Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Kristee, I read that article on the autotransplantation, and got very excited. My personal theory is that all three of the treatment methods we have available are at best makeshifts and will all be obsolete in the next decade or so. It won't help me, but I'll be glad to see it available for those who follow us! Whatever will they have to debate about? About Beta blockers: they don't block thyroid hormones. They block many of the effects of having too much hormone in the bloodstream. Thyroid suppressing drugs (TSD's,) such as PTU actually reduce the levels of T3 and T4. Beta blockers are often used as a temporary treatment, especially to protect the heart, while waiting for the hormone levels to fall. I wish you health! This is a good place to learn. -- in Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Kristee, I am pretty new to the group too, but I wanted to say welcome. This group has already helped me out so much in terms of information and support. You asked a lot of questions that I can't answer. I am having a relapse of Graves' right now so I am relearning things and learning them for the first time. You asked: > Question: How many take beta blockers and still have abnormal T3 and T4's? Do the beta blockers 'always' block the T3 and T4? When I was first diagnosed with Graves' three years ago I took beta blockers (propranolol) for the first couple of months I was on ATD's. My understanding is that beta blockers do not have an effect on T3 and T4 but are used to regulate heartbeat (from palpitations) until thyroid levels are back in the normal range. (Please correct me if I'm wrong about this). Good luck finding the information that you need. I also have great hope that the medical community will soon gain more understanding about the nature of autoimmunityy. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Kristee ! You made it over here. Welcome ! ( you know me :-) ) The beta blockers are used most often when we are first diagnosed, and need relief from symptoms, and to protect our hearts from further damage. Only anti thyroid drugs truly work on our thyoid hormones. BUT.. Beta blockers do SOME slowing down of T4 being converted into T3. I assume this is one way it helps slow down the heart ( guessing on that part ). They are not a treatment for the excess hormone we have when hyper. I am impressed, you have sucked up knowlege so much in only... what ? two weeks ? three ? Glad you finaly got Elaines book. Have you had a chance to read the stories about individuals, towards the back of the book ? -Pam- glad you followed the trail of bread crumbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi , Welcome. I missed your story, as this wonderful new computer failed me big time, and I have now had my first reformatting experience. <sigh> I see you were in remission and are having a relapse. Since I am only in my fourth month of remission, do you have any advise as to what I should NOT do. How did you treat your Graves' the first time, and now this time? Did you also work with diet and supplements ? How long were you treated the first time? -Pam- who may have missed more ??? I feel so out of touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Kristee, I now see you asked for more researched information. Try thyroidmanager and PubMed. Oh... Doris ???? or Jody ??? -Pam- linkless in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Pam, You didn't miss me, you were one of the first people to respond to me when first posted my story on 6/7. its message #15877... thanks for welcoming me again though! To answer your questions, I don't think that I was ever truely in remission. I treated it with ATD's going from 20mg tapazole down to 5 where I more or less stayed for three years until this relapse (I'm back up to 10mg and just had a blood test to see if thats working well enough - I don't feel better yet after a month and a half on the increased dose). My thyroid has stayed tender the whole time (painful to the touch) and the pain has gotten worse with this relapse. I understand this sypmtom is rare, but Elaine suggested it probably means I was never out the Graves', just having low symptoms during those years I was feeling better on Tap. When I was first diagnosed I looked into diet and supplements. I tried a low iodine diet but was frustrated at the seemingly contradictory information about iodine I was finding (take a lot/ take none) that once I started feeling better from the Tap. I got lazy and just ate whatever I wanted. As for supplements, I increased B vitamins, vitamin C, essential fatty acids, vitamin E and selenium. But I have taken them on and off, without any regularity. Your posts and others I've read on this site have gotten me really excited about trying a low iodine diet - you said that you " got serious " at about four years and that you attribute suppliments and a low iodine diet, being proactive in your treatment and studying your labwork to your remission. I am so happy to hear that you are in remission - it is very inspiring for me. When I first logged on to this group I was feeling so frustrated and out of control, and was considering " giving in " to the pressure to get RAI. Now with the information that I've gathered in this group and on my own, I'm starting to feel more in control, like I can HELP MYSELF with this. Its a great feeling. Making these dietary/lifestyle changes is HARD though. Thanks again Pam, and everyone else for your support. ~Jes > Hi , > > Welcome. I missed your story, as this wonderful new computer failed me big > time, and I have now had my first reformatting experience. < sigh> > > I see you were in remission and are having a relapse. > Since I am only in my fourth month of remission, do you have any advise as > to what I should NOT do. > > How did you treat your Graves' the first time, and now this time? Did you > also work with diet and supplements ? How long were you treated the first > time? > > -Pam- who may have missed more ??? I feel so out of touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Jes, Were you in group 2/3 weeks ago when Terry and Granny were talking about their tap and how there is a different brand of it and it was not working well? You may want to go to the archives and read from the last week in May. Terry gave a very thorough description of the differences and much better she is doing on the one than the new one, which she had to increase. Something to think about and investigate for yourself. I think Terry said she is better on the old brand again now. Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Jody, Yes, I did read those emails and Terry's descriptions of her experiences of the differences between the two types of generic Methimazole. It turns out that I did switch from Tapazole to generic Methimazole but I have been taking the " good " generic all along. Terry, I've been wondering if you followed up on that with the FDA or anything... ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Jes, I will send you my story tomorrow...I am in NY and it is 1:30 and have to be at the hospital by 9 for a 10 a.m. mri tomorrow...but I will get it out when I get home. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 OMG ! JES ! I DO remember now. <blush> So now my true confession. I hop to so many sites, with this group, I save intro letters until I remember each new person. But they are all gone now, along with everything else, including my mind I fear. = :-o I agree it is all too much to figure out diet and supplements and labs and... all at once. What I did was one thing at a time. The low iodine diet was hard to figure, because I agree we see different opinions. If you want to see if it works for you, give it a try for a month. I made a list of iodine rich foods and carried it to the grocery store with me. And checked each thing I picked up. This first trip took a LONG time. But after that, it was easy. And then as I went along, I found even more things to add to that darn list. All in all, it took a full month to just get that straightened out, but those wonderful labs and a dose reduction sold me on the idea. THEN, I worked on learning goitrogens. Turns out they are good , once you loose your taste for junk. AFTER you try the low iodine , then you may want to check out ithyroid.com for info on supplements. Or, maybe you can pick it up faster than I did. <grin> What about just starting with a good multi without iodine for now ? Better than nothing. Check and see, on the days you take vit.C, if you get more hyper on it. Some of us do, but not all. Gosh... I heard that 'R' word, and got all excited. :-) -Pam- who is so sorry I spaced out on you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi Kristee Welcome to the group. I can't really add much to what others have already said to you. Except to encourage you to continue to learn so you can make a good informed decision for you. Take Care Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi, How do you tell the difference between the good and the bad methimazdole? I'm taking methimzdole but don't know if it's good or bad yet. First blood test is next week, but I am feeling better... Thanks PS. Any new news on Elaine? buddybeluga wrote: > Hi Jody, > > Yes, I did read those emails and Terry's descriptions of her > experiences of the differences between the two types of generic > Methimazole. It turns out that I did switch from Tapazole to > generic Methimazole but I have been taking the " good " generic > all along. > > Terry, I've been wondering if you followed up on that with the FDA > or anything... > > ~ > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is > not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list does not have the > endorsement of > the listowner. I have no input as to what ads are attached to emails. > --------------------------------------------------------------------------------\ ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi and and all - All you can do is take a certain brand for a week or two and see what you feel like. That's how Terry first noticed something was different about one type of generic. Since I've been on the brand name for 23 years, but noticed the same type of inconsistency, it got me to wondering about the expiration dates. It takes time to go with a hunch and report back. I apologize for the delay. A year ago, while taking Tap with a remaining shelf life of about a year and a half, I was down to 3 mg per day and low T4 and T3. Also a year ago I changed pharmacies, and started getting Tap that expired anywhere from 1 month to 6 months from date of purchase. Over the past year my levels have climbed, while I was increasing the Tap at the same time. At 15 mg per day, my T4 turned around and headed back down--is rock bottom normal range, but my T3 is still way up at the top of normal range. As I suspected the older meds might lack something the new meds still have in potency, I started taking a batch that is 3 times newer (back to expiration date of 1-1/2 years away). It has been 2 weeks now, and I will test my T4 and T3 levels again on Friday. Currently TSH is a moot point. The T4 should be rising a bit because I cut back to 12 mg per day of the newer meds. If the T3 has come down, it will answer a lot of questions. I am thinking the older the med gets, the less effective it is, perhaps in controlling the stronger T3--leading to kind of a T3 toxicosis in some patients? Just taking it slow and steady, which is why I haven't gotten back to anyone on this yet. We still need more input on brand vs generic though. Since Terry and I are in the same state, we are going to look into the regulations and requirements for brand name vs generic, or potency problems as the meds age. We both have heavy schedules this week, but it's in the works. I'm not familiar with PTU. Has anyone noticed whether there is a brand name or several generics floating around out there for that ATD? Maybe if some of you feel like the meds aren't working as good as they used to, or are too strong now, or you can't stabilize........ you might ask your pharmacist about the source of the prescription, and an accurate expiration date. Best Wishes, Granny Chris > > > Hi Jody, > > > > Yes, I did read those emails and Terry's descriptions of her > > experiences of the differences between the two types of generic > > Methimazole. It turns out that I did switch from Tapazole to > > generic Methimazole but I have been taking the " good " generic > > all along. > > > > Terry, I've been wondering if you followed up on that with the FDA > > or anything... > > > > ~ > > > > > > ------------------------------------- > > The Graves' list is intended for informational purposes only and is > > not intended to replace expert medical care. > > Please consult your doctor before changing or trying new treatments. > > ---------------------------------------- > > DISCLAIMER > > > > Advertisments placed on this yahoo groups list does not have the > > endorsement of > > the listowner. I have no input as to what ads are attached to emails. > > ------------------------------------------------------------------ -------------------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Pam, do you have a convenient list you can share? Thanks, Terry > > Reply-To: graves_support > Date: Tue, 18 Jun 2002 22:20:16 -0700 > To: <graves_support > > Subject: Re: Re: thoughts & a question > > I made a list of iodine rich foods and carried it to the grocery store with > me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 , I want to caution that this was MY experience, and the " bad " brand may NOT be bad, it may just be that taking it coincided with a change in my GD that I can't explain...but that said, I found that the Par brand (little flat pills with EM5 I think on them) was what worked for me, for a long time. It was after the pharmacy switched to Eon brand, which are rounder and say E205 on them, that I started having trouble. Since I'm still not back to " normal " after several weeks back on the Par brand, I of course doubt myself. Next week, when I am a little less busy, I intend to pursue getting the Eon pills tested for potency. Granny and I have agreed to work on this question together, along with expiration date questions. Terry > > Reply-To: graves_support > Date: Wed, 19 Jun 2002 10:07:06 -0600 > To: graves_support > Subject: Re: Re: thoughts & a question > > Hi, > How do you tell the difference between the good and the bad > methimazdole? I'm taking methimzdole but don't know if it's good or bad > yet. First blood test is next week, but I am feeling better... > > Thanks > > > PS. Any new news on Elaine? > > buddybeluga wrote: > >> Hi Jody, >> >> Yes, I did read those emails and Terry's descriptions of her >> experiences of the differences between the two types of generic >> Methimazole. It turns out that I did switch from Tapazole to >> generic Methimazole but I have been taking the " good " generic >> all along. >> >> Terry, I've been wondering if you followed up on that with the FDA >> or anything... >> >> ~ >> >> >> ------------------------------------- >> The Graves' list is intended for informational purposes only and is >> not intended to replace expert medical care. >> Please consult your doctor before changing or trying new treatments. >> ---------------------------------------- >> DISCLAIMER >> >> Advertisments placed on this yahoo groups list does not have the >> endorsement of >> the listowner. I have no input as to what ads are attached to emails. >> ----------------------------------------------------------------------------- >> --------- >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi Terry and all - That Top 20 list was great. You put a lot of work into that - thanks so much. Sure, there could be any number of reasons for the differences you noticed in the pills. Nothing's a definite in this game. That's why we're still working on it. I'm glad we're not afraid to toss something into the ring just because we can't positively prove that such and such might be causing something. Otherwise, there'd be no progress at all. I'm so sorry for the delay in getting back to everyone on this. I've had to hesitate in saying too much until I test again. Besides, ATDs take adjustment time. It can take up to several days for a change in dosage to be felt, then can take a few weeks for the changes to " settle in. " I was so excited to find what might be another piece of the puzzle (the section on not being able to stabilize on ATDs), that I started researching the chemical make-up of the different drugs. Sure couldn't find much, though. And when I did, I couldn't understand half of it. I'm so grateful that someone ventured to say something about the meds and possible differences. I was at the end of my rope trying to find SOMETHING that would explain my requirement lately for such a high amount of meds. I went from 1 bottle of 100 every 3 months, to 1 bottle every month, the increase starting in May of last year. I went through everything with a fine-toothed comb, and could find nothing to explain the T3 problem. I may have to go back to looking, but I'll sure be a bit smarter about meds and their expiration dates, and chemical make-up. My doctor says it could be ANYTHING, so I'm looking EVERYWHERE. I want to find out the guidelines/laws for the way generics are required to " measure up " to the brand name they are imitating. Am also personally looking into pharmacy labeling. I remember when they first came out with generic fabric softener. The brand name worked great with one capful. But the generic left static in the clothes unless you used 2 or 3 capsful. It was watered down. Surely that can't be the case with generic medication requirements, but then why is the generic offered in 20 mg pills? There could be any number of reasons, but......... My T3 might be lower because the fresher meds are working better. Or my T3 could be lower because it might normally trail behind the T4 levels--much like the way the TSH seems to trail behind the thyroid levels. However, last October, I had episodes of atrial and ventricular fibrillation with a perfect level of Free T4. Turns out the T3 was way over the top. This was a new experience, all since taking the meds that were closer to expiring. Then again, my T3 might still be high when I test (sure can't tell from symptoms) and I'll have to look at something else. But I'm grateful someone brought this up, because it give us more possibilities. Brand vs generic - I have found that there are different chemical names for the brand and at least one of the generic meds. 1-Methylimidazole-2-thiol is what is listed on my mfr insert for the brand name Tapazole. It says, Quote - It [Tapazole] differs chemically from the drugs of the thiouracil series [PTU] primarily because it has a 5- instead of 6- membered ring. End quote. I found on the following formula posted on the internet as being one of the generic chemical descriptions: 1-methyl-2-mercaptoimidazole Wonder what happened to the " thio " which refers to sulfur, which is a goitrogen. Does anyone have the mfr insert for a generic? There used to be an ATD called methyl-thiouracil, but it was discontinued. Not sure of the reason. They also used to treat hyperthyroidism with sodium fluoride, in the 1930's. Does anyone know how to get more detailed info about ATD " ingredients " and chemical make-up? Thanks, Chris ------------ > > > >> Hi Jody, > >> > >> Yes, I did read those emails and Terry's descriptions of her > >> experiences of the differences between the two types of generic > >> Methimazole. It turns out that I did switch from Tapazole to > >> generic Methimazole but I have been taking the " good " generic > >> all along. > >> > >> Terry, I've been wondering if you followed up on that with the FDA > >> or anything... > >> > >> ~ > >> > >> > >> ------------------------------------- > >> The Graves' list is intended for informational purposes only and is > >> not intended to replace expert medical care. > >> Please consult your doctor before changing or trying new treatments. > >> ---------------------------------------- > >> DISCLAIMER > >> > >> Advertisments placed on this yahoo groups list does not have the > >> endorsement of > >> the listowner. I have no input as to what ads are attached to emails. > >> ----------------------------------------------------------------- ------------ > >> --------- > >> > >> Quote Link to comment Share on other sites More sharing options...
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