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Why is Sara Rosenthal Attacking Thyroid Patient Advocacy...And Thyroid Patients?

Patient Misconceptions and Ethical Challenges in RAI

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Updated October 09, 2006

Why is Sara Rosenthal Attacking Thyroid Patient Advocacy...And Thyroid Patients?
Sara Rosenthal has written a controversial article, published in the September 2006 issue of the Journal of Nuclear Medical Technology. The article, titled "Patient Misconceptions and Ethical Challenges in Radioactive Iodine Scanning and Therapy," claims that thyroid information patients get online and in books furthers "misinformation" about radioactive iodine (RAI) scanning and treatment.

In the past, Rosenthal wrote and self-published several supposedly "patient-oriented" publications through her Sarahealth and YourHealthPress web sites, along with several other books that claim to help patients make "informed decisions" and "self-educate about a variety of health conditions," including thyroid problems. She has presented herself as qualified to write on thyroid disease because two decades ago, she survived thyroid cancer in her early 20s.

Yet Rosenthal writes this article not as thyroid patient or patient advocate, but rather in her new role as bioethicist. Rosenthal recently completed a Ph.D. in bioethics, moved to the U.S. from Canada, married University of Kentucky endocrinologist Kenneth Ain, and started a job teaching bioethics at the university where Ain is on the faculty.

She sums up her premise in the following quote from her article:

Patients who are inadequately counseled about RAI...will self-educate about RAI, relying on patient-generated books and Web sites to ''translate'' the medical literature for them as well as anecdotal accounts by patients about the health effects of RAI. As a result, the complexity of RAI as a health topic for patients with no medical background is wide open for misinterpretation.... Additionally, patients who are appropriately counseled may still be vulnerable to misinformation that they read in patient advocacy literature...(1)

Are Web Sites, Books and Advocacy Materials Sources of Misinformation?

In accusing Web sites, books and advocacy materials of providing misinformation, Rosenthal has abandoned a patient advocacy perspective, choosing to adopt the defensive posture and anti-advocacy argument typical of many of today's physicians. Rather than encourage empowerment and education, the argument is that the "Doctor" must better educate patients regarding their options, because self-education for patients leads to misleading books, Web sites, patient advocacy literature, and anecdotal accounts. Even when information is correct, those without a medical education are unable to understand what they read.

Rosenthal footnotes her article with references to a number of popular books and Web sites that discuss thyroid disease and RAI treatment. (Rosenthal fails, however, to footnote her own Web sites, books and self-published pamphlets on thyroid disease.)

Clearly, there are errors and misinformation to be found in books, Web sites, and other materials that discuss thyroid disease. But errors and misinformation -- not to mention glaring omissions -- are rampant on professional organization Web sites, in medical journals, and at medical meetings as well.

One can't forget, for example, the makers of Synthroid's efforts to suppress journal publication of research showing the bioequivalence of Synthroid to its competitors. Or the obvious influence of various thyroid drugmakers on the public positions of various thyroid organizations. Dr. Sidney Wolfe of Worst Pills/Public Citizen recently called for a ban on Armour Thyroid, claiming that it was made of cow thyroid and sold over the counter. And perhaps most egregious is the endocrinology community's obvious inability to agree on what is their most basic diagnostic and treatment management tool: what is a normal TSH? The debate over the TSH reference range has been going on for almost 4 years, and shows no signs of resolution. A patient can get a TSH test result of 4.0, and be told by one doctor that she is hypothyroid, and be told by another that she has normal thyroid function.

When it comes to misinformation, the medical community is contributing more than its fair share.

Do Doctors Agree that Hypothyroidism is the Goal of RAI Therapy for Hyperthyroidism?

Rosenthal bases her argument on a number of questionable premises, including this one: "According to GD listserves, hypothyroidism is not entirely expected and is seen as proof that RAI is risky or improperly dosed. This misinformation originates with inadequate patient counseling regarding the goals of therapy and informed consent." (1)

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