I waited until I’d reached the sixth floor bathroom before I burst into tears. According to the endocrinologist I’d spent four years battling to see, my underactive thyroid was not only behind the sluggishness, the stomach issues and the weight gain I’d been experiencing for six plus years, but it was likely to be behind the month’s-long brain fog that had started to make me think I was quite possibly losing my mind and at the very least losing my spark.
That was just the start of the bombshells, it transpired. Had my GP not told me I should be on a higher dose of medication? Did I realise that my thyroid condition may well affect my chances of getting pregnant if I planned to have a baby in the next few years? And was I aware I was likely to have this autoimmune thing called Hashimoto’s disease, the predominant cause of hypothyroidism? “Hashi-what?” I repeated, not only completely overwhelmed but oddly embarrassed by the apparently gaping hole in my vocabulary.
“The bit that got me was when the consultant told me how lost I seemed,” I voice-noted a friend on my way home from the appointment — the latest in what I can only describe as a six-year rollercoaster with the whole thing, from years spent wondering what was behind my increasing fatigue, puffy face and ice-cold feet (yep, I’m that weirdo who wears socks in bed in July), to the never-ending see-saw of symptoms versus side-effects of the medication that’s meant to help.
“I think it was the kindness that made me cry,” I went on, my brain playing my a highlights (lowlights) reel of all of those years of self-doubt (maybe the low mood was just job stress) and self-judgement (maybe I did just need to do more exercise). “I guess it’s just the first time in all these years that anyone’s actually taken the time to piece all of this health stuff together and tell me I wasn’t being hysterical after all.”
If you’re wondering what on earth this thyroid thing I’m going on about is, you’re unlikely to be alone. It’s at this point that I’d like to hit you with a statistic about how under-funded or little-known-about thyroid conditions are, but the truth is there isn’t one — and that’s part of the problem. Despite one in 20 of us (and one in eight women) living with a thyroid problem or expected to develop one in our lifetime, very few of us are actually able to pinpoint where in the body the thyroid actually is (it’s that small butterfly-shaped gland at the front of the neck), let alone what it does (it produces thyroid hormones that control your metabolism) — if a straw-poll of friends and colleagues is anything to go by.
It turns out misunderstandings around the thyroid go far beyond my social circle. According to research by the University of Aberdeen, the average thyroid condition can take four-and-a-half years to be diagnosed, despite being picked up via a relatively quick blood test, with patients repeatedly being gaslit, patronised and having their concerns dismissed by GPs, often being told they are menopausal or depressed. “Patients on average do not feel that they are being heard by the medical profession and do not feel involved or empowered during their medical journey,” said the study, which was conducted by the university’s business school with the help of thyroid charities.
Despite one in 20 of us expected to develop a thyroid condition in our lifetime, very few people can pinpoint where the thyroid actually is
Not all thyroid patients face such agonising waits for diagnosis, of course, but the research certainly points to what many believe to be a concerning lack of awareness, given that the thyroid is widely considered the engine of the human body and controls our metabolism therefore affecting our heart rate, energy levels, digestion, body temperature and even how we think and feel. Not only that, but it’s often linked with other autoimmune issues such as coeliac disease and type 1 diabetes, and thyroid disorders can be known to negatively impact fertility.
“The implications can be far-reaching,” says Catia Montagna, one of the authors of the study, who calls the lack of awareness of thyroid conditions a “crisis” for women’s healthcare. With as many as 1.5 million women in the labour market potentially affected by thyroid conditions, she says the ripple effect isn’t just for thyroid sufferers and their loved ones, but societal. According to Montagna and her fellow researchers, medical gaslighting around thyroid conditions may well be fuelling gender inequality in the workplace and possibly even contributing to the gender pay gap, with women with undetected hypothyroidism paid five per cent less than women without a thyroid dysfunction.
So why the lack of awareness, then? That could have something to do with who is predominantly affected, says Julia Priestley, CEO of the British Thyroid Foundation, who calls hypothyroidism (an under-active thyroid) and hyperthroidism (an overactive one) examples of “Cinderella” diseases in light of the fact that they are so often overlooked. “Thyroid disease, I’ve always felt, does not pull on the heart strings as much as cancer, children or heart disease,” says Lyn MyNott, CEO of the charity Thyroid UK, as World Thyroid Day (May 25) approaches this weekend.
Women are six times more likely to be affected by thyroid disorders than men and MyNott — who herself took 15 years to be diagnosed — is among many professionals who believe this to be one of the key reasons for their lack of research, funding and awareness. “In my experience, women are not listened to,” she says, pointing to her charity’s Facebook page, which is littered with examples of women having their symptoms dismissed and overlooked, from decades of depression, weight gain, aches, hair loss and muscle weakness, to being fobbed off and prescribed HRT or antidepressants.
After years of feeling trapped in a body that wasn’t my own, I can certainly relate. My own diagnosis might not have taken as long as four years, but my fight for answers, solutions and seemingly simple explanations certainly has. I was first diagnosed with hypothyroidism in 2020, when my GP ran some tests for suspected IBS and told me I had an underactive thyroid. Perhaps I didn’t concentrate enough in biology lessons, but it was the first time I’d heard of this funny little gland, which apparently affected everything from metabolism to organ function and was probably the reason for my increasingly brittle hair and nails, increasingly low mood and increasing susceptibility to the cold.
“Get your sisters to take a test,” was my GP’s advice at the time, warning that it can be genetic. I later learnt that my grandmother has long suffered with thyroid issues, as do my aunt, uncle and cousin (it’s most common in middle-aged women, but recent years have seen a concerning rise in diagnoses among women in their early twenties).
Thyroid disease, I’ve always felt, does not pull on the heart strings as much as cancer, children or heart disease
I’d never wish my symptoms on a loved one, obviously, but there has been a comfort in comparing notes with my small community of relatives who’ve found themselves on a similar rollercoaster with their health. Christmas last year was spent cracking jokes about our cold feet and puffy faces and comparing the not-so-fun side-effects of being on the wrong dose of levothyroxine (the medication most patients are prescribed to synthetically replace the missing hormones), from the fatigue, weight gain and mood swings that come whenever I take too little, to the anxiety, heart palpitations and insomnia that comes whenever I take too much (roughly 40 per cent of hypothyroid patients are on the wrong dose of medication, according to studies).
“It took your grandma years to get the dosage right,” my mother had warned before I started taking the little white pills I take three of every morning now. It felt like a fog had been lifted the first time I got the dose right — my skin was brighter, my stomach less bloated, my energy levels higher to the point that I could finally get through a night at the pub without feeling like I needed match-sticks to prop up my eye-lids — but that was only after years of on-and-off side-effects, several rounds of beta-blockers to quell the anxiety and many teary phone calls to various GPs and family members along the way.
Montagna says side-effect issues like this are a common complaint among thyroid patients. For most sufferers, “the journey doesn’t end at diagnosis,” she says, pointing to research that shows that even after treatment has started, many patients still experience multiple symptoms including tiredness and slowness, cognitive deficits and muscle aches and weakness.
Satisfaction with treatment also appears to vary hugely, with research showing that it tends to be higher when carried out by a female consultant. Whether that’s because women are more likely to suffer from thyroid issues and therefore have more empathy is not yet known. Like so many aspects of thyroid disorders (why the rise in cases among younger women?) and women’s healthcare in general, there simply isn’t the research to prove it.
Louise Sellar, director at The Thyroid Trust, is one of many calling for a “cultural shift” in the way thyroid disorders are perceived and managed. More research will inevitably help with this, as will better education for the public and professionals. The British Thyroid Foundation says it’s providing GPs with better training to manage patients with thyroid conditions, particularly those who are pregnant, while the Thyroid Trust is campaigning for ministers to address the “glaring omission” of thyroid disease from the government’s recently-published Women’s Health Strategy in England and Scotland.
There are also calls for a taskforce to address the gaps in diagnosis and treatment, for greater awareness of thyroid issues among employers and for better female representation in the field of endocrinology, where the vast majority of consultants are male. “Some positive news is that endocrinology trainees are now predominantly female, so it’s filtering through,” points out Kristien Boelaert, an endocrinology professor and President of the British Thyroid Association.
There needs to be a cultural shift in the way thyroid disorders are perceived and managed
My own endocrinology experience, when I eventually caved at the age of 30 and sought a private one, was unexpectedly emotional. Why was this the first time someone had raised Hashimoto’s with me? Why had no medical professional told me this whole thyroid thing might affect my fertility until now? Were there any other aspects of my health it might affect?
Part of my emotional outburst was in recognition of the luck in my situation. I have a relatively mild form of thyroid disorder and access to press offices and experts through my job, so pulled a few strings. What about the average thyroid patient who can’t afford to go private? If you’re faced with a GP or an employer who puts your low mood down to stress or a type-D personality (more than half of hypothyroid patients reportedly exhibit a type-D personality, characterised by negative emotions and social withdrawal), how are you supposed to advocate for yourself and know to ask for support or a blood test that might explain why?
It’s a minefield out there, pressing doctors on things you’ve read on social media because the research hasn’t caught up. It’s exhausting, trying to cover-up your symptoms for fear of being labelled as hysterical or dramatic or bad at your job. And it’s downright lonely if you don’t know anyone else going through the same thing (a heads up: you probably do).
Some signs to look for, then, if any of this has resonated with you: changes in weight, energy levels, heart rate, skin, mood and periods, as well as sensitivity to temperature. Many of them mimic symptoms of other health issues, of course, and I was lucky that a GP thought to test my thyroid function amid a string of blood tests for something else all those years ago. If not, I might still be wondering what’s wrong with me, putting my fatigue and low-mood down to the stress of the job or living in London.
Had I not been put on the right dose of medication, I might still be deep in that brain fog hole that was stopping me writing this piece altogether. And when awareness of these things matters and is already so lacking, that to me is one of the most worrying aspects of this whole thyroid rollercoaster of all.
Your thyroid cheat-sheet, from when to get tested to which experts to speak to
If you suspect you might have a thyroid problem... Remember one symptom alone does not necessarily mean you have a thyroid disease, but it is worth discussing your symptoms with your GP and asking for a blood test. Thyroid conditions are more common in people with Down's syndrome, type 1 diabetes, Turner’s syndrome, Addison’s disease and other autoimmune diseases so if you have one of these, make sure you are having your thyroid tested regularly.
If you’ve been diagnosed with a thyroid condition... Remember to ask to have your thyroid function tested regularly, usually every three months, as advised by your GP.
If have a thyroid condition and are pregnant or trying to conceive... It’s worth asking to have your thyroid closely monitored as thyroid conditions can make it harder to conceive and cause problems during pregnancy.
If you have a thyroid condition and are going through the menopause... It’s worth asking to have your thyroid function tested annually as declining levels of oestrogen can affect women’s levothyroxine dose requirements. Menopause symptoms and thyroid disorder symptoms often overlap, so if menopause symptoms have been ruled out, doctors should consider doing a thyroid function test.
If you’d like to know more about your thyroid condition... Read NICE’s guidance on managing a thyroid disease and consider booking an appointment with an endocrinologist, a specialist in hormone-related problems. Dr Mark Vanderpump, a consultant endocrinologist at OneWelbeck and the former President of the British Thyroid Association (BTA), Dr Malcolm Prentice and Dr Paul Jenkins all come highly recommended and run private practices in London. The British Thyroid Foundation also has a volunteer helpline service for anyone with questions about their thyroid condition. Visit btf-thyroid.org.
