Is Wilson’s Syndrome a Legitimate Thyroid Disease Diagnosis?

By Catherine J. Tang, MD

It’s not uncommon for a patient to visit a doctor complaining of nonspecific symptoms that can make a conclusive diagnosis challenging. Such is the case with a little-known and often-controversial diagnosis call “Wilson’s Syndrome” or “Wilson’s Temperature Syndrome.”

Wilson’s Syndrome was first identified and defined in 1990 by family physician Dr. E. Denis Wilson to describe a constellation of common symptoms including, but not limited to, fatigue, chilliness, constipation, weight gain, dry skin, swelling, joint pains, hair loss, brittle nails, insomnia, depression and anxiety. Dr. Wilson developed the concept after observing people with symptoms of an underactive thyroid (as described above) and low body temperature (consistently averaging below 98.2°F), yet whose blood tests showed normal thyroid levels.

Dr. Wilson theorized that these common symptoms often found in hypothyroidism are due to low levels of T3, which is a form of thyroid hormone in the body. The thyroid gland, located in the neck, produces two thyroid hormones, T3 and T4. However, most T3 is made outside the thyroid gland since the body changes T4 into the more active T3 once it is released into the bloodstream and has reached its target in the body. This T3 has an effect on almost every organ system and is needed to regulate the body’s metabolism and energy expenditure.

Dr. Wilson suggested that under severe stress, the body converts less T4 to T3 (which may not be picked up by blood tests) and hypothesized that this slows down the metabolism and lowers the body temperature, which manifests as various symptoms as mentioned above. As such, he started treating his patients with thyroid hormones, both T3 and T4, despite their normal blood tests, and claimed the symptoms resolved upon treatment. On his website, Dr. Wilson describes several patient cases who benefited from this treatment strategy, including that of his wife. Further, Dr. Wilson advocates treatment with herbal supplements and has co-founded an herbal supplement company with a naturopathic practitioner to provide these herbs.

Could I have Wilson’s Syndrome?

In short, the answer is no. Wilson’s Syndrome is not an evidence-based diagnosis and is not accepted by the medical community, including almost all practicing and board-certified physicians, including endocrinologists who specialize in identifying and treating hormone disorders. While it is true that lower T3 levels have been associated with acute or chronic illnesses, including psychiatric disorders, neither clinical nor laboratory research have shown that T3 therapy can improve or restore wellness. In fact, the body’s conversion of T4 to T3 is tightly regulated by the target organs, and giving excessive T3 may actually cause harm, including heart palpitations, anxiety, heart failure and even death.

Still, these symptoms are real and can cause significant suffering and functional disability in some people. And while many of these symptoms also overlap with those of hypothyroidism, they are also commonly found in the general population. In fact, it is likely that nearly all of us have experienced these symptoms at some points in our lives. Some may indeed have true hypothyroidism, but most will respond well to thyroid hormone treatment. T4 is the preferred therapy in hypothyroidism as it mimics the body’s natural way of providing thyroid hormone to the cells.

Why is Wilson’s Syndrome so misleading?

Giving a name to a compilation of generic, nonspecific and unrelated symptoms does not make it a true medical diagnosis. As mentioned previously, most of us have experienced some of these symptoms at various times in our lives. It does not necessarily mean that we have a disease. Rather, there are often other factors that can contribute to these symptoms, including concurrent chronic illnesses such as heart disease and diabetes; psychiatric conditions such as depression and anxiety; and life circumstances such as family illnesses, divorce, financial troubles, or high levels of stress.

A key component of a Wilson’s syndrome diagnosis is a low body temperature, a symptom that Dr. Wilson proposed treating with T3 (either prescription or herbal) to restore one’s normal body temperature. This concept is misleading, as it suggests that we should all have one body temperature – 98.6°F – all the time. However, studies have shown that our body temperatures actually fluctuate throughout the day and, in younger women, also depends on the timing of their menstrual cycle.

Moreover, T3 treatment for Wilson’s Syndrome is not based on scientific evidence, since it hasn’t been submitted to rigorous clinical or laboratory research. Generally, the best way to discern if a treatment is effective is to conduct an unbiased study, in which neither the researchers nor the participants know who is taking the drug being tested and who is taking a placebo (e.g., sugar pill). Frequently, the proposed therapy is also compared with conventional treatment to see if one is superior or if both treatments are equivalent. However, Dr. Wilson’s experience of using T3 to treat a variety of nonspecific symptoms is entirely anecdotal and subjective. Because no clinical trial was conducted, we don’t know if his results are reproducible, nor do we know the success or failure rates of his therapy and its potential side effects. In addition, he advocates using herbal supplements, which are not FDA regulated and their ingredients cannot be verified.

Furthermore, Wilson’s Syndrome has a similar name to and, thus, can be confused with a real and potentially lifethreatening medical disorder called Wilson’s disease. Wilson’s disease is a rare, inherited disorder that causes copper to accumulate in the liver, brain and other vital organs.

What can I do if I have these symptoms?

You should discuss your symptoms with your primary care physician (PCP) to make sure that your other medical problems are appropriately managed, as well as being up-todate with preventative care such as age-appropriate cancer screening, cholesterol screening and immunizations. If your PCP feels that a referral to an endocrinologist is indicated, then you may undergo some blood tests to see if you have a hormonal problem.

Here are some other things to consider: If you are overweight, ask your doctor if you can enroll in a dedicated weight-loss program, or you can do it on your own by cutting out junk food and doing at least 30 minutes of moderate-intensity aerobic exercise four days a week. If you have diabetes, make sure that your blood sugar is well controlled. If you snore, ask your PCP if you should undergo testing for sleep apnea. If you have anxiety or depression, make sure that you stay connected with your mental health professional and your medications are appropriately adjusted. If you recently had stressful personal circumstances, see if you can obtain support from family, friends, or a mental health professional. Some patients have found alternative approaches helpful, including cognitive behavioral therapy, exercise, acupuncture and tai chi, a form of mind-body practice exercise that originated in China as a martial art and has value in treating or preventing many health issues.

A healthy, well-balanced diet and regular exercise are beneficial for everyone. In fact, there are studies that have shown that they can improve many health parameters, including lowering the cholesterol, reducing anxiety and depression, and improving one’s quality of life. Try to limit your intake of saturated fats, trans fats, and simple sugars which are found in many processed food and snacks, cheese, candy, soda, chips and pretzels and frozen “TV” dinners. Instead, make a goal to cook your meals at home and get most of your nutrition from vegetables, fruits, whole grains and lean protein.

In addition, try to add more physical activity in your life – walking just 30 minutes a day is beneficial. Other simple strategies to increase your daily exercise include parking your car farther from your destination and walking the distance or taking the stairs rather than the elevator. Every little activity counts and it might make the difference between feeling well and unwell.

And remember — although it's understandably frustrating to have persistent symptoms your physician can't readily explain, it’s much worse to accept an unrecognized diagnosis such as Wilson’s Syndrome. Unproven therapies for so-called Wilson's Syndrome may leave you feeling sicker, while a treatable condition can go undiagnosed.