Malina Lee, a 31-year-old wedding baker based in San Antonio, Texas, joined TikTok during the Covid pandemic lockdowns in 2020. She began using the platform to pass the time and advertise her business.
Four years after Lee joined the app, a commenter with the username “PickleFart” told her that her neck looked asymmetrical in a way that could suggest she had a goiter – an enlarged thyroid gland – and that she should get it checked out. The anonymous amateur clinician turned out to be right – Lee had thyroid cancer, received treatment quickly, and, less than a year later, was cancer free.
“My oncologist actually was in awe that I had caught it so early,” Lee said. “I hate to say it, but I would not have gone to the doctor unless I had seen that comment. The process was accelerated by someone called PickleFart, what can I say?”
TikTok users are increasingly reporting that the app’s hyper-specific algorithm has steered them towards detecting medical problems before they were aware of them themselves. In many instances, users reported that symptoms described by other TikTokers matched their own inscrutable set of ailments, which led to diagnoses. In instances like Lee’s, human commenters were responsible for diagnoses that doctors had missed or not yet identified.
Lee is not the only user that PickleFart, whose real name is Billie Jean Tuomi, has accurately diagnosed in a comment section. By her estimate, Tuomi has commented on dozens of videos alerting content creators of potential thyroid problems – and correctly spotted serious problems in at least four cases that she knows of, including Lee’s.
“If it weren’t for the original comment, I’d probably be really sick now or would still have cancer,” Lee said. “I do owe my life to TikTok now.”
The ‘thyroid avenger’
Tuomi’s career as the “thyroid avenger”, as some have started to call her, is personal in its origins: she herself was diagnosed with thyroid cancer in 2012, and after two years of treatment was declared cancer-free. She now finds herself trying to spare strangers on the internet what she went through.
“It’s something that you don’t ever stop struggling with – it’s constantly on my mind,” she said. “The earlier you get diagnosed, the easier it is to treat, so I feel like it’s important to say something if you see something.”
The biggest sign that alerts Tuomi to potential thyroid problems when she is scrolling TikTok is visible asymmetry or enlargement in a user’s neck. If one side of someone’s neck “pops out” more than the other, she said she might gently comment on their video and suggest a thyroid panel – a blood test that measures thyroid hormones. The lab work can show whether the gland is overactive, underactive or functioning normally. It also can detect antibodies that could indicate an auto-immune condition or thyroid cancer. The American Thyroid Association recommends adults get their thyroid function tested once every five years starting at 35 years old – and yearly if a patient is high-risk or has confirmed thyroid concerns.
Like Tuomi, after recovering from thyroid cancer, Lee finds herself hyper-aware of people’s necks on the app – and has even taken up the “thyroid avenger” modus operandi, commenting on a couple of users’ videos to let them know they should get their levels checked. One user recently had an enlarged thyroid removed thanks to Lee’s comment, she said.
“It was just a domino effect of someone who kindly commented to me that I may have a problem, and then I kindly commented the same to someone else,” Lee said.
Despite her online reputation, Tuomi said she is careful not to claim to be able to diagnose any medical conditions, instead encouraging people she suspects of thyroid problems to see a doctor. She has received a rush of unwanted attention online. After one particularly viral comment, she woke up to dozens of strangers messaging her pictures of their necks for diagnosis. She changed her username in response – which is where the PickleFart moniker originated.
“It’s kind of funny, but it’s also kind of sad,” Tuomi said. “It shows how broken the American healthcare system is that people are seeking out medical advice on social media apps.”
Finding a diagnosis in a mess of misinformation
Craig Mittleman, director of the department of emergency services at Lawrence + Memorial hospital in Connecticut, said in the last five years of his 36-year career practicing medicine, he has seen a sharp increase in patients coming in with internet-influenced diagnoses – for better and for worse.
“In some ways, it’s allowed patients to feel empowered to ask certain questions and be more informed,” he said. “But I also find that we are often, as emergency physicians, spending a lot of time debunking information that patients present, which they’ve procured through social media.”
Patients’ reliance on online medical information can be an especially acute problem with deeply ingrained medical misinformation, such as patients who reject treatment outright because they don’t believe Covid-19 is real, which he said can completely “break down the relationship” between doctor and patient.
“Part of the problem is most patients and most lay folk don’t know how to distinguish between good information, actionable information and misinformation that could lead somebody astray,” he said.
Understanding strange symptoms and finding community
Research has shown women are more likely to research health information online compared to men, a phenomenon that has been attributed to gender inequities in the healthcare system. Anecdotally, many women discussing medical problems on TikTok say that they have been dismissed in formal medical settings before returning armed with knowledge from the platform.
Such was the case for Tori Mosser, a 23-year-old film-maker in Dallas, who posts candidly about her experiences with chronic illness, and who credits TikTok for a recent diagnosis.
“As much as I would love to say otherwise, it is very true that being a woman can contribute to being dismissed in healthcare settings,” she said. “I’ve been told I’m being dramatic, that I’m having an anxiety attack and that I need to calm down. It’s frustrating and it’s invalidating.”
Mosser had been documenting vomiting episodes on TikTok when a viewer direct messaged her suggesting her symptoms sounded similar to an illness a sibling had experienced: chronic appendicitis. When Mosser told her surgeon that an internet commenter offered a potential diagnosis, she said he brushed her off. Months later, Mosser was rushed into surgery. After her appendix was removed, the episodes ceased, and she strongly suspects the condition had been chronic all along.
She said after sharing her story, multiple people with similar symptoms have asked their doctors about possible appendicitis. For her, the saga underscored what she has learned from posting about chronic illness on TikTok: that finding community around health concerns is crucial, particularly for women.
“For me, it’s about spreading awareness – letting people know that there is help, there is treatment and there are people who understand, because sometimes simply just knowing there is someone else who relates makes all the difference.”
Lee has found this to be the case as well, as she has now turned to TikTok to find community surrounding an autoimmune disorder she was diagnosed with after her thyroid cancer battle.
“With chronic illness, or any condition where you look healthy on the outside, the world dismisses you because it’s an invisible illness,” she said. “I really rely on my feed as a place I can go for comfort and realize I’m not alone in my experiences.”
