Wilson's Syndrome: A Response to the American Thyroid Association
In 2004, the American Thyroid Association posted a position statement regarding Wilson’s Syndrome on their Web site. In the interest of providing a balanced perspective, we offer, in the following pages, a point-by-point response to the ATA's summary.
 
“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.
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
“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 the exact 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.
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
“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.”
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
“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.
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
© 2009 Wilson's Syndrome Institute