Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 In the typical Hashi's case the thyroid is [eventually] eliminated without the risks associated with surgery or radiation. With what to me appear to wild swings in TSH readings and hyper symptoms in very short periods of time with small T4 dosage changes I really don't know what to say. Although surgical or radioactive destruction of the thyroid gland are not to my knowledge done in most cases of Hashimoto's I guess that if you have extreme difficulties in getting your T4 dose to a level that will allow you to maintain a reasonable TSH and symptom level then that might be an option you would want to discuss with your doctor. I guess I really should be a doctor. Then you could pay me a ton of money to tell you I really don't have a clue what's going on! [ggg] Best, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sat Jan 1, 2011 12:29 pm (PST) > > > > > Thank you . It is confusing isn't it? I understand what you're > saying about dosing being a PITA. Because of that, I'm surprised > doctors don't suggest removing the thyroid surgically while we're > younger, rather than waiting until we're older, when surgery could be > riskier. Since we know it isn't going to get better, is there really a > benefit to keeping it when it seems unlikely it can remain stable? > > I have a friend who had a non-malignant growth on her thyroid, and > surgery was done to remove it. She wasn't having trouble breathing or > swallowing, so maybe it depends on the doctor. > > I don't think the Mayo Clinic doctor had a clue about the swelling > either, since he said " maybe a time or two, " when I asked him if he'd > seen this type of swelling before. It was not a definitive answer. > Maybe I'm just weird. When I go back to the endocrinologist here, it > will be interesting to hear what he has to say about it. > > I'm curious about how these doctors will respond to the fact that I > canceled the biopsy here because I was tired of waiting, and had it > done at the Mayo Clinic. I would much rather have had the diagnosis > here, but the Mayo Clinic did in three days what these doctors > couldn't or wouldn't do in four and one half months. > > Thanks for the good wishes and for writing back. Happy New Year to you > and yours also. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Here's some info. I hope it helps. http://www.drlowe.com/QandA/askdrlowe/antibody.htm <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Hahahaha! Now you've got it . That's the first requirement of current doctors. <>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: Sunday, January 2, 2011, 10:20 AM In the typical Hashi's case the thyroid is [eventually] eliminated without the risks associated with surgery or radiation. With what to me appear to wild swings in TSH readings and hyper symptoms in very short periods of time with small T4 dosage changes I really don't know what to say. Although surgical or radioactive destruction of the thyroid gland are not to my knowledge done in most cases of Hashimoto's I guess that if you have extreme difficulties in getting your T4 dose to a level that will allow you to maintain a reasonable TSH and symptom level then that might be an option you would want to discuss with your doctor. I guess I really should be a doctor. Then you could pay me a ton of money to tell you I really don't have a clue what's going on! [ggg] Best, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sat Jan 1, 2011 12:29 pm (PST) > > > > > Thank you . It is confusing isn't it? I understand what you're > saying about dosing being a PITA. Because of that, I'm surprised > doctors don't suggest removing the thyroid surgically while we're > younger, rather than waiting until we're older, when surgery could be > riskier. Since we know it isn't going to get better, is there really a > benefit to keeping it when it seems unlikely it can remain stable? > > I have a friend who had a non-malignant growth on her thyroid, and > surgery was done to remove it. She wasn't having trouble breathing or > swallowing, so maybe it depends on the doctor. > > I don't think the Mayo Clinic doctor had a clue about the swelling > either, since he said " maybe a time or two, " when I asked him if he'd > seen this type of swelling before. It was not a definitive answer. > Maybe I'm just weird. When I go back to the endocrinologist here, it > will be interesting to hear what he has to say about it. > > I'm curious about how these doctors will respond to the fact that I > canceled the biopsy here because I was tired of waiting, and had it > done at the Mayo Clinic. I would much rather have had the diagnosis > here, but the Mayo Clinic did in three days what these doctors > couldn't or wouldn't do in four and one half months. > > Thanks for the good wishes and for writing back. Happy New Year to you > and yours also. > > Barb ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 " I guess I really should be a doctor. Then you could pay me a ton of money to tell you I really don't have a clue what's going on! [ggg] LOL! I would rather pay you, Chuck, Roni, and others here, than my local doctors . At least you're not indifferent like they are. I'v actually learned more here than I have from them. Barb Re: Good News hypothyroidism Date: Sunday, January 2, 2011, 10:20 AM In the typical Hashi's case the thyroid is [eventually] eliminated without the risks associated with surgery or radiation. With what to me appear to wild swings in TSH readings and hyper symptoms in very short periods of time with small T4 dosage changes I really don't know what to say. Although surgical or radioactive destruction of the thyroid gland are not to my knowledge done in most cases of Hashimoto's I guess that if you have extreme difficulties in getting your T4 dose to a level that will allow you to maintain a reasonable TSH and symptom level then that might be an option you would want to discuss with your doctor. I guess I really should be a doctor. Then you could pay me a ton of money to tell you I really don't have a clue what's going on! [ggg] Best, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sat Jan 1, 2011 12:29 pm (PST) > > > > > Thank you . It is confusing isn't it? I understand what you're > saying about dosing being a PITA. Because of that, I'm surprised > doctors don't suggest removing the thyroid surgically while we're > younger, rather than waiting until we're older, when surgery could be > riskier. Since we know it isn't going to get better, is there really a > benefit to keeping it when it seems unlikely it can remain stable? > > I have a friend who had a non-malignant growth on her thyroid, and > surgery was done to remove it. She wasn't having trouble breathing or > swallowing, so maybe it depends on the doctor. > > I don't think the Mayo Clinic doctor had a clue about the swelling > either, since he said " maybe a time or two, " when I asked him if he'd > seen this type of swelling before. It was not a definitive answer. > Maybe I'm just weird. When I go back to the endocrinologist here, it > will be interesting to hear what he has to say about it. > > I'm curious about how these doctors will respond to the fact that I > canceled the biopsy here because I was tired of waiting, and had it > done at the Mayo Clinic. I would much rather have had the diagnosis > here, but the Mayo Clinic did in three days what these doctors > couldn't or wouldn't do in four and one half months. > > Thanks for the good wishes and for writing back. Happy New Year to you > and yours also. > > Barb ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 It all sounds very depressing and frightening to me Roni. I don't know where to find a doctor who is qualified and interested enough to try anything different. Maybe having no thyroid would be better. At least after the thyroid is removed there wouldn't be swelling caused by antibodies, which according to the link you sent could affect vision and who knows what else. My doctors wouldn't even do an antibody test. Now that I've gone elsewhere and they will see I have Hashimoto's, maybe they will, but what good does it do to know the antibodies are high, if there is no way to lower them? Since I've read this is the most common form of hypothyroidism, which is a common condition, it seems like doctors would have more knowledge of how to treat it. They sure aren't making any money by prescribing a generic medication, so I don't see how it benefits them other than to get patients out of the office. My Dad had his thyroid removed when he was in his early twenties. I think it had been overactive, because he was given a radioactive cocktail, and doctors say that indicates it was. He lived the majority of his life on thyroid replacement medication. He wasn't overweight, and didn't have any of the problems associated with Hashimoto's. He died from unassociatd causes when he was almost 80. Barb Re: Good News Here's some info. I hope it helps. http://www.drlowe.com/QandA/askdrlowe/antibody.htm <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 I always feel I learn something here. Its ben one of my biggest helpers. <>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: Sunday, January 2, 2011, 10:20 AM In the typical Hashi's case the thyroid is [eventually] eliminated without the risks associated with surgery or radiation. With what to me appear to wild swings in TSH readings and hyper symptoms in very short periods of time with small T4 dosage changes I really don't know what to say. Although surgical or radioactive destruction of the thyroid gland are not to my knowledge done in most cases of Hashimoto's I guess that if you have extreme difficulties in getting your T4 dose to a level that will allow you to maintain a reasonable TSH and symptom level then that might be an option you would want to discuss with your doctor. I guess I really should be a doctor. Then you could pay me a ton of money to tell you I really don't have a clue what's going on! [ggg] Best, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sat Jan 1, 2011 12:29 pm (PST) > > > > > Thank you . It is confusing isn't it? I understand what you're > saying about dosing being a PITA. Because of that, I'm surprised > doctors don't suggest removing the thyroid surgically while we're > younger, rather than waiting until we're older, when surgery could be > riskier. Since we know it isn't going to get better, is there really a > benefit to keeping it when it seems unlikely it can remain stable? > > I have a friend who had a non-malignant growth on her thyroid, and > surgery was done to remove it. She wasn't having trouble breathing or > swallowing, so maybe it depends on the doctor. > > I don't think the Mayo Clinic doctor had a clue about the swelling > either, since he said " maybe a time or two, " when I asked him if he'd > seen this type of swelling before. It was not a definitive answer. > Maybe I'm just weird. When I go back to the endocrinologist here, it > will be interesting to hear what he has to say about it. > > I'm curious about how these doctors will respond to the fact that I > canceled the biopsy here because I was tired of waiting, and had it > done at the Mayo Clinic. I would much rather have had the diagnosis > here, but the Mayo Clinic did in three days what these doctors > couldn't or wouldn't do in four and one half months. > > Thanks for the good wishes and for writing back. Happy New Year to you > and yours also. > > Barb ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 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, .. .. > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News> > matchermaam <matchermaam> > > > Sun Jan 2, 2011 11:30 am (PST) > > > > Here's some info. I hope it helps. > > http://www.drlowe.com/QandA/askdrlowe/antibody.htm > <http://www.drlowe.com/QandA/askdrlowe/antibody.htm> > > <>Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 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, .. .. > > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sun Jan 2, 2011 7:45 pm (PST) > > > > > It all sounds very depressing and frightening to me Roni. I don't know > where to find a doctor who is qualified and interested enough to try > anything different. Maybe having no thyroid would be better. At least > after the thyroid is removed there wouldn't be swelling caused by > antibodies, which according to the link you sent could affect vision > and who knows what else. My doctors wouldn't even do an antibody test. > Now that I've gone elsewhere and they will see I have Hashimoto's, > maybe they will, but what good does it do to know the antibodies are > high, if there is no way to lower them? > > Since I've read this is the most common form of hypothyroidism, which > is a common condition, it seems like doctors would have more knowledge > of how to treat it. They sure aren't making any money by prescribing a > generic medication, so I don't see how it benefits them other than to > get patients out of the office. > > My Dad had his thyroid removed when he was in his early twenties. I > think it had been overactive, because he was given a radioactive > cocktail, and doctors say that indicates it was. He lived the majority > of his life on thyroid replacement medication. He wasn't overweight, > and didn't have any of the problems associated with Hashimoto's. He > died from unassociatd causes when he was almost 80. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 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, .. .. > > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Sun Jan 2, 2011 7:45 pm (PST) > > > > > It all sounds very depressing and frightening to me Roni. I don't know > where to find a doctor who is qualified and interested enough to try > anything different. Maybe having no thyroid would be better. At least > after the thyroid is removed there wouldn't be swelling caused by > antibodies, which according to the link you sent could affect vision > and who knows what else. My doctors wouldn't even do an antibody test. > Now that I've gone elsewhere and they will see I have Hashimoto's, > maybe they will, but what good does it do to know the antibodies are > high, if there is no way to lower them? > > Since I've read this is the most common form of hypothyroidism, which > is a common condition, it seems like doctors would have more knowledge > of how to treat it. They sure aren't making any money by prescribing a > generic medication, so I don't see how it benefits them other than to > get patients out of the office. > > My Dad had his thyroid removed when he was in his early twenties. I > think it had been overactive, because he was given a radioactive > cocktail, and doctors say that indicates it was. He lived the majority > of his life on thyroid replacement medication. He wasn't overweight, > and didn't have any of the problems associated with Hashimoto's. He > died from unassociatd causes when he was almost 80. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Barb, You wrote: > ... Maybe having no thyroid would be better.... For many, complete thyroid replacement is much more comfortable than the instability of the Hashimoto's roller coaster. > ... but what good does it do to know the antibodies are high, if > there is no way to lower them? It sometimes helps know how to interpret borderline, variable, or inconsistent test results. Since the treatment is essentially the same, with or without antibodies, for most of us the presence of antibodies can be safely assumed without wasting money on another test. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 So if I'm understanding you right Chuck, there won't be a need for antibody tests in the future. That makes sense. The roller coaster doesn't sound like much fun, but surgery doesn't either. It would just be easier after recovery. There must be some reason doctors don't recommend it. Is it that risky? I know all surgery is risky, but so is life. Could it be part of trying to keep health care costs down, that no surgery be performed unless absolutely necessary? I know in the past lots of patients have had elective surgery that was covered by insurance. Barb Re: Good News Barb, You wrote: > ... Maybe having no thyroid would be better.... For many, complete thyroid replacement is much more comfortable than the instability of the Hashimoto's roller coaster. > ... but what good does it do to know the antibodies are high, if > there is no way to lower them? It sometimes helps know how to interpret borderline, variable, or inconsistent test results. Since the treatment is essentially the same, with or without antibodies, for most of us the presence of antibodies can be safely assumed without wasting money on another test. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 There is a " thyroidless " group here on in which there are folks discussing the difficult time they are having trying to live without their thyroids. For them, feeling good is not always as easy as just taking a pill. Also keep in mind that without a functioning thyroid it's just a pill that stands between you and death. Many people with Hashis live all their lives with functioning (albeit poorly) thyroid glands. One thing that helps your thyroid is to make sure you have the optimal vitamin/mineral and nutritional support it needs. Marla > > ... Maybe having no thyroid would be better.... > > For many, complete thyroid replacement is much more comfortable than the > instability of the Hashimoto's roller coaster. > > > ... but what good does it do to know the antibodies are high, if > > there is no way to lower them? > > It sometimes helps know how to interpret borderline, variable, or > inconsistent test results. Since the treatment is essentially the same, > with or without antibodies, for most of us the presence of antibodies > can be safely assumed without wasting money on another test. > > Chuck > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Getting depressed and frightened are the two things you really don't want to allow yourself to do. Both of them only exacerbaate any problem in the body - they are Stress! I would try to make sure you are not eating any soy. It's found in almost any processed food including bread, so you'll need to read labels. Also, try to stay away from goitrogens at this time till you straighten out your thyroid. Here's some info on it. http://forums.about.com/n/pfx/forum.aspx?tsn=2 & nav=messages & webtag=ab-thyroid & ti\ d=32370 http://en.wikipedia.org/wiki/Goitrogen I don't know what else to suggest. If you don't have cancer, in my opinion, I would not have the thyroid removed. The thyroid pretty much controls the whole body, and is a very important organ. The main thing is not to panic. This is not an acute situation. Email me directly I may have one more suggestion for you. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 , 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@...> Subject: Re: Good News hypothyroidism 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, .. .. > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Good%20News> > matchermaam <matchermaam> > > > Sun Jan 2, 2011 11:30 am (PST) > > > > Here's some info. I hope it helps. > > http://www.drlowe.com/QandA/askdrlowe/antibody.htm > <http://www.drlowe.com/QandA/askdrlowe/antibody.htm> > > <>Roni ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Surgery should always be done as a last resort. I have had surgeons even tell me that. Anyone who wants to operate and remove an important organ of the body unless it is imperitive to do so, in my opinion is very suspect. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > ... Maybe having no thyroid would be better.... For many, complete thyroid replacement is much more comfortable than the instability of the Hashimoto's roller coaster. > ... but what good does it do to know the antibodies are high, if > there is no way to lower them? It sometimes helps know how to interpret borderline, variable, or inconsistent test results. Since the treatment is essentially the same, with or without antibodies, for most of us the presence of antibodies can be safely assumed without wasting money on another test. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Thanks Marla. You're right. Since I have seen so much written about most people taking a pill a day and being fine, I don't hear about those struggling to survive without a thyroid. You make very good points, and I appreciate your input. Barb Re: Good News There is a " thyroidless " group here on in which there are folks discussing the difficult time they are having trying to live without their thyroids. For them, feeling good is not always as easy as just taking a pill. Also keep in mind that without a functioning thyroid it's just a pill that stands between you and death. Many people with Hashis live all their lives with functioning (albeit poorly) thyroid glands. One thing that helps your thyroid is to make sure you have the optimal vitamin/mineral and nutritional support it needs. Marla > > ... Maybe having no thyroid would be better.... > > For many, complete thyroid replacement is much more comfortable than the > instability of the Hashimoto's roller coaster. > > > ... but what good does it do to know the antibodies are high, if > > there is no way to lower them? > > It sometimes helps know how to interpret borderline, variable, or > inconsistent test results. Since the treatment is essentially the same, > with or without antibodies, for most of us the presence of antibodies > can be safely assumed without wasting money on another test. > > Chuck > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 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. I'm definitely not panicking, or even depressed or frightened now. I'm very grateful to have received the good news that the biopsy was benign. Some of what I read was frightening, because it painted such a negative picture of life with Hashimoto's. Fortunately I haven't experienced very much of what was described so far. Since every person's experience is different, maybe it won't be as difficult to regulate as it is for some. At least I have hope that it may not be. Barb Re: Good News Getting depressed and frightened are the two things you really don't want to allow yourself to do. Both of them only exacerbaate any problem in the body - they are Stress! I would try to make sure you are not eating any soy. It's found in almost any processed food including bread, so you'll need to read labels. Also, try to stay away from goitrogens at this time till you straighten out your thyroid. Here's some info on it. http://forums.about.com/n/pfx/forum.aspx?tsn=2 & nav=messages & webtag=ab-thyroid & ti\ d=32370 http://en.wikipedia.org/wiki/Goitrogen I don't know what else to suggest. If you don't have cancer, in my opinion, I would not have the thyroid removed. The thyroid pretty much controls the whole body, and is a very important organ. The main thing is not to panic. This is not an acute situation. Email me directly I may have one more suggestion for you. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 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 Re: Good News Surgery should always be done as a last resort. I have had surgeons even tell me that. Anyone who wants to operate and remove an important organ of the body unless it is imperitive to do so, in my opinion is very suspect. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > ... Maybe having no thyroid would be better.... For many, complete thyroid replacement is much more comfortable than the instability of the Hashimoto's roller coaster. > ... but what good does it do to know the antibodies are high, if > there is no way to lower them? It sometimes helps know how to interpret borderline, variable, or inconsistent test results. Since the treatment is essentially the same, with or without antibodies, for most of us the presence of antibodies can be safely assumed without wasting money on another test. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 What I don't know is how those people who lived decades without thyroids struggled or suffered. LOL! I just read what I wrote, and thought it was pretty funny, since no one gets more than one. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 I'm glad that you're feeling a bit better about all this. There's no queston that it is a P.I.T.A, but such is life and it things could be a whole lot worse as my Grandma used to say. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Yes, that's pretty funny. You should see some of the things I write. I cringe when I read them. One night it was late and I had taken my sleeping pill already and wanted to email my son. I didn't put a light on and thought I could do it with just the light from the coputer screen because I do touch typing, and don't look at the keys. Well, it seems I started out on the wrong keys and sent a bunch of gibberish. His reply was Whaaaat? Now That was funny. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Re: Good News hypothyroidism Date: Monday, January 3, 2011, 9:11 PM What I don't know is how those people who lived decades without thyroids struggled or suffered. LOL! I just read what I wrote, and thought it was pretty funny, since no one gets more than one. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Barb, You wrote: > > So if I'm understanding you right Chuck, there won't be a need for > antibody tests in the future. That makes sense. Probably not. Some hypoT people and their doctors do like to know when the antibodies are active, since they can come or go. I would tend to assume that is when the symptoms are getting worse. The treatment is the same; adjust the dosage to keep the TSH under control. > > The roller coaster doesn't sound like much fun, but surgery doesn't > either.... I was not suggesting surgery for Hashimoto's. The roller coaster phase is usually less than a year or two at the most. Once the gland is destroyed, you just have to find the right replacement dose. For people with Graves or hyperT, the preferred method for destroying the thyroid is with radioactive iodine. With thyroid cancer or potential cancer, they usually do surgery first and mop up with the iodine. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 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 That's for sure! Re: Good News I'm glad that you're feeling a bit better about all this. There's no queston that it is a P.I.T.A, but such is life and it things could be a whole lot worse as my Grandma used to say. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 The roller coaster phase is usually less than a year or two at the most. Once the gland is destroyed, you just have to find the right replacement dose. Well that's good to know Chuck. I had no idea how long it might take. It's surprising to me that so little is known about why it happens, and that there is no way to stop it. Barb Re: Good News Barb, You wrote: > > So if I'm understanding you right Chuck, there won't be a need for > antibody tests in the future. That makes sense. Probably not. Some hypoT people and their doctors do like to know when the antibodies are active, since they can come or go. I would tend to assume that is when the symptoms are getting worse. The treatment is the same; adjust the dosage to keep the TSH under control. > > The roller coaster doesn't sound like much fun, but surgery doesn't > either.... I was not suggesting surgery for Hashimoto's. The roller coaster phase is usually less than a year or two at the most. Once the gland is destroyed, you just have to find the right replacement dose. For people with Graves or hyperT, the preferred method for destroying the thyroid is with radioactive iodine. With thyroid cancer or potential cancer, they usually do surgery first and mop up with the iodine. Chuck Quote Link to comment Share on other sites More sharing options...
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