have they tried you on PTU? I have also read that > people have had different experiences using PTU and a beta blocker than they > did on TAP and a beta blocker...have you also been using a beta blocker? > > *IF* surgery IS the only option for you, then you need to make sure you > interview the surgeon..find out how many operations he has done, how many > he/she does in a month etc....I am sure others can/will help you with other > questions. But please make sure that your surgeon is skilled in what he > does. > > Good luck. > *HUGZ* > Jody > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/936/3/_/585824/_/955071863/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 >>I wonder if PTU works the same way as Tapazole. I get the impression that itchy skin and rashes are common with Tapazole. Although, there must be some reason why the doctor tries it first before the PTU. the impression I got from my doctor (who is not an endo), was that PTU takes a bit longer to work. The Tapazole's a bit more powerful. Anyone else hear this? Kari Quote Link to comment Share on other sites More sharing options...
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