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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
57 Responses
649848 tn?1534637300
COMMUNITY LEADER
Wilson's Syndrome does not apply to everyone who has low body temp, by any means; in fact, the medical community doesn't even recognize Wilson's Syndrome as valid, because it's not really a "syndrome", but mostly a treatment protocol, which again, does not apply to everyone who is hypo.

Low body temp is a symptom of hypothyroidism (not Wilson's Syndrome).  

T3 is most definitely a hormone and should never be used without verifying its need. Necessary tests to confirm the need for T3 med are TSH, FT3 and FT4........   Not everyone who is hypo needs a T3 med; therefore any doctor who prescribes T3 med, based on Wilson's Syndrome, without verifying it's necessity, is being irresponsible.  



Avatar universal
NOWHERE DID I SAY IT APPLIED TO EVERYONE, OR IMPLY THAT.  

Being a patient that has been treated for Wilson's Syndrome...successfully, I can tell you that low body temp is one the MAIN symptoms.  You are mistaken.  In fact, that is the main symptom that lead Dr. Wilson to research he T3 connection

Further, it is called Wilson's Temperature Syndrome, referring to the sub-normal body temperature that too many healthcare professionals ignore.

My post was offer others information that they would not normally get in conventional care cause of the medical community's lack of training, belief and/or knowledge of it.  However, there ARE MD's who do believe in this disorder and are treating patients successfuly.  I doubt they would put their license and reputation on the line if they did not feel strongly about this.  I was one of those patients that had success.  Will everyone that is hypo be treated as I was?  Of course, not.  I did not state that anywhere.

I shared my personal experience and my results.  What someone does with that is solely up to them.  I went through many doctors and suffered for many years.  I found something that worked for me.  I am am licensed in the healthcare profession.  Before anything went into my body, I researched it.  None of the traditional Rx's worked.

There is all types of testing done before a doctor places one on T3.  I did NOT imply otherwise, nor did I mention that everyone who was hypo needed T3.



ATA’s Position:
“The diagnostic criteria for "Wilson's syndrome"—nonspecific symptoms and body temperature measurement—are imprecise.”

Response:
It is true that most of the signs and symptoms used to diagnose Wilson’s Temperature Syndrome are non-specific, meaning that they can be associated with other medical conditions as well. Yet many of these same “imprecise,” “nonspecific” symptoms had been used by medical practitioners for more than 80 years to help establish a tentative diagnosis of low thyroid function. The list of symptoms used to diagnose hypothyroidism has remained remarkably consistent over the years (although more have been added). Most of the signs and symptoms of hypothyroidism listed by the American Thyroid Association are among those listed for Wilson’s Syndrome. The challenge for clinicians over the years has been that any single symptom, many symptoms, or even all of the symptoms of hypothyroidism actually may be absent in individuals who are hypothyroid. To solve the problem biologic tests have been developed, beginning early in the 20th century. Over the years, each new test has been hailed as the definitive test and vigorously promoted, only to ultimately be proven inadequate. Are the current tests the infallible indicators? The controversy continues.

Since 1891 there has been one “test” that has been the most practical and useful: a therapeutic trial of thyroid hormones. This is a technique that physicians commonly use to correctly diagnose a variety of medical conditions – try a treatment and see if it works. If a patient’s symptoms resolve or improve with thyroid hormone supplementation, hypothyroidism is the most likely diagnosis. Clinicians familiar with Wilson’s Syndrome use this procedure. If body temperature increases and symptoms resolve or improve with the application of the prescribed protocol, the most likely diagnosis for the patient is Wilson’s Syndrome.

Medical wisdom exhorts doctors to be ever mindful to treat the patient, not the test.


Avatar universal
Thank you for posting your experience.  I was ready to see someone specializing in Wilsons temperature syndrome when I just couldn't warm myself up, even on ERFA dessicated thyroid alone.  Then I convinced my doctor to give me some T3 (cytomel) and my body temp has gone up a bit, but I still experience some sweating and hopefully that will die down.  I was afraid of having such a low body temp all the time cause I read somewhere you can go into some sort of coma if the problem continued.
Avatar universal
Thanks for your reply

Please find someone who treats for WTS specifically. T3 cannot just be given, it must be specially compounded.  There is only a few nationwide that do this.  One in Alabama. You can place yourself at great risk if you go about this incorrectly

Read up on WTS. Then go from there. Not sure if it will help.

Too, one thing I did on my own was to stop eating and foods that were not organic. I did not realize the amount of hormones I ingesting. I think personally this is creating a lot of problems for people. My belief is I can no longer trust what is allowed in my food. Flouride in our water, growth hormones in our meats, pesticides on our produce. How can that be safe? I think it is why cancer is so prevalent.

Low body temp is serious. At a consistent temp in the mid 95 degree range, I felt I was not going to live much longer. I was very weak. The closer one gets to 90 degrees it can be as serious as one who runs an excessively high temp.  As mentioned before 12 doctors I had seen found no problem with my dropping temp. A temp deficiency of as little as .2 degrees off the range 98.6 can make one feel very ill.

Good luck to you and I hope you feel better soon.

649848 tn?1534637300
COMMUNITY LEADER
Below are 2 well respected websites pertaining to a diagnosis of Wilson's Temperature Syndrome.  The first if Mayo Clinic, the second is the American Thyroid Association.  

http://www.mayoclinic.com/health/wilsons-syndrome/AN01728

http://www.thyroid.org/professionals/publications/statements/99_11_16_wilsons.html

Avatar universal
Gee,

Thanks for sharing, but I have already read this information prior to my treatment.  My doctor too was aware of these.  With his education as an MD and what my testing results proved to him, my condition warranted the WTS protocol.  I only told my story cause I was not seeing that in the forum.  

My results were a success as it has been for many others.  As mentioned before, I never implied at any time this was for everyone, cause it is not.  I would not dream of putting false information out there.

I hope everyone will research fully as I did all pros and cons before they proceed with any treatments, meds or procedures.  People have to find the right doctor for them and the right treatment.  This they must be diligient about.

Have a blessed day!!
Avatar universal
Not sure why I have a compulsion to stick my nose into this whole thing, but maybe a fresh look at a couple of things might help.  I know that I always tend to get upset when someone is biased and can't accept my prejudiced point of view.  LOL

So the first thing I want to point out is the very definition of Syndrome.  

"In medicine and psychology, a syndrome is the association of several clinically recognizable features, signs (observed by a physician), symptoms  (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one or more features alerts the physician to the possible presence of the others."

Then I want to point out that there are certain signs and symptoms that have been identified as typical of Wilson's Syndrome, such as low body temperature, and low metabolism.  Unfortunately these very symptoms are also identified with ordinary everyday hypothyroidism as well.  These very symptoms can be the result of low FT3 and FT4, or low FT3 due to inadequate conversion of T4 to T3.   Successful treatment only requires recognition of inadequate meds in some cases, or the need for T3 meds in the case of inadequate conversion of T4, and medication adequate to relieve symptoms.  

The only other condition that is different from the above and that results in the same signs and symptoms would be the case where a patient's body converts excessive T4 to Reverse T3.  Since RT3 is biologically inactive, when it fill the receptor cells, it prevents adequate FT3 from getting to receptor cells and thus results in hypo symptoms as well.  This does not occur too frequently, and is largely overlooked by doctors.  But it is just another type of hypothyroidism, and shares the same signs and symptoms, including low body temperature and low metabolism, and it is normally treated by using only T3 meds.  

So where does that leave us with respect to Wilsom's Syndrome.  What set of signs and symptoms are uniquely identifiable as Wilson's Syndrome?  I suspect that there really aren't any.  From what I've read, Dr. Wilson originally used some of the early data from Dr. Broda Barnes, on body temperature,  and the fact that many thyroid patients were not being treated adequately to relieve symptoms, and probably enhanced his medical practice by promoting what he called Wilson's Temperature Syndrome.  Giving him some latitude, there may not even have been any recognition of the effect of RT3 at the time, so his approach to the problem may have been new for the time.  I don't know.

If the treatment that Pat is getting works for her, great.  There are few enough good thyroid doctors around that I would ever want to discourage anyone who is happy with treatment.  
My main point is that in my opinion, there are no signs and symptoms unique enough to be called a Syndrome.  If anyone wants to call it that, fine.  But to me a syndrome would have unique signs and symptoms and would require uniquely different treatment from that currently available from those few good thyroid doctors that we are able to find.  I don't understand anything here to fit those criteria.
1448748 tn?1312959808
Great way to explain.  You are spot on. I think that Barb is right, but you explained it in a way that doesn't discount Patriciat and maybe give Pat a new understanding, that right now she may be calling it Wilson's Syndrome and it may look like it fits all of the literature out there supporting the theory, but in all actuallity it is probably a deviation of some sort of thyroid problem, if the T3 therapy is working.  

Meaning, that even if the concept isn't right and she doesn't really have Wilson's syndrome because it is not a real syndrome, there is probably a very real problem with her if she keeps having persistent problems and the symptoms are not "all in her head" which would make anyone defensive if told that.  This give an explanation that is probably close to Wilson's Syndrome, but instead it is just another type of thyroid problem that is not well known.

PAT would you mind posting your lab results with Free t4 and Free T3 with reference ranges? we might have even more insight to offer you.
1 Comments
I have to say that I did have an encounter with RT3. My lab test numbers were normal but I still was feeling the hypo symptoms. So I stopped my Synthroid which is 225mcg for about 12 days and by the third day I started feeling incredibly amazing. By the 12 day my hypo symptoms came back and I got back on my 225mcg Synthroid and kept feeling great. I hope this helps Mike
Avatar universal
Well, since fools rush in where angels fear to tread, here I go!  LOL

There is a test for RT3 dominance (aka Wilson's Syndrome). so perhaps if we call it that, rather than a "syndrome", we can get past one obstacle.

patriciat, I'm surprised you make no mention of this test.  We all convert T4 to both T3 and RT3.  It's the RATIO of one to the other that's important in determining dominance or lack thereof.  Raw numbers are of little importance.

RT3 dominance causes hypo on the cellular level, even in the presence of adequate FT3 and FT4 levels.  As such, it is a metabolic dysfunction rather than a thyroid dysfunction.  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?

I have to say that I've long been on the fence about RT3 dominance.  On the one hand, it's not generally accepted in the medical community.  On the other,  I do suggest that people research it if the symptoms seem to fit and other more conventional avenues of treatment have led to dead ends.  

Here's what traditional medicine has to say about it:

"Wilson's syndrome...is not an accepted medical diagnosis...Unproven therapies for so-called Wilson's syndrome may leave you feeling sicker, while a treatable condition — such as fibromyalgia or depression — continues to take its toll."

So, RT3 dominance is not an acceptable diagnosis, but fibro, which I'm not convinced is a conditoion separate from hypo, is???  And how often is hypo simply dismissed as depression?

I don't know, neither of those approaches in the quote gives me that warm, fuzzy feeling...somebody give me a shove in one direction or the other...
1448748 tn?1312959808
Well..... Its hard to say since we have no labs to actually even look at.... What Pat is saying is normal, we may well think that we see the problem if we had labs to look at.... so PAT please post labs...
1448748 tn?1312959808
We need lab results how do we know that what pat says is normal isn't borderline or normal from what one dr. said. But low enough to cause symptoms like a lot of us experience?
Avatar universal
One thing that I had to make my correction on re: Barb was her comment as follows:

Low body temp is a symptom of hypothyroidism (not Wilson's Syndrome).

This is where she was WRONG.  As mentioned previously, Wilson's MAIN symptom that was consistant in his findings was..sub-normal body temp.

This is why he coined it:  Wilson's TEMPERATURE Syndrome.



I am away from home for another 13 days.  After I return home, I have no problem posting labs.  

to goolarra..I only posted my experience and treatment.  I was tested for everything from AIDS to Lyme's.  Didn't know lab results were a requirement in this forum.  

I did not go into labs cause again, I only posted my symptoms, my treatment.  Others are searching for answers and no one speaks of WTS.

What I experienced was between me and a doctor who treated me for what HE diagnosed.  I responded well and sustained a body temp of 98.6 only after a short time of being on T3.  So for me this was incredible.  I went the conventional route for many years and worsened as time went on.  So again, for me I am glad I looked into finding an MD that was able to help me.

to add...
maybe give Pat a new understanding, that right now she may be calling it Wilson's Syndrome and it may look like it fits all of the literature out there supporting the theory, but in all actuallity it is probably a deviation of some sort of thyroid problem, if the T3 therapy is working.


my reply...
I am NOT CALLING IT anything other than what it is!  A licensed MD diagnosed me with Wilson's Temperature Syndrome aka WTS.  This is not something I dreamed up, it was an actual diagnosis, by an actual MD.  There are many MD's nationwide that are treating patients for WTS.

So if there is disbelief, great.  I was once one of those people.  This is what worked for me and others as well.  I wrote to many people before I ever pursued seeing someone for WTS who were also treated successfully.  Had this not worked, I would have continued my pursuit in finding a doctor to help resolve my health problems.  That is what everyone should do.  Keep searching until they can find a doctor and/or treatment that helps them too.


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649848 tn?1534637300
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