Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know by Mary J. Shomon

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Autoimmune disease is mysterious, difficult to diagnosis, and all too common. In fact, an estimated 50 million Americans suffer from its symptoms, which include fatigue, joint pains, depression, memory loss, numbness, and heart palpitations. In Living Well with Autoimmune Disease, Mary Shomon shares what she has learned while coping with her own condition.

From the Publisher

complete guide to understanding the mysterious and often difficult-to-pinpoint disorders of the immune system—and finding the keys to diagnosis, treatment, and recovery.

An estimated fifty million people suffer from symptoms including fatigue, joint pains, depression, or heart palpitations — signs that the immune system has turned on itself, causing conditions such as thyroid disease, hepatitis, or multiple sclerosis. And while doctors may prescribe treatments to relieve these surface ailments, when asked about the life-long health implications of an autoimmune condition, they often just shrug their shoulders. Yet much like cancer, having one autoimmune disease puts you at high risk for developing another, and understanding the underlying immune process can reverse a patients approach to a dysfunction—for the author, it changed the way she ate, the vitamins and supplements she took, and the types of doctors she visited. Living Well with Autoimmune Disease is the first book that goes beyond the conventional treatments by showing you how to work on your underlying autoimmune dysfunction with natural and alternative therapies.

Publishers Weekly

It took physicians two years after the author complained of weight gain, depression and fatigue to diagnose her with the autoimmune disease Hashimoto's thyroiditis. Autoimmune disease, which includes such conditions as multiple sclerosis, lupus, rheumatoid arthritis and chronic fatigue syndrome, are estimated to afflict at least 8.5 million Americans. According to Shomon (Living Well with Hypothyroidism), because of the difficulty of diagnosis and tendency of some physicians to prescribe treatments that may have serious side effects, those with autoimmune illnesses are being shortchanged by the medical establishment. Since those who suffer from one are more vulnerable to other autoimmune disorders (not to mention that they may have a genetic predisposition toward a disorder), this informative self-help manual is badly needed. Drawing on extensive research, as well as doctor-patient anecdotes, Shomon's guide is designed to empower patients to participate in their own care. In addition to a detailed discussion of every type of autoimmune disease, the author provides advice on how to choose an appropriate medical team that will work to integrate conventional and alternative therapies. Based partly on her own experience, Shomon advocates an integrative approach to treatment that may include meditation, herbs, exercise and dietary changes along with antibiotics and hormones that together will minimize symptoms and maximize health. (Oct.) Copyright 2002 Cahners Business Information.

Library Journal

It takes a unique combination of knowledge and skill to present complex medical information accurately and make it understandable to the average nontechnical reader; unfortunately, this book does not meet that expectation. Shomon, who wrote Living Well with Hypothyroidism after her own diagnosis, is a self-described patient advocate and editor in chief of several newsletters for patients. Nowhere in the book does it indicate that she has a professional clinical background, yet she feels competent to interpret autoimmune diseases, which are highly complex and comprise between 50 and 100 different illnesses, such as type 1 diabetes, Crohn's disease, and lupus. Many of these illnesses defy cure, and clinicians and patients alike hope to be able to manage symptoms and minimize organ or joint destruction. Yet Shomon claims that her guide will go beyond symptom management to "discover cutting-edge approaches that can actually reduce and even reverse the autoimmune response [and] even cure autoimmune conditions entirely." Relying on interviews with patients and various practitioners, her own experience, and a mix of research sources, she discusses conventional and alternative approaches to more than 25 autoimmune conditions. Unfortunately, many of her references are not drawn from peer-reviewed resources but come from newswire services, electronic journals, newsletters, web sites, or press releases. Throughout, Shomon frequently interchanges IBD (inflammatory bowel disease) and IBS (irritable bowel syndrome), though the treatment and course of these two entities are completely different. And there are other such errors. Shomon has a deep personal interest in the topic, but is she the best person to interpret and present this highly important and complex information. This reviewer thinks not. Not recommended; a better choice would be Simone Ravicz's Thriving with Your Autoimmune Disorder.DLisa McCormick, Jewish Hosp. Health Sciences Lib., Cincinnati Copyright 2002 Cahners Business Information.

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Chapter One

Introduction

When I was first diagnosed with hypothyroidism, I didn't have any idea what or where the thyroid was, or what it actually did. My doctor phoned to let me know that my thyroid was a little underactive, called in a prescription to the pharmacy, and that was the extent of the diagnosis and treatment. Months after I began thyroid hormone replacement, I was still struggling with continuing symptoms. My hair was falling out and clogging the drain. I was waking up each morning with sore and achy joints and muscles. Just a few hours of typing on the computer would set off a major attack of carpal tunnel syndrome in my forearms and wrists. My eyes became scratchy and my vision blurry due to dryness. My hands and feet frequently tingled and went numb.

I decided to find out more about my condition and read a book from the 1970s explaining that the main cause of hypothyroidism was actually an autoimmune disease called Hashimoto's thyroiditis. The book offered little insight into the causes and treatment for this condition. All it suggested was that having one autoimmune disease could increase the risk of developing other autoimmune conditions. The prospect of having one poorly understood condition was frightening and was made far worse by the idea that I was also at higher risk for lupus, multiple sclerosis, diabetes, or worse.

I asked my doctor to refer me to an endocrinologist -- a specialist in endocrine diseases. When I consulted with the endocrinologist, I asked her if I could be tested for Hashimoto's thyroiditis. "We could do that," she responded, "but what's the point of spending the money? Because the factthat your hypothyroidism may be caused by an autoimmune disease is not going to change anything." But the truth is, my hypothyroidism was ultimately caused by an autoimmune disease -- Hashimoto's thyroiditis. And that does change everything.

It changes the way I should eat. The symptoms I should monitor more closely. The vitamins, minerals, herbs, and supplements I should take. The types of doctors I should visit. The ways I should manage stress. Even the water I should drink. And it changes the way I should feed my young daughter and care for her health now to protect her in the future.

That's why I wrote Living Well with Autoimmune Disease. Because autoimmune disease does matter ... and because we need to know more.

Variations of my story are repeated every day when a patient with autoimmune thyroid disease wonders, as I did, if the tingling and numbness are actually signs of impending multiple sclerosis. Or when the woman with lupus asks how she got the condition and is offered nothing more than a shrug of the shoulders from a doctor. Or when a person with Sjögren's syndrome worries that the dry eyes and mouth are a harbinger of other autoimmune diseases to come but is told there's nothing that can be done to prevent them, so why worry. Or when a pregnant woman wonders whether her baby will be at greater risk of developing an autoimmune disease someday.

But for most autoimmune diseases, the best that medicine can do is keep some of the symptoms at bay. The root cause of the condition, or any potential to cure the autoimmune disease, is rarely -- if at all -- addressed. And that means you may ultimately feel afraid.

Afraid because once the immune system has turned on you, you may start on a seemingly downward health spiral characterized by development of other autoimmune conditions.

Afraid because multiple autoimmune conditions are frequently accompanied by dramatically worsening allergies, heightened chemical sensitivities, hormonal imbalances, and a host of other debilitating and life-changing symptoms.

Afraid because you've perhaps only just learned to deal with your diagnosed condition and now you suspect that every new symptom, every new ache or pain, might signal the onset of another new and insidious autoimmune disease.

Afraid because, for the most part, doctors throw up their hands when you ask, "What can I do about my autoimmune condition?" And afraid because your doctors just shake their heads, perplexed, when you ask, "How can I avoid getting more autoimmune-related diseases?" And afraid because most doctors don't have an answer to the critical question: "Is there anything I can do to help prevent my children from developing autoimmune diseases?"

Afraid because, over time, chronic malfunctioning of the immune system can ultimately lead to various cancers.

Afraid that there's no way to recapture your health, no way to slow or halt the inexorable march of an immune system gone haywire as it launches each new attack on another part of your body.

Afraid that there are no answers.

But there are answers.

You just aren't likely to hear them from the typical HMO (Health Maintenance Organization) doctor, who may not even recognize or easily diagnose many autoimmune conditions, much less know how to treat them -- particularly given the constraints of the typical HMO-mandated 15-minute-or-less appointment.

And the answers aren't likely to be forthcoming from the average primary care doctor, or GP, or ob-gyn -- the doctors most of us see for our day-to-day medical care. These doctors rush through dozens of patients a day and barely have time to keep up with key developments in the most studied conditions such as heart disease and cancer, much less time to delve into complicated and often misunderstood autoimmune diseases.

And even those doctors who consider themselves experts in treating the most common autoimmune diseases rarely venture into the uncharted territory of actually dealing with the autoimmune process itself. Most are content to focus on treating symptoms. So endocrinologists give insulin for diabetes and thyroid hormone replacement for thyroid disease. Rheumatologists prescribe pain relievers and immunosuppressives for rheumatoid arthritis. Gastroenterologists offer surgeries and drugs for Crohn's disease. But ask these doctors about the autoimmune implications of the conditions and they may draw a blank.