When Jade O’Saye first noticed a small blister on the white of her eye, she brushed it off as a harmless stye.
It didn’t seem like a big deal—until the blinking started to hurt.
What followed was months of escalating pain, swelling, and a complete transformation of her life.
Her right eye began to bulge, turn red, and look so inflamed that she couldn’t close it properly.
“It was painful and disfiguring,” says Jade, 40, who works as a procurement manager.
“People stared. I wore sunglasses to hide it, but one day at the GP’s office, I had to take them off and a woman said, ‘Did you know your eye is bulging?’ Everyone turned to look at me—I was horrified.”
Living in Newport, Shropshire with her partner Richard and his two children, Jade found herself losing independence, confidence, and even the ability to drive.
“I cried every day during a holiday.
I felt like a shell of who I used to be.”
The Unexpected Diagnosis That Turned Everything Upside Down
Jade finally went to A&E after the pain became unbearable.
Doctors quickly ruled out a stye and diagnosed her with thyroid eye disease (TED)—a rare condition where the immune system attacks the tissues around the eyes, causing swelling, pain, and bulging.
TED often shows up in people with thyroid issues.
In fact, about 80% of TED patients have hyperthyroidism, usually caused by Graves’ disease, just like Jade.
But not everyone with a thyroid disorder will develop TED—and risk factors like smoking, genetics, and stress can increase the likelihood.
More common in women aged 40 to 60, TED affects around 50,000 people in the UK and can severely impact daily life.
What TED Really Does to the Eyes and Body
According to eye specialist Professor Bernie Chang, TED typically causes dry eyes, pain behind the eyes (especially when looking up), and sensitivity to light.
“The swelling pushes the eyeballs forward, which is why they bulge out,” he explains.
Although rare, in about 5% of cases TED can even compress the optic nerve and cause vision loss.
But for many, the emotional toll is just as crushing.
“I see patients crying in my clinic all the time,” says Miss Vickie Lee, a specialist at Imperial College Healthcare NHS Trust.
One large study in Denmark found that people with TED were nearly three times more likely to consider suicide compared to those without the condition.
Steroids, Supplements, and Surgery: Common Treatments
After her diagnosis, Jade began standard treatment with steroids, often used to control inflammation in TED.
These are usually delivered through an IV drip once a week over 12 weeks.
“It doesn’t cure TED,” Professor Chang says, “but it calms the inflammation until it burns out—which can take one to two years.”
Other treatments include selenium supplements, eye drops, immune-suppressing drugs, and in more serious cases, radiotherapy or surgical removal of the thyroid gland.
When Nothing Worked, Jade Took a Drastic Step
For Jade, the usual treatments didn’t bring relief.
Her eyes were so sensitive she wore mountaineering goggles outside just to protect them from wind and dust. “People laughed at me,” she recalls.
“Without the support of my loved ones, I don’t know how I would’ve coped.”
She chose to have her thyroid removed in May 2024.
While that helped with some symptoms of Graves’ disease, her eyes were still severely swollen and painful.
The Surgery That Gave Her Some Hope
In January, Jade underwent a four-hour decompression surgery.
Surgeons removed bone and fat from around her eye to relieve pressure and reduce the bulge.
“When they took the bandages off, I looked like I’d been in a fight,” she jokes.
The procedure isn’t without risks—there’s a chance of double vision, numbness, and even blindness.
Still, Jade kept going.
She had another surgery in March to correct her eyelid, which was pulling away from her eye.
But even now, she’s in pain and will need two more operations to fix it completely.
“It’s a long road,” she says. “TED might sound minor to some people—but if you’re the one living through it, it’s anything but.”
A New Drug Brings a Glimmer of Hope
While Jade took the surgical path, others are exploring new drug treatments.
One of the most promising is teprotumumab, a targeted drug still undergoing trials in the UK.
Yvonne Alexander, 50, was one of the first in the country to try it.
Diagnosed with Graves’ disease in 2022, she developed TED shortly after.
“I noticed my eyes bulging in holiday photos,” she says.
Too scared to face surgery, she joined a clinical trial led by Miss Lee.
The drug works by blocking a growth receptor in the eye tissue that’s overactive in TED patients.
“If you block it, the swelling stops,” explains Professor Chang.
Trials show it works in over 80% of patients and may even reduce swelling, which steroids don’t typically do.
The Catch? It’s Still in Trials
Teprotumumab isn’t widely available yet.
Patients can only access it through clinical trials, and like any drug, it has side effects—including hearing loss and flare-ups.
But for Yvonne, the benefits were worth it.
After eight doses, her eyes looked normal again, and she returned to work after being off for 17 months.
Living with TED Is a Battle—But One Worth Fighting
Jade’s journey isn’t over.
The surgeries, the emotional toll, the ongoing pain—they’ve taken so much.
But she’s still pushing through.
“People underestimate this condition,” she says.
“But if it happens to you, you realize just how serious it is.”