Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi : Welcome to the group. There are lots of people here with a lot of knowledge. I can only tell you from my personal experience that I think you have made a wise decision. I had RAI in 1997, and only now have been able to get my medication right. It has been a hard couple of years on me and my husband and children because of this. The most important thing is not to let your doc change your mind or make you feel like you're making a bad decision. This is your treatment and your body. There are others in this group who have had the surgery done and have been happy with their decision. Everyone is very open here in sharing their experiences, both good and bad. Good luck and keep us posted, Beverly New to group Hi, I'm new to this group, I got diagnosed with graves this past summer after feeling badly for about a year before, I've tried the anti-thyroid drugs but was allergic, I'm now just on beta-blockers. My endo. is in the process of scheduling RAI, but after alot of thought and research, and talking to others who've had RAI, including my sister, I've decided on surgery instead. I know this is a big decision, but I think this is the best choice for me, I'm telling my endo. today about my change of mind, I just don't feel comfortable about the RAI and have a bad feeling about it. My family is supportive of my decision, especially my sister, who had RAI in the 1980's and has had a very bad time ever since. I'm hoping I'm making the right decision! :-} ------------------------------------- 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 1, 2002 Report Share Posted March 1, 2002 Hi : Welcome to the group. There are lots of people here with a lot of knowledge. I can only tell you from my personal experience that I think you have made a wise decision. I had RAI in 1997, and only now have been able to get my medication right. It has been a hard couple of years on me and my husband and children because of this. The most important thing is not to let your doc change your mind or make you feel like you're making a bad decision. This is your treatment and your body. There are others in this group who have had the surgery done and have been happy with their decision. Everyone is very open here in sharing their experiences, both good and bad. Good luck and keep us posted, Beverly New to group Hi, I'm new to this group, I got diagnosed with graves this past summer after feeling badly for about a year before, I've tried the anti-thyroid drugs but was allergic, I'm now just on beta-blockers. My endo. is in the process of scheduling RAI, but after alot of thought and research, and talking to others who've had RAI, including my sister, I've decided on surgery instead. I know this is a big decision, but I think this is the best choice for me, I'm telling my endo. today about my change of mind, I just don't feel comfortable about the RAI and have a bad feeling about it. My family is supportive of my decision, especially my sister, who had RAI in the 1980's and has had a very bad time ever since. I'm hoping I'm making the right decision! :-} ------------------------------------- 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 1, 2002 Report Share Posted March 1, 2002 Hi , I'm glad you chose surgery over RAI, if it comes to that, it would be my choice as well. I'm still hoping for remission - did you know that was possible? My doctor says it can happen with or without ATDs and others have done it with just herbs and other alternative treatments. So far I'm only taking a beta blocker... and I've been following the nutrition advice on ithyroid.com. I can say that I feel so much better than I did when I started 2 months ago - most of my symptoms are gone or greatly subsided. I'm waiting for my latest labs to confirm (or not) how I'm feeling. Just wanted to let you know that there were other things you could try before having surgery which of course is so permanent. Good luck, Pam B. > Hi, I'm new to this group, I got diagnosed with graves this past > summer after feeling badly for about a year before, I've tried the > anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My endo. is in the process of scheduling RAI, but after alot of > thought and research, and talking to others who've had RAI, including > my sister, I've decided on surgery instead. I know this is a big > decision, but I think this is the best choice for me, I'm telling my > endo. today about my change of mind, I just don't feel comfortable > about the RAI and have a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi , I'm glad you chose surgery over RAI, if it comes to that, it would be my choice as well. I'm still hoping for remission - did you know that was possible? My doctor says it can happen with or without ATDs and others have done it with just herbs and other alternative treatments. So far I'm only taking a beta blocker... and I've been following the nutrition advice on ithyroid.com. I can say that I feel so much better than I did when I started 2 months ago - most of my symptoms are gone or greatly subsided. I'm waiting for my latest labs to confirm (or not) how I'm feeling. Just wanted to let you know that there were other things you could try before having surgery which of course is so permanent. Good luck, Pam B. > Hi, I'm new to this group, I got diagnosed with graves this past > summer after feeling badly for about a year before, I've tried the > anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My endo. is in the process of scheduling RAI, but after alot of > thought and research, and talking to others who've had RAI, including > my sister, I've decided on surgery instead. I know this is a big > decision, but I think this is the best choice for me, I'm telling my > endo. today about my change of mind, I just don't feel comfortable > about the RAI and have a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Welcome , > > Can you elaborate on your " allergy " to ATD's? I was pushed to RAI because I got some mild itching and, as I understand it, itching is not an uncommon side effect. Did you have hives or difficulty breathing? > > Congrats on your decision. > Laurel > Hi Laurel, yes my allergy was actually hives, they covered my whole body and even my eyelids causing them to swell shut, my joints in my knees swelled really big and I had trouble walking because they hurt, then I had trouble with breathing, and also had fever and chills, I went to the ER with the PTU because it also caused my pancreas to flare and was in agony with the pain from that too, what a mess I was! {I also have chronic pancreatitis}, my liver enzymes where elevated before I ever took the ATD's so I don't know if the medication had anything to do with it, but boy, it was qiute an experience, my endo. was kind of suprised I had such a reaction to both, but with my other health problems he thought maybe my liver couldn't process the meds. right. I was really bummed out, I was hoping to try the drugs for awhile and maybe go into remission, I've held off for months on making a decision, but my symptoms are getting nastier by the day:-{ I'm really glad I found this group, everyone has been very helpful and supportive. oh.. before I forget {that happens alot!}I wanted to ask if low grade fevers and aching leg bones was a common symptom with graves? my finger joints are also swelling and very painful, the swelling just recently started, I'm wondering if all this is connected somehow. Thanks again, :} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Welcome , > > Can you elaborate on your " allergy " to ATD's? I was pushed to RAI because I got some mild itching and, as I understand it, itching is not an uncommon side effect. Did you have hives or difficulty breathing? > > Congrats on your decision. > Laurel > Hi Laurel, yes my allergy was actually hives, they covered my whole body and even my eyelids causing them to swell shut, my joints in my knees swelled really big and I had trouble walking because they hurt, then I had trouble with breathing, and also had fever and chills, I went to the ER with the PTU because it also caused my pancreas to flare and was in agony with the pain from that too, what a mess I was! {I also have chronic pancreatitis}, my liver enzymes where elevated before I ever took the ATD's so I don't know if the medication had anything to do with it, but boy, it was qiute an experience, my endo. was kind of suprised I had such a reaction to both, but with my other health problems he thought maybe my liver couldn't process the meds. right. I was really bummed out, I was hoping to try the drugs for awhile and maybe go into remission, I've held off for months on making a decision, but my symptoms are getting nastier by the day:-{ I'm really glad I found this group, everyone has been very helpful and supportive. oh.. before I forget {that happens alot!}I wanted to ask if low grade fevers and aching leg bones was a common symptom with graves? my finger joints are also swelling and very painful, the swelling just recently started, I'm wondering if all this is connected somehow. Thanks again, :} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Hi , > That's a very good point Laurel makes and one I hadn't even thought of when > we talked. It really is quite odd to be allergic to both meds and rash doesn' > count as a true allergic reaction without hives. Even with mild hives many > patients are put on low dose antihistamines until their body gets use to the > meds. Now if you had a low white blood cell count or elevated liver enzymes > that's a different story. > > Hi, yes I did have the hives, at first it started out with what looked like huge mosqitoe bites, I actually thought that's what they where, then they just got bigger and bigger and spread everywhere on my body, and they hurt and itched real bad, my eyelids had big welts too,my joints swelled and hurt and my eyes close shut, my liver enzymes where elevated before I took the ATD's because of a pancreatic disease, but as of last month, thier finally normal again, they go up and down. My endo,. thought maybe my liver couldn't process the meds. like normal and that's why I had reaction to both, but even he's not sure why this happened, leave it to me to be the oddball:-} I was really hoping to do the drugs for awhile too before having to make the RAI/surgery decision, it's a real bummer. :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Hi , > That's a very good point Laurel makes and one I hadn't even thought of when > we talked. It really is quite odd to be allergic to both meds and rash doesn' > count as a true allergic reaction without hives. Even with mild hives many > patients are put on low dose antihistamines until their body gets use to the > meds. Now if you had a low white blood cell count or elevated liver enzymes > that's a different story. > > Hi, yes I did have the hives, at first it started out with what looked like huge mosqitoe bites, I actually thought that's what they where, then they just got bigger and bigger and spread everywhere on my body, and they hurt and itched real bad, my eyelids had big welts too,my joints swelled and hurt and my eyes close shut, my liver enzymes where elevated before I took the ATD's because of a pancreatic disease, but as of last month, thier finally normal again, they go up and down. My endo,. thought maybe my liver couldn't process the meds. like normal and that's why I had reaction to both, but even he's not sure why this happened, leave it to me to be the oddball:-} I was really hoping to do the drugs for awhile too before having to make the RAI/surgery decision, it's a real bummer. :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Hi , > That's a very good point Laurel makes and one I hadn't even thought of when > we talked. It really is quite odd to be allergic to both meds and rash doesn' > count as a true allergic reaction without hives. Even with mild hives many > patients are put on low dose antihistamines until their body gets use to the > meds. Now if you had a low white blood cell count or elevated liver enzymes > that's a different story. > > Hi, yes I did have the hives, at first it started out with what looked like huge mosqitoe bites, I actually thought that's what they where, then they just got bigger and bigger and spread everywhere on my body, and they hurt and itched real bad, my eyelids had big welts too,my joints swelled and hurt and my eyes close shut, my liver enzymes where elevated before I took the ATD's because of a pancreatic disease, but as of last month, thier finally normal again, they go up and down. My endo,. thought maybe my liver couldn't process the meds. like normal and that's why I had reaction to both, but even he's not sure why this happened, leave it to me to be the oddball:-} I was really hoping to do the drugs for awhile too before having to make the RAI/surgery decision, it's a real bummer. :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Welcome to the group ! > > You are absolutely right, treatment choice is *your* decision...and obviously > one that you are not taking lightly. Good for you!! So glad that you found > us here. I hope that this list is as helpful to you as it has been to me. > > Doris > > Thanks Doris {like that name!} for the welcome, I hope to get to know everyone! so far, everybody is so helpful, I'm really glad I found this group, actually someone I met on another board, Jody gave me the link to this group. I'm kind of nervous about telling my endo. about my new decision, but I'm sticking with it no matter what he says! hope to talk to you again, :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Welcome to the group ! > > You are absolutely right, treatment choice is *your* decision...and obviously > one that you are not taking lightly. Good for you!! So glad that you found > us here. I hope that this list is as helpful to you as it has been to me. > > Doris > > Thanks Doris {like that name!} for the welcome, I hope to get to know everyone! so far, everybody is so helpful, I'm really glad I found this group, actually someone I met on another board, Jody gave me the link to this group. I'm kind of nervous about telling my endo. about my new decision, but I'm sticking with it no matter what he says! hope to talk to you again, :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 > Welcome to the group ! > > You are absolutely right, treatment choice is *your* decision...and obviously > one that you are not taking lightly. Good for you!! So glad that you found > us here. I hope that this list is as helpful to you as it has been to me. > > Doris > > Thanks Doris {like that name!} for the welcome, I hope to get to know everyone! so far, everybody is so helpful, I'm really glad I found this group, actually someone I met on another board, Jody gave me the link to this group. I'm kind of nervous about telling my endo. about my new decision, but I'm sticking with it no matter what he says! hope to talk to you again, :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi again , If your sister has access to a computer, please, give her the url for this group and invite her in...maybe people here, and the archives can help her find a way to feel better. I was so sick for so long because I was left in hypOhell for over 4 years...finding this group, and the learning I have done have helped me to do the things I had to do to get quality back in my life again. I hope she can join us too! Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi and welcome Good luck and nice to met you. Sue At 02:46 PM 1/03/2002 -0000, you wrote: > Hi, I'm new to this group, I got diagnosed with graves this past > summ >er aer feeling badly for about a year before, I've tried the > >anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My >endo. is in the process of scheduling RAI, but after alot of > thought and >research, and talking to others who've had RAI, including > my sister, >I've decided on surgery instead. I know this is a big > decision, but I >think this is the best choice for me, I'm telling my > endo. today about >my change of mind, I just don't feel comfortable > about the RAI and have >a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi and welcome Good luck and nice to met you. Sue At 02:46 PM 1/03/2002 -0000, you wrote: > Hi, I'm new to this group, I got diagnosed with graves this past > summ >er aer feeling badly for about a year before, I've tried the > >anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My >endo. is in the process of scheduling RAI, but after alot of > thought and >research, and talking to others who've had RAI, including > my sister, >I've decided on surgery instead. I know this is a big > decision, but I >think this is the best choice for me, I'm telling my > endo. today about >my change of mind, I just don't feel comfortable > about the RAI and have >a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi everyone You mentioned 'mild itching'. I have so much itching. But I will NOT be mentioning it at my next visit. I am feeling much better and for the first time in a while. Just lately however I feel like I'm suffocating. I have to stop and think and take some deep breaths. Does this happen to anyone? And hey I might add, I had goose bumps.......do you call them that? When you actually feel the cold and little lumps come up all over you. Yeh, I felt the cold instead of sweating! LOL The ATD's must be working. Sue At 11:04 AM 1/03/2002 -0500, you wrote: > Welcome , > > " " Did you have hives or difficulty breathing? > > > > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi everyone You mentioned 'mild itching'. I have so much itching. But I will NOT be mentioning it at my next visit. I am feeling much better and for the first time in a while. Just lately however I feel like I'm suffocating. I have to stop and think and take some deep breaths. Does this happen to anyone? And hey I might add, I had goose bumps.......do you call them that? When you actually feel the cold and little lumps come up all over you. Yeh, I felt the cold instead of sweating! LOL The ATD's must be working. Sue At 11:04 AM 1/03/2002 -0500, you wrote: > Welcome , > > " " Did you have hives or difficulty breathing? > > > > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi everyone You mentioned 'mild itching'. I have so much itching. But I will NOT be mentioning it at my next visit. I am feeling much better and for the first time in a while. Just lately however I feel like I'm suffocating. I have to stop and think and take some deep breaths. Does this happen to anyone? And hey I might add, I had goose bumps.......do you call them that? When you actually feel the cold and little lumps come up all over you. Yeh, I felt the cold instead of sweating! LOL The ATD's must be working. Sue At 11:04 AM 1/03/2002 -0500, you wrote: > Welcome , > > " " Did you have hives or difficulty breathing? > > > > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi Sue, Call and get labs now, it may already be time for a dosage reduction in your ATD...if your body is that sensitive, it may not take long at all, and you certainly do NOT want to visit hypOhell. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi Sue, Call and get labs now, it may already be time for a dosage reduction in your ATD...if your body is that sensitive, it may not take long at all, and you certainly do NOT want to visit hypOhell. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Hi Sue, Call and get labs now, it may already be time for a dosage reduction in your ATD...if your body is that sensitive, it may not take long at all, and you certainly do NOT want to visit hypOhell. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2002 Report Share Posted March 3, 2002 Welcome Hope all goes for you with the endo. Good on you for doing the research so that you can make an informed decision for yourself. I hope all goes well. Cheers Caroline tan_1500 wrote: > Hi, I'm new to this group, I got diagnosed with graves this past > summer after feeling badly for about a year before, I've tried the > anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My endo. is in the process of scheduling RAI, but after alot of > thought and research, and talking to others who've had RAI, including > my sister, I've decided on surgery instead. I know this is a big > decision, but I think this is the best choice for me, I'm telling my > endo. today about my change of mind, I just don't feel comfortable > about the RAI and have a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} > > ------------------------------------- > 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 3, 2002 Report Share Posted March 3, 2002 Welcome Hope all goes for you with the endo. Good on you for doing the research so that you can make an informed decision for yourself. I hope all goes well. Cheers Caroline tan_1500 wrote: > Hi, I'm new to this group, I got diagnosed with graves this past > summer after feeling badly for about a year before, I've tried the > anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My endo. is in the process of scheduling RAI, but after alot of > thought and research, and talking to others who've had RAI, including > my sister, I've decided on surgery instead. I know this is a big > decision, but I think this is the best choice for me, I'm telling my > endo. today about my change of mind, I just don't feel comfortable > about the RAI and have a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} > > ------------------------------------- > 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 3, 2002 Report Share Posted March 3, 2002 Welcome Hope all goes for you with the endo. Good on you for doing the research so that you can make an informed decision for yourself. I hope all goes well. Cheers Caroline tan_1500 wrote: > Hi, I'm new to this group, I got diagnosed with graves this past > summer after feeling badly for about a year before, I've tried the > anti-thyroid drugs but was allergic, I'm now just on beta-blockers. > My endo. is in the process of scheduling RAI, but after alot of > thought and research, and talking to others who've had RAI, including > my sister, I've decided on surgery instead. I know this is a big > decision, but I think this is the best choice for me, I'm telling my > endo. today about my change of mind, I just don't feel comfortable > about the RAI and have a bad feeling about it. My family is > supportive of my decision, especially my sister, who had RAI in the > 1980's and has had a very bad time ever since. I'm hoping I'm making > the right decision! > > :-} > > ------------------------------------- > 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 4, 2002 Report Share Posted March 4, 2002 Hi , welcome to the group. It is great you are doing research so you can decide on what treatment is right for you. Debbie R. Quote Link to comment Share on other sites More sharing options...
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