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  • Think Twice Before Testing Your Hormones at Home

    Think Twice Before Testing Your Hormones at Home

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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.

    Rice’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 & 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.”

    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.

    Like 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).

    At-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.

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    Ali Pattillo

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  • Please Don’t Call My Cervix Incompetent

    Please Don’t Call My Cervix Incompetent

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    If you haven’t been pregnant, you’d be forgiven for thinking the language of pregnancy is all baby bumps, bundles of joy, and comparisons to variously sized fruits. But in the doctor’s office, it’s a different story. The medical lexicon for moms-to-be can be downright harsh. Case in point: the phrase geriatric pregnancy, which, until recently, was used to refer to anyone pregnant after their 35th birthday.

    This unfortunate term is thought to stem from a concept that dates back to the 1970s, when amniocentesis, a procedure to screen for genetic abnormalities, was becoming routine. That year, the National Institutes of Health identified 35 as the age at which the risk that the test would harm the fetus was roughly equal to the chance of a fetus being born with Down’s syndrome. In the four-plus decades since, advancements in screening technology have made that calculation essentially obsolete—and the idea that your 35th birthday is some sort of cliff-of-no-return absurd. Moms, for their part, always hated the phrase: When Jamila Larson, a 49-year-old mother of two in Hyattsville, Maryland, was called “geriatric” by a midwife in 2011, “it felt like a gut punch,” she told me.

    Though you’ll still hear it occasionally, this term has (thankfully) been on its way out for a while. One reason is changing demographics. As more and more women give birth after turning 35—in 2020, about one in five babies in the United States was born to a mom who had passed that birthday—labeling them as particularly “old” no longer makes sense. Last August, the American College of Obstetricians and Gynecologists (ACOG) announced that its preferred terminology is now “pregnancy at age 35 years or older”—or, even better, that doctors and researchers should simply indicate patients’ age in five-year increments starting from the age of 35.

    This is how progress works: When a medical term outlasts its usefulness, we thank it for its service and move on. So it may surprise you to learn that a litany of dubiously appropriate and medically inaccurate words are still used to describe pregnancy and childbirth. Over the past decade, the field of medicine has acknowledged that language has the power to perpetuate bias among doctors, and worked to scrub its vocabulary of such terms, including schizophrenic (which reduces a person to a stigmatized disease), drug abuser (which reduces a person to their addiction), and sickler (a derogatory term for someone with sickle-cell disease). And yet, doctors continue to describe women’s bodies using charged terms such as hostile uterus, incompetent cervix, and habitual aborter—words that arguably sound worse than the now-shunned geriatric pregnancy. Why do some words evolve, while others insist on haunting moms’ medical charts like ghosts of medicine past?

    [Read: The culture war over ‘pregnant people’]

    Geriatric pregnancy got a spurt of publicity in 2021, when the makers of the fertility and motherhood app Peanut turned their attention to the minefield of pregnancy language. After a video of a distraught woman whose doctor told her she would be “geriatric” if she were to get pregnant garnered attention on the app, Peanut launched a campaign to come up with more neutral-sounding alternatives to existing medical language. That April, they released a glossary of proposed replacements. Still, more attention from the public doesn’t always translate into institutional action: Although 20,000 people have downloaded Peanut’s glossary, there hasn’t been any official movement within medicine to do away with the original terms.

    Across the U.S., doctors are still doling out diagnoses that sound not only archaic, but downright weird. Many of these terms are enshrined in the global catalog of diseases that doctors use to report procedures to insurance companies, known as the ICD-11. The latest version of that glossary, released in 2022, still includes the phrase elderly primigravida, which is basically a synonym for geriatric pregnancy. In 2016, during her second pregnancy, Larson’s notes read “elderly multigravida”—meaning she was both over 35 and had been pregnant before.

    Or consider incompetent cervix, a term that is in both the ACOG dictionary and the ICD-11. Really, it means a pregnant person’s cervix has dilated before the pregnancy is complete, which can lead to premature birth or miscarriage. Meena Khandelwal, an ob-gyn and the director of research for obstetrics and gynecology at Cooper University Health Care in Camden, New Jersey, told me she avoids using the phrase in front of patients (she sometimes uses weak cervix instead, though she isn’t sure that it’s much better). But because incompetent cervix is entrenched in insurance codes and her hospital’s record-keeping system, the phrase is likely to show up in patients’ notes anyway.

    [Read: She got pregnant. His body changed too.]

    To be sure, communicating that the cervix has opened early is crucial; it prompts doctors to monitor the situation using ultrasound, to temporarily sew the cervix closed, or to try another treatment. Providers need to be able to inform one another about patients quickly and clearly; one could argue that is a much more important function of medical jargon than protecting patients’ feelings. The point of language evolution is not to make words so gentle that they become meaningless.

    But in many cases, the existing language is less clear and precise than gentler alternatives. For example, failure to progress—a general term meaning that labor has lasted longer than expected—says nothing about the reason the labor is slow. And calling a patient “geriatric” offers less information than simply stating whether she is in her 30s, 40s, or 50s. The outdated words even have the potential to worsen patient outcomes: a 2018 study on physician bias found that when doctors read stigmatizing language in a patient’s charts, they tended to have more negative attitudes toward the patient and treat their pain less aggressively. Besides, “incompetent” is a strange way to describe whether a cervix is open or closed. It makes it sound like this organ should be worried about its next annual review.

    This odd quality unites many pregnancy-related terms: They make it sound as if the pregnant person, or their body part, could have chosen a different path. When you are told your uterus is being “hostile” or are accused of “failure to progress,” it’s hard not to feel like you’ve somehow failed the assignment. “It sends a message of ‘You could be normal, but you’re not. You’re not working with us here,’” says Kristen Syrett, an associate professor of linguistics at Rutgers University. Even geriatric pregnancy, which doesn’t explicitly apply blame, seems to suggest that a mom-to-be has knowingly brought more risk upon her unborn child by choosing pregnancy “later” in life.

    [Janice Wolly: My first pregnancy]

    Many moms told Peanut that the most devastating label they encountered was habitual aborter. That term usually refers to someone who experiences multiple miscarriages before 20 weeks of pregnancy, a condition that affects 1 to 2 percent of women. (Its cousin is spontaneous abortion, which means such a miscarriage has happened once). From a purely medical perspective, abortion refers to any procedure that terminates a pregnancy, and includes procedures to empty the womb after a miscarriage. But in layman’s terms, it has come to mean a chosen termination of a pregnancy. That, plus the implication that aborting is a bad habit you can’t seem to break, made the term feel particularly inappropriate. “It’s really horrific if you think about it,” says Somi Javaid, an ob-gyn and the founder of the health-care company HerMD, who consulted on the Peanut project.

    This sense of blame becomes more acute when you consider that for many people, reproductive organs are intimately tied to a sense of identity and self-worth—at least compared with, say, the kidneys. In the context of wanting a child, it’s difficult to hear that your uterus is “hostile” or your cervix is “incompetent” without thinking that those terms apply to your whole self. Even physicians can be taken aback: When Javaid was in her 20s, her own doctor deemed her “infertile” in her notes on account of her “old” uterus—meaning that its lining had thinned, a side effect from a fertility medication she was taking. “It felt like being slapped in the face,” she told me. “The impact of the word was not muted by my knowledge at all.”

    Medical terms can, and do, change. But usually the field is responding to larger shifts in the culture, rather than leading the charge. That’s what happened with the phrase pregnant women, which organizations including the ACLU and the CDC have been incrementally phasing out in favor of pregnant people, a term that has sparked vigorous debate about inclusive language and feminism. Last February, ACOG followed suit, announcing that it would “move beyond the exclusive use of gendered language” to better encompass the fact that people of all genders can become pregnant.

    [Helen Lewis: Why I’ll keep saying ‘pregnant women’]

    With geriatric pregnancy, the change was likely more bottom-up, starting with doctors themselves. After all, for many, it was personal: The length and intensity of medical training increases the odds that doctors will have children later than other women—that they will be, in their own language, geriatric moms, says Monica Lypson, a vice dean at Columbia University’s medical school who researches equity and inclusion. Lypson was deemed “geriatric” when she was pregnant at age 36—a choice of words she found “jarring” as a patient.

    Perhaps because incompetent cervix, habitual aborter, and the like refer to conditions that aren’t so common, many providers don’t realize just how hurtful they can be. Ariel Lefkowitz, an internal-medicine physician who cares for patients with pregnancy complications in Toronto, told me that he used to think of failure to progress the same way as he thought of kidney failure or heart failure. He didn’t notice the negative connotations until his wife, Sarah Friedlander, started training to be a birth educator and pointed them out. Now he sees that “it’s a lot more loaded, it’s a lot more personal,” he said.

    That realization pushed him to think harder about the bias embedded in medical language in other fields, such as failure to cope. “We’re so medicalized and supposedly neutral and in this clinical environment,” said Lefkowitz, who in 2021 co-wrote an editorial in the journal Obstetric Medicine on the importance of inclusive language in obstetrics. “It’s very easy to become numb to the ridiculous ways in which we speak.”

    The outdated terms that are currently stuck in the ICD-11, doctors’ offices, and the pages of medical journals may yet change. More doctors are recognizing that how patients perceive their words can have real impacts on health outcomes, says Julia Raney, a primary-care provider for adolescents who has created workshops on using mindful language in clinical settings. Accordingly, medicine is moving toward more person-centered care, including a focus on concrete risks rather than on blame and stereotypes. For instance, in her work with teens, Raney will note that they have a BMI in the 95th percentile rather than refer to them as simply “obese.” The goal is not to shield the patient from reality, but to better define their medical needs. Like ACOG’s move to designate moms as “35–39” or “40–44” rather than “of advanced maternal age,” this has the double benefit of being both less judgmental and more medically precise.

    [Anya E. R. Prince: I tried to keep my pregnancy secret]

    Doctors also have new reasons to be careful with their language. Since April 2021, an “open notes” law has given patients the right to freely and electronically access just about everything their doctors write about them. While the rule is still largely unknown to patients, open notes can make doctors more conscious (and, sometimes, anxious) about how what they write could affect their patients. “I think we’re all aware of that when we write anything,” Steve Lapinsky, an editor in chief of the journal Obstetric Medicine, told me. This increased transparency, he said, might just be the kick medicine needs to accelerate the pace of language change and do away with terms like incompetent cervix once and for all.

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    Rachel E. Gross

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