Pill

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
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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

JDRF – “your stories”

I’ve mentioned JDRF a few times before in my blog. JDRF are a global charity that aim to find a cure for type 1 diabetes, and to support people living with the condition.

When I was diagnosed, I almost immediately applied to JDRF to run the marathon for them. (I’ll be asking the readers of this blog for sponsorship at some stage!) I wasn’t sure whether they’d have room for me, so sent them a link to my blog. They liked it, and asked me to write a short piece for their website, which has a “your stories” section about people living with diabetes. Click here if you’d like to read my story.

From a selfish point of view, I am actually more thankful for the support I’ve received from the JDRF than about their funding for research. Although both these things have already made a difference to me.

When I was first diagnosed, Dr Powrie gave me a pack from JDRF which contained loads of information – particularly a book written by JDRF which contained all the information I needed to understand the condition. It was a great support and the JDRF, Diabetes UK and Runsweet (written for athletes with type 1) websites are an invaluable source of information for me.

Other people with diabetes, parents of diabetic children, tax payers who fund our treatment, and of course myself, would all love for there to be a cure. And JDRF sponsors many strands of research (their tag-line is “treat, prevent, cure”), from better treatment of diabetes to artificial pancreas implants. I’m currently participating in a phase one trial funded by JDRF which may help stop the destruction of beta cells. (If I’m very lucky my immune system will slow down its attack as a result of the trial, and in any case I see a research nurse and doctor every fortnight which helps my understanding and management of type 1 enormously.) This would be amazing for diabetics. If someone could wave a wand and stop my immune system from destroying my insulin producing beta cells, I would be incredibly happy. I would still have to manage my diabetes with insulin, but I’m finding that living in the “honey moon phase”, where my body still produces some insulin, really isn’t that bad.

To prove this, here’s another fan chart of my blood glucose. A normal person will have blood sugar of between 4 and 7. The chart below shows that almost 95% of my blood sugar readings (at meal times, waking up, and bed time) are between 4 and 8. That is pretty good, and I hope (but don’t know) that my doctors will give me a pat on the back and tell me I don’t need to worry unduly about complications.

My average blood sugar level is where the two darker blue bars meet. It's currently just under 6 which is pretty good! 50% of my readings are between the two darker bars. 95% of my readings are between the lighter blue bars. If only I could stay in the honey moon phase forever...

My average blood sugar level is where the two darker blue bars meet. It’s currently just under 6 which is pretty good! 50% of my readings are between the two darker bars. 95% of my readings are between the lighter blue bars. If only I could stay in the honey moon phase forever…

What is type 1?

Insul-independent

I am of course exaggerating with the title of this blog post. I have type-1 diabetes, therefore I am insulin dependent.

However, since being diagnosed seven weeks ago, I have become much less dependent on insulin than at first. In my opinion, this is down to two things. Firstly, when newly diagnosed, diabetics often experience the “honeymoon effect”. I don’t think this is fully understood, but it seems that before treatment starts, the remaining insulin producing beta cells are working flat-out and are totally knackered. (A bit like the shortly-to-be diagnosed diabetic!) When treatment starts, these cells recover a bit and can produce more insulin which helps newly diagnosed diabetics to control their blood sugar fairly easily.

Data What is type 1?

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?

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