My Addison’s story

By:  Alan  Wednesday, 9. July 2003

I am now 64 and will soon collect my pension – at last, riches beyond my wildest dreams! The Addison’s was diagnosed in 1960, when I was 20, so I have lived with it for more than 40 years now.

I am lucky.  Although I have had a variety of health problems – including heart by-pass surgery on two occasions – I have had good medical care and still live a full and active life.

I have also been lucky with the Addison’s. I have learnt to control it and listen to my body. I have been taking the same dose of medication now for over 30 years: 60 mg hydrocortisone plus 50 mcg fludrocortisone (half a tablet a day). I am told that 60 mg of cortisone a day is quite a large dose. But I am 6 feet 4 inches and 14 stone, which may have something to do with it. 

(Editor’s note: this is almost double the dose that most endocrinologists would recommend today, even for a large man. This high dose may go some way to explain Alan’s stamina and ability to shrug off injuries).

I was born in Romania in 1938 and lived with my English parents, an elder brother and sister. My father worked in the Ploiesti oil fields as an engineer. We travelled back to Britain through Europe a few weeks before war was declared.

I had an ordinary childhood in suburban Surrey; apart from a bout of pneumonia at the age of four I was a fairly healthy child. My school days were mixed and I did not shine at any particular subject apart from in the art room. Therefore, on leaving school I started a course at Epsom Art School studying fine art and illustration. Then on to Wimbledon School of Art for a graphic design or ‘commercial art’ course, as it was then known.

I was now about 19 years old and started being rather lethargic and lacking energy and enthusiasm for life, which is not right for someone of that age. I tried to break into the commercial art world but I expect I did not come across very well due to my loss of drive. People just thought I was lazy. ‘Pull yourself together’ was the phrase I frequently heard.

I started to suffer from fainting fits if I stood up for too long. This was put down to ‘outgrowing my strength’. When staying with my uncle for a few days I fainted in church one Sunday morning. He insisted I see a doctor at once. Luckily, there was a new GP, fresh from Guy’s Hospital, who immediately came up with the idea that I had a rare condition called Addison’s Disease. Apart from general weakness, lack of energy and drive, I also had other symptoms: slightly blue gums and a tanned complexion (although I always was quite dark as a child).

I was seen at Guy’s Hospital, London, by a Dr Bishop.   At that time, 1960, he was perhaps the foremost endocrinologist in England.  Coincidentally, Guy’s is where Thomas Addison, who discovered the disease, did much of his research.

Dr Bishop confirmed that I did have Addison’s disease and I was admitted into Guy’s within a few days. I then went through a series of tests to try and kick start my adrenal glands, including intermuscular injections every six hours plus implants under the skin. I started on a course of cortisol and started to feel livelier. One sign of this was an increase in awareness of my surroundings i.e. pretty nurses! On leaving Guy’s six weeks later I started dating a night nurse and a staff nurse.

The use of cortisol to combat the effects of the disease was still only in its infancy. A high- profile case at that time was President Kennedy. The main problem I had when I came out of hospital was a tendency to overheat. I would come out in a hot flush and be unable to control it. This sometimes resulted in me fainting and having a mini-crisis due to lack of cortisol. It could happen in a cinema or travelling on a crowded tube train. Although I have not had this problem for many years I still hate travelling in tubes as the memories come back.

As I had not made any headway as an artist I started working in retail shops in the stationery business. First at Foyles and then Rymans where I became an assistant manager. From there I moved into selling printing and design for a major print group. I married in 1966 and then joined Revlon the cosmetic company in the sales promotion department. I worked on creating and producing in-store promotions and point-of-sale material. At last my creative skills plus my knowledge of the retail market could be useful.

For most of the time, apart from bouts of unexplained stomach cramps and this tendency to overheat, I did not have too many problems with the illness. In 1970 I was put on a new dosage of 60 mg hydrocortisone plus 50 mcg fludrocortisone. I found that this new type of medication was absorbed into the body more quickly than the cortisone acetate I had been taking and I was able to control things better. I learnt to vary my dose sometimes, depending on how I felt. If I had a bad cold or was under heavy stress I would increase the dose or bring my evening dose (20 mg) earlier in the day.

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