Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Most of the women in my family have lived multiple decades without any thyroid function. I have gone over one decade. My son is an example of one who has done well on T4 only following complete thyroidectomy and radioactive iodine follow-up. Chuck, Thanks for the all the information. I'm glad to know your son has done well following his surgery. I don't understand the part about binding enzymes, and also wonder about the quality of life of the women in your family who have lived multiple decades with no thyroid function. Barb Re: Good News Barb, You wrote: > > There seems to be agreement on this also Roni. I guess I didn't realize > how serious it is to not have a thyroid, since I know people who have > lived decades without one.... Most of the women in my family have lived multiple decades without any thyroid function. I have gone over one decade. My son is an example of one who has done well on T4 only following complete thyroidectomy and radioactive iodine follow-up. Most of the people that this list has shared with the thyroidless group have more going on than just missing thyroid function. For example, many seem to have T4-T3 conversion issues and need T3. The levothyroxine treatment is based on the assumption that the liver (mainly) and other organs will be able to efficiently convert the T4 taken orally into T3. This isn't true for about 5% of the hypoT population, based on the number of prescriptions for T4 only versus those with at least some T3. At least some fraction of that group converts to ample T3 but makes too much RT3, as Roni does. RT3 actually counteracts T3 by inertly filling T3 receptors. Some people convert T4 to T3 effectively but have overactive binding enzymes, which keep an excess fraction of both the T4 and T3 in a bound, storage state circulating in the blood. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Apparently a very large majority of hypo patients, including those with no thyroid do in fact just take one pill per day and live essentially perfectly normal lives. It's probably a little more important to avoid soy and goitrogens as much as practical; and to take the pill at the proper time WRT ingesting some products such as certain minerals but frankly [other than the soy] I don't really pay any attention to most of it. HOWEVER: As others have pointed out that's not true for everyone. A tiny percentage of patients go through hell on earth, literally. Some feel so horrible for so long that I worry they will consider exiting the entire mess; and no, I am not exaggerating. It will literally bring tears to my eyes to read the pleas of some patients and to have no reasonable response to give them. Too many times we just don't have any answers; although there is some small quantity of mostly anecdotal evidence that suggests some of the problems may be connected to an extended period of no treatment or under-treatment for hypothyroidism. Organ damage that occurs in such a case may take and extended time to correct. I can't really give you any authoritative advice as to whether you should consider an elective thyroidectomy. Many doctors are more reluctant now to remove organs that are considered none-threatening partially because sometimes we find an organ has a use that was not previously known. OTOH given the large number of people who live with no thyroid at all for many decades the chance of it being acutely necessary is probably low. It is one of the options you can consider; but right now you're still in the information gathering stage and such a decision can/should IMHO wait a while. In another post you referred to synthetic T4 or something similar. Please remember that ALL of the molecules of T4 in all of the medications as well as those manufactured by a healthy human or porcine thyroid gland are bioidentical. The packaging, method of delivery, binders, coloring agents and so on will vary but the basic chemical is all exactly the same. The bill is in the mail! [ggg] Luck, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Mon Jan 3, 2011 10:41 am (PST) > > > > > > IMHO the main reason we need to know if we have Hashimoto's is so we can > be prepared to react to the " roller coaster " effect we get as the > Hashimoto's waxes and wans as it typically does. > > I agree . That's obviously what was happening with me, because I > got so hyper and my heart rate was unusually high. The doctor at the > Mayo Clinic called it Tachycardia. I was also losing weight easily, > which as you know, is not normal with hypothyroidism. I may keep > taking one pill a day, and if I feel like that, cut back to 1/2 pill > for a while, since I have a better idea of what's going on. > > " Your personal case is IMHO in some ways similar to that of someone with > Hashimoto's; except that in your case the swings seem to occur much more > rapidly than I'd expect and from much smaller doses than I'd expect. > But what do I know...? " > > More than I do. LOL! > > I really hate this bump on my neck, and it seems there is nothing that > can be done about that either. I've read that taking thyroid > replacement hormone can sometimes make it smaller, or go away, but > mine didn't appear until I had been taking meds for about two months. > The bump is th multi-nodular goiter. Since the thyroid is going to be > destroyed, and practically impossible to regulate, I still don't > understand the benefit of having it. Wouldn't it be easy to regulate > with one pill a day, with no thyroid at all? > > Barb > > Re: Good News > > IMHO the main reason we need to know if we have Hashimoto's is so we can > be prepared to react to the " roller coaster " effect we get as the > Hashimoto's waxes and wans as it typically does. That unfortunately > means that your T4 titration dosage is a moving target and that you > should probably have more frequent lab tests to see how you're doing > with your T4. It also probably means that you need to pay closer > attention to your symptoms so you can try to catch the swings sooner. > > Those who are hypo but don't have Hashimoto's can typically titrate the > dosage until the lab results and symptoms are as desired and then > maintain that dosage for long periods of time; perhaps getting tested > only once per year. That just will not work if you have Hashimoto's. > Yes, it's a PITA; but by knowing you have it at least you have some way > to try to react to it. > > Your personal case is IMHO in some ways similar to that of someone with > Hashimoto's; except that in your case the swings seem to occur much more > rapidly than I'd expect and from much smaller doses than I'd expect. > But what do I know...? > > Luck, > > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Roni, I read a number of his responses to questions and HE IS in fact saying something different. He recommends against taking T4 alone, which is directly the opposite of nearly every main-stream doctor in the US, UK and a lot of other places. And I would suggest that you look closely at his statement again: .. > " ...Treatment with thyroid hormone usually suppresses anti-thyroid > antibodies and slows or stops the process of autoimmune thyroiditis. " .. I have NEVER found any credible source that suggests there is ANY way to " ...slow or stop the process of autoimmune thyroiditis " . As a matter of fact about the only credible suggestions you will find are steps you can take to avoid or lower the risk of triggering an attack; or possibly of lowering the intensity of a flare-up. NEVER any suggestion of curing [stopping the process] of autoimmune thyroiditis [Hashimoto's]. All of main-stream [allopathic] medicine suggests: YOU CAN'T DO THAT, PERIOD. He does very highly recommend T3; which while often not supported by main-stream medicine or credible research does IMHO have sufficient [mostly anecdotal] support that it seems to me to undoubtedly be a good idea FOR A MINORITY OF PATIENTS. You being a prime example; and there are a lot of others [although the percentage is small]. Regards, .. .. > > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News> > matchermaam <matchermaam> > > > Mon Jan 3, 2011 7:51 pm (PST) > > > > , the mainstream doctors also advocate using levothyroxine, so > he's not saying anything different actually. He also didn't say it > cures the hashimotos, only that it suppresses the antibodies. I've > read the mainstream sites and they pretty much do the same thing, so > in this instance he's right with them. > > I would like her to have the benefit of a Reverse T3 test. The reason > that for decades no one knew what was going on with me was that no one > tested for it. Doctors typically don't test for it, and if they don't > do the test they don't see it. So people like me, and I'm sure there > are a lot more than are known, get mistreated or undertreated on a > regular basis. I was lucky because it was my Rheumatologist that > agreed to test for it. He was shocked when he saw the results, but he > started me on the T3 protocol only, and I started to feel better right > away. > > > > <>Roni > Immortality exists! > It's called knowledge! > > Just because something isn't seen > doesn't mean it's not there<> > > > > From: <res075oh@... <mailto:res075oh%40verizon.net>> > Subject: Re: Good News > hypothyroidism > <mailto:hypothyroidism%40> > Date: Monday, January 3, 2011, 9:44 AM > > Roni, I'd be pretty cautious in taking Dr. Lowe's advice. A lot of what > he writes is not AFAIK supported by any credible research; and some > [such as the quote below] is I believe flatly contradicted by research: > . > > > " Treatment with thyroid hormone usually suppresses anti-thyroid > > antibodies and slows or stops the process of autoimmune thyroiditis. > " > . > There is to my knowledge no credible research anywhere supporting that > ANY product can effectively cure Hashimoto's [or at least put it into > permanent remission] as his statement seems to indicate. If anyone has > any credible support for such a claim I'd appreciate a link [one that > does not come from Dr. Lowe]. Everything I've seen indicates that > Hashimoto's eventually destroys the thyroid gland and treatment only > provides the T4 that the thyroid no longer provides in sufficient > quantity if at all. It does nothing to prevent the eventual destruction > of the thyroid gland. > > Further, I've seen a number of references to the research that has been > done comparing the results of taking T4 alone to taking a combination of > T4 and T3. The results typically do not show any improvement above > chance or placebo. > > We DO have quite a bit of anecdotal evidence that some people benefit > from a T4/T3 combination or T3 alone; but the number appears to be so > small that it is not picked up in the studies. You personally of course > apparently from all the evidence are one of those who DO need something > other than T4; but consider that for decades you couldn't get proper > treatment and I suspect that one of the reasons is that your condition > is so rare that your doctors had never even heard of it. > > I'd also be suspicious of any doctor who trolls the internet for > patients. I would think any established doctor who is effective in his > practice would have far too many patients already to need to spend the > time [or even have the time to spend] seeking out patients on the > internet. > > Regards, > > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 The funny thing is your last statement below is almost exactly what I practice with the exception that I try to avoid soy as much as practical. I do not seem to suffer any ill effects. HOWEVER: There are in fact a number of good reasons for all the warnings. Some things attack both the thyroid gland as well as the thyroxine in your body IIRC. Other things reduce T4 absorption. Thus they could lower the effectiveness of whatever thyroxine you have but also reduce the ability of a poorly functioning thyroid gland to produce enough hormone. This could provide additional variables to an already confusing situation, especially for those riding the Hashimoto's roller-coaster. IMHO it does not matter nearly as much for those on a full replacement dose or a stable titrated dose of T4 that hasn't needed to be changed for some time. The way I look at it is that if whatever I eat decreases the effectiveness of my T4 by 20% I can just take 20% more. There really doesn't seem to me to be much of a down-side to such a practice. If anyone sees a huge error in my logic please educate me. Regards, .. .. > > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Mon Jan 3, 2011 8:44 pm (PST) > > > > > Thanks for the links and the suggestions Roni. I will read the > information thoroughly. It's interesting that people here know more > about how to live with thyroid disease than doctors. Not one doctor > has mentioned making any changes in diet, even though I asked them. > They act like it doesn't make any difference as long as we eat things > in moderation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Most people [iMHO well over 90% and probably over 95%] take one T4 pill per day and do not suffer. There are unfortunately the exceptions, who often may suffer horribly. In any event you don't have a lot of choice since typically Hashimoto's completely destroys the thyroid gland eventually. And those exceptions can be the heart-rending ones. You haven't been here very long but if you hang around you'll find out what I mean. As Roni says you have to have thyroid hormone to live [ " natural " or synthetic]. Your body uses T3 which it makes from T4. T4 has a half life of about a week so you aren't going to get very sick if you miss a few days; as a matter of fact some people seem to go untreated for years. Of course they must have had some thyroid function or I would have expected them to go into myxedema coma and death. If you take T3 alone you may notice problems sooner since the half life is about a day. Unless you determine that you have a RT3 or other problem I'd suggest you try the T4 alone first. Luck, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Mon Jan 3, 2011 9:03 pm (PST) > > > > > There seems to be agreement on this also Roni. I guess I didn't > realize how serious it is to not have a thyroid, since I know people > who have lived decades without one. I thought the synthetic hormone > would do the job of keeping hormones in balance. > > What I don't know is how those people who lived decades without > thyroids struggled or suffered. My grandmother was one of them, and > she seemed cheerful, active, and unaffected. The key word of course is > seemed, because it's something we never talked about. Another person I > knew who didn't have a thyroid was entirely different. He moved slowly > and seemed depressed much of the time. Also, it is scary to think > about being dependent on a pill to live. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Chuck, if your family members have no thyroid function how are they converting the T4 to T3? <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > > There seems to be agreement on this also Roni. I guess I didn't realize > how serious it is to not have a thyroid, since I know people who have > lived decades without one.... Most of the women in my family have lived multiple decades without any thyroid function. I have gone over one decade. My son is an example of one who has done well on T4 only following complete thyroidectomy and radioactive iodine follow-up. Most of the people that this list has shared with the thyroidless group have more going on than just missing thyroid function. For example, many seem to have T4-T3 conversion issues and need T3. The levothyroxine treatment is based on the assumption that the liver (mainly) and other organs will be able to efficiently convert the T4 taken orally into T3. This isn't true for about 5% of the hypoT population, based on the number of prescriptions for T4 only versus those with at least some T3. At least some fraction of that group converts to ample T3 but makes too much RT3, as Roni does. RT3 actually counteracts T3 by inertly filling T3 receptors. Some people convert T4 to T3 effectively but have overactive binding enzymes, which keep an excess fraction of both the T4 and T3 in a bound, storage state circulating in the blood. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Mainstream doctors give T4 or something like Armour or T4 with Cytomel to patients with Hashimotos. Everybody's perspective is different, and what I see is essentially the same what you see is different. I'm very tired, so lets agree to disagree on this, O. K.? <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> > > From: <res075oh@... <mailto:res075oh%40verizon.net>> > Subject: Re: Good News > hypothyroidism > <mailto:hypothyroidism%40> > Date: Monday, January 3, 2011, 9:44 AM > > Roni, I'd be pretty cautious in taking Dr. Lowe's advice. A lot of what > he writes is not AFAIK supported by any credible research; and some > [such as the quote below] is I believe flatly contradicted by research: > . > > > " Treatment with thyroid hormone usually suppresses anti-thyroid > > antibodies and slows or stops the process of autoimmune thyroiditis. > " > . > There is to my knowledge no credible research anywhere supporting that > ANY product can effectively cure Hashimoto's [or at least put it into > permanent remission] as his statement seems to indicate. If anyone has > any credible support for such a claim I'd appreciate a link [one that > does not come from Dr. Lowe]. Everything I've seen indicates that > Hashimoto's eventually destroys the thyroid gland and treatment only > provides the T4 that the thyroid no longer provides in sufficient > quantity if at all. It does nothing to prevent the eventual destruction > of the thyroid gland. > > Further, I've seen a number of references to the research that has been > done comparing the results of taking T4 alone to taking a combination of > T4 and T3. The results typically do not show any improvement above > chance or placebo. > > We DO have quite a bit of anecdotal evidence that some people benefit > from a T4/T3 combination or T3 alone; but the number appears to be so > small that it is not picked up in the studies. You personally of course > apparently from all the evidence are one of those who DO need something > other than T4; but consider that for decades you couldn't get proper > treatment and I suspect that one of the reasons is that your condition > is so rare that your doctors had never even heard of it. > > I'd also be suspicious of any doctor who trolls the internet for > patients. I would think any established doctor who is effective in his > practice would have far too many patients already to need to spend the > time [or even have the time to spend] seeking out patients on the > internet. > > Regards, > > . ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 My thinking is to always take the least amount of anything that I absolutely have to take, not do what I want and then cover it with medication. This is a body we're talking about, and I think the engineering is very good, and I don't think we should try to reengineer it. <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: <res075oh@...> Subject: Re: Good News hypothyroidism Date: Tuesday, January 4, 2011, 4:44 PM The funny thing is your last statement below is almost exactly what I practice with the exception that I try to avoid soy as much as practical. I do not seem to suffer any ill effects. HOWEVER: There are in fact a number of good reasons for all the warnings. Some things attack both the thyroid gland as well as the thyroxine in your body IIRC. Other things reduce T4 absorption. Thus they could lower the effectiveness of whatever thyroxine you have but also reduce the ability of a poorly functioning thyroid gland to produce enough hormone. This could provide additional variables to an already confusing situation, especially for those riding the Hashimoto's roller-coaster. IMHO it does not matter nearly as much for those on a full replacement dose or a stable titrated dose of T4 that hasn't needed to be changed for some time. The way I look at it is that if whatever I eat decreases the effectiveness of my T4 by 20% I can just take 20% more. There really doesn't seem to me to be much of a down-side to such a practice. If anyone sees a huge error in my logic please educate me. Regards, .. .. > >     Posted by: " H " macbarb0503@... >     <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> >     westieabbey <westieabbey> > > >      Mon Jan 3, 2011 8:44 pm (PST) > > > > > Thanks for the links and the suggestions Roni. I will read the > information thoroughly. It's interesting that people here know more > about how to live with thyroid disease than doctors. Not one doctor > has mentioned making any changes in diet, even though I asked them. > They act like it doesn't make any difference as long as we eat things > in moderation. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I have no disagreement with that. <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: <res075oh@...> Subject: Re: Good News hypothyroidism Date: Tuesday, January 4, 2011, 5:01 PM Most people [iMHO well over 90% and probably over 95%] take one T4 pill per day and do not suffer. There are unfortunately the exceptions, who often may suffer horribly. In any event you don't have a lot of choice since typically Hashimoto's completely destroys the thyroid gland eventually. And those exceptions can be the heart-rending ones. You haven't been here very long but if you hang around you'll find out what I mean. As Roni says you have to have thyroid hormone to live [ " natural " or synthetic]. Your body uses T3 which it makes from T4. T4 has a half life of about a week so you aren't going to get very sick if you miss a few days; as a matter of fact some people seem to go untreated for years. Of course they must have had some thyroid function or I would have expected them to go into myxedema coma and death. If you take T3 alone you may notice problems sooner since the half life is about a day. Unless you determine that you have a RT3 or other problem I'd suggest you try the T4 alone first. Luck, .. .. >     Posted by: " H " macbarb0503@... >     <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> >     westieabbey <westieabbey> > > >      Mon Jan 3, 2011 9:03 pm (PST) > > > > > There seems to be agreement on this also Roni. I guess I didn't > realize how serious it is to not have a thyroid, since I know people > who have lived decades without one. I thought the synthetic hormone > would do the job of keeping hormones in balance. > > What I don't know is how those people who lived decades without > thyroids struggled or suffered. My grandmother was one of them, and > she seemed cheerful, active, and unaffected. The key word of course is > seemed, because it's something we never talked about. Another person I > knew who didn't have a thyroid was entirely different. He moved slowly > and seemed depressed much of the time. Also, it is scary to think > about being dependent on a pill to live. > > Barb ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 On 1/4/2011 7:12 PM, Roni Molin wrote: > Chuck, if your family members have no thyroid function how are they > converting the T4 to T3? That happens in all the peripheral tissues but particularly in the liver. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 LOL! The check is in the mail too . We've all heard that before. The information provided by everyone here is priceless. Thanks you so much! Barb Re: Good News > > IMHO the main reason we need to know if we have Hashimoto's is so we can > be prepared to react to the " roller coaster " effect we get as the > Hashimoto's waxes and wans as it typically does. That unfortunately > means that your T4 titration dosage is a moving target and that you > should probably have more frequent lab tests to see how you're doing > with your T4. It also probably means that you need to pay closer > attention to your symptoms so you can try to catch the swings sooner. > > Those who are hypo but don't have Hashimoto's can typically titrate the > dosage until the lab results and symptoms are as desired and then > maintain that dosage for long periods of time; perhaps getting tested > only once per year. That just will not work if you have Hashimoto's. > Yes, it's a PITA; but by knowing you have it at least you have some way > to try to react to it. > > Your personal case is IMHO in some ways similar to that of someone with > Hashimoto's; except that in your case the swings seem to occur much more > rapidly than I'd expect and from much smaller doses than I'd expect. > But what do I know...? > > Luck, > > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Oh. <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > Chuck, if your family members have no thyroid function how are they > converting the T4 to T3? That happens in all the peripheral tissues but particularly in the liver. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Roni, You wrote: > Oh. In response to my statement about T4 to T3 conversion: > > That happens in all the peripheral tissues but particularly in the liver. Even with a fully working thyroid, only about 1/4th of the T4-T3 conversion normally happens inside the gland. Ditto for RT3. The enzyme that performs that conversion is produced throughout the body but particularly in the liver, since it is the same enzyme that converts RT3 to T2 (ready for disposal or recycle). Thus, if that enzyme or its function is impaired, you get a double whammy: Less T3 and more RT3. There is another enzyme responsible for converting T4 to RT3. Thus, your RT3 problem could be due to too much of one conversion enzyme, not enough of the other, or perhaps both. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Thank you for clearing that up. It's so frustrating, not only to me, but to many patients, some on this group and some on others that the doctors we go to that are supposed to understand this condition for the most part don't, and we get mal treatment for so long. Â I'm sure these doctors would not think that if they bought clothing that was too large or too small for them that it would be all right. However, they see no problem in under or overmedicating patients. <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > Oh. In response to my statement about T4 to T3 conversion: > > That happens in all the peripheral tissues but particularly in the liver. Even with a fully working thyroid, only about 1/4th of the T4-T3 conversion normally happens inside the gland. Ditto for RT3. The enzyme that performs that conversion is produced throughout the body but particularly in the liver, since it is the same enzyme that converts RT3 to T2 (ready for disposal or recycle). Thus, if that enzyme or its function is impaired, you get a double whammy: Less T3 and more RT3. There is another enzyme responsible for converting T4 to RT3. Thus, your RT3 problem could be due to too much of one conversion enzyme, not enough of the other, or perhaps both. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 I'm sure the problem is also exacerbated by people having other issues and being given drugs that clear through the liver, and some of them take many medications. Eventually as the patient ages, the liver starts getting worn out, and then it's function is decreased. <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > > There seems to be agreement on this also Roni. I guess I didn't realize > how serious it is to not have a thyroid, since I know people who have > lived decades without one.... Most of the women in my family have lived multiple decades without any thyroid function. I have gone over one decade. My son is an example of one who has done well on T4 only following complete thyroidectomy and radioactive iodine follow-up. Most of the people that this list has shared with the thyroidless group have more going on than just missing thyroid function. For example, many seem to have T4-T3 conversion issues and need T3. The levothyroxine treatment is based on the assumption that the liver (mainly) and other organs will be able to efficiently convert the T4 taken orally into T3. This isn't true for about 5% of the hypoT population, based on the number of prescriptions for T4 only versus those with at least some T3. At least some fraction of that group converts to ample T3 but makes too much RT3, as Roni does. RT3 actually counteracts T3 by inertly filling T3 receptors. Some people convert T4 to T3 effectively but have overactive binding enzymes, which keep an excess fraction of both the T4 and T3 in a bound, storage state circulating in the blood. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 On 1/5/2011 3:23 PM, Roni Molin wrote: > I'm sure the problem is also exacerbated by people having other issues > and being given drugs that clear through the liver, and some of them > take many medications. Eventually as the patient ages, the liver starts > getting worn out, and then it's function is decreased. Failures of the kidneys and adrenals can do the same thing. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Yes, I know. It's only one of the reasons I take as few medications for the shortest amount of time I can. <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > I'm sure the problem is also exacerbated by people having other issues > and being given drugs that clear through the liver, and some of them > take many medications. Eventually as the patient ages, the liver starts > getting worn out, and then it's function is decreased. Failures of the kidneys and adrenals can do the same thing. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Great News Matt, Keep us posted how you do with this Dr. and put his name and number in the Database section so others can find him. Co-Moderator Phil > From: Matt <mattjon332@...> > Subject: Good news > > Date: Tuesday, January 25, 2011, 12:10 PM > My new Dr seems to be very open and > listens to his patients, I have his > phone # and email, and he literally responded to my email > yesterday within a > few minutes. He says he treats about 80% based on > clinical and 20% based on > labs which is the opposite of most Dr's, so even if labs > are " normal " they > may not be normal for everyone. He believes the way > people feel is more > important then the specific range marker. > > Friday I will get blood draws, 13 vials worth for extensive > labs it will > take 12-14 days to process them. One of his initial > concerns was estrogen > (he tests all 3 versions) levels, and he is curious about > my T3 levels based > on my prior T4/TSH labs. He also noticed that my > calcium was high > (normal) initially on my first labs (I think I was taking > some calcium back > then) and had went up above the normal range during my > medically supervised > diet (I was on calcium for sure during that, they had me > stop and reduced my > Vitamin D when we found that), and since my cortisol levels > are in the low > range that this is one of the symptoms of s but > there was not enough > data yet to conclude anything. I don't think I have > been having more then > 3-400mg of calcium for a while now, so I will be interested > in the new labs > results. > > Overall I think this may take some time to work through, > but I do think I am > with the right Dr now. > > BR//Matt > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Very good news, Ciro. Thanks for sharing your knowledge and research with the rest of us. This is certainly a big breakthrough in the way science has been looking into stopping Gleevec after a few years of being PCRU. It is good to know of any advances being made and very enlightening to those of us looking for a way out of taking drugs the rest of lives. Some are willing to do that, but others are afraid of the outcome should they relapse and that is really something that needs more research before everyone will latch on to it. Keep reading and sharing & God bless. Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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