Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi , Welcome!!! One concern I have is that besides the thyroid, there are other reasons too, why your menstrual cycle could have stopped. Did your GYN check for fibroids or cysts, etc. too? Did you have an ultrasound etc.? Just to make sure that is not interfering also. I am in the same predicament as you, with having surgery. I am also very nervous. I had an allergic reaction to tapezole because I am allergic to sulpha. All the hyper medicines have sulpha so I can't take them. Surgery is the next step for me. I am sort of in a catch 22, with mine. They want to do a full thyroidectomy, I would rather have some thyroid left. My problem is that because I have nodules, any nodules on the part that is left would possibly grow and require a second surgery. Or maybe they wouldn't grow. I would have to make sure the surgery is done in a way that if it became necessary, I could have a second surgery. If I have a full thyroidectomy, I have the same concern as you going completely hypo, and have to take hypo medicines. My sister gained an awful amout of weight from synthroid and Amour. I am worried for the fact, what if I have a reaction to them, I don't do to good with any medicine. Then I am in trouble!! This decision with surgery will affect the rest of my life so, the delima goes on. I too, get depressed on and off trying to figure it out. It is really tough. You definately are not alone! One thing I know is that I will not go near an operating room until I feel extremely confident and comfortable with my surgeon and what will happen!!! If an emergency were to arise, like if I went into Thyroid Storm or something (which likely won't be the case) my husband knows to tell them to do a sub-total and make sure that it is done in a way that it can be redone, and to check the surgeon to make sure he is an expert. I am at least to that point, I figure once it is taken out, it can't be put back, so, try that first. I feel for you, I know what you are going thru. You came to the right place for information! The people are so supportive and we all will answer any questions that we can! Again, Welcome!!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi , Welcome!!! One concern I have is that besides the thyroid, there are other reasons too, why your menstrual cycle could have stopped. Did your GYN check for fibroids or cysts, etc. too? Did you have an ultrasound etc.? Just to make sure that is not interfering also. I am in the same predicament as you, with having surgery. I am also very nervous. I had an allergic reaction to tapezole because I am allergic to sulpha. All the hyper medicines have sulpha so I can't take them. Surgery is the next step for me. I am sort of in a catch 22, with mine. They want to do a full thyroidectomy, I would rather have some thyroid left. My problem is that because I have nodules, any nodules on the part that is left would possibly grow and require a second surgery. Or maybe they wouldn't grow. I would have to make sure the surgery is done in a way that if it became necessary, I could have a second surgery. If I have a full thyroidectomy, I have the same concern as you going completely hypo, and have to take hypo medicines. My sister gained an awful amout of weight from synthroid and Amour. I am worried for the fact, what if I have a reaction to them, I don't do to good with any medicine. Then I am in trouble!! This decision with surgery will affect the rest of my life so, the delima goes on. I too, get depressed on and off trying to figure it out. It is really tough. You definately are not alone! One thing I know is that I will not go near an operating room until I feel extremely confident and comfortable with my surgeon and what will happen!!! If an emergency were to arise, like if I went into Thyroid Storm or something (which likely won't be the case) my husband knows to tell them to do a sub-total and make sure that it is done in a way that it can be redone, and to check the surgeon to make sure he is an expert. I am at least to that point, I figure once it is taken out, it can't be put back, so, try that first. I feel for you, I know what you are going thru. You came to the right place for information! The people are so supportive and we all will answer any questions that we can! Again, Welcome!!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi , Welcome to the group! Do you get copies of all of your lab work? If not, I would highly suggest you call and request copies of your labs from diagnosis to the present. There is a Lab Tracker under files from the home page that is a handy little thing to see exactly what roller coaster ride you have been on. Keeping copies of our labs is probably the number one thing we do for ourselves. Many of us make a note of how we feel, symptoms and overall on the day we have labs drawn, then when we get our copies attach that right to it. As we feel better, it will help us to find *our* own target level regarding labs where we feel good. All of us have different set points for this. Also sharing your labs in group, Elaine can help explain them to you so much more clearly than any paper, or any doctor (in my opinion). If you don't have a copy of Graves Disease; A Practical Guide by Elaine , you would be making a wise investment here. You can get it at amazon.com or barnesandnoble.com. At barnes you can get it 20% discounted, and if you buy more than one item, free shipping. If you go that way, and look for another book, The Thyroid Solution by Dr. Ridha Arems will explain a lot of the emotional and mental toil this disease can take on us. The fact that your doctor is calling for surgery, rather than RAI is a GREAT thing! To read a wonderful story in archives, go to the home page, click on message, then use the search engine at the top of the page and type in and reac Caroline's story. It starts in September of 2000, she shares her thoughts, her reactions to treatments, her decision making, opting for surgery, a sub-total and why she choose that, her surgery, her recovery, and she was pregnant one month later! Beautiful Dylan was born August of 2001 and she is now expecting another little miracle. She just updated us on how she is doing, and her graves is still in remission. So if you have to go that way, Caroline's journey is one that will remove much of the fear for you. Your doctor saying she will only do totals makes me think of my endo, do you happen to be near the Buffalo, NY area and are her intials MF? My endo says the same thing, but if I were faced with a total or sub-total, I would insist on the sub and take my chances on getting hyper again...I believe the statistics are very low. I will leave others to remark on the tap, ptu, your doses and reaction...hope some of this info will be helpful for you, Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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 April 17, 2002 Report Share Posted April 17, 2002 Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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 April 17, 2002 Report Share Posted April 17, 2002 Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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 April 17, 2002 Report Share Posted April 17, 2002 --- Willis wrote: > > Hello. My name is and I am a new member to > this group. I would like to share a little bit of > my story to see what opinions others may have on it. > > I was diagnosed with hyperT/Graves Disease in > November 2001. I also have thyroid related eye > problems. The symptom that brought me to the doctor > was the lack of a menstrual cycle for several months > after I stopped taking birth control pills. At my > first appointment it was noticed that my left eye > bulged out. I was put on PTU, 12 pills a day > because my levels were extremely high. When my > levels didn't move much, the dose was increased - I > was now taking 15 pills a day! About one week after > this increase, I developed a full-body rash, an > allergy to the PTU. Was was then put on Tapazole > and am still on that. I take 40mg per day. Note: > my levels have gone down, just not significantly. > > As my husband and I are thinking about having > children and would like to start tyring this winter, > my endo has said that if my levels have not > decreased signifcantly with my next labs, next week, > she would like me to consider surgery. Since there > is a chance of any remaining thyroid becoming > overactive again, hyper, she would like to remove > the whole gland. > > Since the treatment with ATDs started, approximately > 5 months ago, I have gained 25 pounds. I have still > not had a period. If I have the whole gland is > removed I will be permanently hypo. What size house > would I become then?! I am becoming very depressed. > Any suggestions or opinions that anyone could offer > would be greatly appreciated. I know I'm not the > only one out there with these issues and that is > comforting. > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Thanks for your response. The first place I went when I stopped having periods was my OB/GYN where she checked me out, however, she didn't perform an ultrasound. My endo also wants to do a total thyroidectomy because of the possiblity of becoming hyerT again, not because I have nodules, which I do not. I feel the same way you do in that I have to wonder, " What if I cannot take the hypo meds and what if I become obese? " I will update everyone once I get back from my next appointment. Also, at the suggestion of others, I have requested copies of all of my lab work so that I can keep a file of them and keep track of what is going on. Is that something you have done? Those that have done it say it is very useful and that they also post some of their results to get feedback from others on, so if you haven't already done so, you might want to do the same. Thanks again, jacksue7@... wrote: Hi , Welcome!!! One concern I have is that besides the thyroid, there are other reasons too, why your menstrual cycle could have stopped. Did your GYN check for fibroids or cysts, etc. too? Did you have an ultrasound etc.? Just to make sure that is not interfering also. I am in the same predicament as you, with having surgery. I am also very nervous. I had an allergic reaction to tapezole because I am allergic to sulpha. All the hyper medicines have sulpha so I can't take them. Surgery is the next step for me. I am sort of in a catch 22, with mine. They want to do a full thyroidectomy, I would rather have some thyroid left. My problem is that because I have nodules, any nodules on the part that is left would possibly grow and require a second surgery. Or maybe they wouldn't grow. I would have to make sure the surgery is done in a way that if it became necessary, I could have a second surgery. If I have a full thyroidectomy, I have the same concern as you going completely hypo, and have to take hypo medicines. My sister gained an awful amount of weight from synthroid and Amour. I am worried for the fact, what if I have a reaction to them, I don't do to good with any medicine. Then I am in trouble!! This decision with surgery will affect the rest of my life so, the dilema goes on. I too, get depressed on and off trying to figure it out. It is really tough. You definately are not alone! One thing I know is that I will not go near an operating room until I feel extremely confident and comfortable with my surgeon and what will happen!!! If an emergency were to arise, like if I went into Thyroid Storm or something (which likely won't be the case) my husband knows to tell them to do a sub-total and make sure that it is done in a way that it can be redone, and to check the surgeon to make sure he is an expert. I am at least to that point, I figure once it is taken out, it can't be put back, so, try that first. I feel for you, I know what you are going thru. You came to the right place for information! The people are so supportive and we all will answer any questions that we can! Again, Welcome!!!! Deb ------------------------------------- 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 17, 2002 Report Share Posted April 17, 2002 Hi Deb, I just read this post and was concerned about the allergy to Sulfa. I am extremely allergic to Sulfa. I haven't seen my Endo yet, the appt is May 17th. So what ATD can they give me, do they all have Sulfa in them? Yikes. Thanks for your help. Randa Re: New member post Hi , Welcome!!! One concern I have is that besides the thyroid, there are other reasons too, why your menstrual cycle could have stopped. Did your GYN check for fibroids or cysts, etc. too? Did you have an ultrasound etc.? Just to make sure that is not interfering also. I am in the same predicament as you, with having surgery. I am also very nervous. I had an allergic reaction to tapezole because I am allergic to sulpha. All the hyper medicines have sulpha so I can't take them. Surgery is the next step for me. I am sort of in a catch 22, with mine. They want to do a full thyroidectomy, I would rather have some thyroid left. My problem is that because I have nodules, any nodules on the part that is left would possibly grow and require a second surgery. Or maybe they wouldn't grow. I would have to make sure the surgery is done in a way that if it became necessary, I could have a second surgery. If I have a full thyroidectomy, I have the same concern as you going completely hypo, and have to take hypo medicines. My sister gained an awful amout of weight from synthroid and Amour. I am worried for the fact, what if I have a reaction to them, I don't do to good with any medicine. Then I am in trouble!! This decision with surgery will affect the rest of my life so, the delima goes on. I too, get depressed on and off trying to figure it out. It is really tough. You definately are not alone! One thing I know is that I will not go near an operating room until I feel extremely confident and comfortable with my surgeon and what will happen!!! If an emergency were to arise, like if I went into Thyroid Storm or something (which likely won't be the case) my husband knows to tell them to do a sub-total and make sure that it is done in a way that it can be redone, and to check the surgeon to make sure he is an expert. I am at least to that point, I figure once it is taken out, it can't be put back, so, try that first. I feel for you, I know what you are going thru. You came to the right place for information! The people are so supportive and we all will answer any questions that we can! Again, Welcome!!!! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi , I'm glad you found the group. Hopefully, Caroline will see this and have some advice for you. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi , I'm glad you found the group. Hopefully, Caroline will see this and have some advice for you. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Hi pmmmnb (What's your name?) Welcome to the group and it's interesting to read your post! You sound like you are in dire need of a qualified endocrinologist (maybe the one you have IS good?) and it seems you are more educated as a " newbie " to this group than I was at least when I joined! My thoughts: I think surgery is a viable option for you to consider, but that is only because many people in the group have advocated this procedure. I am suspicious in my limited knowledge as to why you've gained so much weight. With all of the PTU you were taking and your new meds, have you had thyroid tests run -- and how recently have you had your relevant levels checked? As far as the depression goes, my Joe went through that when extremely hyper. I have gathered from the list that this is a symptom of hypo as well. You need testing of your thyroid levels! We're all here to support you and welcome you! I am a novice when it comes to all of this, so I can only offer what I have offered in return. My best to you, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Hi Welcome to the group. I hope you are feeling a bit more encouraged. As Jody and Elaine have mentioned I was faced with this dilemma last in 2000. Please look at the archives under to see my full story (I posted almost every step of the way while making decisions and was so fortunate to have this group to help me through it - thanks guys). My surgeon wanted to do a total for the same reasons as yours. I told him no way I wanted some natural thyroid left. Anyway if I became hyper again it could take up to 6 years to need treatment and I would use meds then as I wouldn't want to be having children by then. He agreed and I have never looked back since. My Graves is in remission and I have a beautiful 8 month old son with another on the way. All the best and good luck with your research Cheers Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Hi Welcome to the group. I hope you are feeling a bit more encouraged. As Jody and Elaine have mentioned I was faced with this dilemma last in 2000. Please look at the archives under to see my full story (I posted almost every step of the way while making decisions and was so fortunate to have this group to help me through it - thanks guys). My surgeon wanted to do a total for the same reasons as yours. I told him no way I wanted some natural thyroid left. Anyway if I became hyper again it could take up to 6 years to need treatment and I would use meds then as I wouldn't want to be having children by then. He agreed and I have never looked back since. My Graves is in remission and I have a beautiful 8 month old son with another on the way. All the best and good luck with your research Cheers Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Thanks for the welcome. The reason my doctor is not pushing RAI is because of the thyroid eye disease I have. She says that RAI can sometimes make the eyes worse and she doesn't want to push it with them. As far as " how fast my clock is ticking " , I assume you are talking about the biological/maternal one, right? Well, it is ticking but it isn't gonging, so to speak. If I can get pregnant in the next two years that would be okay with me. I am currently on Tapazole (40 mg) and I'm going to see what that is doing for me with my next labs. I have not looked into seeing a reproductive endo. I'll have to look to see if there are any in my area. Anyone know of a reputable one in land? What is PCOS? 15 pills of PTU is around 750 mg and I was taking 5 pills 3 times a day F Young wrote: Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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/. ------------------------------------- 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 18, 2002 Report Share Posted April 18, 2002 Thanks for the welcome. The reason my doctor is not pushing RAI is because of the thyroid eye disease I have. She says that RAI can sometimes make the eyes worse and she doesn't want to push it with them. As far as " how fast my clock is ticking " , I assume you are talking about the biological/maternal one, right? Well, it is ticking but it isn't gonging, so to speak. If I can get pregnant in the next two years that would be okay with me. I am currently on Tapazole (40 mg) and I'm going to see what that is doing for me with my next labs. I have not looked into seeing a reproductive endo. I'll have to look to see if there are any in my area. Anyone know of a reputable one in land? What is PCOS? 15 pills of PTU is around 750 mg and I was taking 5 pills 3 times a day F Young wrote: Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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/. ------------------------------------- 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 18, 2002 Report Share Posted April 18, 2002 Thanks for the welcome. The reason my doctor is not pushing RAI is because of the thyroid eye disease I have. She says that RAI can sometimes make the eyes worse and she doesn't want to push it with them. As far as " how fast my clock is ticking " , I assume you are talking about the biological/maternal one, right? Well, it is ticking but it isn't gonging, so to speak. If I can get pregnant in the next two years that would be okay with me. I am currently on Tapazole (40 mg) and I'm going to see what that is doing for me with my next labs. I have not looked into seeing a reproductive endo. I'll have to look to see if there are any in my area. Anyone know of a reputable one in land? What is PCOS? 15 pills of PTU is around 750 mg and I was taking 5 pills 3 times a day F Young wrote: Welcome . One thing you have going for you is that your dr.'s not pushing RAI. You didn't mention how fast " your clock is ticking " but if you have time you may want to give Tap a try. Ideally, you would find your levels going down and your dr. would reduce your Tap in gentle increments -2.5 - 5 milligrams every 6-8 weeks - and you might find yourself in remission within a year. After that, you may want to wait a few months to see if you're stable in which case you could feel comfortable going for a pregnancy. Do you go to a reproductive endo, or are there any in your area? If you're able to tolerate ATD's and find yourself progressing well I would be inclined to push off surgery and figure out what's going on with your periods. Have you looked into PCOS? About the weight gain: I wish I could give you a magic bullet. All I can say is, my experience this spring would make a really interesting article -building a workable plus size wardrobe for peanuts. I try to be philosophical. The major thing is your health - take calcium and exercise, even if only gently, regularly. I have a question for the group. I don't know how much 15 pills of PTU is. Is that like upwards of 40 mg. of Tap? Does taking an unwarranted high dose trigger allergic reactions and if so might it be possible to resume that ATD on a lower dose? 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/. ------------------------------------- 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 18, 2002 Report Share Posted April 18, 2002 I have requested copies of my labs. I actually live in land so we couldn't possibly be using the same endo. She hasn't said that she only does totals but thinks in my case that would be a good idea. As I read these posts, I have decided that I am probably going to suggest a sub-total if and when we go for surgery. Right now I'm going to suggest that she continue to treat me with ATDs for a while longer, since it has only been 5 months. Maybe with time, my levels will level out. Jody Spitale wrote: Hi , Welcome to the group! Do you get copies of all of your lab work? If not, I would highly suggest you call and request copies of your labs from diagnosis to the present. There is a Lab Tracker under files from the home page that is a handy little thing to see exactly what roller coaster ride you have been on. Keeping copies of our labs is probably the number one thing we do for ourselves. Many of us make a note of how we feel, symptoms and overall on the day we have labs drawn, then when we get our copies attach that right to it. As we feel better, it will help us to find *our* own target level regarding labs where we feel good. All of us have different set points for this. Also sharing your labs in group, Elaine can help explain them to you so much more clearly than any paper, or any doctor (in my opinion). If you don't have a copy of Graves Disease; A Practical Guide by Elaine , you would be making a wise investment here. You can get it at amazon.com or barnesandnoble.com. At barnes you can get it 20% discounted, and if you buy more than one item, free shipping. If you go that way, and look for another book, The Thyroid Solution by Dr. Ridha Arems will explain a lot of the emotional and mental toil this disease can take on us. The fact that your doctor is calling for surgery, rather than RAI is a GREAT thing! To read a wonderful story in archives, go to the home page, click on message, then use the search engine at the top of the page and type in and reac Caroline's story. It starts in September of 2000, she shares her thoughts, her reactions to treatments, her decision making, opting for surgery, a sub-total and why she choose that, her surgery, her recovery, and she was pregnant one month later! Beautiful Dylan was born August of 2001 and she is now expecting another little miracle. She just updated us on how she is doing, and her graves is still in remission. So if you have to go that way, Caroline's journey is one that will remove much of the fear for you. Your doctor saying she will only do totals makes me think of my endo, do you happen to be near the Buffalo, NY area and are her intials MF? My endo says the same thing, but if I were faced with a total or sub-total, I would insist on the sub and take my chances on getting hyper again...I believe the statistics are very low. I will leave others to remark on the tap, ptu, your doses and reaction...hope some of this info will be helpful for you, Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com ------------------------------------- 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 18, 2002 Report Share Posted April 18, 2002 Thanks for the response. My name is , I hail from land and am hyperT. I haven't developed any problems with the endo I am currently using, although the future remains to be seen. She is very open to the concerns I have and to discuss what my options are. I have tried to educate myself on the subject so that I could have intelligent conversations with the doctor. It has helped and it helps me even more that I have joined some great support groups. LlBuddha@... wrote: Hi pmmmnb (What's your name?) Welcome to the group and it's interesting to read your post! You sound like you are in dire need of a qualified endocrinologist (maybe the one you have IS good?) and it seems you are more educated as a " newbie " to this group than I was at least when I joined! My thoughts: I think surgery is a viable option for you to consider, but that is only because many people in the group have advocated this procedure. I am suspicious in my limited knowledge as to why you've gained so much weight. With all of the PTU you were taking and your new meds, have you had thyroid tests run -- and how recently have you had your relevant levels checked? As far as the depression goes, my Joe went through that when extremely hyper. I have gathered from the list that this is a symptom of hypo as well. You need testing of your thyroid levels! We're all here to support you and welcome you! I am a novice when it comes to all of this, so I can only offer what I have offered in return. My best to you, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Thanks for the response. My name is , I hail from land and am hyperT. I haven't developed any problems with the endo I am currently using, although the future remains to be seen. She is very open to the concerns I have and to discuss what my options are. I have tried to educate myself on the subject so that I could have intelligent conversations with the doctor. It has helped and it helps me even more that I have joined some great support groups. LlBuddha@... wrote: Hi pmmmnb (What's your name?) Welcome to the group and it's interesting to read your post! You sound like you are in dire need of a qualified endocrinologist (maybe the one you have IS good?) and it seems you are more educated as a " newbie " to this group than I was at least when I joined! My thoughts: I think surgery is a viable option for you to consider, but that is only because many people in the group have advocated this procedure. I am suspicious in my limited knowledge as to why you've gained so much weight. With all of the PTU you were taking and your new meds, have you had thyroid tests run -- and how recently have you had your relevant levels checked? As far as the depression goes, my Joe went through that when extremely hyper. I have gathered from the list that this is a symptom of hypo as well. You need testing of your thyroid levels! We're all here to support you and welcome you! I am a novice when it comes to all of this, so I can only offer what I have offered in return. My best to you, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Believe it or not, there are endos who will still promote RAI when a TED is clearly manifest! PCOS is an endocrine problem that affects the ovaries - it stands for polycystic ovarian syndrome. As someone else advised, there are other GYN things to check out also, like fibroids. Many, but not all, women with PCOS are hypo; many, but not all, will have heavy frequent periods. However, some women are hyper and/or have fewer, lighter periods - something to bear in mind if your dr. rules it out because of the Graves. Take care, 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 April 18, 2002 Report Share Posted April 18, 2002 Believe it or not, there are endos who will still promote RAI when a TED is clearly manifest! PCOS is an endocrine problem that affects the ovaries - it stands for polycystic ovarian syndrome. As someone else advised, there are other GYN things to check out also, like fibroids. Many, but not all, women with PCOS are hypo; many, but not all, will have heavy frequent periods. However, some women are hyper and/or have fewer, lighter periods - something to bear in mind if your dr. rules it out because of the Graves. Take care, 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 April 18, 2002 Report Share Posted April 18, 2002 Believe it or not, there are endos who will still promote RAI when a TED is clearly manifest! PCOS is an endocrine problem that affects the ovaries - it stands for polycystic ovarian syndrome. As someone else advised, there are other GYN things to check out also, like fibroids. Many, but not all, women with PCOS are hypo; many, but not all, will have heavy frequent periods. However, some women are hyper and/or have fewer, lighter periods - something to bear in mind if your dr. rules it out because of the Graves. Take care, 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 April 18, 2002 Report Share Posted April 18, 2002 I've never heard of anyone being on 75 mg. Tap. 40 is the highest I've seen, and then only for a few weeks in the beginning of treatment. Terry > > Reply-To: graves_support > Date: Thu, 18 Apr 2002 09:56:56 -0700 > To: <graves_support > > Subject: Re: New member post > > Fay, > > confirmed her pills are the standard 50mg. PTU. > Which makes her dose 750mg. > > Back a few weeks ago I had this discussion with my endo, and he said that > 5mg. of Tap equals 50 mg. of PTU. > > So wouldn't that make it the same as 75mg. of Tap ? > That's pretty high, and one would assume a dose reduction would happen > pretty soon ? > > , > I certainly hope your doctor is not going by TSH alone. > Even if they do test your other numbers, it is still possible that some > doctors base the dose on TSH, and ignore the other numbers. This is wrong > when we are on ATDs. > > Please do get copies of your labs. So you can be positive what is going on. > > -Pam- > > > > > ------------------------------------- > 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 18, 2002 Report Share Posted April 18, 2002 I've never heard of anyone being on 75 mg. Tap. 40 is the highest I've seen, and then only for a few weeks in the beginning of treatment. Terry > > Reply-To: graves_support > Date: Thu, 18 Apr 2002 09:56:56 -0700 > To: <graves_support > > Subject: Re: New member post > > Fay, > > confirmed her pills are the standard 50mg. PTU. > Which makes her dose 750mg. > > Back a few weeks ago I had this discussion with my endo, and he said that > 5mg. of Tap equals 50 mg. of PTU. > > So wouldn't that make it the same as 75mg. of Tap ? > That's pretty high, and one would assume a dose reduction would happen > pretty soon ? > > , > I certainly hope your doctor is not going by TSH alone. > Even if they do test your other numbers, it is still possible that some > doctors base the dose on TSH, and ignore the other numbers. This is wrong > when we are on ATDs. > > Please do get copies of your labs. So you can be positive what is going on. > > -Pam- > > > > > ------------------------------------- > 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...
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