Well, all pituitary patients have a story to tell, from how they first noticed peculiar changes, to eventually being diagnosed and treated. Here's my account.
Background...
I was born in August 1969 just outside Pontypridd in South Wales, UK. When I was born, the midwife told my mother that she had 'a lovely little boy - but he's got big feet!'. Also, I was born without a sense of smell, although it was many years later before I realised this. Thus, looking back, I suspect that I had a pituitary problem from birth, although no-one has ever confirmed this.
| Around the age of eight, I started to grow more quickly than normal. Gradually, over a period of about 3 years, I went from being one of the youngest and therefore smallest in my class at school to the tallest. At the age of 11, I was tall, strong, and full of energy. I was 5 foot 6½ in height with large hands and size 11 feet, and probably due to an excess of growth hormone, I felt on top of the world. I enjoyed playing sport, and had even started jogging in the local park! At this time I had no idea of any illness I had. |
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I went on to secondary school (having just turned 11) and for a while things carried on as normal. Still full of energy, I played football, rugby and cross country for the school. Life was great! |
Symptoms...
After about 6 months of secondary school, my eyesight deteriorated slightly, so I started to wear glasses again (originally prescribed for a lazy eye). Over the following few months, my eyesight got worse, and although being very sporty, I suffered from numerous joint pains, mainly in the legs. Doctors at the time put this down to 'growing pains' - I suppose they were right in a way! One doctor put my joint pains down to me having flat feet! Hopefully doctors are more aware of pituitary disorders these days....
As the end of my first year in secondary school approached (still aged 11), my eyesight deteriorated even more, and severe headaches set in. My schoolwork began to suffer, and during each lesson I tried to move closer to the board just to see what the teacher had written. I knew something was wrong, but didn't know what to say or do...
The headaches got worse and I was treated for migraine, even though, at the age of 11, I was bigger than the doctor! I can remember sitting in bed in June/July 1981 trying to watch the Wimbledon tennis tournament on tv - but I couldn't see a thing. By this stage my eyesight was poor, and I became slightly confused. After a particularly bad night, I was taken to hospital and a CAT scan revealed a large tumour on the pituitary gland.
Operation...
| The entire gland was removed in July 1981, followed by 5 weeks of radiotherapy. And everything was explained - the incredible growth rate and energy levels seen in previous years was due to a tumour on the pituitary gland that caused it to produce excess growth hormone. I was the youngest giant ever known! (at the time, anyway). The headaches and loss of vision were due to the pituitary gland and tumour pressing on the optic nerve. When the gland was removed, the headaches disappeared and my vision returned (and then the fun started!). |
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Post Operation...
The first thing I remember after waking from the operation was that I was starving! Previously, before the operation, I was given a sweek pink drink to take. Obviously it contained something to send me into a deep sleep. And it worked, as the next thing I knew I was awake, looking at the ceiling, with my mother by my side, wondering what I could eat. Fortunately dinner was being served, and today it just happened to be fish & chips on the menu! My mother fed me mouthful by mouthful until it had all gone - wonderful!
I spent a couple of weeks after that in the childrens ward recovering, and generally felt quite good. The biggest shock was finding out I'd lost all of my hair. When the bandages were removed from my head, I went to the bathroom and saw myself in the mirror for the first time. I almost cried. My hair had gone, and my head was a strange colour, with huge scarring where the surgeon had to cut.
While still in the childrens ward, I remember being paraded in front of a roomful of doctors one day, wheeled there in a chair by a kind nurse.
Apparently, at the time anyway, I was a rare discovery. And it seemed from the questions asked and the eyebrows raised that I had the biggest
feet in the room! One doctor even compared hand sizes with me and walked away defeated....!
Radiotherapy...
After leaving hospital I embarked on 5 weeks of radiotherapy treatment in Felindre hospital, Cardiff, throughout the summer (August) of 1981. Although the treatment is painless, it leaves you feeling extremely tired, combined with a loss of appetite and a feeling of general sickness. All this is accompanied by a fair bit of weight loss too.
The next few months...
Well, these were interesting times for me to say the least...On the advice of the headmaster of my secondary school, Mr. James, I stayed home from
school and missed the start of my second year. Instead I had a home tutor - Mrs Squire - who taught me English, Maths and French
amongst other things, from September through to December. Although it was strange at the time, having a home tutor gave me time to recover and rebuild my confidence. I am ever grateful to her for being so patient and understanding with me.
After Christmas I went back to school, but this time back to the first year, again on the advice of the headmaster, to aid my recuperation.
The strange thing was from this moment on I was a completely different person. Formerley I was tall (tallest!) and strong (strongest!), popular with my friends, girls, and teachers alike. I had the ability to stand up for myself and was very good at sport too. Now, I was simply one of the crowd. My growth had stopped, my hair grew back slowly, and taking steroids and the rest of the HRT changed my physical appearance. I soon lost touch with my former friends as they were now 'a year older' than me. Still, I managed to blend into my new environment and made new friends. However, life would never be the same again...
School and puberty...
I managed to get through the rest of my school days quite well, although trying to find a balance of my medication often affected my school work
and concentration. The strangest thing was seeing my former schoolmates gradually growing up and becoming taller than me - this was hard to accept
as I knew my growth has stopped once the pituitary had been removed. It was not an easy time, but I got through it!
College Life...
Going to college gave me a new lease of life. I spent 3 years in Kent, England studying for a HND in Software Engineering. It was a chance to move away from home, meet new friends, and 'find myself'. By this time my hormone levels were very much in control and I was feeling good in myself so quality of life was good and stable.
One of the biggest problems of being a teenager without a pituitary gland was seeing my schoolmates grow and develop through puberty. Many of them outgrew me and developed far stronger facial features etc. and muscle strength than I had. This was difficult to accept at times. Allthough HRT worked for me, I wasn't growing in height and any other changes seemed much milder than everyone else...
So going away to college gave me a fresh start in life. Nobody knew my past, and I didn't feel the need to compare myself so much to my new college mates in terms of height etc. I missed home and my family while I was away, but overall the experience did me the world of good.
Oh and I passed!
First job and married life...
I started my first job as a computer programmer in Reading, England in 1991. I found it difficult to find work in Wales at the time - there wasn't that much around for my skills and anything that was suitable required experience, which I never had. So after one or two interviews, I accepted the post in Reading and moved away to England.
Soon afterwards I met my wife to be. We got married, rented a flat for a while then eventually bought a flat just outside of the town.
And the good news is I spent 6 happy years working in Reading. I enjoyed the work and the people I worked with. After about 4 years there I was promoted to a senior programmer with more responsibilites.
I decided after six years that I wanted to move back home to Wales. Reading had been good to me, but it wasn't home, and we wanted to start a family. I was fortunate to get a job with Dow Corning in Barry, Wales, so we sold the flat and moved home!
And today...
Unfortunately the plan never quite worked out. The HRT to help us start a family never worked. I was always told that when I was ready to start a family, all I had to do was call the local hospital and they would prescribe the relevant HRT to start the process. After 2 years of injecting LH and LSH it became apparent that my sperm producing cells had become 'dormant' and therefore would never give us the family we wanted. We'd left it too long. This was very difficult to accept, and still is at times...I can only imagine what our children would look like...
Apart from that, I can't really complain. Yes I miss not having children, so much so it hurts at times. But, I am alive and well to tell the tale, enjoying life, and my medication I take is all under control...so I can't really complain!