Steps Toward Informed Decision Making

The following steps can help you make more informed decisions about doctors and treatment options.

• If you have a thyroid problem, request a referral to an endocrinologist or thyroid specialist even if it's outside your community or referral network. This is a reasonable standard of care you can expect if you have health insurance. Use the resources in Appendix A under "Finding a Thyroid Specialist" to help you find reasonable specialists.

• Appoint a surrogate decision maker to advocate on your behalf in the event that you are ill or unable to take in all the information you need. If you are severely ill from an untreated thyroid problem, your surrogate decision maker can help to organize and record the information you need to get better.

• If you don't speak English well, bring a translator with you to the doctor (your son or daughter, a friend). It is not reasonable to expect your doctor or clinic to provide a translator for you, unless you have arranged this well ahead of time. In the United States, most people can expect someone in a large urban hospital or clinic to speak Spanish, but any other unofficial language will likely not be spoken. (In Canada, unless you live in Quebec, don't expect anyone to speak French; it's easier to find Mandarin-speaking and Punjabi-speaking people.)

• Get informed. Get a book (clearly you have, if you're reading this!), or go online to one of the websites we recommend at the back of this book. If you have no computer, public libraries have computers with Internet access.

• Keep a thyroid health folder of all information pertaining to your thyroid treatment. Request a copy of your complete medical records, and after each doctor visit, request a copy of all thyroid function lab test results, correspondence, and so forth. Keep an updated list of all your medications, including the brand names and dosage strength.

• Get it in writing or on tape. If your treatment plan is complex (as in Graves' disease or thyroid cancer, for example), bring a tape recorder to your doctor visits and ask permission to tape some of the information so you can retain it better.

• Get an e-mail address and ask your doctor if you can send questions from time to time (try not to take advantage). Some health insurance providers now offer reimbursement to doctors for e-mail time spent with patients. This has been shown to create better access for patients and cut down on travel time to doctors. Many specialists routinely manage some of their thyroid patients long-distance with e-mail access.

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