Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi is, No, you are not alone! You have gotten some good advice from some very caring folks! I am kinda concerned about the side effects that you may sustain from being on Steroids right now....might be a double whammy for the emotions that you are already having. How long a course are you on? As someone who has been thru it, I can testify that RAI and TED (thyroid eye disease) are contraindicated. You can read my story at the link in my signature. Get yourself educated and post questions when you need to! You are on your way to recovery! God bless, Hashi's, Graves, TED worsened by RAI Sept. 2001 http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi is, No, you are not alone! You have gotten some good advice from some very caring folks! I am kinda concerned about the side effects that you may sustain from being on Steroids right now....might be a double whammy for the emotions that you are already having. How long a course are you on? As someone who has been thru it, I can testify that RAI and TED (thyroid eye disease) are contraindicated. You can read my story at the link in my signature. Get yourself educated and post questions when you need to! You are on your way to recovery! God bless, Hashi's, Graves, TED worsened by RAI Sept. 2001 http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi is, No, you are not alone! You have gotten some good advice from some very caring folks! I am kinda concerned about the side effects that you may sustain from being on Steroids right now....might be a double whammy for the emotions that you are already having. How long a course are you on? As someone who has been thru it, I can testify that RAI and TED (thyroid eye disease) are contraindicated. You can read my story at the link in my signature. Get yourself educated and post questions when you need to! You are on your way to recovery! God bless, Hashi's, Graves, TED worsened by RAI Sept. 2001 http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi is! So glad you found us here! This is the greatest group of " been there, done that " people I've " met " . Have you been started on medications yet? Sounds like you should be started on an anti-thyroid med and perhaps some beta-blockers. The test they want you to do is the radio-iodine uptake and scan. You'll ingest some radioactive iodine and the next day a machine will track how much your thyroid has taken up and if it's being concentrated in one spot or all over. I had it done myself in April 1997 and my scan showed all over thyroid hyperactivity. An antibody blood test can confirm Graves without this scan but most endos (endocrinologists) don't use the antibody testing. No, you are not crazy! But, it sounds liek you are pretty hyper right now and I will advise you that you avoid any long-term, long acting decisions on your health. The doctors are probably going to recommend teh RAI treatment or surgery. Right now push them to get you on meds to get you feeling better and thinking clearer first. Then, once you are more back to your old self you can think how you want to proceed long term. in MA, USA Diagnosed w/Graves, March 1997 So far refusing RAI Treatment and Surgery!!! Off Meds Since June 2000 Surpressed TSH and somehwat normal thyroid levels Waiting on labs taken 10/21/02. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi is! So glad you found us here! This is the greatest group of " been there, done that " people I've " met " . Have you been started on medications yet? Sounds like you should be started on an anti-thyroid med and perhaps some beta-blockers. The test they want you to do is the radio-iodine uptake and scan. You'll ingest some radioactive iodine and the next day a machine will track how much your thyroid has taken up and if it's being concentrated in one spot or all over. I had it done myself in April 1997 and my scan showed all over thyroid hyperactivity. An antibody blood test can confirm Graves without this scan but most endos (endocrinologists) don't use the antibody testing. No, you are not crazy! But, it sounds liek you are pretty hyper right now and I will advise you that you avoid any long-term, long acting decisions on your health. The doctors are probably going to recommend teh RAI treatment or surgery. Right now push them to get you on meds to get you feeling better and thinking clearer first. Then, once you are more back to your old self you can think how you want to proceed long term. in MA, USA Diagnosed w/Graves, March 1997 So far refusing RAI Treatment and Surgery!!! Off Meds Since June 2000 Surpressed TSH and somehwat normal thyroid levels Waiting on labs taken 10/21/02. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Hi again is, I am happy you are on meds!! It should make you feel betetr soon if you aren't already feeling a bit better. Graves Disease sounds so scary, doesn't it? But we go on and we all seem to survive somehow. Makes me feel betetr though that there are others out tehre who are like me. The old misery loves company thing. in MA, USA Diagnosed w/Graves, March 1997 So far refusing RAI Treatment and Surgery!!! Off Meds Since June 2000 Surpressed TSH and somehwat normal thyroid levels Waiting on labs taken 10/21/02. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Welcome is! Good for you that you were able to cut down on the smoking! That's a major step to good health no matter what direction your thyroid disease takes. It will be an added source of stress to you now. If you find yourself indulging in not terribly unhealthy comfort eating or sweets now don't be too hard on yourself. Fluctuating weight is a part of this that you may have to put up with till you're on a more even keel. I hope you won't consider me presumptuous if I offer a certain outline to you to help you organize yourself as you embark on treatment. Here are a number of important points: 1. Take a deep breath (slow down and relax) and research. I'm going to tell you something that may strike you as bizarre but true: Your dr. - the endocrinologist ( " endo, " the thyroid guy) may not offer you the best treatment or enough information. Please avail yourself of help from the group regarding any concerns you have now and will in the future. Don't swallow or drink ANYTHING else until you are sure you understand all the implications. 2. You may already have thyroid eye disease (TED). With all the other appointments you have to make, you need to find an ophthomologist experienced in TED to get some baseline measurements. There are many good reasons not to have RAI but especially if you are already showing signs of TED it is clearly contraindicated and NO RESPONSIBLE endo will recommend it at this point. Again, I am so excited for you that you were able to cut down on smoking. That will also help your eyes. 3. There are 3 major treatment options ahead of you: a. Antithyroid drugs (ATD's) b. Partial or total thyroidectomy c. Radioactive iodine (RAI) - ablation of the thyroid with RAI I'm going to go backwards here and start with " c " . On the homepage are two important things you should read (actually, many more!). One is the list of 20 reasons NOT to have RAI, with citations to impress medical professionals. Another is a contract Jody drew up to present an endo with before consenting to RAI. RAI is permanent and it is sad that many drs. rush a patients into it without giving them time to research their options. b. surgery - a major step and also permanent. Like RAI, the patient usually becomes hypothyroid but without the dangerous side effects. Used when a patient cannot tolerate ATD's or doesn't want to commit to the usual 2 years of the ATD regimen (because say, the patient is a woman and wants to have a baby sooner). c. Anti thyroid drugs. Most of us here would say this is your best bet and we have experience with them. 4. Important points about ATDs a. The two major ones: 1. Methimazole (commonly referred to by its brand name Tapazole or outside of the US carbimozole, a similar drug) 2. PTU (propylthyrauricel?) b. If you can't tolerate one you CAN try the other. c. You will need regular monitoring - regular bloodwork, specific tests. This is a lot to swallow so I'm going to stop now with just 3 more bits of info. #1 Are you on beta blockers now? If you're not going to start ATD's immediately you must get on one. #2 Get hold of these 2 books: Graves Disease, a Practical Guide by Elaine (who is a member of this list) and The Thyroid Solution by Dr. Ridha Arem. You can get a good deal on them though barnesandnoble. #3 You need baseline bloodword BEFORE starting ATDs. This has been discussed fairly recently. The bloodwork includes antibodies (I THINK: TSI, TPO, and TRab), TSH, FREE T3 and T4 (not TOTAL), white blood count, and liver enzymes. Take care, Fay ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Welcome is! Good for you that you were able to cut down on the smoking! That's a major step to good health no matter what direction your thyroid disease takes. It will be an added source of stress to you now. If you find yourself indulging in not terribly unhealthy comfort eating or sweets now don't be too hard on yourself. Fluctuating weight is a part of this that you may have to put up with till you're on a more even keel. I hope you won't consider me presumptuous if I offer a certain outline to you to help you organize yourself as you embark on treatment. Here are a number of important points: 1. Take a deep breath (slow down and relax) and research. I'm going to tell you something that may strike you as bizarre but true: Your dr. - the endocrinologist ( " endo, " the thyroid guy) may not offer you the best treatment or enough information. Please avail yourself of help from the group regarding any concerns you have now and will in the future. Don't swallow or drink ANYTHING else until you are sure you understand all the implications. 2. You may already have thyroid eye disease (TED). With all the other appointments you have to make, you need to find an ophthomologist experienced in TED to get some baseline measurements. There are many good reasons not to have RAI but especially if you are already showing signs of TED it is clearly contraindicated and NO RESPONSIBLE endo will recommend it at this point. Again, I am so excited for you that you were able to cut down on smoking. That will also help your eyes. 3. There are 3 major treatment options ahead of you: a. Antithyroid drugs (ATD's) b. Partial or total thyroidectomy c. Radioactive iodine (RAI) - ablation of the thyroid with RAI I'm going to go backwards here and start with " c " . On the homepage are two important things you should read (actually, many more!). One is the list of 20 reasons NOT to have RAI, with citations to impress medical professionals. Another is a contract Jody drew up to present an endo with before consenting to RAI. RAI is permanent and it is sad that many drs. rush a patients into it without giving them time to research their options. b. surgery - a major step and also permanent. Like RAI, the patient usually becomes hypothyroid but without the dangerous side effects. Used when a patient cannot tolerate ATD's or doesn't want to commit to the usual 2 years of the ATD regimen (because say, the patient is a woman and wants to have a baby sooner). c. Anti thyroid drugs. Most of us here would say this is your best bet and we have experience with them. 4. Important points about ATDs a. The two major ones: 1. Methimazole (commonly referred to by its brand name Tapazole or outside of the US carbimozole, a similar drug) 2. PTU (propylthyrauricel?) b. If you can't tolerate one you CAN try the other. c. You will need regular monitoring - regular bloodwork, specific tests. This is a lot to swallow so I'm going to stop now with just 3 more bits of info. #1 Are you on beta blockers now? If you're not going to start ATD's immediately you must get on one. #2 Get hold of these 2 books: Graves Disease, a Practical Guide by Elaine (who is a member of this list) and The Thyroid Solution by Dr. Ridha Arem. You can get a good deal on them though barnesandnoble. #3 You need baseline bloodword BEFORE starting ATDs. This has been discussed fairly recently. The bloodwork includes antibodies (I THINK: TSI, TPO, and TRab), TSH, FREE T3 and T4 (not TOTAL), white blood count, and liver enzymes. Take care, Fay ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 Jody, Thanks, I was rushing and though I plan of 'meeting' you is :-)...now I shall zip back up this LONG list of emails I have here and get right back to you. But I did grab my old bottle of PTU that Jody mentioned to you. The full name is Propylthiourac...in the last 4 years I still have to look at the bottle for that word. PTU is much easier. -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 is, I am sending you the " Letter to Spouses. " Since there is a copy right on it, and we do not own it, we can not post it here. It can help others to understand what we are going through. If anyone else wants a copy, please let me know. -Pam L -3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 is, I am sending you the " Letter to Spouses. " Since there is a copy right on it, and we do not own it, we can not post it here. It can help others to understand what we are going through. If anyone else wants a copy, please let me know. -Pam L -3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 is, I am sending you the " Letter to Spouses. " Since there is a copy right on it, and we do not own it, we can not post it here. It can help others to understand what we are going through. If anyone else wants a copy, please let me know. -Pam L -3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is and all, I can not sit here and be polite while I SMELL A RAT ! is...Do your doctors KNOW that you will not take the RAI ( radio active iodine ) ??? Everything they are doing to you is standard pretreatment for RAI. The dose of 1200 mg of PTU is very unusual, and the only reason I was on such a high dose is because I was in emergency in a very serious thyroid storm. If you were feeling good within 2 weeks, that tells me you were not as sick as I was. Thus the 1200mg may well be wrong for you. But it would work if they wanted to quickly get your levels down to prevent a storm when you swallowed the RAI. The scan they are having you take the radioactive pill for and come back to have it scanned later, is standard to be used to judge the dose of RAI needed to kill the thyroid. This is the only reason the scan is on any use. The prednisone dose you describe, is also standard pre treatment before RAI. And being told to not resume taking the PTU for 4 days after is not right IF they were planning on you staying on PTU for treatment. But it is standard IF they read the scan you take...rush you off down the hall that day or the next day..and have you take the RAI. They will tell you your levels are off the charts ( standard line we all hear ) and that if you don't take the RAI you will die ( another standard line we all hear). They will most likely have a bunch of other lies up their sleeves if you start to object to the RAI. The PTU killing your liver and white blood cells is another old favorite. I am sorry to frighten you, but you have to know what is going on NOW, before they get your mind all messed up again by taking you OFF the PTU. This will cause you to go hyper again, and trust me...they KNOW this. They also know it will make you crazy and more likely to do exactly what they tell you to do. Remember, there is BIG money in RAI. And it is the CHEAPEST way for the insurance company to treat you. This means for the doctors to get along with the insurance company, they LIE and try to trick you, when you are at your most vulnerable. I may sound like some kind of NUT..but we see this all the time. They lied to me too. But I fooled them...the pills DID work ! -Pam L- -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is and all, I can not sit here and be polite while I SMELL A RAT ! is...Do your doctors KNOW that you will not take the RAI ( radio active iodine ) ??? Everything they are doing to you is standard pretreatment for RAI. The dose of 1200 mg of PTU is very unusual, and the only reason I was on such a high dose is because I was in emergency in a very serious thyroid storm. If you were feeling good within 2 weeks, that tells me you were not as sick as I was. Thus the 1200mg may well be wrong for you. But it would work if they wanted to quickly get your levels down to prevent a storm when you swallowed the RAI. The scan they are having you take the radioactive pill for and come back to have it scanned later, is standard to be used to judge the dose of RAI needed to kill the thyroid. This is the only reason the scan is on any use. The prednisone dose you describe, is also standard pre treatment before RAI. And being told to not resume taking the PTU for 4 days after is not right IF they were planning on you staying on PTU for treatment. But it is standard IF they read the scan you take...rush you off down the hall that day or the next day..and have you take the RAI. They will tell you your levels are off the charts ( standard line we all hear ) and that if you don't take the RAI you will die ( another standard line we all hear). They will most likely have a bunch of other lies up their sleeves if you start to object to the RAI. The PTU killing your liver and white blood cells is another old favorite. I am sorry to frighten you, but you have to know what is going on NOW, before they get your mind all messed up again by taking you OFF the PTU. This will cause you to go hyper again, and trust me...they KNOW this. They also know it will make you crazy and more likely to do exactly what they tell you to do. Remember, there is BIG money in RAI. And it is the CHEAPEST way for the insurance company to treat you. This means for the doctors to get along with the insurance company, they LIE and try to trick you, when you are at your most vulnerable. I may sound like some kind of NUT..but we see this all the time. They lied to me too. But I fooled them...the pills DID work ! -Pam L- -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is and all, I can not sit here and be polite while I SMELL A RAT ! is...Do your doctors KNOW that you will not take the RAI ( radio active iodine ) ??? Everything they are doing to you is standard pretreatment for RAI. The dose of 1200 mg of PTU is very unusual, and the only reason I was on such a high dose is because I was in emergency in a very serious thyroid storm. If you were feeling good within 2 weeks, that tells me you were not as sick as I was. Thus the 1200mg may well be wrong for you. But it would work if they wanted to quickly get your levels down to prevent a storm when you swallowed the RAI. The scan they are having you take the radioactive pill for and come back to have it scanned later, is standard to be used to judge the dose of RAI needed to kill the thyroid. This is the only reason the scan is on any use. The prednisone dose you describe, is also standard pre treatment before RAI. And being told to not resume taking the PTU for 4 days after is not right IF they were planning on you staying on PTU for treatment. But it is standard IF they read the scan you take...rush you off down the hall that day or the next day..and have you take the RAI. They will tell you your levels are off the charts ( standard line we all hear ) and that if you don't take the RAI you will die ( another standard line we all hear). They will most likely have a bunch of other lies up their sleeves if you start to object to the RAI. The PTU killing your liver and white blood cells is another old favorite. I am sorry to frighten you, but you have to know what is going on NOW, before they get your mind all messed up again by taking you OFF the PTU. This will cause you to go hyper again, and trust me...they KNOW this. They also know it will make you crazy and more likely to do exactly what they tell you to do. Remember, there is BIG money in RAI. And it is the CHEAPEST way for the insurance company to treat you. This means for the doctors to get along with the insurance company, they LIE and try to trick you, when you are at your most vulnerable. I may sound like some kind of NUT..but we see this all the time. They lied to me too. But I fooled them...the pills DID work ! -Pam L- -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 For anyone that missed this.. is said: ***I picked up the steroids last night and started them this morning. I am only taking 10 mg 2 times a day for a week and then 10 mg once a day for a week and that is it. I am off of my PTU until I go on Monday to have the iodine tablet tests. Miss Endo told me to start the PTU again 4 days after the tests.*** RAI is the ONLY reason I have EVER heard of the steroids being used this way. THIS was the final CLUE as to exactly what is going on here. Same exact thing with the 4 days off PTU after the supposed scan only. RAI is the only reason they would have her not start back on the PTU as soon as the scan is done. I do read a lot about RAI and this is all STANDARD pre and post treatment. is...you do not have to do the scan if you don't want to. But you do need a new doctor and right NOW. You need to be on PTU and you need to have labs done, and the proper dose . It will most likely NOT be 1200mg. Take a day off of work, and find a doctor right now. Get paper copies of the labs you have had done so far and post them. Another day or two, and you are not going to be able to think straight. -Pam L- still fuming Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 For anyone that missed this.. is said: ***I picked up the steroids last night and started them this morning. I am only taking 10 mg 2 times a day for a week and then 10 mg once a day for a week and that is it. I am off of my PTU until I go on Monday to have the iodine tablet tests. Miss Endo told me to start the PTU again 4 days after the tests.*** RAI is the ONLY reason I have EVER heard of the steroids being used this way. THIS was the final CLUE as to exactly what is going on here. Same exact thing with the 4 days off PTU after the supposed scan only. RAI is the only reason they would have her not start back on the PTU as soon as the scan is done. I do read a lot about RAI and this is all STANDARD pre and post treatment. is...you do not have to do the scan if you don't want to. But you do need a new doctor and right NOW. You need to be on PTU and you need to have labs done, and the proper dose . It will most likely NOT be 1200mg. Take a day off of work, and find a doctor right now. Get paper copies of the labs you have had done so far and post them. Another day or two, and you are not going to be able to think straight. -Pam L- still fuming Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 For anyone that missed this.. is said: ***I picked up the steroids last night and started them this morning. I am only taking 10 mg 2 times a day for a week and then 10 mg once a day for a week and that is it. I am off of my PTU until I go on Monday to have the iodine tablet tests. Miss Endo told me to start the PTU again 4 days after the tests.*** RAI is the ONLY reason I have EVER heard of the steroids being used this way. THIS was the final CLUE as to exactly what is going on here. Same exact thing with the 4 days off PTU after the supposed scan only. RAI is the only reason they would have her not start back on the PTU as soon as the scan is done. I do read a lot about RAI and this is all STANDARD pre and post treatment. is...you do not have to do the scan if you don't want to. But you do need a new doctor and right NOW. You need to be on PTU and you need to have labs done, and the proper dose . It will most likely NOT be 1200mg. Take a day off of work, and find a doctor right now. Get paper copies of the labs you have had done so far and post them. Another day or two, and you are not going to be able to think straight. -Pam L- still fuming Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Jody, Thank you for jumping in right away. Poor is doesn't know any of us. She has no way of knowing which of us are newbies or oldies. We need to help her because they are defiantly planning on her mind going nuts again. Yes..is...You are NOT crazy. But the treatment they have you on affects your mind. And they know it. All of us Gravsiens know it, because we have been there. Jody...I have been reading her posts, and everyone's great input. Then as I was doing dishes...it suddenly came crystal clear what the hell is going on. ! I do some of my best thinking over the dish pan. :-) -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Jody, Thank you for jumping in right away. Poor is doesn't know any of us. She has no way of knowing which of us are newbies or oldies. We need to help her because they are defiantly planning on her mind going nuts again. Yes..is...You are NOT crazy. But the treatment they have you on affects your mind. And they know it. All of us Gravsiens know it, because we have been there. Jody...I have been reading her posts, and everyone's great input. Then as I was doing dishes...it suddenly came crystal clear what the hell is going on. ! I do some of my best thinking over the dish pan. :-) -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Jody, Thank you for jumping in right away. Poor is doesn't know any of us. She has no way of knowing which of us are newbies or oldies. We need to help her because they are defiantly planning on her mind going nuts again. Yes..is...You are NOT crazy. But the treatment they have you on affects your mind. And they know it. All of us Gravsiens know it, because we have been there. Jody...I have been reading her posts, and everyone's great input. Then as I was doing dishes...it suddenly came crystal clear what the hell is going on. ! I do some of my best thinking over the dish pan. :-) -Pam L- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is, This story changes nothing. PTU comes in 50mg pills. That is how we know how much you are taking. Please study the pill bottle. The information IS on there somewhere in tiny print. :-) The fact that you did as you were told and took the pills right away says good things about you and bad things about your doctor not making this clear. Any endo knows new hyper patients will be confused, and they KNOW to write things down for you. All they are doing is pre and post RAI procedures. This is a fact. TRUE steroid use for thyroid eye disease is at much higher doses and for at LEAST 8 months to one year at lower doses. It is NEVER at the dose or time you describe. You are either being manipulated or this endo has know idea in the world how to treat thyroid or thyroid eye disease. As long as you understand ahead of time, you can do well, and get on with healing. But not under this doctors care. At least not by everything I have read so far. -Pam L- 3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is, This story changes nothing. PTU comes in 50mg pills. That is how we know how much you are taking. Please study the pill bottle. The information IS on there somewhere in tiny print. :-) The fact that you did as you were told and took the pills right away says good things about you and bad things about your doctor not making this clear. Any endo knows new hyper patients will be confused, and they KNOW to write things down for you. All they are doing is pre and post RAI procedures. This is a fact. TRUE steroid use for thyroid eye disease is at much higher doses and for at LEAST 8 months to one year at lower doses. It is NEVER at the dose or time you describe. You are either being manipulated or this endo has know idea in the world how to treat thyroid or thyroid eye disease. As long as you understand ahead of time, you can do well, and get on with healing. But not under this doctors care. At least not by everything I have read so far. -Pam L- 3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is, This story changes nothing. PTU comes in 50mg pills. That is how we know how much you are taking. Please study the pill bottle. The information IS on there somewhere in tiny print. :-) The fact that you did as you were told and took the pills right away says good things about you and bad things about your doctor not making this clear. Any endo knows new hyper patients will be confused, and they KNOW to write things down for you. All they are doing is pre and post RAI procedures. This is a fact. TRUE steroid use for thyroid eye disease is at much higher doses and for at LEAST 8 months to one year at lower doses. It is NEVER at the dose or time you describe. You are either being manipulated or this endo has know idea in the world how to treat thyroid or thyroid eye disease. As long as you understand ahead of time, you can do well, and get on with healing. But not under this doctors care. At least not by everything I have read so far. -Pam L- 3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 is, It's OK to be frightened, but do not PANIC. We have all weekend to help you learn what you need to know by Monday. And we will. Here are a couple of my favorite articles that will be relevant right now for you. The first is about the scan. This is the subject we have been debating here, starting a few days before you joined us. So you can also go the home page at Yahoo , and find the older posts. But...here is a great site with ACCURATE information. http://www.suite101.com/article.cfm/graves_disease/84431 http://www.suite101.com/article.cfm/graves_disease/54427 http://www.suite101.com/article.cfm/graves_disease/75480 Here is a past post from Elaine concerning the RAI scan, and it not being a useful tool. Though some do go through with it because of social pressure. Elaine is the author of 'Graves' Disease a Practical Guide'. It is available at most libraries. Once you see it, you will probably end up purchasing as it becomes the best reference material available. BTW...the profits go to thyroid research. She is not doing this to get rich. Anyway...here is that old post from Elaine. *** The blood tests measure how the thyroid is functioning, whether it's hyper or hypo. Please read this article which notes that the uptake is neither necessary nor desirable. You could still have the test if you want to establish a good relationship with your doctor, but you'd have this available if you want to show him current thought on the subject. http://www.medscape.com/viewarticle/433855 You probably have to sign but members hip is free. The article is called Management of Thyrotoxicosis by ph N. Fisher, MD *** -Pam L - oh...please read my signature..if I had stopped PTU at one year I would still be sick. 3 1/2 yr.Graves and TED, PTU, Remission due to education, SLOW reduction of PTU, improved lifestyle, excellent nutrition,herbs, and looking at the BIG picture ! Pills alone only fix symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
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