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My GP surgery said I had a cold but it was thyroid cancer and listening to my instincts saved me. Now read the definitive guide to thyroids - and how to know if something's wrong with yours

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When Abi Phillips thinks over the last couple of years, it is not with fondness of the good times she should have enjoyed as a 20-something.

While her friends were busy with their lives, Abi was being treated for cancer – and it was a cancer that was only spotted in time because she trusted her instinct.

Abi, now 30, was 28 when she suddenly found two lumps in her neck.

'I was getting in the car to take my dog for a walk when I felt a strange tug sensation in my neck as I bent my head,' she says.

'That's when I thought to feel my neck. I wondered if it was lymph nodes so at first wasn't worried, but I still rang my GP surgery.'

Abi got an emergency appointment with the nurse who said she had 'absolutely nothing to worry about and I was probably getting over a cold or illness', she recalls.

Abi Phillips underwent surgery for thyroid cancer after discovering two lumps which appeared 'overnight' in her neck

Abi Phillips underwent surgery for thyroid cancer after discovering two lumps which appeared 'overnight' in her neck

Abi Phillips, left, with former Love Island contestant Demi Jones, who was also diagnosed with thyroid cancer about a year after first entering the villa

Abi Phillips, left, with former Love Island contestant Demi Jones, who was also diagnosed with thyroid cancer about a year after first entering the villa 

'To which I replied, I wasn't. But she then said she wouldn't be able to put any wheels in motion until I'd had my lumps for at least two months.

'I then rang my doctor and asked how long it would take to be referred for a scan and she said I wouldn't be seen for at the very least six months. She wasn't worried - but something told me I should be.'

Abi paid for a private scan days later. The consultant told her she thought the lumps were tumours and took a biopsy.

Ten days later Abi got the results: she had thyroid cancer.

The thyroid is a butterfly-shaped gland that sits at the front of the neck, and produces hormones that regulate metabolism, growth, as well as controlling the functions of the heart, digestive system, brain and muscles.

'I was so glad I went private or I'd have been waiting weeks - and my consultant said it could have got worse,' says Abi. She had to wait a further two weeks to find out what cancer she had – the NHS surgeon she was referred to said he was unsure – between medullary thyroid cancer (usually the more aggressive type) or papillary thyroid cancer.

'Thankfully I had papillary thyroid cancer,' says Abi, who lives in Birmingham with her fiancé Gav.

'The first thing I worried about was whether I'd need chemo and if I'd lose my hair.

'The second thing was my career. I am a singer professionally and wondered if surgery or treatment might affect my vocal cords and ruin my future.'

Six weeks after having her scan, Abi underwent surgery to remove her thyroid and all of her lymph nodes from the right side of her neck.

She says: 'My surgery took seven hours. When I spoke to my surgeon - Neil Sharma at the Queen Elizabeth Hospital in Birmingham - not long ago he said my operation was the surgical equivalent of being hit by a bus as I had a large cancer in my neck. He said this, combined with what I do for a living, was a surgeon's worst nightmare.'

Abi adds: 'He was amazing and my singing voice has never been better! Mr Sharma is looking at how to preserve people's voices during this kind of surgery because it can paralyse the vocal cords entirely. He bought in special equipment that would alert him if my vocal cords were getting stressed during my operation and I cannot thank him enough.'

Three months after the surgery, Abi underwent radioactive iodine treatment. Given as a tablet, it kills any cancer cells that might have been left behind in the thyroid gland.

It makes the patient radioactive for a few days, as Abi recalls: 'I had to stay in a room in hospital for a week and see no one. It was hard but I'd have done anything to get well and ensure all the cancer was gone.'

Dr Mark Vanderpump, a consultant endocrinologist who treats thyroid disorders in the private sector, explains: 'Thyroid cancer usually presents as a solitary nodule or swelling of the thyroid gland [known as goitre].

'They are usually asymptomatic and often detected during a neck examination, or following neck imaging [e.g., CT scan, MRI scan or ultrasound] for an unrelated health problem.'

Six weeks after having her scan, Abi underwent surgery to remove her thyroid and all of her lymph nodes from the right side of her neck

Six weeks after having her scan, Abi underwent surgery to remove her thyroid and all of her lymph nodes from the right side of her neck

While relatively rare, with an estimated incidence of two to three cases per thousand each year in the UK, thyroid cancer is between two to four times more common in women than men, says Dr Vanderpump, who adds that most cases are diagnosed in those aged between 30 to 50 years old.

Dr Gareth Nye, a senior lecturer of endocrinology at the University of Chester, explains that in women it's most commonly detected between the ages of 40 to 44, while 'in men the most likely age of diagnosis is between 70 and 74'.

Why this is the case is not clear, but theories include the fact that 'women seek medical attention at an earlier stage than men, meaning cancer diagnosis comes at an earlier stage', says Dr Nye.

'Plus, oestrogen levels may play a role - although this hasn't been proven.'

Dr Vanderpump adds: 'Risk factors include childhood radiation exposure, a family history of thyroid cancer, and obesity, as recent data from the U.S. suggests.

'Researchers are also looking at the reason females have such an increased risk - factors that may be influential include female hormone changes in pregnancy, use of oral contraceptives and hormone replacement therapy, the age periods start, and age at menopause.'

Symptoms include a lump in the middle of the neck - not to be confused with swollen lymph nodes which are located on the sides of the neck and into the jawline. Other signs include 'a chronic sore throat and difficulty swallowing and/or pain in the front of the neck', says Dr Nye, along with weight gain, tiredness, changes to menstrual period and dry skin or hair.

Abi had no symptoms whatsoever, until the two lumps appeared 'overnight'.

'I literally felt fine - I was busy doing gigs, healthy and did not feel tired,' she recalls. 'I'd always been active and I had no signs whatsoever.'

Following surgery, Abi was put on a synthetic form of thyroxine, the hormone normally produced by the thyroid (more on this later).

Then she went into early menopause.

'I thought my lack of periods was due to the shock of everything with my thyroid being removed and the radiation - but they weren't coming back,' says Abi.

'I went to a gynaecologist as I was worried there might be something else going on.  That's another thing that majorly affects you after you go through cancer, you're so terrified of getting another illness you want to be checked out for everything constantly. Your ability to rationalise any pain or discomfort is really challenging.'

Abi says: 'I didn't freeze my eggs as I didn't realise menopause might happen, but Gav and I are not that concerned as we do not desperately want a family.'

She says the Butterfly Thyroid Cancer Trust has been an immense support.

'Kate, who runs the charity, was always around to answer any questions and help calm me down when I was spiralling and terrified,' says Abi.

'Health-wise, I feel good some days and others I feel extremely lethargic; you've not felt a tiredness like it, it just hits you like a brick wall some days, but you just have to listen to your body.

'Gav has also been so supportive - we've been together 12 years - and even though not having a family might be hard, I am so glad to be alive.

'I'm telling my story to warn other young women not to ignore symptoms such as a lump in the neck, and don't be fobbed off. If I'd ignored mine, who knows if I'd be here now.'

 

THE DEFINITIVE GUIDE TO THYROIDS

By Thea Jourdan 

Just 5cm long, the butterfly-shaped thyroid gland in your neck plays a major role in everything from heart rate to metabolism, mood and bone health.

When this tiny powerhouse stops working it can cause symptoms from fatigue and weight gain to poor digestion and eye problems.

And thyroid problems are soaring – for example, an underactive thyroid now affects more than two million people in the UK, while rates of thyroid cancer have increased by around 65 per cent in the last decade.

Experts point to many possible explanations for this worrying trend, including vegan diets which omit nutrients necessary for thyroid health such as iodine, and Covid-19 infection (even Covid vaccines have come under the spotlight – although large-scale studies have failed to find a clear link.)

As Ashley Grossman, a professor of endocrinology at the University of Oxford explains: 'There's no doubt that the number of people being diagnosed with thyroid disease has soared over the past ten years, although we still don't know exactly why.

'It could be because of greater awareness, which means more people are getting tested. However, there may be underlying factors which need to be further investigated.'

How symptoms can be misdiagnosed as stress... or the menopause

Every year around one in four adults in the UK gets their thyroid checked, reported the BMJ in 2019 - and one in 20 of us will be diagnosed with a thyroid problem in our lifetime, according to the British Thyroid Foundation.

Yet cases are still being missed, says Kristien Boelaert, a professor of endocrinology at the University of Birmingham.

'Thyroid disease can be very serious and may have a significant impact on quality of life, yet symptoms such as fatigue, irritability and weight gain can be vague and easily confused with something else like the menopause, too much stress or ageing,' she told Mail+.

According to a survey last year by the University of Aberdeen, it takes an average of 4.5 years for a thyroid condition to be diagnosed - and considerably longer for patients with an underactive thyroid (hypothyroidism).

Just 5cm long, the butterfly-shaped thyroid gland in your neck plays a major role in everything from heart rate to metabolism, mood and bone health

Just 5cm long, the butterfly-shaped thyroid gland in your neck plays a major role in everything from heart rate to metabolism, mood and bone health

The number of those affected by this is rising: a 2019 review by the UK National Institute for Health and Care Excellence found that the number of people being treated for hypothyroidism in the UK was 2.2 million in 2014 - a rise from 1.4 million in 2005.

This could partly be down to testing being more readily available.

'In the past, it was more difficult but now you can easily get a blood test from your doctor if you feel tired and suspect you may have a thyroid problem,' says Professor Grossman.

Should you take a DIY thyroid test? 

You can easily get home thyroid blood test kits online, costing around £50.

Whether from your doctor or a DIY version, blood tests detect levels of thyroid stimulating hormone (TSH), which is released by the pituitary gland - at the base of the brain - to stimulate your thyroid to produce its own hormones, triiodothyronine (T3) and thyroxine (T4).

High TSH levels usually indicate an underactive thyroid because the pituitary gland is over producing TSH to try to spur the thyroid gland into action.

Without enough T3 and T4, the body essentially slows down, which is why common symptoms are weight gain, fatigue and feeling the cold.

On the other hand, a low TSH level usually indicates an overactive thyroid (or hyperthyroidism), as the gland is producing too much thyroid hormone, so the pituitary gland has dialled down production of TSH to try to calm it.

However, Professor Grossman believes these tests can be a blunt instrument and there may be some people being diagnosed with disease when they are actually within normal ranges.

'The "normal" range for TSH is 2-4... But if you score 9 or 10, it is definitely time to consider treatment.'

An underactive thyroid is usually treated with daily levothyroxine tablets - taken for life - to maintain T4 levels.

Although effective, levothyroxine may not work as well if taken with some multivitamins, as minerals such as iron and calcium can bind to the hormone and inhibit absorption, so it is best to take it on an empty stomach and to wait at least four hours before taking any multivitamins.

Unlike hypothyroidism, rates of an overactive thyroid (hyperthyroidism) have remained relatively stable — although some small studies noted an increase in cases in 2021, coinciding with the Covid pandemic (more on this later).

Deficiency link to vegan diets

Another possible underlying factor in the rise of thyroid problems is iodine deficiency.

The mineral iodine - found in milk, eggs and white fish - is essential for making T3 and T4 hormones, but the UK is now classified as mildly iodine deficient by the World Health Organisation.

The recent increase in veganism has 'caused more iodine deficiency' and in turn this has contributed to the rise in thyroid conditions, says Dr Peter Taylor, a clinical senior lecturer in endocrinology and epidemiology at Cardiff University. But because it takes years for iodine deficiency to cause thyroid troubles, it's difficult to say for sure, he adds.

The mineral iodine - found in milk, eggs and white fish - is essential for making T3 and T4 hormones, but the UK is now classified as mildly iodine deficient

The mineral iodine - found in milk, eggs and white fish - is essential for making T3 and T4 hormones, but the UK is now classified as mildly iodine deficient

Most adults need around 150 micrograms of iodine in their diet every day to stay healthy.

Iodine is especially important during pregnancy (pregnant women need 250 mcg): 'The development of the brain is critically dependent on an adequate supply of iodine,' explains Dr Taylor.

'I think that low levels of iodine in our diet has likely taken a couple of points off our average IQ.' (Due to a lack in pregnancy and then in children's diets.)

A couple of glasses of cow's milk with two eggs provide around 200 mcg.

The fact that the UK does not routinely iodise salt may also play a part in our generally low iodine levels, says Dr Taylor.

Iodised salt (table salt with iodine added) was introduced in the U.S. in 1924, as part of a bid to reduce iodine deficiency in children, and just over half of the salt sold there is now is now iodised - but in the UK it's estimated that less than 5 per cent of households use this type of salt.

Lumps are more common with age 

Thyroid conditions also appear to become more common with age. Nearly one in four over-65s exhibit some level of thyroid dysfunction, according to the National Institutes of Health in the U.S.

However, 'older people may have other health problems, including heart disease, cancer or cognitive decline, which mask the signs of thyroid disease - and if you don't treat the underlying thyroid condition it could be very serious, even resulting in death', says Professor Boeleart, who was clinical lead for the 2019 NICE Guidelines on thyroid diseases.

These thyroid problems may include thyroid nodules – benign growths that can be symptomless, or cause a swelling on the neck and difficulty swallowing – which become more common with age. These are sometimes picked up accidentally on a scan for something else.

In older patients nodules can also cause a form of hyperthyroidism as the growths trigger an excess production of thyroid hormones.

But at the same time, there could be an element of over-diagnosis in older people, suggests Professor Boelaert.

'Lots of studies suggest that many older people are receiving treatment for hypothyroidism even though they don't have an underactive thyroid or it is borderline,' she says.

Is there a link to stress? 

Women are far more likely than men to be affected by thyroid disease of any type.

It's not known exactly why, but there is also a strong auto-immune disease link with thyroid conditions - and auto-immunity (where the body's own immune system mistakenly attacks healthy tissue) is far more common in women.

There's a strong genetic link, too.

'Thyroid disease, both hypothyroidism and hyperthyroidism, tends to run in families, as is the case with all autoimmune diseases,' says Professor Boeleart.

Stress may also trigger the condition in people with a genetic predisposition, adds Professor Grossman.

'There is reasonably good evidence that if you are already predisposed to thyroid disease, stress can push you over the edge,' he says.

That's because high levels of the stress hormone cortisol can lower production of TSH and signal to the thyroid gland to stop producing as much thyroid hormone.

For some women, an autoimmune reaction is triggered after having a baby.

'This can lead to problems with fertility in future,' says Professor Grossman. 'Some women will only become aware of this when they struggle to conceive again.'

... and what about Covid? 

Thyroid hormone levels are also known to fluctuate naturally during periods of illness, especially with viral infections. Of particular interest is a link between Covid-19 and thyroid disease - although there is contradictory research, says Thyroid UK.

Professor Grossman says that he and colleagues noticed a 'lot more' people with thyroid problems during the pandemic, and numbers also increased after the immunisation programme was introduced (although a study of over two million people who received Covid vaccines in Hong Kong between February and September 2021, published in the journal BMC Medicine in 2022, did not find any link).

'It may be that viral infections and immunisations which "tickle up" the immune response also precipitate thyroid disease caused by the autoimmune system,' he says.

'It's a bit of a mystery what's going on and studies are under way to find out.'

He's also seen a rise in the number of patients with sub-acute thyroiditis.

'I had hardly ever seen this before and now I am seeing it quite often, although it is hard to quantify,' he says.

'The thyroid stops working and releases a flood of thyroid hormone straight into the bloodstream rather more slowly, causing unpleasant symptoms such as sudden weight loss, shaking and extreme fatigue - which last for a few weeks before resolving when it starts working properly again.

'These patients had no family history of thyroid disease and antibody tests came back negative, so it wasn't an auto-immune disease,' he adds.

'Many of us hypothesise that it may be an acute reaction to Covid, but we don't have the full answer yet.'

Worrying rise of thyroid cancer 

A common sign of thyroid dysfunction is a goitre - a swelling of the thyroid gland, which looks like a lump at the front of the neck.

It can be caused overactive or underactive thyroid or severe iodine deficiency, and occurs in about 25 per cent of the population.

It should always be checked by a GP, as in rare cases a swelling like this can be a sign of thyroid cancer - rates of which are increasing.

The number of cases is projected to increase by nearly three quarters in the UK between 2014 and 2035, according to the Thyroid Trust. (Although these would be still be relatively rare, at 11 cases per 100,000 people by 2035.)

Along with goitre and unexplained hoarseness that does not resolve after a few weeks, 'a sore throat that does not get better may also be a sign that something is wrong', says Professor Grossman.

She adds that one factor making a huge difference to the number of cases picked up is high-tech scanning. Some experts believe this is finding smaller cancers which would never cause significant health problems left untreated.

'There has been a huge rise in the detection of these small tumours measuring 10-15mm or less in diameter, yet mortality rates for thyroid cancer have not changed much,' says Professor Grossman.

This raises questions about treatment, which can involve surgery.

'One could say that in small, low-risk cancers sometimes the cure is worse than the disease,' says Professor Fausto Palazzo, a consultant endocrine surgeon at Hammersmith Hospital in London.

Thyroid surgery can affect the voice, sometimes permanently, or damage the parathyroid glands, reducing levels of parathyroid hormone, which regulates levels of calcium in the blood.

'Increasingly the option to watch and wait can be adopted if the tumour is small and deemed of very low risk of spreading,' he says.

Thyroid cancers are also treated with radioactive iodine. 'The thyroid is the only organ which takes up iodine in this way so the treatment is very targeted,' says Professor Grossman.

'And even thyroid cancer cells that have spread around the body can be targeted by radioactive iodine.'

The treatment is given as a tablet and patients must isolate for a period of time, and avoid contact with people who may be more vulnerable to residual radiation (such as pregnant women).

How it can lead to bulging eyes 

Thyroid eye disease, also known as Graves' orbitopathy or Graves' ophthalmopathy, is a debilitating autoimmune condition that affects around one in four people with an overactive thyroid caused by Graves' disease (an autoimmune condition that affects the thyroid), according to the NHS.

A 3D illustration showing a woman with Graves' disease, which gives bulging eyes

A 3D illustration showing a woman with Graves' disease, which gives bulging eyes

It typically affects younger women - it's not known why - and can result in significant protrusion of the eyes because of inflammation in the eye muscles, eye lids, tear glands and fatty tissue behind the eye, leading to vision disturbances.

'The psychological effects can be profound, causing depression and isolation,' says Dr Peter Taylor, a clinical senior lecturer in endocrinology and epidemiology at Cardiff University.

'We did a study looking at different diseases and quality of life and found that thyroid eye disease in young women scores about the same as head and neck cancer,' he told Mail+.

In the past, patients were given steroids, radiotherapy and surgery but, for many, the problems still persisted.

Fortunately, 'there is a new game changing class of drugs, called human monoclonal antibody that targets the insulin-like growth factor-1 receptor,' says Dr Taylor.

These work by reducing the inflammation that causes eyes to bulge.

'Trials of the first major one, teprotumumab, showed it significantly improved thyroid eye disease and will likely reduce the need for surgery whilst improving vision and quality of life,' says Dr Taylor.

 

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