Crushed by Cushing’s but winning at life

A benign pituitary tumour triggered Cushing’s syndrome, ballooning my previously fit and healthy 12 stone body, to just under 30 stone.

I was 41, fit and healthy but – at 12 stone – felt I needed to get leaner. So, I joined a slimming group, ate well and exercised five days a week with Zumba, boot camps and fight clubs. ‘This must work!’ I thought. But no, my weight climbed. Accusations of being a secret eater were levelled by my family, friends and personal trainer.

Accusations of being a secret eater were levelled by my family, friends and personal trainer.

Discovering Cushing’s and understanding the symptoms

My sister, Jackie, developed a neck lump; they investigated for non-hereditary Cushing’s, which our mother died of at 49. Jackie said I had the symptoms: blinding headaches a ‘moon face’, a ‘buffalo hump’ (a lump of fat at the top of my back between my shoulders), upper body obesity but thin arms and legs, balding, high blood pressure and menstrual irregularities.

I was now 29st 11lbs. I could no longer walk, let alone box. My son and dependent, Lewis, was only 12. My GP put it down to weight gain when, in truth, it was a sign and symptom of Cushing’s.

Eventually, the GP made the diagnosis: a pituitary tumour. This had released excessive cortisol, causing Cushing’s syndrome and my ballooning weight. The diagnosis brought back painful memories of losing my mother and new fears that Lewis would suffer the same.

The pituitary tumour was removed through my nose

Six hours of surgery removed the tumour through my nose, and I began my life-long steroid treatment. Lewis was – and remains – my rock. He cared for me in the early days, always looks out for me and will inject me in a crisis. If my cortisol dips too much, my body shuts down and I get blue lighted to hospital; a dozen times last year.

Getting my life back has been rocky

Back home I re-joined a weight loss support group. The weight dropped off and I lost over 17 stone in five years. Then, a setback; my malfunctioning pituitary caused excess bleeding and I gained back two stone. I needed a hysterectomy.

I have loose skin, which rubs, causing infections due to a depleted and fragile immune system. But I’m back losing weight and just returned to Zumba, boxing and I’m looking for boot camps. My great team at UCL monitors me regularly. Surgery is scheduled to remove the excess loose skin – which weighs over a stone.

I will be 49 in 2021, like my mother was when she died. I have paid for my 50th or my wake, whichever comes first. I am realistic but I am a fighter