Hello! My name is Calum. I am a 23-year-old trained actor currently working at a college in Oxfordshire. I was diagnosed with Arginine Vasopressin Deficiency in August 2022.
My pituitary journey began while I was away on a family holiday in Edinburgh last August. My family and I were staying with some friends for a 10 day get away. The holiday had been jampacked – exploring shows at the Edinburgh Fringe, visiting Holy Island, learning all about Old Ginger the dog, taking in the breath-taking views of the Devil’s Beef Tub and so much more!
It wasn’t until towards the end of the holiday that I started to experience some strange symptoms. I can’t really pinpoint when it all began, but I remember being extremely thirsty one day, but not being able to quench my thirst. It wasn’t until that night when we really noticed that something wasn’t quite right. As we were staying with friends, I was sleeping on a blow-up bed on the floor of their spare bedroom, where my Mum and Dad were also staying. We all headed to bed around 10pm and I was sure to take a bottle of water with me. I was fast to sleep, I was so exhausted from all the exploring we had done.
I then woke up at 11pm bursting for the toilet. I quickly scuttled off the blow-up bed, trying not to wake my parents and ran to the bathroom. I then headed back to bed where I would drink at least half a bottle of water before falling back to sleep.
An hour later, I woke again, and the same procedure followed, this time filling up my bottle of water before heading back to bed. The exact same series of events would then happen near enough every hour until the morning.
The next morning, I was absolutely exhausted, and it seemed my parents were too. Despite my best efforts, the sound of me scrambling from the blow-up bed had also woken them every hour.
We then sat having breakfast discussing my symptoms and doing the inevitable Google search to find out what was wrong with me. I could see the anxiety grow on my Mums face as the conversation went on, so I tried to pass it off as “the Scottish tap water isn’t as hydrating as the tap water back home” and that “the humidity of the stormy weather was drying me out”. But really, I had no clue what was happening, and I was becoming increasingly worried as it reached 12pm and I had already drunk 10 litres of water.
With a family history of diabetes my Mum was convinced that’s what it was. Thankfully, the friends we were staying with had a blood glucose reader which showed that my blood sugar levels were completely normal.
Still not sure what was going on and not wanting to spend the last few days of the holiday in a hospital, I called my GP and managed to book an appointment for the day after we returned home. We didn’t do much the next few days as everyone seemed to be extremely worried about me and I couldn’t go too far without a toilet or a water supply. Although I tried not to worry everyone, I could feel my symptoms intensifying.
Upon my return home, I went to visit my GP who also seemed concerned, but said he had an idea of what was going on and was going to put in an urgent referral to the Endocrinology department at the Churchill Hospital in Oxford. By this point I had got myself a 4-litre bottle that I would carry around with me everywhere. I was drinking way more than I could keep track of but was also trying not to drink too much as I knew of the dangers of water intoxication.
Luckily, a few days later I had a phone call from the hospital asking me to come in the following day. I nervously headed up to the hospital with my water bottle, the size of a newborn, and my parents. At this appointment I met with a consultant, an endocrine doctor and an endocrine nurse, all of whom have been a huge part of my journey so far and who I regularly meet with at my appointments.
Each of them took the time to chat with me and explain what was happening to my body. The consultant explained, that from my symptoms it was clear that I had a condition called Diabetes Insipidus (now Arginine Vasopressin Deficiency) and wanted me to start taking medication called Desmopressin to control my symptoms. They also gave me an information leaflet from the Pituitary Foundation which felt like it had been personally written for me and answered all of my questions.
While this appointment could have easily been very scary and overwhelming, the whole time the staff managed to keep me informed and calm. Although we had just met, I truly felt like each of them cared for me, and my wellbeing was their main priority. I was given a contact card and I was told that me or my family could call anytime if we had any questions or concerns, which was massively reassuring. They then explained that they wanted to do an MRI scan to give them a better idea of what was causing my condition, and they managed to get me a scan for later that evening.
In the following weeks I had daily contact and several hospital appointments with my team to monitor how I was doing and to find the correct dosage of Desmopressin for me. As the weeks followed, I was now feeling a lot better, and my symptoms were under control. However, we were still none the wiser on the cause.
My MRI scan showed that the stalk connecting the pituitary gland to the brain was slightly bulkier than normal but there were no separate tumours or growths which was positive but kind of unusual.
In the months that followed, along with the usual check-ups and blood tests, I underwent several scans and tests including, a lumbar puncture, another MRI and a PET scan. All of which have been used to rule things out, but still haven’t given us much information about the cause. And while we are still in the dark and looking for answers, my team at the Churchill have been nothing but amazing and have gone above and beyond at every step of the way – even making sure a member of my team was present at my lumbar puncture, though it took place at a different hospital. So, I just want to say thank you to every single member of staff at the Churchill who has helped support me and my family on this journey. You are all superheroes!
I cannot share my story without also saying a huge thanks to the Pituitary Foundation for the amazing work and support they provide. At the earlier stages of my diagnosis, I would spend hours a week reading the amazingly put together and informative booklets created by the foundation. I also want to thank them for being a platform for people like me to share our stories. It was reading the stories and experiences of others that brought me comfort when I most needed it.
I know that I am very fortunate to be surrounded by very supportive family, friends and professionals and understand that not everyone has had as of a positive experience with their local endocrinology departments and staff as I have. But for anyone who has been affected by a pituitary condition please know that you are not alone, and support is out there.