Lawrie's story - journey of pituitary tumour diagnosis

My name is Lawrie. I am 70 and I have been married to Brenda for nearly 50 years. I have always been very active and  I love bowling, dancing and gardening.  We have a daughter, Jo, and two lovely granddaughters, Beth and Erin. 

Lawrie Feb 2017

This is my journey before and after being diagnosed with a pituitary tumour. My story began in 1992. I was driving home on the M1 when I noticed a shadow over one of my eyes as I was overtaking a vehicle.

On the hard shoulder I noticed that it disappeared and then reappeared. I made an appointment with an optician who told me it could possibly be a neurological problem and referred me to Moorfields in London. I went straight there to the walk in clinic and was told I could possibly have inflammation of the optic nerve, or a pituitary tumour and would need further extensive tests. After this I was referred to The National Hospital Queens Square. I couldn’t imagine that I had a pituitary tumour. When the doctor came in after the brain scan and saw me he said ‘I afraid you have a tumour and we are going to admit you straight away - you need emergency surgery to save your eyesight.

I was under the care of Michael Powell who performed the operation the next week and I was discharged three days later and convalesced. I had a follow up appointment with Mr Powell who said the operation had been a success but he could not remove the root and I would need radiotherapy in the future. I was put on a high dose of hydrocortisone as soon as I had my operation but after scans and a check-up I was taken off the tablets. I would continue to be monitored.

The next year, 1994 - I was sent to the Middlesex hospital where I was then measured for my mask and started a 6 week programme of radiotherapy. I felt tired afterwards but had my treatment in the morning and went back to work in the afternoon – I tried not to give in.

I had a good few years where I went for check-ups and had no problems. My daughter, Jo, got married to Paul and I have two wonderful granddaughters, Beth and Erin and I felt very lucky to have no problems.

In 2006, at my yearly check-up, I meet Dr Stephanie Baldeweg who commented that I looked tired. I had recently retired and was looking forward to a busy year, she suggested that I have a gold standard test that would check how my cortisol levels were working. After the results I was put on Thyroxine. At this point, I was having brain scans every 5 years and everything was fine. I had just had my 70th birthday celebration with my wife Brenda who is also 70 this year. I felt particularly tired and not myself so the endocrine doctors at University College Hospital decided to do a glucagon test which measures the cortisol level in the blood. I received the results by phone which told me what I had suspected that I now needed hydrocortisone replacement which I started straight away.

My wife and I went on holiday to Ironbridge for a few days on my return. I felt fine but a couple of days afterwards I started to feel off colour with back ache and tummy cramps which came and went. I took extra hydrocortisone but didn't realise what was round the corner. I went to the out of hours doctor who thought I had picked up a virus. She asked for a urine sample and told me to take paracetamol and Buscapan.  I went home and had a good night sleep but when I woke in the morning I felt light headed with a back and tummy ache. My wife was very concerned as I felt sick, light headed and dizzy. She said she was going to phone for help when all of a sudden I went rigid and had a seizure. My wife phone 999 and put me in the recovery position. 2 ambulances arrived with 4 crew!

I was taken to Watford General Hospital and do not remember anything of this.  I woke up in intensive care where I was for 4 days after which I was transferred to a ward for 5 days. I was told I had an Addison crisis and am now recovering at home.  I will be going to the University College hospital endocrine department for follow up appointments.

This is a cautionary tale - we were aware of this condition, but we missed the signs. I thought I had minor tummy pains. It is a very serious condition and both the hospital and my GP said I am lucky to have survived. I am lucky that my wife Brenda was at home and able to get help so beware - it creeps up on you and bang!  It’s upon you - so please beware it can happen to anyone and don’t ignore the signs.  

I would like to thank the ambulance crew, doctors and nurses at Watford General Hospital, my GP Dr McHugh and lastly my wife Brenda who is my angel.  I am looking forward to celebrating my golden wedding with family and friends next April.

 

Lawrence Stebbeds