Are Thyroid Patients Unable to Make Informed Decisions Because We're Depressed, Tired, Not Thinking Clearly, or Anxious?
Rosenthal seems to be arguing that patients aren't able to make appropriate decisions -- or to genuinely consent to particular treatments or procedures -- because of the mental impact of thyroid problems. She writes:When people do not understand the information relevant to a decision, do not appreciate the reasonably foreseeable consequences of a decision or lack of decision, or are not able to decide about a procedure because not enough information has been disclosed, they are considered to lack a genuine capacity to consent. For patients with thyroid conditions, fear of RAI, hypothyroidism, or thyrotoxicosis clearly can become a barrier to capacity. Depression, unclear thinking, and fatigue are common features of hypothyroidism, and extreme anxiety is a common feature of patients with thyrotoxicosis. Depression and anxiety also are common in patients with thyroid cancer. (1)It's true that the mental symptoms of thyroid disease can have an impact on the decision-making abilities of some patients. But what percentage of patients actually fail to proceed with RAI because their depression and anxiety makes them unablel to "understand the information," versus those who patients who do their research, and forego RAI because they have legitimate concerns about the side effects, long-term effects, or in the case of hyperthyroidism treatment, resulting lifelong hypothyroidism . The answer is, we don't know. Those studies have not been done.
Rosenthal does not address this, preferring to adopt the patronizing tone of some physicians who view patients as too muddled, depressed, or fuzzy-thinking to be able to make good decisions.
What do the Advocacy Books REALLY Say??
Rosenthal mischaracterizes a number of patient advocacy books, charging that they "assert that the TSH test is 'inappropriate' for detecting hypothyroidism" and that they presents levothyroxine sodium (i.e., Synthroid) as a "harmful therapy," that "desiccated thyroid hormone confers greater benefit," and that "triiodothyronine [T3] is appropriate therapy for the long-term management of hypothyroidism, and that "the TSH test is inappropriate for detecting thyroid function."Unfortunately, Rosenthal's accusations are not based on fact, and are exaggerations and generalizations rather than an accurate reflections of the contents of these books. And, by misstating the actual contents of some of the books, and failing to include her own non-medical books on thyroid disease, Rosenthal appears to have as her goal to discredit the works of other patient advocates, including my book Living Well With Hypothyroidism, Elaine Moore's Graves' Disease: A Practical Guide , the National Graves' Disease Foundation's Graves' Disease: In Our Own Words , and several others.
It's particularly curious that she attacks Moore's Graves' Disease: A Practical Guide. After the success of Moore's book, Rosenthal herself went on personally commissioning Moore to write a book that Rosenthal subsequently published as part of her commercial/for-profit publishing company, Sarahealth. The book is called Thyroid Eye Disease: Understanding Graves Ophthalmopathy . (Read Elaine Moore's September 5, 2006 rebuttal letter responding to Sara Rosenthal's article now.)
[A Telling Error: Footnote #15 in Rosenthal's article is one example of the general carelessness of this article, and her unfamiliarity with the sources she is criticizing. The footnote states that Elaine Moore's website is at http://www.elainemoore.com, and states that the site was "accessed December 19, 2005" -- yet for several years, this site has been the home page of a children's book writer also named Elaine Moore, and is currently not "unavailable." (The site appears to have been taken offline in Spring of 2005. The Internet Way Back Machine shows what the site last looked like.) The Elaine Moore to which Rosenthal refers -- and whose work Rosenthal herself has published -- has a web site located at http://www.elaine-moore.com.]
In the case of my own advocacy efforts, a careful reading of my book makes it clear that my perspective is straightforward: patients deserve to know all of their options when it comes to treatment for both hyperthyroidism and hypothyroidism.
Many patients who receive RAI treatment are never even told of the option to go on antithyroid drugs, or the fact that some patients who go on antithyroid drugs have the possibility of complete remission without lifelong hypothyroidism. I feel that this failure to disclose key information is highly unethical, and an issue I am attempting to address in my writing and advocacy.
And when it comes to thyroid hormone replacement, I do not favor synthetic over natural thyroid, nor do I suggest that levothyroxine is harmful, or that desiccated thyroid is better.
