Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hi all! I'm the relatively new person to this group, with my boyfriend having been diagnosed in late Jan. with Grave's, and he went through his RAI treatment just over two weeks ago now. (He's a veteran, so they kind of gave him the idea that no other option BUT RAI was a " right choice. " ) My question is: So many of you are so against RAI (Jody, you even said you've regretted it), I am wondering if there are ANY stories of persons having had RAI that are doing okay ... or even doing WELL? My dearest Joe seems to be doing great. He is feeling good right now on his meds (Propanolol 20mg and Propylthiouracil 50 mg each 3x per day) and doesn't appear or seem to be none the worse for it! he's feeling happy and has been Hyper-symptoms free for two weeks now! How heavenly for both of us! I would really like to hear from anyone on their personal views about this and what may lie ahead. The road seems so nice to me now, after having suffered with him through the extreme hyper period. (Does this really occur again after treatment?) I'm holding my good thoughts knowing that there may be a " crash " for him after his thyroid dies off also. I know that it may not have been the BEST choice (I wasn't with him when he made it and therefore couldn't research, etc.) but it is the choice he made. I'd love any input. And Jody, if you would share again (I'm sure you have before I joined the group) why you are so against this treatment (I think your contributions are so wonderful so I hold your opinions in the highest regard!) I would be grateful to know. Thanks all and hang in there, have a great holiday and smile! Ann in Portland, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Hi all! I'm the relatively new person to this group, with my boyfriend having been diagnosed in late Jan. with Grave's, and he went through his RAI treatment just over two weeks ago now. (He's a veteran, so they kind of gave him the idea that no other option BUT RAI was a " right choice. " ) My question is: So many of you are so against RAI (Jody, you even said you've regretted it), I am wondering if there are ANY stories of persons having had RAI that are doing okay ... or even doing WELL? My dearest Joe seems to be doing great. He is feeling good right now on his meds (Propanolol 20mg and Propylthiouracil 50 mg each 3x per day) and doesn't appear or seem to be none the worse for it! he's feeling happy and has been Hyper-symptoms free for two weeks now! How heavenly for both of us! I would really like to hear from anyone on their personal views about this and what may lie ahead. The road seems so nice to me now, after having suffered with him through the extreme hyper period. (Does this really occur again after treatment?) I'm holding my good thoughts knowing that there may be a " crash " for him after his thyroid dies off also. I know that it may not have been the BEST choice (I wasn't with him when he made it and therefore couldn't research, etc.) but it is the choice he made. I'd love any input. And Jody, if you would share again (I'm sure you have before I joined the group) why you are so against this treatment (I think your contributions are so wonderful so I hold your opinions in the highest regard!) I would be grateful to know. Thanks all and hang in there, have a great holiday and smile! Ann in Portland, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Ann, men do seem to do better than women, maybe because the reproductive and hormonal issues aren't the same. (Apology to men everywhere - yes, you do have hormones and are entitled to them, as women are.) Before I found this group I was on another thyroid list (thyroid@...) which is overwhelmingly made up of hypo patients, which your boyfriend is almost inevitably going to become. One active member, at least as of a year and a half ago, is a well regarded dr. who isn't an endo but treats hypo patients. Something that your bf seems to have going for him is a qualified doc. I hear of so many patients who have RAI and are told to come back in 6 weeks and either are excessively hypo or end up in the ER with thyroid storm first. It looks like your dr. is monitoring him well. Good luck, Fay ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Ann, men do seem to do better than women, maybe because the reproductive and hormonal issues aren't the same. (Apology to men everywhere - yes, you do have hormones and are entitled to them, as women are.) Before I found this group I was on another thyroid list (thyroid@...) which is overwhelmingly made up of hypo patients, which your boyfriend is almost inevitably going to become. One active member, at least as of a year and a half ago, is a well regarded dr. who isn't an endo but treats hypo patients. Something that your bf seems to have going for him is a qualified doc. I hear of so many patients who have RAI and are told to come back in 6 weeks and either are excessively hypo or end up in the ER with thyroid storm first. It looks like your dr. is monitoring him well. Good luck, Fay ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Hi Ann, I wrote you privately and also sent the extended symptoms list to you separately so you can print it up and have it handy. I forgot to mention that if you haven't gotten copies of Joe's labs from the beginning, I would go back and get copies from time of diagnosis and for future labs, make a note on them the day he gets labs done as to how he feels that day, when they come back attach the note to that so you can see the target point he wants level wise to feel good when he starts his hormone replacement. This will save lots of time and aggravation down the road. Take care, 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 31, 2002 Report Share Posted March 31, 2002 Hi Ann, I wrote you privately and also sent the extended symptoms list to you separately so you can print it up and have it handy. I forgot to mention that if you haven't gotten copies of Joe's labs from the beginning, I would go back and get copies from time of diagnosis and for future labs, make a note on them the day he gets labs done as to how he feels that day, when they come back attach the note to that so you can see the target point he wants level wise to feel good when he starts his hormone replacement. This will save lots of time and aggravation down the road. Take care, 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 31, 2002 Report Share Posted March 31, 2002 Hi Ann, I wrote you privately and also sent the extended symptoms list to you separately so you can print it up and have it handy. I forgot to mention that if you haven't gotten copies of Joe's labs from the beginning, I would go back and get copies from time of diagnosis and for future labs, make a note on them the day he gets labs done as to how he feels that day, when they come back attach the note to that so you can see the target point he wants level wise to feel good when he starts his hormone replacement. This will save lots of time and aggravation down the road. Take care, 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 31, 2002 Report Share Posted March 31, 2002 Hi Ann, ILike Jody, I also had RAI and regret it. While Joe may not have any problems, he'll most likely become hypothyroid before long. He may experience severe muscle pain, especially of the large muscles, particularly those of the back and he may experience depression, weight gain, constipation and other symptoms of hypothyroidism. In some people, RAI also induces Graves' ophthalmopathy, the eye disease associated with GD. As long as he knows what to watch for, he can ask for blood tests before his symptoms become too bad. For the first few weeks after RAI, patients usually become more hyperthyroid so it's good that he's on the meds that lower thryoid hormone levels and reduce symptoms. Because men have larger, denser thyroid glands, they are usually given a higher ablative dose than women. Still, they often need a second dose. Joe may be one of the lucky ones who end up euthyroid, with normal thyroid hormone levels, for some time. Even people who are still hyper months after RAI, though, eventually become hypothyroid with more than 90% become hypothyroid within 10 years after RAI. It's great that you're learning all about GD so that you can help him with each step as he begins to heal. Good luck, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 I'm one of the few that classifies my RAI experience as " good. " I will give you a warning though.... three weeks after having the RAI, my TSH dropped to .003 . Make sure his doctor watches him very carefully and keeps his medications adjusted. Request labs every two weeks, because there will come a time when he (probably) will suddenly go hypO like I did at the 12 week mark. I am currently on Synthroid. Had to call my endo's office this morning and request labs as I'm finding that this past weekend I was highly emotional and easily agitated, so I think that I need some Synthroid adjustment. Overall, I'm feeling good now, and am still happy that I had it done. Just make SURE that his doctors constantly monitor his levels and keep his medications well adjusted -- that's the way to avoid problems like tremors, high heart rate, and other troublesome stuff. My website (http://www.cyphergirl.com) has my complete story from diagnosis to treatment, or feel free to email me privately if you wish. --patti > Date: Sun, 31 Mar 2002 01:24:06 EST > From: LlBuddha@... > Reply-To: graves_support > To: graves_support > Subject: Re: RAI Treatment > > Hi all! > > I'm the relatively new person to this group, with my boyfriend having been > diagnosed in late Jan. with Grave's, and he went through his RAI treatment > just over two weeks ago now. (He's a veteran, so they kind of gave him the > idea that no other option BUT RAI was a " right choice. " ) > > My question is: So many of you are so against RAI (Jody, you even said you've > regretted it), I am wondering if there are ANY stories of persons having had > RAI that are doing okay ... or even doing WELL? My dearest Joe seems to be > doing great. He is feeling good right now on his meds (Propanolol 20mg and > Propylthiouracil 50 mg each 3x per day) and doesn't appear or seem to be none > the worse for it! he's feeling happy and has been Hyper-symptoms free for > two weeks now! How heavenly for both of us! > > I would really like to hear from anyone on their personal views about this > and what may lie ahead. The road seems so nice to me now, after having > suffered with him through the extreme hyper period. (Does this really occur > again after treatment?) I'm holding my good thoughts knowing that there may > be a " crash " for him after his thyroid dies off also. I know that it may not > have been the BEST choice (I wasn't with him when he made it and therefore > couldn't research, etc.) but it is the choice he made. I'd love any input. > > And Jody, if you would share again (I'm sure you have before I joined the > group) why you are so against this treatment (I think your contributions are > so wonderful so I hold your opinions in the highest regard!) I would be > grateful to know. > > Thanks all and hang in there, have a great holiday and smile! > > Ann in Portland, Oregon > > > ------------------------------------- > 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 April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, After RAI, your symptoms of hyperthyroidism generally become temporarily worse because of thyroid hormone and antibodies being released from dying thyroid cells. You may also experience a sore throat from the radiation thyroiditis. You will also be at risk for developing thyroid storm for about 6 weeks. As you become hypothyroid you may experience severe muscle pain, especially in the large muscles of the back and thighs. You may also experience muscle swelling since the muscle fibers changes, looking strong although they become weak (Hoffman's syndrome). Other common symptoms of hypothyroidism include weight gain, depression, goiter, constipation, dry skin and hair and mental fog. When you become severely hypothyroid, you can develop myxedema coma after 6 weeks without thyroid hormone so you need to watch out for symptoms. RAI also increases your risk of developing Graves' ophthalmopathy and primary myxedema because of the released thyroid antibodies and immune system stimulation. Because of the fluctuating antibody levels, it can take quite some time to regulate your thyroid hormone levels. Twelve years after RAI, I still have thyroid antibodies and my thyroid hormone levels are still constantly changing. My dose of replacement hormone was again changed last week. People who become hypothyroid are more likely to experience permanent weight gain, and it's not unusual to gain up to 50 pounds within the first two years. People who have RAI report continuing Graves' rage which could be attributed to the antibody levels. Until the immune system dysfunction that causes Graves' disease is addressed, you're at risk for developing other autoimmune disorders, particularly fibromyalgia. Other organs may be affected by RAI causing digestive problems and reproductive problems. If I were you I would consider staying on Tapazole until you achieve remission or I'd consider having surgery, that is, a partial thyroidectomy. Several people on ATDs have mentioned that they didn't begin to get well and achieve remission until they made lifestyle changes, particularly dietary interventions and stress reduction. Good luck with whatever option you decide on, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, After RAI, your symptoms of hyperthyroidism generally become temporarily worse because of thyroid hormone and antibodies being released from dying thyroid cells. You may also experience a sore throat from the radiation thyroiditis. You will also be at risk for developing thyroid storm for about 6 weeks. As you become hypothyroid you may experience severe muscle pain, especially in the large muscles of the back and thighs. You may also experience muscle swelling since the muscle fibers changes, looking strong although they become weak (Hoffman's syndrome). Other common symptoms of hypothyroidism include weight gain, depression, goiter, constipation, dry skin and hair and mental fog. When you become severely hypothyroid, you can develop myxedema coma after 6 weeks without thyroid hormone so you need to watch out for symptoms. RAI also increases your risk of developing Graves' ophthalmopathy and primary myxedema because of the released thyroid antibodies and immune system stimulation. Because of the fluctuating antibody levels, it can take quite some time to regulate your thyroid hormone levels. Twelve years after RAI, I still have thyroid antibodies and my thyroid hormone levels are still constantly changing. My dose of replacement hormone was again changed last week. People who become hypothyroid are more likely to experience permanent weight gain, and it's not unusual to gain up to 50 pounds within the first two years. People who have RAI report continuing Graves' rage which could be attributed to the antibody levels. Until the immune system dysfunction that causes Graves' disease is addressed, you're at risk for developing other autoimmune disorders, particularly fibromyalgia. Other organs may be affected by RAI causing digestive problems and reproductive problems. If I were you I would consider staying on Tapazole until you achieve remission or I'd consider having surgery, that is, a partial thyroidectomy. Several people on ATDs have mentioned that they didn't begin to get well and achieve remission until they made lifestyle changes, particularly dietary interventions and stress reduction. Good luck with whatever option you decide on, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, After RAI, your symptoms of hyperthyroidism generally become temporarily worse because of thyroid hormone and antibodies being released from dying thyroid cells. You may also experience a sore throat from the radiation thyroiditis. You will also be at risk for developing thyroid storm for about 6 weeks. As you become hypothyroid you may experience severe muscle pain, especially in the large muscles of the back and thighs. You may also experience muscle swelling since the muscle fibers changes, looking strong although they become weak (Hoffman's syndrome). Other common symptoms of hypothyroidism include weight gain, depression, goiter, constipation, dry skin and hair and mental fog. When you become severely hypothyroid, you can develop myxedema coma after 6 weeks without thyroid hormone so you need to watch out for symptoms. RAI also increases your risk of developing Graves' ophthalmopathy and primary myxedema because of the released thyroid antibodies and immune system stimulation. Because of the fluctuating antibody levels, it can take quite some time to regulate your thyroid hormone levels. Twelve years after RAI, I still have thyroid antibodies and my thyroid hormone levels are still constantly changing. My dose of replacement hormone was again changed last week. People who become hypothyroid are more likely to experience permanent weight gain, and it's not unusual to gain up to 50 pounds within the first two years. People who have RAI report continuing Graves' rage which could be attributed to the antibody levels. Until the immune system dysfunction that causes Graves' disease is addressed, you're at risk for developing other autoimmune disorders, particularly fibromyalgia. Other organs may be affected by RAI causing digestive problems and reproductive problems. If I were you I would consider staying on Tapazole until you achieve remission or I'd consider having surgery, that is, a partial thyroidectomy. Several people on ATDs have mentioned that they didn't begin to get well and achieve remission until they made lifestyle changes, particularly dietary interventions and stress reduction. Good luck with whatever option you decide on, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, Welcome to this group. Your asking good questions before going through this process, the best time to ask. Your right about destroying your thyroid. The thyroid is not what is sick, it is our immune systems that have gone haywire, the only thing RAI will address is killing the thyroid, it does NOT address the autoimmune nature of this disease. I have a couple of posts of my experience since having RAI from the day I took it and what it has cost me. I am not a proponent of RAI, I believe in my heart and in my research that RAI is barbaric and should be outlawed. Many people don't have problems until more than 5 years after having RAI, my problems started 6 weeks after having it and continue today, 6 years post RAI...and now, I take hormone replacement because my thyroid can't make enough, it is still dying but not yet dead completely...AND I am on PTU to lower my TSI autoantibodies to improve my eyes. RAI often worsens or brings on the eye disease that goes with graves...the same antibodies that invade and attack our thyroids also can begin an attack on our eyes. The eye thing has been horrible and terrifying for me but PTU (one of the ATD's like Tap) has helped them improve a great deal. Somehow I feel cheated, I put that poison nuclear waste into my body, and six years later I am back on atd's...just doesn't seem fair. It is never to late to change your mind, until you swallow that pill, once that is done, there is no going back. If you would like to read my RAI posts, e-mail me at luckystrike@ hotmail.com...no space though. If I don't do it like this, the full address is removed from the post. There are many people in this group who have taken atd's long term and are doing great, with their thyroids in tact and making hormone. I recently met a woman who has been on them for 20 years! So taking it long term is not a problem for many people...with RAI you will be trading taking one kind of pill a day for another kind of pill, the one you have to take after RAI can and often does take years and years of trying to find the right dose, so we end up hypo. Take your time, read, and maybe rethink your decision. If you do go ahead with it, we are all here to support you...no matter which treatment you decide. Take care, 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 April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, Welcome to this group. Your asking good questions before going through this process, the best time to ask. Your right about destroying your thyroid. The thyroid is not what is sick, it is our immune systems that have gone haywire, the only thing RAI will address is killing the thyroid, it does NOT address the autoimmune nature of this disease. I have a couple of posts of my experience since having RAI from the day I took it and what it has cost me. I am not a proponent of RAI, I believe in my heart and in my research that RAI is barbaric and should be outlawed. Many people don't have problems until more than 5 years after having RAI, my problems started 6 weeks after having it and continue today, 6 years post RAI...and now, I take hormone replacement because my thyroid can't make enough, it is still dying but not yet dead completely...AND I am on PTU to lower my TSI autoantibodies to improve my eyes. RAI often worsens or brings on the eye disease that goes with graves...the same antibodies that invade and attack our thyroids also can begin an attack on our eyes. The eye thing has been horrible and terrifying for me but PTU (one of the ATD's like Tap) has helped them improve a great deal. Somehow I feel cheated, I put that poison nuclear waste into my body, and six years later I am back on atd's...just doesn't seem fair. It is never to late to change your mind, until you swallow that pill, once that is done, there is no going back. If you would like to read my RAI posts, e-mail me at luckystrike@ hotmail.com...no space though. If I don't do it like this, the full address is removed from the post. There are many people in this group who have taken atd's long term and are doing great, with their thyroids in tact and making hormone. I recently met a woman who has been on them for 20 years! So taking it long term is not a problem for many people...with RAI you will be trading taking one kind of pill a day for another kind of pill, the one you have to take after RAI can and often does take years and years of trying to find the right dose, so we end up hypo. Take your time, read, and maybe rethink your decision. If you do go ahead with it, we are all here to support you...no matter which treatment you decide. Take care, 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 April 10, 2002 Report Share Posted April 10, 2002 Hi Anne, Welcome to this group. Your asking good questions before going through this process, the best time to ask. Your right about destroying your thyroid. The thyroid is not what is sick, it is our immune systems that have gone haywire, the only thing RAI will address is killing the thyroid, it does NOT address the autoimmune nature of this disease. I have a couple of posts of my experience since having RAI from the day I took it and what it has cost me. I am not a proponent of RAI, I believe in my heart and in my research that RAI is barbaric and should be outlawed. Many people don't have problems until more than 5 years after having RAI, my problems started 6 weeks after having it and continue today, 6 years post RAI...and now, I take hormone replacement because my thyroid can't make enough, it is still dying but not yet dead completely...AND I am on PTU to lower my TSI autoantibodies to improve my eyes. RAI often worsens or brings on the eye disease that goes with graves...the same antibodies that invade and attack our thyroids also can begin an attack on our eyes. The eye thing has been horrible and terrifying for me but PTU (one of the ATD's like Tap) has helped them improve a great deal. Somehow I feel cheated, I put that poison nuclear waste into my body, and six years later I am back on atd's...just doesn't seem fair. It is never to late to change your mind, until you swallow that pill, once that is done, there is no going back. If you would like to read my RAI posts, e-mail me at luckystrike@ hotmail.com...no space though. If I don't do it like this, the full address is removed from the post. There are many people in this group who have taken atd's long term and are doing great, with their thyroids in tact and making hormone. I recently met a woman who has been on them for 20 years! So taking it long term is not a problem for many people...with RAI you will be trading taking one kind of pill a day for another kind of pill, the one you have to take after RAI can and often does take years and years of trying to find the right dose, so we end up hypo. Take your time, read, and maybe rethink your decision. If you do go ahead with it, we are all here to support you...no matter which treatment you decide. Take care, 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 April 11, 2002 Report Share Posted April 11, 2002 HI Elaine If I am reading you right the thyroid antibodies continue to be produced after RAI. I know from your website that there are different types of antibodies but could you please clarify which are the ones which could cause GO? Are the ones which cause other symptoms the same ones as causes GO? Or perhaps it's not so cut & dried. I seeing my GP tomorrow to get bloodtest results & my consultant on Monday who will have antibody tests results we did 5 weeks ago. I want to have an informed discussion with my consultant about the antibodies - if there are any- & what will happen to these with RAI. Thanks Elaine Re: RAI treatment Hi Anne, After RAI, your symptoms of hyperthyroidism generally become temporarily worse because of thyroid hormone and antibodies being released from dying thyroid cells. You may also experience a sore throat from the radiation thyroiditis. You will also be at risk for developing thyroid storm for about 6 weeks. As you become hypothyroid you may experience severe muscle pain, especially in the large muscles of the back and thighs. You may also experience muscle swelling since the muscle fibers changes, looking strong although they become weak (Hoffman's syndrome). Other common symptoms of hypothyroidism include weight gain, depression, goiter, constipation, dry skin and hair and mental fog. When you become severely hypothyroid, you can develop myxedema coma after 6 weeks without thyroid hormone so you need to watch out for symptoms. RAI also increases your risk of developing Graves' ophthalmopathy and primary myxedema because of the released thyroid antibodies and immune system stimulation. Because of the fluctuating antibody levels, it can take quite some time to regulate your thyroid hormone levels. Twelve years after RAI, I still have thyroid antibodies and my thyroid hormone levels are still constantly changing. My dose of replacement hormone was again changed last week. People who become hypothyroid are more likely to experience permanent weight gain, and it's not unusual to gain up to 50 pounds within the first two years. People who have RAI report continuing Graves' rage which could be attributed to the antibody levels. Until the immune system dysfunction that causes Graves' disease is addressed, you're at risk for developing other autoimmune disorders, particularly fibromyalgia. Other organs may be affected by RAI causing digestive problems and reproductive problems. If I were you I would consider staying on Tapazole until you achieve remission or I'd consider having surgery, that is, a partial thyroidectomy. Several people on ATDs have mentioned that they didn't begin to get well and achieve remission until they made lifestyle changes, particularly dietary interventions and stress reduction. Good luck with whatever option you decide on, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 HI Elaine If I am reading you right the thyroid antibodies continue to be produced after RAI. I know from your website that there are different types of antibodies but could you please clarify which are the ones which could cause GO? Are the ones which cause other symptoms the same ones as causes GO? Or perhaps it's not so cut & dried. I seeing my GP tomorrow to get bloodtest results & my consultant on Monday who will have antibody tests results we did 5 weeks ago. I want to have an informed discussion with my consultant about the antibodies - if there are any- & what will happen to these with RAI. Thanks Elaine Re: RAI treatment Hi Anne, After RAI, your symptoms of hyperthyroidism generally become temporarily worse because of thyroid hormone and antibodies being released from dying thyroid cells. You may also experience a sore throat from the radiation thyroiditis. You will also be at risk for developing thyroid storm for about 6 weeks. As you become hypothyroid you may experience severe muscle pain, especially in the large muscles of the back and thighs. You may also experience muscle swelling since the muscle fibers changes, looking strong although they become weak (Hoffman's syndrome). Other common symptoms of hypothyroidism include weight gain, depression, goiter, constipation, dry skin and hair and mental fog. When you become severely hypothyroid, you can develop myxedema coma after 6 weeks without thyroid hormone so you need to watch out for symptoms. RAI also increases your risk of developing Graves' ophthalmopathy and primary myxedema because of the released thyroid antibodies and immune system stimulation. Because of the fluctuating antibody levels, it can take quite some time to regulate your thyroid hormone levels. Twelve years after RAI, I still have thyroid antibodies and my thyroid hormone levels are still constantly changing. My dose of replacement hormone was again changed last week. People who become hypothyroid are more likely to experience permanent weight gain, and it's not unusual to gain up to 50 pounds within the first two years. People who have RAI report continuing Graves' rage which could be attributed to the antibody levels. Until the immune system dysfunction that causes Graves' disease is addressed, you're at risk for developing other autoimmune disorders, particularly fibromyalgia. Other organs may be affected by RAI causing digestive problems and reproductive problems. If I were you I would consider staying on Tapazole until you achieve remission or I'd consider having surgery, that is, a partial thyroidectomy. Several people on ATDs have mentioned that they didn't begin to get well and achieve remission until they made lifestyle changes, particularly dietary interventions and stress reduction. Good luck with whatever option you decide on, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi , Both TSI (thyroid stimulating immunoglobulins, also known as stimulating TSH receptor antibodies) and blocking TSH receptor antibodies are associated with GO. TSI are the ones that cause hyperthyroidism as well. However, several recent studies indicate that people who have both blocking and stimulating TSH antibodies are much more likely to develop GO, and that blocking TRAb are the definitive factor. If you go to Pub Med, http://www4.ncbi.nlm.nih.gov/PubMed/ you can do a search on blocking TSH receptor antibodies and find several abstracts. One recent one is " Clinical Significance of Classification of Graves' Disease According to the Characteristics of TSH Receptor Antibodies, " by WB Kim, HK Chung, YJ Park, DK Park, HK Lee and BY Cho, from the Korean J International Mediicine, Sept. 2001. After RAI, thyroid antibody levels increase for two reasons: 1) they are released from dying thyroid cells; 2) Immune system cells in the thyroid gland are stimulated by RAI since they perceive it as a foreign threat; consequently, they step up their production of thyroid antibodies. Even if someone doesn't initially have blocking TSH receptor antibodies, they can begin producing them after RAI. In most cases the increase in antibody titers persists for about a year, but there are reports of high titers persisting for as long as 10 years. Blocking TSH receptor antibodies can also spontaneously develop even without RAI (at some point in the future) as part of the disease process if the immune system is still dysfunctional. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi , Both TSI (thyroid stimulating immunoglobulins, also known as stimulating TSH receptor antibodies) and blocking TSH receptor antibodies are associated with GO. TSI are the ones that cause hyperthyroidism as well. However, several recent studies indicate that people who have both blocking and stimulating TSH antibodies are much more likely to develop GO, and that blocking TRAb are the definitive factor. If you go to Pub Med, http://www4.ncbi.nlm.nih.gov/PubMed/ you can do a search on blocking TSH receptor antibodies and find several abstracts. One recent one is " Clinical Significance of Classification of Graves' Disease According to the Characteristics of TSH Receptor Antibodies, " by WB Kim, HK Chung, YJ Park, DK Park, HK Lee and BY Cho, from the Korean J International Mediicine, Sept. 2001. After RAI, thyroid antibody levels increase for two reasons: 1) they are released from dying thyroid cells; 2) Immune system cells in the thyroid gland are stimulated by RAI since they perceive it as a foreign threat; consequently, they step up their production of thyroid antibodies. Even if someone doesn't initially have blocking TSH receptor antibodies, they can begin producing them after RAI. In most cases the increase in antibody titers persists for about a year, but there are reports of high titers persisting for as long as 10 years. Blocking TSH receptor antibodies can also spontaneously develop even without RAI (at some point in the future) as part of the disease process if the immune system is still dysfunctional. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 HI Elaine thanks for that - I will take your message to my consultant on monday if you don't mind. Re: RAI treatment Hi , Both TSI (thyroid stimulating immunoglobulins, also known as stimulating TSH receptor antibodies) and blocking TSH receptor antibodies are associated with GO. TSI are the ones that cause hyperthyroidism as well. However, several recent studies indicate that people who have both blocking and stimulating TSH antibodies are much more likely to develop GO, and that blocking TRAb are the definitive factor. If you go to Pub Med, http://www4.ncbi.nlm.nih.gov/PubMed/ you can do a search on blocking TSH receptor antibodies and find several abstracts. One recent one is " Clinical Significance of Classification of Graves' Disease According to the Characteristics of TSH Receptor Antibodies, " by WB Kim, HK Chung, YJ Park, DK Park, HK Lee and BY Cho, from the Korean J International Mediicine, Sept. 2001. After RAI, thyroid antibody levels increase for two reasons: 1) they are released from dying thyroid cells; 2) Immune system cells in the thyroid gland are stimulated by RAI since they perceive it as a foreign threat; consequently, they step up their production of thyroid antibodies. Even if someone doesn't initially have blocking TSH receptor antibodies, they can begin producing them after RAI. In most cases the increase in antibody titers persists for about a year, but there are reports of high titers persisting for as long as 10 years. Blocking TSH receptor antibodies can also spontaneously develop even without RAI (at some point in the future) as part of the disease process if the immune system is still dysfunctional. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Hi , If you have time, go to Pub Med too and try to print out some abstracts. then your doc can get copies of the entire articles if they're interested. Good luck with your appointment, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Hi , If you have time, go to Pub Med too and try to print out some abstracts. then your doc can get copies of the entire articles if they're interested. Good luck with your appointment, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Hi , If you have time, go to Pub Med too and try to print out some abstracts. then your doc can get copies of the entire articles if they're interested. Good luck with your appointment, elaine Quote Link to comment Share on other sites More sharing options...
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