I've been a thyroid patient advocate for nearly ten years, and in the course of that ten years, I've received many emails from patients. Sometimes, the notes are despondent. Sometimes they are adamant. But always, they tell a similar story. A story like Audrey's:
I was very tired. As time passed I got more and more tired where I couldn't keep my eyes open. First, the muscles in my legs, and then the muscles in my arms became very painful. I couldn't raise my legs 2 inches off the floor or raise my arms straight up! My eyes bulged. I lost hair, I lost weight. I had jaundice. I had tremors. Finally a lump appeared on my throat. Writing this out for you, I have tears in my eyes. Through all this, not one doctor picked up on the problem. I was told I was a hypochondriac. Finally, after seeing the lump, my doctor sent me for ultrasound test and then nuclear testing. Finally, I was diagnosed with Graves' disease. Imagine the shock on my doctor's face and his embarrassment.
Lorrie's experience is also one that is quite common.
I felt kind of "off". Nothing so serious that I was suffering terribly, but just not feeling myself. I started a job and soon was plagued by anxiety, stomach problems, heart palpitations, mood swings and hot flashes. The doctors -- I was sent to a gastroenterologist, a psychologist, a general practitioner, a gynecologist and an allergist -- did not have a clue what was wrong with me. They wrote it off to stress and having a "sensitive" stomach. I continued enduring the symptoms and hoping that they would go away. I tried to change things about my life in hopes that it would help. But five years after making dietary changes, lifestyle changes, changing my career and moving cross-country, things were worse. I had even worse heart palpitations, achy joints, breathing problems and I could not keep weight on. I ate enormous amounts of food that barely allowed me to maintain my weight. So, I started the doctor circuit again. My gynecologist claimed I just had monthly water weight and should take water pills; the allergist claimed I had asthma and gave me an inhaler. That inhaler nearly killed me one day while exercising because it sent my already skyrocketing heart rate into the stratosphere. Finally, all my symptoms and the fact that my hands were shaking violently clicked with my general practitioner and she gave me a thyroid blood test. I was suffering with severe hyperthyroidism that had gone undetected for years.
Unfortunately, Audrey and Lorrie are not alone. Millions of people in the U.S., the majority of them women, are suffering from Graves' disease and hyperthyroidism, conditions that, at best, seriously disrupt the quality of you life, and at worst, if left untreated over time, can potentially be fatal.
I wrote this book to help you identify if you have the symptoms of Graves' disease and hyperthyroidism. At that point, you'll find information to help you get the proper diagnosis. And then, perhaps most importantly, how to navigate the confusion of treatment options that range from antithyroid drugs, to permanent, irreversible treatment such as radioactive iodine to the thyroid, or surgery. Finally, the end result for most people with Graves' disease and hyperthyroidism is the opposite condition -- hypothyroidism, where you'll life with a life-long underactive thyroid. You'll learn how to manage that part of the disease as well, along with persistent symptoms, such as weight gain, fatigue, depression and hair loss, that can be common, as well as how to have a healthy pregnancy.
This book is for you if:
Before I go any further, I think it might be useful to explain my own background. I'm not a doctor. I'm not a health professional. I have a degree in International Studies from Georgetown University. Somehow, along the way, my battle with my own health led me to start and manage a popular, patient-oriented Web site on thyroid disease back in 1997, and to launch the only monthly report on conventional and alternative thyroid-related health news and treatments. Ultimately, this has turned into a mission as a patient advocate and health writer – including books, web sites, newsletters, and magazine articles -- to help people with their health.
- You strongly suspect you have Graves' disease and/or hyperthyroidism, but are having difficulty getting a diagnosis by conventional means.
- You aren't sure if your various symptoms point to hyperthyroidism, but you need to find out more.
- You've been diagnosed with Graves' disease and/or hypothyroidism, and have been told that you need to have a particular treatment right away. You want more information before you commit to decisions that may affect your health for the rest of your life.
- You have in the past, or are currently being treated Graves' disease or hyperthyroidism, and are still struggling to feel well.
- You are receiving what your doctor feels is sufficient treatment, and yet you still don't feel well.
- You're an open-minded health practitioner looking for innovative ways to understand and help your patients with Graves' disease and hyperthyroidism.
- Above all, this book is for you if you want to learn about living well with Graves' disease and hyperthyroidism from the perspective of empowered patients and caring practitioners.
As a Hashimoto's thyroiditis patient myself, I've had periods of Hashitoxocosis -- or Hashimoto's-induced hyperthyroidism. Truly, I thought I was going mad. I felt agitated, my skin felt hot, my eyes were spasming, jumpy, and twitching. I could barely concentrate, or focus on anything. I was exhausted, but when I tried to sleep, I was restless and anxious. My eyes got so dry that everything was blurry, and I couldn't drive at night. Everything I ate went right through me. And I consider myself fortunate, because these miserable periods of hyperthyroidism -- among the worst times in my life, health-wise -- were temporary flares in a disease that otherwise has caused me to have an underactive, underfunctioning thyroid.
I have written this book for the millions of you out there for whom Graves' disease and hyperthyroidism is not a temporary flare -- it's a permanent, debilitating condition that is forcing you to live in a chronic state of poor health. If you have yet to be diagnosed, you may be mistakenly told that you have panic disorderor bipolar disease. Your friends and family may even accuse you of being anorexic. And you may be going from doctor to doctor, looking for answers. I hope you'll find the answers you need here.
And I've also written this book for those of you who are already diagnosed, who are looking for ways to understand the various treatments. It's not enough that RAI is the standard of care in the U.S. You want to know whether or not there are options that are less drastic and less permanent, or even natural/alternative medicine options. Again, I hope you'll find the answers and support you need here. And finally, by bringing you the stories of the gracious patients who have shared their own experiences, as well as the innovative and compassionate doctors who have taken the time to provide input on their treatment approaches, I want you to have hope. Hope in the realization that you are not alone, and hope in a future of living well with Graves' disease and hyperthyroidism.
Mary J. Shomon