Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Elaine, I am 4 years post RAI with not great medical follow up for those 4 years...but part of that was *MY* responsibility. I was too busy taking care of everyone else instead of taking care of myself...so I fired 2 endos, let my primary, who admittedly knows little about GD though he is the one to diagnose me, take care of me. Long story short, he did blood work once a year...so I was hypo for at least the last year (he also only does a TSH) got my synthroid increased from the .075 I had been taking since going hypo after RAI to .o88. Now almost 3 mos. of this new dose am going hyper again... I had forgotten what hyper was like and I sure don't like it, it has scared me with all the heart palpatations, muscle weakness...and I am having chronic headaches with it. But would I rather be hypo...hmmm I would rather not be doing this at all <smile> I honestly can't tell you which I would rather be because neither is fun...just frustrating. If I had known/learned 4 years ago what I have in the last 4 months I would definately made a lot of very different decisions...like trying the ATD's for awhile...I was told by first endo that wasn't an option, only option was surgery/RAI...I chose the RAI because I was afraid of them slipping with that knife and never being able to talk again...Oh Lordy...the thought of that <gasp>...I also will NEVER take any drs. word on anything again...not without first educating myself. Sometimes I feel sorry for the drs. because they became a dr to help and take care of people and it has to be frustrating when they can't accomplish that job...and when they don't know or can't find the answers for whatever it is a patient is going through that is not going along with *how it should be*. I think that most of the drs. from the old school really hate when they are questioned or challenged from patients who are educating themselves on their diseases...hopefully there will be a new breed of dr. coming up that will encourage us to do so, encourage us to ask questions, encourage us to explore other avenues. For now though it appears that number is small and widespread. I know I would like to see it in my lifetime...hmmmm maybe my grandson will be a dr. one day. He is 4 now I have lots of time to work with him on how it could be improved Take Care, Jody ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 I think the more you stay hyper the worse it gets. I don't know if it's a question of choice....is it? Anyone know? I couldn't have gone on the way I was...it was only getting worse. I know some people stay un-diagnosed for a long time. We think my grandmother had Graves (had *all* the symptoms, but was a Christian Scientist and wouldn't go to doctor), and then she died of breast cancer. I'd rather let the ATD's do their work. I feel ok. No change in sleep patterns, now the hyper's going. (Yet, of course...things change so suddenly with this disease...) Must my 2 cents, though. Kari ATD'S Has anyone here made a personal decision that they would rather remain hyper and more alert than hypo and less alert? I fear becoming mentally and physically sluggish and that thought certainly is among my many considerations in refusing RAI. My two sisters (both hypo) admit that they have very little energy. I am a widow and live alone. It would be a disaster if I didn't function properly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Elaine: In the course of adjusting my meds, I believe I have experienced episodes of hypo symptoms (extreme chill, can't get out of bed, depression). One of the worst weeks of my earlier Grave's days was when I couldn't get out of bed, couldn't get the simplest things done, and felt a complete loss of confidence that I could continue to have a successful life. If these are the types of things that hypo patients go through, I would much prefer dealing with hyper issues. Perhaps because I've been " hyper " all my life and know it better. At 02:22 PM 04/07/2000 -0400, you wrote: >Has anyone here made a personal decision that they would rather remain hyper >and more alert than hypo and less alert? I fear becoming mentally and >physically sluggish and that thought certainly is among my many >considerations in refusing RAI. My two sisters (both hypo) admit that they >have very little energy. I am a widow and live alone. It would be a >disaster if I didn't function properly. > >Is information available on the often related depression and diminishment of >stamina that occurs after RAI? > >Elaine > > > >------------------------------------------------------------------------ >LOW RATE, NO WAIT! >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! >http://click./1/2122/3/_/585824/_/955131649/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 I am on PTU and it has worked both previously when I went into remission (1991), and during this bout when I have decreased in dosage (since late 98). One sister is a nurse, she tells me they are caring for a woman in her 80's who has been on PTU for years. The woman is alert (and as physically well as most 80 year olds). I certainly am prepared to stay on PTU forever if that is what it takes. Naturally, I sincerely hope for another remission. Since during this bout I have had associated TED (which, anyone's guess, may relate to the original rather than current bout), the suggestion by doctors that I undergo RAI almost borders on malpractice as far as I am concerned. Elaine ATD'S > > > Has anyone here made a personal decision that they would rather remain hyper > and more alert than hypo and less alert? I fear becoming mentally and > physically sluggish and that thought certainly is among my many > considerations in refusing RAI. My two sisters (both hypo) admit that they > have very little energy. I am a widow and live alone. It would be a > disaster if I didn't function properly. > > ------------------------------------------------------------------------ > 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! > http://click./1/936/3/_/585824/_/955132015/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 >I certainly am prepared to stay on PTU forever if that is what it takes. Me too. I just wish they'd put a coating on it. That aftertaste! Bleah. ~kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Isn't it awful! My main concern is that it NOT stick on my tongue and that it go down IMMEDIATELY <laughter>. Elaine RE: ATD'S > >I certainly am prepared to stay on PTU forever if that is what it takes. > > Me too. I just wish they'd put a coating on it. That aftertaste! > Bleah. > > ~kari > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Kari, They need to put a coating on both Tapazole and PTU. I gag everytime I have to take my PTU. I have to take 5 - 50 mg pills every 4 hours. Yuk! e RE: ATD'S > >I certainly am prepared to stay on PTU forever if that is what it takes. > > Me too. I just wish they'd put a coating on it. That aftertaste! > Bleah. > > ~kari > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/975/3/_/585824/_/955132982/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 I only have to take one a day...and I'm complaining... You poor thing!!! Kari Re: ATD'S Kari, They need to put a coating on both Tapazole and PTU. I gag everytime I have to take my PTU. I have to take 5 - 50 mg pills every 4 hours. Yuk! e RE: ATD'S > >I certainly am prepared to stay on PTU forever if that is what it takes. > > Me too. I just wish they'd put a coating on it. That aftertaste! > Bleah. > > ~kari > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/975/3/_/585824/_/955132982/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > ------------------------------------------------------------------------ Get a NextCard Visa, in 30 seconds! 1. Fill in the brief application 2. Receive approval decision within 30 seconds 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR Apply NOW! http://click./1/2646/3/_/585824/_/955134469/ ------------------------------------------------------------------------ ------------------------------------- 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. ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 e - are you saying that you take 250 mg every 4 hours? How many total a day? Yikes! My largest dosage ever was 450mg in a day (3 pills every 8 hours). I really think you need a second opinion. At 02:03 PM 04/07/2000 -0500, you wrote: >Kari, > >They need to put a coating on both Tapazole and PTU. I gag everytime I have >to take my PTU. I have to take 5 - 50 mg pills every 4 hours. > >Yuk! > >e > RE: ATD'S > > >> >I certainly am prepared to stay on PTU forever if that is what it takes. >> >> Me too. I just wish they'd put a coating on it. That aftertaste! >> Bleah. >> >> ~kari >> >> ------------------------------------------------------------------------ >> Get a NextCard Visa, in 30 seconds! >> 1. Fill in the brief application >> 2. Receive approval decision within 30 seconds >> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >> Apply NOW! >> http://click./1/975/3/_/585824/_/955132982/ >> ------------------------------------------------------------------------ >> >> ------------------------------------- >> 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. >> ---------------------------------------- >> >> >> > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >http://click./1/2646/3/_/585824/_/955134469/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Ok, how about the panic when you put the pill in your mouth too soon and there is no water in sight . . . this morning, I ended up pouring water from the kettle straight into my mouth! At 02:48 PM 04/07/2000 -0400, you wrote: >Isn't it awful! My main concern is that it NOT stick on my tongue and that >it go down IMMEDIATELY <laughter>. > >Elaine > > > RE: ATD'S > > >> >I certainly am prepared to stay on PTU forever if that is what it takes. >> >> Me too. I just wish they'd put a coating on it. That aftertaste! >> Bleah. >> >> ~kari >> > > > > >------------------------------------------------------------------------ >LOW RATE, NO WAIT! >Get a NextCard Visa, in 30 seconds! Get rates >as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. >Learn more at: >http://click./1/937/3/_/585824/_/955133213/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 , Yes, I take 250 mg every 4 hours. I am supposed to take 2 doses at night but sometimes I don't, (even though I am always awake!) I also take beta blockers and steriods 4 times a day. I asked the pharmacist about a dosage that high and he said that it would be OK, but I would have to be monitored constantly, which I am . I am up at the endo once or twice a week. Those pills taste horrible, can't stand them. It is really getting hard to stay on top of all of these pills that I have to take. e ---- Original Message ----- To: <graves_supportegroups> Sent: Friday, April 07, 2000 4:15 PM Subject: Re: ATD'S > e - are you saying that you take 250 mg every 4 hours? How many > total a day? Yikes! My largest dosage ever was 450mg in a day (3 pills > every 8 hours). > > I really think you need a second opinion. > > At 02:03 PM 04/07/2000 -0500, you wrote: > >Kari, > > > >They need to put a coating on both Tapazole and PTU. I gag everytime I have > >to take my PTU. I have to take 5 - 50 mg pills every 4 hours. > > > >Yuk! > > > >e > > RE: ATD'S > > > > > >> >I certainly am prepared to stay on PTU forever if that is what it takes. > >> > >> Me too. I just wish they'd put a coating on it. That aftertaste! > >> Bleah. > >> > >> ~kari > >> > >> ------------------------------------------------------------------------ > >> Get a NextCard Visa, in 30 seconds! > >> 1. Fill in the brief application > >> 2. Receive approval decision within 30 seconds > >> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >> Apply NOW! > >> http://click./1/975/3/_/585824/_/955132982/ > >> ------------------------------------------------------------------------ > >> > >> ------------------------------------- > >> 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. > >> ---------------------------------------- > >> > >> > >> > > > > > >------------------------------------------------------------------------ > >Get a NextCard Visa, in 30 seconds! > >1. Fill in the brief application > >2. Receive approval decision within 30 seconds > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >Apply NOW! > >http://click./1/2646/3/_/585824/_/955134469/ > >------------------------------------------------------------------------ > > > >------------------------------------- > >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. > >---------------------------------------- > > > > > > > > Shen > Holy Macro! > > > ------------------------------------------------------------------------ > DON'T HATE 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! > http://click./1/2120/3/_/585824/_/955142165/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Hi Elaine- In all honesty, I'd rather be hyper. I couldn't be as hyper as I was right before diagnosis (HR 150 before getting out of bed in a.m.-over 200 if I'd even just walk + severe exophthalmus). But I've been all degrees of hypo and found them all much more unpleasant than hyper except when I was at my sickest. Everyone liked being around me better too (except at the worst) so it's not just my perception of how I've been. Take care, ETM wrote: > Has anyone here made a personal decision that they would rather remain hyper > and more alert than hypo and less alert? I fear becoming mentally and > physically sluggish and that thought certainly is among my many > considerations in refusing RAI. My two sisters (both hypo) admit that they > have very little energy. I am a widow and live alone. It would be a > disaster if I didn't function properly. > > Is information available on the often related depression and diminishment of > stamina that occurs after RAI? > > Elaine > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > 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! > http://click./1/2122/3/_/585824/_/955131649/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 > , > > Yes, I take 250 mg every 4 hours. I am supposed to take 2 doses at night > but sometimes I don't, (even though I am always awake!) I also take beta > blockers and steriods 4 times a day. That is a lot of pills. I only take 150mg 3x a day and I still miss at least one dose a couple times a week. > I asked the pharmacist about a dosage that high and he said that it would be > OK, but I would have to be monitored constantly, which I am . I am up at > the endo once or twice a week. This is good. > Those pills taste horrible, can't stand them. It is really getting hard to > stay on top of all of these pills that I have to take. Do you use a pill minder? I find that I have to use one, as does hubby wiht his meds. This first time thru with Graves' I was taking my doses 4 times a day and not remembering 1/2 of them. I also had to use an alarm to remember my afternoon dose. As for the taste, yup know that one well. A new trick I have found. Peppermint Altoids. Pop my pills, then 1-2 altoids. Bite down on one and man that peppermint goes to work. Not entirely perfect (there still is a metallic after taste) but it is better than nothing. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 I am very worried myself about her doctor. He seems to be winging it. I have never heard of such doses (I believe she said the pharmacist even questioned it). I think something is wrong here. I would be more comfortable to hear that a second opinion had been obtained. Elaine Re: ATD'S > e - are you saying that you take 250 mg every 4 hours? How many > total a day? Yikes! My largest dosage ever was 450mg in a day (3 pills > every 8 hours). > > I really think you need a second opinion. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Where can we read up on this treatment? At 09:32 PM 04/07/2000 -0600, you wrote: >The very high doses could indicatet he doctor is going to be using the >block treatment. >That is high doses until she is euthyroid and then the dose is cut and >T3 is introduced. This is a new avenue of treatment that is being used >in Europe. > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >http://click./1/2646/3/_/585824/_/955157240/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 The very high doses could indicatet he doctor is going to be using the block treatment. That is high doses until she is euthyroid and then the dose is cut and T3 is introduced. This is a new avenue of treatment that is being used in Europe. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 > >Reply-To: graves_supportegroups >To: graves_supportegroups >Subject: Re: ATD'S >Date: Fri, 07 Apr 2000 21:32:51 -0600 > >The very high doses could indicatet he doctor is going to be using the >block treatment. >That is high doses until she is euthyroid and then the dose is cut and >T3 is introduced. This is a new avenue of treatment that is being used >in Europe. > Hi and all, Ther high dose e is having is not strange. She has been speaking abt. her symptoms, and some of her lab. readings. In may LAY opinion she is right now *peak hyper. In these *hyper-peaks PTU is the drug of choice just because its capacity to inhibit thyroid peroxidase, i.e. the peripheral conversion of T4 to T3. And doses use to be high, 600 mg PTU or 60 mg methimazole to start with, and then 300 mg PTU or 30mg every 6 hours,respectively. So if her doctor prescribed 250 mg x 6/day makes 1500mg/day. It's OK having in mind how she is right now. And it is not that bad to spare the dose every 4 hours, rather than every six. -again, I'm not a doctor! just my two cents. Please join Atomic Women's mailing-list and club: http://www.onelist.com/subscribe/atomicwomen http://clubs.yahoo.com/clubs/atomicwomen Visit Atomic Women's sites: http://members.tripod.com/~LittleRed_2/ or http://www.geocities.com/ibayoa ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 > >Reply-To: graves_supportegroups >To: graves_supportegroups >Subject: Re: ATD'S >Date: Fri, 07 Apr 2000 18:44:05 -0700 > >Where can we read up on this treatment? > >At 09:32 PM 04/07/2000 -0600, you wrote: > >The very high doses could indicatet he doctor is going to be using the > >block treatment. > >That is high doses until she is euthyroid and then the dose is cut and > >T3 is introduced. This is a new avenue of treatment that is being used > >in Europe. > > > > Hi , We don't call it here 'block and replace'. It's simply one of the different protocols used with pills. Briefly: it consists of **combining ATD's (carbimazole in Europe, methimazone in USA) at a high dose (30 to 45 mg/daily) IN CONJUNCTION WITH thyroxine. I mean, ATD's are used alone at the beginning, and once euthyroidism has been reached, i.e. 6 weeks later aproximately, then thyroxine is ADDED to the ATD's The thyroxine will be adjusted to maintain normal thyroid test results. You need to be retested every two months. This avoids wild fluctuations, and therefore less emotional and physical suffering. In addition higher remission rate is reported. . Please join Atomic Women's mailing-list and club: http://www.onelist.com/subscribe/atomicwomen http://clubs.yahoo.com/clubs/atomicwomen Visit Atomic Women's sites: http://members.tripod.com/~LittleRed_2/ or http://www.geocities.com/ibayoa ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Hi this is from . she sent it to me a while ago when I was so fed up I was considering surgery. I had 1/2 my thyroid removed 20 years ago. But guess what the damn thing grew back. As I said, minimum duration here, in Europe, for anti-thyroid drugs treatment is one year in some cases but the most normal this minimum goes from 18 months to 2 years. ***The classic patterns followed by endocrinologists here are three: A) High doses of anti-thyroid drugs, to start with, till a clinical control of hyperthyroidism is reached (aprox. 2-6 weeks). Then, a maintenance dose is prescribed for 12-18 months, after which, it is stopped. Higher attack doses than in pattern A). On the sixth week T4 (thyroxine) is added, to avoid going hypothyroid. Duration of treatment with anti-thyroid drugs plus thyroxine 12 to 18 months. [some posters at the SG-BBT have reported to be under BRT (block and replacement therapy) which seems to me to be similar to this protocol. Some other people there (RAI advocates) usually discount this therapy, stating that " it's only six years since japanese etc etc " . And " not in Europe etc etc " . well,... they lack information!. I've successfully been on this therapy on 1981/82, 18 years ago, and I am not Japanese!. I've remained cured for 14/15 years and the reocurrence I had after all these years has been my fault. I know it, and know why. This is, in my opinion, the best **allopathic treatment. But, let me also point out that... the best results I ever had, came from adding **alternative approaches.] C) Some authors doubt of the anti-thyroid drugs having immuno-depressor effects or being able to modify the course of the disease. They rather think they inhibit the synthesis of thyroid hormones permitting, this way, to keep hyperthyroidism under control until a spontaneous cure is achieved. Attack doses given are like in pattern A) and then dose is slowly decreased, but keeping always euthyroid state. Treatment is followed until remission is achieved. If a recurrence might take place, treatment should be renewed. Long-term results are good, and a definitive cure is reached in 60-70% of the cases, as different authors reported. The remaining 30-40% have a recurrence some months after the treatment has been interrupted, specially if this has been short-time or irregularly followed by the patient. *It is accepted here that the longer the treatment is, the highest remission rate is obtained. However many patients go into cure after a short cycle of treatment. Yamamoto et al. in 1983 reported 95% remission rate. He prescribed his patients this treatment to be followed for *four years. [ " Outcome of patients with Graves' disease after long-term medical treatment guided by triiodothyronine (T3) suppresion test " . Clinical Endocrinology 1983; 19; 467-476 (I have asked Elaine to help me to find this paper, which I couldn't get so far. Hopefully, soon we will have it in full). There are two reasons to justify the use of long-term high doses of anti-thyroid drugs. 1) Their immuno-depressor effect on thyroid originated limphocytes, producers of thyroid stimulating antibodies. 2) Their abbility to modify the course of Graves' disease, according to what many data suggest. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 > The very high doses could indicatet he doctor is going to be using the > block treatment. > That is high doses until she is euthyroid and then the dose is cut and > T3 is introduced. This is a new avenue of treatment that is being used > in Europe. Please explain more about the Block Treatment that is used in Europe, and where to get more information on it? Also, I was just diagnosed on 3/31/2000, and started taking PTU on 4/4/2000. I'm on 200mg daily, and take 100mg every 12 hours. My heart rate has not gone down yet? How long does it take to kick IN?? My heart rate is in the mid to high 90's, and if I get active, it will go up to 115, 120 for a maybe 5-10 seconds and then down quickly to the 90's. ( I seem to think that my heart rate is some what higher since I've been on the PTU????) Is that possible, and what is going on? Also, how long does it take for the PTU to KICK IN? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 > Hi this is from . she sent it to me a while ago when I was so fed > up I was considering surgery. I had 1/2 my thyroid removed 20 years ago. > But guess what > the damn thing grew back. > > > As I said, minimum duration here, in Europe, for anti-thyroid drugs > treatment is one year in some cases but the most normal this minimum > goes > from 18 months to 2 years. > > ***The classic patterns followed by endocrinologists here are three: > > A) High doses of anti-thyroid drugs, to start with, till a clinical > control > of hyperthyroidism is reached (aprox. 2-6 weeks). Then, a maintenance > dose > is prescribed for 12-18 months, after which, it is stopped. > > Higher attack doses than in pattern A). On the sixth week T4 > (thyroxine) > is added, to avoid going hypothyroid. > Duration of treatment with anti-thyroid drugs plus thyroxine 12 to 18 > months. > > [some posters at the SG-BBT have reported to be under BRT (block and > replacement therapy) which seems to me to be similar to this protocol. > Some > other people there (RAI advocates) usually discount this therapy, > stating > that " it's only six years since japanese etc etc " . And " not in Europe > etc > etc " . well,... they lack information!. > > I've successfully been on this therapy on 1981/82, 18 years ago, and I > am > not Japanese!. I've remained cured for 14/15 years and the reocurrence I > had > after all these years has been my fault. I know it, and know why. > > This is, in my opinion, the best **allopathic treatment. > But, let me also point out that... the best results I ever had, came > from > adding **alternative approaches.] > > C) Some authors doubt of the anti-thyroid drugs having immuno- depressor > effects or being able to modify the course of the disease. They rather > think > they inhibit the synthesis of thyroid hormones permitting, this way, to > keep > hyperthyroidism under control until a spontaneous cure is achieved. > Attack > doses given are like in pattern A) and then dose is slowly decreased, > but > keeping always euthyroid state. Treatment is followed until remission is > achieved. If a recurrence might take place, treatment should be renewed. > > Long-term results are good, and a definitive cure is reached in 60- 70% > of > the cases, as different authors reported. The remaining 30-40% have a > recurrence some months after the treatment has been interrupted, > specially > if this has been short-time or irregularly followed by the patient. > > *It is accepted here that the longer the treatment is, the highest > remission > rate is obtained. > However many patients go into cure after a short cycle of treatment. > Yamamoto et al. in 1983 reported 95% remission rate. He prescribed his > patients this treatment to be followed for *four years. [ " Outcome of > patients with Graves' disease after long-term medical treatment guided > by > triiodothyronine (T3) suppresion test " . Clinical Endocrinology 1983; 19; > 467-476 (I have asked Elaine to help me to find this paper, which I > couldn't > get so far. Hopefully, soon we will have it in full). > > There are two reasons to justify the use of long-term high doses of > anti-thyroid drugs. > 1) Their immuno-depressor effect on thyroid originated limphocytes, > producers of thyroid stimulating antibodies. > 2) Their abbility to modify the course of Graves' disease, according to > what > many data suggest. Where can I get a copy of the Study you mentioned : Yamamoto et al. in 1983? Is there a document: Clinical Endocrinology 1983; 1 467-476, and where can i get a Copy.? Where can I go for more information on the Block and Replacement Therapy?? Is the BRT therapy the same as what reported by Yamamoto, or is this something different?? Thanks for the HELP> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2000 Report Share Posted April 8, 2000 On 08042000 Kmtressa@... writes: >Where can I get a copy of the Study you mentioned : Yamamoto et al. >in 1983? Is there a document: Clinical Endocrinology 1983; 1 467-476, >and where can i get a Copy.? Where can I go for more information on >the Block and Replacement Therapy?? Is the BRT therapy the same as >what reported by Yamamoto, or is this something different?? Thanks >for the HELP> > , Yamamoto's study has been published at the medical review " clinical Endocrinology " above quoted. I guess you can get a copy -or suggest your endo to get it- from any hospital of Faculty of Medicine library. I wanted to have a copy [in paper ... ], and was having some difficulty to get it. Elaine has been so kind (what an incredible human being this Elaine is!!!!) as to obtain it and send it to me by snail mail. I promised I would make a 'readable' excerpt and share it here, and I will do. I only need some more free time... But the main points of the protocol have been appointed yesterday, both in the posts kindly repasted and in a breef post from mine addressed to . Hope I can do that excerpt very soon. Take care. Please join Atomic Women's mailing-list and club: http://www.onelist.com/subscribe/atomicwomen http://clubs.yahoo.com/clubs/atomicwomen Visit Atomic Women's sites: http://members.tripod.com/~LittleRed_2/ or http://www.geocities.com/ibayoa ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Oh, I've even tried to fill my mouth with water *then* put the tablets in - anything to avoid that taste! I can't believe they are so revolting! Gea RE: ATD'S > > > > > >> >I certainly am prepared to stay on PTU forever if that is what it takes. > >> > >> Me too. I just wish they'd put a coating on it. That aftertaste! > >> Bleah. > >> > >> ~kari > >> > > > > > > > > > >------------------------------------------------------------------------ > >LOW RATE, NO WAIT! > >Get a NextCard Visa, in 30 seconds! Get rates > >as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > >Learn more at: > >http://click./1/937/3/_/585824/_/955133213/ > >------------------------------------------------------------------------ > > > >------------------------------------- > >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. > >---------------------------------------- > > > > > > > > Shen > Holy Macro! > > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/2646/3/_/585824/_/955142251/ > ------------------------------------------------------------------------ > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Thanks and for the material on Block and Replace. It took me a few days to have enough concentration to actually read the messages. , I have some questions about what you wrote, I hope you don't mind. When you say they start Block and Replace therapy when euthyroid state is reached in about 6 weeks from start of ATD's, does that include TSH coming back up to normal, or only the T3 and T4 levels being within normal range? The reason I ask is that I am on my 6th month of ATD's, and was euthyroid as far as T3 and T4 were concerned quite some time ago. TSH just came up to normal 2 months ago. Wondering if it is too late to think about the thyroxine therapy. Also, if long term ATD therapy has proven to cause more successful remissions, does that mean that even if I am in remission I should continue on the ATD's to improve my chances of a long term remission? Doesn't this push me into hypo for sure? Does adding Thyroxine to long term ATD's enhance the possibility of successful (longterm) remission? I am not feeling any hypo symptoms I can identify - have been attributing the anxiety and muscle weakness/pain to being slightly hyper. However, I know these symptoms are possible on both sides, so perhaps I am slightly hypo. I haven't gotten much done in 2 weeks, if that's any sign. I'm feeling very precarious because my numbers are good, but may be easily toppled over to hypo, which I fear, and I don't really know how to keep on top of it. I can't believe I do not have a doctor that I can talk this stuff over with. Still have not finished Dr. Arem's book but am going straight to the section regarding diagnosis and hormone levels tonight. Thanks again for all your help. >>At 09:32 PM 04/07/2000 -0600, you wrote: >> >The very high doses could indicatet he doctor is going to be using the >> >block treatment. >We don't call it here 'block and replace'. It's simply one of the different >protocols used with pills. > >Briefly: it consists of **combining ATD's (carbimazole in Europe, >methimazone in USA) at a high dose (30 to 45 mg/daily) IN CONJUNCTION WITH >thyroxine. >I mean, ATD's are used alone at the beginning, and once euthyroidism has >been reached, i.e. 6 weeks later aproximately, then thyroxine is ADDED to >the ATD's > >The thyroxine will be adjusted to maintain normal thyroid test results. You >need to be retested every two months. > >This avoids wild fluctuations, and therefore less emotional and physical >suffering. In addition higher remission rate is reported. > >. > > > >Please join Atomic Women's mailing-list and club: >http://www.onelist.com/subscribe/atomicwomen >http://clubs.yahoo.com/clubs/atomicwomen > >Visit Atomic Women's sites: >http://members.tripod.com/~LittleRed_2/ >or http://www.geocities.com/ibayoa > >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >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! >http://click./1/2121/3/_/585824/_/955166065/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Randi: here's one of 's posts via : >> >>At 09:32 PM 04/07/2000 -0600, you wrote: >> >The very high doses could indicatet he doctor is going to be using the >> >block treatment. >> >That is high doses until she is euthyroid and then the dose is cut and >> >T3 is introduced. This is a new avenue of treatment that is being used >> >in Europe. >> > >> > > > >Hi , > >We don't call it here 'block and replace'. It's simply one of the different >protocols used with pills. > >Briefly: it consists of **combining ATD's (carbimazole in Europe, >methimazone in USA) at a high dose (30 to 45 mg/daily) IN CONJUNCTION WITH >thyroxine. >I mean, ATD's are used alone at the beginning, and once euthyroidism has >been reached, i.e. 6 weeks later aproximately, then thyroxine is ADDED to >the ATD's > >The thyroxine will be adjusted to maintain normal thyroid test results. You >need to be retested every two months. > >This avoids wild fluctuations, and therefore less emotional and physical >suffering. In addition higher remission rate is reported. > >. > > > >Please join Atomic Women's mailing-list and club: >http://www.onelist.com/subscribe/atomicwomen >http://clubs.yahoo.com/clubs/atomicwomen > >Visit Atomic Women's sites: >http://members.tripod.com/~LittleRed_2/ >or http://www.geocities.com/ibayoa > >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >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! >http://click./1/2121/3/_/585824/_/955166065/ >------------------------------------------------------------------------ > >------------------------------------- >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. >---------------------------------------- > > Shen Holy Macro! Quote Link to comment Share on other sites More sharing options...
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