On the morning of Sunday 12th February 2023, I woke up with a splitting headache, vomited and when I looked in the mirror both of my eyes were full of blood. On the Monday, after much badgering from my wife and mother, I called the doctor. My GP wanted to check for a mini-stroke and so I went to A&E at my very small local hospital. The A&E doctor did a CT and asked why my legs and hands were so swollen, I explained that’s just how I am and that I sleep with flight socks on to help but the swelling always comes back the next day. About 30 minutes later he said they had ‘found a Mass’.
I remember being terrified, they wouldn’t discharge me until the nearest major hospital said it was ok to do so and they were talking about blue-lighting me over to there. As far as I knew in that moment, I was dying.
My wife and I had known for years that there was something not quite right; I had been swelling for a long time. On holiday in 2011 we noticed that one side of my chest was larger than the other. When we got home I went straight to the doctors who ran some bloods and found I had low testosterone and raised prolactin. I was referred to the local hospital where the specialist was completely uninterested and sent me away to lose weight.
For years after that we just got on with it until my symptoms really ramped up during the first Covid lockdown. I have a very sedentary, office-based job. I think during a particularly busy time my phone logged a total of 168 steps in 1 day. When I started to gain weight and my ankles and feet were swelling we simply put it down to that. I tried to move more, my wife would push me out of the front door for a walk, but I was still swelling, I put on about 35kgs of weight in a few months. It got to a point where my legs would hurt because the skin was so tight. So, again, I went off to the GP and explained the situation and again, they told me to lose weight.
Once the CT was done, life changed. It was decided I had a Pituitary macroadenoma and over the next few months I had what felt like every test the NHS knew how to do: Nuclear scans, MRI’s, CT’s, blood tests, OGTT’s. The list goes on, but eventually it was decided the tumour had given me Acromegaly. The normal range of IGF-1 for my age is 14.9 -32.4, mine at that time was 131.2.
Acromegaly is awful and because it’s rare it doesn’t get talked about that often. As well as the swelling it gives you horrendous joint pain, you sweat uncontrollably even when it’s cold, it can affect your organs, my lower left jaw moved to what felt like a 45-degree angle and I couldn’t close my mouth properly. I was referred to QMC in Nottingham and was prescribed Octreotide in a very small dose. I felt excellent for the first week, it was life changing, but then my body felt like the batteries had been taken out. After harassing the endocrine nurse, it was agreed that they would increase the dosage and begin monthly Lanreotide LAR. Before I had the nuclear scan, I had to come off the Octreotide for 3 days and I could barely walk.
After some issues with my treatment in Nottingham I asked to be transferred to Addenbrookes, which is where I ended up having my operation. The Endocrine and Neuro team at Addenbrookes are really very good, I felt safe despite the fact that Acromegaly makes surgery very hard, it had given me sleep apnoea as well which the anaesthesiologist wasn’t happy about and my weight was a real problem. But the surgery was a success, I had a CSF leak which caused me to be very ill, but otherwise it went well.
It turned out my tumour was a triple hormone secreting adenoma; Prolactin, TSH and Growth hormone. It was pushing on my pituitary and almost completely preventing testosterone production. My endocrinologist called whilst I was writing this and she tells me I’m now confirmed to be in remission from Acromegaly, my IGF-1 is now 29. The acromegaly will never go completely, but I’m in the best position I have been in for a long time.
My wife was my hero through the whole episode, she was a rock and I have to say the biggest thank you to her, she kept me alive just as much as the hospital did.