Beware Bogus ‘Wilson’s Syndrome’ Diagnosis

For endocrinologist Marwan Hamaty, MD, fatigue is one of the common complaints he hears from his patients, but it’s also one of the hardest to treat.

“There can be so many reasons that people experience fatigue, ranging from medical conditions like sleep apnea and hypothyroidism to psychological problems like depression or simple lifestyle factors like not getting enough sleep. That includes working long hours or night shift and even not having a vacation,” Dr. Hamaty says.

Sometimes, there’s no answer to explain a person’s fatigue and that can be frustrating for a patient to hear. With no firm answer, Dr. Hamaty explains, all too often, a patient will go looking somewhere else for answers, especially to the Internet, which can lead to a problematic and incorrect self-diagnosis. While some websites are reliable, others have unverified information.

“Wilson’s syndrome” is one such example that’s spread online even as its medical veracity is questionable at best. (This isn’t to be confused with Wilson Disease, an established and studied genetic condition.)

Originally “developed” by Denis Wilson, MD, this syndrome is a collection of vague symptoms (including fatigue, hair loss, and depression) that, according to Dr. Wilson, is the result of low body temperature and low thyroid hormone despite blood tests showing that a person’s thyroid levels are normal.

The legitimacy of “Wilson’s syndrome” has been rejected and considered an unaccepted diagnosis by the American Thyroid Association as well as by the large majority of physicians. Here are a few reasons why.

There’s no scientific support for ‘Wilson’s syndrome’

There’s no evidence in the medical literature to support the existence of such a condition, says Dr. Hamaty. Blood tests can easily confirm or rule out any problems with thyroid function, so the physician and the patient can move on to consider other possible diagnoses.

Additional research has also disproven one of Wilson’s main tools for diagnosis: a body temperature below 98.6 degrees Fahrenheit (or 37 degrees Celsius). But newer studies suggest the average person today actually runs a little cooler than that – somewhere between 97.5 F and 97.9 F. And the body’s normal temperature can fall in a wider range than previously thought, between 97 and 99 degrees, and sometimes even outside of that.

The symptoms are nonspecific and common

So many common conditions can account for the symptoms he identifies as part of this syndrome, including fatigue, migraines, premenstrual syndrome and weight gain.

As the ATA notes, “the typical adult has one of the symptoms every four to six days, and more than 80% of the general population has one of these symptoms during any two to four week period.”

Treating a nonexistent thyroid condition can result in overlooking the real cause of the patient’s symptoms.

Treating a nonexistent condition can cause dangerous side effects

Dr. Wilson recommends treatment of his syndrome with a specially prepared dosage of T3, a hormone used to treat actual hypothyroidism (low thyroid hormone levels).

This medication can give patients a boost much like caffeine does in the short term. It also can cause insomnia, irregular heart rate, high blood pressure, bone loss and muscle loss – including heart muscle loss.

“The longer a patient uses it and the higher the dosage, the harder it is to reverse the negative effects of the medication. Furthermore, when a patient takes a medication and is still not feeling well, they will be even more frustrated. Often, treatments with high dosages of thyroid hormones are tried to improve their symptoms, which are counterproductive practices,” Dr. Hamaty notes.

The bottom line

“Fatigue can result from many conditions and it’s important to focus our attention and care on its legitimate medical and psychological causes,” Dr. Hamaty says.

“To patients, I say, be skeptical of the diagnosis of ‘Wilson’s Syndrome,” he adds.

“It’s simply not proven to exist and not supported by the medical community. Most importantly, trying to treat it can be a dangerous approach that undermines your health and wellness, rather than improves it.”