Wilson's syndrome, also called Wilson's temperature syndrome, is not to be confused with Wilson('s) Disease, a rare genetic or inherited disorder that causes excess copper to accumulate in the body (see my June 2013 newsletter Wilson Disease).
The term 'Wilson's syndrome' was coined in 1990 by Dr Denis Wilson, a physician practicing in Longwood, Florida. Its manifestations include fatigue, headaches, PMS, hair loss, irritability, anxiety and panic attacks, fluid retention, depression, reduced memory, low sex drive, unhealthy nails, dry skin and dry hair, easy weight gain, cold and/or heat intolerance and some 50 or so other symptoms. These are listed in an article Symptoms of Wilson's Syndrome by Dr Robert F. Cathcart (www.mall-net.com/cathcart/wilsons).
Dr Wilson claims that Wilson's syndrome is "the most common of all chronic ailments and probably takes a greater toll on society than any other medical condition."
Wilson's syndrome is said to have four major characteristics (www.wilsonssyndrome.com)
- The symptoms of Wilson's syndrome are classic for low thyroid function.
- The symptoms tend to be brought on or worsened by the stress of illness, injury, or emotional trauma.
- Wilson's syndrome is characterised by a low body temperature.
- Thyroid blood tests are normal, but the symptoms are often corrected with a special thyroid treatment.
80% of Wilson's temperature syndrome sufferers are women.
Temperature – Normal and in Wilson’s Syndrome.
98.6 degrees Fahrenheit (37 degrees Celsius) taken by mouth is regarded as “normal temperature”.
Those who suffer from Wilson's syndrome almost always have temperatures that run below 98 degrees, with 97.8 degrees being typical. Less than 10% of patients have temperatures in the 98.0 - 98.4 degree range. Some patients have temperatures that are less than 97 degrees, and a few report temperatures in the 93 - 96 degree range. Treatment is aimed at raising the temperature to normal.
Wilson’s Syndrome is an alternate medical concept which is not recognised as a medical condition by mainstream medicine.
Is Wilson's Syndrome an Accepted Medical Diagnosis?
Dr Todd Nippoldt of the Mayo Clinic states:
"No. Wilson's syndrome, also referred to as Wilson's temperature syndrome, isn't an accepted diagnosis. Rather it is a label applied to a collection of nonspecific symptoms in people whose thyroid hormone levels are normal. Proponents of Wilson's syndrome believe it to be a mild form of thyroid hormone deficiency (hypothyroidism) that responds to treatment with a preparation of a thyroid hormone called triiodothyronine (T3). However, the American Thyroid Association has found no scientific evidence supporting the existence of Wilson's syndrome." (www.mayoclinic.com/health/wilsons-syndrome)
The American Thyroid Association made the above quoted statement in 2005. In a public health statement, they concluded:
- The diagnostic criteria for Wilson's syndrome - low body temperature and nonspecific signs and symptoms such as fatigue, irritability, hair loss, insomnia, headaches and weight gain - are imprecise.
- There's no scientific evidence that T3 performs better than placebo in people with nonspecific symptoms as those described in Wilson's syndrome.
Hypothyroidism can be diagnosed by blood tests that detect insufficient levels of thyroid hormone.
The symptoms of Wilson's syndrome are similar to:
- Chronic Fatigue Syndrome
- Multiple Chemical Sensitivity
- Chronic Candidiasis.
The symptoms of Wilson's syndrome are also typical of:
- Psychological and Social Stress.
Diagnosis of Wilson's Syndrome
A syndrome is a group of symptoms that consistently occur together, or a condition characterised by a set of associated symptoms.
The 60 or so symptoms that are said to occur in Wilson's syndrome (see www.mall-net.com/cathcart/wilsons as detailed above) cover nearly every conceivable medical condition. This hardly fits the definition of a syndrome. However, there does appear to be a core group that occur commonly, namely those listed by Dr Cathcart.
If the history given by the patient is suggestive of a diagnosis of Wilson's syndrome, then the diagnosis is confirmed by "an average temperature that runs consistently below normal". It is recommended that the temperature is taken in the mouth using a mercury thermometer. It is to be taken "every 3 hours, 3 times a day, starting 3 hours after you wake up". The daily average is calculated by adding up the temperature for the day and dividing by 3. The temperature is to be checked for several days. Normally, the body temperature is low in the morning on waking (97.5 degrees F, not 98.6 the ‘normal’ body temperature), and goes higher in the afternoon and lower again in the evening. If the temperatures are low, as set out above, then it is suggestive of a diagnosis of Wilson's syndrome.
Recommended Treatment for Wilson's Syndrome
Triiodothyronine, T3, is the active thyroid hormone the body makes from thyroxin, T4. It is suggested that in Wilson's syndrome, the T4 levels (blood tests) are normal, but there is an impaired conversion to T3.
The treatment of Wilson's syndrome is oral T3. The starting dose is 7.5 micrograms (mcg) twice a day, twelve hours apart. The dose may be increased if the symptoms do not improve and the temperature does not rise to 'normal' levels. A detailed protocol can be found at www.wilsonssyndrome.com.
American Thyroid Association has stated that there is no scientific evidence that shows that T3 performs any better than a placebo. If this is so, then the potentially dangerous hormone T3 probably should not be recommended.
A non-T3 preparation that targets the thyroid would be an appropriate initial way forward. One example of such medication is Thyrocsin (from Thorne Research). The active ingredients are vitamins C, E, B12, iodine, zinc, selenium, copper, L-lysine and ashwagandha root extract. It is claimed that these are "nutrients and botanicals that enhance T4 production and provide key nutrients for peripheral conversion of T4 to T3". (Available from www.iherb.com)
There is a close relationship between the symptoms of Wilson's syndrome and the Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivity (MCS) and fibromyalgia. All these conditions have had a checkered history, including "it does not exist" and "it's all in the mind", and when it is accepted that the conditions do exist, there is a range of explanations and postulated causes. Anxiety and depression can also present with a lot of the symptoms stated to be experienced in Wilson's syndrome.
Underlying diagnosable medical conditions need to be ruled out by a detailed history and appropriate testing and investigations. An understanding and sympathetic health professional is essential in the management of a patient with multiple symptoms in the absence of identifiable disease. Patients diagnosed with CFS, MCS or Wilson's syndrome also require supportive counselling (see my August 2006 newsletter Supportive Counselling).
*Copyright 2014: The Huntly Centre.
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