Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Hi, H. & Hud, re: 's syndrome: >I was intrigued by your mention of 's Syndrome. I did some checking >and discovered an article by Barrett, MD, on a web site called >Quackwatch. He totally discredits 's Syndrome, though he is suspect >with me because he also disparages Gulf War Illness. But, given that there >is some controversy associated with 's Syndrome, and given that it is >not widely known, even in the medical community, how did you go about >getting >a physician who would take it seriously, and how much did it cost you to >get >it diagnosed? Also, I am interested in how your Chronic Fatigue or FM was >affected by your successful treatment of the 's Syndrome. The two >conditions seem to have a lot of overlap as far as symptoms go, so I was >wondering if 's Syndrome was responsible for the bigger part of your >symptomology. One of my earlier dr.s an endocrinologist, tried me first thing on Cytomel, a very small dose (one 12.5 mcg tab/day). According to him, this dose would supplement normal thyroid production of thyroid hormone, rather than suppressing and replacing it as a larger dose would. The idea was that if I did better on this protocol, then 's Syndrome would be indicated, and therapeutic doses of TH would be tested. If (as happened) there was no change, then that's the wrong track and try other things that are indicated in CFS - his next option being DHEA, which did make me improve significantly for many months. Jerry BTW for those who want to look up 's, don't confuse 's Syndrome with 's Disease, which is abnormal copper accumulation. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 Jerry, I believe I was tested for 's early in my illness. It was during an 18 month period when I consulted every type of physician and was unable to get a prognosis. I eventually compiled a list of every possible illness I could have by reading the merck manual cover to cover (2000 pages?). s was one of the remote possibilities. I believe my gastroenterologist tested for it by sticking a telescopic device down my stomach and taking a biopsy. Steve B. Re: 's syndrome > Hi, H. & Hud, > re: 's syndrome: > > >I was intrigued by your mention of 's Syndrome. I did some checking > >and discovered an article by Barrett, MD, on a web site called > >Quackwatch. He totally discredits 's Syndrome, though he is suspect > >with me because he also disparages Gulf War Illness. But, given that there > >is some controversy associated with 's Syndrome, and given that it is > >not widely known, even in the medical community, how did you go about > >getting > >a physician who would take it seriously, and how much did it cost you to > >get > >it diagnosed? Also, I am interested in how your Chronic Fatigue or FM was > >affected by your successful treatment of the 's Syndrome. The two > >conditions seem to have a lot of overlap as far as symptoms go, so I was > >wondering if 's Syndrome was responsible for the bigger part of your > >symptomology. > > One of my earlier dr.s an endocrinologist, tried me first thing on Cytomel, > a very small dose (one 12.5 mcg tab/day). According to him, this dose would > supplement normal thyroid production of thyroid hormone, rather than > suppressing and replacing it as a larger dose would. The idea was that if I > did better on this protocol, then 's Syndrome would be indicated, and > therapeutic doses of TH would be tested. If (as happened) there was no > change, then that's the wrong track and try other things that are indicated > in CFS - his next option being DHEA, which did make me improve significantly > for many months. > > Jerry > > BTW for those who want to look up 's, don't confuse 's Syndrome > with 's Disease, which is abnormal copper accumulation. > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > Share information about yourself, create your own public profile at > http://profiles.msn.com. > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 on 10/05/00 10:58 PM, Jerry at jerrycam@... wrote: > One of my earlier dr.s an endocrinologist, tried me first thing on Cytomel, > a very small dose (one 12.5 mcg tab/day). According to him, this dose would > supplement normal thyroid production of thyroid hormone, rather than > suppressing and replacing it as a larger dose would. The idea was that if I > did better on this protocol, then 's Syndrome would be indicated, and > therapeutic doses of TH would be tested. Hi Jerry, Although this endocrinologist was no doubt well-meaning with his 'bedside' thyroid hormone test, it is not surprising that you derived no benefit from the minute dose of 12.5 mcg of T3/day. Speaking from my own experience, and others with WS, often no difference is noted with doses of T3 as high as 90 mcg, twice per day. In my own case, I didn't notice an effect from the T3 (Cytomel=T3) until I was taking about 30 mcg, 2x/day. Real noticeable benefits didn't appear until a dose of 45 mcg, 2x/day. So even though the endocrinologist's test might be able to detect some cases of WS and mild hypothyroidism, it definitely errs on the side of caution. No response to 12.5 mcg of Cytomel by no means rules out WS, although it might have good predictive value for 'straight-forward' hypothyroidism. Hud Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 > Does anyone take T3 (or T4) for 's Syndrome (low body > temperature)? The American Throid Association, on their website, > pretty much debunks this syndrome and says that taking the hormone can > be dangerous. My body temperature is low, and I'm so confused! > > Jackie Jackie, I tried the 's protocol for T3 for a few months with the FM doctor I was seeing at the time. It did nothing for me but drive me crazy with the titrating up and weaning off. It had to be taken at exactly..the same time every morning and night. I had to set an alarm clock to be sure of the time. Most people with CFS/FM have low body tenperature. My temperature has been closer to normal and normal at times since on the Guaifenesin protocol. My thyroid testing is all within in normal range now. It used to be a little low or low side of normal. It seems to be straightening out. Yes, I have had every test that has ever been heard of for thyroid. Some CFS/FM people have good luck with Armour which is T3 and 4. I have heard that 's has worked for some people butI never knew any.I read the book and it all sounded like CFS/FM to me. Have you had thyroid testing? Some doctors don't think to do the thyroid anti-body group. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2000 Report Share Posted December 14, 2000 Jackie I tried the 's Syndrome protocol a few years ago but it didn't help me. I bought the book and doctor's guide. My temp is low; around 97.6 which I think is higher than it was back then. The hormone protocol brovides for you gradually increasing and decreasing the dose. Phil Jackie Naiditch wrote: > Does anyone take T3 (or T4) for 's Syndrome (low body > temperature)? The American Throid Association, on their website, > pretty much debunks this syndrome and says that taking the hormone can > be dangerous. My body temperature is low, and I'm so confused! > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2000 Report Share Posted December 16, 2000 Hi Jackie, My doctor and I both believe that 's protocol can and does work. But the minute you are stressed out the problem comes right back. So my doc put me on SR T3 as a permenant med. I was up dose of 60Mcg in the morning and 20mcg at night. I started doing other things to get healthy and have since lowered my dose. I then wanted to try Dr. Lowes protocol of cytomel, with only 1 dose in the morning. I have no trouble with it. I am now down to 1/2 of a 25 mcg cytomel tablet once a day and hope to get off of it completely soon. My temp stablized at 97.4. I used to be 96.2. Lori - > >Jackie Naiditch wrote: > >> Does anyone take T3 (or T4) for 's Syndrome (low body >> temperature)? The American Throid Association, on their website, >> pretty much debunks this syndrome and says that taking the hormone can >> be dangerous. My body temperature is low, and I'm so confused! >> >> Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2000 Report Share Posted December 17, 2000 Hi- I have taken Armour Thyroid for the last year or so - it has both T3 and T4. It's been great for my energy and my body temperature, which used to be around 96 and is now usually 98 every day. Jennie --- rogmarg@... wrote: > > > Does anyone take T3 (or T4) for 's Syndrome > (low body > > temperature)? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Has anyone heard of this, or have this. It's symptoms mimic Fibromyalgia, with a normally low body temperature. Quote Link to comment Share on other sites More sharing options...
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