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How Women With Thyroid Disease Are Being Gaslit And Patronised
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.
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.
"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) "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 gapsThe 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.
What Is Hyperthyroidism? Symptoms, Causes And Treatments
Hyperthyroidism can be managed in a few ways. Treatment plans will vary among patients and will depend on medical status and history. It's also recommended to seek the care of an endocrinologist, who specializes in hormone-related conditions and has experience with hyperthyroidism. It's worth noting that there is no consensus on the best treatment for hyperthyroidism, and each treatment method comes with it's own risks and benefits. Treatments may also be used in combination with each other, for example, antithyroid drugs may be used preceding surgery. Speak with your health care provider to decide which treatment is best for you.
Medications for HyperthyroidismThe first hyperthyroidism treatment doctors often turn to is certain antithyroid drugs, which block the thyroid gland from making more hormones. Methimazole is most commonly used, while propylthiouracil (PTU) is rarely used due to its potential to cause liver problems. Methimazole is particularly used when Graves' disease is the cause and has been known to have less severe side effects. However, propylthiouracil may be used during the first trimester of pregnancy, as methimazole can cause abnormalities in fetal development. It may also be used in patients who opt out of surgery or radioactive iodine treatment and have minor drug reactions to methimazole.
Doctors may also prescribe beta-blocker drugs which prevent some of the side effects of excess thyroid hormones in the body. Beta-blockers do not affect your thyroid hormone levels. Instead, they help people feel better by slowing down heart rate and reducing symptoms in the short term.
ProceduresSurgery involving the removal of all or part of the thyroid may become an option for hyperthyroid patients after medication, or for patients with severe hyperthyroidism or a large goiter. While surgery may remove the source of hyperthyroidism, it may lead to becoming hypothyroid, or deficient in thyroid hormones. Once hypothyroid, you'll need to take daily thyroid hormone supplements to keep your levels in check.
Radioactive iodine may also be used to combat hyperthyroidism. For this procedure, the hyperthyroid patient swallows radioactive iodine in a capsule to get the iodine into the bloodstream. The thyroid gland then quickly takes up the iodine, even though it's radioactive, because the thyroid requires iodine to make its hormones. However, the radioactive iodine damages or destroys the overactive thyroid cells instead.
Some patients may remain hyperthyroid after radioactive iodine treatment, although the hyperthyroidism may be less severe. More commonly, patients will become hypothyroid and require daily thyroid hormone supplementation.
Radioactive iodine has been shown to be a safe treatment for adults and children over the age of 5 with no clear increase in cancer in those treated. The treatment has been used for over 60 years and has been given to more than 70% of hyperthyroid adults in the U.S.
Still, Dr. DeSalvo recommends against using radioactive iodine for certain patients. For one, it should not be used in those with Graves' eye disease where the radioactive iodine could worsen the eye disease. Radioactive iodine is also inadvisable for pregnant patients because the destructive iodine would also be taken up by the baby's thyroid, resulting in hypothyroidism for the baby. Additionally, the procedure is not recommended for anyone breastfeeding, in order to protect the baby from concentrated radioactive iodine in the mother's breast and breastmilk.
In the case of pregnant and breastfeeding people, other therapies such as glucocorticoids (a type of steroid used for anti-inflammatory and autoimmune treatment) and cholestyramine, used to decrease thyroid hormone levels, may be used.
Lifestyle ChangesDr. Paz recommends not smoking, as smoking can lead to extra complications from Graves' disease. In combination with medical treatment, regular exercise, relaxation techniques and a healthy diet can help strengthen the body, improve quality of life and alleviate some symptoms.
As the thyroid uses iodine to create thyroid hormone, it may also be recommended that you limit foods containing high amounts of iodine in your diet. These may include iodized salt, kelp and other seafood. If radioactive iodine therapy is part of your treatment plan, a low iodine diet may also be suggested prior to radioactive iodine therapy. Speak with your doctor or endocrinologist to determine which diet changes would benefit your condition most.
Hypothyroidism (Underactive Thyroid): Symptoms, Causes And Treatment
About 4.6% of the population 12 years of age and older in the U.S. Has hypothyroidism, according to the National Health and Nutrition Examination Survey (NHANES III) . The condition is more common in women and in people over the age of 60.
Certain pre-existing conditions are risk factors for hypothyroidism, such as Turner syndrome (a genetic disorder), type 1 diabetes, rheumatoid arthritis, Down's syndrome and lupus (a chronic autoimmune disease). Family history of autoimmune thyroiditis can make someone more susceptible to developing hypothyroidism as well.
Hypothyroidism in AdultsReasons why the thyroid gland may be underactive or stop working in adults includes:
Hypothyroidism develops slowly and because the symptoms are so varied, many people may not suspect they have the condition for months or even years. As the condition progresses, you may experience fatigue, weight gain, experience low body temperature (feeling cold), fatigue, dry skin, constipation, forgetfulness or depression. However, because the symptoms overlap with many other conditions, the only way to know whether you have hypothyroidism is to get tested by your doctor.
While existing damage to the thyroid cannot be reversed, there are some instances in which thyroid function may return to normal, such as in postpartum thyroiditis. Additionally, cases have been reported of improvement in thyroid function tests and/or antibodies after parasite infection eradication and after following specific dietary regimens. And while there is no conventional cure for hypothyroidism, it can be successfully controlled through medication combined with proper diet and nutritional support.
Hypothyroidism in InfantsInfants can be born with an underactive thyroid, a condition called congenital hypothyroidism. Congenital hypothyroidism may be primary, meaning the thyroid gland does not make enough hormone, or central, meaning the brain does not tell the thyroid to make sufficient hormone levels.
Common causes of hypothyroidism in infants include being born without a thyroid gland, being born with an underdeveloped thyroid gland or being born with a thyroid gland in the wrong place.
Certain medications, excessive iodine taken during pregnancy and iodine deficiency can also cause congenital hypothyroidism.
While newborns often don't show symptoms of thyroid deficiency, symptoms of hypothyroidism that may appear over the first few months of life include:
Babies who are born in the U.S. And Canada, among many other countries, are screened for hypothyroidism at birth. When diagnosed and treated early, most of the effects of hypothyroidism can be reversed. However, if left untreated, congenital hypothyroidism can lead to intellectual disability or stunted growth. In many cases, lifelong treatment is necessary.
Hypothyroidism in Children and TeensAcquired hypothyroidism is a condition that occurs when children are born with a functioning thyroid that stops working after infancy. The most common cause of hypothyroidism in children and teenagers is Hashimoto's disease, an autoimmune disorder in which the immune system attacks the thyroid gland.
Other causes of hypothyroidism in children and teens includes:
Because hypothyroidism typically develops slowly, symptoms may go unnoticed. However, two significant signs of hypothyroidism in children are stunted growth and delayed puberty in adolescents.
Treatment for hypothyroidism in children usually involves medication that replaces hormones that the child's thyroid gland can no longer produce.
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