Robert's Story

I had a good upbringing but my dad developed a mental health problem and lost his job when I was very young. It was a shame as he was a Technician Electrical Engineer  and made good money. My mother was a Clerk short hand typist and worked hard to look after me and my brothers and my dad.  My two brothers have good jobs one is a Engineer and the other is a Manager.

When I was 10 years old I was hit over the head with a golf club and needed stitches.

When I was 12 years old I got a paper round then after 6 months I decided to set up my own paper rounds. I delivered the morning papers before school then the evening papers after school, I did this Monday – Sunday and on a Saturday evening I sold the racing sport papers to men in the local pubs.

I cycled Land’s end to John O’Groats when I was 15 years old with my uncle. We cycled 977 miles and cycled it in just 9 days. We raised £1000 for the Chest, Heart & Stroke Charity.

I did work experience at Wm Low when I was 15 as I really enjoyed baking.  The Manager gave me a Saturday job and I worked there till I was 16.

I left school when I was 16 with six standard grades and got an apprenticeship as a baker with Scotmid. It wasn’t the kind of bakery where you could learn much as they bought a lot in frozen and I found it hard going having to cycle 10 miles at 5am to get there for 6am start  then 10 miles back home. I was too tired to go out with my friends on the weekend and became depressed so I left and got a apprenticeship with a local bakery which was great as they made everything from scratch. The bakery closed down a year later but luckily for me Wm Low were looking for a apprentice so I worked there till I was 21.

Tesco bought over Wm Low and changed the start time from 6am to 4am which was hard going. I left and worked in a small bakery for 2 years but they closed down. I then got a job as a baker at Safeway.

I started doing courses in 2002 and qualified as a fitness instructor, personal trainer, Weight-training instructor, g.p referrals, Swedish massage therapy, Sports massage therapy. I then went and did a HND in Health, Fitness & Exercise.

I competed in the 2004 British Natural Body-Building Championship and came 6th out of 30.

There was a gas explosion in my house in 2006 and I wasn’t physically injured but developed PTSD.

In 2008 I went from having a 6 pack to starting to put a lot of weigh on and went to my GP in December 2008 with swollen face, limbs and stomach, flu like symptoms and chronic fatigue and erectile disfunction. However nothing was done until I went back to see him in March 2009 with the same symptoms. The GP requested tests which indicated Pituitary insufficiencies.

I was referred to the Royal Infirmary of Edinburgh’s Endocrine clinic and Dr Stimson started me on Levothyroxine for my Thyroid insufficiency. He then did a Synacten test as my ACTH was undetectable. The test indicated I had adrenal insufficiency and I was started on Hydrocortisone.

I went back 3 months later, the swelling had gone away but I was still very over weight and fatigued. I was seen by the head of the clinic Dr Patrick who ran more tests which came back with Testosterone Still  being  too low and IGF-1 being low but he decided I would struggle with injecting myself with Growth Hormone medicine and that hydrocortisone and levothyroxine would do for now. There was no rationale for him coming to this decision other than the financial cost of the medicines.

I was seen annually by different Consultants up until 2016, I kept complaining of erectile disfunction and fatigue but nothing was done.

I had a nervous breakdown in 2012 and refused my medication, they did a synacthen test and my hydrocortisone was stopped but I still got my levothyroxine.

I contacted the Pituitary Foundation’s Nurse in 2015 an she advised me to get my g.p to run basic Pituitary tests, my g.p asked Dr Patrick who said No even though my g.p didn’t need his permission.

I did a Subject Access request for my medical file in 2015 and it came back that the last few years they hadn’t been checking testosterone, cortisol with ACTH, IGF-1. They were only checking my thyroid.

I then asked my GP to refer me to the Borders General Hospital, she copied in Dr Patrick and I got a letter saying they were not allowed to refer out of Lothian and that a second opinion had been made with Professor Walker. I went and seen Professor Walker but he refused to do a definitive test for GH deficiency.

I asked a different GP to refer me to the Borders General Hospital and she did. I was seen by Dr Williamson from the Borders General Hospital in 2016. She was lovely and ran basic tests.

I then found Joanna Lane who lost her son Christopher to a Pituitary gland illness in 2008, which she believes was caused by a pituitary gland illness.  She knew a Consultant in Salford Manchester called Dr Kearney and I went and I went to see her in 2017. I had got basic private tests conducted as Spire Edinburgh for her to look at when I was down to see her. She said the test warranted a definitive test for GH deficiency and I went in October 2017 to have a Glucagon Stress Test which came back with Severe Growth Hormone Deficeincy under <3.

Dr Kearney diagnosed me with having Traumatic Brain Injury related hypopituitarism.

Dr Kearney registered me with Salford hospital and I received a 9 month trial of Growth Hormone medicine and also Testosterone gel.  It made a huge difference to the quality of my life.

My health board NHS Lothian refused to take over the GH medicine but I still got Testosterone gel.

They said I can’t be under a English Consultant to receive the Growth Hormone medicine and that the Borders General Hospital was where I would need to go.

I went back and saw Dr Williamson at the Borders General Hospital, she said “ I will ask Dr Kearney for a copy of the Glucagon Stress Test and when I receive it I shall write you a prescription for Growth Hormone pens”.  Dr Williamson wrote a prescription but NHS Lothian refused to honour it as they said it’s for children only and that the NICE GH adult protocol was no longer valid in Scotland.

I researched this and it was still valid in Scotland but Lothian have put a clause in that your g.p or Consultant can ask the Lothian Joint Formally Board to consider authorising the medicine. So much for a end to “Postcode Lottery”

Dr Williamson said to me I want you to get the Growth Hormone medicine I will put it through my pharmacy which she did and I currently still receive the medicine through her.

The Pituitary gland is so complex when I was seen by Dr Kearney in 2017 my Cortisol was high and I got a test for Cushing’s disease which came back that I didn’t have it.

In 2018 I went to the Royal Infirmary of Edinburgh with swollen limbs and face and flu like symptoms but got told it was a long term chronic health problem and to see my g.p  I’m a size 9 and had to wear size 12 slipper as my feet were that swollen.

In 2019 Dr Williamson did a Synacthen test and I got started again on Hydrocortisone and after 3 months the swelling and flu like symptoms went away.

I’m on full hormone replacement it has made a huge difference to the Quality of my life however It’s not  a cure and I have good days and bad days and will never be like I was before it first started in 2008. The support of my Church and my parents and Joanna Lane has helped me, and since receiving growth hormone medicine I have made no more suicide attempts. I hope I never will.

Note: more stories of patients with pituitary condition can be found at

https://www.christopherlanetrust.org.uk/Personal-Stories/personal-stories.html