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Old 02-07-2007, 06:53 PM   #1
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Wilson's Temperature Syndrome

My doc recently (this morning) diagnosed me, and is having me start in 2-3 days (when the pharmacy has the stuff) on the treatment regimen.

Has/does anyone else had/have this condition? Treating it? How's it going??
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Old 02-08-2007, 03:48 AM   #2
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I've KNOWN 27 people who had 'treatment' for this. It didn't work at all for 23 of them (because the 23 had actual hypo or hyperthyroidism). Wilson STATES that if the patient has even subclinical hypothyroidism (or hyperthyroidism) that his 'treatment' will not 'work'. That means you need to first have a FT4, FT3, TSH, anti TPO antibodies, TSI, TPOAB done to rule out ANY thyroid 'disease'.

Edited to add: The other four people had 'other' endocrine disorders and weren't helped either...two had ED's and faulty metabolisms, the other two had pernicious anemia (any anemia gives low basal temp and low ferritin/iron and mimics hypothyroiidsm in different ways).


Sorry, I've not seen it change any patients' lives (well, they got a nice little burst of energy from the T3 while they were in the 'upper dosages'...but once they stopped...that was that...and like I said, MOST of them actually had subclincal hypothyroidism...their doctors just couldn't interpret their FT's and didn't do antibody checks). Good luck.

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Old 02-08-2007, 09:41 PM   #3
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Thanks, Pam. I'm still hopeful, as: my bloodwork indicates no thyroid disease, and no pernicious anemia here, either. My ferritin (actually, transferrin saturation) was PITIFULLY low 3 years ago, but in the most recent year, all the tests have indicated that it has greatly improved and is now well within "normal".

What is ED?
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Old 02-08-2007, 11:53 PM   #4
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Old 02-09-2007, 04:40 AM   #5
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'within lab ranges' for ferritin doesn't mean 'normal' It MUST MUST MUST be a 70 or above to be 'good' unless you are a male.

What is your most recent FT4, FT3? Don't you already TAKE Armour?? I think you need to also keep in mind that many docs give Armour, and when they don't 'get it' that they MUST go by FT's not TSH (Armour drops TSH like a ROCK right away, with the tiniest dosage, not enough to raise your body temp.) they jump to other dx's. So, you need to know your FT4, FT3 and have it taken every eight weeks and increase in Armour till they are 'normal parameters for Armour'.

I've seen people with low ferritin/iron (several on THIS board come to mind) have to take prescription iron for several MONTHS before it came even within lab ranges...let alone the 70 or better it TAKES to raise temp and stop affecting the thyroid itself.

OH transferrin saturation is NOT ferritin...you don't have the correct tests there. You need a ferritin (called: ferritin) and iron testing.

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Old 02-09-2007, 08:23 PM   #6
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No, I don't take Armour. Never have. My most recent ferritin level was measured at 70. 3 years ago, instead of measuring ferritin, different doc measured transferrin saturation, was VERY low (I want to say 3!) so she prescribed iron pills. 2 years later, and lots of iron later, ferritin meausred at 70, and so far so good with that.

I will post my most recent thyroid test results as soon as I get another copy. In the move (August) I've misplace a bunch of files, including my medical stuff. I can't even give you a ball-park, but we've requested copies from the old lab, which should be here within the month.

Thanks for all your info, Pam and Ntombi, I really appreciate it!!!!
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Old 02-10-2007, 05:12 AM   #7
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You also might want to go to www.thyroid.about.com and join the forum. There are many knowledgeable people there (and several interviews with VERY famous doctors talking about Wilson).

I am on over 3 GRAINS of Armour and my temp is 96.5 at BEST. Ok? I don't have Wilson's. I have autoimmune disease and no matter how MUCH T3 I take, it's not going to 'regulate' my temperature. I am not anemic, but at one time, a group of us were just bouncing the 'low temp' thing around and researching and I recall that we found roughly 43 different 'reasons' for low body temp. ONE of them was hypothyroidism...HALF of them had to do with women of childbearing age because of endocrine fluctuations. NONE of them were having to do with Wilson's. Good luck!

Oh, and one thing a good friend of mine did was ask HER doctor (when he suggested Wilson's) to provide her with a list of patients he had done this with who were CURED by it. He couldn't provide it. All he could provide was testimony from patients whose temperature came up to about 97.5 and went back down after they finished their 'cycling treatment'. I research and advocate and I've not PERSONALLY found anyone helped by it (after treatment) and my endocrinologist hasn't either.

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Old 02-13-2007, 11:29 PM   #8
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My sister has Hashimoto's---recently diagnosed. D*mn those autoimmune diseases, I [COLOR="Red"]HATE [/COLOR]THEM!!!!!!!

Took my first treatment this morning---7.5 mcg of the liothironine, or however it's spelled. I feel GOOD about 2 hours after taking it! But it wears off. Now I took the night dose (same) and actually am starting to feel sleepy, after that good feeling.

I will ask if my doc has any patients who have pursued the Wilson's who might be willing to share with me their experiences. And thanks for the website, I'll check out that forum.
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Old 02-20-2007, 08:46 PM   #9
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I did the Wilson's protocol for many cycles. Yes, the T3 helps initially but it has a really short half-life, you probably won't feel "steady" on it at anytime.

Like I said - I did many cycles - never "captured my temperature." Found another MD who could tell by my labs I was hypothyroid. ((My TSH is/has always been normal so my ARNP refused to ever look into my "thyroid situation" any further.)) The new MD correctly recognized that my Free T3 and Free T4 were low - he prescribed Armour 2 grains daily ((this was his "conversion" since I had been taking the T3 routinely - you would never start a pt at this dose)). I feel MUCH better now.

Just my 2cents on the Wilson's Temperature Syndrome.....
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Old 02-21-2007, 12:31 AM   #10
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ONE of my docs told me I had that too.
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Old 08-23-2009, 10:09 AM   #11
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I'm on Wilsons Protocol

I've been on Wilson's since March and it is not the last of August. It has improved many of the symptoms I was having. It had gotten to a point where I just started gaining weight, had headaches often, generally fatigued, couldn't sleep, and more symptoms. My temp ran around 96.5 to 97. Low carb used to be my answer to weight problems, as I had successfully maintained my ideal weight for my small frame, 5'3" body of around 120-125. Then about 2 years ago,everything went haywire, I gained up to 157 pounds, 20 of that in one month, and going back to strict Atkins Phase 1 didn't work. Exercise made me gain weight.
The protocol has raised my body temperature to 98.6 and I don't have the fatigue, and the headaches are few and far between. I did have a period of "shakes" with it, but after reading the info again, they strongly suggest that you take the Cardiac PX supplement with it, which I found to be more effective than the test dose of Synthroid. The problem is that after I had captured my temp and then the 3 weeks at the lowest possible dosage (7.5) when I went off the medicine, I started gaining weight. I only lost down to 142 with it, and in the month I have been off, I gained up to 149. That's with 30 min to an hour on the treadmill at 3 to 3.5 mph. I e-mailed Wilson and they said go another round, which isn't a problem because I already had it. If that doesn't work, they suggested that I have a real thyroid problem, versus the thyroid symptoms that are brought on by low temp.
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Old 08-24-2009, 06:37 AM   #12
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is rt3 syndrome and wilsons the same thing? my doc says i have rt3 and wants me on all t3 for a period of time to clear out rt3. he knows i have hashimotos disease. also have a ferritin of 12.
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Old 08-24-2009, 12:50 PM   #13
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JustWondrin-

I'm no expert, but based on my own experience, I'd say you're hypo, and your weight problems are being caused by the low T3. I am hypo, and was medicated with T4 (Levoxyl) for a few years with no problems. But, as with most with Hashimoto's, I stopped converting, and my T3 tanked. In two weeks, I gained 10 lbs--even though I continued with the low carb WOE on which I had been LOSING weight slowly. I was also incredibly fatigued.

When my endo added T3 (Cytomel), I recovered almost instantly--from the fatigue, at least. Unfortunately, I had to lose those 10 lbs the hard way. They just don't melt off after getting T3--as I had hoped!

Personally, I agree with Pam that Wilson's is not useful. Doctors told me for 5 years that my blood work was "normal" and I had no thyroid issues. I now know it's because these guys were clueless. My first endo told me that she had many patients who were hypo with so-called 'normal' bloodwork.

Sure, the Wilson's protocol will temporarily halt your weight problems, but that's because you're getting the T3 you need. But you need it on a regular basis, not as a temporary solution.
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Old 08-24-2009, 01:20 PM   #14
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I thought Dr. Wilson made it VERY VERY clear that the battery of testing BEFORE trying (and I have to say, out of the 228 patients I knew personally who've undergone Wilson's 'um..protocol' turned out to ALL be hypothyroid, thus not ONE of them had lasting success..I have yet to find anyone who's undergone the 'um, protocol' who had any measure of lasting success, several of the 228 turned out to have autoimmune Hashimoto's..none were tested before using Wilsons...that would mean that when Dr.Hashimoto's named HIS disease he actually had found one, and Dr. Wilson named um..I don't know what...after his name. ?? Isn't this all confusing? There's a proven TEST for Hashimoto's, and Graves, and RT3 Syndrome, etc. but not any for Wilson's. Do the testing first please.

the battery of testing is as follows

FT4
FT3
TPO
TSI
RT3

If you didn't do that battery of tests first, then you're putting the cart before the horse.

Pam

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Old 09-07-2009, 03:07 AM   #15
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LOL, very confusing.
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Old 09-07-2009, 05:55 AM   #16
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Not confusing. Dr. Wilson listed a lot of hypothyroid symptoms of 'his' disease he'd named after himself. Then the world started 'changing'. We found out that 2 out of every ten women have TPO antibodies (Hashimoto's). So...if Hashimoto's is that prevelant, and pituitary driven thyroid disease is prevelant than there can't possibly be that many patients who have Wilson's, and they all need to be screened for Hashimoto's.

All of the patients who did this treatment that I know (IRL and on net) have gone on to do standard treatment (T4 and T3, or natural thyroid replacement) for their hypothyroidism.

Pam
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Old 01-01-2010, 06:31 PM   #17
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My pc testd my thyroid, not sure if it was jut the TSH or a full panel. It was normal, but I had most of the symptoms. So she had me try the medication they prescribe for it and told me that if I started having heart palpitations and my hair got really greasy to stop taking it right away because I didn't need it and it could hurt me. Well after a couple weeks that happend. So she said that ment I did not have a thyroid problem and it was probably just the weight. Then I went to a naturopath that diagnosed me with this based on my symptoms and an average body temp of 97.
I started taking lyrothyronine (spelling?) that I have to order from a pharmacy on the other side of the state. Only place I can get it. My insurance will not help with the naturopath or the med so I could not afford to continue the treatment though it helped greatly. I was then diagnosed with type 2 diabetes in July and cut out all sugar and starchy foods, and started doing the Atkins plan. I have lost 40 lbs so far,have great bg levels and feel really good for the most part. Most of my symptoms of the WTS are gone except for the hair loss. I also wonder if the weight would come off easier and if I would have more energy if I was back on the treatment.
Also wondering if I do have WTS will it show up on a Thyroid panel with the free t3, free4, and reverse t3 ?
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Old 01-02-2010, 08:47 AM   #18
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You should have the following done:

Free T4
Free T3
TPO AB (this shows Hashimoto's...ALL of the people I have known dx'd with 'Wilson's' have had this instead...we don't find many who've done the Wilson's protocol who get much better without replacement lifetime)

You can get Cytomel anywhere (any pharmacy) (you are giving the 'generic' name for it and that's why it made problems getting it for you). It's now available in generic. Notice Wilson's is a 'syndrome' and has no proof that it exists. Almost all women with low temp/low FT4/FT3 have just plain ol' hypothyroidism (with 98% having autoimmune Hashimoto's).

Pam
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Old 01-08-2010, 06:43 AM   #19
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Pam, I'd like to ask a question.....and I cannot answer the lab results question that you probably are going to ask, lol.....simply because I do not have a copy of the results and it's been awhile. My doctor put me on the Wilsons protocol back in the summer. I immediately felt better and after capturing my temps October, was weaned off. I have continued to feel wonderful since with the exception of early this week after traveling to Honduras for a week ...the stress of traveling brought on a drop in temp, so I am on the lowest dose of the T3 and it has come back up in 2 days. Headaches have stopped, hair has stopped falling out, I've never really had that much trouble losing weight if I really tried (I can lose well with low carb) and generally body aches are gone when my temp in optimized. Is this a temporary thing? Will I crash and burn and end up back in my doctors office starting over? I have been very happy to feel that I have at least for the time being found the answer, then after reading this board, feel concerned that this is not going to last. Can I ask what your credentials are? I don't mean to be rude, but I've been away from the boards for some time and have just come back on. I'd appreciate any info you can give. I'm also currently without insurance so running in for a battery of tests is not really something I need to try to do unless absolutely necessary at this point. Thanks!
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Old 01-08-2010, 06:54 AM   #20
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Check out the Thyroid Forum-Pam has listed her personal experience on many threads there. The sticky at the top is a good place to start.
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Old 01-08-2010, 06:56 AM   #21
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thanks!
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Old 05-24-2010, 06:35 PM   #22
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Starting Wilson's protocol

Quote:
Originally Posted by Just4Me View Post
My doc recently (this morning) diagnosed me, and is having me start in 2-3 days (when the pharmacy has the stuff) on the treatment regimen.

Has/does anyone else had/have this condition? Treating it? How's it going??

5/24/10
I've read quite a few of the messages here and they sure are old except for yours. I had a heart attack eight weeks before Katrina ran us out of New Orleans by destroying our house and most of our belongings. In addition that wretched medicine Lipitor like to ruined my life with the muscle weakness getting so bad I was convinced I had multiple sclerosis. When arbitrarily I quit the medication (yeah - I know - bad thing to do) the symptoms subsided to the point where I thought I was getting my life back. Then this low temperature cropped up several months ago and by accident I started taking my temp two or three times a day. For someone who's temperature has been 98.6 as the normal set point for over 60 years it was quite amazing. After a lot of research I brought the results to my primary physician.

I have perfectly marvelous doctor. She agreed to read the Doctor's Manual when I brought it to her. She had already told me that 96.7 to 97.9 was not a normal temperature for me. She has read the book and agreed to treat me with Wilson's protocol. I picked up the compounded medication today and have started the protocol - 6 a.m. and 6 p.m. ( I'm one of those who wakes up at 4:00 a.m. in the morning.) I'll be following the instructions very closely as the timing apparently is critical. I'm hoping to get my temperature back up to 98.6 as the most vital issue is the fact that enzymes do not function at all well if the body temperature is below 98.6 Since 1970 I've been stuck with the moniker of "the neighborhood vitamin freak" so I do have more than the usual knowledge about things like that. It is my considered opinion that this temperature syndrome was kicked off by the two very traumatic events in
2005.

Please keep in mind that anything I say here is anecdotal evidence. As I used to tell my students in New Orleans "I have something on the ends of my fingers that is unique. Nobody else in the world has anything like it. What is it?" Amazingly only about 40 percent of the students would get the answer - fingerprints. My next statement would always be: "What makes you think that the rest of me isn't just as unique?"

My Dad started me teaching piano in his studios in Honolulu, Hawaii when I was twelve years old. That was 1946. By that time I had already been playing the piano for nine years. In all of the more than 35 years that I did five shows a night, six nights a week as well as continuing to teach piano, I never found anyone who learned anything at the same rate as anyone else. Which is why education will never amount to anything in the schools until they start segregating students according to I.Q. There's no way a student with an I.Q. of 90 is going to learn anything at the same rate as a student with an I. Q. of 140. That's one of my private rants.

I hope the information that I can provide here can be of some use to someone. I think that your mental attitude towards trying something new has a great deal to do with your success. Who cares if you succeed because of a placebo effect? Regardless of how it came about it is still SUCCESS!

Fritz Owens
Professional pianist, composer, teacher, photographer and keyboard recording artist for over 40 years in New Orleans - until Katrina
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Old 09-02-2010, 10:50 PM   #23
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Wilson's Temperature Syndrome

In 1996 I was on thyroid medication when I went to Dr. Cathcart and he told me to stop the thyroid that I was taking and after 10 days start with the WTS protocol. It worked perfectly the first time and I didn't need to take thyroid for years after that. All of the information on the wtsmed site is free including the Doctor's Manual which can be downloaded free. I bought a copy rather than download 203 pages. Since the death of Dr. Cathcart there is now only one doctor in the area that uses the WTS protocol but she charges $525 for the first visit and $300 for all other visits so I will get a prescription from someone else and do it myself. A nurse practitioner in the Los Angeles area charges only $125 for the first visit. Dr. Cathcart also introduced me to EDTA Chelation for angina pectoris which sometimes takes 20 to 30 treatments but when I came in for the third treatment and told him that the pain was entirely gone he said, "You're responding so well you can come in whenever you feel like you need it."
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