Guest guest Report post Posted December 7, 2001 Hi Holly, >>>>Starting about two years before I had Graves, my first step out of bed >>>>in the morning was excruciating. And my thumbs alternated hurting right >>>>in the muscle part next to the palm. I had gained 30 lbs on Paxil over >>>>about 3 years, and was diagnosed with fibromyalgia.<<<< When I am hypO my feet in the morning are always so painful, and that is when I get the pains in my finger joints...mine is usually in the second joint and affects the same finger on each hand, but never more than one finger per hand at a time. I wonder if you could have been subclinically hypo at this time and a TSH wasn't showing it. Was your doctor then using just a TSH as a diagnostic indicator for your thyroid each year? >>>>I contributed all that to my weight gain. When I went hypO a few weeks >>>>ago from ATDs, those old aches and pains came back. That makes me think >>>>I might have been slightly hypo before I went hyper, even though I had >>>>my thyroid tested every year. I might have been low normal. They never >>>>told me what my levels were until I went abnormal.<<<< It has been discussed here and in another group (don't remember which one though) that Graves and Hashimotos is one in the same disease, that graves is just the hyper side of hashis. More and more personal stories are coming out of this hypo/hyper/hypo phasing. It is making this connection between the two seem even more feasible. And it might explain why some of us gain and some of us lose weight with graves. Something to ponder. >>>>When I went hyper, I didn't have any problems with the fibromyalgia or >>>>the first step down in the morning or anything. When I went hypO on the >>>>ATDs, my fibromyalgia was worse than it had ever been. I had always >>>>contributed feeling better to the fact that I started working out and >>>>lost some weight, which I'm still sure helped. But, now I think it might >>>>have been my thyroid levels more anything.<<<< I know very little about fibromyalgia except that it is very very painful. Could some people diagnosed with fibro be suffering with thryoid disease and it is being missed, or could fibro be part of thyroid disease? We can't deny the pain we have at different points and we know GD is often misdiagnosed for years...maybe it all fits together <sigh> Hope your doing better now pain wise Holly, well actually overall, but I hate the pain! Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 7, 2001 Hi Holly, >>>>Starting about two years before I had Graves, my first step out of bed >>>>in the morning was excruciating. And my thumbs alternated hurting right >>>>in the muscle part next to the palm. I had gained 30 lbs on Paxil over >>>>about 3 years, and was diagnosed with fibromyalgia.<<<< When I am hypO my feet in the morning are always so painful, and that is when I get the pains in my finger joints...mine is usually in the second joint and affects the same finger on each hand, but never more than one finger per hand at a time. I wonder if you could have been subclinically hypo at this time and a TSH wasn't showing it. Was your doctor then using just a TSH as a diagnostic indicator for your thyroid each year? >>>>I contributed all that to my weight gain. When I went hypO a few weeks >>>>ago from ATDs, those old aches and pains came back. That makes me think >>>>I might have been slightly hypo before I went hyper, even though I had >>>>my thyroid tested every year. I might have been low normal. They never >>>>told me what my levels were until I went abnormal.<<<< It has been discussed here and in another group (don't remember which one though) that Graves and Hashimotos is one in the same disease, that graves is just the hyper side of hashis. More and more personal stories are coming out of this hypo/hyper/hypo phasing. It is making this connection between the two seem even more feasible. And it might explain why some of us gain and some of us lose weight with graves. Something to ponder. >>>>When I went hyper, I didn't have any problems with the fibromyalgia or >>>>the first step down in the morning or anything. When I went hypO on the >>>>ATDs, my fibromyalgia was worse than it had ever been. I had always >>>>contributed feeling better to the fact that I started working out and >>>>lost some weight, which I'm still sure helped. But, now I think it might >>>>have been my thyroid levels more anything.<<<< I know very little about fibromyalgia except that it is very very painful. Could some people diagnosed with fibro be suffering with thryoid disease and it is being missed, or could fibro be part of thyroid disease? We can't deny the pain we have at different points and we know GD is often misdiagnosed for years...maybe it all fits together <sigh> Hope your doing better now pain wise Holly, well actually overall, but I hate the pain! Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Thanks, Jody. I hate feeling sorry for myself. I know I am so much more fortunate than so many people. Even with this disease, I am basically healthy. So many people are dealing with overall health problems, and even fatal diseases that can't be treated. I need to keep this in mind! Thanks for the kind words. Holly RE: Holly Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx <http://photos.msn.com/support/worldwide.aspx> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Thanks, Jody. I hate feeling sorry for myself. I know I am so much more fortunate than so many people. Even with this disease, I am basically healthy. So many people are dealing with overall health problems, and even fatal diseases that can't be treated. I need to keep this in mind! Thanks for the kind words. Holly RE: Holly Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx <http://photos.msn.com/support/worldwide.aspx> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Thanks, Jody. I hate feeling sorry for myself. I know I am so much more fortunate than so many people. Even with this disease, I am basically healthy. So many people are dealing with overall health problems, and even fatal diseases that can't be treated. I need to keep this in mind! Thanks for the kind words. Holly RE: Holly Hi Holly, Don't apologize for going on...there are days when I get up and I absolutely hate this disease and spend the day having a pity party for myself...and enjoy it! I won't even read posts those days because I don't want to hear anything good about this stupid disease. >>>Why don't the " bags " go away when the disease is gone? This is really >>>scaring me. <<< I still have my bags with my eyes too. One thing to keep in mind is that (you don't want to hear this) the disease isn't *gone*...you can attain remission, hopefully permanent remission, but the disease is still there. Though I have read posts in this group from a couple of people that through diet, lifestyle change and supplements they swear their disease is absolutley cured. Only time will actually tell that. If you still have antiboidies, they can still attack your eyes. The ATD's will suppress those antibodies, and eventually (hopefully) they will disappear. This is what I am hoping for with for my eyes. Even though I have had RAI in '96, I still had TSI antibodies running rampant and attacking my eyes. I don't know if the bags will ever go away, but hopefully in time they do. Maybe someone else can jump in and tell us both. >>>I've also now developed bald spots on either side of my forehead--like >>>the way men do when they start losing their hair. I've been on the verge >>>of crying all weekend. I hate this disease! And why is this just >>>happening to me now, when my levels are almost normal instead of it >>>happening before I was being treated? Did my hypo period cause the hair >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< When I was hyper, I literally lost over half of my hair...bald spots all over my head. My hair loss continued for 4 years after RAI, and at my most hypo it was the worst ever! It has stopped! Yours will too...and I have had much of my hair regrow, though not all of it, but I am older than you so maybe this is why. I do notice a bit more hair loss every time my med doses change, adding the PTU to my regimen, more loss, increasing my Armour, more loss..but it was short lived and it slowed down to normal hair loss and new growth. Please don't give up. Eventually things will slow down and get much better. For me, the first 4 1/2 years dealing with the weight gain and the hair loss were the very worst of this disease and could put me in tears quicker than you could blink an eye. I use to cover up my mirrors so I didn't have to see my reflection. I still get bummed about the weight gain from time to time but I no longer beat myself up over it...I am still me, actually I am a better me because I take much better care of myself now. It took me a long time to get to this point. Hang in there Holly, Take care, Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx <http://photos.msn.com/support/worldwide.aspx> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Holly, As Jody correctly stated the disease is not gone. In my situation my Opthalmologist said those really arn't bags under my eyes but the fatty tissue of the eyes that have been force out of the socket along with my eyes. With my still being some what swollen from my orbit decompression surgery I can't tell if my bags have totaly left but I can tell that they are much better than before. Hang in there as we all have those miserable days. Keep the faith that things will get better and I'm sure they will with the proper help from your doctors. Joe > Hi Holly, > Don't apologize for going on...there are days when I get up and I absolutely > hate this disease and spend the day having a pity party for myself...and > enjoy it! I won't even read posts those days because I don't want to hear > anything good about this stupid disease. > > > >>>Why don't the " bags " go away when the disease is gone? This is really > >>>scaring me. <<< > > I still have my bags with my eyes too. One thing to keep in mind is that > (you don't want to hear this) the disease isn't *gone*...you can attain > remission, hopefully permanent remission, but the disease is still there. > Though I have read posts in this group from a couple of people that through > diet, lifestyle change and supplements they swear their disease is > absolutley cured. Only time will actually tell that. > > If you still have antiboidies, they can still attack your eyes. The ATD's > will suppress those antibodies, and eventually (hopefully) they will > disappear. This is what I am hoping for with for my eyes. Even though I > have had RAI in '96, I still had TSI antibodies running rampant and > attacking my eyes. I don't know if the bags will ever go away, but > hopefully in time they do. Maybe someone else can jump in and tell us both. > > >>>I've also now developed bald spots on either side of my forehead- -like > >>>the way men do when they start losing their hair. I've been on the verge > >>>of crying all weekend. I hate this disease! And why is this just > >>>happening to me now, when my levels are almost normal instead of it > >>>happening before I was being treated? Did my hypo period cause the hair > >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< > > When I was hyper, I literally lost over half of my hair...bald spots all > over my head. My hair loss continued for 4 years after RAI, and at my most > hypo it was the worst ever! It has stopped! Yours will too...and I have > had much of my hair regrow, though not all of it, but I am older than you so > maybe this is why. I do notice a bit more hair loss every time my med doses > change, adding the PTU to my regimen, more loss, increasing my Armour, more > loss..but it was short lived and it slowed down to normal hair loss and new > growth. > > Please don't give up. Eventually things will slow down and get much better. > For me, the first 4 1/2 years dealing with the weight gain and the hair > loss were the very worst of this disease and could put me in tears quicker > than you could blink an eye. I use to cover up my mirrors so I didn't have > to see my reflection. I still get bummed about the weight gain from time to > time but I no longer beat myself up over it...I am still me, actually I am a > better me because I take much better care of myself now. It took me a long > time to get to this point. > > Hang in there Holly, > Take care, > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Holly, As Jody correctly stated the disease is not gone. In my situation my Opthalmologist said those really arn't bags under my eyes but the fatty tissue of the eyes that have been force out of the socket along with my eyes. With my still being some what swollen from my orbit decompression surgery I can't tell if my bags have totaly left but I can tell that they are much better than before. Hang in there as we all have those miserable days. Keep the faith that things will get better and I'm sure they will with the proper help from your doctors. Joe > Hi Holly, > Don't apologize for going on...there are days when I get up and I absolutely > hate this disease and spend the day having a pity party for myself...and > enjoy it! I won't even read posts those days because I don't want to hear > anything good about this stupid disease. > > > >>>Why don't the " bags " go away when the disease is gone? This is really > >>>scaring me. <<< > > I still have my bags with my eyes too. One thing to keep in mind is that > (you don't want to hear this) the disease isn't *gone*...you can attain > remission, hopefully permanent remission, but the disease is still there. > Though I have read posts in this group from a couple of people that through > diet, lifestyle change and supplements they swear their disease is > absolutley cured. Only time will actually tell that. > > If you still have antiboidies, they can still attack your eyes. The ATD's > will suppress those antibodies, and eventually (hopefully) they will > disappear. This is what I am hoping for with for my eyes. Even though I > have had RAI in '96, I still had TSI antibodies running rampant and > attacking my eyes. I don't know if the bags will ever go away, but > hopefully in time they do. Maybe someone else can jump in and tell us both. > > >>>I've also now developed bald spots on either side of my forehead- -like > >>>the way men do when they start losing their hair. I've been on the verge > >>>of crying all weekend. I hate this disease! And why is this just > >>>happening to me now, when my levels are almost normal instead of it > >>>happening before I was being treated? Did my hypo period cause the hair > >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< > > When I was hyper, I literally lost over half of my hair...bald spots all > over my head. My hair loss continued for 4 years after RAI, and at my most > hypo it was the worst ever! It has stopped! Yours will too...and I have > had much of my hair regrow, though not all of it, but I am older than you so > maybe this is why. I do notice a bit more hair loss every time my med doses > change, adding the PTU to my regimen, more loss, increasing my Armour, more > loss..but it was short lived and it slowed down to normal hair loss and new > growth. > > Please don't give up. Eventually things will slow down and get much better. > For me, the first 4 1/2 years dealing with the weight gain and the hair > loss were the very worst of this disease and could put me in tears quicker > than you could blink an eye. I use to cover up my mirrors so I didn't have > to see my reflection. I still get bummed about the weight gain from time to > time but I no longer beat myself up over it...I am still me, actually I am a > better me because I take much better care of myself now. It took me a long > time to get to this point. > > Hang in there Holly, > Take care, > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Holly, As Jody correctly stated the disease is not gone. In my situation my Opthalmologist said those really arn't bags under my eyes but the fatty tissue of the eyes that have been force out of the socket along with my eyes. With my still being some what swollen from my orbit decompression surgery I can't tell if my bags have totaly left but I can tell that they are much better than before. Hang in there as we all have those miserable days. Keep the faith that things will get better and I'm sure they will with the proper help from your doctors. Joe > Hi Holly, > Don't apologize for going on...there are days when I get up and I absolutely > hate this disease and spend the day having a pity party for myself...and > enjoy it! I won't even read posts those days because I don't want to hear > anything good about this stupid disease. > > > >>>Why don't the " bags " go away when the disease is gone? This is really > >>>scaring me. <<< > > I still have my bags with my eyes too. One thing to keep in mind is that > (you don't want to hear this) the disease isn't *gone*...you can attain > remission, hopefully permanent remission, but the disease is still there. > Though I have read posts in this group from a couple of people that through > diet, lifestyle change and supplements they swear their disease is > absolutley cured. Only time will actually tell that. > > If you still have antiboidies, they can still attack your eyes. The ATD's > will suppress those antibodies, and eventually (hopefully) they will > disappear. This is what I am hoping for with for my eyes. Even though I > have had RAI in '96, I still had TSI antibodies running rampant and > attacking my eyes. I don't know if the bags will ever go away, but > hopefully in time they do. Maybe someone else can jump in and tell us both. > > >>>I've also now developed bald spots on either side of my forehead- -like > >>>the way men do when they start losing their hair. I've been on the verge > >>>of crying all weekend. I hate this disease! And why is this just > >>>happening to me now, when my levels are almost normal instead of it > >>>happening before I was being treated? Did my hypo period cause the hair > >>>loss? I'm sorry to go on like this. It's been a bad few days...<<< > > When I was hyper, I literally lost over half of my hair...bald spots all > over my head. My hair loss continued for 4 years after RAI, and at my most > hypo it was the worst ever! It has stopped! Yours will too...and I have > had much of my hair regrow, though not all of it, but I am older than you so > maybe this is why. I do notice a bit more hair loss every time my med doses > change, adding the PTU to my regimen, more loss, increasing my Armour, more > loss..but it was short lived and it slowed down to normal hair loss and new > growth. > > Please don't give up. Eventually things will slow down and get much better. > For me, the first 4 1/2 years dealing with the weight gain and the hair > loss were the very worst of this disease and could put me in tears quicker > than you could blink an eye. I use to cover up my mirrors so I didn't have > to see my reflection. I still get bummed about the weight gain from time to > time but I no longer beat myself up over it...I am still me, actually I am a > better me because I take much better care of myself now. It took me a long > time to get to this point. > > Hang in there Holly, > Take care, > Jody > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Joe and Holly- I've had Graves' for 15 years and the " bags " have never gone away. After a year of severe exophthlamus, my eyes eventually receded until it was only mild but those darned bags were still there. I know had eye surgery that she's very pleased with to remove them. I would consider it too except I wasn't smart enough to dig up before and after photos at the time. Since Graves', I've always thought I looked like a drug addict. Heck! I'm considering this surgery even though we'd have to pay out of pocket. But, 1st we have all the infertility stuff to deal with. Egads! It adds up. Take care, > Holly, As Jody correctly stated the disease is not gone. In my > situation my Opthalmologist said those really arn't bags under my > eyes but the fatty tissue of the eyes that have been force out of the > socket along with my eyes. With my still being some what swollen from > my orbit decompression surgery I can't tell if my bags have totaly > left but I can tell that they are much better than before. Hang in > there as we all have those miserable days. Keep the faith that things > will get better and I'm sure they will with the proper help from your > doctors. > Joe Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Joe and Holly- I've had Graves' for 15 years and the " bags " have never gone away. After a year of severe exophthlamus, my eyes eventually receded until it was only mild but those darned bags were still there. I know had eye surgery that she's very pleased with to remove them. I would consider it too except I wasn't smart enough to dig up before and after photos at the time. Since Graves', I've always thought I looked like a drug addict. Heck! I'm considering this surgery even though we'd have to pay out of pocket. But, 1st we have all the infertility stuff to deal with. Egads! It adds up. Take care, > Holly, As Jody correctly stated the disease is not gone. In my > situation my Opthalmologist said those really arn't bags under my > eyes but the fatty tissue of the eyes that have been force out of the > socket along with my eyes. With my still being some what swollen from > my orbit decompression surgery I can't tell if my bags have totaly > left but I can tell that they are much better than before. Hang in > there as we all have those miserable days. Keep the faith that things > will get better and I'm sure they will with the proper help from your > doctors. > Joe Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 7, 2002 Hi Joe and Holly- I've had Graves' for 15 years and the " bags " have never gone away. After a year of severe exophthlamus, my eyes eventually receded until it was only mild but those darned bags were still there. I know had eye surgery that she's very pleased with to remove them. I would consider it too except I wasn't smart enough to dig up before and after photos at the time. Since Graves', I've always thought I looked like a drug addict. Heck! I'm considering this surgery even though we'd have to pay out of pocket. But, 1st we have all the infertility stuff to deal with. Egads! It adds up. Take care, > Holly, As Jody correctly stated the disease is not gone. In my > situation my Opthalmologist said those really arn't bags under my > eyes but the fatty tissue of the eyes that have been force out of the > socket along with my eyes. With my still being some what swollen from > my orbit decompression surgery I can't tell if my bags have totaly > left but I can tell that they are much better than before. Hang in > there as we all have those miserable days. Keep the faith that things > will get better and I'm sure they will with the proper help from your > doctors. > Joe Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2002 Hi Pam. I'm still waiting on my lab results from my last appt.. I'll probably call today and see if they've gotten them yet. I'm actually feeling pretty good. I increased my dose by 2.5 mg., and that has made a huge difference. No more nausea! I had a pretty decent appointment this time. Even though my doc said that I still need to consider RAI, this time he said things seems to be going fine with me, and there's no hurry. He said he doesn't want me to do anything I'm not comfortable with. That's a big turnaround from our previous meetings! I brought up surgery, and he tried to give me all kinds of reasons not to have it. I don't understand why they would push RAI and oppose surgery. If their intention were to get us well, which is the excuse they give for the RAI, then why would they push one " solution " over the other? Is there some kind of kickback for using radioactive iodine? Who supplies this stuff anyway? Holly Holly Hi, I have been wondering how you are doing. Hanging in there one one dose and all, waiting for labs. When is your next lab due? Seems to me you are just about there ? -Pam- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2002 Hi Pam. I'm still waiting on my lab results from my last appt.. I'll probably call today and see if they've gotten them yet. I'm actually feeling pretty good. I increased my dose by 2.5 mg., and that has made a huge difference. No more nausea! I had a pretty decent appointment this time. Even though my doc said that I still need to consider RAI, this time he said things seems to be going fine with me, and there's no hurry. He said he doesn't want me to do anything I'm not comfortable with. That's a big turnaround from our previous meetings! I brought up surgery, and he tried to give me all kinds of reasons not to have it. I don't understand why they would push RAI and oppose surgery. If their intention were to get us well, which is the excuse they give for the RAI, then why would they push one " solution " over the other? Is there some kind of kickback for using radioactive iodine? Who supplies this stuff anyway? Holly Holly Hi, I have been wondering how you are doing. Hanging in there one one dose and all, waiting for labs. When is your next lab due? Seems to me you are just about there ? -Pam- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2002 Hi Pam. I'm still waiting on my lab results from my last appt.. I'll probably call today and see if they've gotten them yet. I'm actually feeling pretty good. I increased my dose by 2.5 mg., and that has made a huge difference. No more nausea! I had a pretty decent appointment this time. Even though my doc said that I still need to consider RAI, this time he said things seems to be going fine with me, and there's no hurry. He said he doesn't want me to do anything I'm not comfortable with. That's a big turnaround from our previous meetings! I brought up surgery, and he tried to give me all kinds of reasons not to have it. I don't understand why they would push RAI and oppose surgery. If their intention were to get us well, which is the excuse they give for the RAI, then why would they push one " solution " over the other? Is there some kind of kickback for using radioactive iodine? Who supplies this stuff anyway? Holly Holly Hi, I have been wondering how you are doing. Hanging in there one one dose and all, waiting for labs. When is your next lab due? Seems to me you are just about there ? -Pam- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2002 Hi Holly - I'm just curious as to what the reasons your doc gave you for not having surgery were? Just wondering, that's all. >>I got the 15% figure off the NGDF board. >>At the same time, the NGDF seems to be a little (no, a >>lot!) skewed in favor of RAI. That makes it tough for us still trying to >>decide on our best treatment option. I'm glad it's not just me who thought the NGDF was a little biased! It seems 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 have met an awful lot of people (not just on support boards, either) who had RAI and had problems of one kind or another. Have I just met the whole 15% of people with bad experiences in Iowa, or is perhaps the actual statistic a bit higher? Wonder what they classify as " having problems " after RAI, too. Maybe that's why the stat is so low. Has anyone else met people " outside " a support board with RAI problems and also think that 15% seems a little on the low side? Hmm... Holly > >Hi, >I have been wondering how you are doing. Hanging in there one one dose and >all, waiting >for labs. When is your next lab due? Seems to me you are just about there ? > >-Pam- > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2002 Hi Holly - I'm just curious as to what the reasons your doc gave you for not having surgery were? Just wondering, that's all. >>I got the 15% figure off the NGDF board. >>At the same time, the NGDF seems to be a little (no, a >>lot!) skewed in favor of RAI. That makes it tough for us still trying to >>decide on our best treatment option. I'm glad it's not just me who thought the NGDF was a little biased! It seems 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 have met an awful lot of people (not just on support boards, either) who had RAI and had problems of one kind or another. Have I just met the whole 15% of people with bad experiences in Iowa, or is perhaps the actual statistic a bit higher? Wonder what they classify as " having problems " after RAI, too. Maybe that's why the stat is so low. Has anyone else met people " outside " a support board with RAI problems and also think that 15% seems a little on the low side? Hmm... Holly > >Hi, >I have been wondering how you are doing. Hanging in there one one dose and >all, waiting >for labs. When is your next lab due? Seems to me you are just about there ? > >-Pam- > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 > 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! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 > 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! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 > 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! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 Hi - The usual reasons that mean nothing to me as I've found good surgeons. 1. The scar-which I know for a fact is not a problem. Was it Darnell or someone else (I can't remember for sure) who said that her scar healed nicely and is almost unnoticeable? My brother-in-law had the surgery twice with his thyroid cancer and they went in the same place both times, and even with that, his scar is almost undetectable. 2. Possible damage to the voice or parathyroid-that's the whole reason I found surgeons who do this several times a month and use nerve monitoring to prevent damage to the vocal chords. 3. Possible recurrence of the symptoms because some of the thyroid is left. This is a real issue, as I've discovered people who have had this surgery and had symptoms return. One of them was after 20 years, which I think I could handle. I'd be 57 after 20 years, and not as concerned about developing cancer in my lifetime if I chose the RAI then. But the other was in a relatively short time after the surgery. Of course, my understanding is that some of the thyroid remains after RAI as well. The thing is to have enough of the thyroid removed so as to lesson the chance of that happening. I think I saw someone out there who was having 98% removed. The one who had a recurrence soon after the surgery had 80% removed, I think it was. The person who told me about the 15% was one of the moderators, and they couldn't site a study, but thought they had heard that percentage somewhere, so it's by no means exact or official. But, out of 4 people I know, 3 don't seem to have had any trouble, and if I remove the third who had it fairly recently, then that's still 50%. I'm by no means advocating RAI. But it is an option, and possibly the best option for some people, and I think it's unfair for us to completely scare people away from it. I've seen that happen over and over as new people join our group. There are people out there who are not good candidates for surgery because of health problems or allergies to anesthesia. Or they're just plain terrified of surgery. They might also be unable to tolerate ATDs. Or they might not respond well to the ATDs and suffer unnecessarily for years when the RAI could have gotten them back on track again. I do know that some people have the RAI and go on to live healthy, productive lives. People do make an informed choice to have it. It isn't always just shoved blindly down our throats. Granted, it is most of the time, but not always. I really sick of taking the ATDs, and I have to make myself keep trying with them. I wonder if I'm making the right choice. I got my labs yesterday, and I'm now more hyper than I was when I started. This after being severely hypo in November and December. I've basically wasted 7 months of my life suffering and worrying, and I wonder how long I should continue doing this. Carrying on with this disease is causing long-term health problems. I worry about my heart. I worry that my mind is going to be permanently damaged. It's affecting my career. It's affecting my relationship with my daughter. If I die tomorrow, will it have been worth it to have " lost " these last 7 months? We're all so different, and we need to be able to take our differences and make choices that are best for us individually. It's hard to do when we hear nothing but horror stories about one of our options. That's all I'm trying to say. Take care, Holly Holly > >Hi, >I have been wondering how you are doing. Hanging in there one one dose and >all, waiting >for labs. When is your next lab due? Seems to me you are just about there ? > >-Pam- > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 Hi - The usual reasons that mean nothing to me as I've found good surgeons. 1. The scar-which I know for a fact is not a problem. Was it Darnell or someone else (I can't remember for sure) who said that her scar healed nicely and is almost unnoticeable? My brother-in-law had the surgery twice with his thyroid cancer and they went in the same place both times, and even with that, his scar is almost undetectable. 2. Possible damage to the voice or parathyroid-that's the whole reason I found surgeons who do this several times a month and use nerve monitoring to prevent damage to the vocal chords. 3. Possible recurrence of the symptoms because some of the thyroid is left. This is a real issue, as I've discovered people who have had this surgery and had symptoms return. One of them was after 20 years, which I think I could handle. I'd be 57 after 20 years, and not as concerned about developing cancer in my lifetime if I chose the RAI then. But the other was in a relatively short time after the surgery. Of course, my understanding is that some of the thyroid remains after RAI as well. The thing is to have enough of the thyroid removed so as to lesson the chance of that happening. I think I saw someone out there who was having 98% removed. The one who had a recurrence soon after the surgery had 80% removed, I think it was. The person who told me about the 15% was one of the moderators, and they couldn't site a study, but thought they had heard that percentage somewhere, so it's by no means exact or official. But, out of 4 people I know, 3 don't seem to have had any trouble, and if I remove the third who had it fairly recently, then that's still 50%. I'm by no means advocating RAI. But it is an option, and possibly the best option for some people, and I think it's unfair for us to completely scare people away from it. I've seen that happen over and over as new people join our group. There are people out there who are not good candidates for surgery because of health problems or allergies to anesthesia. Or they're just plain terrified of surgery. They might also be unable to tolerate ATDs. Or they might not respond well to the ATDs and suffer unnecessarily for years when the RAI could have gotten them back on track again. I do know that some people have the RAI and go on to live healthy, productive lives. People do make an informed choice to have it. It isn't always just shoved blindly down our throats. Granted, it is most of the time, but not always. I really sick of taking the ATDs, and I have to make myself keep trying with them. I wonder if I'm making the right choice. I got my labs yesterday, and I'm now more hyper than I was when I started. This after being severely hypo in November and December. I've basically wasted 7 months of my life suffering and worrying, and I wonder how long I should continue doing this. Carrying on with this disease is causing long-term health problems. I worry about my heart. I worry that my mind is going to be permanently damaged. It's affecting my career. It's affecting my relationship with my daughter. If I die tomorrow, will it have been worth it to have " lost " these last 7 months? We're all so different, and we need to be able to take our differences and make choices that are best for us individually. It's hard to do when we hear nothing but horror stories about one of our options. That's all I'm trying to say. Take care, Holly Holly > >Hi, >I have been wondering how you are doing. Hanging in there one one dose and >all, waiting >for labs. When is your next lab due? Seems to me you are just about there ? > >-Pam- > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 5, 2002 Hi - The usual reasons that mean nothing to me as I've found good surgeons. 1. The scar-which I know for a fact is not a problem. Was it Darnell or someone else (I can't remember for sure) who said that her scar healed nicely and is almost unnoticeable? My brother-in-law had the surgery twice with his thyroid cancer and they went in the same place both times, and even with that, his scar is almost undetectable. 2. Possible damage to the voice or parathyroid-that's the whole reason I found surgeons who do this several times a month and use nerve monitoring to prevent damage to the vocal chords. 3. Possible recurrence of the symptoms because some of the thyroid is left. This is a real issue, as I've discovered people who have had this surgery and had symptoms return. One of them was after 20 years, which I think I could handle. I'd be 57 after 20 years, and not as concerned about developing cancer in my lifetime if I chose the RAI then. But the other was in a relatively short time after the surgery. Of course, my understanding is that some of the thyroid remains after RAI as well. The thing is to have enough of the thyroid removed so as to lesson the chance of that happening. I think I saw someone out there who was having 98% removed. The one who had a recurrence soon after the surgery had 80% removed, I think it was. The person who told me about the 15% was one of the moderators, and they couldn't site a study, but thought they had heard that percentage somewhere, so it's by no means exact or official. But, out of 4 people I know, 3 don't seem to have had any trouble, and if I remove the third who had it fairly recently, then that's still 50%. I'm by no means advocating RAI. But it is an option, and possibly the best option for some people, and I think it's unfair for us to completely scare people away from it. I've seen that happen over and over as new people join our group. There are people out there who are not good candidates for surgery because of health problems or allergies to anesthesia. Or they're just plain terrified of surgery. They might also be unable to tolerate ATDs. Or they might not respond well to the ATDs and suffer unnecessarily for years when the RAI could have gotten them back on track again. I do know that some people have the RAI and go on to live healthy, productive lives. People do make an informed choice to have it. It isn't always just shoved blindly down our throats. Granted, it is most of the time, but not always. I really sick of taking the ATDs, and I have to make myself keep trying with them. I wonder if I'm making the right choice. I got my labs yesterday, and I'm now more hyper than I was when I started. This after being severely hypo in November and December. I've basically wasted 7 months of my life suffering and worrying, and I wonder how long I should continue doing this. Carrying on with this disease is causing long-term health problems. I worry about my heart. I worry that my mind is going to be permanently damaged. It's affecting my career. It's affecting my relationship with my daughter. If I die tomorrow, will it have been worth it to have " lost " these last 7 months? We're all so different, and we need to be able to take our differences and make choices that are best for us individually. It's hard to do when we hear nothing but horror stories about one of our options. That's all I'm trying to say. Take care, Holly Holly > >Hi, >I have been wondering how you are doing. Hanging in there one one dose and >all, waiting >for labs. When is your next lab due? Seems to me you are just about there ? > >-Pam- > > > > > > Quote Share this post Link to post Share on other sites
