Living Well With Hypothyroidism: The Bestselling Book Offering Help and Hope to People with an Underactive Thyroid, Solutions for Weight, Fatigue, Depression, Hair Loss, Fertility, Pregnancy, and More, from Patient Advocate and Best-Selling Author Mary Shomon
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Living Well With Hypothyroidism:
What Your Doctor Doesn't Tell You...That You Need to Know

Living Well With Hypothyroidism: Second Edition / 2005
  • Overview
  • Table of Contents
  • Key Thyroid Experts Featured
  • Rave Reviews!
  • Book Introduction: First Edition
  • Introduction to 2005 2nd Edition


    Author: Mary J. Shomon
    ISBN number: 0060740957
    List price: $14.95(US dollars)
    Pages: 624 pages
    Published by: HarperCollins/HarperResource

    Available: Bookstores everywhere
    Online : Amazon.com, $10.17 plus shipping, Barnes & Noble, Borders and other outlets

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    Phone Orders: Call Call Politics and Prose toll-free at 1-800-722-0790 (202-364-1919)




    "...[a] first-rate book..."
    -- Los Angeles Times

    "...an extensively researched guide...[and a] down-to-earth, patient-centered approach..."
    --Amazon.com

    "If I could recommend only one book on thyroid problems for my patients, this would be it."
    -- Elizabeth Lee Vliet, M.D.

    "I can't put it down. You are such a wonderful resource on the subject, and I find myself on every page..."
    -- Phyllis

    "THANK YOU!!!! Can't believe I have found answers to my unending symptoms..."
    -- Ellen

    "...You've written about a complex topic in a way that is easy to understand!"
    -- Sherry

    "I wish that every doctor that treats thyroid patients could be made to read this!"
    -- Georgie

    "Thank you for ALL the information contained in your book and for the reward of knowing that I am not alone in this fight."
    --Jeannie

  • Best-seller since 2000!

  • More than 25 printings, 150,000+ copies in print!

  • Amazon.com Health Bestseller since 2000!

  • Newly revised and updated second edition!

  • The only patient-oriented book on hypothyroidism that presents both conventional and alternative options

  • An unbiased look at the difficulties in getting properly diagnosed and treated, from a patient who's been there

  • The author is an independent patient advocate, and not a shill for the drug companies, so the book is not a glorified sales pitch for Synthroid, as other books on the topic can be

  • Features information from the nation's leading experts on diagnosing and treating hypothyroidism, based on patient results, NOT lab values

    BUY IT NOW
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    OVERVIEW

    Are you exhausted all the time? Gaining weight for no reason, or finding it impossible to lose, even with diet and exercise? Feeling depressed, moody and forgetful?

    You could be one of as many as 59 million Americans suffering from the mysterious and frequently undiagnosed symptoms of hypothyroidism – an underactive thyroid. Hypothyroidism affects more people in the United States than diabetes, yet is far less recognized or understood.

    Endured by weary patients and ignored by doctors, the common warning signs of hypothyroidism – weight gain, moodiness, fatigue, hair loss, fertility or menstrual problems, muscle aches/pains -- are all too often attributed to stress, depression, age, lifestyle, “female problems,” or simply dismissed as “all in the patient’s head.” Even when diagnosed, hypothyroidism is frequently treated improperly, preventing millions from feeling and living well.

    Patient advocate Mary Shomon has been there -- as a frustrated patient with thyroid disease, she took matters into her own hands and began researching and writing about thyroid problems. The result, the 2005 Revised Edition of her best-selling book, Living Well with Hypothyroidism: What Your Doctor Doesn’t Tell You…That You Need to Know (HarperResource; ISBN: 0060740957) offers both information and motivation to help readers recognize the symptoms, get diagnosed, obtain the right treatments – both conventional and alternative -- and understand how to truly live well with hypothyroidism.

    “Hypothyroidism is not a one-size-fits-all, easy-to-treat nuisance,” says Shomon. “If not recognized or properly treated, an underactive thyroid can mean a lifetime of chronic illness and debilitating symptoms, plus a greater risk of heart disease, stroke, chronic obesity, infertility, and other serious health problems.”

    This 2005 release is a revised and updated edition of the first edition of Shomon‘s national bestseller, which was published in 2000, and went to more than 20 printings, and has had a near-permanent presence on various Amazon.com bestseller lists. As in the first edition, Shomon provides detailed information on the warning signs, symptoms, and risk factors for hypothyroidism, along with a checklist patients can bring to their doctor. She reviews and explains a wide range of treatments -- from conventional to integrative to holistic – and not only shares her own struggles, but the experiences and advice from thousands of patients and doctors she’s encountered. The new edition of Living Well With Hypothyroidism answers questions that often go unanswered, and features expanded coverage many upgrades, revisions and improvements, including:

    • Coverage of the major controversies over the latest testing, diagnosis and treatment methods, including the new TSH guidelines, other blood tests besides TSH, and alternative tests for thyroid disease, including saliva and urine
    • Information about thyroid drugs that the drug companies don’t want patients to know
    • An expanded 19-Page Risks/Symptoms Checklist
    • A special updated section on the diagnosis challenges and controversies, including finding and communicating with the right doctor, getting past refusals to test your thyroid, misdiagnosis, overreliance on the TSH test, the changing “normal” range, subclinical hypothyroidism, and more
    • A new section on treatment challenges and controversies, fully exploring the issue of optimal TSH levels, T3 treatment, T4/T3 balance, hormone resistance, natural thyroid, and adrenal problems.
    • Details on other current controversies, such as iodine, seaweed, soy, coconut oil, fluoride, perchlorate exposure, environmental estrogens, mercury, potassium iodide, and more.
    • A detailed chapter that introduces readers to the success factors in losing weight with hypothyroidism
    • Expanded sections on alternative, complementary, holistic and integrative approaches to hypothyroidism
    • A new chapter dedicated to “Vitamins, Herbs and Supplements for Hypothyroidism”
    • A detailed new chapter on “Infertility, Pregnancy and Breastfeeding,” including details on how to optimize hypothyroidism treatment to get pregnant, stay pregnant, ensure a healthy baby, and be able to breastfeed that baby after delivery
    • A new chapter on “Fatigue” including various solutions
    • Hypothyroidism during and after menopause and in seniors
    • Advice on treating the hypothyroid child
    • A greatly updated and expanded resources section, featuring books, websites, experts and other resources to help
    For the millions of Americans who wake up to face hypothyroidism each day this book is essential, and the millions more who suffer symptoms but haven’t been diagnosed, Living Well with Hypothyroidism makes it possible to live well again.


    TABLE OF CONTENTS

    CONTENTS

    INTRODUCTION
    INTRODUCTION TO 2ND EDITION

    PART I: SIGNS, SYMPTOMS, DIAGNOSIS, AND TREATMENT
    CHAPTER 1: What is Hypothyroidism?
    CHAPTER 2: Are You at Risk for Hypothyroidism?
    CHAPTER 3: What Are the Symptoms and Signs of Hypothyroidism?
    CHAPTER 4: Hypothyroidism Diagnosis and Symptoms Checklist

    PART II: CONVENTIONAL AND ALTERNATIVE TREATMENT OPTIONS
    CHAPTER 5: Thyroid Hormone Replacement
    CHAPTER 6: Alternative Medicine for Thyroid Disease
    CHAPTER 7: Alternatives: Vitamins, Herbs and Supplements
    CHAPTER 8: Alternatives: Mind and Body Approaches

    PART III: CHALLENGES AND CONTROVERSIES
    CHAPTER 9: Diagnosis Challenges and Controversies
    CHAPTER 10: Treatment Challenges and Controversies
    CHAPTER 11: Other Controversies

    PART IV: SPECIAL CONCERNS OF HYPOTHYROIDISM
    CHAPTER 12: Losing Weight Despite Hypothyroidism
    CHAPTER 13: Depression and Hypothyroidism
    CHAPTER 14: Fatigue and Other Continuing Concerns
    CHAPTER 15: Infertility, Pregnancy, and Breastfeeding
    CHAPTER 16: Hypothyroidism in Infants and Children
    CHAPTER 17: Hypothyroidism After Thyroid Cancer

    PART V: LIVING WELL NOW AND IN THE FUTURE
    CHAPTER 18: Living Well With Hypothyroidism: Creating Your Plan
    CHAPTER 19: Looking Toward the Future

    APPENDICES
    Resources
    Glossary
    References


    IT'S LIKE MEETING THE NATION'S LEADING EXPERTS!!

    Many renowned thyroid experts and practitioners -- the nation’s true pioneers in treating people with hypothyroidism – have shared their thoughts, input and advice in the new 2005 edition of Living Well With Hypothyroidism. It’s like attending a conference with the nation’s leading hypothyroidism, metabolism and autoimmune disease experts! Some of these experts include:

    • Kenneth R. Blanchard, PhD., M.D.
    • David Brownstein, M.D.
    • Hyla Cass, M.D.
    • Manelle Fernando, M.D.
    • Theodore Friedman, M.D.
    • Dr. Dale Guyer, M.D.
    • Kent Holtorf, M.D.
    • Drs. John and Gina Honeyman-Lowe
    • Donna Hurlock, M.D.
    • Joseph J. Lamb, M.D.
    • Stephen Langer, M.D.
    • Kate Lemmerman, M.D.
    • Ron Manzanero, M.D.
    • Michael McNett, M.D.
    • Joseph Mercola, DO
    • Donald Michael, M.D., PC
    • Richard Podell, M,D., MPH
    • Bruce Rind, M.D.
    • Carol Roberts, M.D.
    • Glenn Rothfeld, M.D.
    • Richard Shames, M.D. and Karilee Shames, PhD., RN
    • Dr Brian Sheen
    • Sanford Siegal, D.O.
    • Robert G. Saieg, M.D.
    • Sherrill Sellman, ND
    • Jacob E Teitelbaum M.D.
    • Kenneth N. Woliner, M.D., ABFP

    RAVE REVIEWS FOR LIVING WELL WITH HYPOTHYROIDISM

    Los Angeles Times, Health Section, March 27, 2000, by Shari Roan
    "Challenging Doctors and Patients Alike... -- Hypothyroidism is a common, very treatable disorder that is also often poorly managed by doctors. In this first-rate book by Mary Shomon, a thyroid patient and professional writer, the disorder, its myths, and medicine's successes and failures at dealing with it are thoroughly examined. This is not a book that rehashes old facts on thyroid disease. Shomon instead challenges patients and their doctors to look deeper and try harder to resolve the complicated symptoms of hypothyroidism. For example, she points out that a Thyroid Foundation survey showed that two-thirds of patients still suffer symptoms after undergoing what doctors consider sufficient treatment. In a fascinating chapter, Shomon, who also has a Web site (http://thyroid.about.com and an online newsletter about the disease, explores recent evidence that the addition of the thyroid hormone T3 to the standard T4 (levothyroxine) may help some people feel better. In addition, the section on babies born with hypothyroidism, although brief, has the best advice on how to give medication to an infant that I've seen. As Shomon writes: 'For years, thyroid problems have been downplayed, misunderstood and portrayed as unimportant.' With her advocacy, perhaps no more."
    ~ Shari Roan, Los Angeles Times

    Amazon.com
    "As many as one in eight women have a thyroid condition. In Living Well with Hypothyroidism, Mary Shomon outlines the most common of these--too little thyroid hormones in the body. Weight gain, depression, fatigue, and what patients call "brain fog, Brillo hair, and prune skin" result. Because the symptoms of hypothyroidism mimic so many other conditions--chronic fatigue, PMS, clinical depression--it can be very tricky to diagnose, especially since patients with HMOs may not get the thorough testing they need. Shomon knows of what she speaks: she's a health writer and thyroid patient herself. She also manages a thyroid Web site and writes a newsletter on hypothyroidism. In Living Well, she offers an extensively researched guide to this complex condition. She covers conventional, alternative, and late-breaking approaches to treatment--such as challenging the gold standard of Synthroid as the thyroid replacement therapy of choice. (Synthroid replaces T4, the less active of the two thyroid hormones, and Shomon features new research on adding T3--the more potent thyroid hormone--to treatment.) With her down-to-earth, patient-centered approach, Shomon explains everything from how to choose a thyroid specialist to how calcium, antidepressants, and a high-fiber diet affect thyroid hormone absorption. The book includes a chapter on depression, which is a typical misdiagnosis of hypothyroidism--as well as a symptom that often persists even after treatment. She also covers infertility (women who are hypothyroid don't ovulate as regularly and miscarry more frequently) and thyroid cancer, one of the less common causes of hypothyroidism. She explains how to spot hypothyroidism in kids, and ends with a glossary, international resources, and journal references. Shomon creates a sense of community by excerpting e-mails from her vast network of patients--voices that bring a sense of humor so often missing from health books..." ~ Rebecca Taylor, Amazon.com

    “Mary Shomon is the harbinger of the latest scientifically-sound information on hypothyroidism. With keen intellect, loyalty to truth, and plain language, she sweeps away the medical dogma that bars millions of patients from rational thyroid hormone therapies. In this book, she describes practical thyroid therapies that can improve patients' health and extend their lives. The book is vital for hypothyroid patients who want to get well, and for physicians who want to help them do so.”
    ~ Dr. John Lowe, author of The Metabolic Treatment of Fibromyalgia and founder of the Fibromyalgia Research Foundation

    “Shomon's book is an enlightened godsend to hypothyroidism sufferers, providing a wealth of cutting edge medical information and alternative approaches for surviving ...and thriving ...with hypothyroidism. Mary has debunked longstanding "myths" and misinformation about thyroid diagnosis and treatment options that have come from both alternative and conventional thyroid specialists. If I could recommend only one book on thyroid problems for my patients, this would be it.”
    ~ Elizabeth Lee Vliet, M.D. author of Screaming to Be Heard: Hormonal Connections Women Suspect...And Doctors Ignore, and It's My Ovaries, Stupid!

    Selected Reader Comments

    "I can't put it down. You are such a wonderful resource on the subject, and I find myself on every page..."
    -- Phyllis

    "Where would I be without your help? I don't even want to imagine it. I feel morally obligated not only to thank you with all my heart, but to tell as many people as I can about you and your books, so they too can be helped. Darn it, I just can't say the words thank you enough. If you would be in front of me right now, I would hug you so hard you would think I am insane. I'm sure you have a million other things to do so I'll just say this a few more times... THANK YOU WITH ALL MY HEART FOR TAKING THE TIME AND ENERGY TO SHARE ALL THE INFORMATION YOU WORKED SO HARD TO GET, THANK YOU, THANK YOU, THANK YOU."
    -- Christine

    "THANK YOU!!!! Can't believe I have found answers to my unending symptoms..."
    -- Ellen

    "...You've written about a complex topic in a way that is easy to understand!"
    -- Sherry

    "I wish that every doctor that treats thyroid patients could be made to read this!"
    -- Georgie

    "Thank you for ALL the information contained in your book and for the reward of knowing that I am not alone in this fight."
    -- Jeannie

    "You have written in such a way that is informative but not attacking the physicians but yet letting them know as we already know that there is more to handling hypothyroidism than just numbers. You are so right when you tell us that it is up to us to educate our family, friends and medical establishment. Your book gives the needed strength and courage. A TERRIFIC BOOK!!!!!!!"
    -- Patty

    "I could go on and on about how fantastic and how needed and how appreciated your efforts are but suffice it to say you have made a huge difference in my life and I try to let people know about your website and book every chance I get."
    -- Mary

    "The Resources section is of enormous help....want you to know how very much I appreciate your taking all the time and effort to put forth this book and also the fact that it is inexpensive enough for anyone to afford."
    -- Joyce

    "I purchased your book online and just received it yesterday-I CAN'T put it down-It is so helpful to know I am not the only one out there struggling with this-Your book is GREAT!!!!!! I am going to try and make my husband read it because he thinks it's all in my head. Your book is WONDERFUL!!!!!!!!!"
    -- Stephanie

    "You have given me the information and the courage to get treatment (that I have long argued that I needed), ending some 20 years off/on treatment for depression. After only one week of treatment, I feel my skin coming back to normal, muscle pain gone, beginning to think clearly, motivation returning...."
    -- Diane

    "...it is a perfect book for hypo patients AND their families. It is good to read about "real" people by a "real" person with the same problems. Fabulous book!"
    -- Teri

    "Without exaggerating I can say that the information you have provided so diligently and with such care and professionalism has been my lifeline in dealing with my Hashimoto's disease. I just want to say THANK YOU...today for the first time in a few years, my hands and feets aren't cold and I am thinking more clearly and more hopefully...Here's a big hug. Mary, you have done so much to lessen suffering in the world. God bless you."
    -- Cam

    "I have passed your book on to many people, so the good you have done just multiplies daily."
    -- Wendy


    INTRODUCTION TO FIRST EDITION, PUBLISHED IN 2000

    INTRODUCTION

    He who enjoys good health is rich, though he knows it not.
    ITALIAN PROVERB

    Millions of Americans like you wake up each day with hypothyroidism, a condition you don't even know you have. You're fatigued, your hair is falling out, you're gaining weight and depressed. You don't even think to mention your symptoms to the doctor because you assume age, not enough sleep, or too little exercise are to blame. Unfortunately, you don't recognize these problems as common symptoms of hypothyroidism, a condition that affects an estimated 20 million Americans, possibly even more. If you're a woman, you're up against a one-in-eight chance of developing a thyroid disorder during your lifetime. When you're living with undiagnosed hypothyroidism, you aren't living well.

    Those of you who do mention your problems to the doctor may have a different experience. After reciting a list of symptoms right out of a Thyroid 101 textbook, you may be told by your doctor that you are suffering from depression, stress, PMS, menopause, old age, or, simply, that it's probably just "in your head." If you're living with hypothyroidism and you've been misdiagnosed, that's not living well.

    Countless numbers of you are living unknowingly with hypothyroidism after treatments that your doctors already know can cause hypothyroidism. Some doctors actually forget to tell you that after you've had all or part of your thyroid removed due to Graves' disease, hyperthyroidism, nodules, or cancer, you will almost certainly need thyroid hormone replacement. If you've had radioactive iodine treatments or take antithyroid drugs to "kill" your overactive thyroid, your doctor may have forgotten to mention that hypothyroidism is usually the result. Living with hypothyroidism that results from treatment for other thyroid conditions is not living well.

    Some of you suspect—often correctly—that you are hypothyroid, but you cannot get diagnosed. You have a long list of symptoms and a family history of thyroid problems, but you still can't even get a thyroid test. Sometimes your doctor is arrogant, sometimes ignorant; sometimes you come up against a system designed to avoid paying for medical tests. Whatever the reason, doctors repeatedly refuse to test you in the face of symptoms and history. Even if you manage to get tested, you risk being told that you're normal by doctors who believe that thyroid-stimulating hormone (TSH) test numbers don't lie—but patients, symptoms, medical history, and experience do. Your doctors rely on numbers on a page—ignoring common sense, direct examination, and overwhelming symptomatic evidence. When you are living with undiagnosed and untreated hypothyroidism, it's impossible to live well.

    Once you are diagnosed with hypothyroidism, many of you—perhaps even a majority—do not feel well on the standard therapy. One Thyroid Foundation of America study found that up to two-thirds of hypothyroid patients still suffered symptoms—such as muscle pain, lethargy, weight gain, and depression—despite what doctors considered sufficient treatment. A survey I conducted in 2002 of nearly 2,000 patients found that more than half indicated that they are not satisfied with their quality of life after treatment, and still suffered from a variety of debilitating symptoms. If my email inbox is any indication, there are many of you who share these complaints. You're hypothyroid, you don't feel well, and your doctors say, "you're fine, there isn't anything else we can do for you." Insufficient treatment that leaves you symptomatic is definitely not living well.

    Little helpful information is available. Many doctors, most of the other books about thyroid disease, the pharmaceutical company "educational brochures" and awareness programs, the thyroid patient foundations—they've all closed ranks and usually spout a standard party line: "Take your thyroid pill until your thyroid is in normal range, come back every year for a TSH test, and you're fine." The understanding is, you've got the condition, no point worrying how or why you got it, how to keep it from getting worse, or whether or not you actually feel well on the standard treatment. If you now have hair loss, depression, fatigue, weight gain, low libido, high cholesterol, or any of dozens of other unresolved symptoms that drastically affect your quality of life—symptoms you never had before your thyroid went bad—hey, what does that have to do with anything? You're probably lazy, eating too much, stressed out, not getting enough sleep, not getting enough exercise, getting older, have PMS, or are just plain old depressed. Just live with it. Live with your hypothyroidism. This is not living well.

    Then there are those of you with special circumstances of hypothyroidism. If you have a baby born with congenital hypothyroidism or a child or adolescent who has become hypothyroid, you're given a prescription and sent on your way. You need information to ensure that your children thrive despite a disease than can profoundly affect their physical and intellectual development. You may be menopausal, and need to know which thyroid symptoms can’t be so easily written off to your menopausal status. You may be trying to get pregnant, pregnant, just had a baby, or breastfeeding, and facing the onset or worsening of thyroid problems. You desperately need information – information it’s unlikely your doctor will share – to protect your own health and that of your baby, in order to ensure a healthy, normal pregnancy and child. As for thyroid cancer survivors who are hypothyroid due to thyroid cancer surgery, you face the special challenge of periodically going off thyroid hormone completely, allowing yourselves to become extremely hypothyroid, in order to ensure the accuracy of scans to detect cancer recurrence. Doctors provide little or no guidance, expecting that you will just accept living with the hypothyroidism. But there are ways to cope more effectively, to live as well as possible when going hypothyroid prior to a scan. It's a lack of information that prevents you from living well.

    There are those of you who dare to ask questions. "Is there any thyroid hormone replacement besides levothyroxine?" "Is this really the best dose for me?" "What about the other drugs?" "How about alternative medicine?" You might be ignored, laughed at, patronized, or even in some cases fired as a patient. The consensus is that everything to be known is known, and there are no more questions to be asked, especially if a patient is doing the asking. Interestingly, some researchers have found that what have until recently been considered the "standard" treatments may not work as well as so-called "alternative" treatments for many patients. Instead of adopting better treatments, many doctors prefer to stick with what they learned decades ago in med school, or refuse to do anything differently until there are more studies, while patients suffer needlessly. You're expected to live with your hypothyroidism and not ask questions, quietly enduring. Living a lifetime of silence, with your valid questions and health concerns unanswered, is not living well.

    Then, there's the future. What should we know—but don't— about diagnosing and treating hypothyroidism? What research is needed, who is looking at possible means of cure or remission, alternative drugs, and reevaluating optimum thyroid test values? What are some of the promising treatments that have yet to be formally studied? These are questions that need to be answered— and must be investigated—if any of us is going to live well.

    Millions of people in the U.S. know that it's not enough to just live with hypothyroidism. It's time someone speaks up about how to live well with hypothyroidism.

    DO YOU NEED THIS BOOK?

    An estimated 27 million Americans alone have some form of thyroid disease. Almost all forms of thyroid disease lead to a single outcome: the condition of hypothyroidism—insufficiency of thyroid hormone due to an underactive, underfunctioning, nonfunctioning, partially removed, or fully removed thyroid.

    This book is for you if:

    • You strongly suspect you have thyroid disease but are having difficulty getting a diagnosis by conventional means.
    • You aren't sure if your various symptoms point to hypothyroidism, but you need to find out more.
    • You've been diagnosed with hypothyroidism, told to take this pill and come back in a year, and want more information about how to live as well as possible with your hypothyroidism.
    • You have been treated for Graves' disease, hyperthyroidism, nodules, a goiter, Hashimoto's autoimmune thyroid disease, or even thyroid cancer, and are struggling to feel well again.
    • You are receiving what your doctor feels is sufficient treatment for your hypothyroidism, and yet you still don't feel well.
    • You're an open-minded health practitioner looking for innovative ways to understand and help your hypothyroid patients.
    Above all, this book is for you if you want to learn about living well with hypothyroidism from the perspective of empowered patients and caring practitioners.

    ABOUT THIS BOOK

    Living Well with Hypothyroidism is different. This is your book, written by a thyroid patient for other patients who are going through the familiar ups and downs of diagnosis and treatment. Living Well with Hypothyroidism provides the information about hypothyroidism you probably won't find out from your doctor, pharmaceutical companies, patient organizations, or in other books about thyroid disease. I talk honestly, and without allegiance to any pharmaceutical companies or medical organizations, about the risks and symptoms of hypothyroidism, how to truly get a diagnosis, and the many treatments—conventional and alternative—to treat the condition and its unresolved symptoms. Ultimately, the book is about living well with hypothyroidism, having the knowledge, tools, and team of health practitioners who can ensure that you feel the best you possibly can.

    In this book, you'll find out what your doctor won't tell you about risks, diagnosis, drugs, and alternative and conventional things that work—and don't work—to treat hypothyroidism and its symptoms. You'll also hear the voices of patients, real people who have struggled for diagnosis, learned to deal with doctors, tried different medicines, suffered setbacks, and enjoyed successes. Each person quoted in this book was determined to share his or her own story, ideas, humor, sympathy, hope, advice, and pain with you. I know you will recognize your own experiences, fears and emotions, and be touched and moved by the incredibly honest and poignant stories from patients throughout the world. Above all, you'll know you are not alone.

    MY DISCLAIMER

    I hope that what you learn in this book will help you decide what questions to ask, or what kinds of doctors to seek, or what types of therapies you might want to pursue. Although I research this subject every day, I don't try to be my own doctor or health practitioner. I ask questions, seek out caring, informed health care providers, and we work in partnership. I don't try to do it myself. Neither should you. So go find the conventional, holistic, integrative, alternative, complementary, or other practitioners to be your partners in wellness. And don't forget to show them this book.

    MY HYPOTHYROIDISM STORY

    Before I go any further, I think it might be useful to explain how I got interested in hypothyroidism. First, as I mentioned before, I'm not a doctor. I'm not a health professional. I have an international business degree from Georgetown University. I'm a writer. Somehow, along the way, my battle with my own health led me to manage a popular, patient-oriented Web site on thyroid disease and to launch the only monthly report on conventional and alternative thyroid-related health news and treatments. Ultimately, this has turned into a career as a health writer – including books, web sites, newsletters, and magazine articles -- and role as a patient advocate.

    Looking back, I'm fairly sure the onset of my thyroid problem occurred in early 1993, when I was thirty-two. As a teen and through my twenties, I never had a problem with weight gain. I ate what I wanted, and if I gained a few pounds, I lost it without much difficulty. I joke that in the "old days" all I had to do was cut out a package of chips with lunch every couple of days, switch to diet soda for a week or two, and I'd drop five pounds. I didn't exercise. I worked like a crazy person. I ate terribly. I also smoked a pack and a half of cigarettes a day for more than ten years.

    I had about a ten pound weight gain from age thirty to thirty-two, I grew from a size 6/8, to a size 8/10, but didn't worry much about it. Then in the winter of 1993, I published my first book. I was working an intense fulltime job, then coming home and working late into the night on the new book. I had a new boyfriend. It was a period of several months of intense work/book/life excitement and stress, coupled with too little sleep, poor eating habits, and lots of cigarettes and caffeine. I ended up with the worst bronchial infection I'd ever had, which turned into a case of recurrent Epstein-Barr virus (the virus that causes mononucleosis) so debilitating that I couldn't drag myself out of bed, couldn't go to work for a month, and was so foggy and depressed that I couldn't imagine ever feeling well enough to think clearly, much less return to work. I seriously wondered how I would even muster enough coherence to write a simple memo. I didn't have my thyroid tested at the time, but after looking at my symptoms, and talking to many others who describe similar health crises and resulting brain fog and depression, I believe this is when my thyroid problem started.

    A year later—recuperated for the most part but still feeling tired—I started a slow but steady weight gain. I became engaged to my boyfriend in July 1994, and stopped smoking in September of that year. Then the weight gain escalated. I gained 15 pounds between September and my wedding in January 1995, despite an extremely low fat diet, and thirty to forty-five minutes of exercise every night. I was a size 16 on my wedding day.

    Disgusted with the weight gain and feeling increasingly depressed, I started smoking again. No weight lost, none gained, and I was still depressed. At that point, I felt dumpy, overweight, depressed, and then six months later, in July 1995, I started having trouble getting a full breath. The doctor thought I had developed asthma. At that point, I quit smoking—for good—and a few more pounds piled on. A month after I quit, the doctor decided to run some blood tests because I was again complaining that I didn't feel well. The doctor called a few days later and said that I had "low thyroid," and she'd called in a prescription for me. She put me on Thyrolar™ and said to come in about six weeks later for a checkup. I had absolutely no idea what a thyroid was or even where it was located.

    After I was diagnosed, I continued developing all kinds of symptoms that mystified my doctor and me. My eyes were dry and gritty and my menstrual periods became heavier and more frequent. My skin started flaking. I had headaches. I asked if it could be the thyroid problem. My doctor wasn't sure about a direct connection, and sent me for second opinions from an infectious disease specialist, a pulmonary specialist, and an internist. I had an MRI. I had a consultation with an endocrinologist, who acknowledged that some of the symptoms I had probably were due to my thyroid. She ran an antibodies test—at my request—but said it wasn't necessary because it didn't matter why I was hypothyroid. I just was. The test revealed the antibodies that signal Hashimoto's disease. I asked what that meant, and the endocrinologist said it didn't change the treatment, so I didn't have to worry about it.

    The endocrinologist said it was just coincidence that I was a size 8 who could eat anything I wanted before my thyroid went bad, and that less than a year later, I was thirty pounds heavier and barely staving off additional gain on even the most rigorous adherence to Weight Watchers™. She suggested that the other symptoms would eventually relax. The way she put it was:

    In four months or so, you'll look back and realize how much better you feel than you do now. It's going to be relative, and so gradual that it won't be dramatic. One day down the road, you'll just realize you feel better than you do now.
    So I waited my four months. And I still didn't feel quite well. Far better than before, yes, but still not right. So I read, and I read. And then I got a computer, and I surfed the Web. I started to disseminate information I found via the online Usenet newsgroup alt.support.thyroid, and talk with other thyroid patients. And I found out that hair falling out, weird periods, difficulty losing weight, carpal tunnel syndrome, and depression were all utterly "normal" symptoms of hypothyroidism. Maybe some of the information wasn't what I wanted to hear, but I needed to hear it!

    It was a revelation. Knowing what was and wasn't related to my thyroid was far better than not knowing. There were times I felt so sick that I secretly worried I had some incurable disease that the doctors had overlooked. Realizing that symptoms were related to the thyroid also gave me something to shoot for—fixing my thyroid—instead of running around taking pill after pill or visiting high-priced specialists for every supposedly new, but actually thyroid-related, symptom that appeared.

    Later, I assembled a lot of my information and created my thyroid disease Web sites —
    http://thyroid.about.com —at the popular portal site About.com, and http://www.thyroid-info.com, this book’s web site and home for my thyroid newsletters, guides and the latest developments. At the sites, I offer thousands of pages of information on thyroid disease, maintain an active bulletin board, and provide links to hundreds of online sources of conventional and alternative thyroid information. Back in July 1997, I also started a newsletter called Sticking Out Our Necks that offers the latest thyroid-related news on health, drugs, treatments, tests, companies, and alternative therapies for hypothyroidism and its symptoms. I expanded the newsletter, offering it also as a print version by regular mail in 2000.

    In 1997, I assembled the hundreds of doctor recommendations I've received and created what is known as the Thyroid Top Doc Directory, a state-by-state and international listing of the best doctors recommended by thyroid patients around the world. The Thyroid Top Doc Directory still exists and is regularly updated, and is the only patient-recommendation database of thyroid doctors in existence.

    And along the way, despite my hypothyroidism, I even succeeded at my most important project of all, giving birth to my wonderful daughter, Julia, in late 1997.

    Every day for the past eight years I've studied as much as I can about thyroid disease and hypothyroidism, searched for information on conventional and alternative ways to diagnose and treat hypothyroidism, and turned around and put that information out via my Web pages, news reports, guide. As part of my educational mission, I've answered many thousands of emails from people with hypothyroidism from the U.S., Canada, England, Germany, Australia, Indonesia, Saudi Arabia, Peru, Pakistan, Brazil -- seemingly everywhere. Over and over again, people write, pouring out their hearts, sharing the same concerns, the same problems:

    For five years, I suffered from increasingly debilitating symptoms, and no doctors ever correlated my list of symptoms as clear evidence of hypothyroidism. I was always feeling cold, I had unending fatigue, sometimes sleeping eighteen to twenty hours a night on weekends and twelve hours a night during the week, low blood pressure, allergy and sinus problems, bone and joint pain, depression, memory loss, a very sleepy state I now call brain fog, depression, and mood swings. You'd be moody too if you were constantly exhausted and often confused and overwhelmed by things that used to be crystal clear to you. In five years, I slowly evolved from a highly productive, very social, and caring person to someone who chose to be alone and felt like a failure in life. I was self-isolated—secretly feared that I had early Alzheimer's, or worse, undiagnosed cancer or another major illness . . . -- Alice

    At the age of thirty, I thought I was dying inside. My cholesterol was 436. My doctor called me and asked, "What do you eat?" I told him I didn't eat that badly. He ran more tests and I asked him to check my thyroid. He said, "Okay but I don't think that's it." Well it was. My TSH was 218! He said I should be in a coma. -- Tracy

    My family doctor referred me a specialist, head of endocrinology department, suspecting hypothyroidism. I saw the specialist, complaining of my symptoms, including disgusting weight gain, depression, and lack of energy. He laughed at me and said that I was pregnant. I said, "No, I'm not . . . positively without a doubt I am not pregnant." He kept laughing, and said, "Yes you are, I'll see you in nine months!" And he walked out of the room. That's it. I was in tears and angry when I left. I went the next day to my gynecologist's office, where a pregnancy blood test proved that I was not pregnant. I was referred to another doctor, who, based upon my skin, eyes, blood test, and reflexes, immediately diagnosed me with Hashimoto's disease. I just want people to believe that they themselves know when their body is acting crazy. Find a doctor who will help—not think you are insane or pregnant! -- LuAnn

    When you receive dozens of emails like this every single day for years, it's obvious something is wrong, and someone needs to do something about it. That's why I wrote this book.

    ABOUT THE INTERNET

    Throughout this book, there are references to Web sites, emails, and Internet-based resources. If you have access to the Internet, you can visit this book's Web site, at http://www.thyroid-info.com. The site features links to the Web sites mentioned in the book, organized as up-to-date links, along with updated information and late-breaking news.

    I hope these references don't intimidate those of you who are not veteran Web surfers or who don't consider yourselves computer literate. The Web has become an integral part of health research for many consumers, including me. But I wrote this book because I know that for every email, bulletin board post, or fax I've received saying: "Help, I feel so alone" or "My doctor won't test me!" or "I'm gaining weight but my TSH is normal!" or "Why won't my doctor even test my thyroid?" there are so many more of you out there who are not online who face these same situations.

    There are so many of us, millions actually. And we're finally going to start talking out loud about what many of us have been suffering with alone, silently, for many years.

    CHALLENGING THE DOCTRINE, GOING BEYOND THE CONVENTIONAL

    In this book, I do express concerns about the mindset, skills and biases of some doctors, but I don't want you to think that I have a vendetta against doctors in general. I thank the heavens that there are doctors and practitioners who love medicine, who love the idea of caring for, healing, and curing patients. These wonderful doctors keep asking the right questions, keep looking for better answers, really listen to their patients, and are passionate about finding new ways to be our partners in the search for wellness. I have met many wonderful doctors and practitioners—including the experts who have contributed to this book, and the doctors who care for me personally—and they are sympathetic, smart women and men I consider to be my friends, colleagues and partners in wellness. They march to the beat of a different drummer, and think for themselves. I respect them completely.

    But unfortunately, all doctors are not like them. Some doctors end up believing that they learned everything there is to be known about diagnosing and treating hypothyroidism back in med school – no matter whether that was 5, 15, 25 years ago. Scary, isn't it, that some medical professionals—the people we entrust with our lives and our health—can be so unwilling to change with the times?

    You'll soon find out that many of the most forward-thinking and successful practitioners believe that relying on the TSH test as the way to diagnose hypothyroidism is an incomplete and ineffective approach that misses many cases of hypothyroidism. New research has dramatically changed the TSH blood test ranges used to diagnose and manage hypothyroidism – yet many practitioners don’t know this, and are still diagnosing and treating patients according to old, outdated ranges. Other research has also demonstrated what many thyroid patients, myself included, have known for a long time— that some people don't feel as well on levothyroxine (i.e., Synthroid™) alone as they do with the addition of a second thyroid hormone. This report was published in the New England Journal of Medicine. Other practitioners believe that natural, desiccated thyroid should be the primary treatment, because of its superior effectiveness with their patients. And in the midst of all these developments, the majority of doctors continue to rely exclusively on narrow interpretations of the TSH test for diagnosis, and solely use levothyroxine for treatment, condemning some people to undiagnosed or undertreated hypothyroidism and the poor health and diminished quality of life that comes along with it.

    One woman with hypothyroidism asked me:

    Why did the doctors stop listening to the patients' valid concerns and start ignoring total deterioration in health in order to devote themselves to the results of a test and treatment with only one drug?
    That is an important question, one that I try to answer in this book. The opinions of the mainstream, conventional medical establishment are well represented in the other books and patient-oriented pamphlets on thyroid disease. Pick up any pharmaceutical-company pamphlet on hypothyroidism that you can get from many endocrinologist offices, buy one of the books offered by the various official thyroid groups and organizations, or visit one of their official web sites, and you’ll see the official accepted party line on hypothyroidism. Unfortunately, following the party line often leaves people desperate to feel well again.

    The time is now for the millions of patients with hypothyroidism—people who actually have to live with the condition—to have a chance to be heard and, ultimately, to live well.


    INTRODUCTION TO 2005 REVISED SECOND EDITION

    INTRODUCTION TO 2ND EDITION

    I am doing a lot of traditional, subversive things -- like listening carefully to my patients.
    DONALD “DOC DON” MICHAEL, M.D.



    When I first wrote this book, back in the late 1990s, I felt in some ways like a lone voice in the desert. There were a few books that talked about thyroid disease, but nothing that seemed to speak to the situation from the perspective of patients. Many publishers at the time weren’t convinced that thyroid disease was of interest. I was so grateful that my publisher and editor saw the potential interest in thyroid disease, and were willing to take the risk of publishing this book.

    Since that time, the book has gone into more than 20 printings. After this book spent months in the Amazon.com Top 100 Bestsellers list, a number of other books about hypothyroidism were rushed into production by other publishers. Rather than being concerned about the competition, personally, I am thrilled. There is an epidemic of hypothyroidism out there, and the word needs to get out every way it can, and from many perspectives. This sudden surge of interest in hypothyroidism tells me that the publishers and the public are finally starting to get it. They are finally realizing that hypothyroidism is not just some easy-to-treat nuisance condition that plagues overweight, lazy, malaisey middle-aged women, as some practitioners and members of the public wrongly believe. This ugly stigma surrounding hypothyroidism is lifting, and the awareness is starting to spread, as people begin to recognize that hypothyroidism affects more people in the United States than even diabetes, a far more visible condition that is constantly in the news.

    But now, more than ever before, we need even more people and practitioners to become educated about hypothyroidism, and that is why it is time for this updated new edition.

    When the first edition was published, the “official estimates” of people with hypothyroidism were 8 to 10 million, but many of the organizations and experts I consulted said that they believed the number was more likely in the range of 13 million. Then, a study known as the Colorado Thyroid Disease Prevalence Study was published in early 2000 -- about the time the first edition of Living Well With Hypothyroidism was released. The study looked at thyroid function in more than 20,000 people, and based on their findings, estimated that there were as many as 13 million Americans with undiagnosed thyroid disease. This study doubled the estimated total number of thyroid patients in the U.S., to a total of 27 million. And since the vast majority of people with thyroid disease ultimately end up hypothyroid, these startling findings doubled the highest estimates of people with hypothyroidism.

    And that’s not all. The Colorado study used as its normal TSH reference the range of 0.3 and 5.1. But in late 2002, laboratory scientists, followed by the American Association of Clinical Endocrinologists, made a recommendation that the normal TSH range should be narrowed to 0.3 to 3.0, and that anything over 3.0 be considered hypothyroid. So the Colorado study, done before these new lab standards were recommended, actually missed millions MORE people with hypothyroidism.

    And that is by the most conservative measures. Some innovative thyroid experts diagnose hypothyroidism and treat patients with TSH levels above 1.5 or 2.0. Yet others diagnose autoimmune hypothyroidism in patients with normal TSH levels, but elevated thyroid antibodies. So if you count those patients, that’s millions MORE still with hypothyroidism.

    Another interesting but disturbing finding from the Colorado study was that among those patients who were diagnosed as hypothyroid and taking thyroid medication, only 60% were within the normal range of TSH – again, using 0.3 to 5.1 as their range. The fact that forty percent of patients, a number that translates to many millions of people, were diagnosed and already taking thyroid hormone -- but not in TSH range -- is of huge concern. These are patients that are likely to not feel well, and have a host of symptoms – including weight gain, fatigue, depression, concentration and memory problems, infertility, even heart disease, and more – that are not being resolved by their thyroid treatment.

    It’s not acceptable that many millions of people with hypothyroidism are undiagnosed and untreated, and even those who are diagnosed have about a 50/50 chance of getting proper treatment. That’s why there is no better time than now to reissue this book in an updated edition.

    With increasing visibility, however, comes increasing conflict, and thyroid disease has become a bit of a minefield. On the one hand, prominent experts are quick to point out -- so often and so automatically as to have become a mantra—that hypothyroidism is easy to diagnose and easy to treat. But these well-accepted new studies contradict that basic doctrine. If it’s easy to diagnose, why are at least 13 million people undiagnosed? And if it’s easy to treat, why are almost half of all patients not even receiving treatment to return them to “normal” range, but less relieve them of their symptoms?

    These are questions that I ask, but that aren’t answered by certain die-hards in the mainstream endocrinology community. They have been, to put it mildly, extremely testy about being challenged in any way. And it’s no secret that this book has seriously rankled mainstream endocrinologists, and some leaders of the thyroid and endocrinology professional organizations. Because I’ve dared to criticize them. I’ve suggested that they aren’t always right. And I’m a patient – a lay person besides – so I don’t have that right. I’m not a member of the medical tribe.

    At one endocrinology meeting, a prominent, nationally-known endocrinologist and officer of the organization opened an educational session for his fellow “thyroid experts” with some humor. His idea of hilarity? A David Letterman-like “Top Ten” list of “Top Ten Signs You Have a Crazy Thyroid Patient Walking Into Your Office.” Number two was “She comes in carrying a copy of Mary Shomon’s book.”

    Yes, it’s disturbing to know that when the endocrinology community gets together to learn, they start out by making fun of ill patients who are trying to get information to feel well. But they can make fun of me all they want! Because hearing that doctors say I'm "crazy," and that they dread patients who walk in carrying copies of my book is the BEST thing anyone could say. That means that I'm doing my job as a patient advocate...that the endocrinologists are taking notice, and that you will find information in this book that they don’t want you to know! Interestingly, not one of these critics has ever mounted a legitimate, intelligent medical argument against the information I present. Not only is that lazy and unscientific of them, but it’s quite illuminating. As Margaret Thatcher once said, “I always cheer up immensely if an attack is particularly wounding because I think, well, if they attack one personally, it means they have not a single…argument left.”

    Now, nearly five years after the first edition of this book was published, it’s become even more evident that those physicians who want to protect the conventional, narrow-minded approach to thyroid diagnosis and treatment have run out of arguments. They don’t have all the answers, and they resent it that patients are becoming educated, informed, empowered health consumers, willing to shop around to find the doctors who DO have answers. Patients are hitting these doctors where it hurts – their pocketbooks and their egos – and what is the doctors’ response? Instead of reasoned argument, they disparage their more innovative colleagues, they scoff at my book, they dismiss the information patients get on the Internet and from other books, and attack me personally.

    Now, in case you think I’m taking it too personally, I’m not. If anything, I’m more encouraged than ever, because even as the narrow-minded die-hards are becoming fewer, the number of physicians who are better prepared to diagnose and properly treat hypothyroidism is on the rise. In the past 8 years, I’ve seen many doctors shift away from dogmatic, “you’re a lab value, not a person” decision-making to practicing far more nuanced, patient-oriented medicine. Some of the innovative thyroid practitioners who weren’t household names five years ago, like Dr. Ken Blanchard, have now become nationally-known thyroid experts. Ken has even written his own terrific book, and has a new patient waiting list a mile long. There are many doctors’ offices and wellness centers where my book is on display, and many doctors even tell their patients to read my book. And right here in this book, you’re going to meet many innovative, enlightened and amazing practitioners who truly understand how to help us all live well.

    The years since this book was first published have been a rewarding, amazing journey. Many thousands of people have called, written and emailed me to say that this book has helped them find the solutions that work for them, has helped them find the doctors who are their true partners in wellness, and helped them find the thyroid medications that truly relieve their symptoms. People have contacted me to say that Living Well With Hypothyroidism has allowed them to finally make peace with their health and get back to the business of living well. I’ve gotten many kind letters from doctors and practitioners, thanking me for writing the book. I am just overwhelmed by and so grateful for the support and kindness of so many wonderful people who make me realize that it is all worth it.

    Ultimately, there is no greater gift for me than the knowledge that this book has, in even a small way, helped anyone to truly live well. And I hope that this second edition can reach out to even more people, and offer more hope for now and the future.

    Live well,

    Mary J. Shomon
    Kensington, MD
    June 13, 2004

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