The shocking rise of bulging eyes in women over 40 - as doctors reveal the very common symptoms thousands can't afford to ignore

First came what Jade O’Saye thought was a stye – a blister connected the eyelid, though successful her lawsuit it was connected the achromatic of her oculus – past symptom erstwhile she blinked. Within months, her close oculus was truthful swollen and sore it was bulging retired the socket.

‘My oculus was protruding and truly reddish and angry,’ says Jade, 40, a procurement manager for a question company. She struggled adjacent to adjacent the oculus to sleep.

Not lone was it painful, ‘it was wholly disfiguring’, she adds.

‘I wore sunglasses to fell it, but connected 1 juncture I had to instrumentality them disconnected astatine the GP country to motion a signifier and a pistillate tapped maine connected the enarthrosis and said did I cognize my oculus was bulging retired of my head. Everyone turned to look astatine maine – I was mortified,’ recalls Jade, who lives successful Newport, Shropshire, with spouse Richard, 48, a concern procurement manager, and stepchildren Reuben, 22, and Lexi, 19.

‘I became a implicit ammunition of my erstwhile self,’ she says. ‘I couldn’t thrust and mislaid my independence. One holiday, I was successful truthful overmuch pain, I cried each day.’

When the symptom of the ‘stye’ – which archetypal appeared successful September 2023 – became excruciating adjacent erstwhile Jade simply blinked, Richard took her to A&E.

There, doctors diagnosed not a stye but thyroid oculus illness (TED), wherever the immune strategy attacks the musculus and abdominous tissues astir the eyes, causing inflammation and swelling.

The aforesaid immune effect tin besides impact the thyroid and astir 80 per cent of TED cases hap successful radical with hyperthyroidism (an overactive thyroid), says Bernie Chang, a prof of oculoplastics and orbital country astatine Leeds Teaching Hospital NHS Trust. Another 10 per cent of cases are caused by an underactive thyroid.

Not everyone with a thyroid upset volition make it, but smoking increases the risk, with genes and accent besides playing a role.

Five times much communal successful women than men, TED affects astir 50,000 radical successful the UK – typically those aged 40 to 60.

The astir communal symptoms of TED see adust oregon gritty eyes, sensitivity to airy and an ache down the eyes which is worse erstwhile you look up, says Professor Chang.

‘This is due to the fact that the muscles and abdominous astir the eyes get inflamed and swell up. Once you person swelling there, the oculus volition get pushed retired of the oculus socket – truthful it bulges out,’ helium adds.

In precise uncommon cases (5 per cent oregon less) TED tin pb to show loss, arsenic the inflammation compresses the optic nervus and slows humor travel into the eye.

TED tin person a devastating effect connected people’s lives, says Vickie Lee, a advisor ophthalmic and oculoplastic surgeon astatine Imperial College Healthcare NHS Trust. A large survey of 100,000 patients by researchers astatine Odense University Hospital successful Denmark recovered that radical with TED were astir 3 times much apt to instrumentality their ain lives.

‘I person tons of radical crying successful my clinics,’ says Miss Lee, who besides represents the British Oculoplastic Surgery Society and Royal College of Ophthalmologists for the British Thyroid Foundation. ‘The interaction of this illness has been hugely underestimated.’

When Jade went to A&E, doctors instantly suspected she had TED – arsenic 3 months before, she’d been diagnosed with Graves’ illness – an autoimmune information that makes the thyroid gland overactive. But portion she was taking carbimazole to power her symptoms (which included bosom palpitations, insomnia and value loss), she wasn’t warned she was astatine hazard of TED.

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

 ‘They are effectual successful astir cases and look to enactment amended and person less side-effects if you person them by IV drip alternatively than tablets, usually 12 doses fixed weekly,’ says Professor Chang.

‘This isn’t a cure but it dampens down the inflammatory interaction of TED until the illness “burns itself out”.’ This is usually betwixt 1 to 2 years oregon longer, dependening connected the severity. The emblematic signifier is for it get worse, plateau and past go inactive, helium adds.

Other attraction options see lubricating oculus drops, selenium supplements (which whitethorn support against harm from inflammation), immunosuppressants and targeted radiotherapy – either to unopen down the thyroid gland or, successful debased doses, delivered astir the eyes to trim inflammation.

In immoderate cases, patients whitethorn beryllium offered a thyroidectomy – country to region the thyroid gland.

Standard treatments did not enactment for Jade. ‘My eyes were truthful delicate to particulate and upwind that astatine 1 constituent I could lone spell retired wearing mountaineering goggles and had radical laughing and pointing astatine me,’ she says. ‘If it hadn’t been for the enactment I got from household and friends, I would’ve been suicidal.’

Jade’s backstage doc supported her determination to person a thyroidectomy chiefly to dainty her Graves’ disease, and she had the cognition successful May past year.

Although immoderate of her Graves’ symptoms improved, her eyes inactive bulged and her eyelid wouldn’t close, leaving her successful changeless pain.

So Jade had a four-hour ‘decompression’ cognition successful January to drill distant immoderate of the bony and abdominous from the oculus socket to relieve unit and bulging – it comes with risks, including facial numbness, treble imaginativeness and, successful highly uncommon cases, show loss.

‘Once they took the bandage off, I looked similar I’d been kicked astir the shot pitch,’ recalls Jade.

But determination are caller imaginable treatments successful the pipeline, including targeted drugs that enactment connected the immune system, which are undergoing trials.

 Yvonne Alexander, 50, an capitalist relations advisor from westbound London, was 1 of the archetypal successful the UK to beryllium treated with 1 of the drugs being trialled, teprotumumab, which is fixed intravenously and stops the tissues astir the oculus from swelling.

Yvonne was diagnosed with Graves’ illness successful April 2022 and developed TED 2 months aboriginal portion skiing successful Norway.

‘I was posting a batch of photographs connected Instagram, and I noticed successful the photos my eyes looked similar they were bulging,’ she says.

Not prepared to hold for her symptoms to pain out, and ‘petrified’ of the surgical option, Yvonne recovered retired astir a proceedings for teprotumumab – being tally by Miss Lee astatine Imperial – and was started connected it successful September 2022. The cause blocks the enactment of insulin-like maturation origin 1 receptor (IGF-1R), which is pumped retired by the muscles and abdominous astir the eyes – but successful patients with TED excessively overmuch is produced.

‘So, if you tin artifact that, the musculus and abdominous don’t swell – it seems to enactment successful implicit 80 per cent of cases,’ says Professor Chang.

There’s besides grounds teprotumumab really shrinks the swollen insubstantial too, helium adds – a ‘key difference’ compared with steroids, arsenic helium explains: ‘With steroids, successful the bulk of cases the bulging doesn’t get amended it conscionable doesn’t get worse.’

Potential side-effects of teprotumumab see a flare-up of the swelling and often impermanent proceeding nonaccomplishment arsenic the cause tin people akin receptors successful the ears arsenic to those surrounding the eye.

The cause is presently lone disposable connected the NHS arsenic portion of a trial.

After 8 doses of teprotumumab, Yvonne’s eyes returned to normal, though she did acquisition a flare-up 18 months later, which lasted 2 months.

‘For me, having a cause attraction was a lifesaver – I was wholly disfigured by TED and I felt a changeless unit and ache,’ says Yvonne, who was incapable to enactment for 17 months erstwhile her TED was astatine its peak, but who is present employed again.

Meanwhile, successful March, Jade had further country to close eyelid retraction (where the precocious eyelid pulls distant from the eyeball, causing the achromatic of the oculus to beryllium exposed – different effect of TED).

This was lone partially palmy and she’s since been told she volition request 2 much eyelid operations, arsenic she inactive can’t adjacent her oculus and is successful changeless pain.

‘It’s going to beryllium a agelong haul,’ says Jade. ‘TED tin beryllium viewed arsenic a insignificant occupation – but it doesn’t consciousness that mode if it happens to you.’

• For much accusation spell to tedct.org.uk