Some years ago, the author visited a thyroid clinic in England where a middle-aged man with Graves' disease was being seen. The diagnosis had been confirmed by blood tests and a thyroid scan, and the patient's physician had decided to treat him with the antithyroid drug carbimazole.

The patient came into the consultant's room and sat down. As the consultant handed him a prescription, he said simply, “. . . our tests confirm the fact that your thyroid is overactive and I want you to take this medicine.” The patient asked, “Is the medicine safe to take?” “If it wasn't, I wouldn't give it to you” was the reply. The patient's next question was, “What is it going to do for me?” “It's going to help you” replied the physician. “Will it hurt me?” asked the patient. “If I thought it would hurt you, I wouldn't give it to you” was the reply. No mention was made of the risk for rash, liver dysfunction, or agranulocytosis.

At one time, such an exchange would not have been uncommon or out of place. Many of the author's teachers at medical school emphasized the importance of not frightening a patient unduly by elaborating potential complications of treatment. However, times have changed. Patients are more educated and are aware of their right to know the potential risks and benefits of any form of treatment; they demand an understanding of the condition for which they are treated. Moreover, they are more informed of their legal rights and most expect to have their “informed consent” obtained for any treatment.

At the same time, physicians are increasingly subject to financial constraints that can make office time a precious commodity. Many physicians might wish to discuss the pathogenesis, evolution, and symptoms of a condition and its possible treatments and the risks and benefits involved. However, this is rarely possible; and physicians are increasingly turning to other forms of education to ensure that their patients are well-informed and, appropriately, participants in the entire medical process.

Even when the physician decides to educate a patient about a condition as complex as Graves' disease, the result is often incomplete. The patient may lack the education to understand the information offered. A well-meaning physician may forget some of the potential complications. A physician who knows that radioiodine is the best treatment for a particular patient inadvertently may emphasize the complications of antithyroid drugs and surgery and minimize a discussion of the potential risks of radioiodine. In fact, many patients have real concerns about radioiodine treatment. These may include fears that any radiation must be inherently dangerous, a hazard to the rest of the family, and a risk to the health and well-being of future children.

In an effort to be thorough and helpful to their patients, some physicians create office brochures which a patient may take home and read at their leisure. Although the idea is a good one, some of these materials may not be regularly updated, and their value depends on the practitioner's knowledge and ability to write clearly at a patient's level.

In 1982 in collaboration with Drs David Cooper and E. Chester Ridgway, the author and colleagues decided to write a book for patients with thyroid disease. The process was fascinating and taught the author a great deal about communication with patients. Consultation with the publisher taught the authors that such writing must be simple, clear, and personal. Cartoons were better than actual photographs of patients. The latter might be more accurate, but the appearance of an ill or disfigured patient often frightens a new one.

In the authors' first book, it was suggested that patients with particular concerns should respond in writing. It was thought that the occasional letters would help the authors improve the manuscript for a second edition. The flood of response that followed was surprising. Hundreds of letters have been answered, and a great deal has been learned about patient needs in the process. The questions that patients ask are often very personal and are best answered by a knowledgeable and caring person rather than by a brochure.

The next logical step was to create an organization that could provide such services, because the authors obviously could not do it alone. Formation of the Thyroid Foundation of America was the result. A telephone inquiry to this organization is answered by a person who can sense the anxiety of the patient and who can provide not only information and reassurance but also the name of another physician if the patient desires a second opinion.

The same scenario has been repeated elsewhere in the United States and in ten other countries throughout the world, the only difference is that it is usually patients rather than physicians who realize the need for patient communication, understanding, and support. Many caring and concerned patients with thyroid disease want to help other patients, especially if they could not find such help when they were sick. Each of the patient support organizations that have been developed are slightly different, for they originate from the personality, the experience, and the perceived needs of different individuals and groups.

During the past 2 years, most of the thyroid foundations and associations have come together to create an International Thyroid Federation. This organization meets once a year to share experiences and ideas to help others who want to create similar organizations in other countries and to develop programs that can benefit patients throughout the world.