Laura, from Worcestershire, UK, was diagnosed with two insulinomas in January & March 2010, and one further insulinoma July 2011.
My symptoms first started back in September 2008 (I was 25 at the time). It was whilst spending a day in London I noticed that I was feeling drunk. I knew I was only drinking lemonade but still asked my dad if he’d mixed in some gin, which of course he hadn’t! We went for a meal shortly after that & I soon felt a lot better.
My symptoms became more & more apparent & by May 2009 I was experiencing the following regularly; dizziness, lack of concentration, exhaustion, tingling mouth & lips (particularly after eating), severe memory loss, the need to eat regularly as I was constantly hungry which resulted in weight gain. It got to the point where I wasn’t waking up in the morning, my Husband would often attempt to &, despite my eyes being open, I gave no response. He realised that I needed something sweet to eat to bring me round gradually. I struggled with even basic day-to-day tasks as I felt so exhausted, exercise was becoming increasingly difficult as I often experienced blurred vision & would feel very unstable on my feet.
I was regularly visiting my doctor to provide updates, in particular that I was having strange attacks whereby I would experience erratic involuntary limb movements (both arms & legs) which was appear to look like a seizure. This was starting to happen in public places, on one particular occasion when I happened to be in a coffee shop during peak time but thankfully my husband was with me & I didn’t injure myself. In May 2009, given the similarity of the symptoms, my doctor advised me there was a possibility that I could have epilepsy & I was referred to a Neurologist as soon as possible to look into this further.
On 2nd June 2009 I was following my boss home after work as I was going to see his new baby boy. En route I remember following him & then all of a sudden my foot went down on the brake & I was trying to control my driving but it was almost like I couldn’t control my feet. My boss in front noticed & therefore slowed down, I managed to catch up with him & he turned right. From here on in the rest is a complete blur, I don’t have any recollection. The next thing I knew was parked in a grass verge with my boss stood next to the car looking very worried. I had my head down on the passenger seat & I burst into tears. I knew I’d had a funny turn but had no idea about the scale of what had happened.
We then left my car on the grass verge & my boss drove me home. My husband opened the front door & I was very upset as I was unsure what had happened. Thankfully, just that day, I had told my boss about the possibility of having epilepsy so he was aware of what I was going through (to a certain extent). He told my husband in private that I had actually driven into the back of his car & he could see that I was unable to control my vehicle. I was in total shock when he told me; I felt like I was losing control but couldn’t understand why.
I saw the neurologist a few days later & I was sent for an MRI scan & an EEG. I returned to get the results of the tests & they didn’t show anything abnormal but apparently this can be quite normal for people with epilepsy as they often needed to catch a seizure during or shortly after it has taken place. Our Wedding was pending so it was decided that I’d start on some epilepsy medication & monitor how I coped, increasing it weekly until I reached the correct dose.
At this stage I voluntarily surrendered my driving licence. I didn’t notice many changes from the medication although I was becoming increasingly tired, but just put this down to the increased medication I was taking. During this meeting the neurologist did recommend that I also saw an endocrinologist just to rule anything out from their point of view, which was sparked following the confession of my constant hunger & the need to eat regularly.
One of the most frightening occasions was in August 2009 when my husband & I arrived at my mum’s house; I knew the code for the alarm so she told us to let ourselves in. It took me a while to even get the key in the door & I felt something was wrong. As soon as we got into the house the alarm was going off & I looked at the key pad to enter the alarm code & it was as if I had never seen it before, I had no idea what the number was. I just stood there in a daze whilst my husband tried to engage me in conversation. He called my mum to get the code & I went to sit down. I was feeling so tired so I went to lie down. In hindsight this was the worst thing I could have done as I needed to eat to bring my blood sugar back up. I went into a deep sleep & 2 hours later my mum & husband woke me up for tea. I was apparently very vague & had a blank expression. I then had 2 hypo’s which lasted about 20 minutes each. This was the first time my mum had seen it so it was obviously distressing.
When the 1st hypo lasted longer than usual they called an ambulance, as the ambulance staff arrived I had the 2nd hypo so they were able to witness. They said that this wasn’t characteristic of an epileptic attack & they checked my blood sugar level which was 1.9. I was given a sugary cup of tea & some bread coated in jam but as a precaution, given how low my blood sugar was combined with my dazed state of mind, I was taken into hospital & kept overnight for further investigations.
I visited my doctor again at the start of September 2009 after my time in hospital & it was during this appointment that the first discussion of Insulinomas was raised. My doctor mentioned that whilst she was at medical school she had learnt about Insulinomas & the symptoms. The doctor said that she would notify the neurologist about her thoughts & take it from there.
I then got married & we had a wonderful day & a wonderful honeymoon! Upon our return my symptoms got increasingly worse & I was now seeing an endocrinologist. I had a series of fasting blood tests & the lowest it went was 2.6. I was now adamant that I had an Insulinoma & so continued on my quest to get a diagnosis. The endocrinologist was very helpful & now that he knew that I didn’t have any addition stress I had a prolonged fast which lasted about 6 hours, by which time my blood sugar had dropped to 2.4 & after analysis it showed an increased c-peptide & insulin level, by this point an Insulinoma was looking increasingly likely. In early January 2010 I had a CT scan which confirmed a 2.6cm lesion on the tail of my pancreas which was confirmed as an Insulinoma. I was shocked but also relieved at the diagnosis & thankful that after the journey I had been on I had reached a point whereby it could be dealt with. I was put on diazoxide in the short term & I then had an endoscopic ultrasound to confirm the location.
During March 2010 I had open surgery to remove the Insulinoma (at this point the original sight of the Insulinoma was ruled out & an Insulinoma at the head/neck area of the pancreas was confirmed) & although this was successful the original sight of the Insulinoma on the tail of my pancreas was in fact another Insulinoma & so my symptoms remained. This was then successfully removed at the end of April 2010 as well as my spleen & although I had 2 lots of open surgery in close succession, I was relieved to see that my blood sugar levels were slowly returning to a normal level despite a few peaks in my sugar levels as my body readjusted. I had some complications following both lots of surgery which included infections; a collection of fluid where my spleen used to be & a build up of fluid on my left lung. All of which were treated following a few returns to hospital.
I continued to have regular checkups & made slow but steady progress with my recovery. During one of my visits to the endocrinologist the genetic condition MEN1; Multiple Endocrine Neoplasia Type 1 was discussed (please see www.amend.org.uk for full details of the condition) & it was suggested that I should be tested as I had multiple Insulinomas. Thankfully I had read an article on MEN1 so had some background knowledge. I agreed that this was worth investigating & an appointment was booked to see the genetics team. It began with genetic counselling which explained all about the condition & my family tree was reviewed to see if there had been any particular health issues that could be connected to MEN1. I had the genetic blood test & had to wait a number of weeks for the results. The results arrived through the post on the morning of New Year’s Eve 2010. It was confirmed that I had the genetic condition MEN1 & there was a booklet enclosed explaining the condition. To say I was shocked was an understatement & it really did take some time for the news to sink in. No longer was I dealing with 2 Insulinoma’s that had been removed, I now had a lifelong condition to consider. Since then, both my Dad & Uncle have been diagnosed (my brother was clear).
During 2011 I was found to have 1 further small Insulinoma on the pancreas which was picked up by a scheduled endoscopy (I also had another suspected one however it was too small to take a biopsy at the time). I was upset to hear of further growths however, the 1 Insulinoma was treated with a new treatment which involved injecting the Insulinoma with alcohol to try to break it down. This treatment is still in its research stage however for me it was a success. I had a course of 2 injections via an endoscopy. The side effects afterwards were uncomfortable however, the fact that I didn’t need open surgery again was a big relief & it meant recovery time was a matter of days.
I have a fantastic team who look after me at the Hospital & I know that if I ever have any problems I can get in touch with them without hesitation. I now have an annual check up when my bloods are checked along with Endoscopic Ultrasounds to view my Pancreas as this seems to be my troublesome area. My Consultant wants to ensure that I hold onto my pancreas for as long as possible by trying to deal with any new growths as quickly as possible. There is no guarantee that I will continue to get Insulinomas however, regular checks keep me positive.
At present I am awaiting an endoscopy in December 2012 as there are small growths located on my pancreas however, they have been classed as non-specific therefore my fingers are well & truly crossed!!
Life has its ups & downs living with MEN1, it’s important to try not to worry about what may happen & instead enjoy life to the full; dealing with things as & when they arise. It’s amazing the difference steady blood sugar levels have on you & I’m just thankful to my fantastic Husband, family & friends who continually support me along this journey, thank you to each & every one of you.