Insulinoma Support Network

Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.


Graham's Story


Graham, from Tewkesbury, UK, was diagnosed with a benign insulinoma in 2006.

Insulinoma, directly, and indirectly has been part of my life for the past 20 years.

Until 2006 I led a relatively normal life, I had a high-pressure executive job in London and lived 100 miles away in the Cotswolds, either staying in London in the week or travelling daily. Prior to 2006 various ‘incidents’ occurred, which on reflection and discussion with various eminent medical professionals, coupled with stats from other cases and my own recollection of events have enabled me to paint a picture of my life leading up to and after the discovery of my Insulinoma.

Working in London, sometimes travelling 1,000-1,500 miles a week, and after seven years in my role it became apparent to human resources that I was ‘tiring’ and had lost the enthusiasm for the job, and the organisation asked me to consider relocating to London with my then wife and family, which we did indeed consider, but eventually rejected, so a year later I left the job and headed home to a new role in the Cotswolds.

During the latter two years of my job in London, yes, I did change, although I was not directly aware of it – I was more tired (I fell asleep on the train twice and missed my station), I was sometimes aggressive in debates in meetings, and occasionally ‘throwing wobblers’ over a trivial matters. Whilst driving I frequently needed to stop off somewhere for half an hour or more before being able to continue the journey (this alone is not unusual, many company representatives can be seen ‘napping’ in lay-by’s or in service stations). So, on its own not a something which can be used as a diagnosis.

In my home life I apparently became ‘not a nice person’ to quote my ex wife, picking fights with family, occasionally going ‘off the handle’ over something trivial.

I can recall one evening when visiting in hospital, as I entered casualty I felt ‘weird’ and collapsed into an empty wheelchair, promptly to be ejected from the chair bodily by a passing porter and being kicked out of casualty for being ‘drunk’!

Various collapses happened, in town, in Tesco’s, at home and once in my Clinic and at work elsewhere which was the turning point in discovering the Insulinoma. But, before moving on to the discovery of Insulinoma I was referred to the Diabetic Clinic, because Insulinoma collapses are like hypo-diabetic collapses, sudden and unexpected! I was given a ‘GlucaGen HypoKit’, a 1mg ready filled syringe for injection if needed, strangely though it was never used … I also started taking regular blood samples, the average reading being 4.5 - 6.0, my bloods very often much lower, in fact the lowest I ever recorded was 1.4

Over the coming months various other collapses occurred, including the one in August 2006 whilst at work which was to be the start of the path of discovery to my Insulinoma. On being loaded into the ambulance the crew took ob’s as usual, and declaring I seemed fit and fine, so therefore they would take me to casualty as a precaution. As they got to the airport entrance they turned left, and not right. Mmm’ I thought, at the next traffic lights they turned left again and then I realised I was not heading to my town, but one just 8 miles away … On asking why I was being taken there I was told they were a crew from that town!

On arrival at casualty I was eventually seen by the Casualty Consultant, who had spent some time pondering my case, and looking at my notes from various other incidents and also the diabetic clinic reports. He concluded there and then that I may be suffering from something much rarer. He told me he had been a diabetic all his life since a kid, so was very aware of diabetes, and that in fact it was one of his specialisms.

I was referred by the Casualty Consultant to a Professor and his team at Bristol Royal Infirmary, where I underwent an Endoscopic Examination in November 2006, confirming the Casualty Consultant’s possible diagnosis. I had an Insulinoma, but needed to be referred again to the leading UK endocrinology team at London’s Hammersmith Hospital.

Under the direction of a Professor and various Senior Consultants I spent the next 6 months (February 2007 – September 2007) undergoing various tests and investigations, including yet another two endoscopic examinations, two MRI scans, as well as PET, Gamma and CT scans of various types, at one point I think I actually glowed in the dark because of the volume of radioactive material being injected for imaging purposes. I also had to have two angiogram calcium stimulating tests, also called an intra-arterial calcium stimulation test, the second one because the first one failed.

By September 2007 I was ready for the operation, both personally and also because the medical team wanted to move quickly before the Insulinoma became worse, or even inoperable? On the day of the operation I walked to theatre, waking later after a 7.5 hour operation by four Specialists Consultants, including one flown especially from France. Surrounded by family as they thought I may not survive the night I was heavily sedated, I had tubes out of my stomach, up my nose, out of my neck, plus a catheter and usual Venflon butterflies inserted in my hands/arm for post op medication/antibiotics etc.

I was told I would be in hospital probably three to four weeks, but after a very rapid recovery I returned home just ten days later, and that would be that start of a new journey.

Some weeks later, having been to the post op clinic at Hammersmith Hospital and been given a good prognosis (I was healing really well, and the Insulinoma had been tested, was benign and non-cancerous) Out of the blue I became ill, collapsing as before, this time though in terrible, terrible pain, sweating profusely, abdominal cramps that lasted 45 mins to an hour, it was awful. I was rushed on several occasions to the local casualty department as the concern was I may be suffering from Pancreatitis from the Insulinoma resection.

After about three or four unexpected visits to casualty, I had an Ultrasound scan, which discovered I had gallstones, so for another year I had to endure further unexpected bouts of severe pain before the operation site could be re-opened. So once again, diet was in check, making sure I did not eat fatty foods, drink milk, have butter etc.

July 2009 saw my return yet again to London’s Hammersmith Hospital for a cholysectecomy (gall bladder removal) by the same Consultant that did the original Insulinoma operation in 2007. Having had my gall balder removed I found myself with bouts of unexpected hiccups after drinking or eating, luckily this disappeared as quickly as they appeared, just one complication sometimes of gall balder removal!

How did I get gall stones after the Insulinoma, simple – during the original operation in 2007 for Insulinoma they tried to perform the procedure by keyhole surgery, but due to the location of the Insulinoma they had to convert to open resection, which meant removal of the stomach and gall bladder to get access to the pancreas, hence disturbing the galls stones …

Keen to get back to work I think possibly I returned to early, and ended up a few months later with a post-op hernia, my ‘Alien’ as I nick-named the sticking out lump, so yet again in 2010 I revisited my now favourite Hammy hospital for a post-op hernia repair. Again, by full open surgery I had the hernia site repaired with insertion of gauze to bind and hold the 8” incision made originally in 2006 together.

Summer 2011 has seen me finally discharged from Hammersmith Hospital after 5 years, 100% fit and well, with a caveat that if ever I feel unwell, or unsure I have a ‘hotline’ to the Endocrinology Team at London’s Hammersmith Hospital for life.

I still occasionally check bloods, curiosity I suppose, but unlike removal of a gall bladder, or appendix whatever, we cannot survive without a pancreas, it produces numerous other chemicals apart from Insulin which all interact with the body organs to give us life. I will always be grateful to the Casualty Consultant at Gloucester Royal Hospital who started the journey of discovery of my Insulinoma, without his ‘intuition’, his forethought I may now be floating on clouds.

I must also record my utter, utter faith in Hammersmith Hospital, London, it may look old and decrepit by today’s standards, but the level of patient care by the Consultants, Doctors, Nurses and others is first class and second to none, something that you need when you are a very, very rare case. In 2006, the year before my operation Hammersmith Hospital had just 14 cases from the UK referred to them, scary, but all survived …

Interestingly, the comment from the Professor in charge of Endocrinology at Hammersmith was that they are usually slow-growing tumors and they rarely spread. The size of my Insulinoma indicated that it had probably been growing for about 15 years pre op, coupled with the 5 years post op complications mean I have lived with Insulinoma and it’s associated effects for nigh on 20 years, and survived to be 100% fit and well today J

Elliot wright