Sunday, 29 November 2015
Why are treatment outcomes so bad?
Doctors excel at making statements about what Addison's treatment results should be.
"Addison's should no longer be fatal"
"There is no reason why someone with Addison's disease couldn't climb Mount Everest"
The reality is quite different
The largest study I have come across found a mortality rate in some males more than double that of the general population, and a reduction in life expectancy of 11.2 years.
A recent study conceded that "quality of life in adrenal insufficiency is more severely impaired than previously thought and patients .. are also threatened by an increased mortality"
Fatigue is rampant.
I have scoured the English language internet for successful people with Addison's disease. I was never very athletic at school but I am keen to improve and learn from people who have done well.
Being competitive, I would love to find people who who are doing better than me so that I have something to aim for. I would hate to think that how I am now is as good as it gets for people my age with Addison's.
The news is not good.
Many of the hero patients that my endocrinologist recommended that I follow 18 years ago are now beached whales, performing much worse than me, or dead. Success at age 40 obviously does not guarantee success in later life if you follow standard medical advice.
The Addisonians that are running fast, rock climbing and BC skiing are all much younger than me. I note that their regular daily steroid regimen (as opposed to competition day practice) is quite different from what Australian endocrinologists recommend in nearly all cases.
If you are looking for people with Addison's and diabetes getting out there and doing stuff, forget it. I found one older guy who seems to have his act together. From what he has written, I surmise that his diet and drug management are also vastly different from what Australian doctors currently recommend.
The internet evidence is consistent. If you follow standard medical advice, you are unlikely to do very well, and will plagued by fatigue, particularly as you get older.