One of the hallmarks of alternative medicine is the “fake disease”. Fake diseases don’t actually exist – they are invented without any objective evidence showing that they are real. Fake diseases tend to emerge from vague symptoms which can’t be attributed to a specific medical diagnosis. This is not to say what patients are experiencing isn’t real – the issue is the diagnosis, and the practitioner making the call. As has been pointed out by other SBM contributors, it’s understandable to want reasons and answers when you have debilitating symptoms. But symptoms need to be studied in rational and objective ways in order to understand the underlying illness – call it the “root cause” if you prefer. The diagnosis guides the treatment plan, so getting a diagnosis right is essential. While a group of vague symptoms might lead a medical doctor to run tests to rule out serious illness, alternative medicine providers already know the underlying problem. It’s your Chi. Your energy fields. Your diet. Whatever it is, it’s usually your fault. Adrenal fatigue is a fake disease. So is multiple chemical sensitivity, and Morgellons (delusional parsitosis). “Chronic” Lyme disease is another fake disease. Rather than offer a guide to proper care, a fake disease is a distraction from the truth.
Fake diseases can be unjustified extensions of real diseases as well. You can definitely have a fungal infection throughout your body – and it may send you to the intensive care unit. But “chronic candida” infection, as diagnosed by alternative medicine purveyors, is a fake disease – it’s a collection of vague symptoms usually attributed to the bread, sugar and gluten in your diet that, while undetectable to modern medical testing, can miraculously be cleared with a detox kit. Food intolerances, when diagnosed by alternative medicine providers, are fake diseases as well – diagnosed using unvalidated testing and then treated with food restrictions and supplements.
Alternative medicine, fake diseases, and the thyroid
I’ve covered off the pseudoscience of thyroid disease before. There’s a lot. From a scientific perspective, the thyroid is a bit like the thermostat in your home. Crank up its function, and you’re hyperthyroid: heat intolerant, a high heart rate, and maybe some diarrhea. Turn it down, and you’re hypothyroid: cold, tired, constipated, and maybe depressed. The body produces two thyroid hormones: thyroxine (T4) and liothyronine (T3). Primary hypothyroidism is the result of insufficient production of T4 by the thyroid gland, and the major cause is autoimmune thyroid disease (Hashimoto thyroiditis). Those with hypothyroidism may describe weight gain, cold intolerance, dry skin/hair, constipation and hair loss. Because these symptoms are so general, diagnosis must be based on lab tests. There’s a continued debate about treating those with borderline hypothyroidism, and the evidence seems to suggest that the benefits from treating this group of patients is unclear. In general, most people with hypothyroidism can do well on thyroxine T4, and take it for life.
In alternative medicine, the thyroid isn’t just an organ. It’s a symbol. And if you’re sick – yep, it’s your fault:
In naturopathic medicine, the thyroid reflects a woman’s voice in her life. Many women have experienced a “trapped voice,” and by the time perimenopause arrives, the accumulated effect gives rise to symptoms, including poor thyroid function. Over and over we have seen that when women make progress in using their voices, their thyroid symptoms subside.
Having established that dysfunction is your fault, the next step is to invent a fake condition, and the condition.
Beware diseases invented and not discovered
In 1990, E. Denis Wilson, a medical doctor in Florida invented what he modestly called “Wilson’s Temperature Syndrome” a new condition he claimed was widespread, and causing a huge array of symptoms: fatigue, headaches, irritability, fatigue, dry skin, asthma, allergies and more. (You’ll probably test positive [PDF]. I did.) Just like “chronic candida”, Wilson claimed to have found low thyroid function in those that, from a conventional medical perspective, have normal thyroid function. (Note: Wilson’s Temperature Syndrome is not Wilson’s disease, a real disease of copper metabolism). Wilson claimed his condition could be diagnosed by measuring body temperature. A lower than normal temperature confirms the diagnosis. According to Wilson, it was the slight reduction in body temperature that apparently causes the body’s metabolic pathways to function-sub-optimally, causing the vague symptoms reported. Wilson recommended the use of thyroid hormone (T3) to treat the syndrome.
Your medical doctor doesn’t diagnose Wilson’s Temperature Syndrome because it’s a fake disease. Naturopaths apparently believe it is real. Canadian naturopath Jen Newell recently wrote about her willingness to treat this it:
One complaint I see frequently in practice is that despite having normal blood work, people come to see me because they don’t feel well. They struggle to lose weight and have noticed that their hair is thinning or shedding; they are exhausted, have anxiety and depression. Often these concerns began after a significant stressor or chronic stress and even after that stress has passed they still feel awful. They are convinced that their thyroid isn’t working properly and despite what the blood work says, they are often right. What they are experiencing is known as Wilson’s Temperature Syndrome and is the suboptimal functioning of the thyroid gland. I recently attended a conference about this concern and am excited to help these patients really achieve their health goals.
Wilson’s Temperature Syndrome is a diagnosis of exclusion; and the best method to identify it is through a therapeutic trial. In a therapeutic trial, we begin treatment on a patient and monitor their response. To assess for Wilson’s Temperature Syndrome you can also assess the average body temperature of the patient. Wilson’s Temperature Syndrome is characterized by oral body temperatures averaging below 98.6°F or 37°C.
Newell is just one example, as there are dozens of naturopaths making similar statements, all claiming they can treat the fictitious syndrome. Which is remarkable, because the science is actually pretty clear and easy to find on Wilson’s Temperature Syndrome. One wonders what went on at this “conference”.
There’s good evidence that shows Wilson’s Temperature Syndrome is a fake disease:
- There is no published evidence that shows it is real. The only evidence is anecdotal, from those that take T3, and those that prescribe it.
- The diagnostic criteria are imprecise:
- Wilson’s laundry list of symptoms are nonspecific and have never been validated. The list is so exhaustive that most adults will experience one or more of the symptoms at any time. While some are consistent with genuine hypothyroidism, others have not been linked thyroid function.
- Body temperature naturally fluctuates. The idea that normal body temperature is 98.6°F was disproven by Mackowiak, et al. in 1992. If you follow Wilson’s criteria, you’ll find the Syndrome, whether you’re ill or not.
- There is no evidence that treating someone with T3 is any better than a placebo for the non-specific symptoms listed.
- There are no double-blind trials that have determine that T3 is superior to placebo for this condition.
- The use of T3 in the absence of a clear medical or biologic need is potentially dangerous.
- Using T3 instead of T4 can be harmful, especially to the bones (think osteoporosis) and the cardiovascular system (think heart attack). Side effects can be life threatening.
The Florida Board of Medicine didn’t look kindly on Wilson and his syndrome. In 1992 it reviewed the cases of eight of his patients (one that died after thyroid treatment). Following its review it suspended his medical licence, fined him $10,000 and ordered him to undergo psychological testing. It’s not clear he ever practiced again. Instead he’s focused on promoting his syndrome, and selling supplements to treat his syndrome.
Position statements and guidelines:
Given the risks of treating a fake disease with potentially harmful drugs, there are a number of position statements published:
The American Thyroid Association:
The American Thyroid Association has found no scientific evidence supporting the existence of “Wilson’s syndrome.” The theory proposed to explain this condition is at odds with established facts about thyroid hormone. Diagnostic criteria for “Wilson’s syndrome” are imprecise and could lead to misdiagnosis of many other conditions. The T3 therapy advocated for “Wilson’s syndrome” has never been evaluated objectively in a properly designed scientific study. Furthermore, administration of T3 can produce abnormally high concentrations of T3 in the blood, subjecting patients to new symptoms and potentially harmful effects on the heart and bones.
The ATA supports efforts to learn more about the causes of somatic symptoms that affect many individuals, to test rigorously the idea that some as yet unidentified abnormality in thyroid hormone action might account for even a small subset of these symptoms, and to pursue properly designed clinical trials to assess the effectiveness of lifestyle, dietary, and pharmacological treatments for these common ailments. However, unsupported claims, such as those made for “Wilson’s syndrome,” do nothing to further these aims.
The Endocrine Society:
In summary, Wilson’s syndrome—a supposed thyroid hormone deficiency that is not supported by science—describes common symptoms that many people experience. Doctors worry that some of these symptoms may be due to serious medical problems that can be treated successfully, but require prompt medical attention. Pursuing hormone therapy for Wilson’s Syndrome might distract patients from seeking a proper diagnosis of a treatable medical condition. Inappropriate therapies, unfortunately, may cause serious health consequences.
The Mayo Clinic:
Is Wilson’s syndrome a legitimate ailment?
No, Wilson’s syndrome, also referred to as Wilson’s temperature syndrome, isn’t an accepted diagnosis. Rather, Wilson’s syndrome is a label applied to a collection of nonspecific symptoms in people whose thyroid hormone levels are normal.
There’s no credible science to suggest that Wilson’s Temperature Syndrome exists. Invented out of whole cloth by one person, this pseudoscience persists today, mainly in the practices of alternative medicine purveyors. Rather than a medical condition, Wilson’s Syndrome is more accurately a marketing strategy: Invent the disease (where one doesn’t exist) and then sell the cure. In this case, the “cure” isn’t cheap or harmless: First there are the unnecessary supplements. Then there’s T3, a potentially-hazardous thyroid drug that can cause serious harm when used inappropriately. From a science-based perspective, it’s ethically and professionally unacceptable to give thyroid hormones and related supplements to people with objectively normal thyroid function. The naturopathic approach to this fake disease neatly highlights the dichotomy of so-called “integrative” medicine and the challenge it presented to science-based practice.
Picture from flickr user ilovebutter used under a CC licence.