In 2007, I was a recently divorced, single working mom with three children. I worked for the custom publishing division of a large city magazine developing magazines for the health and financial services industries. I worked from home, but traveled periodically to my home office in Dallas or to see clients. One night when getting off of a plane from a business trip to Dallas, my neck became painfully stiff and tight from falling asleep awkwardly on the airplane. The stiff neck turned into a numb arm and some tingling in my fingers. When it didn’t resolve itself, I eventually went to have it checked out by my doctor. I probably developed some neck issues that surfaced after lugging my laptop and luggage through the airport.
As I worked on the neck and shoulder problems, we did an MRI to look at my spine for deterioration or other matters that would explain the pain and numbness. The radiologist noticed that my thyroid was enlarged in the radiology report. I assumed it was just a genetic anomaly in my anatomy or a shadow on the film, but I nevertheless went through the motions of having an endocrinologist take a look. I was going to physical therapy daily to deal with the nerve pain and numbness. By the time I got to the endocrinologist, I had already done several studies, all of which showed a normally functioning thyroid. I felt that I just needed another stamp in my healthcare passbook. I took it in stride when the endocrinologist did a needle biopsy that morning and said that the way my thyroid gland presented was unusual. When he told me that 9 out of 10 people are perfectly fine, I knew I was among the 9. One side of my nose is smaller than the other; one leg is slightly longer than the other, and when I was nursing one breast was fuller. As I hopped off of the table, I figured it was just another physical oddity.
The next day, they called me into the office to go over the results. As a 44-year-old mother of three children with a home office, I just felt anxious to get back to what or who most needed my immediate attention.
The biopsy showed cancer.
That September 11th, I walked out of the office in shock, stood aimlessly in the sunlight, called my fiancée and cried. The next step was surgery and then radiation. If you ever get a serious diagnosis like that, everything kind of shifts and suddenly you are headed down a series of tunnels not really knowing where they end. I don’t know if I can remember all the stages, but I felt low grade fear to total terror the entire time. I had been avid and consistent about exercise since I was in college. I had eaten healthy my whole life and had not had a weight problem. My two pregnancies, one of which was with twins, had been smooth and uncomplicated. Other than some colds and bronchitis, I thought that I had been living well.
My divorce had come after a lot of quietly unhappy years and was much more bitter and lengthy than I had thought it would be. But I have always been grateful for my health. The strongest emotion I remember was a betrayal… by my body. I had dealt with other difficult hurdles, obstacles and even disappointments, but I did not see this one coming. If cancer could grow without me knowing it, then what else couldn’t I foresee or prevent?
My surgery went fine and I was home the next day with a mid-neck scar that healed pretty quickly. The sense of vulnerability seemed quieted. They didn’t find other cancers and the margins were clear but thin. But there were not just one, but two kinds of cancer on both sides of my thyroid. In typical fashion, I wanted to be the ideal patient, and so I hoped that if my surgery went well, I wouldn’t have to accept or face any other treatment. But it was not to be. I had to have a course of radiation to make sure cancer did not recur. I remember asking my endocrinologist if the high dose of radiation would cause other cancers or illnesses, and he looked at me as if I was crazy. It hit me then that the limitations of medicine come from the over-specialization and myopic, the un-holistic viewpoint of the medical field. I think he saw me as “thyroid cancer patient Y.” And as long as “thyroid patient Y” never got cancer again, his job was done.
Those questions about the quality of my life, my ability to care for my children, and what other issues I might encounter weren’t really in his scope of practice. To say he just didn’t care is perhaps unfair, but the other aspects of my life wouldn’t be his problem professionally. In medicine, the object and target of focus are the diseases itself: you find the disease, you name the disease, quarantine the disease and destroy the disease, in true militaristic fashion. Destruction of disease equals “success.” The patient (the person who struggles with illness) is really just a carrier for the disease, not the author or the influence of the disease. Healing is really what happens after the surgery.
My father flew out to be with me during radiation. The most awkwardly difficult part of the day was having my treatment delayed until I could provide a negative pregnancy test. The idea that I would actually be pregnant with three children of my own while I was newly diagnosed with cancer, but still had to prove it to the tune of a $120 pregnancy test was decidedly un-funny that day. I swallowed my radiation pill in an isolation chamber and then spent the next 5 days unable to eat, sleep or share bathrooms with any family members until the radiation did its magic.
Many people will tell you that thyroid cancer is the “good cancer.” I don’t know who sits on the cancer naming panel, but I wouldn’t say that it or any other cancer is one that any person would want. Although the differences between thyroid loss and the loss of a breast, liver complications, orpancreatic cancer are evident to me, I still wouldn’t call it “good.”
The real journey toward healing took place after the cancer was out and after the scar healed. The truth is that the thyroid controls most metabolic processes in the body and its malfunction can compromise every single cell in the body – something no one ever explained to me. A low performing thyroid can result in weight gain, even thinning hair. It can mean complete and total exhaustion. It can mean insomnia. It can create anxiety and depression. It can mean sensitivity to cold, heat, and poor body temperature regulation. It can mean food sensitivity and the need to eliminate foods that make the body function poorly. The thyroid is very susceptible to environmental toxicity. Proper treatment administered by the right physician in the right dose over time is complicated and can take months and months of trial and error. And only about 50 percent of how you actually feel is induced by the medication.
The rest you figure out on your own. Trial and error. Trial and error. Error. Error. Error. And in the meantime, your hair falls out and you pick it up in clumps from the shower and your hair brush. You gain weight. You make mistakes trying to eat low fat foods and maintain your weight through intense exercise. You have days of super low energy and crave sleep like it’s a drug. There were days when my thoughts would race and a single disappointment would trigger a mountain of sorrow. I could always rebound emotionally through projects, remembering gratitude, exercise, and gardening, but sometimes the journey back to feeling resilient and happy took days. And it probably took a toll on everyone around me as well. And chronic insomnia took a toll. I spent 6 years not being able to fall asleep, stay asleep or wake up feeling rested.
After going back to school to update my education in nutrition, I began to study some of the functions of the thyroid from a functional medical perspective. I started to understand the complexity of the thyroid as it relates to metabolism. I emerged profoundly shocked by the lack of information my physician had given me about what foods interfere with proper thyroid function. I understood the role of exercise. I took a special interest in the health consequences of high cortisol and adrenal fatigue, which I had never learned in my earlier work in traditional clinical nutrition. I began to understand that managing fatigue and stress and diet were critical components of my healing.
But the hardest part was to unravel my thinking… my constant need to make everything OK, to never disappoint anyone, to overachieve and produce at any cost had impaired my ability to heal. And yes, I was willing to go down the symbolic rabbit hole of believing that the thyroid represents creativity and voice and I had lost mine. For me to heal, I had to become more authentic, discover my passions and believe that I was deserving of enjoyment. I had to accept feeling worthy and confront deep feelings of not feeling good enough by giving all of my gifts away. I often gave those gifts to those who discarded them and devalued them. But that was my own doing, and only I could rescue myself. If anyone ever told me that emotional and spiritual work was a necessary part of healing, I would not have believed them. But when that heaviness was removed, I was able to heal. The scar was nothing compared to the existential work that finally lifted me out of that painful place.
Here are five things I would share with anyone living with low thyroid or no thyroid that I learned on my own:
1. I steer clear of all things soy since soy is a phyto-estrogen and interferes with the function of the thyroid. I previously consumed protein shakes and other soy based foods thinking they were healthy. *
2. Aiming for a low body weight or low body fat physique causes the thyroid to slow down further and only creates more fatigue and low energy. While I maintain a good body weight, I can’t tolerate excessive or exhaustive exercise.
3. I used to go through periods of hyper-focus working on projects. I now know to pace myself because one day like that can mean two days of exhaustion. Mini breaks are prevention for big setbacks.
4. My emotional state mimics my physical state. If the thyroid is the metabolic thermostat of the body, I have to look at everything that I put in my body that could be toxic. Creating a peaceful home, a non-chaotic environment in work, friendships and boundaries was so necessary.
5. I guard my sleep carefully and have a wind-down approach to rest that includes turning off electronics and minimizing stress before bed. I have finally achieved restful sleep again.
I know fully what that misery was like, and I hope never to go back there again. The lack of helpful and comprehensive information about what leads to thyroid issues and how to address them thoroughly and holistically is my true passion and calling. As a health coach, I provide mentoring, information, guidance and wisdom on how to get better care so you can avoid the mistakes I made.