First came what Jade O’Saye thought was a stye – a blister on the eyelid, although in her case it was on the white of her eye – then pain when she blinked. Within months, her right eye was so swollen and sore it was bulging out the socket.

‘My eye was protruding and really red and angry,’ says Jade, 40, a procurement manager for a travel company. She struggled even to close the eye to sleep.

Not only was it painful, ‘it was completely disfiguring’, she adds.

‘I wore sunglasses to hide it, but on one occasion I had to take them off at the GP surgery to sign a form and a woman tapped me on the shoulder and said did I know my eye was bulging out of my head. Everyone turned to look at me – I was mortified,’ recalls Jade, who lives in Newport, Shropshire, with partner Richard, 48, a business procurement manager, and stepchildren Reuben, 22, and Lexi, 19.

‘I became a complete shell of my former self,’ she says. ‘I couldn’t drive and lost my independence. One holiday, I was in so much pain, I cried every day.’

When the pain of the ‘stye’ – which first appeared in September 2023 – became excruciating even when Jade simply blinked, Richard took her to A&E.

First came what Jade O’Saye thought was a stye – a blister on the eyelid, although in her case it was on the white of her eye

Doctors diagnosed not a stye but thyroid eye disease (TED), where the immune system attacks the muscle and fat tissues around the eyes, causing inflammation and swelling

There, doctors diagnosed not a stye but thyroid eye disease (TED), where the immune system attacks the muscle and fat tissues around the eyes, causing inflammation and swelling.

The same immune response can also affect the thyroid and around 80 per cent of TED cases occur in people with hyperthyroidism (an overactive thyroid), says Bernie Chang, a professor of oculoplastics and orbital surgery at Leeds Teaching Hospital NHS Trust. Another 10 per cent of cases are caused by an underactive thyroid.

Not everyone with a thyroid disorder will develop it, but smoking increases the risk, with genes and stress also playing a role.

Five times more common in women than men, TED affects around 50,000 people in the UK – typically those aged 40 to 60.

The most common symptoms of TED include dry or gritty eyes, sensitivity to light and an ache behind the eyes which is worse when you look up, says Professor Chang.

‘This is because the muscles and fat around the eyes get inflamed and swell up. Once you have swelling there, the eye will get pushed out of the eye socket – so it bulges out,’ he adds.

In very rare cases (5 per cent or less) TED can lead to sight loss, as the inflammation compresses the optic nerve and slows blood flow into the eye.

TED can have a devastating effect on people’s lives, says Vickie Lee, a consultant ophthalmic and oculoplastic surgeon at Imperial College Healthcare NHS Trust. A major study of 100,000 patients by researchers at Odense University Hospital in Denmark found that people with TED were around three times more likely to take their own lives.

‘I have lots of people crying in my clinics,’ says Miss Lee, who also represents the British Oculoplastic Surgery Society and Royal College of Ophthalmologists for the British Thyroid Foundation. ‘The impact of this disease has been hugely underestimated.’

When Jade went to A&E, doctors instantly suspected she had TED – as three months before, she’d been diagnosed with Graves’ disease – an autoimmune condition that makes the thyroid gland overactive. But while she was taking carbimazole to control her symptoms (which included heart palpitations, insomnia and weight loss), she wasn’t warned she was at risk of TED.

Treatment for TED is usually a course of steroids to dampen down the inflammation.

Vickie Lee, a consultant ophthalmic and oculoplastic surgeon at Imperial College Healthcare NHS Trust

 ‘They are effective in most cases and seem to work better and have fewer side-effects if you have them by IV drip rather than tablets, usually 12 doses given weekly,’ says Professor Chang.

‘This isn’t a cure but it dampens down the inflammatory impact of TED until the disease “burns itself out”.’ This is usually between one to two years or longer, dependening on the severity. The typical pattern is for it get worse, plateau and then become inactive, he adds.

Other treatment options include lubricating eye drops, selenium supplements (which may protect against damage from inflammation), immunosuppressants and targeted radiotherapy – either to shut down the thyroid gland or, in low doses, delivered around the eyes to reduce inflammation.

In some cases, patients may be offered a thyroidectomy – surgery to remove the thyroid gland.

Standard treatments did not work for Jade. ‘My eyes were so sensitive to dust and wind that at one point I could only go out wearing mountaineering goggles and had people laughing and pointing at me,’ she says. ‘If it hadn’t been for the support I got from family and friends, I would’ve been suicidal.’

Jade’s private doctor supported her decision to have a thyroidectomy primarily to treat her Graves’ disease, and she had the operation in May last year.

Although some of her Graves’ symptoms improved, her eyes still bulged and her eyelid wouldn’t close, leaving her in constant pain.

So Jade had a four-hour ‘decompression’ operation in January to drill away some of the bone and fat from the eye socket to relieve pressure and bulging – it comes with risks, including facial numbness, double vision and, in extremely rare cases, sight loss.

‘Once they took the bandage off, I looked like I’d been kicked around the football pitch,’ recalls Jade.

But there are new possible treatments in the pipeline, including targeted drugs that act on the immune system, which are undergoing trials.

Yvonne Alexander, 50, an investor relations consultant from west London, was one of the first in the UK to be treated with one of the drugs being trialled

After eight doses of teprotumumab, Yvonne’s eyes returned to normal

 Yvonne Alexander, 50, an investor relations consultant from west London, was one of the first in the UK to be treated with one of the drugs being trialled, teprotumumab, which is given intravenously and stops the tissues around the eye from swelling.

Yvonne was diagnosed with Graves’ disease in April 2022 and developed TED two months later while skiing in Norway.

‘I was posting a lot of photographs on Instagram, and I noticed in the photos my eyes looked like they were bulging,’ she says.

Not prepared to wait for her symptoms to burn out, and ‘petrified’ of the surgical option, Yvonne found out about a trial for teprotumumab – being run by Miss Lee at Imperial – and was started on it in September 2022. The drug blocks the action of insulin-like growth factor 1 receptor (IGF-1R), which is pumped out by the muscles and fat around the eyes – but in patients with TED too much is produced.

‘So, if you can block that, the muscle and fat don’t swell – it seems to work in over 80 per cent of cases,’ says Professor Chang.

There’s also evidence teprotumumab actually shrinks the swollen tissue too, he adds – a ‘key difference’ compared with steroids, as he explains: ‘With steroids, in the majority of cases the bulging doesn’t get better it just doesn’t get worse.’

Potential side-effects of teprotumumab include a flare-up of the swelling and often temporary hearing loss as the drug can target similar receptors in the ears as to those surrounding the eye.

The drug is currently only available on the NHS as part of a trial.

After eight doses of teprotumumab, Yvonne’s eyes returned to normal, although she did experience a flare-up 18 months later, which lasted two months.

‘For me, having a drug treatment was a lifesaver – I was completely disfigured by TED and I felt a constant pressure and ache,’ says Yvonne, who was unable to work for 17 months when her TED was at its peak, but who is now employed again.

Meanwhile, in March, Jade had further surgery to correct eyelid retraction (where the upper eyelid pulls away from the eyeball, causing the white of the eye to be exposed – another result of TED).

This was only partially successful and she’s since been told she will need two more eyelid operations, as she still can’t close her eye and is in constant pain.

‘It’s going to be a long haul,’ says Jade. ‘TED can be viewed as a minor problem – but it doesn’t feel that way if it happens to you.’

• For more information go to tedct.org.uk