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How women with thyroid disease are being gaslit and patronised
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Article in Inews: inews.co.uk/inews-lifestyle... - Thyroid UK
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How women with thyroid disease are being gaslit and patronised
Gaps in the diagnosis and treatment of thyroid disease are destroying women’s quality of life – and even holding them back in the workplace
It took nine years for Helga Taylor to be diagnosed (Photo: Supplied)
It took nine years for Helga Taylor to be diagnosed (Photo: Supplied)
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By Sarah Graham
June 20, 2023 7:00 am(Updated 7:01 am)
We’ve all had days where we felt sluggish, tired and unable to concentrate at work, or sat through meetings feeling jittery, irritable and anxious. But for people living with thyroid disease, such experiences can have a much more profound impact. What’s more, business experts believe gaps in the diagnosis and treatment of these conditions could be fuelling gender inequality in the workplace.
A recent survey by Professors Catia Montagna and Alexandros Zangelidis, from the University of Aberdeen Business School’s Centre for Labour Market Research, found that thyroid patients – the majority of whom are women – wait an average of 4.5 years for a diagnosis. Even after starting treatment, 92 per cent still experience multiple symptoms, including tiredness and slowness (79 per cent), cognitive deficits (64 per cent), and muscle aches and weakness (62 per cent).
Partly inspired by Professor Montagna’s experience of Hashimoto’s Disease – an autoimmune condition causing hypothyroidism – the researchers have been investigating the gendered impact of thyroid issues on the workforce.
“We already know from the literature that various chronic diseases have an impact on workers’ productivity, but very little is known specifically about thyroid conditions. It’s primarily women who are affected, so we wanted to understand whether this plays a role in the gender disparities we’re already aware of,” Professor Zangelidis explains.
Their previous research, published in 2022, found that thyroid disease could be a contributing factor in the gender pay gap. This data analysis showed women with undetected hypothyroidism were paid 5 percent less than women without a thyroid dysfunction, but their wages began to rise after the condition was diagnosed and treated.
What is thyroid disease?
The thyroid is a gland in your neck producing thyroid hormones that control your metabolism. One in 20 people live with a thyroid problem, with women six times more likely to be affected than men. Thyroid conditions can generally be divided into two categories: hypothyroidism (an underactive thyroid) or hyperthyroidism (an overactive thyroid).
“The symptoms can be quite varied because you have receptors for thyroid hormones in every organ of your body,” explains Professor Kristien Boelaert, a professor of endocrinology and consultant endocrinologist.
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In hypothyroidism, every process in the body will slow down, causing symptoms such as tiredness, weight gain, brain fog, muscle weakness, depression, and heavy or irregular periods. With hyperthyroidism, it’s the opposite – a speeding up of the metabolism, resulting in symptoms like anxiety, irritability, weight loss, hyperactivity, mood swings, constant tiredness and difficulty sleeping.
The problem is these symptoms are relatively vague and may be mistaken for other things, like perimenopause, Professor Boelaert explains. This can result in thyroid issues going undiagnosed for a long time.
The effects on work and life
“From our survey and speaking to patients, there’s a clear sense of frustration about the lag in diagnosis time,” says Professor Montagna. “4.5 years was the average across all thyroid conditions, but some patients told us they’d waited up to 30 years. During that time, their symptoms deteriorated, and the impact on their everyday lives worsened.”
Retired nurse Pamela Tootal, 75, first experienced symptoms in the 90s, when she was running a nursing home. “I was under a lot of stress at work. I had palpitations, I was very hyper, I could rush around doing all these things and then suddenly it would hit me.”
She consulted her GP, “but my blood test readings came back normal,” she says. Pamela had subclinical hyperthyroidism, which can sometimes be missed by standard testing.
For her, the mental health impact was profound. It wasn’t until 2018, after she had twice attempted suicide and been admitted to psychiatric hospital, that she was finally diagnosed with Grave’s Disease – an autoimmune disease that causes hyperthyroidism – and put on medication.
TBC
....
“When I came out of hospital, I went to my GP and [insisted on being] referred back to endocrinology. My endocrinologist diagnosed me with hyperthyroidism in one visit. She saved my life, and going on [hyperthyroidism drug] carbimazole was like a miracle,” Pamela says.
Looking back, 48-year-old artist and designer Natalie Guy says she had symptoms of hypothyroidism for more than a decade, including weight gain, digestive issues, fatigue, brain fog, heavy periods and a puffy face. “[These] were dismissed out of hand with patronising comments such as ‘eat more vegetables’, ‘take up jogging’,’ it’s laziness’ and ‘it’s all in your head’, by my then GP and a consultant,” she says.
Natalie ran her own business, teaching art workshops and mosaicing large 3D sculptures. “I was working really hard, but it was taking me longer to do things,” she says. “At the weekend I couldn’t socialise, I would just crash on the sofa trying to build up some energy for the next week, so I missed out on lots of social stuff too.”
It wasn’t until 2020, when Natalie was diagnosed with widespread thyroid cancer, that her thyroid was removed and she began taking medication. In the meantime, she’d had to close her business and move back in with her mum.
She now knows her symptoms should have been flagged up as hypothyroidism, and that benign thyroid disease has been linked with a higher risk of thyroid cancer (although thyroid cancer remains rare).
“The lack of diagnosis and treatment impacted me emotionally, physically, mentally and financially,” she says. “If I had received the right treatment and support earlier, my quality of life would have been so much better. I really felt isolated.”
This is common, says Helga Taylor, co-founder of patient advocacy group Improve Thyroid Treatment (ITT). “[Thyroid patients] get a lot of gaslighting. It took nine years for me to be diagnosed, and I was repeatedly told, ‘you’re getting old’, ‘you need more time for yourself’, or ‘would you like some antidepressants?’ Even after I was diagnosed, I didn’t get well enough on the [thyroid replacement medication], to the extent that my job was at risk,” she says.
Helga co-founded the patient advocate group Improve Thyroid Treatment (Photo: Supplied)
Helga co-founded the patient advocate group Improve Thyroid Treatment (Photo: Supplied)
“Patient voices are missing from the discussion when treatment guidance is drawn up, and when patients say they don’t feel any better [after starting treatment], they’re dismissed.”
Treatment gaps
The challenge for many of these patients is that there simply isn’t a straightforwardly effective treatment option. Hypothyroidism is generally treated with levothyroxine, a synthetic version of hormone thyroxine (T4). However, Professor Boelaert explains, around 10 per cent of patients – like Helga – don’t feel well on it.
Anecdotally, she adds, some patients report better results using a combination of T3 (triiodothyronine) and T4 hormone therapy. This is controversial though, she explains; there isn’t currently enough clinical evidence to support it, and T3 is very expensive in the UK, meaning it isn’t considered cost-effective enough to be included in treatment guidelines.
Most people with hyperthyroidism will be started on medication, like carbimazole, which reduces the amount of hormones the thyroid produces. “For autoimmune hyperthyroidism, the first option is to give a prolonged course of those tablets for 18 to 24 months, to see if we can make it go into remission. That only happens in about 50 percent of people, so in this current era it’s not a very good success rate,” she says.
The more definitive alternative is surgery to remove the thyroid. This is a guaranteed cure, Professor Boelaert explains, but it’s drastic – invasive, expensive, and leaves the patient with hypothyroidism, meaning they’ll need to take levothyroxine for the rest of their life.
The other option is radioactive iodine, she says, which has been used safely and effectively for 80 years – but it too is not without its downsides. “It works very well, 90 per cent of people will be cured with one single capsule, and it’s not invasive. But again, the likelihood is that people’s thyroid will become underactive and they’ll need to be on levothyroxine for the rest of their life,” she says. It’s also not suitable for parents of young children, or anyone who’s pregnant or trying to conceive.
This absence of better treatment options is understandably a source of frustration for patients and healthcare professionals alike. “We have so many immunological treatments now, for so many conditions – autoimmune diseases, rheumatological diseases, cancers, you name it; most diseases have an immunological treatment that works very well. Yet here we have a very common autoimmune disease, and we don’t actually have an immunological treatment,” Professor Boaelaert says.
It’s hardly surprising then that Professor Montagna and Professor Zangelidis found such a large majority of thyroid patients still struggling with symptoms, even many years post-diagnosis. But, given the impact on both the economy and patients’ quality of life, where do we go from here?
“We need early diagnosis. We need improved awareness in the medical profession and in the workplace. We need HR practices which acknowledge that these conditions may affect individuals’ productivity, and which provide support to people who are affected – just as we’ve seen happen with the menopause,” Professor Montagna says.
Commenting on their findings, Professors Montagna and Zangelidis also highlight the “glaring omission” of thyroid disease from the recently published women’s health strategies in both England and Scotland, and call for a taskforce to address the gaps in diagnosis and treatment. For Helga and ITT, it’s vital that patient quality of life is given greater consideration, and that patients have a voice in the conversation going forwards.
Visit The British Thyroid Foundation and The Thyroid Trust for more information and advice about thyroid disease.
There is no cure for an auto immune disease -
but there are treatment options to resolve symptoms - but whether the treatment option is successful is very much dependant on the understanding of the AI Disease :-
and having a flexible approach to monitoring and dosing the patient using any of the thyroid treatment options.
As for " RAI treatment working very well " - for whom ?
Maybe they need to read their own research :-
ncbi.nlm.nih.gov/pubmed/306...
notwithstanding the now known 25 year window/risk link to cancer -
🤦🏾♀️ It would have been clever to sign up wouldn't it? Lol but in my defence I've had very little sleep lately. I'm sticking to this excuse. Thanks for copy and pasting!
SlowDragonAdministrator
Good article….pity it didn’t mention the sheer number of thyroid patients……at least 2 million in U.K….
Thank you Eeyore it's great!
It's a shame though they failed to mention the women who become so ill from prolonged non-diagnosis and undertreatment they struggle to work at all and cannot access the workplace forced to rely on benefits (myself and many others). That said the personal examples were good showing how extremely one could be affected.
One thing not a criticism, just something that confuses me: how is there no good clinical evidence of the effectiveness of T3? Surely that can't be true?
I might try and share this elsewhere.
I was quite surprised TUK didn't get a mention?... "Visit The British Thyroid Foundation and The Thyroid Trust for more information and advice about thyroid disease."
One thing not a criticism, just something that confuses me: how is there no good clinical evidence of the effectiveness of T3? Surely that can't be true?
I think it's a case of turning a blind eye.... America seems to be cottoning on looking at the article 🍄 put up about combined therapy
Yes! Why not link to Thyroid UK? Hmm🤔
Not impressed by that.
Just had a rummage, Helga seems to be affiliated to... thyroidtrust.org/helga.html
Helga does support The Thyroid Trust and Thyroid UK, but she is one of our co-leads of ITT Improve Thyroid Treatment group (a patient-led group on FB). We all work together on various projects, but also do our own pieces of work.
One never knows exactly what a journalist will pick for their final article from all the information they've collected from different sources.
Good article - thanks for posting TiggerMe - and, yes, shame they didn't mention Thyroid UK 😔
Great job doing the copy and pasting to Eeyore 👍 For future reference and anyone coming along later who wants to get behind the paywall prepend with 12ft.io/ - works with most but, not all.
Here's the article behind the paywall:
perhaps lynmynott could comment on the article (which I also read in the paper) and maybe even contact the authors of the report and educate them a bit more about the true state of thyroid treatment on NHS.
ooooo good find!
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