Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Sandy, Your doc probably feels threatened--after all, you are a " success " story and didn't follow the usual protocol and have RAI like he no doubt pushed for in the first place. so you succeeded in spite of the endo and the usual treatment, as many of us do. A big blow to the endo-ego, eh? If by chance you come out of remission some day when your stress level increases (and it's not an unusual thing, at all to do that) you MIGHT just sue him for not treating your disease " properly " to start with (via RAI) or something...could that also be an issue? I don't completely understand endo-think, I have to admit! But as someone close to remission myself, I'm rooting for ya! Terry > > Reply-To: graves_support > Date: Mon, 28 Apr 2003 19:40:37 -0000 > To: graves_support > Subject: Good Grief! > > Well, I have some great news and some not so great. My endo has taken > me off of all PTU. I was going hypo. I went from 6 PTU and 2 Inderal > tablets in Oct. 2002 to none Friday. I had been taking one PTU a day > for the last 6 weeks or so. I amazed her by reducing my iodine > drastically to one piece of bread a day (all that is required) > staying off most food that says on label more than 150 mg. of salt > and eating veggies and fruit especially goitrens and avocados and > blueberries which I found out recently are great anti toxins. > After I proved to her the proof is in the pudding she tells me when I > leave that if I start having symptoms again like heart pounding(which > is how I found out I had Graves)that she will not use the PTU or any > medicine again. She will call for the RAI at that point. > Now please tell me, what the HEY is up with that. > What is wrong with these doctors in America. Can't they at least TRY > to research people like me that are successful with diet along with > medicine like in Japan and Europe before they yank out peoples > organs? I know it takes alot of patience and changing to a new way > of life and using a little self-control but it wasn't that hard. I > just looked at every label and didn't buy processed foods much > especially ones that said over 150 mg. of salt. Sometimes 200mg. > occasionally. I didn't eat salt water fish and none in the beginning > but now every once in awhile fresh. I didn't even do any kind of > health food things. Can't afford it. Just stayed off of eating salt > by the ton mostly. > Maybe I am the exception and I don't intend to be telling anyone > medical info but it wouldn't hurt to lay off the iodine and salt if > you have Graves to see if it helps. > This really makes me mad and sad at the same time. Sandy > > > > ------------------------------------- > 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 do 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 28, 2003 Report Share Posted April 28, 2003 Sandy, Your doc probably feels threatened--after all, you are a " success " story and didn't follow the usual protocol and have RAI like he no doubt pushed for in the first place. so you succeeded in spite of the endo and the usual treatment, as many of us do. A big blow to the endo-ego, eh? If by chance you come out of remission some day when your stress level increases (and it's not an unusual thing, at all to do that) you MIGHT just sue him for not treating your disease " properly " to start with (via RAI) or something...could that also be an issue? I don't completely understand endo-think, I have to admit! But as someone close to remission myself, I'm rooting for ya! Terry > > Reply-To: graves_support > Date: Mon, 28 Apr 2003 19:40:37 -0000 > To: graves_support > Subject: Good Grief! > > Well, I have some great news and some not so great. My endo has taken > me off of all PTU. I was going hypo. I went from 6 PTU and 2 Inderal > tablets in Oct. 2002 to none Friday. I had been taking one PTU a day > for the last 6 weeks or so. I amazed her by reducing my iodine > drastically to one piece of bread a day (all that is required) > staying off most food that says on label more than 150 mg. of salt > and eating veggies and fruit especially goitrens and avocados and > blueberries which I found out recently are great anti toxins. > After I proved to her the proof is in the pudding she tells me when I > leave that if I start having symptoms again like heart pounding(which > is how I found out I had Graves)that she will not use the PTU or any > medicine again. She will call for the RAI at that point. > Now please tell me, what the HEY is up with that. > What is wrong with these doctors in America. Can't they at least TRY > to research people like me that are successful with diet along with > medicine like in Japan and Europe before they yank out peoples > organs? I know it takes alot of patience and changing to a new way > of life and using a little self-control but it wasn't that hard. I > just looked at every label and didn't buy processed foods much > especially ones that said over 150 mg. of salt. Sometimes 200mg. > occasionally. I didn't eat salt water fish and none in the beginning > but now every once in awhile fresh. I didn't even do any kind of > health food things. Can't afford it. Just stayed off of eating salt > by the ton mostly. > Maybe I am the exception and I don't intend to be telling anyone > medical info but it wouldn't hurt to lay off the iodine and salt if > you have Graves to see if it helps. > This really makes me mad and sad at the same time. Sandy > > > > ------------------------------------- > 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 do 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 28, 2003 Report Share Posted April 28, 2003 BTW, I forgot to mention in the last post: Did your endo do a TSI and make SURE your antibodies were <2 before taking you off the drugs? You didn't share any test results--might he also be setting you up for failure by abruptly weaning you off? I don't know how much 'one pill' of PTU is, as I take Tap--but I know I'm taking 2 crumbs of my tap pills a day right now, down from 3 crumbs (half of a 5 mg. pill is 3 crumbs, so I'm taking less than 2 mg. a day at the time). I feel absolutely sure that if my body does well on this little measly bit of medicine, for a straight month, AND my TSI are down low, that I'll be in remission--but I would never, ever just stop taking the meds without this gradual weaning down. I want my FT4, FT3 both to be well within the normal range, too. Terry > > Reply-To: graves_support > Date: Mon, 28 Apr 2003 19:40:37 -0000 > To: graves_support > Subject: Good Grief! > > Well, I have some great news and some not so great. My endo has taken > me off of all PTU. I was going hypo. I went from 6 PTU and 2 Inderal > tablets in Oct. 2002 to none Friday. I had been taking one PTU a day > for the last 6 weeks or so. I amazed her by reducing my iodine > drastically to one piece of bread a day (all that is required) > staying off most food that says on label more than 150 mg. of salt > and eating veggies and fruit especially goitrens and avocados and > blueberries which I found out recently are great anti toxins. > After I proved to her the proof is in the pudding she tells me when I > leave that if I start having symptoms again like heart pounding(which > is how I found out I had Graves)that she will not use the PTU or any > medicine again. She will call for the RAI at that point. > Now please tell me, what the HEY is up with that. > What is wrong with these doctors in America. Can't they at least TRY > to research people like me that are successful with diet along with > medicine like in Japan and Europe before they yank out peoples > organs? I know it takes alot of patience and changing to a new way > of life and using a little self-control but it wasn't that hard. I > just looked at every label and didn't buy processed foods much > especially ones that said over 150 mg. of salt. Sometimes 200mg. > occasionally. I didn't eat salt water fish and none in the beginning > but now every once in awhile fresh. I didn't even do any kind of > health food things. Can't afford it. Just stayed off of eating salt > by the ton mostly. > Maybe I am the exception and I don't intend to be telling anyone > medical info but it wouldn't hurt to lay off the iodine and salt if > you have Graves to see if it helps. > This really makes me mad and sad at the same time. Sandy > > > > ------------------------------------- > 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 do 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 28, 2003 Report Share Posted April 28, 2003 BTW, I forgot to mention in the last post: Did your endo do a TSI and make SURE your antibodies were <2 before taking you off the drugs? You didn't share any test results--might he also be setting you up for failure by abruptly weaning you off? I don't know how much 'one pill' of PTU is, as I take Tap--but I know I'm taking 2 crumbs of my tap pills a day right now, down from 3 crumbs (half of a 5 mg. pill is 3 crumbs, so I'm taking less than 2 mg. a day at the time). I feel absolutely sure that if my body does well on this little measly bit of medicine, for a straight month, AND my TSI are down low, that I'll be in remission--but I would never, ever just stop taking the meds without this gradual weaning down. I want my FT4, FT3 both to be well within the normal range, too. Terry > > Reply-To: graves_support > Date: Mon, 28 Apr 2003 19:40:37 -0000 > To: graves_support > Subject: Good Grief! > > Well, I have some great news and some not so great. My endo has taken > me off of all PTU. I was going hypo. I went from 6 PTU and 2 Inderal > tablets in Oct. 2002 to none Friday. I had been taking one PTU a day > for the last 6 weeks or so. I amazed her by reducing my iodine > drastically to one piece of bread a day (all that is required) > staying off most food that says on label more than 150 mg. of salt > and eating veggies and fruit especially goitrens and avocados and > blueberries which I found out recently are great anti toxins. > After I proved to her the proof is in the pudding she tells me when I > leave that if I start having symptoms again like heart pounding(which > is how I found out I had Graves)that she will not use the PTU or any > medicine again. She will call for the RAI at that point. > Now please tell me, what the HEY is up with that. > What is wrong with these doctors in America. Can't they at least TRY > to research people like me that are successful with diet along with > medicine like in Japan and Europe before they yank out peoples > organs? I know it takes alot of patience and changing to a new way > of life and using a little self-control but it wasn't that hard. I > just looked at every label and didn't buy processed foods much > especially ones that said over 150 mg. of salt. Sometimes 200mg. > occasionally. I didn't eat salt water fish and none in the beginning > but now every once in awhile fresh. I didn't even do any kind of > health food things. Can't afford it. Just stayed off of eating salt > by the ton mostly. > Maybe I am the exception and I don't intend to be telling anyone > medical info but it wouldn't hurt to lay off the iodine and salt if > you have Graves to see if it helps. > This really makes me mad and sad at the same time. Sandy > > > > ------------------------------------- > 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 do 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 28, 2003 Report Share Posted April 28, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 Terry ding wrote: > > BTW, I forgot to mention in the last post: Did your endo do a TSI and make > SURE your antibodies were <2 before taking you off the drugs? You didn't > share any test results--might he also be setting you up for failure by > abruptly weaning you off? I don't know how much 'one pill' of PTU is Can't speak for Sandy, but here PTU is invariably 50mg pills so six a day is 300mg, or equivalent to 30mg of Tapazole a day, which would have been a typical starting dose. One a day PTU (if it isn't split) is a low dose (less than 5mg Tapazole a day equivalent, probably equivalent to about 5mg if split in two i.e. 25mg every 12 hours) due to the short biological half life of PTU. Anything below twice daily dosing (with PTU) just doesn't work at all for me. That said I agree on the TSI. If you respond well with ATD, and don't get remission first try, I don't see the reason to nuke/cut the thyroid. Doctors often give the drugs two or three tries in the UK, and they haven't historically used TSI testing to decide if/when to stop so could probably do better. Sandy, do you get any carbohydrate craving? If so what do you satisfy them with, as this is my downfall, I reach for the cereals and the milk, and pump up the gluten and Iodine, and I suspect cutting down on both would help. Simon, with dreadful (and I suspect unrelated to my thyroid for a change!) upset stomach. -----BEGIN PGP SIGNATURE----- Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+raUCGFXfHI9FVgYRAsh1AKCi4li/vbw3XjpX/pNZPbFs8UAEgQCfVvv6 RcpyCjBwjdik0mSu5WuldxM= =ajpH -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 -This endo was religious about having my complete bloodwork every 4- 6wks. I was taking 50 mg. a day for last 6 wks. Simon, the only thing I seem to crave is tea, hot tea. Plain old Lipton. They do say tea has antiotidants like the blueberries. Maybe this is what has helped me so much. I really think it was the food as much as the PTU that helped. My stress has been reduced greatly since I was diagnosed in Aug. 2002. they waited till Oct. to give me medicine. I started off the salt and iodine soon as I found out in August by reading these groups and searching the net and following my gut. Last year we had a death, house problems plus someone screwed with my credit and put someone elses bill on mine. Then I also started my antique store on the web. A bit of stress, you might say. I don't think the doctors helped with this one bit though. They added to it. I was glad to see 2002 go. Plus the world situation. Prayer helped too, I am sure. Sandy -- In graves_support , Simon Waters wrote: > -----BEGIN PGP SIGNED MESSAGE----- > Hash: SHA1 > > Terry ding wrote: > > > > BTW, I forgot to mention in the last post: Did your endo do a TSI and make > > SURE your antibodies were <2 before taking you off the drugs? You didn't > > share any test results--might he also be setting you up for failure by > > abruptly weaning you off? I don't know how much 'one pill' of PTU is > > Can't speak for Sandy, but here PTU is invariably 50mg pills so six a > day is 300mg, or equivalent to 30mg of Tapazole a day, which would have > been a typical starting dose. > > One a day PTU (if it isn't split) is a low dose (less than 5mg Tapazole > a day equivalent, probably equivalent to about 5mg if split in two i.e. > 25mg every 12 hours) due to the short biological half life of PTU. > Anything below twice daily dosing (with PTU) just doesn't work at all > for me. > > That said I agree on the TSI. If you respond well with ATD, and don't > get remission first try, I don't see the reason to nuke/cut the thyroid. > Doctors often give the drugs two or three tries in the UK, and they > haven't historically used TSI testing to decide if/when to stop so could > probably do better. > > Sandy, do you get any carbohydrate craving? If so what do you satisfy > them with, as this is my downfall, I reach for the cereals and the milk, > and pump up the gluten and Iodine, and I suspect cutting down on both > would help. > > Simon, with dreadful (and I suspect unrelated to my thyroid for a > change!) upset stomach. > -----BEGIN PGP SIGNATURE----- > Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org > > iD8DBQE+raUCGFXfHI9FVgYRAsh1AKCi4li/vbw3XjpX/pNZPbFs8UAEgQCfVvv6 > RcpyCjBwjdik0mSu5WuldxM= > =ajpH > -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 > After I proved to her the proof is in the pudding she tells me when > I > leave that if I start having symptoms again like heart > pounding(which > is how I found out I had Graves)that she will not use the PTU or any > > medicine again. She will call for the RAI at that point. Did you now or at any point have a TSI? I decided that if I were to relapse with my former doctors that I wouldn't countenance their mentioning RAI (not that I would consider doing it) until after a round of ATDs properly prescribed and monitored, since I didn't have that the first time under their care, so they couldn't use my relapsing as an argument. It's wonderful that your efforts met with success - we can all learn from them. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 > After I proved to her the proof is in the pudding she tells me when > I > leave that if I start having symptoms again like heart > pounding(which > is how I found out I had Graves)that she will not use the PTU or any > > medicine again. She will call for the RAI at that point. Did you now or at any point have a TSI? I decided that if I were to relapse with my former doctors that I wouldn't countenance their mentioning RAI (not that I would consider doing it) until after a round of ATDs properly prescribed and monitored, since I didn't have that the first time under their care, so they couldn't use my relapsing as an argument. It's wonderful that your efforts met with success - we can all learn from them. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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