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** THYROID PROBLEMS?? LOOK AT WILSON'S SYNDROME

I have been dealing with a body temp averaging 96.6, weight gain (over 70 lbs) and cannot lose it, severe insomnia, and inability to sweat and so on for over 15 years.  I am now 53 years old.

I have been to doc after doc and they all wanted to put me on anti-depressants...all of them because my thyroid testing comes back "in-range".  Is all testing a "one size fits all"?

Anyway, I have spent years trying to find out what is wrong with me when no one else could.  I located Dr David Wilson aka Wilson's Syndrome.  There are not many docs trained to understand this disorder, but it is REAL!

Let me tell you I was freezing all of the time, sleeping with blankets year round, going to a DRY HEAT sauna at over 140+ degrees for 30 minutes several times weekly...not one drop of sweat!  I would go outdoors and living in the south we have some warm summers.  My skin would be very hot, yet no sweat.  At the most, a slight clammy feel, but this was rare.  Your body must sweat to release toxins, but mainly to cool itself down when overheated.

At one point my body temperature was down to 95.5.  Over 3 degrees below normal!   Again, no doc anywhere thought the low temp or sweating was an issue.  Vertigo also became a huge factor too.  Lying down is usually when it hit me.  A positional vertigo.

My face would turn bright red when outdoors in the heat, yet no sweat.  When I cried, same thing...bright red!  The insomnia so severe I was sleeping only 2-4 hrs nightly.  Then sometimes no sleep for days.  I do not drink caffeine.  After a few years of this, I told my hubby I felt like I was not going to live much longer as I was so weak.  I took out life insurance at that point as well.  The insomnia is critical cause you must have sleep nightly so you can build your cortisol levels back up...cortisol is critical in a human.  You need deep REM sleep.

I was put on biodenticals, hydrocortisone, Synthroid, Armour over the years.  None of this worked.  There is a problem with converting T3.  Taking these for many people will not work, because many will try to to deal with the T4 part of thyroid problems only.  Again, they do not understand fully T3 or Wilson's Syndrome.

Other symptoms...low BP, low pulse and respiration. So tired by noon to 3pm I had to lay down.  I quit my job as a healthcare professional because I was so tired and weak.  After I ate anything, I felt very sick. Started having pain in my legs due to lymphatic fluid not being able to move...again from not being able to sweat

Well, a doctor that believes and was trained in Wilsons, gave me T3.  Within DAYS my temp was back up to 98.6, I was sleeping and more than anything...I was sweating!!!  I mean it was wonderful!  This changed my life!

Please look at this as the general medical community does not acknowledge Wilson's.  There was also testing done on horses for anhidrosis that could not sweat as well.  They were put on iodine and showed significant improvement.  

There is something to this and why doctors cannot comprehend this, I will never understand.  They only deem you depressed and want to give you pills so you go away and die quietly.  Sorry, I refuse to be anyone's guinea pig anymore!  Plus, how can a doc assess you as depressed in 3 minutes when they know NOTHING about you?  They cannot, so do not let them!  After over 12 docs in the last several years, I found an answer.

Again, look at the Wilson's Syndrome site and find a doctor that has been trained to treat this.  T3 is a hormone and you want to not play around with this at all.

God bless
Pat
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1611319 tn?1378618399
The discoverer of Wilson's Syndrome graduated in 1985 from University of South Florida medical school.

He then spent a year at University Hospital in Jacksonville, doing an internship in family practice. That is the limit of his formal training and is the minimum amount of education required to practice medicine in Florida.

Wilson then worked at two walk-in clinics before joining the Institute of Specialized Medicine weight-loss clinic in early 1988.

The institute ran advertisements in The Orlando Sentinel that claimed it could ''medically readjust your metabolism so that your body can burn off those calories without starvation or strenuous exercise.''

The treatment entailed giving patients doses of Cytomel, the medication given Lois Flurkey.

Here was the reasoning behind such treatment: The body's metabolism, such as the heart and breathing rate, is controlled by the thyroid system. To give the body energy, the thyroid releases a hormone called T4. This hormone is like raw petroleum. It flows into the blood, where the body converts it into T3, which is like high octane gasoline.

It is this T3 that powers the body's metabolism.

Cytomel is a synthetic version of T3. And like the real thing, it kicks the body's metabolism into action. Some weight-loss clinics once assumed that if they could speed up the body's metabolism, they could cause it to burn more calories.

Unfortunately, a dose large enough to get the body to burn added calories causes complications, such as heart palpitations and rapid breathing. This mimics a disease called hyperthyroidism, in which the thyroid produces too many hormones.

Some Central Florida doctors say that Wilson's patients from the weight clinic began coming into their offices with elevated heart rates and palpitations.

Lois Flurkey was an overweight 50-year-old woman who went to Wilson in 1988 at the Institute of Specialized Medicine weight loss clinic. He started her on a small dose of Cytomel -25 micrograms (a microgram is 1/1,000,000th of a gram).

In his court deposition, Wilson claimed that Flurkey kept increasing her dosage without his permission. But he kept increasing her prescription to match the levels she was taking.

Eventually, Flurkey was taking 225 micrograms a day. The Physician's Desk Reference, a book that lists drugs and their recommended dosages, says that an average dose of Cytomel would be between 25 and 75 micrograms a day

According to court documents, Flurkey complained to Wilson of pain in her chest and left arm in July 1988. In his deposition, he said that he recommended she get a cardiac examination and take less medicine. But he said that she refused a cardiac examination because of the cost. And he said that she pleaded with him to continue prescribing the Cytomel. And so he did.

He also had her sign a release acknowledging she knew there were dangers with the treatment.

Flurkey died of a heart attack in November 1988. Wilson says it is only a matter of opinion on whether the Cytomel contributed to her death.

''If there was a lack of judgment ... maybe you could say I weighed too heavily the pleadings of a patient who was getting benefit from the treatment,'' Wilson says. ''Maybe I cared too much about her feelings. Maybe it was foolish. Most doctors might say, ''Well, you're pleading with me. But for my own sake, and for the sake of my peers, you are on your own. Have a nice day.'

''You could do that. But how would I feel if I was in her position. If I was feeling better than I had in years'' and the doctor took away the medicine.

Two days after Flurkey died, the family called Wilson's office to ask him about the Cytomel. ''He dropped everything and came over to the house,'' says Ann Belanger. ''He came over waving the release forms she signed, stating she was aware she could die from treatment.



Mr. Wilson is on a radio talk show in Des Moines, Iowa, getting out the information. Wilson is on a lot of radio talk shows these days, promoting his book and his syndrome.

The usual format is for Wilson to explain Wilson's Syndrome to the disc jockey, and then the callers ask questions.

The disc jockey starts in with some questions: Can Wilson tell just by looking at someone if that person has Wilson's Syndrome? Yes, says Wilson. Sometimes when he is walking in a shopping mall he spots people suffering from the problem.

Are redheads prone to this affliction? Yes, says Wilson. He has noticed that people with light skin and freckles are more vulnerable.

Patty calls in and says she has suffered from memory loss and fatigue and the medicine the doctor is giving her doesn't help.

Wilson says Patty could use some of his thyroid medicine. ''Absolutely.''

Regina calls in. She is ''smiling through her tears.'' Everything Dr. Wilson says fits her symptoms perfectly.

And then the disc jockey asks: ''Another caller mentioned he was advised by doctors about heart problems and other things (osteoporosis) that could be aggravated by taking the thyroid medicine. What is that all about?''

And Wilson answers: ''Well, there's the one thing we should remember, I guess it sounds ... I could see how someone listening might think I'm, I'm rather, I mean I'm being a little antagonistic toward other doctors. But, I don't, it's not that. The thing is that it's just when it's considered exhaustive, like it's just not appropriate when doctors consider that what we have so far is exhaustive because it's far from exhaustive. It's a lot less of an exact science than we make it out to be. Anyway to answer your question about this heart and osteo business is, is that we have to remember that a doctor needs a good rationale for prescribing medicine and it's like just like when you walk around in a roomful of furniture in the middle of the night you want to turn on the lights to see where you're going and that's kind of what's been missing for this thyroid-type treatment. And, and there have been some studies that show if you take too much of the wrong kind of thyroid medicine for too long, there is a chance you can get thinning of the bones. But none of these tests take into consideration body temperature patterns. I feel that a person taking thyroid medicine and they're not taking into consideration their body temperature patterns, they're not taking it in a way it as a way it should be done optimally.''
(end of article)

{My search of Flordia's Department of Health  for Medical Licensed Doctors Finds Dr. Wilson's License to be "Null and Void", due to his own failure to produce his mandatory information. Not due to this death.}

I copied and pasted this from an article about and interviewing Dr E. Denis Wilson, founder of "WTC"...I did not copy the entire article as it was 14 pages long.  I copied what I felt was pertinent to this issue..If you are interested in reading the article in its entirety, I can post the link if you like.  As I make no statement here, I encourage you to make your own decisions.  I made no changes .


Pat, If you don't mind me asking , Because you have mentioned a couple of times that you are a licensed medical profession has made me curious,  what medical profession are you licensed in?  

Helpful - 0
798555 tn?1292787551
Nothing like a good discussion!

I would just like to THANK all the "thyroid obsessed" "armchair physicians" on this forum that shared some excellent thyroid information with me the last two years.

For ten years I was a sick, hypo, in pain, Hashimoto patient on only T4 meds, with TSH and frees on the hypo end of the 'ranges'. Now I'm feeling ............well,.... pretty dam good on dessicated (T4/T3) with Ft3 in the upper third. Coincidence? I think not. Many others here and on other forums have learned about this....and it was not from doctors, that's for sure.

One doc even said I had Fibro, since my thyroid med put me "in range" but I still felt like crap........not! One said no one ever needs T3 meds. Another said Armour or any dessicated med was just for old people that are "afraid to change" to modern thyroid meds.

Personally I like learning, improving health, and I don't like living with my head in the sand. That's just me. And its paid off.......big time.  Improved health was the result, from the help of people donating their time for a good cause, (on the internet of all places).......to help others increase their quality of life when thyroid disease has taken its toll.

In return to others, I hope to help them by sharing useful thyroid information that I've obtained here, from books, and my personal experience with years of Hashimoto. Its the least I can do as a human being. Is analyzing a bad thing? If it was, I dont think I'd get paid to do that in my everyday profession. Remember......for years people thought the earth was flat..........because others (the professionals) said so........until an over-analyst proved otherwise.

Wilson's and Reverse T3 are interesting subjects. Not much technical info from peoples experience posted here either.

If thinking out side the box makes some 'thyroidians' over-analyzing technical thyroid geeks (my self included), all the better. I like the facts, that's how we learn and get better. That's how mankind evolved into the modern world. I didn't come here for someone to hold my hand,  that wont make my thyroid better. But facts will.

For people that feel good on the lower end of the 'free' ranges and on only T4 meds, well that because that is all your body needs. Consider your self lucky! - You may have no idea what it was/is like for the rest of us whose bodies need more than than the standard hypothyroid treatment. If I felt fine from the get go on the standard treatment, I would not be here. And why would anyone else that that feel great from day one on the standard treatment question others that dont.

Just in case someone thinks I'm being a bossy loud mouth......... Well, sorry, hike up your skirt or turn the computer off........ LOL

Again, thanks to all that exchanged good positive, very informative thyroid facts the last two years. You know who you are.  

Peace and keep on analyzing!
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
The only pages I know of people "bickering back and forth" recently is this one, so I might suspect that you came looking for it.  If that's not the case, I'm sorry you happened on this one right away.......

You are right -- new diseases are found fairly often; however, Wilson's Temperature Syndrome is not new, by any means....... it's been around for many years and back in the 90's the doctor who "discovered" it, was stripped of his medical license, and numerous studies have been done to show there is no basis for the treatment protocol.

Maybe it would be in your best interest to start a new thread of your own, with your particular issues, so we can address them independently.  When you post your thread, it would be good to post current labs, with reference ranges (these vary lab to lab, so must come from your own report), along with whatever other information might be pertinent to your own situation.  
Helpful - 0
Avatar universal
What in the world?  I was off from work today, just too fatigued and achy. I have been sick since 1996. I just had a scan that indicated a dominant nodule in or behind my thyroid, and have an uptake scan scheduled next week. Anyway, I thought I had found a place where other people were sharing their experiences and supporting each other. Wow, was I ever mistaken. All I found was pages upon pages of people bickering back and forth about who is right or wrong! I do not believe I will be reviewing anymore data here. Just keep in mind that new diseases are found fairly often usually by a process of elimination and identifying symptoms unique to them. By the way can anyone recommend a place where other people were sharing their experiences and supporting each other?
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Avatar universal
.Anecdotal evidence from the web is only a part of my source material.  I constantly search for scientific studies that support what I say to any member.  I also find lots of supporting info from people who are in the medical profession.  I can readily provide you links to such info, but you might quickly find your self buried with all that I have bookmarked over the last few years.  

I seriously doubt that any of the people that you consider as obsessed, or that over analyze, are relying only on what they read on the web.   In fact we try to guard against that kind of info, unsupported by scientific facts, from getting into this Forum.  Just as we responded to patriciat on this thread, questioning whether WTS was a valid diagnosis, or not.  We don't do it to question anyone's veracity, or their experience.  We do it to make sure that the info and recommendations presented to our members are the best that we can do and that we are confident of its accuracy.  It would be a discredit to the Forum to do otherwise.  In fact I think it is one of the strengths of the Forum.

I'm very sorry that you have the misunderstanding about what is presented on this Forum.  I hope that you will take the time to delve more deeply into the many threads on the Forum.  I think if you do, you will realize that you were mistaken.

I did not disregard patriciat's information.  I questioned the assumptions behind it.  I am still reading the WTS site and other materials.  I won't stop until I am satisfied that I have resolved related questions in my own mind, and then I will post further.
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Avatar universal
patriciat:
"Why would I not consider myself having a "thyroid issue"?   I have no agenda.  I belong to NO association or have any afilliation linked to WTS.  I was treated with a drug used for thyroid disorders.  How can that not be thyroid related?  That is why I posted in this forum."

From what I've been able to infer, your thyroid gland is healthy, as is your husband's.  I say this because neither of you is on thyroid meds any more (correct?), so we have to assume that your thyroids are able to produce T3 and T4 in appropriate amounts.  Therefore, you do not have primary hypthyroidism.

Of course, there are other conditions that cause hypothyroid symptoms and can be treated with thyroid drugs that are not properly thyroid dysfunctions, e.g. secondary hypothroidism, which is actually a pituitary dysfunction (once again, the thyroid is healthy, but the resultant symptoms are hypothyroid).

Any dysfunction in conversion also fits into this group since conversion is not a thyroid function, but a metabolic function.  

Of course, none of these is mutually exclusive.

I think this is important on many levels, and I have some questions that I would very much like answered.  If you have been lurking (people who read, but don't contribute) on the forum for a number of years, I'm sure you have seen me recommending people research RT3 dominance when I think it's appropriate.  I am not convinced of its validity or invalidity, but I certainly would give it as much credence as a diagnosis of fibro or CFS, for example.

My question is if RT3 dominance ever occurs independently of hypothyroidism and hormone replacement, i.e. do people with perfectly healthy thyroids, not on thyroid meds, develop RT3 dominance, or is it, in effect, a "complication" of primary hypo or the meds used to treat it?

I agree with Emily, the moderator, that this has the potential to be a great discussion, so let's start exchanging some information.  I believe that she meant everyone when she suggested stopping the anger and the attacks.
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