It Took 3-Plus Years For MDs to Attribute Her Weight Gain and Fatigue to Thyroid Cancer

Jessica Alexiou was working as a professional dancer and health and fitness coach in 2018 when she began to feel like her body was breaking down.

"I started having some really bizarre symptoms. I was gaining weight rapidly. I think I had gained 25 pounds within a month and a half," Jessica tells PS.

Then came the sudden hair loss. "One day I woke up, went to go wash my face in the sink, and I noticed parts of my eyebrows were falling off as I was rinsing my face." In the shower, her hair started falling out in chunks as well. "I have naturally curly hair, and all curly girls know it's normal to lose some hair in the shower," Jessica says. "But this was abnormal amounts of hair."

When Jessica told her primary care doctor of her symptoms, she ran some bloodwork and suggested exercising more and eating less. When that didn't work, Jessica thought the symptoms might be hormonal and related to her IUD. So she went to see her ob-gyn and asked her to take it out.

When she did, "[the doctor] basically told me that it was so warped, that my body was rejecting it or trying to expel it," Jessica says — but the healthcare provider couldn't explain why.

"It was this game of me going from doctor to doctor, and doctors just looking at me as if I was crazy."

Meanwhile, she began to experience additional symptoms — including debilitating fatigue. "I remember going into work being on like eight to nine hours of really peaceful sleep and still feeling like I couldn't function in the mornings, like I was exhausted. I'd never experienced anything like that before in my life," Jessica says.

She also developed pain on the right side of her neck and an extremely swollen lymph node. When she went to see her primary care doctor, she referred her to an ear, nose, and throat specialist, who diagnosed Jessica with acid reflux and Eustachian tube dysfunction, "a condition where the tubes that connect your middle ears to your upper throat become blocked," according to Cleveland Clinic.

Jessica was prescribed antibiotics and steroids and told to come back in a few weeks to see things how improved. But two weeks later, Jessica returned with no improvement to her throat and a new symptom. "I started having ringing in my ear at night. When I would lay down, my ear would ring and it almost felt like I was hearing an ultrasound in my ear," Jessica says. "It was keeping me awake and it was simultaneously freaking me out." When she asked the ENT for imaging, he said she didn't need it and that the ringing would probably go away on its own.

At this point, Jessica had to step away from her career. Her symptoms were debilitating, and she'd gained around 75 pounds. "It was literally physically painful to dance," she says. She dedicated most of her free time to researching potential causes for her issues.

"I was that person that was trying to get to the bottom of this because I felt like doctors weren't helping me. I felt like they were gaslighting me, to be honest," Jessica says. When she Googled her symptoms, "everything was pointing to thyroid disease," she says.

So at the end of 2021, she went back to her primary care doctor with her medical history and research, determined to get imaging done.

"I said, 'I would like a thyroid ultrasound,'" Jessica says. But her PCP was hesitant, having felt her neck. "She's like, 'I don't feel anything. If you had a thyroid tumor or a thyroid nodule, I'd be able to feel it.'" At one point, her doctor even suggested that her neck pain was being caused by the gallon water bottle she carried around.

But Jessica would not take no for answer. Again, she suggested an ultrasound, asking the doctor to put it in writing if she was going to deny her imaging.

Her PCP agreed to order the testing, and Jessica found out that she had a thyroid tumor that needed to be evaluated. "In that moment, l felt so vindicated, because it took so long for me to get answers," she says. But she wasn't prepared for the next piece of news that she'd receive: further evaluation of the tumor confirmed that it was cancerous.

In that moment, Jessica felt a whirlwind of emotions: joy, because the cancer was on the less-severe end of the spectrum; pride, in herself, for pushing her healthcare providers to finally give her the care she deserved; but also anger and frustration, because it had taken years to receive a diagnosis.

"This could have been discovered so much sooner had doctors just took me seriously," Jessica says.

At first it was suggested by an endocrinologist that she get her thyroid removed entirely, which Jessica was hesitant to do.

"From all the research I had done, I knew the thyroid is involved in so many things that your body requires. Not just your weight — it regulates metabolism, but it also affects your blood pressure, your calcium levels, your mood. So many things," Jessica says. Removing it entirely seemed pretty drastic.

So she asked if there was an alternative. Her doctor suggested she get half removed so that she'd still have the other half to regulate. And at that point, Jessica decided that she wanted to do her own research to figure out some alternative options.

That's when she learned through a Facebook group about radiofrequency ablation (RFA), a minimally invasive procedure where, according to UCLA Health, "a small needle electrode is inserted into the thyroid nodule using ultrasound guidance. Heat generated at the needle tip destroys the target tissue." She reached out to a specialist about RFA to see if she was a candidate.

In November 2021, Jessica had her first RFA procedure and "literally all of my symptoms have resolved," she says. It took about a month to recover from the procedure and a year for the tumor to fully shrink and her symptoms to disappear entirely, but they did. She started shedding weight, her hair grew back, the fatigue faded, and all those debilitating symptoms went away.

Her tumors had returned due to what Jessica was told was an incomplete ablation. "It was confirmed to me by two other RFA doctors that my first procedure was not done well," she says. After consulting other experts and doing her own research, Jessica elected to have her next RFA overseas where the procedure has been in use for over a decade.

Jessica is now cancer-free after having her last two RFAs in Germany. In terms of management and recovery, she'll need to do ultrasounds every 3 months for the first year, but the "number one thing is managing stress," she says. "A lot of times thyroid issues are exacerbated or even caused by stress and trauma." So she always makes sure to have an outlet if she's feeling overwhelmed, whether that's exercise or taking some time to herself.

As for Jessica's dance and fitness career, she's not teaching right now, but she is taking classes and lifting weights several times a week — in addition to daily walks. "My goal is to start coaching women (like I used to) who are struggling with their fitness journeys but Im also planning on expanding that help by helping women who are struggling with their thyroids," Jessica says.

She also tries to prioritize a healthy diet. Not necessarily cutting out certain foods, "but just being mindful of nourishing my body with greens and protein and whole grains, not skipping meals and not depriving myself, because the thyroid also gets stressed out when you do skip meals and you're not really balancing your nutrition."

Overall, Jessica says she feels incredibly grateful. The experience has taught her that "no one knows your body better than you do," she says. "Your body will always communicate to you if something's wrong." And this lesson has trickled down to her family, too. Having watched what Jessica went through, "now they're asking for the tests that they need."

Alexis Jones is the senior health and fitness editor at PS. Her passions and areas of expertise include women's health and fitness, mental health, racial and ethnic disparities in healthcare, and chronic conditions. Prior to joining PS, she was the senior editor at Health magazine. Her other bylines can be found at Women's Health, Prevention, Marie Claire, and more.