VOICES FROM THE EPICENTRE OF THE EPIDEMIC
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.