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.
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.
If you wish to contribute to this response to the ATA, or to offer comments,
please e-mail your suggestions and input to
ATAresponse@gmail.com
ATA’s Position
“T3 therapy results
in wide fluctuations in T3 concentrations in blood
and body tissues. This produces symptoms and
cardiovascular complications in some patients, and
is potentially dangerous.”
Response:
"Wilson’s Syndrome protocol (WT3) specifies the use of
timed-release
T3 in specified doses, which exercises significant
control over the introduction of the hormone.
Readers might wonder whether the ATA can cite
research indicating that timed-released T3 causes
wide fluctuations in blood and body tissues, with
the dangerous consequences mentioned. Our search of
the medical literature has not revealed any such
information.
Wilson’s Syndrome treatment protocol does explicitly recognize that some patients, especially those with a history of certain heart conditions, can develop elevated heart rates, worsened palpitations, or other types of arrhythmia. Most at risk for these complications are patients with cardiovascular conditions. Yet theexact same risks apply to the established treatments
for hypothyroidism utilizing T4. Dr. Wilson,
in his protocol, recommends an EKG prior to the
initiation of treatment and close monitoring by the
patient’s doctor during treatment. The protocol
provides specific instructions for monitoring signs
of cardiovascular complications, and a therapeutic
response in case they arise (just as in the
hypothyroidism). The WT3 treatment for Wilson’s
Syndrome is considered safe and is nearly always
well tolerated.
Wilson’s Syndrome treatment protocol does explicitly recognize that some patients, especially those with a history of certain heart conditions, can develop elevated heart rates, worsened palpitations, or other types of arrhythmia. Most at risk for these complications are patients with cardiovascular conditions. Yet the
If you wish to contribute to this response to the ATA, or to offer comments,
please e-mail your suggestions and input to
ATAresponse@gmail.com
ATA’s Position:
“The proposed basis for [Wilson’s Syndrome] is inconsistent
with well-known and widely-accepted facts about
thyroid hormone production, metabolism, and action.
T3 is one of the two natural thyroid hormones.
Normally, it is mainly produced in target tissues
outside of the thyroid gland from metabolism of
thyroxine (T4). This production of T3 from T4 occurs
in a highly regulated manner. This is one reason
that T3 is not currently recommended for thyroid
hormone treatment in most patients with thyroid
hormone deficiency. T4 therapy allows T3 to be
produced, as it is naturally, by the regulated
metabolism of the administered T4 medication to T3.”
Response:
The American Thyroid Association questions the
validity of Wilson’s Syndrome due to its supposed
“inconsistency” with “widely-accepted facts.” However, a feature of responsible, inquisitive medicine
is its willingness reappraisal and re-assessment
of accepted “facts” and theories when new data come
to light as a result of new research, new
technologies, or the identification of new diseases
and syndromes. An accepted fact of today may be
tomorrow’s disproven misconception.
For example:
Not long ago the medical community was certain that ulcers were caused by excess stomach acid created by stress and/or spicy foods. We now know that ulcers are often caused by a bacterial infection not primarily by stress or stomach acid.
The “TSH” test is currently the most common and well-established medical screening test for hypothyroidism. Ten years ago, if a patient had symptoms of hypothyroidism but the TSH test yielded a reading of 4.0 – which was considered at the time to be within the normal range for thyroid functioning -- the patient may have been told that s/he did not have hypothyroidism and would very likely not have received treatment, despite having clear symptoms. In 2002 the “normal” TSH range was reevaluated and narrowed. Today the same patient with the same symptoms and TSH test results would be much more likely to be diagnosed with hypothyroidism. In medicine and in science generally, “facts” are creatures of their informational environment; they are consistent with the belief systems of their time. The problem arises when practitioners are resistant to new information primarily because it is “inconsistent” with “widely accepted” beliefs.
When patients who have displayed symptoms consistent with Wilson’s Syndrome find relief of those symptoms through treatment with timed-release T3, using a very specific protocol and/or specific herbs, it is highly likely that the symptoms were caused by a problem in the thyroid system. This conclusion is strengthened by the fact that the reported rate of successful treatment (generally above 80 percent) is significantly higher than those achieved typically with a placebo. In short, it is highly likely that Wilson’s Syndrome symptoms were the result of thyroid system disregulation and the treatment with T3 was the agent of that improvement, even if we are not certain (as of yet) why the treatment works. In the words of one researcher and clinician, "We cannot afford to dispense with any treatment that works, even if we are not certain how it does.”
For example:
Not long ago the medical community was certain that ulcers were caused by excess stomach acid created by stress and/or spicy foods. We now know that ulcers are often caused by a bacterial infection not primarily by stress or stomach acid.
The “TSH” test is currently the most common and well-established medical screening test for hypothyroidism. Ten years ago, if a patient had symptoms of hypothyroidism but the TSH test yielded a reading of 4.0 – which was considered at the time to be within the normal range for thyroid functioning -- the patient may have been told that s/he did not have hypothyroidism and would very likely not have received treatment, despite having clear symptoms. In 2002 the “normal” TSH range was reevaluated and narrowed. Today the same patient with the same symptoms and TSH test results would be much more likely to be diagnosed with hypothyroidism. In medicine and in science generally, “facts” are creatures of their informational environment; they are consistent with the belief systems of their time. The problem arises when practitioners are resistant to new information primarily because it is “inconsistent” with “widely accepted” beliefs.
When patients who have displayed symptoms consistent with Wilson’s Syndrome find relief of those symptoms through treatment with timed-release T3, using a very specific protocol and/or specific herbs, it is highly likely that the symptoms were caused by a problem in the thyroid system. This conclusion is strengthened by the fact that the reported rate of successful treatment (generally above 80 percent) is significantly higher than those achieved typically with a placebo. In short, it is highly likely that Wilson’s Syndrome symptoms were the result of thyroid system disregulation and the treatment with T3 was the agent of that improvement, even if we are not certain (as of yet) why the treatment works. In the words of one researcher and clinician, "We cannot afford to dispense with any treatment that works, even if we are not certain how it does.”
If you wish to contribute to this response to the ATA, or to offer comments,
please e-mail your suggestions and input to
ATAresponse@gmail.com
ATA’s Position:
“There is no scientific evidence that T3 therapy is
better than a placebo would be for management of
nonspecific symptoms, such as those that have been
described as part of ‘Wilson's syndrome,’ in
individuals with normal thyroid hormone
concentrations.”
Response:
The statement “there is no scientific evidence” could be taken to mean
that research has been performed that does not
support T3 efficacy over a placebo effect. It may
also mean no research has been undertaken to
address this question.
The ATA position is ambiguous and misleading. In
fact, there have been no scientific studies of
Wilson’s Syndrome and its treatment to date.
Similarly, for more than 80 years there were no
scientific studies confirming the effectiveness of
T4 supplementation for the treatment of
hypothyroidism, despite the fact that T4 had become
the second most-widely prescribed drug in the United
States by the 1990s. Finally, in 2002, Synthroid --
the most popular form of T4 -- was evaluated and
given FDA approval. The ATA’s position implies that
Synthroid, too, could have been no more effective
than placebos prior to its federal approval, despite
the fact that it was widely prescribed and medically
accepted.
The ATA position also contends in its third challenge that the patient testimonials on Dr. Wilson’s website constitute “the sole clinical evidence supporting the efficacy Wilson’s treatment protocol (WT3).” The patient testimonials are not intended to imply scientific evidence to the medical community. Every physician is familiar with the placebo effect and how it can confound outcome results. Evidence confirming the efficacy of the WT3 protocol and the use of specific herb supplements comes from the reports of doctors who have extensive clinical experience diagnosing and successfully treating Wilson’s Syndrome. They report success rates typically above 80 percent. A sampling of those reports can be found on the website (http://wilsonstemperaturesyndrome.com/eManual/Comments/).
It is Dr. Wilson’s personal experience treating more than 5,000 patients, combined with the personal reports from other doctors that provide confidence in the validity of the condition and its treatment. This type of confirmation, of course, constitutes anecdotal clinical evidence. There is a clear need for published studies to evaluate clinical experience. However, as the medical research community is well aware, funding for outcome studies of non-patentable treatments is sparse.
Physicians, including endocrinologists, who treat Wilson’s Syndrome using the T3 protocol and/or herbal supplements, welcome any ATA efforts to pursue properly designed clinical trials to validate the suspected link between thyroid system deficiency and the constellation of chronic symptoms that diminish the quality of the lives of the potentially millions of America who suffer from this condition.
It is our hope that this point-and-counterpoint exchange will be the beginning of a constructive dialogue between the Wilson’s Syndrome community and the American Thyroid Association.
The ATA position also contends in its third challenge that the patient testimonials on Dr. Wilson’s website constitute “the sole clinical evidence supporting the efficacy Wilson’s treatment protocol (WT3).” The patient testimonials are not intended to imply scientific evidence to the medical community. Every physician is familiar with the placebo effect and how it can confound outcome results. Evidence confirming the efficacy of the WT3 protocol and the use of specific herb supplements comes from the reports of doctors who have extensive clinical experience diagnosing and successfully treating Wilson’s Syndrome. They report success rates typically above 80 percent. A sampling of those reports can be found on the website (http://wilsonstemperaturesyndrome.com/eManual/Comments/).
It is Dr. Wilson’s personal experience treating more than 5,000 patients, combined with the personal reports from other doctors that provide confidence in the validity of the condition and its treatment. This type of confirmation, of course, constitutes anecdotal clinical evidence. There is a clear need for published studies to evaluate clinical experience. However, as the medical research community is well aware, funding for outcome studies of non-patentable treatments is sparse.
Physicians, including endocrinologists, who treat Wilson’s Syndrome using the T3 protocol and/or herbal supplements, welcome any ATA efforts to pursue properly designed clinical trials to validate the suspected link between thyroid system deficiency and the constellation of chronic symptoms that diminish the quality of the lives of the potentially millions of America who suffer from this condition.
It is our hope that this point-and-counterpoint exchange will be the beginning of a constructive dialogue between the Wilson’s Syndrome community and the American Thyroid Association.
If you wish to contribute to this response to the ATA, or to offer comments,
please e-mail your suggestions and input to
ATAresponse@gmail.com
