In February 2013 I was diagnosed with Cushing’s disease. Over the past 6 years, I have suffered from a variety of problems including Deep Vein Thrombosis and a Pulmonary Embolism, compressed fracture of the spine (probably due to osteoporosis), torn achilles, ruptured achilles, several ulcers in my legs, hypertension, high cholesterol and atrial fibrillation. Prior to that, I had no significant medical problems.

I have also put on 10kg (22pound) in weight. Up to 2007, I was a little overweight but very fit, taking part in distance running including a half marathon. My training routine lessoned and I put on weight. I also started getting injuries which limited my ability to train. My legs have become very weak and have that ache that you get from working out – something which I have had to discontinue due to the weakness. Climbing stairs in particular is difficult. The fracture in my spine causes sciatica which is very painful. I have lost strength in my arms as well as my legs.

When I was diagnosed with Cushing’s, I had never heard of it and, of course, got busy on the internet and read about the symptoms, causes and cures. I found myself hoping to have the disease which is bizarre given the seriousness of the condition and the havoc it causes on the body. The fact that it is not only curable but most of the problems are reversible offers me a quality of life that I thought I could never have again.

I underwent testing to confirm I had Cushing’s syndrome and the particular form I had (turned out to be Cushing’s disease). I had extremely high levels of cortisol and a combination of the cortisol and dexamethasone used for testing sent me into a manic state. I had turns where I couldn’t speak. These lasted for about a minute and I had many of them. I went to the hospital by ambulance and was admitted. I remained in hospital for 9 weeks, the first 5 of which I was in a manic state. I can’t remember much about that but from all reports I was a very difficult patient. The medical staff tried a variety of treatments until they finally found one which worked.

The medical treatment I received was excellent and my wife, Deborah, supported me all along (and that was no easy task). While this was happening, I had several MRI scans on my pituitary gland which failed to find the tumor.

My spell in hospital weakened me to the stage where I was in a wheelchair. I took on rehabilitation and am now walking unaided, albeit with a limp. All in all my health has improved dramatically. Last week I had my first game of golf in 6 months, so things are definitely improving.

My doctors have decided that they could not operate on me due to my poor health and the fact that they could not find the tumor. As a temporary measure I am taking ketoconozole to control my cortisol levels. That is working well and I am beginning to show signs that the symptoms of Cushing’s are reversing (loss of weight and, moon face going and strength returning). However, it is not a drug which should be taken for long periods, and we are hoping that the tumor shows in future scans.

I celebrated my 60th birthday in July and had a function which was attended by many friends, including quite a few from interstate. My wife and I are now planning a cruise in SE Asia later in the year. For me it is a waiting game to see how it all turns out. I’d love to hear from others, particularly anyone in Australia.

Member: 132077
Newsletter: Winter, 2013
Country: Australia