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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
The grey region shows when I had a cold. You can see that whilst my blood sugar was generally high when I went to bed, it always seemed to be back to normal in the morning. This must be the honeymoon phase...

Diabetes and being ill don’t mix

Gratuitous shot of Mont Blanc. What an amazing view to have whilst marching 850m up a hill.

Gratuitous shot of Mont Blanc. What an amazing view to have whilst marching 850m up a hill.

I’ve just come out of a two week long cold. Despite evidence to the contrary (I got diabetes six months ago), I think of myself as someone who never gets ill. So getting a cold and feeling low on energy and not wanting to run was a real blow. Not least because my fund raising page reminds me that I only have 54 days left to the Marathon. Given that I want to run it in a very challenging time, two weeks of almost no quality training is a real blow. I’m still waiting for comments on whether I should run the marathon in a Onesie by the way. So far two people have commented, and that’s not quite enough to encourage me to do it!

Data Skiing
Factors affecting wakeup glucose

Does doing A LOT of running help blood sugar control?

This is where it all started - running in Chamonix in September made me want to do an ultra marathon in Chamonix. I found out yesterday that I have a place in the CCC - a 100km race from Courmayeur in Italy to Chamonix. It includes 7500m of vertical height difference.

This is where it all started – running in Chamonix in September made me want to do an ultra marathon in Chamonix. I found out yesterday that I have a place in the CCC – a 100km race from Courmayeur in Italy to Chamonix. It includes 7500m of vertical height difference.

Waking glucose – it was perfect for a few weeks round the start of December

I’m still in the honeymoon phase. That means my body produces a small amount of its own insulin and is therefore capable of controlling my blood sugar to some extent. In theory, if I was sensitive enough to this insulin, could my body control its sugar levels like a healthy person? Who knows!

For a few weeks before Christmas, I was consistently waking up with blood glucose readings of between 5 and 6 mmol/litre. That is basically PERFECT. It’s what a healthy person would wake up with. I started noticing that, and I also noticed that it was often 5.7 regardless of what level it was when I went to bed.

Over the past month it’s been between 6 and 7 when I wake up. That’s still good, but not PERFECT. I’ve noticed the change in trend and want to know why.

(Click on charts to enlarge.)

Wake up glucose

The blue line in the chart above shows my average waking up glucose. You can see a golden period before Christmas, where average waking up glucose was about five despite average glucose when I went to bed (red line) being higher. For the rest of the time, glucose on waking is pretty well correlated to glucose when I went to sleep. This suggests that my long acting insulin (Lantus – I take it before bed and it acts like “background” insulin, staying in my system for 24 hours or more) dose is about right.

What explains the really good waking glucose levels, and what explains them not being quite as good now? Please forgive the very busy chart below – it shows average waking and bed time glucose, how many minutes of running I did a day on average and average grams of carbs I eat before bed.

Factors affecting wakeup glucose

It’s not lantus

My Lantus dose has been steadily dropping as I seem to become more sensitive to insulin over time. (You can see I took it down to just four units while I was skiing, but it’s back up to 5 now.) There’s no obvious correlation between Lantus dose and waking blood sugar.

It’s not what food I eat at bedtime

If my blood sugar is a bit low when I go to bed, I normally eat something so that I don’t get a hypo. Am I eating more before bed now than I was? You can see from the chart that the opposite is actually true – I was eating slightly more before bed at the same time as my waking blood sugar was best controlled.

Could it be the running?

The other line on the chart is the number of minutes I’ve run a day, on average. In the lead up to my ultra, I was doing a lot of running (between 50 and 70 miles a week, or over 40 minutes a day on average). I wonder if doing all this running makes my body sensitive enough to insulin to enable my own insulin production to control my blood glucose to the optimal level? I’m going to ask my doctor.

The chart below shows my waking blood glucose, with periods where I’ve done over 35 minutes a day of running on average. You can see that there’s a rough correlation between waking with blood sugar of between 5 and 6 and me doing lots of running.

Running vs waking BG

I’m ramping up my running training again ahead of the London Marathon. I managed ten miles yesterday, 14 today and hopefully will do eight tomorrow. I’ll continue to monitor my waking glucose (of course!) and will be interested to see whether it starts coming in between 5 and 6 again.

I feel great to be running a lot again, and if it helps control my blood sugar better then that’s a nice bonus!

Data
Not much snow, but a great sky and amazing views.

Skiing with type 1 diabetes

I’m currently in Chamonix for my first skiing Christmas. I was ridiculously keen to go skiing again. But also aware that it was my first time skiing with type one. One of the main reasons I started all my running was so that I could understand my blood sugar control better to prepare me for skiing. I’d like to do things like this again safely with type 1, so I’m really motivated to control the condition.

Data Skiing

Training for the ultra – preparation

The chart shows how my blood sugar was affected by exercise and the carbs I ate during the run. The green line represents the time I was running for.

The chart shows how my blood sugar was affected by exercise and the carbs I ate during the run. The green line represents the time I was running for.

I’ve said before that by character, I’m pretty happy-go-lucky. But for anyone doing an ultra, I’m told that preparation is key. This is doubly true for someone with diabetes.

To that end I’m making headway with a few things on the preparation list. Firstly, I don’t want to get injured with all this running I’m doing, so I made an appointment to see a physio today to get myself checked out and get advice on injury prevention. The session started out well (“you’ve got strong quads”) but quickly turned to character assassination (“you don’t use your calves or bum muscles and you have no flexibility”) and ended in daylight robbery (“I can solve all your problems in just five expensive one-to-one sessions”). But seriously, he gave me really good advice, and after coming to terms with the heavy investment I’m going to have to make in both time (daily exercises – I’m starting off with kneeling practice – it’s harder than it sounds!) and money, I’m hoping that it will reduce my chances of injury.

The next thing is a plan for nutrition when running. This is the really complicated bit for me. And it’s why I’m so looking forward to all my long runs: I can collect more data!

On Saturday, I went down to the South Downs to do a 20 mile run. I decided getting the train out of london was a good idea, because at least the Downs have some hills which is good practice. I ran to my aunt and uncle’s house, and was greeted by another aunt, two cousins and a massive spaghetti bolognaise, which was a really nice surprise.

The run went really well (except having to stop ALL THE TIME to look at the map and figure out where I was going – oh, and to do those pesky blood tests). But my 20 miles took 3.5 hours, and apparently – according to Strava – I was actually moving for 2.5 hours. If that’s true that’s pretty quick. I didn’t take any short acting insulin (I want to avoid doing that whilst running because it’s too complicated and risky) and ate on average 30 grams of carbs per hour. This is good information about how much my body can process whilst exercising.

There are two problems though. Firstly, according to running websites, I need to eat more like 70g or carbs per hour whilst running an ultra. Secondly, my blood sugar went down to around 4 (or just under) a couple of times during the run. I was totally fine, and didn’t suffer symptoms of a hypo, but I probably need to give myself a bit more of a safety buffer if I don’t want to risk having problems at some point in the future. So next time I’m going to try to eat slightly more per hour – my theory is that if I eat more, my body might start producing it’s own insulin (I’m in the honey moon phase, so still produce some insulin) which will allow me to digest the extra carbs and eating more will give me a higher safety margin from hypos.

The other thing I’m finding with my training, is that I’m absolutely loving all this running! I enjoy the feeling of running along, and it’s great to be able to cover long distances in amazing scenery. I suppose this is part of the “gift of diabetes” – I’ve always enjoyed running, but I wouldn’t have attempted to do an ultra marathon this year if I hadn’t been diagnosed with type 1.

Data Running

Will information liberate me?

“Knowledge is power. Information is liberating.” Kofi Annan.

Not a bad place for a hypo! The photo doesn't do it justice, but we came round the corner of the hill, the clouds parted and we had a spectacular view of the Argentiere Glacier. By testing regularly during exercise, I hope to gain a better understanding of how to manage my blood sugar and minimise risk.

Not a bad place for a hypo! The photo doesn’t do it justice, but we came round the corner of the hill, the clouds parted and we had a spectacular view of the Argentiere Glacier. By testing regularly during exercise, I hope to gain a better understanding of how to manage my blood sugar and minimise risk.

When I was diagnosed, one of my first questions to Dr Powrie was “can I still climb mountains and run long distances?” He told me that it would be complicated, and that I should maybe reign in my ambitions.*

I’m not going to reign in my ambitions.

Having diabetes makes doing prolonged physical activity a more risky because of the risk of experiencing a hypo (low blood sugar). It is particularly important to bear this in mind when half way up a mountain, because it is hard to get a paramedic up a cliff, and it can endanger the diabetic and his companions.

Fortunately, mountaineering is already a risky business involving lots of kit. When climbing a mountain, or descending a snowy slope on skis, one has to constantly assess risk of falling, of weather, of avalanches etc. So I already have transferrable skills I can use to manage diabetes – it’s just an additional risk factor to manage, and it requires another load of kit.

The desire to keep on doing all this stuff has given me the motivation to learn as much as I can about the condition, and part of that is to collect a load of data. I’m suffering from a bit of “computer programmers block” at the moment and can’t quite decide how best to organise the mountain of data I’m creating every day. The crux of the problem is as follows: a normal person has to eat the right food to fuel their body whilst spending a day running or climbing. I need to do that, but also take the right mix of long and short acting insulin, and the right amount of carbs to stop me from experiencing hypos.

I’ve already found, for instance that if I’m running fast (for me, I’m defining a “fast run” as any distance up to half marathon) my blood sugar generally goes up for the first 45 minutes of exercise. If I’m doing less intense exercise, my blood sugar will go down. If I’ve taken short acting insulin before exercising (for instance if I’ve gone for a walk after lunch) my blood sugar will drop fairly quickly. It’s all very complicated and whilst my intuition is improving, I think I need to analyse the data more formally as well to give me the best chance of optimal blood sugar control, and decrease the probability of bad hypos.

I’ve created some charts to help me. Here’s an example of two runs I did – one half marathon (fast) and one run over two and a half hours which involved a climb of 1200m (slow).

The chart shows how my blood sugar changed depending on exercise and carb intake. I was running during the period between the green boxes. The blue diamonds show my blood sugar at different times, and the red boxes show how many grams of carbohydrate I ate at different times. Running fast (I have defined my half marathon pace as "fast") seems to mean that my liver releases glycogen into my blood stream at a quicker rate than I can absorb the glucose for the first 45 minutes of a run. After an hour I started eating jelly babies to prevent my blood sugar from falling too much.

The chart shows how my blood sugar changed depending on exercise and carb intake. I was running during the period between the green boxes. The blue diamonds show my blood sugar at different times, and the red boxes show how many grams of carbohydrate I ate at different times. Running fast (I have defined my half marathon pace as “fast”) seems to mean that my liver releases glycogen into my blood stream at a quicker rate than I can absorb the glucose for the first 45 minutes of a run. After an hour I started eating jelly babies to prevent my blood sugar from falling too much.

This is the same kind of chart, but it was a very different run. I ran for almost two and a half hours, and climbed 1200m. It's impossible for me to run fast doing that, and from the limited data I have (I didn't test after half an hour which would have showed the initial response from my liver) I would say that at this slower pace my liver does not release so much glycogen into my system.

This is the same kind of chart, but it was a very different run. I ran for almost two and a half hours, and climbed 1200m. It’s impossible for me to run fast doing that, and from the limited data I have (I didn’t test after half an hour which would have showed the initial response from my liver) I would say that at this slower pace my liver does not release so much glycogen into my system.

The data collection will continue, and I’m really looking forward to doing more long runs to find out about my insulin and carbohydrate requirements.

*I don’t want to make Dr Powrie sound like a killjoy. It was good of him to manage my expectations. I’m very lucky to have found such a good doctor and I have found him very supportive over the past two months.

Data

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?