An article from the
October 2000 Newsletter.
A glimpse into the onset of Addison’s Disease in a boy diagnosed at 10yrs
age, and his unique life since then.
I was 3yrs old, when
we arrived in Perth, from Melbourne. My mother immediately took me to the
Children’s Hospital for treatment for oral thrush and infected chicken
pox. I was admitted for tests, which gave inconclusive results. There
seemed no explanation for my poor health, but Mum was assured that “ I’d
grow out of it”.
Several days later, the infection cleared. After this, several difficult
years followed. I had a string of mouth and eye infections, little
appetite, leg pains and general lassitude. In the Spring of 1967, aged 10,
my condition deteriorated. I began vomiting and turned brown.
My mother took me back to the hospital, and after an examination that
included a painful rectal exam, the doctor concluded that there was
nothing wrong with me. It was, as you may have guessed “all in my mind”.
My blood pressure was never taken. The nurse exclaimed that I didn’t
even have a temperature! ( it was only 34C). The doctor went on to
pronounce that all Australian boys are skinny and have a tan. Mum insisted
that I hadn’t seen the sun for months, and actively avoided the heat,
because I couldn’t cope with it.
My condition further
deteriorated, and by early January, 1968, I had been bedridden for over a
week, unable to keep any food down. A visiting family friend saw me, and
was horrified at my condition. She recommended a paediatrician, and urged
my mother to obtain a referral. The local GP wrote one, without argument,
and hoped the specialist could save me. The next available appointment was
in 10 days’ time. My Mum promptly broke down and said: “he will be
dead by then”. I got an appointment the following day. I am in no doubt,
that if it had been any other physician I would not be here today. As ill
as I was, I clearly remember how quickly he made his diagnosis, telling
Mum, if he was right, I could be saved. Less than an hour later, I was
admitted to his ward at the Children’s Hospital. By this stage I was
lapsing in and out of consciousness, and needed help to walk any distance.
I was weighed and tipped the scales at17kg. I was skin on bone. Later we
were told that I had been hours from becoming comatose. Repeatedly the
hospital staff tried to insert an I.V., but my veins kept
collapsing.
My specialist tried, and finally found a vein in my ankle. From that
moment on, as the fluids began, my condition improved. Tests confirmed my
doctor’s suspicions, (it was Addison’s Disease), and I was given
Hydrocortisone and Florinef. Over the next 2 weeks, my recovery was
dramatic. Subsequent tests revealed that my #parathyroid glands no longer
functioned, so I began taking Calcitriol (* Rocaltrol), and a Calcium
supplement (see * below).
All went well, until
1971, when I developed a severe infection in my left eye, which put me in
hospital for 5 weeks. During this time, everything was done to save the
sight in this eye, but even the experts couldn’t find the cause, or a
suitable treatment. The extent of the corneal ulceration destroyed the
vision in my left eye, and the infection then moved to the right eye. The
30 years since then , have been an ongoing battle to preserve the sight in
my right eye. And still the experts don’t know the cause. My personal
opinion is that it is an auto-immune process. Since my late teens, I have
been plagued with alopecia ( - hair loss). At times, I have had between
1-4 bald spots, each the size of a 50c piece. They can last for up to 2
yrs, regrowing eventually. Another spot will appear in a new area. My body
also suffers similarly. I once had no eyebrows for 3 yrs. About 20 yrs
ago, I developed arthritis in my right thumb. Progressively painful
arthritis has developed to varying degrees in almost every joint. This is
partly alleviated by NSAIDS ( - Non Steroidal Anti-Inflammatory Drugs),
but their efficacy is diminishing, as my symptoms increase. I have quite
low hormone levels, but am not on supplements for this. I feel quite
strongly about this area of medicine, and have been frustrated at the lack
of information, and availability of hormone-based treatments for endocrine
disease processes.
Despite my low calcium level, my BMD ( Bone Mineral Density) is O.K. I
have had high cholesterol for years, and take Jezil to control it. I am
currently on 11/2 – 2 Florinef, 11/2 Cortate, 4 Rocaltrol, 4 Calsup, and
numerous vitamins, minerals and herbal supplements per day. I suffer
periodic bouts of cardiac arrhythmia, ( rapid heart beat), which leave me
short of breath and dizzy. I do tire easily, and seem to have little
stamina, despite sleeping 10-11 hrs/night.
After working for 20yrs in a government office, ‘I called it a day’, when a doctor helped me realise that I wasn’t coping too well. I now live the life of a retired gent, albeit a little earlier than I had planned. It is a full life, looking after myself and my elderly mother. I cannot criticise the medical profession, as it was a doctor who saved my life. It must be remembered that our genetic instruction manual contains over 3 billion specifications. I only wish some medicos were more humbled by the overwhelming complexity that is the human body. Sometimes I imagine putting the mind of a normal, healthy person inside my body, and wonder how they would feel and think about being like this. I’m not even sure I would know what “normal” feels like any more. I think I have had Addison’s all my life. I have tried to be objective, and concise. It’s hard to compress 40 years of experience into about 1000 words. On reading this, it might seem somewhat depressing. But I am still the same cheeky 10 year old who, more than 30 years ago, recognised the doctor doing his hospital rounds, (as the one who told me nothing was wrong with me), and called out “ I really shouldn’t be in here doctor. It’s all in my mind!”
NB. Paul also has Hypoparathyroidism as well as Addison’s Disease. The parathyroid glands normally control the metabolism of calcium and phosphorus. His requirement for calcium is greater than someone with functioning parathyroid glands. * Normally one would not take a calcium supplement as well as Rocaltrol/Calcitriol.
