I saw a rare health condition on TikTok. It turns out I had it

“Do you have these symptoms?” it asked. I was reading a checklist of my life.

(Credit: Cleo Lambert)

By Cleo Lambert

Looking back, it probably started about 2.5 years ago, but you don’t wake up and realise everything in one moment.

The first thing I noticed was when my hairdresser pointed out how thin my hair had become. It didn’t make sense - my hair had always been thick.

My hair before and after it started thinning (Credit: Cleo Lambert)

I had just returned to the UK from a trip to Australia and settled into a flat with my best friend. I was working full-time whilst waiting to start university the following year.

As well as the change with my hair, my weight kept creeping up, despite me going to the gym five times a week and eating healthily. I had painful bloating after most meals. I blamed the contraceptive pill and stopped taking it, but nothing changed.

Tracking my bloating before and after eating (Credit: Cleo Lambert)

Doctors thought I had polycystic ovary syndrome (PCOS). Whilst it isn’t curable, I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise – but my symptoms only got worse.

By February 2024, things were spiraling. My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms: nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts. I got a tattoo – something I’d done before without issue – and my arm was bruised for weeks. 

Bruising from my tattoo (Credit: Cleo Lambert)

I hated how I looked and stopped wanting to leave the house. The most frustrating part was not having any answers. No one said I looked different except my older sister, and I appreciated her honesty. If it had been the other way around, I’d have said the same.

I was desperate for answers. I felt like I was in someone else’s body and I knew there was something wrong, but felt helpless not understanding what it was, so I begged for more blood tests.

They confirmed that my hormone levels had tripled and I was referred to an endocrinologist (medical doctors who specialise in disorders of the endocrine system) but the appointment wouldn’t be for another 12 weeks.

Before that, in a TikTok scrolling session, I saw a video:

“Do you have these symptoms?” it asked.

Extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places.

I was reading a checklist of my life.

(Credit: Cleo Lambert)

In the comments, people mentioned something called Cushing’s syndrome. I Googled it and immediately knew: this was me. 

It was such a relief to finally see something that made sense and for the first time in a while, I felt confident that something could change. During my 12-week wait for my appointment, I was in a researching rabbit hole, deep into a corner of health I’d never even considered before.

I arrived at my long awaited appointment in July 2024, armed with a list of my symptoms. The doctor agreed, “You probably have Cushing’s.” Finally, an answer.

Cushing’s syndrome, which actress Amy Schumer recently revealed she has, happens when your body produces too much cortisol – the stress hormone. The tests confirmed my cortisol levels were through the roof: 1,334 on one measure, where the normal level is around 135.

My 24hr urine free cortisol was 1334, average is about 135 (Credit: Cleo Lambert)

Cushing’s can be caused by a tumour on the adrenal glands or the pituitary gland in the brain. 

Doctors told me the tumours are “usually between 3-4cm, 5cm is more serious.”

My tumour was 17cm and pushing up against my stomach and growing into my liver. It had likely been growing for years and there was a chance it could even be cancerous.

An x-ray showing the size of my tumour (Credit: Cleo Lambert)

The good news, I read, was that once the tumour was removed, the symptoms would disappear. I felt so hopeful: I’d have a quick surgery, be in and out in a few days, my symptoms will go away and I’d be fine. 

Just two months later, I had the surgery to remove the tumour and my adrenal gland (you have two). Whilst I spent 10 difficult days recovering in the hospital, the tumour was sent off for a biopsy. The biopsy confirmed it was cancerous. It had spread to my liver and I needed chemotherapy. 

During this time, a doctor told me I’d probably saved a year of time based on how long a Cushing’s diagnosis could typically take. I think if I’d waited another year, with the size the tumour already was, I'd be dead.

One of my many trips to hospital (Credit: Cleo Lambert)

That’s where we’re up to in my story. Right now, my life is on pause while I complete my chemo, moving between the hospital and my parents’s house. I was supposed to start university to study fashion buying and merchandising, but I had to defer.

I’d been independent, but now, I can’t even go on holiday. My friends are finishing uni, turning 21, travelling – so sitting back during this exciting time of my life is particularly hard. It’s okay, I can press play again, but it’s annoying. I’m 21, and I want to be doing all the things my friends are doing.

On holiday with my friend in 2023 (Credit: Cleo Lambert)

TikTok has played another role in my health journey. It helped me connect with a girl who’d been through almost the exact same thing - first misdiagnosed with PCOS, then later discovering she had Cushing’s too. Finding people my age going through similar experiences has been incredibly reassuring.

While the UK’s National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it. I’d often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldn’t.

If all goes well, I’ll finish my chemo in May and start uni in September - if I’m strong enough. Most of all I can’t wait to go on holiday, to move back into my flat and be active again.

Perspective is so interesting. When your health is at stake, you don’t worry about anything else. If you’d told me everything I was about to go through, I would’ve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.

So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok. ;)

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