Name: Why Are So Many Women Being Told Their Hormones Are Out of Whack?
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Why Are So Many Women Being Told Their Hormones Are Out of Whack?

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Across the internet, a biological scapegoat has emerged for almost any mysterious medical symptom affecting women. Struggling with chronic fatigue, hair loss, brain fog, or dwindling sex drive? When no obvious explanation is at hand, an out-of-whack endocrine system must be to blame. Women have too much cortisol, vloggers and influencers say; or not enough thyroxine, or the wrong ratio of progesterone to estradiol. Social media is brimming with advice from self-proclaimed hormone “gurus” and health coaches; the tag #hormoneimbalance has racked up a staggering 950 million views on TikTok alone.Now dozens of start-ups promise to diagnose these imbalances from the comfort of your home. All it takes is the prick of a finger, a urine sample, or a vial of spit. You mail your sample out to a lab or run the test right in your kitchen, no co-pay or doctor visit required. A few days later, you receive a slick lab report and in some cases, a customized treatment plan to alleviate the depression, the insomnia, the feeling of just being off.Hormone imbalances can indeed contribute to an array of mental and physical symptoms, and hormone testing overseen by providers is a routine practice in medicine. Doing so remotely could theoretically improve women’s health and access to care. But despite their growing popularity and Amazon-like convenience, at-home hormone tests might cause more problems than they solve. Several women’s-health and hormone specialists told me that remote testing has long been useful for detecting pregnancy and tracking ovulation, but that few, if any, products now for sale have been consistently and rigorously proven to work for broader, newly advertised purposes. Testing kits are marketed as a way of helping women decipher puzzling symptoms or assess their fertility. But experts said that the technology—at least as it stands right now—is unreliable and could have the opposite effect, causing anxiety and confusion instead.Mindy Christianson, an ob-gyn and the medical director of the Johns Hopkins Fertility Center, told me that in the best-case scenario, an accurate home hormone test would lead its users to seek out necessary medical care for real medical problems. That’s what happened to Chrissy Rice, a 38-year-old in Georgia. From 2018 to 2022, Rice experienced a racing heart, panic attacks, skin rashes, fatigue, and stomach pain—but her blood work and cardiac tests kept coming back normal. Her doctor chalked her symptoms up to anxiety and prescribed an anxiolytic medication. Rice wasn’t satisfied, so she skipped the meds and ordered a $249 women’s-health-testing kit from a company called Everlywell. The kit, which uses saliva and finger-prick sampling, claims to check for abnormal hormone levels that may be keeping women from “feeling their best.” When Rice’s results lit up with four abnormal readings, she was “honestly relieved,” she told me: It gave her confidence that her symptoms hadn’t all been in her head. When she brought the results to another provider, he ordered more tests and eventually diagnosed her with an autoimmune condition called Hashimoto’s, for which she’s since been treated.Read: No one really understands how to treat menopauseRice’s success story relied on a lot of things going right: The test correctly flagged that something about Rice’s body chemistry had gone awry. (In this case, #hormoneimbalance really did apply.) In response, Rice used her results to advocate for appropriate care from a trusted health provider. But not everyone is so lucky.Tests like the one Rice took rely on processes that have not yet been rigorously validated in clinical trials. Where traditional hormone testing involves in-person blood draws followed by a highly sensitive and specific process called liquid chromatography–tandem mass spectrometry, home tests typically use dried urine, dried blood, or saliva sampling and a variety of techniques for measuring what’s in those samples. Women have, of course, been peeing on pregnancy-testing sticks since the 1980s. But these tests work well because the target hormone is present at relatively high levels, and should be found only during pregnancy. By contrast, hormones such as estradiol, testosterone, and progesterone—which are commonly targeted by this new wave of start-ups’ tests—regularly circulate throughout the body during various stages of a woman’s life, and are far trickier to measure using the low-volume samples involved in dried urine, dried blood, and saliva tests.A handful of small studies from the past three decades (many of which are funded by direct-to-consumer testing companies or conducted by their employees) suggest that these methods may be accurate. Jennifer Conti, an ob-gyn physician and professor at the Stanford University School of Medicine who advises the home-hormone-testing start-up Modern Fertility, told me that the company’s internal data, especially a study published in the peer-reviewed journal Obstetrics &amp; Gynecology in 2019, convinced her that its technology was useful for consumers who want to make more informed family-planning decisions. “But this idea that at-home testing is a godsend is not true,” Conti said. “It’s something that can be very helpful right now for a certain population of people to open the door and start a conversation.”Read: Can genetic counselors keep up with 23andMe?Other experts still aren’t confident that the tests are worthwhile. I asked Andrea Dunaif, a professor and specialist in endocrinology and women’s health at Mount Sinai, and Hershel Raff, an endocrinology and molecular-medicine expert at the Medical College of Wisconsin, to review the 2019 study. According to the study’s authors, their findings suggest that Modern Fertility’s finger-stick testing methods can be used interchangeably with traditional blood draws to measure fertility-related hormones. But Dunaif and Raff pointed out a laundry list of methodological issues that they argue limit the power of the findings: The type of assay used isn’t accurate for determining testosterone or estradiol levels in women. Researchers didn’t use appropriate hormone-level ranges to test accuracy. Samples were analyzed within 48 hours—a timeline that doesn’t match up with real-world shipping. (Current leadership and members of Modern Fertility’s clinical-research team declined multiple requests for comment. But Erin Burke, a clinical researcher who co-authored the study and is no longer working for Modern Fertility, said she stands by the data. She told me that the team’s work shows that these testing methods are accurate and precise.)Although many experts see minimal data to support their use, at-home tests can still be sold on account of a regulatory loophole: The FDA does not typically review what it calls “low risk general wellness” products before they hit the market. Some endocrinologists advise looking for home hormone tests with a certification from the Clinical Laboratory Improvement Amendments program (which is legally required for every direct-to-consumer testing company) or the College of American Pathologists, both of which ensure that a company’s labs maintain certain quality standards and undergo regular inspections. But Dunaif told me the certifications don’t guarantee precise results. She would never recommend that consumers use a currently available product for testing women’s sex steroid hormones remotely, she said, arguing that people will waste money and likely get information that is either “falsely reassuring or falsely distressing.” (Dunaif recently consulted for Quest Diagnostics, a large clinical-lab chain that doesn’t offer home hormone tests.)Charlotte, a New Jersey woman in her mid-30s, experienced the muddle of uncertain results firsthand. (I’m identifying her by only her first name to protect her medical privacy.) In 2021, Charlotte ordered a hormone panel from Modern Fertility after she began experiencing irregular periods. Her results showed an abnormally high level of prolactin, a hormone involved in ovulation and lactation, which made her think she might be infertile. Charlotte spent days scouring the internet for information while she waited to discuss the results with her doctor. When she finally showed her ob-gyn the Modern Fertility report, the doctor was incredulous. She basically dismissed the at-home results out of hand, and instead put Charlotte on progesterone. A few months later, Charlotte got pregnant.Read: Women aren’t just small menLike Rice’s home test, Charlotte’s helped her start a conversation with a trusted health-care provider and develop a plan. But Charlotte told me that the process wasn’t worth the panic-filled waiting game and desperate Googling. She wishes she’d skipped the home test and consulted her doctor first.Even when home hormone tests are accurate, their results are not diagnostic on their own. Drawing a straight line from hormone levels to a diagnosis is impossible without a medical history or physical exam; a user can’t predict her chances of pregnancy, for example, solely based on measurements of her fertility-related hormones. Nor would low levels of, say, estradiol or progesterone be enough to indicate endometriosis. Most people’s symptoms aren’t tied directly to a hormone imbalance, says Stephanie Faubion, the director of the Mayo Clinic Center for Women’s Health and the medical director of the North American Menopause Society. The more than 50 chemical messengers that coordinate all kinds of processes, including metabolism, reproduction, and mood, are constantly fluctuating and difficult to measure with a quick-hit hormone test, Faubion told me; people’s symptoms may be attributable to multiple interrelated factors. “Just checking a hormone level and saying Here’s your problem doesn’t serve women well,” she said. “It’s oversimplifying an issue."Some companies offer physician-reviewed reports, chat services, or phone calls with health providers to clarify any confusion. But Mary Jane Minkin, a gynecologist, menopause expert, and clinical professor at Yale School of Medicine, told me that those services might not be enough to curb misinterpretation, especially if test results aren’t reliable. Minkin worried that users may make drastic lifestyle changes or take off-the-shelf supplements. Christianson, of the Johns Hopkins Fertility Center, said that a growing number of her patients visit her clinic believing they are infertile or in premature menopause based on abnormal readings, when it’s not true. Others are rushing to freeze their eggs unnecessarily. And Faubion worries that providers, too, might use tests that aren’t evidence-based to make decisions about hormone therapy for patients. Some testing start-ups already offer personalized treatment plans and bioidentical hormone-replacement therapy via telehealth based on a user’s results.Other experts had the opposite concern: that women whose home-test results appear normal would miss out on crucial interventions. Christianson told me that she’s seen men skip out on necessary infertility evaluations based on at-home semen tests. Women could end up making similar mistakes. And Dunaif said that women experiencing chronically irregular periods might be falsely reassured by a home hormone test and delay needed treatment for endocrine disorders or polycystic ovarian syndrome (PCOS).Read: When missed periods are a metabolic problemAt-home-hormone-testing companies aim to solve a pressing demand for clarity and control as women address their medical needs. If women have been tempted to blame their hormones for anything that’s wrong, that’s at least partly because they aren’t receiving sufficient guidance from doctors. For decades, female patients have been dismissed, misdiagnosed, and mistreated by their health providers more than male patients have. Far less clinical research has been conducted on women than men, which can make health care a guessing game. A diagnosis for a hormone disorder such as PCOS or endometriosis typically takes consultations with several doctors across two to 10 years. Plus, traditional hormone testing can be expensive, and specialists are difficult to find. Only 1,700 reproductive endocrinologists and 2,000 menopause specialists practice in the United States; fertility clinics are rare outside cities.In an ideal world, women wouldn’t feel the need to circumvent their doctors to test their hormones at home. But as it stands, many are desperate for answers, and direct-to-consumer testing companies are responding to their frustrations. Someday, the tests might help point users to the appropriate specialist, provide useful information for women in medical deserts, or enable people to better monitor chronic conditions for which the relevant hormones are simple to measure. But until they are rigorously evaluated, women are left with imperfect choices.

Across the internet, a biological scapegoat has emerged for almost any mysterious medical symptom affecting women. Struggling with chronic fatigue, hair loss, brain fog, or dwindling sex drive? When no obvious explanation is at hand, an out-of-whack endocrine system must be to blame. Women have too much cortisol, vloggers and influencers say; or not enough thyroxine, or the wrong ratio of progesterone to estradiol. Social media is brimming with advice from self-proclaimed hormone “gurus” and health coaches; the tag #hormoneimbalance has racked up a staggering 950 million views on TikTok...

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Ali is a health and science reporter based in New York City. Previously, Ali covered health at CNN with Dr. Sanjay Gupta. She graduated from Columbia Journalism School in 2019 and Dartmouth College in 2017.

https://www.inverse.com/profile/ali-pattillo-19621088

Ali Pattillo

 Exploring the American idea through ambitious, essential reporting and storytelling. Of no party or clique since 1857. https://theatlantic.com

Why Are So Many Women Being Told Their Hormones Are Out of Whack?

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