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

[patriciat]

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

[Barb135]

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.  

[patriciat]

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.

[toots_jwu]

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.

[patriciat]

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.

[Barb135]

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

[patriciat]

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!!

[gimel]

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.

[jenniferk86]

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.

[Maikelbruce]

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

[goolarra]

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...

[jenniferk86]

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...

[jenniferk86]

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?

[patriciat]

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.

[Barb135]

The only shove I can give you, is to say that we usually consider fibromyalgia to be a set of unexplained symptoms that *often* turn out to be hypothyroidism.  

From personal experience, though, the symptoms of fibro actually can pertain to any number of issues.  In my daughter's case, she was originally dx'd with fibro, which was later changed to RA, then later still, was changed to lupus, which seems to be the final dx.  In my own case, though never actually dx'd with fibro, I had all the symptoms -- turned out to be hypo/Hashi and pernicious anemia, with low vitamin D, magnesium and selenium levels thrown in for good luck!!  

For some time (years), I was considered to be everything from hypochondriac to depressed, but no one ever thought to even test for thyroid function (or lack of).

[gimel]

Low body temperature is not confined to the set of thyroid conditions that some call WTS.  Patients with hypothyroidism also have low body temperatures.  Patients with low adrenal function also have erratically low body temperatures.  

There are no signs and symptoms that uniquely define WTS and thus qualify it as a Syndrome, by medical definition.  Unless, that is,  you want to say that excessive reverse T3 is what is unique about WTS.  And even that is just another form of hypothyroidism.  

When Dr. Wilson came up with the WTS idea, it was based on patients who were not being treated adequately with T3 meds, and their body temps continued to be low.  I'm sure he had no idea about the possibility of it being related to  reverse T3.  He did find a way to treat successfully, just as many doctors are doing today, not just those who call it WTS.  

Insummary, it seems the argument is about whether WTS really fits the definition I previously quoted, as follows.  ""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."   I don't think there are any features, signs, symptoms, or characteristics that occur, that would alert a physician to its existence and qualify as a syndrome, unless you say that excessive RT3 is what uniquely qualifies as Wilson's Syndrome.  And to that I'd have to say again that the original work of Dr. Wilson was based on body temperature and I seriously doubt that RT3 was ever part of what he called WTS.

When you think about it, I think the whole argument is strictly academic anyway.  Whether you want to call it WTS, or just hypothyroidism due to excessive RT3 doesn't really seem to matter.  Once diagnosed by symptoms (including body temp.)  and lab testing, the treatment protocol is similar.    So why are we spending so much energy here?  

[SassySharon]

Okay, being that the can of worms are already open: I having been following this thread from the beginning and felt that I had to research it for myself.  Because I am an advocate of a person's well being like everyone here is I felt I had to chime in because of info that I found on this debate.  In the interest of bringing forth more  data on this subject, I have copied and pasted this info from wikipedia and followed it up with research from the National Thyroid Associaton that also finds WTS not an acceptable "medical diagnosis". Please  know that until reading this thread and doing my own research, I had neither heard or had an opinion on it.

These findings were in conclusion of actions following the death of a 50 year old patient of Dr. Wilson taking high doses of medications prescribed by Dr. Wilson:


In 1992, the Florida Board of Medicine took disciplinary action against Wilson,[9] accusing him of "fleecing" patients with a "phony diagnosis".[3] The Board of Medicine and Wilson settled the disciplinary action by agreeing to a 6-month suspension of Wilson's medical license, after which Wilson would need to attend 100 hours of continuing medical education, submit to psychological testing, and pay a $10,000 fine to resume practice. Wilson also agreed not prescribe any thyroid medicine to anyone unless and until the Board of Medicine determined that the medical community has accepted “Wilson's Syndrome” and Wilson’s methods and modalities of treatment.[8][10]

Evaluations During disciplinary action against Wilson, members of the Florida Board of Medicine stated that there was no evidence [Wilson's] syndrome existed. They described Wilson's treatments as dangerous and a scam, stating that Wilson was fleecing insurance companies and patients with treatments for "a phony syndrome".[3][4] They described the treatments as dangerous.[3][4]

The American Thyroid Association (ATA), a professional association dedicated to promoting thyroid health, disavows Wilson's Syndrome. The ATA stated in 2005 that a "thorough review of the biomedical literature has found no scientific evidence supporting the existence of 'Wilson's Syndrome'." The statement added that the mean temperature of normal persons in the AM on waking is 97.5 °F, not 98.5 °F, and that many of the symptoms described by Wilson are nonspecific and typical of depression, anxiety, and psychological and social stress. It also notes that a similar set of symptoms occurs in the alternative diagnoses of neurasthenia, chronic fatigue, fibromyalgia, multiple chemical sensitivity, chronic Ebstein-Barr virus syndrome, and chronic candidiasis. Finally, the Association notes that chronic supplementation with triiodothyronine (T3) is particularly difficult and problematic, since various tissues set their own cellular levels of this hormone by making it individually from thyroxine, and supplementation of T3 may overwhelm this normal regulatory mechanism in some of these tissues.[2] The ATA statement was a primary reference for the Mayo Clinic website statement that Wilson's syndrome is not an accepted medical diagnosis, and warning patients against the diagnosis and associated unproven therapies.[1]

Current status :Although there is no evidence that the condition exists or that the proposed treatment is either safe or effective for it,[1] Wilson's temperature syndrome is somewhat popular in complementary and alternative medicine practices, and is being taught in naturopathic medical schools.[11]

I agree that there is a lot of energy being spent here, but I felt that if people are reading  and considering this, that they should know more information on the coined "WTS".

[patriciat]

you...
Low body temperature is not confined to the set of thyroid conditions that some call WTS.  Patients with hypothyroidism also have low body temperatures.  Patients with low adrenal function also have erratically low body temperatures.

reply...
Never did I say it was confined to a set of thyroid conditions.  Not at any time.


you...
When you think about it, I think the whole argument is strictly academic anyway.  Whether you want to call it WTS, or just hypothyroidism due to excessive RT3 doesn't really seem to matter.  Once diagnosed by symptoms (including body temp.)  and lab testing, the treatment protocol is similar.    So why are we spending so much energy here?


reply...

I never expected to have to defend myself as I have done the last 24 hours.  People implying I am calling WTS something I myself deemed/diagnosed, when repeatedly it was a licensed MD that gave my this diagnosis and the Rx to treat what HE diagnosed.

I am really amazed at the number of people that post in an attacking manner.  So I went on the defensive.  This was my life and my situation, who is anyone to criticize it?  Some people love being armchair physicians and ciritcize or put totally false information out there for people seeking answers to see.  I was not about that.  I only told about my situation, my treatment, my results.  Not anywhere or anytime did I say this protocol would work for anyone else.  I put this out there so people could look at this and see if maybe it is something they could pursue.

But I will add.  This doctor was the ONLY one that was concerned about my dropping temp as well as my other symptoms.  He was the only one that put me on the Cytomel when others did not and some of those MD's were Endocrinologists.  I was only put through agony taking Antivert, Synthroid, Armour and Hydrocrotisone and bio-identicals to which I thought I would not live much longer.  Instead of listening to me worsening, they only upped the dosage.  I being trusting allowed it and could only handle a few weeks of being a human giunea pig.  One doctor kept upping the bio-identicals to where I was bleeding for two months straight...she told me in front of my husband "she was not worried about that right now".  


WTS is filed with insurance carriers as hypometablism...ICD-9 783.9.  There are so many other illnesses/disorders that mimic those as hypothyroid that I honestly think for doctors it like finding a needle in a haystack.  Sadly, we become guinea pigs.

There is a series of things done before I ever saw my doctor.  Sleep amounts, basal temps for two weeks, daily wieght charting, saliva and serum testing, etc.  Nothing before with any of the 12 doctors even pursued from me.  They only pulled serum labs, prescribed (or not) from those solely.  Then if you are "in range", you considered a hypocondriac or depressed...which I am neither.  None considered sub-clinical at all as an option.

The sad part here is the people who go on the attack and just bash you.  This was information for people looking to resolve their condition as I did,  It was meant to help.  People coming from opposing side is fine, but they ignored my success so they could find me or my doctor not credible.

What I did, what I was diagnosed with, how I was treated are my personal results.  None of which deserved being attacked for...

So yes, a lot of energy spent unecessarily.

[patriciat]

Here we go again…

I was aware of all of this when I received my diagnosis from my doctor.  I researched this and brought the articles to his office.  He knew all about them and discussed it with me at length.

It was many weeks before I even let him prescribe for me because I was apprehensive.  I was at such a low physically; he explained how he felt this could work for me due to my lab results.  It did.  Will it work for others?  I do not know.  I wrote to over 83 people to seek additional information.  I am a licensed healthcare professional, so I wanted to be sure about my decisions.  Dealing with a hormone scared me. What I was prescribed was handled in a manner I personally was comfortable with.  The dose was prescribed in a very low dose of 7.5 mcg, way under the suggested dose (25 mcg) from the mfg as shown below.

**  For most cases of mild underactive thyroid (hypothyroidism), the recommended starting dose is Cytomel 25 mcg once daily. Your healthcare provider may increase your dose by up to 25 mcg every one to two weeks. Most people end up taking a Cytomel dosage of 25 to 75 mcg a day.  (King Pharmaceuticals)

From my understanding, this is the dosage all WTS patients are started out with, so the WTS treating docs do not just Rx Cytomel at some ungodly dosage as one would and has assumed here.

If Cytomel is being prescribed this day by doctors (at much higher doses I might add), then why is this such as issue?  Once you capture at 98.6, you stop the T3.  I did this in less than two weeks.  I was able to perspire after over 15 years of not being able to, so this was a miracle to me.  I was not freezing anymore or walking around with a blanket on me in the middle of summer.  Not a big deal? It is when you are living it.

We can all agree to disagree, but do not attack someone who has been treated and successfully at that.  You cannot be critical when you have not even gone down this route for treatment whatsoever.  I am fully aware that what worked for me may not work for everyone else, but that pretty much goes for any illness.  We are not one size fits all and people have to find out what works for them and only them..

So I would tell anyone to investigate and research carefully.  But legally doctors are still treating for WTS.  If there was a problem, the AMA and state boards would have stopped this long ago.  They have not to this day.

Any doctor today can and DOES prescribe Cytomel that have no association to the WTS theory, much higher doses because they will go by the good old insert from the manufacturer.  I chose the doctor I did cause of the Cytomel dosage he was starting me at was almost FOUR TIMES LESS the dosage any other doctor will start someone at.

So really, how was he incompetent or negligent?  I am well now.

[gimel]

I'm very sorry if you thought I attacked you in any way.  Never my intention.  I was only trying to present the facts.  The facts and the very definiton of syndrome refute that there is really something that warrants being called Wilson's Temperature Syndrome.  

I recognized that you were getting help from the doctor and that was great.  I'm convinced that if you had been lucky enough to find a good thyroid doctor long ago, you would never have been involved with your current doctor.  Even though based on your description of the doctor, I will give you that he could well be classified as a good thyroid doctor by my definition.  I do think however that he has a business motive for calling it Wilson's Syndrome.  It helps him distinguish himself and carve out a niche for himself such that patients will come to believe that they could not receive the same treatment elsewhere.  

My only purpose in posting on this Forum is to try and give people good info and help them find good thyroid doctors, or at least give them enough info to help them guide their own doctors in what they need in the way of diagnosis and treatment.  The other reason I post here is to try and make sure that members (newbies especially) are not given information that can be misleading to them and possibly cause them to go in the wrong direction.  I think if you go back and objectively look at your messages you will see there is a definite possibility of that happening here.  I hoped to defuse a situation that I think is largely due to miscommunication/misunderstanding, after which people get their dander up and no longer heard what is being said.  And that goes both ways I know.  

I hope we can all step back and take another look.  I think we all have the same basic objectives.  We won't always agree, which fosters good discussion.  But we can disagree without becoming disagreeable.  And that goes for all of us.  

[SassySharon]

If I made you feel attacted in anyway, I humbly offer my apologies. I  was only offering information that had not been mentioned. I also offer my sincere congratulations on the success of your treatment.  Afterall, it was what we all hope for others as well as for ourselves.   My only initiative was to present a bigger picture.   You stated in your response to me,
" I was aware of all of this when I received my diagnosis from my doctor.  I researched this and brought the articles to his office.  He knew all about them and discussed it with me at length."

I did not know of these things as you had not mentioned it in your initial posting.   I felt the need to mention it after I read it.

No, you should not feel that you should have to defend yourself. This is an open forum where we all can discuss options and opinions. We discuss fears and questions. And that is what I am doing.  I speak only for myself.  I never spoke critical of you at all.  

One of my concerns is that you said, "WTS is filed with insurance carriers as hypometablism...ICD-9 783.9...That leaves me with the impression that if it was filed as "WTS" that the insurance carrier would not be paying for it.  Which then leaves me with the further conclussion that it is not an approved "medical condition".
Now, I will be the first to agree that just because an insurance carrier does not pay for a test or treatment in no way reflects  good or bad.  I only feel that if it is being diagnosed as "WTS", then it should be being filed as "WTS".  

I wish you health and happiness and am happy for your continued relief.    -sass-

[patriciat]

While you brought up the info on the patient that died, for some reason you omitted very important info:


In 1988 a 50-year-old woman died of an arrhythmia and heart attack while taking excessive amounts of thyroid hormone prescribed by Wilson; around that time she confessed to not taking the medicine as regularly as prescribed.[8]

Why this tidbit of info was left out I did not understand. The woman died cause she admitted being non compliant.  She did not die because of what Wilson did. She died due to her own fault. There are no other deaths that I found linked to Wilson or anyone who treats for WTS. 

Further, no criminal action was taken against Dr Wilson. That should speak volumes in itself. 


On the ICD coding, I can only tell you how it is filed. It is a hypometablism disorder. I guess until the AMA decides to make changes, it will remain as is.  I was aware of all of this before I started any treatment  I simply added that so everyone could see I have researched this and knew from day one this was not an accepted condition (WTS)


I should have not needed to explain myself to any of you. No one here are doctors and when you have a person that is supposed to moderate, they attack you. Further, they attack you having no clue what they are speaking about this topic or even how a doctor prescribes in a WTS case.

People took bits and pieces of info and ran with it, confirming why if one is lacking knowledge about something, one should refrain from commenting until they have all the correct information. 

There is a lot of testing one goes through in regards to WTS. I was not about to put my life on the line with T3 since I had researched it for some time. 

You can look at this as many do about Chiropractors, Acupuncturists or Naturopaths. Some people think they are quacks, yet many are patients of these practitioners and swear by their treatments. 

Until the AMA or any state boards bans WTS and doctors are no longer allowed to continue care as they have been doing,  I will share my story with others

I appreciate your apologies. 

[gimel]

Please read again the definition of a 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."

So let's just examine this one point.  What signs, symptoms, or other characteristics would a doctor identify as being unique indicators that a patient has WTS?

[patriciat]

If you are truly interested, then go to Wilson's website and read for yourself.  There is tons of info there to draw your own conclusions.

I DID NOT NAME THIS A SYNDROME!  This was coined by Dr. Wilson himself.  If you want clarification as to why he coined it such, then contact him.  I cannot speak for him.  Why you continue to pursue this from me I cannot understand.  You act as if this is something I concocted.  I had nothing to do with the origin in the naming of WTS.

I do not need you or anyone else to tell me to READ.  I have researched this to my satiisfaction, proceeded with caution and obtained a successful result.


I sought a doctor who is considered a WTS physician, an MD.  He diagnosed me and placed me on the protocol for WTS accordingly.  12 doctors in a 8 year period, not to mention the additional 9 that misdiagnosed me with anything from lymphadenapthy to possible Lupus, all types of digestive disorders that only resulted in taking pills and not getting to the crux of the problem, PFO, MVP,  Oh and the classic...you must be depressed cause we cannot find anything wrong you!

Weight gain of 70 lbs in less than two years and not eating amounts or specific foods to justify that gain.  Severe insomnia, a body temp steadily dropping to over 3.3 degrees from normal, keeping a blanket on me at all times cause I was freezing, dry heat saunas at over 140 degrees and not producing one drop of sweat, migraines, etc.  Not any of them found this a big deal.  Most of them told me...maybe you just cannot sweat!  I was in sports when younger, so I knew that I could and the anhidrosis started when the body temp started dropping.  What a coincidence!!!

So after going through all of that and ending up in worse shape than before, I sought out another avenue being WTS.  For my symptoms, it made some sense to me and too when you have been through what I had before, you do whatever to avoid that again

.

One doctor I saw was a renowned Endocrinologist.  He placed me Synthroid and sent me on my way.  I could only tolerate it for a short period of time.  I was not getting any better and then I started experiencing edema of my extremities.  He only wrote me an rx for a diuretic, told me to find a PCP and he could not help me any further.

So, yes again I had a WTS physician that ordered testing never done before, provided lots of data on my symptoms, gave me his professsional opinion about my situation and low and behold...less than TWO weeks, I was at 98.6, able to perspire, no migraines and sleeping 7-8 hrs nightly.  So, my personal experience...there is something to this.

So really, who was the negligent one or quack here?  Not the one who treated me as a WTS patient cause he resolved in days what no one else could do in over 15 years!




We had a moderator placing data here that was incorrect.  

We also had someone who placed information implying Dr. Wilson was responsible for the death of a patient, yet they somehow forgot to copy and paste the fact the patient admitted to not taking the medication as prescribed, thus the patient's own neglect attributed to her death.  This is ciritical information!  It would be the same for a diabetic patient who is Rx a specific dosae of insulin.  Should that patient neglect to take it AS prescribed, then it too can result in death.




People here have been all too quick to jump the gun on my situation, comments and treatment.  No one here even knew anything about testing prior to treatment, the dosage one is placed on or the duration.  WTS physicians start patients at almost FOUR TIMES LESS the dosage the manufacturer recommends.  Too, WTS docs use a compounded T3...none of the armchair physicians here knew that either!  

Just because you don't understand or disagree with something is fine with me. I shared something in this forum for others to see in case it was something they would be interested in as no one was commenting on WTS.  There are thousands of people like myself who chose the same route as I did and had a favorable result.  This protocol is also being used internationally as well.  So really, if it is helping people, why argue this?

The AMA as well as all of the medical boards nationwide are allowing doctors to treat the WTS protocol, so they as knowledgeable and powerful as they are have not banned this, then I again feel comfortable speaking about my experience.  

We are now seeing patients treated under the WTS protocol for over 22 years and again, not one medical board or the AMA has taken any steps to ban this.  I feel certain they would if there was a problem.  They are all doctors, so I again affirm with their vast knowledge of medicine, they would have stopped this long ago.

[LazyMoose]

"WTS docs use a compounded T3...none of the armchair physicians here knew that either!"

- Seriously step back, calm down and look at what you wrote. Calling people here armchair physicians is out of place.

Many of us are aware of compounded T3, its also available in slow release that way. I have read Wilsons book also, two years ago. Personally I dont doubt its a posibility.  But many have had these symptoms go away on the correct thyroid med that worked for them - thats what others are trying to say.

No ones right, no ones wrong, so stop the name calling, accusing ect. You feel great, thats terrific news.



  

[Barb135]

I believe I might be the person you are calling a "moderator" who was "placing data here that was incorrect"  --- first off, I'm not a "moderator", secondly, I did not post anything incorrect, though you obviously didn't agree with me; furthermore, I have posted very little on this thread, yet you keep referring to things I said and how wrong I was.  

It's wonderful that you are feeling good; but that doesn't mean you can call us all names or make accusations just because we don't agree with you.  It's very unfortunate that you didn't get treatment that you needed as quickly as you should have, but that doesn't mean you completely are right or that we are completely wrong!!

It might surprise you that I had all of those symptoms at one time, as well; and that I'm currently on T3 med, along with my T4 med; all of my symptoms either went away or greatly diminished as soon as my thyroid levels came in line.  

It might also surprise you that we all go through a lot of tests prior to be being placed on medication, too; we've all done a lot of research to make sure we are getting the treatment we need.