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

Firsts

My first prescription! Insulin pens for injecting, spare needles, the expensive testing strips and a "sharps" disposal box

My first prescription! Insulin pens for injecting, spare needles, the expensive testing strips and a “sharps” disposal box

Having had diabetes for ten days, I am experiencing so many things for the first time in my life. Here are some “firsts” I experienced today:

First run since diagnosis. I was a bit worried about running home from work. I will talk about hypos in more detail later (I haven’t had one yet), but I was interested to see whether running for half an hour would decrease my blood sugar to levels low enough to have a hypo. I ran at a fairly slow pace and am happy to report good news! Even at a relaxed pace I was faster than when I had been really pushing myself prior to diagnosis. I must have had mild ketoacidosis then so its good that I’ve recovered from that. Secondly, my blood sugar was higher when I finished my run than when I started. Interesting! I wonder if my liver was releasing glucose into my blood? (I think it does this at a higher rate during anaerobic exercise. At the pace I was running though, I was definitely exercising aerobically. Anyway, it’s more data, and I’ll ask my doctor about it.)

Getting an NHS prescription. Since being diagnosed, I have been testing myself frequently. Every time I do this, I need to put a drop of blood on a little disposable strip that I put in a machine. These strips cost a fortune and buying them without a prescription would have bankrupted me within the year! Thankfully, you fine tax payers are helping out now and I am extremely grateful for the pile of “free” drugs I picked up today.

Having an espresso. I sat down, reached for the white sugar, and thought “ah, I won’t be having that in my espresso ever again”. And put it back in the pot.

Writing a blog! Today is my first day posting a blog. Because the whole diabetes experience is so intense for me at the moment, I am writing more than even the most patient reader will be interested in reading! So please forgive the information overload. At least I find it interesting myself!

Diagnosis

Never ending data

I’m discovering that being a diabetic is a mammoth exercise in data collection.

This evening I am going to eat dinner. Sounds easy? Well it’s not! In order to eat dinner without sending my blood sugar levels off the charts, I need to take enough insulin to allow my body to absorb the carbohydrate I’m about to put into it.

So this evening (with the help of the carbs and cals app on my phone), I have discovered that the amount of carbohydrate in the following foods is: 70g per 100g of noodles; 5g per 100g of carrot; 7.5g per nectarine; 1g per avocado. So I work out that my dinner will have 100g of carbohydrate. (I am now committed, and can’t just help myself to another slice of bread or two after taking my insulin.)

I then have to work out how much insulin to inject. This, I am discovering, is complicated. It depends on what my current blood sugar reading is, what I would like my reading to be by my next meal, how many carbs I’m eating and what exercise I’ve done or am likely to do. Dr Powrie has told me to take 0.75 units of insulin for every 10g of carbs I eat. But I think I only need to take 0.6 units, so that’s what I’m doing.

How do I know that? I’ve been recording carb consumption, insulin consumption, exercise and blood sugar levels (luckily I have an app for that too). And I’m making an educated guess at how much insulin I need to take based on those variables.

I am measuring my blood sugar level obsessively. I want to know what it is when I wake up, before and after exercise, before meals, two hours after meals, and when I go to bed. And maybe even in between. I find myself constantly looking forward to my next blood sugar test. What will the reading be? Can I guess? I also really look forward to my trips to the hospital to see Dr Powrie – they are opportunities to learn more about the condition and more about how it is affecting my body.

My new app can send data files to excel, so I’m trying to manipulate them to learn more about how my blood sugar levels change. I have a hair-brained scheme that after I have collected enough data, I can perform a statistical method called “multivariate regression analysis” which will allow me to predict my required carbohydrate consumption to maintain safe blood sugar levels whilst running or climbing.

By coincidence, this weekend in the Times I read about a bunch of geeks called “self quantifiers” who measure all kinds of things about themselves like sleep patterns, steps taken, heart rate, calorie consumption and a whole load of other things. They use a whole host of gadgets which usually speak to their smart phone, and then they use, or often create, apps to analyse all the data. This all started in San Francisco (of course) but there is a London group who meet in Google’s office near Old Street. Maybe I can learn something from them that will help me manage my diabetes. I’ve joined and plan to attend their (our!) next meeting.

I’m sure I will be blogging more about how exercise affects blood sugar therefore carbohydrate intake and insulin doses as I discover more about it.

Data Diagnosis

The gift of diabetes

I’m sure that being diagnosed with type 1 diabetes is easier if one is a bit older. Firstly there are the physical benefits. As Dr Powrie reminded me, I’m probably closer to death than a child so have less time to develop the health complications linked to diabetes. Also there is some evidence that going through adolescence with diabetes increases the probability of complications. So I’m lucky to get it now. Not to mention that I’ve had 32 years of merrily running around without a thought as to what my pancreas even is.

The other thing about growing older is that there has been more time for many of my friends to undergo hard times of their own, whether it be bereavement, unemployment, health problems, stress or depression. By now I’ve realised that life isn’t always easy and that one would be incredibly lucky to go through it without something shit happening. I’ve been incredibly lucky in all aspects of my life until now, and now some shit has happened to me. That’s life.

I also believe – strongly – that happiness and contentment spring from a sense of achievement. That doesn’t mean winning an Olympic gold or becoming prime minister but it does mean making the most of one’s talent and circumstances and continually learning, developing and growing. So I am what I am: diabetes is going to make life more complicated but it won’t affect my happiness, because that is derived from satisfaction at achieving whatever I set my mind to given the cards I’ve been dealt.

Other than free medicine prescriptions for everything, there are other benefits from type 1. I feel closer to Emily than ever, and she has been amazing. She’s totally taken it in her stride and has been cheerful and supportive and not even a tiny bit sad. It’s incredible that she’s been so cool about the whole thing. My family and friends too.

Some people with type 1 refer to it as being given a “gift”. I can only assume this is ironic, but people do say it has inspired them to do things they would never have done without it. I’m finding that I can understand that desire. Over the past few days I have had a whole bunch of crazy ambitions. I want to write a blog. I want to run a marathon and then an ultra marathon and raise money for the JDRF (a type 1 diabetes charity). I want to hold a charity fund raising event with Steve Redgrave as the after dinner speaker. I want to be a motivational speaker! I want to design an app to predict calorie consumption by the muscles during exercise! This is all ridiculous of course. I can’t even get my blood glucose on a sustainable path yet so should probably concentrate on that first.

I have applied for a London marathon spot for JDRF though. When answering the question of why I want to run for JDRF I wrote “because I have type 1 diabetes!” I didn’t tell them I’ve only had it for a week because they probably wouldn’t give me any chance of finishing. I also want to run a personal best (I don’t know how much diabetes will slow me down, but luckily my personal best is pretty slow so at least that will help me!)

Diagnosis

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

What would I swap for diabetes?

Type 1 diabetes is an autoimmune condition where the body’s antibodies attack the beta cells in the pancreas. These cells produce insulin which muscles need in order to convert glucose into energy. All carbohydrate we eat is turned into glucose which is transported in blood to cells in our muscles. Without enough insulin, cells cannot use glucose. This both increases glucose (or sugar) in the bloodstream and causes the body to convert its own fat and even muscle into energy. This explained why I had lost so much weight and even seen the muscles in my arms and legs apart to waste away. One of the other side effects is that the liver produces high levels of toxic ketones. Too many of these cause “ketoacidosis”, with causes collapse and hospitalisation. Luckily my diabetes was diagnosed before this happened. Unfortunately, I did suffer from one of the other side effects of high blood sugar: thrush. I think that is natures way of kicking a man while he’s down! (At airport security, Emily was more concerned about the thrush cream than the needles.)

If uncontrolled for a period of years, high blood sugar can cause other complications such as increased risk of heart disease and stroke, blindness and ulcers in feet. Luckily this can be managed. The average diabetic (I am told) may spend as much as two hours a day calculating how many carbs they are about to eat, what exercise and other environmental factors may affect blood glucose levels and therefore much insulin to inject themselves with. Understandably, this puts considerable strain on sufferers. Diabetes “burnout” is common and one in four diabetics will be diagnosed with clinical depression at some point in their life.

Another short-term risk posed by diabetes is experiencing a “hypo”. This is when blood sugar levels drop below a safe level. The symptoms include reduced physical and mental ability (someone experiencing a hypo may appear drunk) and in extreme cases, collapse and hospitalisation. Because sustained exercise causes a drop in blood sugar, getting the glucose in the right zone is complicated and risky during exercise and consequently many diabetics don’t bother with longer endurance challenges.

For anyone, and especially someone as active as me, the diabetes diagnosis is clearly a life-changing event. Will I ever be able to climb a mountain again?

Given the magnitude of the diagnosis, I have been unable too think of anything else over the past 8 days. One of the mental games I’ve played with myself is wondering what other conditions I would swap for my diabetes.

A broken arm? Definitely! A broken hip? Yes. Cancer that gets successfully treated? Ummm… yes, but the whole experience would be horrific, and it wouldn’t be allowed to come back. Crohn’s disease? Wouldn’t like to say. Blindness? Would rather have diabetes.

Then I think about other things in life I could trade for diabetes. On the day I got diagnosed a friend of mine was told her mum had weeks to live. I’d rather stick with the diabetes thanks. Separating from my wife? No: would rather have diabetes. Losing our new house and all the equity in it? Yes I’d rather that than diabetes

Diagnosis