Dr. Cynthia Li’s personal story had me hanging onto every word…incredible.
Written by Cynthia Li, MD
The thyroid, as described by the Merck Manual, a doctor’s Bible:
A small gland, measuring about 2 inches that lies just under the skin below the Adam’s apple in the neck. The two halves (lobes) of the gland are connected in the middle (called the isthmus), giving the thyroid gland the shape of a bow tie.
Other texts describe the gland as a butterfly.
Three months after the birth of my first child, I was walking up the front stairs of our classic Victorian in San Francisco when my breath quickened. My head swooned. As I brushed my teeth, I felt a cold coming on. My throat was sore, but from the outside. I had hot flashes. Clumps of hair clogged the shower drain like a dead tarantula.
“You’re a nursing mother,” friends would say.
Or, “The same thing happens to lots of women.”
I was a doctor, after all. Having treated the full spectrum of illnesses, I did not want to jump to the worst-case scenarios.
Days were hard. Nights were harder.
I would nurse my babe, lay her to sleep, and hope to seize the darkness for sleep or plain rest, as the former had fallen prey to insomnia.
My husband would be waiting for his wife. Never one to complain, he would lie on the other side of our wide bed. His body would be glum, his hair mussed. I would respond with a touch of reassurance, which, in his book of translations, meant yes. So before I knew it, the reading lights would go out. The door would close. After a time, his breath would whistle in deep slumber. I would remain sleepless. A couple of hours later, a wee cry would emerge.
“How’d you sleep?” my husband would ask at dawn.
“Welcome to motherhood,” friends would say.
I did what doctors do when confronted with uncertainty: sought out certainty from a top-notch specialist at a university hospital.
My endocrinologist wore a white lab coat, an Oxford shirt, and a bow tie. The bow tie sat just under the Adam’s apple in the neck, as described by Merck.
“Your presentation is unusual for a postpartum case,” he said. My thyroid hormones were sky high. My antibodies were negative. He recommended I undergo a nuclear scan to determine my precise diagnosis.
(Was this necessary? Was this safe? Was this okay while I nursed my baby?)
He is the doctor, I reminded myself. I didn’t want to fall under the doctors-make-the-worst-patients stereotype.
I ingested iodine-123 for the scan. This isotope emits less radiation than other medical isotopes.
Radioactive iodine can cause hypothyroidism.
The radiology tech instructed me to discard my tainted breast milk for a few days. Unable to reconcile any exposure for my babe, I spent a good part of the next month on a wobbly stool next to the utility sink in my garage. The garage was dank, a combination of mildew, gasoline, and stale rags. I would plug the breast pump in and tunnel the plastic funnels under my shirt. Swish, swish… swish, swish… Until my milk—and the remnants of my morale—was tapped dry.
A normal thyroid scan looks like two black thumb prints on a white screen. Mine was washed out, with faint dots scattered throughout. This meant I had postpartum thyroiditis, an autoimmune condition similar to Hashimoto’s. It started out as hyperthyroidism, and would either progress to hypothyroidism or normalize.
“My body is attacking herself,” I said to the endocrinologist when I returned for the results. “How do I reverse this?”
“Your condition is genetic,” he said.
“Genetics account for seventy to eighty percent,” I said, hoping to engage in respectful dialogue. “There must be some other factors—”
“It’s genetic,” he said, firmly.
One Sunday morning, an article in the New York Times Magazine caught my eye. It highlighted chemicals in our homes, couches and personal care products, which disrupt hormones and increase risks of certain cancers, infertility, diabetes, obesity, and thyroid disorders. I pushed my tea and toast aside to research these claims. The thyroid gland, I learned, is extremely sensitive to pollutants. In this regard, it is a butterfly—its wings can easily tatter. It is a bow tie—once undone, it is near impossible to put back together. The explosion of chemicals in the last fifty years could, in part, explain why thyroid supplements are the most commonly prescribed drug in America. (Pharmacies dispensed 23 million prescriptions of levothyroxine in 2013.)
Being a healthy person depends on a healthy world.
Being a healthy person also depends on healthy detoxification (the job of the liver) and elimination (the job of circulation, urination, perspiration, respiration, and digestion).
My inner workings felt like autonomous beasts.
My immune system was a dragon. She’d once been trained to fight off invaders: viruses and bacteria and other unwelcome germs. She’d also perform housekeeping duties like removing metabolic waste. But the dragon became untamed in the barrage of postpartum hormones and attacked my tissues instead—a case of friendly fire. Her fire caused aches, fatigue, and foggy thinking. Her fire destroyed my thyroid gland. Thus, she was unavailable to fend off true invaders. Viruses ran amok.
At a follow-up appointment, a younger endocrinologist at the same university hospital covered for my regular doctor. After reviewing my case, he asked, “Why’d your doctor order the radioactive scan?” It was unnecessary, he said.
Surveys show doctors often recommend treatments they wouldn’t choose for themselves if faced with the same circumstances. Doctors base their recommendations on survival outcomes and disease end-points. (Data.) Patients base their choices on survival as well as quality of life, risks, and experiences of friends and family. (Real life.)
I thought of the gallons of breast milk, discarded.
The more disorganized my inner workings became, the more external order I needed.
“Please help with the housework,” I requested of my husband, often.
“Don’t worry so much,” he responded, often.
Once, he was lying on the couch watching television and munching on popcorn. I hadn’t slept well the night before. My body was achy. I had changed our daughter’s diaper, done the dishes, and swept the floor.
“Would you bring me the newspaper?” he asked from the couch.
I did not respond.
“Hon, would you bring me the paper?”
I did not respond, again.
He looked up, detecting the carbonated rage below the thin skin of my face.
“This isn’t you, Cynthia,” he said. “It’s your hormones.”
“I am my fucking hormones,” I said.
My hormones and I walked out of the room.
If my immune system was a dragon, my hormonal system was an octopus.
Like the arms of a magnificent octopus, each hormone tendril undulates to its own rhythms. They also synchronize as a unit. The octopus’s brain commands its tendrils; likewise, glands in the human brain—the hypothalamus, the size of an almond, and the pituitary, a mere pea—govern hormones. My hormones were low, across the board. Not dangerously deficient, but just within or below “the reference range.” My hormonal system was a fuddled octopus that, on a good day, could experience a short burst of propulsion.
Ongoing inflammation, autoimmunity, or stress—from allergens, infections, processed foods, pollutants, and psychosocial trauma—can depress the octopus. Perhaps this vicious feed-forward cycle was an adaptation to guard the body against pregnancies. This made perfect sense from a survival standpoint. From a day-to-day standpoint, though, my body was a passionless creature.
My husband desired me, still.
A former patient of mine once asked, “Whatcha got for my man muscle?” as I was discharging him from the hospital. He was eight hundred pounds; his wife, three hundred. The tremendous inflammation associated with his weight and other triggers must have depressed his hormonal octopus. I shook my head in judgment, focusing on important medical items. I could not see then what mattered most to him.
“I still feel tired and dizzy,” I said. This was two years after my initial diagnosis. “My insomnia is horrible. My heartbeat is erratic.”
“Let’s see,” my endocrinologist said, tapping his fingers on the keyboard. “Your numbers are within the reference range.”
A researcher first explained a line of averages to me during a college internship. I worked in a microbiology lab investigating the effects of hyperbaric oxygen on certain bacteria. When I plotted the results, my data points fell into a rainbow arc on the page. A few dots landed in isolated corners. “What do they mean?” I asked. “Nothing important,” he said. “There are always some that don’t fit in. We focus on the rest.”
Doctors do the same with these stray dots. Toss them out.
I didn’t fit any criteria for disease. Doctors (I) sometimes refer to such patients (me) as “difficult patients.”
One night, I escaped my reality. I dreamt of a simple, thatched hut in a lush valley. Dew moistened the grounds. Doves streamed the air. Butterflies caressed the fronds.
Butterflies bring such joy when they soar.
There had been a hut. On a tropical island, among heart-shaped leaves. We were on honeymoon. Rattan ceiling fans rattled as we shared moments of passion and watched horror movies from the collection in the wicker basket. I curled my body into a perfect ball in the circle of my new husband’s arms.
Returning to my reality, I remembered the smells. The sounds. The lights. The nights. My passions lit me up, as well as my husband. Convinced my hormones were coming back, I went to the lab the following day, only to discover they remained flat.
So, was I my hormones?
Between the clinical definition of disease and the human experience of illness, there is a chasm—a chasm filled with messiness and misery. But if we look, there are precious bits of mercy, too.
About Cynthia Li, MD
Dr. Cynthia Li is board-certified in internal medicine. She has a private consultation practice in Berkeley, CA, where she applies the principles of functional medicine, a comprehensive approach that addresses root imbalances for chronic conditions. She is the author of a forthcoming memoir about her personal health journey with autoimmune thyroiditis, chronic fatigue syndrome, and other mysterious maladies. She lives with her husband, their two daughters, a hyperactive dog, and 50,000 honeybees.