Andrew's Story

Anrew 12 Months After The OpIn March 2017, I was diagnosed with an extremely rare four cm wide macro adenoma (benign) tumour on my pituitary gland.

For those that don’t know, the pituitary gland is your hormone controlling gland which sits about 10 centimetres behind the ridge of your nose and is connected to the base of your brain. It controls the production of hormones that allows your body and mind to function normally, including the life dependency hormone cortisol.

There is currently an extreme lack of awareness and understanding about this vital pea sized gland. Three years ago, whilst I had heard of it, I would not have been able to explain what it does. Considering up to 20% of people have a tumour of this type without actually ever knowing about it, the awareness of the condition and its’ potential symptoms really does need to improve.

And this unawareness also includes many people in the medical profession. I became aware of a problem when the sight in my right eye started to deteriorate quite badly in 2014. I first noticed it when playing football under flood lights as one side of my vision seemed darker than the other. However, my tumour was not found for almost 3 years. Doctors and Opticians, including two leading eye consultants in the north west just assumed that the problem was with the eye itself but nothing was found to be wrong with that apart from a very slight tear in the retina which they decided was causing the problem. However, as my eye sight got to the point where I thought I was going blind, I was finally sent for an MRI brain scan by the second eye consultant and this scan revealed the size-able but fortunately benign pituitary gland tumour that was pressing on my right optic nerve and causing the vision defect. 

After numerous blood tests, the results confirmed it was not only sizeable but it was also an extremely rare type of tumour, producing dangerously excessive levels of growth hormone IGF-1 and the thyroid stimulating hormone TSH. This was causing other symptoms including headaches, heart palpitations, excessive sweating, general lethargy and weight gain. Whilst my neurosurgeon Mr Gnanalingham at the Salford Royal hospital, the coolest guy I’ve ever met by the way, wanted to operate straight away, it was deemed too risky for my heart due to the high level of TSH. So, I was prescribed medication to reduce this over a 3-month period. Towards the end of this period, I suddenly became very ill and was in bed for about a week. Another MRI confirmed that the tumour had actually bled (apoplexy) and so my planned operation was immediately brought forward. Fortunately, due to the success of the 4-hour op (90% of the tumour was removed through my nostril without removing any part of my actual pituitary gland) the vision has vastly improved and my hormone levels are generally back to normal.

As there is still some tumour mass remaining on the optic nerve today, I need to have regular MRI scans, visual field and blood tests for the rest of my life due to the risk that it could grow again and produce further sight problems and excessive hormone levels. That being said, I live a normal active life with my young family. I run regularly and have recently returned to playing football again. So, I’m very happy!

The real point of me telling my story is to help raise awareness of this condition and how to possibly identify if you might have it yourself one day. For more information, please visit the website of the fantastic National UK charity, The Pituitary Foundation and see how they help raise substantial funds to support patients of this rare condition.