At 10:48 AM 4/5/97 -0500, you wrote:
>Hello folks, This is my first posting to the list. I was dignosed with
Hashimoto's about a month ago and have been on synthroid for almost 3 weeks.
>5. Mysterious related syndromes I've never heard of before: Fibromyalgia
>-- I asked the chiro who's been treating me for a shoulder injury (and is a
>friend of mine) about this. He said, yep, you've got that. HELLO????
************
Dear Esther - Do not take your chiropractor's diagnosis seriously unless
he has followed the FMS (Fibromyalgia Syndrome Diagnosis Protocol) which I
will list below. If he has not done this, go back to him and ask him to do
it. If he won't, run from him as fast as you can and find a more
responsible and conscientous health professional:
"The diagnosis of fibromyalgia requires only two things, a complaint of
aching all over and the presence of at least 11 of the 18 diagnostic
tender points (see the FAQ). Many other symptoms go along with FMS but
do not make or break the diagnosis. If you haven't been evaluated by
someone who knows how to do a tender point exam, you need to be. A
doctor who does not know the tender point exam is unlikely to be able
to treat your FMS (if that is what you have) competantly. "
"There are no laboratory tests useful in making the diagnosis of FMS.
FMS is a syndrome, meaning it is defined by the presence of certain
signs and symptoms rather than by a certain disease process (which is
as yet still not well worked out). You have it if and only if you ache
all over and have at least 11 of 18 tender points (trigger points occur
in myofascial pain syndrome). It is not a diagnosis of exclusion. If
a patient has a typical history but doesn't meet the tender point
criterion and other possible disorders have been excluded, I will
usually make a diagnosis of "possible fibromyalgia" and give standard
treatment a try. Sometimes tender points will be there only on some
office visits but not others." - David A. Nye MD ([log in to unmask]) *
Midelfort Clinic, Eau Claire, WI
If and when you are diagnosed with FMS, contact me and I will provide you
with FMS webs sites, FAQ ( Frequently Asked Questions - with Answers) etc.
that get you started on finding help, information and support.
***************
>Wilson's syndrome. The picture may also include this. Why is Wilson's
>looked at askance, even more than these other conditions?
**************
Date: Sun, 6 Apr 1997 03:59:43 -0400 From: [log in to unmask]
"Possibly because Dr. E.Denis Wilson:a)did not do any "real research"
including, but not limited to double-blind placebo studies to prove his
theory, b) a patient of Dr. Wilson's died while on his protocol and he was
subsequently not allowed to practice medicine for a period of time (some
subs here obsessed with this tidbit will gladly forward you the article),
c) very
few doctors even know what Wilson's Syndrome is, confusing it with a copper
deficiency known as Wilson's Disease, d)many doctors do not know what tests
to run to determine if a patient has Wilson's Syndrome. Those are just a
few reasons that come to mind right now. There are few WS detractors here
that can probably come up with some real doozies, but since I have the T4/T3
conversion problem, I can't honestly tell you why any good physician would
have a hard time considering WS in the face of clinical evidence and the
correct diagnostic tests."
**************
Dear Esther - Since I am usually the one who provides information that
supporters or present users of Dr. E. Denis Wilson's protocol do not
provide when asked questions like yours, you can refer to be as the "WS
detractor" if you wish. However, since everything that I have said in the
past has never been refuted, it can never be truly "detraction" or to take
away. Dr. Wilson's practice and his theory speak and act for themselves.
To support what Ricci said above:
(1) Dr. E. Denis Wilson has never provided scientific evidence or data via
the double blind placebo study to prove his theory;
(2) A patient of Dr. Wilson's died under his thyroid protocol care. His
license is still suspended. The only report I have regarding this case is
from a newspaper report and a general report of other charges against him;
Moving away from Ricci's supportive opinion:
(3) It is my opinion that that there is no evidence that what Dr. E. Denis
Wilson
defines as "Wilson's Syndrome" actually exists. There indeed can be a
cortisol-induced T4 to T3 conversion problem--that is well documented. Every
time someone undergoes surgery, or some other extreme stressor,
glucocorticoids are produced and monodeiodination of T4 to T3 is inhibited.
But this problem can be identified by measuring the reverse T3 and 24-hr.
cortisol levels. (When T4 is not converted to T3, it's converted to reverse
T3.) So in someone with a conversion problem, reverse T3 levels would be
high (and if cortisol were the causative agent, cortisol levels would be
high).
This, in the strictest sense, would not be hypothyroidism, i.e. hypothyroidism
means your thyroid gland does not produce enough hormone. However, as
supporters of Dr. Wilson point out, the effect is the same as
hypothyroidism--not enough T3 for cellular processes to occur. Some of the
Dr. Wilson supporters call it "autogenic hypothyroidism" since the
cortisol also inhibits TSH output, which would then indeed limit somewhat
the output of thyroid hormone.
However, and this is my main contention--a stress-induced T4 to T3
conversion problem in this sense is very temporary. Even if the stress
persists, the conversion problem does not. The body readjusts so that
cortisol does not continue to inhibit conversion. Generally, the problem
lasts a week or so. Dr. E. Denis Wilson believes that the conversion
problem persists--i.e. that the body is somehow "stuck" in this
non-converting state. He has no research and has no evidence that this is
really happening.
It is an interesting claim and supporters of his theory say this is what
happens, using only personal testimonials as evidence, but this is higly
subjective and in my opinion, unreliable. And, as far as I know, he doesn't
measure reverse T3 in every patient before and after treatment, which would
seem to be the judicious thing to do if you were going to try to find
evidence for a hypothesized mechanism. If he did this, and record it, he'd
have some data upon which to base his ideas. Personally, and maybe
contrary to the beliefs of Dr. Wilson's supporters about how I view his
theory, I really do wish he would do the research and gather the data.
But, until he does or other doctors who use his protocol do, "cavet emptor."
(4) And finally on an even more basic point, . . . "Denis Wilson
'hypothesizes' that a 'normal' body temperature is necessary for body
processes to function correctly."
"From all our research--and it's extensive--we have never seen any evidence
of this. That's not to say it might not be true; just that there is no
scientific evidence to even suggest that this might be true."
"Low body temperature is a RESULT of hypometabolism, not a cause. Body heat
is generated BY body processes, not the other way around."
"Dr. Lowe used to measure body temperature along with everything else (see
below), partly because of Dr. Broda Barnes' writings. But we found
temperature to be unreliable as a tool for assessing fibromyalgia patients'
improvement. Some patients' temperatures did rise right along with their
thyroid hormone dose. But many patients completely recovered and their body
temperatures never changed."
"Dr. Sam Refetoff (the discoverer of thyroid hormone resistance) described
to Dr. Lowe in a personal communication his studies to determine whether
body temperature could be a reliable measure. Dr. Refetoff put patients in the
hospital to monitor them, and had them swallow tiny thermometers connected
to radio transmitters. The transmitters sent signals to a receiver that
recorded core temperatures continuously. Dr. Refetoff gave the patients
varying dosages of thyroid hormone and even got some patients to the point
of thyrotoxicosis (severe overstimulation from thyroid hormone). What he
found was that body temperature did not reliably correlate with the effects
of the thyroid hormone. In some patients, a higher temperature did come
right along with the higher dosage, but not in other patients, and not
reliably. Dr. Lowe found the same thing on a much more simplistic scale."
"Denis Wilson unfortunately has no data. He doesn't have to, to treat
patients. But if he wants to be accepted by the scientific community--not
the medical community--the SCIENTIFIC community, he's going to at least
have to present some clinical data (not necessarily blinded, just
clinical), some record of his patient's successes--OR, a hypothesis for
which there may be at least some scientific basis."
"What measures does Wilson use to know when a patient is 'well' or
'recovered'? Dr. Lowe's protocol is data-driven. When our patients get
well, they not only know it, but the data prove it. Scores on the Zung's
Depression Inventory, the Fibromylagia Impact Questionnare, pain
distribution diagrams, visual analog scales for symptom intensity,
algometer tender point scores (not just pushing with a finger)--all are
used in assessment of our patients. So there is objective, as well as
subjective, evidence."
"Only data will help a protocol be accepted. And as far as I've been able
to discern, the Wilson's people have no data. And I'd say, the
humanitarian thing for Wilson to do is to get some, . . ."
Jackie Yellin - Fibromyalgia Research Foundation
Esther, there a few other minor points, but I think that this should suffice.
I know of only two people who are on or have tried the Wilson Protocol and
I will give you their e-mail addresses for their side of the debate if you
wish. Also, America On Line, apparently has had and may still have, quite
a discussion and debate regarding Wilson's Protocol. Others on the thyroid
list will have to help you find this information.
Cavet Emptor - Robert
*********************************************************
Information provided is to be received as a suggestion and for information
purposes only. Please consult your doctor and qualified medical
resource(s) before acting upon what I have suggested. Any and all
information quoted from other sources is done with the intent to inform and
empower. There is no intent or purpose for financial gain upon my part.
Please do not hesitate to inform me of what you believe is false, illegal
or misleading in any of the information provided.
- Robert D. Cowing [log in to unmask] FAX 916-661-3705
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