As we discussed in the Introduction, thyroid patients are usually forced to self-educate about thyroid disease. In fact, this was certainly my (Sara's) experience when I was diagnosed with thyroid cancer in the early 1980s. Indeed, throughout the 1980s and early 1990s, it was difficult to find information on thyroid disease. By the late 1990s, as the Internet became much more accessible and popular, thyroid patients began surfing for thyroid information; thyroid websites and list-servs abounded, as health became the second fastest growing sector on the Web (after pornography!).
For the most part, access to thyroid information and other thyroid patients has been a wonderful turn of events for thyroid patients. But, alas, like any other health information on the Web, some thyroid information is credible and some is not so credible. Some truth and some fiction can be mixed on the same sites—often run by patients themselves, with the best of intentions. There are also those who have agendas, those who have products to sell you (for example, newsletters or supplements) or sponsors to keep happy. Information is often sensationalized to attract browsers. Worse, scientific articles may be completely misconstrued to suit the agenda of the site.
Misconceptions and misinformation about thyroid disease can confuse and even harm vulnerable thyroid sufferers. For example, because of the many diffuse hypothyroid symptoms (see Chapter 3), hypothyroid patients, in particular, can be easy targets for weight-loss products, "energy boosters," and so forth. Busy thyroid specialists often don't appreciate how convincing some material can be when the reader has no medical background or has decreased ability to think clearly, if hypothyroid, about the material he or she is reading. Even I (Sara) have difficulty deciphering fact from fiction after all the years I've spent writing about thyroid disease. But when people are suffering, and feel desperate for answers, they are easy prey for such material.
After a lengthy misinformation search, we found that much of the thyroid misinformation is like a bad rumor; it gets recycled from some book to some website to some listserv—over and over again. And each reader that comes across it for the first time thinks it's something new or the answer to seemingly hypothyroid symptoms, which can be explained by many other conditions. For example, some authors regenerate long dead and debunked theories about thyroid disease origins, symptoms, and appropriate testing and therapies. Some materials successfully create the illusion that these theories are revolutionary and that there is a widespread conspiracy among allopathic or conventional practitioners to keep them hidden from patients. Some materials on the Web and in published books present just plain old wrong information about how the thyroid gland and thyroid hormone work in the body, especially giving rise to misinformation about various thyroid hormone preparations and brands.
Some materials suggest that conventional thyroid specialists don't understand thyroid disease as well as osteopathic, naturopathic, or other alternative practitioners (with no, or questionable training in endocrinology), causing some patients to abandon proven, ironclad, established therapies for bizarre and unsupported treatments. From a sociological perspective, there is an interesting pattern of cultlike mind control on some thyroid listservs and in some organizations. Conventional practitioners who try to educate patients about misinformation, and spend (or waste) time challenging wrong information, frequently get attacked on the Web, or labeled "closed minded" (as if it were a bad thing instead of the ethical thing to do when confronted with false claims by patients). This creates enormous frustration among thyroid specialists and their patients.
There are conventional practitioners who support (or, at least, don't oppose) reasonable complementary therapies, such as massage or aromatherapy (see Chapter 22), but have zero tolerance for therapies that are clearly sham—causing patients to abandon lifesaving therapies for sheer quackery or potentially harmful therapies. For example, physicians frequently encounter horror stories engendered by interactions with a variety of special interest pseudoscience groups.
The purpose of this chapter is not to point fingers but to correct core conceptual myths and misinformation in an effort to help you make the best informed decisions (see Chapter 21). Thus, we will not cite specific sources for the common misconceptions we correct (since they resurface in hundreds of places like gossip), unless we are addressing a specific "syndrome" or fake thyroid disease with its own website or following.
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