Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Hi Aysha: It is a slow process from the standpoint that the endo starts you on a very low dose of ptu or tapazole and slowly progresses until you reach a dose that shuts the thyroid down. The " shut down " dose then becomes your maintenance dose. Replacement can be either synthroid or armour. I started on synthroid, then switched to armour. This too is a slow process, increasing the supplemental thyroid until you reach mid-range. I was having my blood tested every 6 weeks throughout the process. The Japanese reportedly had a high success rate with their brt patients within 12 months. My endo had read about their study and that's why he had a target period of 12 months for his 10 patients. May I ask, are you interested in brt for yourself, and if so, why? Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 I was under the impression that BRT is a slow process and you should be on Synthroid for 5 years minimum. Thanks for the info though. Aysha arlanth-@... wrote: original article:hyperthyroidism/?start=45 65 > Hi: I was on block and replace from Sept. 1994 to Sept. 1998. My endo put > 10 of his patients on brt, including me, and it didn't work for any of us. > The other 9 had rai after one year on brt. In Sept. 1998, I started taking > just enough PTU to control my thyroid. This was my decision, not my endo. > He wanted me to have rai. I do have regular blood tests about every 4-6 mos. > so I can adjust the PTU accordingly. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Thank you for your response Joyce, I am just looking for alternatives to RAI and surgery for my Graves - I also have TED - it varies from day to day regarding how obvious it is. I have Graves for 4-5 years now and it is NOT going into remission and would like to try alternative medicine. Aysha -- On Wed, 15 Mar 2000 23:00:54 ARLANTHA wrote: >Hi Aysha: It is a slow process from the standpoint that the endo starts you >on a very low dose of ptu or tapazole and slowly progresses until you reach a >dose that shuts the thyroid down. The " shut down " dose then becomes your >maintenance dose. Replacement can be either synthroid or armour. I started >on synthroid, then switched to armour. This too is a slow process, >increasing the supplemental thyroid until you reach mid-range. I was having >my blood tested every 6 weeks throughout the process. > >The Japanese reportedly had a high success rate with their brt patients >within 12 months. My endo had read about their study and that's why he had a >target period of 12 months for his 10 patients. > >May I ask, are you interested in brt for yourself, and if so, why? Joyce > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/937/5/_/6563/_/953179305/ > >-- Create a poll/survey for your group! >-- vote?listname=hyperthyroidism & m=1 > > > -- Join the most exciting community of women on the web! iVillage.com's FREE membership gets you private email, your own home page, special discounts and sweepstakes, and dozens of problem-solving tools. http://www.ivillage.com/frame/join_email.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Hi Aysha: If I had known in 1994 what I know now, I doubt I would have tried brt. And for sure, I'm sorry I stayed on it for 4 years. As for the ted, I've experienced just about everything including protrusion and retracted lids. I was always looking for wrap around sunglasses to hide my eyes. For a period of time my left eye was protruding quite a bit more than my right which gave me an unusual appearance to say the least. My endo said my ted was " mild " but I was mortified because my eyes had always been one of me best features. At their worse, I think the protrusion in my eyes measured 19.5 and 18.5. I believe normal for me is about 17.5. But, even without protrusion, we can be miserable if our lids are retracted. That gives us a staring appearance, and makes it difficult to look someone in the eye while chatting. For the last 6 months, my eyes have had a normal appearance and they feel good. At my endo appt. on 3-2-00, my eyes measured 18 and 17.5. As I said previously, I believe taking just enough ptu to keep my thyroid levels at mid range have helped my eyes a lot. Are you taking ptu or tapazole now? How is ted affecting your eyes? This board has about 186 members; some of them are in remission and they certainly are supportive. has done much research on ted and you might find something in the archives to help you. Upon 's recommendation, I gave up coffee and chocolate, and I believe that has helped me quite a bit. Take real good care of yourself. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Joyce, I know how you feel regarding the TED. I have both retraction of the eyelids and the protrusion. Yesterday when they were measured they were both 18 but normally the right eye is worse. My eyes were one of my best features but not any more - I am so self consious of them. They are also extremly light sensitive. I am on Tapazole 25mg (after 5 years) - still no sign of remission. I could handle the Graves if I didn't have the TED as well - and worse again I've just been diagnosed with Diabetes (Type 1 - autoimmune). It's difficult to cope with all of these illnesses. I'm so happy for you that your eyes are doing better. Do you plan to stay on meds indefinately?? I am scared of the RAI and am changing endo's as I am not happy with the one I have. I will look into giving up coffee but I don't drink much of it (1/2 cup a day) and chocolate is out at the moment as I'm doing Low Carb (for my diabetes). I need to set a quitting date for smoking - I know that has to help. I've noticed that my eyes are better in the mornings - I don't know why that is. How is Ptu different from Tapazole?? Thanks for the information and God Bless, Aysha -- On Fri, 17 Mar 2000 02:02:33 ARLANTHA wrote: >Hi Aysha: If I had known in 1994 what I know now, I doubt I would have tried >brt. And for sure, I'm sorry I stayed on it for 4 years. As for the ted, >I've experienced just about everything including protrusion and retracted >lids. I was always looking for wrap around sunglasses to hide my eyes. For >a period of time my left eye was protruding quite a bit more than my right >which gave me an unusual appearance to say the least. My endo said my ted >was " mild " but I was mortified because my eyes had always been one of me best >features. At their worse, I think the protrusion in my eyes measured 19.5 >and 18.5. I believe normal for me is about 17.5. But, even without >protrusion, we can be miserable if our lids are retracted. That gives us a >staring appearance, and makes it difficult to look someone in the eye while >chatting. For the last 6 months, my eyes have had a normal appearance and >they feel good. At my endo appt. on 3-2-00, my eyes measured 18 and 17.5. >As I said previously, I believe taking just enough ptu to keep my thyroid >levels at mid range have helped my eyes a lot. Are you taking ptu or >tapazole now? How is ted affecting your eyes? > >This board has about 186 members; some of them are in remission and they >certainly are supportive. has done much research on ted and you might >find something in the archives to help you. Upon 's recommendation, I >gave up coffee and chocolate, and I believe that has helped me quite a bit. >Take real good care of yourself. Joyce > >------------------------------------------------------------------------ >MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2122/7/_/6563/_/953276576/ > >-- Easily schedule meetings and events using the group calendar! >-- cal?listname=hyperthyroidism & m=1 > > > -- Join the most exciting community of women on the web! iVillage.com's FREE membership gets you private email, your own home page, special discounts and sweepstakes, and dozens of problem-solving tools. http://www.ivillage.com/frame/join_email.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2000 Report Share Posted March 18, 2000 Aysha: It doesn't sound like you have much protrusion if both eyes measure 18; however " normal " depends on the person. Do you know what your eyes should measure to be normal? With lid retraction my eyes felt like they were protruding more than what they measured. I thought lids retracted only when thyroid levels were high, but I found out through personal experience that they will also retract when levels are too low. My endo acknowledged that this happens, and said no one knows why. When you have your blood tested, does your endo give you a copy of the results? If not, ask for a copy before you leave his office. In fact, you might want to obtain copies for the last couple of years, just for your own info. Does he check your T4? If so, is it at mid-range? How often do you have your blood checked? Is the 25 mg. of tapazole you're on now lower than when you started? I am also afraid of rai, and also I think it's stupid to kill the thyroid when it isn't the problem. I have been both hypo and hyper and I can tell you that I prefer hyper. For one thing, the supplemental thyroid never allowed me to feel as good as I do on my own thyroid produced hormones. Yes, I will stay on the ptu as long as necessary. With regards to smoking, my paperback copy of " Your thyroid, a Home Reference " by Drs. Wood, and Ridgway, on p. 8 says: " Recently smoking has also been linked to the development of hyperthyroidism, but again, the way in which the disease is triggered by tobacco is unknown " . The difference between tapazole and ptu? My knowledge is very limited; however I do know that tapazole is usually taken once a day whereas ptu is taken about every 8 hours. did some research on ted, and found that tapazole might be of more benefit to the eyes than ptu. I wish I had known that before I started the ptu; I'd be reluctant to change after this length of time. How long have your lids been retracted? If you know what your thyroid levels are, maybe we can figure out why they haven't returned to normal. Take really good care of yourself (and try to give up cigarettes). Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 Joyce, I haven't got my lab results but will ask for copies of them. I am changing endo's in 2 weeks and hopefully will be able to have a better relationship with this woman. Part of the problem is I didn't have health insurance for a long time and didn't really go to the endo as often as I should - then went overseas and am now back in the US. I am kinda starting over in terms of lab tests. I started on 30mg and was down to 10mg Tapazole but when I did my lab tests again the doc increased my dosage. I got TED shortly after being diagnosed with GD but it was very slight and only in my right eye - now it is both and worse still is the eyelid retraction - that is worse than the bugginess really. I wear glasses and have such a hard time as I think they draw attention to my eyes. I am getting my lab work done on Wed and will post the results in a couple of weeks - maybe someone can enlighten me. I am going to start with Copper supplements and am going to quit smoking as I know this will help some. I have read that your TED stabilizes after 2 years??? I've had it for a while and hate to think I will have to live like this forever. Thanks for your help and God bless. -- On Sat, 18 Mar 2000 01:31:32 ARLANTHA wrote: >Aysha: It doesn't sound like you have much protrusion if both eyes measure >18; however " normal " depends on the person. Do you know what your eyes >should measure to be normal? With lid retraction my eyes felt like they were >protruding more than what they measured. I thought lids retracted only when >thyroid levels were high, but I found out through personal experience that >they will also retract when levels are too low. My endo acknowledged that >this happens, and said no one knows why. When you have your blood tested, >does your endo give you a copy of the results? If not, ask for a copy before >you leave his office. In fact, you might want to obtain copies for the last >couple of years, just for your own info. Does he check your T4? If so, is >it at mid-range? How often do you have your blood checked? Is the 25 mg. of >tapazole you're on now lower than when you started? > >I am also afraid of rai, and also I think it's stupid to kill the thyroid >when it isn't the problem. I have been both hypo and hyper and I can tell >you that I prefer hyper. For one thing, the supplemental thyroid never >allowed me to feel as good as I do on my own thyroid produced hormones. Yes, >I will stay on the ptu as long as necessary. > >With regards to smoking, my paperback copy of " Your thyroid, a Home >Reference " by Drs. Wood, and Ridgway, on p. 8 says: " Recently smoking >has also been linked to the development of hyperthyroidism, but again, the >way in which the disease is triggered by tobacco is unknown " . > >The difference between tapazole and ptu? My knowledge is very limited; >however I do know that tapazole is usually taken once a day whereas ptu is >taken about every 8 hours. did some research on ted, and found that >tapazole might be of more benefit to the eyes than ptu. I wish I had known >that before I started the ptu; I'd be reluctant to change after this length >of time. > >How long have your lids been retracted? If you know what your thyroid >levels are, maybe we can figure out why they haven't returned to normal. >Take really good care of yourself (and try to give up cigarettes). Joyce > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/7/_/6563/_/953361113/ > >-- Talk to your group with your own voice! >-- VoiceChatPage?listName=hyperthyroidism & m=1 > > > -- Join the most exciting community of women on the web! iVillage.com's FREE membership gets you private email, your own home page, special discounts and sweepstakes, and dozens of problem-solving tools. http://www.ivillage.com/frame/join_email.html Quote Link to comment Share on other sites More sharing options...
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