A snapshot of diabetes care in the UK

I watched the History of Everything last night. It was a brilliant film, and another reminder that there are plenty of things in life worse than having type 1 diabetes.

I watched the Theory of Everything last night. It was a brilliant film, and another reminder that there are plenty of things in life worse than having type 1 diabetes.

I had my annual eye scan last week. After missing my first appointment due to diarising it for the wrong day (cue pangs of guilt), I turned up at Homerton hospital on a damp Thursday morning to have my eyes photographed.

Retinopathy is a common problem for diabetics. High levels of sugar in the blood vessels damage the eyes over time, eventually leading to blindness. A 2002 study showed that almost all American adults with type 1 diabetes for 20 years and 60% of adults with type 2, had retinopathy. It is the leading cause of blindness in the under 65s. What horrific statistics!

Diabetes Management

Will I go blind? HbA1c can help measure the risk

THIS IS NOT TO SCALE! Illustrative chart to show how average blood sugar (HbA1c) is linked to the risk of developing complications.

THIS IS NOT TO SCALE! Illustrative chart to show how average blood sugar (HbA1c) is linked to the risk of developing complications.

Before I start, I’d like to remind you that I’m not a doctor and all my knowledge about diabetes comes from conversations with my doctor (which I may misremember) and Wikipedia. Oh, and personal experience!

When one is diagnosed with diabetes, it’s not long before the word “complications” is encountered. Diabetics are more likely to develop heart problems, eye problems (including blindness), kidney failure and ulcers in the feet. It is my understanding that consistently high blood sugar is a causal factor in all of these. So an important reason to measure blood sugar is that it allows a diabetic to assess how successful their blood sugar control is and whether they need to change anything.

An important test for this is the HbA1c test, first used in the Seventies. When the glucose content of blood is high (this can occur in a healthy person immediately after a glass of coke for example), glucose molecules attach to hemoglobin in the red blood cells. Red blood cells live for up to three months, so it is possible to find out how much glucose has stuck to the hemoglobin and therefore find a measure of average blood glucose levels over the past couple of months.

HbA1c can be expressed in different ways, but many people use a percentage. A healthy person will have an HbA1c of between 4% and 5.9%.

According to my doctor, the risks of developing complications rises exponentially as HbA1c rises. To understand what this means, just look at the graph on the top of this post. You can see that as HbA1c goes from 7 to 5.9, the risk of complications goes down by the amount in the lower shaded area on the left hand side. So the risk decreases but not by very much! If a diabetic has higher average blood sugar though, and their HbA1c goes from 11 to 10, then the risk of complications goes down by the higher shaded area on the left hand side of the graph.

What this means, is that if blood sugar is high, there are really big gains in terms of long-term health by controlling it better. If blood sugar is low (say HbA1c is 6.5%) then whilst risk does decrease by bringing blood sugar down, it doesn’t decrease by much. At these levels, other lifestyle factors such as smoking are much more important. (Another reason why diabetics have to eat a super healthy diet. Keeping cholesterol low, for example, is important in reducing the risk of heart disease.) So at low levels of HbA1c the costs of getting average blood sugar down further (increased risk of more hypos) probably outweigh the benefits. I will be advised by my medical team what balance to aim for, and other diabetics will be too – it depends on personal circumstances, sensitivity to hypos etc.

My doctor and I discussed all this in the context of heart problems, so I’m not 100% sure that the graph is the same for other complication such as eye problems.

I can’t remember what my HbA1c levels are. They are still too high. When I was diagnosed they were through the roof, and on my most recent visit last week they were much lower. (Dr Powrie was very complimentary saying how impressed he was with how much it had come down!) Anyway, I’m not going to worry about them yet. I’m sure (I hope) that a few months of high blood sugar around my diagnosis won’t make much difference to my risk of complications, and as I get things under control, my HbA1c should come down by itself.

Data What is type 1?

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