Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Patti, For the first few 5 or so years, I told everyone that RAI was great and that I felt great. I didn't actually think this but I felt ok and my doctor dismissed all my complaints saying they weren't thyroid related. The worst part was my legs because they quickly started looking all swollen and they used to be decent legs. I remember my kids telling me to quit doing step aerobics thinking that was the cause. I'm pretty stubborn though so when I figured out that I was never going to look as good or feel as good as I used to, I tried blaming it on other things. When I finally figured out, 10 years after RAI, that I was hypothyroid despite my labs and then started on Armour instead of just levothyroxine, I started feeling lots better. Still, though 12 years after RAI I can't get the dose right and being hypothyroid causes me not to produce estrogen, testosterone, progesterone and all the thinks that spark up life. And trying to get ALL of these hormones right has really been a nightmare. I feel like many of these factors have conspired to age me. I also developed an atrophied pancreas confirmed on cat scan, that my doc thinks is a result of the RAI. Granted, I'm older than I was when I had RAI, but I feel matronly now. I miss my old self. I was always athletic and energetic. I'm not trying to compare my experiences with RAI to the phantom pain of an amputated limb or anything that profound, but I've spent 12 years feeling like something is missing. I keep adding supplements, adjusting doses of T4, T3, even glandular pituitary hormones, 8 different estrogen compounded combos. And I'll keep on trying til I get something right, but considering the mild hyper symptoms I had before RAI this loss of the quality of life is disconcerting to me. We all have different experiences though. For someone who was very hyperthyroid and suffering, the things I mention may seem pretty minor. Good luck, Elaine PS, Redhen and Jeannette did a similar satisfaction survey around 5 years ago with a fairly large population sample. Hopefully they'll pop in here with the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Patti, For the first few 5 or so years, I told everyone that RAI was great and that I felt great. I didn't actually think this but I felt ok and my doctor dismissed all my complaints saying they weren't thyroid related. The worst part was my legs because they quickly started looking all swollen and they used to be decent legs. I remember my kids telling me to quit doing step aerobics thinking that was the cause. I'm pretty stubborn though so when I figured out that I was never going to look as good or feel as good as I used to, I tried blaming it on other things. When I finally figured out, 10 years after RAI, that I was hypothyroid despite my labs and then started on Armour instead of just levothyroxine, I started feeling lots better. Still, though 12 years after RAI I can't get the dose right and being hypothyroid causes me not to produce estrogen, testosterone, progesterone and all the thinks that spark up life. And trying to get ALL of these hormones right has really been a nightmare. I feel like many of these factors have conspired to age me. I also developed an atrophied pancreas confirmed on cat scan, that my doc thinks is a result of the RAI. Granted, I'm older than I was when I had RAI, but I feel matronly now. I miss my old self. I was always athletic and energetic. I'm not trying to compare my experiences with RAI to the phantom pain of an amputated limb or anything that profound, but I've spent 12 years feeling like something is missing. I keep adding supplements, adjusting doses of T4, T3, even glandular pituitary hormones, 8 different estrogen compounded combos. And I'll keep on trying til I get something right, but considering the mild hyper symptoms I had before RAI this loss of the quality of life is disconcerting to me. We all have different experiences though. For someone who was very hyperthyroid and suffering, the things I mention may seem pretty minor. Good luck, Elaine PS, Redhen and Jeannette did a similar satisfaction survey around 5 years ago with a fairly large population sample. Hopefully they'll pop in here with the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Patti, I just wanted to add my voice to those that have already said - thanks for sharing your experience. I can understand how you found it intimidating here to tell your good experience of RAI and think it is great that you pressed the send button. I really don't want to spook you by asking this question, as I am DELIGHTED to hear that you are feeling better but I am interested to know if there are other members here who did well on RAI for a few years and then became unhappy with the results later? I think my question runs the risk (especially on email where you can't see my facial expressions) of sounding like a " just you wait and see " thing on my part and I really hope you don't take it that way... it just makes sense from what we know about RAI, that the general pattern to expect might be - initial improvement as Hyper symptoms recede, followed by developing hypothyroidism and a battle with replacement meds/ worsened eye disease. Thanks for your thoughts DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: Holly >Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST) > > > > > very little consideration is given to ATDs or surgery there. Because of >that > > perceived bias, I wonder where _they_ got the 15% figure from. It seems >that > >I too, would be interested in knowing where they got that figure. From my >own experience (working in the computer industry), I've found that people >that have a problem with something tend to be a lot more vocal about >something than the people NOT having a problem. ie: No one comes to me and >says " the network is running GREAT today.. thanks! " . I used to get >people constantly coming to me with their complaints about the network. >Overall, the complaintants were maybe 10 people out of 200 -- but they >were the only ones coming. The 190 who didn't have any problems were >mostly silent. > >I'll also admit that sharing my good (so far anyway) experience with RAI >was a bit intimidating on this list -- most of the members who post seem >so vehemently opposed to it that I kept sitting here wondering if I should >hit the " send " button or not. It's entirely possible that the 15% number >is correct, and that people with good experiences just aren't on the >support email lists, or are intimidated into keeping quiet. Of course, >it's also possible that the 15% number is utter garbage. > >Maybe I'll make this my next " spare time project " -- figure out where they >got that 15% number from. > >We've got 282 members here -- am I the ONLY one that had a pretty good >experience w/ RAI? Anyone else care to speak up? > >--patti > >*~*~*~*~* >Patti Spicer patti@... > > > " The silence is as important as the noise. What gets left out is >as important as what gets included " >--Sara Lawrence-Lightfoot, author of " I've Known Rivers " > >http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and >more! > > > >------------------------------------- >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 March 7, 2002 Report Share Posted March 7, 2002 Hi Patti, I just wanted to add my voice to those that have already said - thanks for sharing your experience. I can understand how you found it intimidating here to tell your good experience of RAI and think it is great that you pressed the send button. I really don't want to spook you by asking this question, as I am DELIGHTED to hear that you are feeling better but I am interested to know if there are other members here who did well on RAI for a few years and then became unhappy with the results later? I think my question runs the risk (especially on email where you can't see my facial expressions) of sounding like a " just you wait and see " thing on my part and I really hope you don't take it that way... it just makes sense from what we know about RAI, that the general pattern to expect might be - initial improvement as Hyper symptoms recede, followed by developing hypothyroidism and a battle with replacement meds/ worsened eye disease. Thanks for your thoughts DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: Holly >Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST) > > > > > very little consideration is given to ATDs or surgery there. Because of >that > > perceived bias, I wonder where _they_ got the 15% figure from. It seems >that > >I too, would be interested in knowing where they got that figure. From my >own experience (working in the computer industry), I've found that people >that have a problem with something tend to be a lot more vocal about >something than the people NOT having a problem. ie: No one comes to me and >says " the network is running GREAT today.. thanks! " . I used to get >people constantly coming to me with their complaints about the network. >Overall, the complaintants were maybe 10 people out of 200 -- but they >were the only ones coming. The 190 who didn't have any problems were >mostly silent. > >I'll also admit that sharing my good (so far anyway) experience with RAI >was a bit intimidating on this list -- most of the members who post seem >so vehemently opposed to it that I kept sitting here wondering if I should >hit the " send " button or not. It's entirely possible that the 15% number >is correct, and that people with good experiences just aren't on the >support email lists, or are intimidated into keeping quiet. Of course, >it's also possible that the 15% number is utter garbage. > >Maybe I'll make this my next " spare time project " -- figure out where they >got that 15% number from. > >We've got 282 members here -- am I the ONLY one that had a pretty good >experience w/ RAI? Anyone else care to speak up? > >--patti > >*~*~*~*~* >Patti Spicer patti@... > > > " The silence is as important as the noise. What gets left out is >as important as what gets included " >--Sara Lawrence-Lightfoot, author of " I've Known Rivers " > >http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and >more! > > > >------------------------------------- >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 March 7, 2002 Report Share Posted March 7, 2002 Hi Patti, I just wanted to add my voice to those that have already said - thanks for sharing your experience. I can understand how you found it intimidating here to tell your good experience of RAI and think it is great that you pressed the send button. I really don't want to spook you by asking this question, as I am DELIGHTED to hear that you are feeling better but I am interested to know if there are other members here who did well on RAI for a few years and then became unhappy with the results later? I think my question runs the risk (especially on email where you can't see my facial expressions) of sounding like a " just you wait and see " thing on my part and I really hope you don't take it that way... it just makes sense from what we know about RAI, that the general pattern to expect might be - initial improvement as Hyper symptoms recede, followed by developing hypothyroidism and a battle with replacement meds/ worsened eye disease. Thanks for your thoughts DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: Holly >Date: Tue, 5 Mar 2002 10:24:42 -0500 (EST) > > > > > very little consideration is given to ATDs or surgery there. Because of >that > > perceived bias, I wonder where _they_ got the 15% figure from. It seems >that > >I too, would be interested in knowing where they got that figure. From my >own experience (working in the computer industry), I've found that people >that have a problem with something tend to be a lot more vocal about >something than the people NOT having a problem. ie: No one comes to me and >says " the network is running GREAT today.. thanks! " . I used to get >people constantly coming to me with their complaints about the network. >Overall, the complaintants were maybe 10 people out of 200 -- but they >were the only ones coming. The 190 who didn't have any problems were >mostly silent. > >I'll also admit that sharing my good (so far anyway) experience with RAI >was a bit intimidating on this list -- most of the members who post seem >so vehemently opposed to it that I kept sitting here wondering if I should >hit the " send " button or not. It's entirely possible that the 15% number >is correct, and that people with good experiences just aren't on the >support email lists, or are intimidated into keeping quiet. Of course, >it's also possible that the 15% number is utter garbage. > >Maybe I'll make this my next " spare time project " -- figure out where they >got that 15% number from. > >We've got 282 members here -- am I the ONLY one that had a pretty good >experience w/ RAI? Anyone else care to speak up? > >--patti > >*~*~*~*~* >Patti Spicer patti@... > > > " The silence is as important as the noise. What gets left out is >as important as what gets included " >--Sara Lawrence-Lightfoot, author of " I've Known Rivers " > >http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and >more! > > > >------------------------------------- >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 March 7, 2002 Report Share Posted March 7, 2002 Hi Terry, The sex hormone loss is related to both. RAI does affect the genital organs since it's primarily excreted through that route. Cells at the path of RAI get mutated or destroyed. Since I can't prove that my ovaries organs were affected, although I had an unusual ultraound, I'll go with the other option: the resultant hypothyroidism; It slows down all bodily functions. That's why hypo kids don't grow, height wise. I recently had growth hormone, dhea, prolactin and all those levels tested. They're all low, which is typically the case in hypoT. Digestive enzymes are low too so malabsorption can occur without supplements. If I could find an estrogen combo that didn't raise my blood pressure after a few months, it wouldn't be such a big deal. DHEA and pregnenolone cause problems too. Hormone wise, hypoT can cause also strange problems in children, like precocious puberty. Thyroid hormone affects every other organ and replacement hormone needs such fine tuning. So I'll keep working on it. And any ideas or suggestions are appreciated, even designer drugs. Keep well, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Terry, The sex hormone loss is related to both. RAI does affect the genital organs since it's primarily excreted through that route. Cells at the path of RAI get mutated or destroyed. Since I can't prove that my ovaries organs were affected, although I had an unusual ultraound, I'll go with the other option: the resultant hypothyroidism; It slows down all bodily functions. That's why hypo kids don't grow, height wise. I recently had growth hormone, dhea, prolactin and all those levels tested. They're all low, which is typically the case in hypoT. Digestive enzymes are low too so malabsorption can occur without supplements. If I could find an estrogen combo that didn't raise my blood pressure after a few months, it wouldn't be such a big deal. DHEA and pregnenolone cause problems too. Hormone wise, hypoT can cause also strange problems in children, like precocious puberty. Thyroid hormone affects every other organ and replacement hormone needs such fine tuning. So I'll keep working on it. And any ideas or suggestions are appreciated, even designer drugs. Keep well, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Terry, The sex hormone loss is related to both. RAI does affect the genital organs since it's primarily excreted through that route. Cells at the path of RAI get mutated or destroyed. Since I can't prove that my ovaries organs were affected, although I had an unusual ultraound, I'll go with the other option: the resultant hypothyroidism; It slows down all bodily functions. That's why hypo kids don't grow, height wise. I recently had growth hormone, dhea, prolactin and all those levels tested. They're all low, which is typically the case in hypoT. Digestive enzymes are low too so malabsorption can occur without supplements. If I could find an estrogen combo that didn't raise my blood pressure after a few months, it wouldn't be such a big deal. DHEA and pregnenolone cause problems too. Hormone wise, hypoT can cause also strange problems in children, like precocious puberty. Thyroid hormone affects every other organ and replacement hormone needs such fine tuning. So I'll keep working on it. And any ideas or suggestions are appreciated, even designer drugs. Keep well, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > I really don't want to spook you by asking this question, as I am DELIGHTED > to hear that you are feeling better but I am interested to know if there are > other members here who did well on RAI for a few years and then became > unhappy with the results later? In the interest of trying to figure that out, I've posted two polls. One for people who feel their RAI experience was GOOD, and one for those who feel they had a bad experience. The vote is anonymous, but if everyone votes, it should give us a snapshot of how many think RAI was good and how long it's been -- and also how many thought RAI was bad for them and how long it's been. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > I really don't want to spook you by asking this question, as I am DELIGHTED > to hear that you are feeling better but I am interested to know if there are > other members here who did well on RAI for a few years and then became > unhappy with the results later? In the interest of trying to figure that out, I've posted two polls. One for people who feel their RAI experience was GOOD, and one for those who feel they had a bad experience. The vote is anonymous, but if everyone votes, it should give us a snapshot of how many think RAI was good and how long it's been -- and also how many thought RAI was bad for them and how long it's been. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Since those of us who haven't had RAI can't see the results - you have to vote to see the results, and we don't want to skew them in any way - please post the results to the list. I hope people speak up. This could be very helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Since those of us who haven't had RAI can't see the results - you have to vote to see the results, and we don't want to skew them in any way - please post the results to the list. I hope people speak up. This could be very helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Since those of us who haven't had RAI can't see the results - you have to vote to see the results, and we don't want to skew them in any way - please post the results to the list. I hope people speak up. This could be very helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Is there no way to see the results of the polls without actually voting ? I have not had RAI but I would like to see what others experiences are. Unfortunately the Yahoo screen says that the results will not be revealed until after voting. Anyone ? Kate. Re: To Patti > I really don't want to spook you by asking this question, as I am DELIGHTED > to hear that you are feeling better but I am interested to know if there are > other members here who did well on RAI for a few years and then became > unhappy with the results later? In the interest of trying to figure that out, I've posted two polls. One for people who feel their RAI experience was GOOD, and one for those who feel they had a bad experience. The vote is anonymous, but if everyone votes, it should give us a snapshot of how many think RAI was good and how long it's been -- and also how many thought RAI was bad for them and how long it's been. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com <http://www.cyphergirl.com> - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Is there no way to see the results of the polls without actually voting ? I have not had RAI but I would like to see what others experiences are. Unfortunately the Yahoo screen says that the results will not be revealed until after voting. Anyone ? Kate. Re: To Patti > I really don't want to spook you by asking this question, as I am DELIGHTED > to hear that you are feeling better but I am interested to know if there are > other members here who did well on RAI for a few years and then became > unhappy with the results later? In the interest of trying to figure that out, I've posted two polls. One for people who feel their RAI experience was GOOD, and one for those who feel they had a bad experience. The vote is anonymous, but if everyone votes, it should give us a snapshot of how many think RAI was good and how long it's been -- and also how many thought RAI was bad for them and how long it's been. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com <http://www.cyphergirl.com> - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Is there no way to see the results of the polls without actually voting ? I have not had RAI but I would like to see what others experiences are. Unfortunately the Yahoo screen says that the results will not be revealed until after voting. Anyone ? Kate. Re: To Patti > I really don't want to spook you by asking this question, as I am DELIGHTED > to hear that you are feeling better but I am interested to know if there are > other members here who did well on RAI for a few years and then became > unhappy with the results later? In the interest of trying to figure that out, I've posted two polls. One for people who feel their RAI experience was GOOD, and one for those who feel they had a bad experience. The vote is anonymous, but if everyone votes, it should give us a snapshot of how many think RAI was good and how long it's been -- and also how many thought RAI was bad for them and how long it's been. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com <http://www.cyphergirl.com> - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > Since those of us who haven't had RAI can't see the results - you have to > vote to see the results, and we don't want to skew them in any way - please > post the results to the list. I hope people speak up. This could be very > helpful. Thanks! Sorry about that -- I didn't realize that people who don't vote can't see it. So far we've got 2 " good " responses -- both 1 year or less. 2 " bad " responses, 1 2-3 years, 1 " 5 or more years " --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > Since those of us who haven't had RAI can't see the results - you have to > vote to see the results, and we don't want to skew them in any way - please > post the results to the list. I hope people speak up. This could be very > helpful. Thanks! Sorry about that -- I didn't realize that people who don't vote can't see it. So far we've got 2 " good " responses -- both 1 year or less. 2 " bad " responses, 1 2-3 years, 1 " 5 or more years " --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > Since those of us who haven't had RAI can't see the results - you have to > vote to see the results, and we don't want to skew them in any way - please > post the results to the list. I hope people speak up. This could be very > helpful. Thanks! Sorry about that -- I didn't realize that people who don't vote can't see it. So far we've got 2 " good " responses -- both 1 year or less. 2 " bad " responses, 1 2-3 years, 1 " 5 or more years " --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Patti, Could you put in another poll, one that shows both good and bad for those who have had RAI also? Like maybe a question that says If you have had RAI Do you consider this to be a Good experience Bad Experience. I can't see the results of the Good experience as the results only show after one voted and I can not vote in that group. Thanks, Jody PS I love the polls _________________________________________________________________ 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 March 7, 2002 Report Share Posted March 7, 2002 Patti, Could you put in another poll, one that shows both good and bad for those who have had RAI also? Like maybe a question that says If you have had RAI Do you consider this to be a Good experience Bad Experience. I can't see the results of the Good experience as the results only show after one voted and I can not vote in that group. Thanks, Jody PS I love the polls _________________________________________________________________ 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 March 7, 2002 Report Share Posted March 7, 2002 Elaine, I had been unaware that destroying the thyroid could cause you not to produce estrogen, testosterone, progesterone! Is this because of RAI or because of being kept hypothyroid? Thanks you for describing what you've been through. Terry > From: daisyelaine@... > Reply-To: graves_support > Date: Thu, 7 Mar 2002 11:43:33 EST > To: graves_support > Subject: Re: To Patti > > Hi Patti, > For the first few 5 or so years, I told everyone that RAI was great and that > I felt great. I didn't actually think this but I felt ok and my doctor > dismissed all my complaints saying they weren't thyroid related. The worst > part was my legs because they quickly started looking all swollen and they > used to be decent legs. I remember my kids telling me to quit doing step > aerobics thinking that was the cause. I'm pretty stubborn though so when I > figured out that I was never going to look as good or feel as good as I used > to, I tried blaming it on other things. When I finally figured out, 10 years > after RAI, that I was hypothyroid despite my labs and then started on Armour > instead of just levothyroxine, I started feeling lots better. Still, though > 12 years after RAI I can't get the dose right and being hypothyroid causes me > not to produce estrogen, testosterone, progesterone and all the thinks that > spark up life. And trying to get ALL of these hormones right has really been > a nightmare. I feel like many of these factors have conspired to age me. I > also developed an atrophied pancreas confirmed on cat scan, that my doc > thinks is a result of the RAI. Granted, I'm older than I was when I had RAI, > but I feel matronly now. I miss my old self. I was always athletic and > energetic. I'm not trying to compare my experiences with RAI to the phantom > pain of an amputated limb or anything that profound, but I've spent 12 years > feeling like something is missing. I keep adding supplements, adjusting doses > of T4, T3, even glandular pituitary hormones, 8 different estrogen compounded > combos. And I'll keep on trying til I get something right, but considering > the mild hyper symptoms I had before RAI this loss of the quality of life is > disconcerting to me. We all have different experiences though. For someone > who was very hyperthyroid and suffering, the things I mention may seem pretty > minor. Good luck, Elaine > > PS, Redhen and Jeannette did a similar satisfaction survey around 5 years ago > with a fairly large population sample. Hopefully they'll pop in here with the > results. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Elaine, I had been unaware that destroying the thyroid could cause you not to produce estrogen, testosterone, progesterone! Is this because of RAI or because of being kept hypothyroid? Thanks you for describing what you've been through. Terry > From: daisyelaine@... > Reply-To: graves_support > Date: Thu, 7 Mar 2002 11:43:33 EST > To: graves_support > Subject: Re: To Patti > > Hi Patti, > For the first few 5 or so years, I told everyone that RAI was great and that > I felt great. I didn't actually think this but I felt ok and my doctor > dismissed all my complaints saying they weren't thyroid related. The worst > part was my legs because they quickly started looking all swollen and they > used to be decent legs. I remember my kids telling me to quit doing step > aerobics thinking that was the cause. I'm pretty stubborn though so when I > figured out that I was never going to look as good or feel as good as I used > to, I tried blaming it on other things. When I finally figured out, 10 years > after RAI, that I was hypothyroid despite my labs and then started on Armour > instead of just levothyroxine, I started feeling lots better. Still, though > 12 years after RAI I can't get the dose right and being hypothyroid causes me > not to produce estrogen, testosterone, progesterone and all the thinks that > spark up life. And trying to get ALL of these hormones right has really been > a nightmare. I feel like many of these factors have conspired to age me. I > also developed an atrophied pancreas confirmed on cat scan, that my doc > thinks is a result of the RAI. Granted, I'm older than I was when I had RAI, > but I feel matronly now. I miss my old self. I was always athletic and > energetic. I'm not trying to compare my experiences with RAI to the phantom > pain of an amputated limb or anything that profound, but I've spent 12 years > feeling like something is missing. I keep adding supplements, adjusting doses > of T4, T3, even glandular pituitary hormones, 8 different estrogen compounded > combos. And I'll keep on trying til I get something right, but considering > the mild hyper symptoms I had before RAI this loss of the quality of life is > disconcerting to me. We all have different experiences though. For someone > who was very hyperthyroid and suffering, the things I mention may seem pretty > minor. Good luck, Elaine > > PS, Redhen and Jeannette did a similar satisfaction survey around 5 years ago > with a fairly large population sample. Hopefully they'll pop in here with the > results. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Elaine, I had been unaware that destroying the thyroid could cause you not to produce estrogen, testosterone, progesterone! Is this because of RAI or because of being kept hypothyroid? Thanks you for describing what you've been through. Terry > From: daisyelaine@... > Reply-To: graves_support > Date: Thu, 7 Mar 2002 11:43:33 EST > To: graves_support > Subject: Re: To Patti > > Hi Patti, > For the first few 5 or so years, I told everyone that RAI was great and that > I felt great. I didn't actually think this but I felt ok and my doctor > dismissed all my complaints saying they weren't thyroid related. The worst > part was my legs because they quickly started looking all swollen and they > used to be decent legs. I remember my kids telling me to quit doing step > aerobics thinking that was the cause. I'm pretty stubborn though so when I > figured out that I was never going to look as good or feel as good as I used > to, I tried blaming it on other things. When I finally figured out, 10 years > after RAI, that I was hypothyroid despite my labs and then started on Armour > instead of just levothyroxine, I started feeling lots better. Still, though > 12 years after RAI I can't get the dose right and being hypothyroid causes me > not to produce estrogen, testosterone, progesterone and all the thinks that > spark up life. And trying to get ALL of these hormones right has really been > a nightmare. I feel like many of these factors have conspired to age me. I > also developed an atrophied pancreas confirmed on cat scan, that my doc > thinks is a result of the RAI. Granted, I'm older than I was when I had RAI, > but I feel matronly now. I miss my old self. I was always athletic and > energetic. I'm not trying to compare my experiences with RAI to the phantom > pain of an amputated limb or anything that profound, but I've spent 12 years > feeling like something is missing. I keep adding supplements, adjusting doses > of T4, T3, even glandular pituitary hormones, 8 different estrogen compounded > combos. And I'll keep on trying til I get something right, but considering > the mild hyper symptoms I had before RAI this loss of the quality of life is > disconcerting to me. We all have different experiences though. For someone > who was very hyperthyroid and suffering, the things I mention may seem pretty > minor. Good luck, Elaine > > PS, Redhen and Jeannette did a similar satisfaction survey around 5 years ago > with a fairly large population sample. Hopefully they'll pop in here with the > results. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 > Patti, > Could you put in another poll, one that shows both good and bad for those > who have had RAI also? Like maybe a question that says Added. I also had a " Haven't had RAI " option so everyone can vote and see the results. *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
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