<<Disclaimer: Verify this information before applying it to your situation.>>

Listmates:

I am a health professional and had not heard of Wilson's Syndrome, so
I checked out the site and information presented.  As the result of
my assessment I am concerned about the information being presented
and am sharing this with the List and not just the poster of the
message.  As above, we need to:  Verify this information before
applying it to your situation.


Some Red Flags at http://www.wilsonssyndrome.com

1. .com site indicates that it is not a nonprofit or educational site
(information needs to be evaluated with care)
2. the syndrome was identified and named by Dr. Wilson who is a
medical doctor who became interested in thyroid problems.  He has
apparently had no additional training in endocrinology.  He works
with a naturopathic physician, herbalist, and endocrinology
researcher.  He has apparently taught in the area of endocrinology at
the University of Bridgeport's College of Naturopathic Medicine.
There are no publications or evidence of research activities listed
for him.
3. products are for sale - herbal preparations and literature (this
is an indicator that the information presented may be biased toward
selling preparations and literature)
4. many symptoms of Wilson's Syndrome are listed--these symptoms are
also symptoms of other diseases (when multiple non-specific symptoms
are involved there may be another condition that will be missed by
focusing on the syndrome.  I found it interesting that a lot of the
symptoms are those of celiac disease.  HOW MANY UNDIAGNOSED CELIACS
ARE THERE IN THE WILSON'S SYNDROME PATIENTS?)
5. only success stories are listed (are there any "failures"--is the
treatment 100% successful and documented?  There are no scientific
studies or references listed.  There is a list of presentations, but
only one is recent.)
6.  herbal preparations--ThyroCare is the only one that I looked at.
The ingredients are listed as guggul gum resin, blue flag root, and
bladderwrack leaves.  In The Complete Guide to Herbal Medicines, by
Charles W. Fetrow and Juan R. Avilia (2000), there is a caution that
"blue flag is a know intestinal irritant and may pose a danger in
some conditions, medical experts don't recommend it for any disease.
In fact, they advise people to avoid this herb until they know more
about its risks and benefits."  The other two herbs are not listed in
this source.
7.  there is no readily available contact information.  An e-mail
address is listed under the Patient Area's heading, "To tell us of a
doctor."

Additional Information:

1.  The American Thyroid Association's Statement on "Wilson's
Syndrome," November 16, 1999, can be found at
http://www.thyroid.org/professionals/publications/statements/99_11_16_wilsons.html
The statement was developed in response to requests for information
from patients and physicians.  Note:  Dr. Wilson does describe early
concerns about the syndrome in the section, WTS History.  There was a
lawsuit and sanctions by the Board of Medicine (apparently Florida).
Dr. Wilson also cites an article published in the New England Journal
of Medicine in February 11, 1999, as evidence supporting his work.  I
did not read the original article, but I don't expect that his work
was referenced.  This article was published before the ATA's
statement was published. The conclusions of the study:  "In patients
with hypothyroidism, partial substitution of triiodothyronine for
thyroxine may improve mood and neuropsychological function;  this
finding suggests a specific effect of the triiodothyronine normally
secreted by the thyroid gland."  The study involved 33 patients and
the results suggested an effect, but additional studies will be
needed.

2.  "Naturopath Penalized for Unprofessional Conduct," by Stephen
Barrett, MD, is listed on http://google.com search for Wilson's
Syndrome.
http://www.quackwatch.org/04ConsumerEducation/News/wilson.html
This is about a naturopath licensed in the State of Washington who
treated 200 or more Wilson's Syndrome patients.  The information
presented reviews Wilson's Syndrome and the case against Dr.
Marschall.

This is an example of the need for constant evaluation of sources on
the Internet.  Please consider such information carefully and look
for evidence related to the information in a variety of sources.
ALWAYS remember to head the words at the top of each post,
<<Disclaimer: Verify this information before applying it to your
situation.>>

Betsy
Texas
--

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