TikTok Users Diagnose Chronic Illnesses with Help from Anonymous Commenters

A 31-year-old wedding baker from San Antonio, Texas, credits a TikTok commenter with helping her diagnose thyroid cancer. Malina Lee joined the platform in 2020 and was using it to pass the time and advertise her business when a commenter, known as 'PickleFart', pointed out that her neck looked asymmetrical in one of her videos.

The commenter, whose real name is Billie Jean Tuomi, suggested that Lee get her thyroid checked, and it turned out that she had thyroid cancer. Lee received treatment and was cancer-free less than a year later. Her oncologist was impressed that she had caught the illness so early, and Lee credits the anonymous commenter with saving her life.

The 'Thyroid Avenger'

Tuomi, who was diagnosed with thyroid cancer in 2012, has become known as the 'thyroid avenger' for her efforts in helping others diagnose thyroid problems. She scrolls through TikTok looking for signs of potential thyroid issues, such as visible asymmetry or enlargement in a user's neck, and gently comments on their videos to suggest that they get their thyroid levels checked.

Tuomi's efforts have led to at least four people being diagnosed with thyroid problems, including Lee. She is careful not to claim that she can diagnose medical conditions, but instead encourages people to see a doctor if they suspect that they may have a thyroid problem.

Lee has also started commenting on videos to help others diagnose thyroid problems, and has even helped one user get their enlarged thyroid removed. She says that it's a 'domino effect' of people helping each other, and that she is grateful to Tuomi for pointing out her own thyroid issue.

Finding a Diagnosis in a Mess of Misinformation

While TikTok can be a useful tool for diagnosing medical problems, it can also be a source of misinformation. Craig Mittleman, director of the department of emergency services at Lawrence + Memorial hospital in Connecticut, says that he has seen an increase in patients coming in with internet-influenced diagnoses, which can be both helpful and harmful.

Mittleman notes that patients are often empowered to ask questions and be more informed, but they can also be misled by misinformation on social media. He says that it's a problem that doctors are spending a lot of time debunking information that patients have found online, which can break down the relationship between doctor and patient.

Understanding Strange Symptoms and Finding Community

Research has shown that women are more likely to research health information online, and that they are often dismissed in formal medical settings. Tori Mosser, a 23-year-old film-maker, says that she was dismissed by her surgeon when she suggested that her symptoms might be related to chronic appendicitis, which was later confirmed after she was rushed into surgery.

Mosser credits TikTok with helping her find a diagnosis, and says that finding community around health concerns is crucial, particularly for women. She notes that it's about spreading awareness and letting people know that there is help and treatment available, and that there are people who understand what they're going through.

Lee has also found community on TikTok, particularly after she was diagnosed with an autoimmune disorder after her thyroid cancer battle. She says that it's a place where she can go for comfort and realize that she's not alone in her experiences, and that it's helped her to cope with her chronic illness.