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Review and Information from Mary Shomon

In this interview, Elaine Moore, author of a wonderful new book, Graves' Disease A Practical Guide, shares some thoughts about Graves' disease, and information about this recently published book, which I personally believe should be on the bookshelf of every patient with Graves' or hyperthyroidism, and every practitioner who treats them!

Mary: First, Elaine, many congratulations on the book. I'm very excited to see such a comprehensive, unbiased book on Graves' available to patients, and I've been recommending it to people who write me looking for Graves' disease information. What in particular motivated you to dedicate such tremendous effort to writing Graves' Disease A Practical Guide?

Elaine: I truly regret not being adequately informed of treatment options when I was diagnosed with Graves' disease (GD). Not understanding the autoimmune nature of this disorder, I rushed into having aggressive treatment despite having few symptoms. When my doctor said radioiodine was my only option, I believed him. Now I'm permanently hypothyroid and have more problems than I ever had from being hyperthyroid. It's important for patients to realize that the immune system, not the thyroid, is at fault in GD. Patients need to realize all of their treatment options, including alternative medicine. They also need to understand that GD runs its own course and spontaneously resolves in up to 25% of patients each year. Although everyone needs to be monitored, not everyone requires aggressive treatments. Too many people are being pushed into having radioiodine ablation and destroying their thyroids, and they're often erroneously told that radioiodine therapy is without risk. My reason for writing this book was to let people know that destroying one's thyroid has serious consequences. It's not a matter to be taken lightly.

My second goal is addressing the long-term consequences of Graves' disease, particulary the concerns of people who have never addressed the underlying immune disturbance responsible for Graves' disease. My book is for all GD patients, the newly diagnosed as well as those who were treated for Graves' disease fifty years ago.

Mary: What are some unique things that you feel are covered in your book that would be of particular interest to Graves' disease patients, things they wouldn't be likely to find in other books?

Elaine: I go into great detail explaining how and why Graves' disease develops. Specifically, I describe how GD develops in individuals with a certain combination of genes who are exposed to certain environmental triggers, including stress. With this knowledge, patients can see how the thyroid gland in GD is the victim, not the cause in autoimmune thyroid

In describing conventional and alternative treatment options I explain how each therapy affects the underlying immune system defect and how this influences the long-term consequences of treatment. I also list the pros and cons of individual therapies and explain why no one treatment works best for all patients. My primary focus is on the autoimmune nature of GD. if the underlying immune system defect isn't addressed, patients generally go on to develop another autoimmune disease such as fibromyalgia or celiac disease.

Although I've included the results of several long-term treatment outcome also included an anecdotal chapter in which patients treated with the various treatment options describe their experiences. I've also included chapters describing the special considerations in pregnancy and in children and the progressive hypothyroidism that can occur . Because of my extensive background in laboratory medicine, I'm well versed in the pitfalls of laboratory testing. Many people on anti-thyroid drugs (ATDs) are abruptly taken off these drugs too soon. When they have a relapse, they're told they must have radioiodine ablation. This could be avoided if more doctors ordered the appropriate thyroid antibody tests.

Other patients on ATD are sometimes kept severely hypothyroid because reliance on certain thyroid function laboratory tests. I know you've expressed concerns about this reliance in your book too. Also, many people with hyperthyroidism are diagnosed with GD when they actually have other thyroid disorders, but the wrong diagnostic tests are relied on. To help patients take charge, I've included an extensive chapter on laboratory testing and test interferences and a chapter on autoantibodies.

Mary: After reviewing your book, I find it's an extremely well-- written, very thorough overview of the variety of approaches, both conventional and alternative, that could be considered for Graves' disease. In fact, my feeling is that this should be THE book a Graves' disease patient first picks up, in order to better understand the condition. But I understand that some of the conventional thyroid authorities are coming out in opposition to your book -- an experience I can well relate to with my own book! Any idea why?

Elaine: I believe it has to do with my recommendation to research treatment options instead of rushing into having radioiodine. 50 years ago in the United States, scientists and physicians debated whether radioiodine was a safe therapy. Initially, after reviewing the cancer mortality rates for patients with enlarged thymus glands treated with radioiodine, a number of scientists decided that radioiodine was unsafe. Unfortunately, however, those in favor of radioiodine kept the debate going until they got their way.

Consequently, radioiodine is now the major treatment for hyperthyroidism in the United States, but not in Europe or Japan. In most European countries, radioiodine is never administered to women younger than 40. In Europe and Japan, anti-thyroid drugs are the treatment of choice. The former head of the Atomic Energy Commission has dedicated his life to proving how unsafe radioiodine is.

Relying on studies of survivors of Hiroshima and the Chernobyl disaster, in the last decade researchers have learned a great deal about the effects of radioiodine. Consequently, a number of physicians in the United States have quit recommending radioiodine ablation. But radioiodine is the cheapest therapy and medicine today is driven by cost. Many doctors, especially those in HMO's and those who trained before 1990, insist that radioiodine is safe. One of my goals in writing this book is to present studies showing both point of views.

Also, even though it's been long known that a number of people with Graves' disease achieve spontaneous remission without treatment, some doctors think that hypothyroidism is preferable to hyperthyoidism. People like me who have mild symptoms are having their thyroid glands destroyed although wiser doctors monitor symptoms and determine the disease's natural progression before even suggesting treatment.

And even though the German Commission E has described certain herbs as both safe and efficacious for the treatment of hyperthyroidism, few doctors in the United States are familiar with herbal therapy. They object to trying something new although they don't think twice about destroying the thyroid of someone with subclinical or mild symptoms. The moderators of one popular thyroid board do a great disservice to Graves' disease patients in that they try to scare people into having aggressive treatment by suggesting that the rare condition of thyroid storm is a common event, and they refuse to publish reports of spontaneous remission. They ban reports, even published studies, listing the benefits of alternative medicine and pull posts of patients who object to the use of radioiodine. There are several support groups who receive funding from drug companies and consequently perpetuate the notion that hypothyroidism is a simple easily treated condition.

Fortunately, Mary, neither of us have to worry about offending sponsors. We're able to present factual, well-researched information objectively. Just as you did in Living Well with Hypothyroidism, in my book, I've included numerous citations so that anyone who objects to certain facts can go right to the source and learn that much has changed since the early 1950's when radioiodine first came into vogue. Mary, I know you've helped millions of people with hypothyroidism. You've taught people the importance of being involved in their own healing plans. With my book, I hope to do the same for Graves' disease patients.

Mary: I know many Graves' disease patients who are interested in finding out more about Block and Replace Therapy, as well as long- term antithyroid drug treatment, as alternatives to Radioactive Iodine, which seems to be the only option many U.S. doctors understand or are willing to offer. Can you tell us a little bit about your coverage of these topics in the book?

Elaine: Chapter 8, which discusses conventional treatment options, describes the advantages of block and replace therapy. In this chapter, I included recommendations from some of the top endocrinologists at Harvard University who state that all patients with GD should undergo a minimum 18 month trial of ATDs before even considering aggressive treatment. By 18 months most patients on ATDs will have achieved remission. Those who haven't will by then have a better idea of their disease course and can decide if they want to pursue ATD therapy or try another approach. Some people have symptoms that wax and wane causing them to have natural periods of remission that alternate with variable symptoms. These are factors that must be taken into consideration. One's unique disease course and personal health status are important factors in choosing therapy. While all patients need to have their symptoms monitored by a conventional or alternative medicine practitioner, all patients do not need the same standard treatment.

Mary: Can you give us a bit of a preview of some of the alternative approaches you discuss?

Elaine: This is probably my favorite chapter because in researching it, I met lots of people, including one physician, who achieved remission using alternative medicine. Topics discussed include homeopathy, herbal medicine, energy healing, stress reduction techniques, dietary changes, strong solution of saturated iodine (SSKI or Lugol's solution), craniosacral therapy, Ayurveda, traditional Chinese medicine, Kampo, acupuncture, yoga and tai chi. Graves' disease is associated with many nutrient deficiencies caused by an increased metabolism. Many symptoms in GD are related to these deficiencies. Again, relying on sources from the medical literature, I explain how correcting these deficiencies may help reduce certain symptoms.

Mary: What would you like Graves' disease patients to take away from reading your book?

Elaine: I'd like them to understand that everyone with Graves' disease is a unique individual. Predominant symptoms and their severity vary from person to person. We all have unique genes and clusters of autoantibodies that determine the severity of our symptoms and how our disease will progress. Because of all these variables, we all respond to treatment differently. Some people achieve remission in weeks while for others, it takes years.

Many people who ended up achieving remission with anti-thyroid drugs reported that their doctors were amazed and commented that they'd never seen such a favorable response with anti-thyroid drugs (some doctors admitted they'd never tried using ATDs before). I'd like it if more patients helped their doctors understand that remission is an attainable goal. I've also met hundreds of people who regret having had their thyroid glands destroyed and who are now suffering from the consequences. Some people say I'm on a mission to save thyroid glands. It's true. I'd like more patients to survive Grave's disease with their thyroid intact. Destroying any organ should not be taken lightly.

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