Sick to Death: My Life with Thyroid Disease

From the moment I met award-winning filmmaker Maggie Hadleigh-West this summer in New York City, I knew instinctively that I was meeting a woman who was going to make change. There was a fire in her eyes and an urgency in her interview questions. To know I will be part of her upcoming thyroid film Sick to Death! gives me goose bumps.

Maggie is fundraising with a Kickstarter to help cover costs for the creation of the film and I hope readers will consider contributing.

Maggie Haleigh-West’s film Sick to Death! will shake up the medical world and change corrupt practices around thyroid disease. I know so.

Written by filmmaker Maggie Hadleigh-West

Looking back on my life, I can easily chart my thyroid story from the time I was in single digits. I was sick all of the time and it became more frequent as I got older – and it was always some kind of upper respiratory infection, bronchitis, tonsillitis, strep-throat, pharyngitis, laryngitis-you name it, I got it and often multiple infections at the same time. So a good part of my childhood was spent taking heavy doses of antibiotics.

When I first saw the following 1990 medical text describing systemic symptoms of thyroid disease, I was dumbfounded because it read like the story of my life, but no one was listening.

Thyroid Disease: Endocrinology, Surgery, Nuclear Medicine, and Radiotherapy (1st Edition)
Editor: Stephen A. Falk, M.D., F.A.C.S. / Copyright 1990 Raven Press / Courtesy of Wolters Kluwer Rights and Permissions

My health issues accelerated when I was 11 years old, about the same time of my parents’ divorce. My mother and brothers moved to Minneapolis – the heart of the Goiter Belt, where the soil and food lacks the iodine that supports thyroid function. My hair was always thin, my nails were weak and I didn’t seem to have the cardiovascular stamina of kids my age. In school, I was embarrassed by my “dirty elbows.” By the age of 16, I was told I had scoliosis. Then there were the strange skin infections, grand mal seizures, my slow metabolism and my incredible difficulty trying to memorize things in school. Today, I understand that all of these issues were actually well-documented symptoms of thyroid disease and had the world not been in the midst of a thyroid disease diagnosis and treatment transition, my doctor would have recognized what was happening in my young body. For me, it was just normal life, so I thought very little of it.

When I was 21 years old, I’d developed an infection that ended up lasting for about a year, and then began to feel sickly all the time: I was beyond exhausted and ran a chronic low-grade fever, which sorely diminished my capacity to be engaged in life. It was very clear there something radically wrong with me, yet almost every doctor I saw said I was fine, and it was all in my head.

Retrospectively, I understand my TSH labs were showing up “normal” and that doctors no longer recognized the obvious symptoms of thyroid disease. I don’t even remember the word “thyroid” being mentioned to me as a possibility, until I was 32, and my body was thrown into massive overdrive – there was shaking, sweating, and mood swings, and my metabolism began to run at an insane speed – which had to be stopped or I could go into what’s called “thyroid storm” and have a heart attack and die. I had swung from hypo to hyper without even knowing what was happening.

Finally, after years of self-diagnosing, a doctor diagnosed me with Graves’ Disease – a concrete and apparently treatable diagnosis, but it still scared the shit out of me. Being the health sleuth that I am, I hurried down to the People’s Medical Library in Manhattan and began researching the illness.

Graves’ Disease is a form of hyperthyroidism with an ocular component, which means muscle builds up behind the eyes and makes them bulge forward seemingly out of the sockets.

After I conducted more research and sought multiple opinions, I did something that felt incredibly archaic: I drank radioactive iodine and killed my thyroid. My endocrinologist at the time assured me it was “benign,” but still instructed me to stay away from pregnant women, and flush the toilet three or four times after urinating for the entire following week.

As my thyroid died its slow death, my endocrinologist assured me that all was well: All I’d have to do was take Levothyroxine (also know as Synthroid) – a synthetic thyroid replacement drug – forever, to replace what my gland was no longer producing, and I would function as a normal person. So off I went into twenty-some-odd years of Levothyroxine dosing and a myriad of new symptoms continued to develop and worsen as the years rolled along, without me understanding the drug was not working.

And still I was going from doctor to doctor, convinced something else was going wrong because my thyroid issues had been attended to. By the time I was in my mid-40’s I rode my bike all over New York City because it hurt to walk. I had scoliosis, sciatica, carpal tunnel syndrome, bursitis, low blood pressure, low-grade fever, insomnia, sleep apnea, constant infections, bizarre allergies, a malfunctioning brain, and a zillion other symptoms. When my heart started beating erratically and I was depressed beyond belief, I thought, I am not going to survive this body. It’s time to get the hell outta New York because I’ve got to slow down and get some help, somehow.

At 50, I moved back to New Orleans, where my family is from and where I spent much of my childhood. By then I was certain that my lack of thyroid was the culprit and neither was the medication nor were the doctors helping, so at 53, I totally gave up on the medical community from sheer physical and mental exhaustion.

Then on a blind referral – only looking for an increase in the natural thyroid medication that I had started taking, I walked into the office of Dr. Chuck Mary, an Internist and Integrative Medicine doctor, who immediately understood that I had been suffering with thyroid disease long before Graves’ Disease even came into play. Chuck pointed out all of the clinical signs from my childhood and after, including scoliosis, as classic symptoms of thyroid disease!

After a few months of taking a very increased dosage of natural desiccated thyroid, which Chuck had prescribed me based on my symptoms, the carpal tunnel in my arms disappeared, and I was awake and astounded. I told Chuck how shocked I was at the results, and he showed me his primary medical reference book for treating thyroid disease: It read like a road map of my life. I could not believe that all of the information about my illness was so well-documented – and had been well-documented close to 100 years ago, to boot.

Two hours later, when I stopped crying, I became enraged not just for myself but for all of the people I had discovered who were just like me. I was sick to death when I realized how manipulated we had all been by this medical system that’s fallen victim to capitalism – even as it’s killing off its income source – and so I decided to make my fifth film.

So here I am in the trenches, trying to assist in righting some major wrongs with an army of social networking patients, advocates, and good doctors – all of us, fighting the good fight!

About Maggie Hadleigh-West

Over the course of her career, Maggie Hadleigh-West has been internationally recognized as an activist, independent filmmaker, public speaker and the founder of the corporation, Film Fatale. Maggie Hadleigh-West is a 2013 Guggenheim Fellow Award Winner, 2010 Indie Fest: Audience Impact Merit Award Winner, 2010 Accolade Merit Award Winner, 2009, 2006, and 2005 Alcyon Foundation Fellow, a 2004 New York State Council on the Arts Fellow, 2001 University of Louisville Distinguished Professor Nominee, 2000 Rockefeller Fellow Nominee and a 1998 Berlin Film Festival Caligari Nominee.

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