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Tag: chronic fatigue

  • 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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  • Medium COVID Could Be the Most Dangerous COVID

    Medium COVID Could Be the Most Dangerous COVID

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    I am still afraid of catching COVID. As a young, healthy, bivalently boosted physician, I no longer worry that I’ll end up strapped to a ventilator, but it does seem plausible that even a mild case of the disease could shorten my life, or leave me with chronic fatigue, breathing trouble, and brain fog. Roughly one in 10 Americans appears to share my concern, including plenty of doctors. “We know many devastating symptoms can persist for months,” the physician Ezekiel Emanuel wrote this past May in The Washington Post. “Like everyone, I want this pandemic nightmare to be over. But I also desperately fear living a debilitated life of mental muddle or torpor.”

    Recently, I’ve begun to think that our worries might be better placed. As the pandemic drags on, data have emerged to clarify the dangers posed by COVID across the weeks, months, and years that follow an infection. Taken together, their implications are surprising. Some people’s lives are devastated by long COVID; they’re trapped with perplexing symptoms that seem to persist indefinitely. For the majority of vaccinated people, however, the worst complications will not surface in the early phase of disease, when you’re first feeling feverish and stuffy, nor can the gravest risks be said to be “long term.” Rather, they emerge during the middle phase of post-infection, a stretch that lasts for about 12 weeks after you get sick. This period of time is so menacing, in fact, that it really ought to have its own, familiar name: medium COVID.

    Just how much of a threat is medium COVID? The answer has been obscured, to some extent, by sloppy definitions. A lot of studies blend different, dire outcomes into a single giant bucket called “long COVID.” Illnesses arising in as few as four weeks, along with those that show up many months later, have been considered one and the same. The CDC, for instance, suggested in a study out last spring that one in five adults who get the virus will go on to suffer any of 26 medical complications, starting at least one month after infection, and extending up to one year. All of these are called “post-COVID conditions, or long COVID.” A series of influential analyses looking at U.S. veterans described an onslaught of new heart, kidney, and brain diseases (even among the vaccinated) across a similarly broad time span. The studies’ authors refer to these, grouped together, as “long COVID and its myriad complications.”

    But the risks described above might well be most significant in just the first few weeks post-infection, and fade away as time goes on. When scientists analyzed Sweden’s national health registry, for example, they found that the chance of developing pulmonary embolism—an often deadly clot in the lungs—was a startling 32 times higher in the first month after testing positive for the virus; after that, it quickly diminished. The clots were only two times more common at 60 days after infection, and the effect was indistinguishable from baseline after three to four months. A post-infection risk of heart attack and stroke was also evident, and declined just as expeditiously. In July, U.K. epidemiologists corroborated the Swedish findings, showing that a heightened rate of cardiovascular disease among COVID patients could be detected up to 12 weeks after they got sick. Then the hazard went away.

    This is all to be expected, given that other respiratory infections are known to cause a temporary spike in patients’ risk of cardiovascular events. Post-viral blood clots, heart attacks, and strokes tend to blow through like a summer storm. A very recent paper in the journal Circulation, also based on U.K. data, did find that COVID’s effects are longer-lasting, with a heightened chance of such events that lasts for almost one full year. But even in that study, the authors see the risk fall off most dramatically across the first two weeks. I’ve now read dozens of similar analyses, using data from many countries, that agree on this basic point: The greatest dangers lie in the weeks, not months, after a COVID infection.

    Yet many have inferred that COVID’s dangers have no end. “What’s particularly alarming is that these are really life-long conditions,” Ziyad Al-Aly, the lead researcher on the veterans studies, told the Financial Times in August. A Cleveland Clinic cardiologist has suggested that catching SARS-CoV-2 might even become a greater contributor to cardiovascular disease than being a chronic smoker or having obesity. But if experts who hold this assumption are correct—and the mortal hazards of COVID really do persist for a lifetime (or even many months)—then it’s not yet visible at the health-system level. By the end of the Omicron surge last winter, one in four Americans—about 84 million people—had been newly infected with the coronavirus. This was on top of 103 million pre-Omicron infections. Yet six months after the surge ended, the number of adult emergency-room visits, outpatient appointments, and hospital admissions across the country were all slightly lower than they were at the same time in 2021, according to an industry report released last month. In fact, emergency-room visits and hospital admissions in 2021 and 2022 were lower than they’d been before the pandemic. In other words, a rising tide of long-COVID-related medical conditions, affecting nearly every organ system, is nowhere to be found.

    If mild infections did routinely lead to fatal consequences at a delay of months or years, then we should see it in our death rates, too. The number of excess deaths in the U.S.—meaning those that have occured beyond historic norms—should still be going up, long after case rates fall. Yet excess deaths in the U.S. dropped to zero this past April, about two months after the end of the winter surge, and they have stayed relatively low ever since. Here, as around the world, overall mortality rates follow acute-infection rates, but only for a little while. A second wave of deaths—a long-COVID wave—never seems to break.

    Even the most familiar maladies of “long COVID”—severe fatigue, cognitive difficulties, and breathing trouble—tend to be at their worst during the medium post-infection phase. An early analysis of symptom-tracking data from the U.K., the U.S., and Sweden found that the proportion of those experiencing COVID’s aftereffects decreased by 83 percent four to 12 weeks after illness started. The U.K. government also reported much higher rates of medium COVID, relative to long COVID: In its survey, 11 percent of people who caught the virus experienced lingering issues such as weakness, muscle aches, and loss of smell, but that rate had dropped to 3 percent by 12 weeks post-infection. The U.K. saw a slight decline in the number of people reporting such issues throughout the spring and summer; and a recent U.S. government survey found that about half of Americans who had experienced any COVID symptoms for three months or longer had already recovered.

    This slow, steady resolution of symptoms fits with what we know about other post-infection syndromes. A survey of adolescents recovering from mononucleosis, which is caused by Epstein-Barr virus, found that 13 percent of subjects met criteria for chronic fatigue syndrome at six months, but that rate was nearly halved at one year, and nearly halved again at two. An examination of chronic fatigue after three different infections—EBV, Q fever, and Ross River virus—identified a similar pattern: frequent post-infection symptoms, which gradually decreased over months.

    The pervasiveness of medium COVID does nothing to negate the reality of long COVID—a calamitous condition that can shatter people’s lives. Many long-haulers experience unremitting symptoms, and their cases can evolve into complex chronic syndromes like ME/CFS or dysautonomia. As a result, they may require specialized medical care, permanent work accommodations, and ongoing financial support. Recognizing the small chance of such tragic outcomes could well be enough to make some people try to avoid infection or reinfection with SARS-CoV-2 at all costs.

    But if you’re like me, and trying to calibrate your behaviors to meet some personally acceptable level of COVID risk, then it helps to keep in mind the difference between the virus’s medium- and long-term complications. Medium COVID may be time-limited, but it is far from rare—and not always mild. It can mean a month or two of profound fatigue, crushing headaches, and vexing chest pain. It can lead to life-threatening medical complications. It needs recognition, research, and new treatments. For millions of people, medium COVID is as bad as it gets.

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    Benjamin Mazer

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