Steven’ story: A Cushing’s diagnosis after unexplained weight gain

I first noticed that something was wrong when I started to gain weight. I used to play football on a Monday, did spin classes on Tuesday, Wednesday, Thursday, Metafit on Friday and golf on Saturdays – Sundays were a rest day. I only ate on chicken, eggs and rice, yet I kept getting heavier. The doctors kept saying it was down to me so I continued this diet for 3 years.

I was then diagnosed with diabetes, and also started to experience high blood pressure and a round, red face. I was still told that it was due to my lifestyle, event though I tried to explain the amount of exercise that I was doing.

After about 6 years of these unexplained symptoms, one morning I was getting ready for work and I passed out in the living room. My wife found me around an hour later when she got up from work. The doctor I was seeing for diabetes, at Russells Hall Hospital in Dudley, suggested that I might have Cushing’s disease. I was sent for an MRI and they found a tumour on my pituitary gland. 

I then had two operations. Unfortunately, the first was unsuccessful, so I had a second operation where the pituitary gland was removed as well. During the operation I experienced a leak in the brain, so they had to remove some muscle from my leg and use it to bung the two holes up.

There was a few cells of the tumour remaining and it ended up growing back to 1cm. I then had 6 weeks of radiotherapy every day. As well as lots of blood tests and urine tests for my cortisol levels.

When I was first diagnosed my cortisol level was 1100, and now it just under 450.

I am still struggling with symptoms but I have lost nearly 8 stone.

I just wish I was ‘normal’ again as I just don’t have the energy to do anything. I can no longer do fitness or golf. If I do any big walks with the dog then I’m tired for days after.

I really think if doctors had listened to me at the start I would not have got so bad and would not be suffering now still.