“No, you are not crazy, lazy, or faking,” the Pinterest post says. “Just count…”
The link leads to a post on the website HypothyroidMom.com called “300 hypothyroidism symptoms: count how many you have.” The post, which lists 307 symptoms, details nearly everything that could go wrong with the human body. Weight gain. Bloating. Dry skin. Pressure in ears. Athlete’s foot. Cold hands. Chest pain. High cholesterol. ADD/ADHD. Schizophrenia.
With more than 1.1 million likes on Facebook, Hypothyroid Mom — which is run by Dana Trentini, a former talent development specialist at JPMorgan Chase and high school teacher, according to her LinkedIn — is one of the most prominent figures in a community that spans Facebook, Instagram, Pinterest, Etsy, and Amazon, made up of people who have either been diagnosed with hypothyroidism or believe they should be. (Trentini did not respond to multiple requests for comment.)
What sets these patients apart from those who suffer from poorly understood diseases like chronic fatigue syndrome or chronic Lyme disease — which also have huge online communities around them — is that the standard medical treatments for hypothyroidism are typically highly effective. According to the American Thyroid Association, hypothyroidism — a condition in which the thyroid gland does not secrete enough hormones — can’t be cured, “but in almost every patient, hypothyroidism can be completely controlled.” Dr. Steven Hodak, an endocrinologist at NYU Langone, told BuzzFeed News that 85% to 90% of patients see their symptoms improve by taking one levothyroxine hormone pill (T4), while another 10% to 15% take a different hormone pill (T3).
However, since hormones can affect nearly every major bodily function, one person’s symptoms could be almost anything. As a result, the flourishing communities of people who feel alienated by traditional medicine are willing to try alternative treatments. And online platforms provide a space not only to these communities, but also to the alternative medicine merchants eager to cash in.
Instagram user @theinvisiblehypothyroidism, who has over 12,000 followers, posts about how thyroid patients are “not easily understood by those around them” and “not taken seriously.”
“Most people think it’s an easily treated condition, when in reality, it is none of these things for many patients,” she wrote in one post. “We’re not hypochondriacs, it really does cause us many symptoms! Yes, for some thyroid patients they do OK on standard thyroid medication but for many, they still struggle with daily symptoms and living with this diagnosis.”
Rachel Hill, who runs @theinvisiblehypothyroidism, declined to comment.
There’s no easy way for platforms to contend with the proliferation of hypothyroid-related content, because posts about real symptoms often go hand-in-hand with the promotion of miracle treatments or misleading information. The end result is that almost all information stays up unless it’s specifically flagged to a platform.
For instance, Hypothyroid Mom posts lots of content that validates people’s symptoms, like a photo that read, “Your symptoms are not all in your head oh hell no.” But she also attributes an extensive list of symptoms to hypothyroidism by sharing articles with titles such as “fixing your thyroid can also fix your hands” and “low thyroid and my darn feet.” But medical professionals say that a combination of lab testing and symptom evaluation is necessary to treat hypothyroidism effectively, since a patient could easily have a different condition that’s not hypothyroidism.
“It’s really not useful or really accurate to think of hypothyroidism as being defined by any specific symptoms, because it really depends on the severity of the hypothyroidism,” Hodak said. “If somebody looks the part and has a lot of symptoms, you can certainly suspect that they’re hypothyroid. But you have to confirm it with a lab test because what if they have adrenal insufficiency? Or what if they have narcolepsy, or what if they have sleep apnea?”
Yet many of the people in the online hypothyroid community insist that they have hypothyroidism because their symptoms persist, although their bloodwork is normal.
“I’m so sick of being exhausted all the time and being told my bloodwork is normal,” one person recently commented on a Hypothyroid Mom post.
“I’m reading this with tears flowing down my face,” another person commented. “There are days I feel as if I want to be alone. I don’t want to be a wife, mother, caregiver, friend, aunt. I just want to slip away.”
Hodak emphasized that symptoms can vary wildly depending on the person and case.
“In the very classic and profound presentations of all these diseases, there are sort of hallmark features that might steer us this way versus that way,” Hodak said. “But at some level, until people are…until they have a full-blown manifestation of a disease, oftentimes the symptoms are very nonspecific.”
Filling that void are those peddling unproven treatments, like powders, capsules, and mixtures of sea moss, bladder wrack, and ashwagandha root. There’s no single way that people come across these treatments, since the hypothyroid community exists across various platforms. But many people on Instagram and merchants on Etsy reference the late Honduran herbalist known as “Dr. Sebi” — who was not a doctor, and whose real name was Alfredo Bowman — as a source of their belief that sea moss and bladder wrack can treat hypothyroidism.
In 1988, a New York court found Bowman, who did not have a license to practice medicine in New York, guilty of consumer fraud. In its ruling, the court said that his then–company, the Fig Tree Products Company, falsely claimed it could “cure, mitigate, or […] relieve” medical conditions. Bowman died in 2016, but Dr. Sebi’s Cell Food continues to sell powders and supplements in his name.
The cost of these treatments varies wildly. Sixteen ounces of sea moss goes for about $20 on Amazon and Etsy. One hundred capsules of bladder wrack or ashwagandha can cost between $10 and $20. A 16-ounce bottle of “Seamoss Bladderwrack Burdock Gel” is being sold on Etsy for $55.
Some of the reviews for these products are positive, but others claim that the products were moldy, slimy, or smelled like plastic or bleach. Many people said that the packages only came partially filled. For instance, a package of “Premium Irish Moss Superfood,” an $11 product which is labeled “Amazon’s Choice,” has dozens of reviews which claim that the sea moss smelled noxious and that people who bought it were too afraid to consume it.
“As soon as I opened the package I was overwhelmed [by] the smell of plastic almost smelt like new shoes, tiers or even a new plastic Barbie doll,” one reviewer said. “There is white powder that looks like sand but it instantly disappeared in water. No sand to rinse off. It feels rubber. I’m sorry I just have a hard time believing this is authentic. There should be strict regulations on amazon to ensure the safety of its customers. I will not consume this plastic imitation moss.”
On Etsy and Amazon, merchants sell products which they promise will treat or alleviate hypothyroidism. The top result in an Etsy search for “hypothyroidism” was, until recently, a bag of sea moss and bladder wrack, which was removed after a reporter contacted them about it.
Sea moss is a food thickener with no proven medical value. Bladder wrack is a low-calorie root, with “insufficient evidence” of affecting thyroid problems. Consuming large amounts of either thing probably won’t hurt you, but it almost definitely won’t cure or treat hypothyroidism. Ashwagandha root can improve thyroid function in some people according to the US Library of Medicine, but patients whom doctors have placed on standard hypothyroid treatments should avoid ingesting it.
However, all of these supplements are commonly promoted online. Hypothyroid Mom has promoted ashwagandha as a thyroid supplement. On a guest blog on her website in 2016, nutritionist John Axe recommended ashwagandha as the “top supplement” for hypothyroidism. Axe also sells several types of powder supplements.
Hodak said that “natural remedies” for medical conditions can often have a positive psychological effect on people experiencing hypothyroidism. However, there’s a risk when people interfere with or undermine a doctor’s prescribed treatments.
“Naturally occurring substances, plants, those sorts of things have potential medicinal benefits and sometimes risks,” Hodak said. “My attitude is usually as long as it’s not something that we know is going to cause a problem, if it makes the patient feel good, and they want to do it, go ahead, it’s not going to hurt. But it’s not going to replace thyroid hormone.”
But those who sell alternative hypothyroid supplements advertise them as having nearly supernatural quality. Dozens of listings for sea moss, bladder wrack, and ashwagandha root on Etsy claim that the elements can treat a variety of ailments. One listing for sea moss and bladder wrack powder, for instance, claims its powers include: “soothing the kidneys, as a blood purifier, relieving the lymphatic system, rheumatism, gout, GI tract disorders, stomach ailments, constipation, catarrh, fever, infection, fluid retention and skin problems.”
Every platform has a different way of dealing with medical misinformation. Facebook and Instagram, for instance, claim that posts with “exaggerated or sensational” heath claims will get surfaced less often on people’s News and Discovery Feeds.
According to Facebook’s terms of service, posts with “exaggerated or sensational” heath claims will surface less often on people’s News Feeds. Instagram’s terms of service does not mention how exaggerated or sensational health claims are treated in the Explore tab.
“If a member of our fact-checking program marks a health-related hoax as false, we will take steps to significantly reduce how many people see that hoax on Instagram and Facebook,” a Facebook spokesperson told BuzzFeed News.
A Pinterest spokesperson told BuzzFeed News that its health misinformation policy prohibits “false cures for terminal or chronic illnesses.” Content found to be in violation should be taken down entirely.
“The US National Center for Health Statistics defines hypothyroidism as a chronic disease, so we would remove anything suggesting sea moss or bladder wrack is a cure or treatment for hypothyroidism if we find it or if someone reports it to us through our Pin report feature,” the spokesperson said. “In addition, we don’t allow medical misinformation in ads, so an ad claiming to cure or treat hypothyroidism would not be allowed to run on Pinterest.”
Etsy and Amazon instruct third-party sellers to follow national laws and not sell illegal merchandise. But since hypothyroid treatments sold on their platforms are often categorized as “supplements,” which don’t require FDA approval to be sold, it’s legal to sell most hypothyroid treatments.
An Etsy spokesperson told BuzzFeed News that it could not comment on specific items or sellers.
An Amazon spokesperson told BuzzFeed News, “All sellers are required to follow our selling guidelines and those who do not will be subject to action, including potential removal of their account.”
Hodak said he recognizes people’s urge to self-advocate for their medical wellbeing, but that there’s no alternative medical miracle for hypothyroidism.
“[Americans] are always looking for that one thing that’s going to be a paradigm-shifting supplement or something that they can take,” Hodak said. “And there are precious few things like that out in the world. It really reflects a bias that I think — at least in this Western culture that we have — where somehow there’s a thing that’s like a magic bullet. And there really aren’t any.”