VOICES FROM THE EPICENTRE OF THE EPIDEMIC

Women's Health (South Africa) - - WEIGHT LOSS -

The best way to un­der­stand the con­trary pieces of this knotty is­sue? Straight from the women grap­pling with it

“It felt like I was liv­ing in a body that wasn’t mine.”

Dur­ing her mid-twen­ties, Kait­lyn Ho­ever felt in­creas­ingly de­pressed and ex­hausted. “I didn’t want to see my friends or re­turn their texts,” re­calls the now-31-year-old en­tre­pre­neur. She was gain­ing weight even though she worked out re­li­giously and was metic­u­lous about her eat­ing habits. Kait­lyn didn’t have a reg­u­lar doc­tor to dis­cuss her symp­toms with, so it wasn’t un­til she was 26, and Googling them, that she be­gan to sus­pect she had an un­der­achiev­ing thy­roid. She vis­ited a GP, but he was dis­mis­sive, say­ing she just needed to eat less and work out more to lose weight. Kait­lyn begged him to test her thy­roid and her TSH was 20. An­other physi­cian later said that, based on her symp­tom his­tory, she likely had hy­pothy­roidism for at least five years. Kait­lyn’s ex­pe­ri­ence is far from rare. Hy­pothy­roidism’s symp­toms are of­ten shrugged off, which can have dele­te­ri­ous re­sults. Left un­treated, the con­di­tion can raise your bad LDL choles­terol, in­crease your risk for heart dis­ease and in­fer­til­ity and in rare cases, lead to a life-threat­en­ing con­di­tion known as a myxedema coma. Kait­lyn started tak­ing med­i­ca­tion just over two years ago. She’s since lost much of the weight and her emo­tional state and en­ergy lev­els have mostly re­turned to nor­mal. Still, it’s taken sev­eral years to ar­rive at a treat­ment plan that works. Find­ing the right dose is of­ten a dance be­tween symp­toms and side ef­fects, says Surks.

“I wanted it to be a magic bul­let, but it back­fired.”

On top of reg­u­lar light-head­ed­ness and in­ces­sant thirst, 24-year-old Amy Kin­caid’s* first clue some­thing wasn’t quite right was her wardrobe. In the be­gin­ning of au­tumn, Amy wore her down jacket all day at the of­fice while her col­leagues were in T-shirts. Amy’s en­docri­nol­o­gist tested her TSH level; it was 5.7, a touch out of the nor­mal range. Her thy­roid wasn’t to­tally ka­put, just mildly out of whack. En­docri­nol­o­gists have squab­bled over whether to treat this so-called sub­clin­i­cal hy­pothy­roidism, which af­fects around five per­cent of women, be­cause there’s no de­fin­i­tive point at which thy­roid dys­func­tion be­gins to trig­ger symp­toms. In other words, a woman with a bor­der­line TSH (typ­i­cally some­where be­tween 4.5 and 10) could ex­pe­ri­ence the same – or more, or less – fa­tigue as some­one with an ex­tremely high one. She could see three dif­fer­ent en­docri­nol­o­gists and get three dif­fer­ent opin­ions. (Un­less a woman is preg­nant or think­ing about it be­cause hy­pothy­roidism dur­ing preg­nancy is linked to a higher risk for mis­car­riage and pre­ma­ture birth. Most moms can stop treat­ment af­ter the baby is born.) Some doc­tors im­me­di­ately pre­scribe syn­thetic hor­mones to pre­vent full-blown hy­pothy­roidism, though stud­ies show that only hap­pens in two to five per­cent of peo­ple who start at the sub­clin­i­cal point. Oth­ers dole out meds to ward off fu­ture car­dio­vas­cu­lar prob­lems, but the re­search there is de­cid­edly mixed and the drugs them­selves can slightly in­crease the risk for car­diac ar­rhyth­mia (when the heart beats er­rat­i­cally), as well as bone loss. And then there are en­docri­nol­o­gists who do... Noth­ing. One rea­son: nearly 40 per­cent of peo­ple with bor­der­line TSH lev­els will see them in­ex­pli­ca­bly re­vert to nor­mal within a few years with­out any in­ter­ven­tion, says Surks. (He sus­pects the tem­po­rary el­e­va­tion may be the work of harm­less vi­ral in­fec­tions.) But even more com­pelling is that stud­ies show meds sim­ply don’t ease symp­toms for peo­ple in this group. They may ac­tu­ally lower a pa­tient’s TSH to a point where she starts ex­pe­ri­enc­ing side ef­fects, such as in­som­nia or hot flashes. “We re­ally have no good ev­i­dence that treat­ing peo­ple with bor­der­line TSH el­e­va­tions of­fers any ben­e­fit be­yond what we see with a placebo,” says Dr David Cooper, di­rec­tor of the Thy­roid Clinic at Johns Hop­kins Hos­pi­tal in the US. With so much con­flict, most docs err on the side of cau­tion. Con­sider this: the syn­thetic thy­roid hor­mone levothy­rox­ine is the top-pre­scribed med­i­ca­tion in the US, with around 121 mil­lion pre­scrip­tions filled an­nu­ally. Amy was given the drug and found it helped her symp­toms, but it came with an un­wanted and yet fairly com­mon side ef­fect: se­vere anx­i­ety. So less than a year af­ter start­ing the meds, she came off them. She’s a rar­ity in this re­gard. Ac­cord­ing to Surks, once a doc­tor pre­scribes thy­roid med­i­ca­tion, that pa­tient of­ten stays on it for life. That’s why the best ap­proach to a mid­dle-of-the-road TSH is, well, mid­dle-of-the road. “It’s rea­son­able to ask your doc­tor to fol­low your TSH lev­els ev­ery six to 12 months, to see whether they rise fur­ther or sta­bilise be­fore treat­ing,” says Dr An­to­nio Bianco, an en­docri­nol­o­gist.

“I felt like a zom­bie, but my doc­tor wouldn’t treat me.”

Julie Arnold*, a 30-year-old post­grad stu­dent, strug­gled with clas­sic symp­toms of hy­pothy­roidism – fa­tigue and an in­ex­pli­ca­ble 27kg weight gain – for sev­eral years. Yet three doc­tors re­fused to treat her be­cause her TSH lev­els were 1.067, well within the nor­mal range. She was dev­as­tated af­ter each visit. Yes, you read that right: she was crushed doc­tors said she didn’t have hy­pothy­roidism. And she’s not the only one. “There is a lot of mis­in­for­ma­tion out there, spread by both pa­tients and some doc­tors, that symp­toms, like weight gain or fa­tigue, which are so com­mon in the gen­eral pop­u­la­tion, must be ex­plain­able by a thy­roid prob­lem,” says Cooper. But re­search shows weight plays a less sig­nif­i­cant role in thy­roid is­sues than you might think. “Even in the most se­vere

cases, we only see gains of about five to 10 ki­los,” says Cooper. (Sub­clin­i­cal hy­pothy­roidism is un­likely to spur any weight gain.) Fa­tigue is sim­i­larly blurry; an un­der­ac­tive thy­roid can cause a lack of men­tal clar­ity, but de­pres­sion, anx­i­ety or menopause are more likely cul­prits. Yet the mis­con­cep­tions per­sist, driv­ing women to seek test­ing. Cooper es­ti­mates pri­mary-care providers see at least as many pa­tients who think they have thy­roid prob­lems but don’t, as those who gen­uinely do. “If the re­sult is neg­a­tive, pa­tients will say, ‘Well, if it’s not my thy­roid, what is it?’” he says. “Fre­quently, we have to say, ‘I don’t know.’” That can be hard to hear. “Of­ten­times I tell a woman she doesn’t have hy­pothy­roidism and the re­ac­tion is un­ex­pected. While many are re­lieved, some start cry­ing,” says Bianco. And then there are women who flat-out refuse to ac­cept that a wonky thy­roid isn’t be­hind their strug­gles. Blogs writ­ten by pa­tients who be­lieve they have a thy­roid prob­lem, even though lab tests say oth­er­wise, have huge fol­low­ings; the most pop­u­lar racks up 2.8 mil­lion page views each month (for com­par­i­son, the Amer­i­can Thy­roid As­so­ci­a­tion has just 700 000 page views). Though the claims made on these sites are of­ten anec­do­tal and lack med­i­cal ev­i­dence, mil­lions of women take them as gospel and visit doc­tor af­ter doc­tor un­til they find some­one who will give them med­i­ca­tion, of­ten in high doses, says Bianco. Our ex­perts be­lieve these doc­tors are prey­ing on women who feel sick and dis­cour­aged. Of­ten, they run pri­vate clin­ics and charge high prices to per­form lots of tests and pre­scribe lots of meds, but don’t ac­cept in­surance, says Cooper. The fourth physi­cian Julie vis­ited agreed to treat her. She says she’s less tired now, but her weight hasn’t shifted much and her doc­tor is still work­ing to find a dose that will ease her symp­toms with­out trig­ger­ing in­som­nia and numb­ness in her arms and legs (other com­mon side ef­fects of the drug). And so she waits.

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