What Does Thyroid Cancer Feel Like? A Personal Account
Key takeaways:
Carmel Samiri, now 35, was stunned to learn she had thyroid cancer at age 31.
Before the diagnosis, she had severe fatigue, and even 12-hour sleep cycles didn’t seem to be enough.
After a biopsy confirmed the cancer, a surgeon removed her entire thyroid. She has returned to normal energy levels with medications and a modified diet.
Carmel Samiri, a 35-year-old creative director and photographer in Santa Monica, California, had been living with thyroid issues for years before she was stunned by a diagnosis of papillary thyroid cancer (PTC) a few years ago.
PTC is the most common kind of cancer affecting the butterfly-shaped thyroid gland near the middle of the front part of the neck.
In her mid-20s, after unexplained fatigue, Carmel was diagnosed with hypothyroidism — or underactive thyroid. The condition was slowing her metabolism and draining her energy.
She was also diagnosed with Hashimoto’s disease, an autoimmune condition that is the most common cause of hypothyroidism.
With an autoimmune disease, the body’s defense system starts attacking its own healthy cells. With Hashimoto’s, the immune system makes antibodies that attack the thyroid gland.
People with Hashimoto’s may also be at greater risk for thyroid cancer.
Carmel started handling her hypothyroidism with medication starting at age 25, but the medication made her “very, very anxious,” she says, and she told her doctor she wanted to stop.
“To me, having anxiety or a slow thyroid? I’d pick the slow thyroid,” she says.
But fatigue eventually worsened to the point her boss at an online shopping company told Carmel she was receiving complaints from coworkers about her forgetfulness and tiredness.
Sleeping 12 hours a night wasn’t enough
Carmel was always feeling run down.
“I was sleeping 12-hour nights, and I was still exhausted,” she says.
Thyroid hormones control how the body uses energy, so they affect nearly every organ’s function — even the way the heart beats.
Carmel started looking for an endocrinologist, and the search took her nearly 2 months, she says. The endocrinologist examined her and saw no obvious troubling signs. She had no lump or swelling on the side of her neck, which is the most common symptom. But Carmel’s previous diagnosis of Hashimoto’s and her description of symptoms led the doctor to order an ultrasound.
“That was a really emotional time for me,” she says, adding that she was saddened that her first ultrasound would be for potential cancer instead of the pregnancy she wanted someday.
The ultrasound results led the doctor to order a biopsy.
Biopsy scheduled as COVID closures began
The biopsy was in March 2020, and Carmel’s fears were compounded by the numbers of COVID-19 cases starting to multiply. Her mother had to drop her off to get the biopsy instead of being by her side.
“You had to go in alone,” she says. “At this point, people had been told not to touch each other for weeks.”
“I remember that was the day I told my mom I think I have cancer,” Carmel says.
But it would be another week before she got the call from the doctor that would confirm the diagnosis of papillary thyroid cancer.
PTC tends to grow very slowly. Carmel says her doctors told her they thought hers likely had been growing for 4 years.
Thyroid cancer is about three times more common in women than in men, and it is about 70% more common in white people than in Black people.
Again, Carmel was on the hunt online for a physician, this time a surgeon who would remove her thyroid.
She had the surgery in early May 2020. Afterward, she needed medications to help replace the functions that her thyroid previously had controlled. Carmel says she was also told to take calcium supplements twice a day after the surgery, but that didn’t seem to be enough.
A scare on the freeway when blood calcium dropped
Days after her surgery, Carmel experienced a sharp drop in her blood calcium levels, which can be a side effect of a thyroidectomy for some patients.
She was in a car with her mother on a freeway, 45 minutes from her home, when she felt increasing tingling in her limbs. Within minutes, her hands started curling inward, and her tongue went numb. She had a strange feeling in her chest, and one side of her face started dropping.
“I couldn’t speak. I couldn’t move my fingers,” she says. It was 45 minutes before her mother could get her home to get the prescribed calcium that could restore body control. Her dad was ready and waiting to give her the dose the minute she arrived. She took the dose along with medication she had taken for anxiety and was able to fall asleep. She woke up feeling fine.
Carmel says she was told she would have to take calcium twice a day “for a couple of weeks” after her surgery, but she found she would need to continue that for a year.
She added that it took a year and a half to find the right medications for her and now takes a regimen of Tirosint (levothyroxine sodium) and Cytomel (liothyronine).
What a thyroid cancer survivor would tell others
Carmel, a freelance creative director, says she encourages everyone diagnosed with thyroid cancer to thoroughly go over options with their providers.
For her, removal of the whole thyroid without chemotherapy or radiation was the right choice, she says. Some patients with certain kinds and certain locations of thyroid cancer may have surgery on only one side of the thyroid.
Carmel also says she changed her lifestyle and now avoids sugar, processed foods, dairy, and gluten.
“Ultimately, removing the cancer was one of the best decisions I’ve ever made,” she says.
Carmel celebrated her third cancer-free anniversary in May 2023 and says she feels great. All that’s left is a 1-inch horizontal scar on her throat.
She says at first she rubbed vitamin E on it in hopes it would fade. Now, she has stopped wishing it away and embraces it like a tattoo.
“My scar is actually an opening to a conversation with someone, a way to connect with other people that might be going through the same thing,” she says.
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