Diabetes diagnosis and how participating in clinical research can help

Guys hospital research unit hosted a group of MPs and Diabetes UK staff for a tour of their facilities today. Guys has a world class research facility and does more for diabetes research than I could do justice to here. The number of dedicated staff supported by sophisticated (and expensive) machines gave me renewed hope that we can beat type 1.

I was asked to speak about my experience of being diagnosed and of participating in a clinical trial. I’ve written about my diagnosis quite a bit in the early days of this blog,  but with the benefit of hindsight,  I thought I could summarise my experience with a few pictures.

Diagnosis

My advice to a newly diagnosed type 1 – a year into my pancreatically challenged life

Last week was my one-year anniversary of my diagnosis. People refer to it as the “diaversary” but I really don’t like the word!

I can remember all too well the shock of my diagnosis. I could not concentrate on anything else for the two or three weeks following, and I had huge uncertainty about whether I would be able to continue to do the things I loved doing. I was lucky to have fantastic support from my wife, family, friends and medical team. What words of advice would I give someone else who is newly diagnosed? I’ve been thinking about it since my anniversary and here is what I came up with. Bare in mind that I’ve had the condition for a mere twelve months. There are probably loads of wiser diabetics who have better advice than me!

Diagnosis

Tiger to run London Marathon – Guinness World Record Attempt

I have decided to run the London Marathon (in about a month’s time) dressed in a Tiger costume. It covers my whole body – feet, hands, head and face! It’s going to be hot.

I asked the Guinness Book of Records if there was a Onesie category (I wanted to run as a type-onesie) but there isn’t, so they suggested the animal.

The record is currently held by a cow in 2:51:18. It’s going to be really hard to go faster than this but the London Marathon is all about having fun and pushing personal limits so I’m really excited about trying. When I signed up for the marathon straight after diagnosis, I wasn’t even sure whether I’d be able to do it with diabetes. I’ve come a long way since then, and hopefully wearing a stupid costume will raise awareness that people with type 1 can do everything a “healthy” person can.

Running

Week one – information overload

I was lucky enough to spend my first weekend with type 1 in the French Alps with Emily. I had already read half of the diabetes book I’d been given by the time the plane’s tyres had hit the tarmac in Geneva. The first section is about receiving the diagnosis (twelve people a day are diagnosed with type 1 on Britain, half of whom are adults). There were plenty of quotes along the lines of “my world turned upside down”, “why me?” and “Whose fault is this?”. So how did I feel?

Firstly, relief that my weight loss was “only” diabetes and not anything worse. Then shock that I had “the bad type”. It hadn’t occurred to Emily or I that I might have type 1. My uncle had developed type 2 diabetes a few years before, and we assumed that I’d be following in his footsteps of modifying my diet for a few years.

On being told my first question to Dr Powrie was could I expect to ski tour (an activity that involves walking or climbing up mountains before skiing down them) at the level I was doing before? Could I run long distances? He told me it would be complicated and that I shouldn’t expect to be able to do these activities. The obvious response to that was denial: of course I’d figure it out.

Over that first weekend I had the overwhelming desire to share the news. I emailed all my family and closest friends (or at least the friends I climb and ski with). There’s no point in keeping this kind of condition secret anyway because injecting oneself before meal times is so public!

The second overwhelming desire was to learn as much as I could about the condition. This has preoccupied pretty much every waking thought since. The desire to continue to do the things I love in life is incredibly motivating. I need to be able to climb mountains this winter. That means I need to master my condition so that I can safely exert myself at altitude without endangering myself, or my companions, with a bad hypo. Insulin becomes ineffective if it freezes and the battery powering the blood glucose reader will stop working if it gets to cold. I need to develop fail-safe methods of ensuring my monitoring and medication actually work.

There is so much to find out. How do I register at a GP? I haven’t been to one since I was at school. I want to understand the physiology relevant to my condition. How exactly does carbohydrate affect glucose levels? Where can I buy insulin from? What athletes have type 1? Can I meet them to ask advice? How do I find out how many carbs are in my food? How do I track medication, carb intake and glucose levels? What do the diabetes charities do? Should I try to raise money for them? Shall I write a blog? How do I do that?

The questions are endless. I’m trying to tell myself to slow down and take one step at a time. First of all I just need to learn how to keep my blood sugar in a healthy range. I see Dr Powrie on Monday: the day we get back from France. He starts me off on pre-meal injections. My work colleagues are amazing: they take my regular injecting in their stride and are incredibly supportive. I spent most of my first full week as a diabetic visiting various hospitals and doctors and consequently delegate everything I can to my busy colleagues. I definitely owe them lunch. Dr Powrie also reminds me not to get my hopes up with the ski touring. He does it himself so he knows what’s involved.

I see him again on Wednesday and on Friday. By Friday he decides it’s time to get me varying my doses depending on how many carbohydrates are in my meal. It’s like a maths problem. First I work out how many grams of carbs there are in the food I’m about to eat. (Luckily there is an app for that.) Then I take 0.75 units of insulin for each 10 grams of carbs. Finally for every 3 units of blood glucose over my target (which is 10) I should take one more unit of insulin. Easy? I’m beginning to understand why type 1s – apparently “type 1” is a noun – spend so much time thinking about medication and eating

Diagnosis

Diagnosis

My new routine - calculating carbs, deciding dose and injecting!

My new routine – calculating carbs, deciding dose and injecting!

I was diagnosed with type 1 diabetes eight days ago. I can hardly believe it’s been such a short time: the sheer volume of information I’ve had to come to terms with has stretched time out.

According to the doctor, my body started killing off the insulin producing beta cells about two months ago. At that time I was blissfully unaware of the self-destruction going on in my body. I am newly married, and my wife and I were in the middle of moving into our first home. It was a hugely exciting time. I was doing a few running races, and starting to run long distances in the mountains. Feeling super fit, at the start of July I thought for the first time “I might just be able to run a mountain marathon”.

So whilst in that blissfully happy time of living in a new home surrounded by boxes and endless possibilities for the future, I started to notice a few changes. I was a bit slower on my run into work and my legs were taking days to recover. Over a couple of weeks I developed a raging thirst that was almost impossible to quench. I was also vaguely aware of losing a bit of weight.

Initially a huge appetite combined with moderate weight loss seems like a dream scenario! But I quickly became worried. It was les than two weeks ago that I was running to work feeling knackered, remembering the image of my ribs clearly visible in the mirror when brushing my teeth, and starting to let my imagination run wild. Did I have worms? Maybe. My wife, Emily, is a manager in a hospital working in cancer care. I knew from her that sudden weight loss is a flashing red light for cancer. Whilst plodding along, I tried to work out whether my life insurance would be enough to allow her to continue paying the mortgage. I also had the morbid but comforting thought that if I was going to die, at least I’d lived life to the full and I couldn’t regret not having done anything!

Whilst telling myself I was clearly mental, I decided to go straight to the gym at work and weigh myself. 67kg. I’d lost 5kg (almost a stone) in three weeks and was as light as I’d been since adolescence. Crap. I walked straight into the doctor’s office and made an appointment.

The rest, as they say, was history. Two days later Emily and I found ourselves sitting in London bridge hospital opposite Dr Powrie hearing that I almost certainly had type 1 diabetes. Yes that’s the bad type, he said, I’ll be injecting myself with multiple shots of insulin every day for the rest of my life.

My first reaction was relief. I had been diagnosed. It wasn’t cancer and I was going to live! I also had no idea what diabetes was other than being aware that there were lots of charities raising money for it and that it was a big problem because all of us eat too much these days.

Emily and I were planning to spend the weekend in the mountains in France. It was midday on Friday: four hours before we were due on a train to Gatwick. We could see Dr Powrie doing the sums. Would it be safe for me to go and could he get all the tests done in time? We did go, after I had been given a crash course in how to give myself a once daily injection of insulin to stabilise my dangerously high blood sugar levels, and after being given a big book about “type 1” and a kit to test my blood sugar. Oh, and a doctors note to explain why I was about to carry all these needles through security. A month ago I was winning a running relay race and now I was a fully certified diabetic!

Diagnosis