** 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

[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.

[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.

[Emily_MHModerator]

Hi everyone -

Let's all please calm down, and discuss this without attacks, etc.  Name calling is never appropriate, and there is actually a great discussion here if you can get past the anger.  :)

Thanks!

Emily
Moderator

[patriciat]

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

Well, it IS a symptom listed for WTS.  So that WAS incorrect inormation.  Low body temp can apply to so many other conditions as well.  Technically, I as I pointed out before, WTS is considered hypometabolism.



Barb:   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.


This again was not correct.  Lots of testing is done by the WTS physicians, more than I got from ANY Endocrinologists in fact. So for you to state a doctor is Rx T3 based on WTS, you were not knowledgeable about it.  If you truly knew about WTS, the testing conducted, the protocol and dosing, you would not make that statement.

You made it a point to inject your links to info that differs from WTS.  Instead of accepting I had been treated this way successfully, you made it a point to discredit me and my doctor.  I was posting a personal success story and you could not leave it at that.

Further...you made NO comments when toots_jwu stated she had to "convince" her doctor to give her T3, to which he did.  So I ask, who was indeed more at risk of being negligent?  Any doctor that gives an Rx to patient that simply "asks" for it is a danger to me.  But again, you did not even find fault with that in your comments anywhere here.  Most unfair I would say.


I am fine when people disagree.  No problem with it at all.  But people went on the attack and no one here except for me alone knows everything there is about my situation and I have been treated for it with success, you cannot throw comments as was done at people when you have NOT experienced it for yourself.

WTS is the only protocol that uses T3 in the manner it does.  The dosing differs, so this is too key why T3 just given to a person may not work.  I was off T3 in a matter of days.  I took Armour which was pointed out...had T3 in it.  So why didn't work?  The T3 I was given, the dosage was successful, and the type of T3, whereas taking it in another form was not.  This is how WTS again differs.

My husband was on Synthroid for three years.  He never felt well.  Then he was placed on Armour.  He fared only a little better. After three years and several doctors and many increased dosages of these meds for him as well, he decided to see the doctor I went to that treated me.

He was on the WTS protocol for 2 weeks, then another cycle after that.  He sustained for the first time a body temp of 98.6.  While his temp had only dropped to a low of 96.8, this was the first time he was able to have a "clinically normal" body temperature.
I add..he is a licensed doctor.  He was a total skeptic due to his training.

Now, one can say this was coinicidental.  It could be, but we feel differently.  After three long years of Synthroid, Armour, Rx for BP, Cholesterol and bio-identicals for his low Testosterone, He is off ALL meds and doing well.  Coinicidence?  We think not. In 14 years of marriage, he saw me for the first time "sweat".  He knew there had to be a link to how my body temp was at 98.6 and then all of a sudden I am sweating like everyone else.
Not a coincidence!


I have been treated as a WTS patient.  So I can speak with accuracy and experience.

I am not surprised by anyone's symptoms in this particular forum.  This is a thyroid disorder forum, so those symptoms are common.

I hope when people post in the furture a success story, people will celebrate with them and realize there are other routes to take aside the conventional ones.  This was my intent from the beginning.  Too many people have been posting in this forum and I see repeatedly, how sick they remain even after the care that was rendered to them.
  
I too hope people will refrain from the attacks until they are fully informed of what they are posting.  This forum is here to help people.

[Barb135]

You said: "Barb:    Low body temp is a symptom of hypothyroidism (not Wilson's Syndrome).  

Well, it IS a symptom listed for WTS.  So that WAS incorrect inormation.  Low body temp can apply to so many other conditions as well.  Technically, I as I pointed out before, WTS is considered hypometabolism."

As I'm sure you are aware, both low body temp and "hypometabolism" are symptoms of hypothyroidism, and you said yourself that low body temp can apply to so many other conditions, as well.  I will stand corrected in that I should have said "Low body temp is a symptom of hypothyroidism (not ONLY Wilson's Syndrome)".  If you go look at the myriad symptoms for hypothyroidism, you will find, both low body temp and intolerance to cold, on the list.  Other than the omission of the word "ONLY", please explain how I'm incorrect.

You also said: "Barb:   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.

This again was not correct.  Lots of testing is done by the WTS physicians, more than I got from ANY Endocrinologists in fact. So for you to state a doctor is Rx T3 based on WTS, you were not knowledgeable about it.  If you truly knew about WTS, the testing conducted, the protocol and dosing, you would not make that statement."

You did not initially post any labs, or even indicate that you'd had labs; you simply stated that you had been dx'd with WTS based on your low body temp.  From that, I made my statement that any doctor who prescribes a T3 med, without verifying the need is irresponsible.  In addition, it's true that not everyone who is hypo needs a T3 medication.  Again, please tell me how my statements are wrong.  

I had no intention of discrediting either you or your doctor; as soon as I posted, you went on the defensive and began attacking.  I'm very happy that you have received treatment; I said that before.  

You are correct -- I most certainly did post links to articles disputing the validity of WTS; again, tell me how that's wrong.  If you are going to tout a treatment protocol, you also have to be prepared to encounter opposition without attacking or name calling.

Even your very last statement sounds combative: "I too hope people will refrain from the attacks until they are fully informed of what they are posting.  This forum is here to help people".  The fact that we have different opinions, by no means implies, or states, that we are uninformed and/or haven't done the same research that you have.

Emily (the real moderator) has kindly asked that we all get past the anger, in order to be able to continue the discussion.  

Again, I'm very happy that you got the treatment you were looking for.  I do hope you stay well.

All of that said, I will admit that many doctors, including endocrinologists, refuse to do proper testing, or to treat according to symptoms.  These are things we advocate on this forum -- finding a doctor who will do the proper testing, and treat symptoms as well as labs.  

I'm on a T3 med, because I was lucky enough to get an endo who recognized that some people actually need it.  Yes, he gave it to me at my request;however, he did not give it to me without verifying that I really wasn't converting T4 to T3, via the proper tests.

I'm curious about one thing -- in an earlier post, you said: "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."

Are you still on medication or were you considered "cured" when you hit 98.6?

Additionally, others have asked what labs you had done, but you've never answered - would you mind telling us what tests were done to reach the dx of WTS?  

[patriciat]

Barb:  Other than the omission of the word "ONLY", please explain how I'm incorrect.

reply:  That is where you were incorrect.




Barb:  You did not initially post any labs, or even indicate that you'd had labs; you simply stated that you had been dx'd with WTS based on your low body temp.  I made my statement that any doctor who prescribes a T3 med, without verifying the need is irresponsible.  In addition, it's true that not everyone who is hypo needs a T3 medication.  Again, please tell me how my statements are wrong.


reply: Why would you even imply any doctor would prescribe T3 related to WTS would not verify necessity?  Because I did not go into specifics on my labs, you ASSUMED that maybe someone was Rx me simply due to WTS.  I am out of town for another 13 days, I do not have access to any of my records.  As I stated before, I willl post info once I return.



Barb:  You did not initially post any labs, or even indicate that you'd had labs; you simply stated that you had been dx'd with WTS based on your low body temp.
  
** I do not see where I posted that I was diagnosed with WTS based on my body temp.

was specific to indicate body temp was one of the main symptoms.  Until labs are drawn and levels confirmed, a doctor determines if there is a true need for the T3 protocol.  As I also mentioned before, sub-normal body temp can apply to many disorders/illnesses.  






Barb:   You are correct -- I most certainly did post links to articles disputing the validity of WTS; again, tell me how that's wrong.  If you are going to tout a treatment protocol, you also have to be prepared to encounter opposition without attacking or name calling.



reply:   I had not problem with anyone that disagrees.  But to place that out there and find no fault in someone (toots_jwu) stating she had to "ask" her doctor for T3...and he GAVE it to her, yet myself who was evaluated, tested and then prescribed accordingly seems unfair.  You never commented on what her doctor did, nor did you question it. So yes, I felt that you had the fangs out to make me and/or my doctor seem not credible.

My personal opinion is that if a patient has to ASK their doctor for a prescription drug, then something is wrong in the assessment from that doctor.  Further, I feel that if any doctor gives a prescription for a drug just because they "asked" to do so...that is a red flag to me!

My doctor as well as the WTS related physicians start approx. 4x lower than conventional T3.  No one here knew that or they would have posted it.  Just like having a baby.  How can you know or comment fact anything about it really if you have not experienced it?  

Yo don't know and you cannot comment facts.





One person posted about Dr Wilson regarding the death of a 50 yr old woman as follows:

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




The info looked like it was copied/pasted from Wikipedia.  For some reason deliberate or not...they left out the most important piece of information.....the patient had not complied on the dosage, admitted to it and had been taking a dose HIGHER than Wilson prescribed.  So the patient was NOT taking high doses prescribed by Wilson


Wilson did NOT prescribe the dose the patient chose to take, so this was misleading.

I knew about this long before I saw the WTS doctor.  I took this article with me so I could discuss it with him at length.  He was able to explain the situation that confirmed Dr. Wilson was NOT responsible for anyone's death.  He was never charged for a crime. To this day, there has been no other doctors mentioned in this manner.  This was the only time.  How many doctors are out there practicing to this day that have been found negligent?  Plenty.   That is why there are so many malpractice lawsuits.

Now, I had no problem with that at all...if you are going to put stuff out there, then put ALL of it out there.  







Barb:   Are you still on medication or were you considered "cured" when you hit 98.6?


reply:  I can't say I am "cured" as I am only several months out from my treatment.  You are tested again to see where your levels are at.   The WTS protocol allowed me to take it for a short period of time and once you acquire a normal clinical temp, you stop. I covered this previously.  Had there been a need to go another course of the meds, I would have specified that.

You simply montior your temp from there and see if you are sustaining.  As of today, I am.  I will go back at one year for a ckup and labs, unless I become symptomatic before that tme.

As I mentioned to others, go to WTS site and educate your self if you are interested or want to educate yourself. If anyone went by my comments only then they will not be fully informed.  I have covered  most of my primary symptoms, confirmation of testing, evaluation and treatment.

I also tell people to go to libraries, online or wherever and research this.  Get the pros and cons.  My husband and I are healthcare professionals, so we were certain to look fully into this before proceeding.





Barb:   Additionally, others have asked what labs you had done, but you've never answered - would you mind telling us what tests were done to reach the dx of WTS?



reply:  When I reurn home in 13 days I willl post those.  I answered this before.  

I knew, especially in the manner I have been responded to previously, had I posted only the ones I could recall and the range, someone sure as the world would come back with their attacking rebuttle and it would have left me postng and re-posting.  RT3 was one as well as all of the other standard tests.  There was also serum, saliva, blood spot, urine, fecal done as well to rule out for example:  parasites, Candidiasis, Lyme's, Crohn's, AIDS, reproductive hormone levels, to name a few.  

[Barb135]

I'm not going to go through your entire post and answer every one of your statements, because I'm not going to argue with you.  It's clear that you feel you've been attacked when you were the one who attacked first.  It's also clear that you feel that I, and others on this forum know nothing, so I have no doubt you will argue with anything I say.

This is a thyroid forum and we have thyroid issues; some of us have been down very rocky roads to get the treatment we need, so it's certainly not appreciated when someone who has never posted here comes in and tells us we are "uninformed", based on a single protocol that's not even recognized as valid.  I can't tell for sure whether you consider yourself to have a thyroid issue or not; however, please understand that we are here to help those with thyroid issues.  Since this is a thyroid forum and WTS is not considered a valid condition, I have to wonder about your own agenda.

You've said repeatedly that you were given this treatment by an *MD*; however, many of us have had doctors who refused to test and/or treat properly, so just because an *MD* says something is so, doesn't mean it is.  

In regards to T3 medication -- it's very rare for anyone to start out on a high dose, as you stated.  I didn't comment on toots_jwu asking for T3 med and getting it, because that's not unusual; a lot of us have to ask for it........ I stated that *I* asked for it.  Many doctors refuse to treat with T3 med, others are very reluctant, still others don't even think of it.  

[patriciat]

I did not come here to argue.  I only wanted to tell MY STORY.  I did not see WTS mentioned anywhere as I have visited this forum many times as I too was looking for answers to why I was so ill.

I ONLY said that people here did not know about WTS as they have not gone through it's protocol according to the posts that were made.  So yes people are "uninformed" when it comes to WTS.  It was only that cause no one here stated they had been treated by someone under the WTS protocol.  

NEVER at any time did I state anyone here was "uninformed" or imply that re: thyroid disorders.  So let's be sure we are all on the same page with that.  Let's not spin this.

Everyone here is quite knowledgeable in that (thyroid) topic from what I have seen these last two years.

My ONLY point was people who had not gone the same route (WTS) as I had, could not comment factually or acccurately for the reason only.  

I again, was posting my success story in the hopes it helped another person.  This was not intended to be a bashing session.  But people coming at you with comments like "it is not this or this doctor was responsible for the death of a patient cause of what he prescribed"...I could not just sit back and ignore it.  Especially when the information is wrong.  

Just as any of you that posted your opposing opinions...I posted the facts in regards to my treatment, my knowledge of it as I had been treated via this protocol and finally my success.

I am fully aware of the people here and what they share on Thyroid Disorders as I have read many of your posts for two years.  After being out over six months from my treatment and too my husband's case, I finally felt I had something to share.  I only wanted anyone who was "interested" in looking at WTS to see my success with it.

I think I explained after 12 MD's in 8 years, aside from the other ones I saw could not help me.  So 21 MD''s in total were involved.  After still searching for someone to help me, I checked into something considered "unconventional" to so many.  This was a red flag to me and I certainly proceeded with caution.  I wrote to over 80 people to get information, research Dr Wilson and everything surrounding WTS.

I tell anyone if you are not getting well with the care someone is rendering to you, seek out another opinion.  Even Dr. Oz (who I really like), tells people if a doctor does not work for you, then get another opinion.  While most of my doctors were referrals from others, I kept searching.  So what worked for me may not for others...I also pointed this out.  Medicine is not a one size fits all and it is critical to find someone who will listen to a patient and get them on the road to health.

People seek out "unconventional" doctors and treatments all of the time.  Orthopedic doctors shunned Chiropractors long ago.  Acupuncturists were considered that too, Today, people swear by them.

Same for so many other "unconventional" ways of treating health problems.  It is really what works for the individual.  WTS worked for me as it had for thousands of people.  My husband who I mentioned is also a doctor, was on so many meds.  He saw the WTS doctor I was treated by and too had a favorable result.  So there is something to this and it worked for us.  He is off ALL meds and only takes a multi vitamin.  He was on several medications a year ago and now nothing.  He was like all of you who may not consider this a route for treatment.  He will not tell you that now.  He will tell you as I have, this does not work for everyone.  We can only share our stories.


Per Barb:
This is a thyroid forum and we have thyroid issues; some of us have been down very rocky roads to get the treatment we need, so it's certainly not appreciated when someone who has never posted here comes in and tells us we are "uninformed", based on a single protocol that's not even recognized as valid.  I can't tell for sure whether you consider yourself to have a thyroid issue or not; however, please understand that we are here to help those with thyroid issues.  Since this is a thyroid forum and WTS is not considered a valid condition, I have to wonder about your own agenda.


reply:  
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.

I told MY story, MY treatment, MY success.  I then responded to the posts directed at me accordingly.  

[Totie]

To: Patriciat

If you are doing something that make you feel better than by all means continue to do just that. You are the only one who will EVER feel what your body feels.

Now for me, I believe thyroid issues are way over anaylzed & just about everyone on here knows more than a medical professional does. Some people get to obsessed with the thyroid issue that they start to literally become consummed about the issue. In my opinion and MINE ONLY, when someone tells you what to tell your doctor to test for & that your results are in the lower range of normal, than they are to obsessed with it.

But like I said, this just me. I will comment on things I have gone through, but that is about it.  

[gimel]

Your post is puzzling to me.  On one hand you recognize the lack of thyroid knowledge among the medical community, which results in a multitude of symptomatic patients.  On the other hand you have concerns with members recommending certain tests and relating information about test results in the lower end of the range as being too obsessed with it.

How is using our personal experience, and the knowledge we have learned from participation on this Forum, plus the information we learn from thousands of hours of searching and reading on the net, to try and help members with their thyroid problems,  being too obsessed?  There is a great difference between being dedicated, as many here are, and being obsessed.  I think we need clarification of what you mean.

[jenniferk86]

I also want to back up gimel here, because the reason most of us become as you call it "obsessed" is because nobody will pay attention to us, if the health care professionals would listen to our symptoms instead of just numbers, we wouldn't have to become "obsessed" also when there are people who we care about in our lives going through health issues that are related, the tendency, if we cared about others, would be to research and become involved in our own health care and in the people we care abouts'  health care.  This is not obsession, it is necessary and very intelligent to do so.  Do you just sit back and let your doctor and everyone else just tell you what to do and what is fine? would you believe the dr. if he said I think there is nothing wrong with you, when your body is telling you something else?  Would you just sit back and let your life deteriorate and do nothing?  I don't think so, and if you do, then I don't know what to tell you.

[goolarra]

I have to agree with gimel and jenniferk86 that I don't quite understand how this constitutes "obsession".  Perhaps what you meant was that we were being presumptuous...that we had no right suggesting tests or interpreting results.  The medical community has demonstrated a serious lack of knowledge when dealing with thyroid issues (not confined to thyroid issues, in my opinion).  As gimel said, most of us have done lots of research, much of it in pursuit of our own thyroid health.  In the process, we have been exposed to more imformation on  thyroid (and much more patient input) than the average doctor's training provides.  

How would you suggest patients get their information?  

[Totie]

Like I said, my opinion. some become to obsessed....

[Barb135]

Everyone is entitled to an opinion.

We all know that the medical community often lacks in knowledge regarding thyroid issues (as well as others) and many of us have had to fight, long and hard, for proper treatment.  We also know that there are a lot of people who come to this forum, every day, looking for the exact help we give them, because they *don't* know what tests to ask for, where their results should fall in the ranges, what that ultra sound report means, etc. Many of them "assume" that the doctor knows best, and follow blindly (even I did that for a while, until I found this forum and started reading posts); this often keeps them sick for much longer than need be.  

The obsessed people on this forum helped me get well, and while I could have walked away to enjoy my life in peace and quiet, I chose to stick around and pay it forward, which why I sometimes, spend hours/day on here responding to posts and trying to help.  Judging from the number of PM's I get on a daily basis, I must doing 'some' good.

If my desire to help people, in turn, means that I am "obsessed" with thyroid issues, then yes, I guess I am.  It turns my stomach every time I read a post from someone who is desperately ill, and whose doctor refuses proper testing, medication, etc. or maybe doesn't even know what to test for or how to interpret labs.  I  will save my sympathy, knowledge and research abilities, and whatever other attributes I have, for those who appreciate them.

As I said in a post on this thread earlier today --- Just because a doctor said it or did it, doesn't mean it's right.

[Totie]

Okay, may be obsessed is the wrong word.

I should had worded it as "over anaylze".  

You guys say you research the web for ideas, answers, information, which is fine. At the same time you disregard someone's elses research on the issue because it does not match your view or what you have read.How can you believe one web site over another. How do you know whose word to believe? The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web.

[goolarra]

This thread may have too much going on in it already to launch on a discussion of the merits of TSH.  

How do I know whose word to believe?  I filter everything through my little brain and draw my own conclusions.  

"The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web."

No, not because we read it on the web, we are correct because we see how many people are misdiagnosed and mistreated based on it.  How many people have to be mistreated due to TSH-only testing before we are convinced?

In my one post above, I was actually trying to get an exchange of information going.  I find this subject interesting, and I would love some more information.  It has not been forthcoming.  If we can't exchange ideas and opinions without being viewed as "attacking", we really have no business existing (the forum, that is, not individuals).

[Barb135]

Yes, we are saying that our medical profession lacks training.  The time a typical pcp gets on thyroid training in med school is minimal.  Not even a lot of endos are good thyroid doctors. Any doctor that discounts obvious symptoms as "hypochondriac" or "non existent" is not a good doctor, whether it be regarding thyroid or other issues.  

I'm speaking only for myself, but I think gimel and goolarra will probably agree with me; I'm not right, simply because I read it on the web; I am right, because I see too many patients being treated, based solely on TSH, and they aren't getting well.  You have to admit there has to be a reason; and 9 times out of 10, that reason is because FT3 and FT4 are not being looked at, or if they "are" being looked at, they are being ignored or considered as "normal", no matter where they fall in the ranges........ what's normal for you isn't necessarily "normal" for me and vias versa.  gimel has some excellent data on the ranges and how they should be revamped, like the TSH range; which by the way, was changed over 8 yrs ago, but most labs and doctors ignored AACE..

As to disregarding someone elses research -- yes, I do that sometimes, if there is more evidence against a treatment protocol than there is for it.  Our goal is help people get well, and if I see a protocol that could be more detrimental than helpful for some people, yes, I will discount it.

As to over analyzing - I try not to do that, because a lot of newly diagnosed people, didn't know a single thing about thyroid issues until they got the call from their doctor saying they are hypo, or hyper; they don't understand what is happening to them, so in some cases, it's important to help them along the way, one step at a time.

In regards to "whose word to believe" - the patient is the only one who can make that determination.  I/we freely admit that we aren't doctors; we simply try to guide and support people based on our experience and research.  

[goolarra]

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.

[gimel]

.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.

[Rudye558]

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?

[Barb135]

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.  

[LazyMoose]

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!

[SassySharon]

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?  

[bridgeovertroubledwater]

I too have been dealing with Thyroid issues for quite a while and have just recently gone to see a doctor in the States, Bellevue Wa. about my Fibro and Fatigue.  I think my issues have gone past the Thyroid only problem and affected my cells.  This doctor in WA. is doing a Reverse T3 and I will be hearing from him next week about my blood work.  I too have been told by this doctor about Wilson's Syndrome and have been on Synthroid and Cytomel and had to stop this treatment cause it stopped working for me.  I was experiencing side effects from the Cytomel medication, such as chest pains and breathing difficulty.  When I stopped the medication, the side effects also subsided, however the problem was not resolved as I am currently taking simply Synthroid T4 meds at a higher dose and find that I am not good with that alone.  I anxious to know what the blood work will show that I had done at the Fibro and Fatigue Center.  I live in Victoria, B.C. Canada and travelled over to the States to find help as I could get nowhere with this medical profession here.  I had spent over a year and half trying to get help and like you they were constantly pushing the antidepressants and also saying that I was possibly bi-polar.  Seeing Dr. Vereen in Bellevue, he has shed a new light on this complex issue and I am currently taking energy injections to help rebuild the mitochondria cells that are causing me the muscle pain and fatigue.  Should Wilson's Syndrome be part of my problem, it will help to clear up a lot of my problems, I'm sure, but I'll have to wait till March 15, 2011.  I have an appt. with this doctor to go over the blood results and what the next step for me will be.  I'm glad I came across someone who also has been dealing with this strange problem.  The injections that I take also help with the liver as the liver is not able to convert the T4 into T3.  If you have anything that would be of help to me, I would love to know.  Thanks for sharing your experience.  I've come across a lot of negativity surrounding
this issue of reverse T3 and Wilson's Syndrome.  

[gimel]

It will be very interesting to see results of your new bloodwork next week.  In the interim, would you please post your latest test results and reference ranges for TSH, free T3, free T4, Vitamin D, B12, etc?

[patriciat]

I am sorry to hear of your health problems. I hope you can get the answers and treatment you need to have your health restored.

I am out of town visiting my sis and her husband who is very ill. We fear CA, so I am here to help drive them since we have to go to a large city for all of his medical appts as no one else can see him locally.  They live in a very rural area, so I am on dial-up Internet if that tells you how rural this place is!  Too, they being in their 70's, I can help around the house.  

**  First of all, I want to say that I am not advising or instructing you medically.   To do so especially since you are under the care of a doctor, some would consider practicing medicine.

However, I will be glad to share with you my story...

With that, I had been seeing doctors who were treating me for hypothyroidism.  I had extremely low cortisol levels and then came the peri-menopause problems as well.  I see we are about the same age, so I do not if you are dealing with those problems, but it has been the most horrible times of my life healthwise.  Since I have seen so many doctors, I will tell you of the last two and the treatments.

The doctor prior to the WTS MD, had me on bio-identicals, Cortef (low then high dose), Synthroid..then changed it to Armour.  After a few weeks of this, I was so sick and weak I could only walk a short distance and have to sit on the floor or the ground.  I felt like the next breath I took would be my last one.  My body temp had dropped to 95.5 and I was freezing.  Thank God I decided to stop this!  My husband who also was being treated for hypothyroid issues, was given in addition to bio-identicals and Armour..DHEA.  Three weeks later we were in the ER cause he thought he was having a heart attack.  The doctors there felt it was the DHEA causing the problem.

So we like you have been down a long road of hits and misses...more misses than anything else.  

Before I sought out the WTS MD, I made major lifestyle changes.  I stopped eating any food with nitrates or hormones.  Basically, I went organic.  I had a water filtration system installed at home to get the dissolved solids, flouride and chlorine out.  I switched my detergents to ones made from plants...no chemicals.  Had all of my metal fillings removed.  I sought our homeopathists, acupuncturists for help.  Had colonics and chelation for several weeks to also help reduce the toxins in my body and see if I could get some balance in my digestive system after so many meds previously.  While I did get some relief, I was not "well".  I was however better than when I was on the protocol the doctor I mentioned had place me on...it just had not worked for me.

I saw an MD that I was referred to by my Chiropractor.  His wife had seen him and this MD was supposed to be in Wellness care or as some would consider...alternative.  So all serum, urine, fecal and saliva (for the for time) tests were ordered.  The docs I had seen before did not find them (saliva) as accurate, so none were ever ordered.  

This particular doctor spent 1.5 hours with myself and my husband after labs came back. I was very low on several things such as Cortisol (am) (evening), Progesterone.  Thyroid was low, but since I am not home, I cannot provide those results.  Will be glad to provide them for you when I return.  I do recall Cortisol (am) was around 1.9.

It was there WTS was explained to me at length.  I came prepared as I had all of the articles written on Dr Wilson I could find.  I was fearful after the incident with Dr. Wilson in 1988, then too his license was revoked (for 6 months)

I was not going to let anyone ever again put me on meds and get to the point I was at with the previous doctors.  Too, I was so concerned about taking another Rx, I was going to make sure I absolutely knew what I was getting into.  Hormones are nothing to play around with.  


The main things that I "considered" with WTS:


2.  The dosage for Cytomel started at 7.5 mcg.  

3.  The Cytomel was compounded.  .

4.  The length of time to take Cytomel was not extensive.

5.  The fact my body temp (95.5/3.3 degrees below 98.6) was continuing to drop and no one before was concerned I was sub-normal or even able to perspire as I stated before.  

After 15+ yrs of being sick, this was something I thought was important.  I also had started having severe vertigo with Nystagmus and was progressively worsening.  I was hospitalized for that when I was being tested for the vertigo to rule out Meniere's, went into a vertigo episode and could not recover from it.  I was hospitalized immediately for three days. I was never given an origin of he vertigo, yet they ruled out Meniere's.

6.  The sudden weight gain and the inability to lose that weight. 70 lbs, as well as the typical symptoms found with hypothyroid and adrenal too.


Still, I was NOT on board with WTS.  I contacted the lab used for the T3 compounding.  My husband and I drove there to meet the staff and obtain further info.  We had many questions and wanted to get as much information as possible.  I had never been Rx Cytomel before and wanted to make sure I knew everything there is to know before another drug before it went into my body.


Still, I was NOT on board with WTS.  I started looking into various medical forums, libraries and writing to many people to get information from them. Finally, after 4-5 months from my initial visit and much research, I decided to go back to my doctor.

Since it had been so long since I had seen my last doctor, new labs were ordered to get my current levels and two weeks of taking temps and charting them.  I had a followup visit with my doctor to discuss things.  My levels had changed, so I was not getting better.  Now, my liver enzymes were elevated.  Too, I was having more edema than before in my extrmeities. No ability to perspire, severe insomnia and weakness.

It was then I decided to proceed with the WTS protocol.

I already gave my story and results.  As I will tell everyone, what worked for me most certainly may not work for you.  Your condition differs from mine greatly.  I am only several months out, but I think the lifestyle changes I made, espcially diet have helped more than anything.  I thought this was a good place to share my experience, sadly I was mistaken.  If it helped you, then I am happy.

I will be out of pocket for the next few weeks.  My husband is taking the laptop back with him when he leaves in a few hours, so I will not have a computer to use.  Pending what happens with my brother-in-law, I may be here longer that first expected.

You are in my prayers and I know God will help you.  Do not lose faith in Him.

[SassySharon]

I will being praying for your brother-in-law, sister and for you.  I am very sorry that you are having to go thru this.  I know you must be such a help to them at this time.  

It sounds like you were very cautious before you approached your treatment. And although you do not need anyone's approval, I commend you for that.  I think that is all the forum members are advocating here also. Everyone, including you, are concerned for the health of each other. That is the only reason why we post.  To extend experiences and brainstorm together the issues of the thyroid.  This is why we list as much information as we can, for others that may not have the same accesses (because of dial-up, being so slow, many quit trying to look) so they too can make some informed decisions.  You are posting the information that you have and some of us are posting information that we have obtained.  I know that you being in the health field understands that. That is why i would assume you did so much research.  Many  do not have the means or abilities to go to the labs and do the research like you did.

I do not remember are you still on the Cytomel?  If not, how long where you on it? In regards to your visit to the lab, Can you explain about T3 compounding?  I am interested in learning this.

Again, I hope the best for the health of your brother-in-law.        In  Faith,  -sass-

[katiebirdtweet]

Hi guys,
I'm not going to get into symantics, but would like to discuss some recent studies.  There's a lot th medical community is still learning about metabolism.  I'm a doctor admitting we don't know it all yet.  It turns out that fat cells secrete a ton of hormones and inflammatory markers.  I think that over the next ten years as we learn more about these hormones, we'll realize thar hypothyroidism is actual a grouping of diseases rather than one single disease.  

Literally, hypothyroidism could be as many a 100 different diseases.

After we discover each hormone, then we have to research where it comes from, what it binds to, what triggers it and how it relates to thyroid hormones.  Leptin, a recently discovered hormone of fat, has been found to be inversely proportional to the enzyme needed to convert T4 to T3 in tissue and proportional to it in the brain.  Some people are now being found to be leptin insenstive.  Some people have abnormalities of the receptor for leptin.  These are people we used to diagnose as hypothyroid, yet our understanding of leptin is still very young.  

Here are some of the hormones we've discovered in the last 5-10 years that relate to metabolism...

Adinopectin
Leptin
orexin
resistin
neuropeptide y
gherlin
cholecystekinin cck (more roles than we thought)
gut bacteria play more of a role than we knew (just started to figure that out in 2006)
resistin
il-6, tbf (secreted by fat cells)

recently discovered the brain centers for hunger:
in ventredial hypothalamus
orexigenix and anorexogenic centers

The first article mapping sleep centers as they affect hunger and metabolic hormones was published this year.

We're roughly ten years away from the answers.  Hold your criticism of each other and don't be too absolute.  Your all struggling with a frustrating problem that is poorly understood and may be different for each of you.  In fact, I recently presented a lecture to doctors who graduated from med school 2 years ago.  Most of them only knew about 2 of the hormones I mentioned.  I'm surprised anybody can rule in or out the possibility that a subset of hypothyroid patients may not convert T4 to T3 properly.  It looks like the rat and cat studies published this year suggest otherwise.

[Barb135]

That's an interesting post.  Do you have links to any of the studies being done, so we can look at them?  I've heard of several of the hormones you listed, though I'm not real "up" on any of them.. I do know that ghrelin is the "hunger" hormone and leptin is the one that tells us we're full, and I've heard that some people can be resistant to leptin.  

WE (on this forum) have been saying for ages, that some people don't convert T4 to T3 properly - I happen to be one of those and I had a heck of a time with the pcp who diagnosed me because HE insisted that Synthroid was all I needed for medication and that TSH was the ONLY test that needed to done in order to treat my hypothyroidism. He also told me that the only problem with my weight was that I "need to MOVE more", when I exercised daily and have a very physical job and never had a weight problem before.  

It's not us patients whom you have to convince about some of these things -- it's the doctors who treat us. Too many of them have the "Immaculate TSH belief", and nearly all of them believe that if labs are "in range", that's good enough, even though the patient still feels like cr@p.   Fortunately, *I* had an ENT who realized my pcp wasn't treating me properly, so he sent me to an endo, who not only tests TSH, FT3 and FT4 *every* time we do blood work, he's willing to prescribe T3 medication, along with the T4 (I'm on the new Tirosint) AND he's willing to listen to my symptoms and try to help alleviate them.  

There aren't enough doctors out there who are willing to treat symptoms; they want to treat labs.  

We very rarely completely rule out possibilities, but when there's science that contradicts something, as in the original subject of this thread .......  

If you have some links to these studies, it would be great to see them.  In addition, it would be nice to know where to find doctors willing to look into these things; most won't because insurance companies don't pay for things like that, or the doctor "assumes" that if the patient has a weight problem, it's the patient's own fault (i.e they eat too much or don't exercise enough).

[gimel]

Hi and welcome to the Thyroid Patients' Forum.  It was very refreshing to have someone from the medical community post something that is positive and informative.  This is opposed to the normal,  where we get criticized for not just accepting the "Immaculate TSH Belief" and "Reference Range Endocrinology" of many of our doctors,  and then we actually have the audacity to ask questions when we are still suffering with hypo symptoms.

You happened to post on one of the few threads where we spent time enthusiastically questioning each other about some strongly held beliefs.  We try not to let any unsupported statements go unquestioned, in order to try and provide the best info to our members.  We do a lot of research on our own to make sure of what we say.  And we welcome opposing views from medically trained people as long as they are willing to engage in a discussion and provide some references that support their statements.  Unfortunately, that doesn't happen.  No one yet has provided any statistically valid data that supports TSH as adequately correlated to either FT3, FT4, or symptoms.  Basically all we have heard is that what we suggest is wrong and the standard approach of using TSH and  Reference Ranges is correct, and that we should leave it all to the experts.  Unfortunately again, that standard approach (frequently unsuccessful), is basically why we are all here as members.

Thanks for the information about the research and discovery of those hormones.  I'd like to be optimistic and think that such research will be a medium term benefit for us and for future members.   On the other hand, over 8 years ago  the AACE recommended that the reference range for TSH should be revised, yet most labs and doctors have yet to adopt such a simple change as that, which is very hard for us to understand.  So I don't hold much hope for your research answers getting into main stream medicine  for a long time.  In the interim we will continue to do our best to give useful info to our members.  If you are able to spare the time and can give us any better suggestions short term, we would welcome having a discussion.  

[Lovingraw]

Pat I love everything you said. The problem is society is blinded by western medicine!! Like you said they prescribe meds for everything but NOBODY wants to fix the problem. There is no money in healthy people. Glad your well!! Your experience has encouraged me.

[helyanna]

Sorry, I have not read all this forum.
I have been on thyroid medication for over six years, fist on thyroxine, then Armour and now on Thyroid Erfa. I can say, that thyroid medication has not increased my body temperature. Sublingual temerature is about 36.3 in the morning. It may exceed 37 (max 37.2) for a short time in the afternoon. Thus, low temperature may be a personal trait.

I still have some weird symptoms now and then. But I don't know what is their cause. I am somewhat "poikilothermic", I may be cold when surrounding temperature is cold and I am hot when the temperature is hot. I think that no thyroid medication is working very well for me. If the medication is increased to high enough, then it also causes side effects. I never know whether the medication is on a proper level.

Many people here are treated with only T3, and it works. Reverse T3 has not been measured for me. Some years ago , when I did not know anything about rT3, I thought that there must be a counteracting factor to thyroxine (judged from my symptoms).

I have possibly been slightly hypothyroid for tens of years before the medication. Therefore the medication is helping so slowly. I had a severe burnout during my working years. I could have slight adrenal insufficiency, although my cortisol levels are normal. My TSH went to below 0.1 as early as I was on thyroxine. Then on Armour and Thyroid it has been 0.014 to 0.04.

The cause of my hypothyroidism is not known. There were some cysts in my thyroid gland, and later the gland has shrunk to very small (due to medication?). I have also hyerparathyroidism, posssibly  due to hyperplasia.

A T3-only medication interests me, But because T3 is short-acting and I am already 65 years and apt to atrial fibrillation, I do not dare to use it. My weird symptoms remain as a mystery. The cause for my atrial fibrillation peroiods is not known. And - dysautonomia has been diagnosed for me (on the base of fluctuating blood pressure, heart rate, temperature, eletrolytes, fluid, neurologic symptoms  etc). Yesterday hypochondria was suggested to me. I don't agree it at all.

Sorry, this post is disorderly. I wrote it very quickly.