My second honeymoon

If you told me last October that I’d be having a second honeymoon within a year I wouldn’t have believed you. But here I am enjoying the “honeymoon period” in type 1 diabetes. The photo above is from my first honeymoon to Patagonia. I put it in the post cos it’s more interesting to look at than all the charts!

When I first got diabetes, I thought I’d be able to do loads of clever things with my data to get good at managing it. I’ve been collecting data enthusiastically, but making sense of the mountain of data I’ve produced is difficult. Plus I spent two weeks not recording anything at the start of November because I was sulking. Sulking because my smartphone app which I use to record all my data was bought by another company and they seriously dis-improved the user experience as a result. I was shocked at the emotions I experienced when something I use and depend upon every day was changed: I was more angry and upset about that than I was about being diagnosed with diabetes in the first place! So were many other users if the number of horrendous reviews on Google Play were anything to go by. Luckily they fixed the problems, but that explains the gap in my data below.

Data Diabetes Management What is type 1?

Learning

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I came across this yesterday. I thought it was pretty thought provoking. I’ve been pretty lucky so far with my experience of diabetes. My blood sugar has been amazingly well controlled and I haven’t had any bad hypos. I’m definitely doing some things right – like conscientiously counting carbs, taking frequent blood glucose readings and eating healthy food.

But I must remember that two months of being diabetic doesn’t make me an expert and that I mustn’t treat the prospect of a bad hypo lightly, or believe that I’m anywhere near mastering my condition. I’m sure I’ll also have to accept periods of high blood sugar whilst trying not to be hard on myself or worry about future complications.

Tomorrow I’m meeting a specialist nurse who is going to give me and teach me how to use a glucagon pen. (Glucagon is a hormone which stimulates the liver to release glucose into the blood.) I will then instruct my wife, friends and colleagues on how to use it: if I have a sufficiently bad hypo that I fall unconscious, the glucagon should be injected into me, which should bring me round. Hopefully it will never get used.

The article containing the picture above went on to say this:

“Think of it this way: There are two kinds of failure. The first comes from never trying out your ideas because you are afraid, or because you are waiting for the perfect time. This kind of failure you can never learn from, and such timidity will destroy you. The second kind comes from a bold and venturesome spirit. If you fail in this way, the hit that you take to your reputation is greatly outweighed by what you learn. Repeated failure will toughen your spirit and show you with absolute clarity how things must be done.”

It was talking about entrepreneurship, but I’ve taken some heart from it. I can’t claim to have never failed in the first way, but at least with diabetes I am pushing myself and my body to find out what’s possible, and I’ll have no regrets about not doing stuff.

What is type 1?

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?

Peptide Clinical Trial

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The new feature at home: I turned a bit of the kitchen into a blackboard, and am now adding carb contents per hundred grams of commonly cooked stuff. I also have weights of our pans so that I can subtract that off whatever I need to weight inside the pan. Never ending maths!

I have returned from holiday. Relaxing in Croatia was luckily just the thing I needed and gave me some space to come to terms with my new condition. We were lucky enough to have a cook, and she must have thought I was a real English eccentric: insisting on having my digital kitchen scales at every meal to calculate how many carbs I was eating. My family started off by waiting politely for me to test my blood, furrow my brow, calculate carb content and then administer medication before eating, but they quickly tired of that when they realised how much time I had to spend on all the faff!

Having returned home, I received the good news that I am eligible for the monopepT1De study. The name is a clever play on words: “T1D” is short for “Type One Diabetes” and the study is about using mono peptides to stop the body’s immune system from destroying the insulin producing beta cells in the pancreas. There is some information on the trial here. If you’re feeling really clever, you can read more here.

During the 1980s, it was found that by using auto-immune suppression, the destruction of beta cells could be slowed. However given that insulin therapy is relatively straight forward, the side effects of non-specific auto-immune suppression are considered undesirable. A treatment whereby the auto-immune response is changed in a more targeted way has been pioneered for certain clinical allergies. Dr Liu (who I will be seeing) and colleagues have developed a version to treat patients with type-one diabetes.

The trial will involve me going to the hospital every fortnight to receive an injection of the peptide “vaccination”. Patients are all recently diagnosed type one diabetics, and are split into three groups. One group will receive the peptide injection every fortnight, one group will receive a placebo, and the last group will receive alternating injections of peptide and placebo. The trial is “double blind”, meaning that neither the patient nor the doctor administering the treatment know which group the patient is in.

The primary outcome of the trial is to prove that the treatment is safe. The secondary objectives are, I quote, “to assess stimulated C-peptide production, HbA1c, mean glucose excursions, quality of life scores, and islet cell auto antibody biomarkers of beta cell specific immune responses.” I have no idea what that all means! But if it works, it should allow the patient to be less dependent on insulin injections than they may otherwise be.

I’m keen to do the trial for two reasons. Firstly, it is all for the good of science and developing effective treatment! Secondly, there is a small chance that I will receive the treatment rather than the placebo, and a chance that it may work. I’m not too optimistic though, because apart from anything else, I have already experienced “clinical onset” type one diabetes, which means that I have lost enough beta cells to be insulin dependent. This treatment will not replace cells already lost, and they do not grow back themselves.

Also, in my position, I’m just keen to get to grips with managing the condition. I don’t want to start dreaming of a cure to diabetes as there isn’t one yet, and that will only be setting myself up to be disappointed. A month in, life isn’t too bad so I can live with the injections. I’m also getting very good at mental arithmetic!

The study is funded by the JDRF (I am raising money for them by running the London Marathon) and the Diabetes Vaccine Development Centre.

 

What is type 1?

Hypos

Upon diagnosis, a type 1 diabetic learns about “hypos” straight away. The word is short for “hypoglycemia” which literally means “low sugar blood”. Wikipedia has loads of information on it here. Having a bad hypo is BAD, so we need to be able to recognise and treat them.

In a normal human being, glucose levels in the blood are regulated by the pancreas. Beta cells secrete insulin to bring glucose levels down, and glucagon to bring blood glucose levels up. For a diabetic, if for whatever reason blood glucose starts falling to unsafe levels, there is a problem. Because we have to inject insulin (we have no beta cells), once injected that insulin stays there – still pushing down the level of blood glucose. A normal person would just stop producing it. Secondly a diabetic’s pancreas will not produce glucagon (according to Wikipedia anyway: I don’t understand why, so plan to check with my doctor). [Edit: I asked Dr Powrie and he told me that type 1’s do still have cells which produce glucagon. He said that the absence of beta cells may impair the function of cells producing glucagon, but that its complicated and that the process isn’t fully understood.] So the first (and maybe second) lines of defence against low blood sugar do not exist in a diabetic.

Symptoms of a hypo, according to diabetes.co.uk are feeling dizzy, feeling hungry, a change in mood, feeling sweaty, finding it hard to concentrate or trembling. In severe cases it can lead to unconsciousness, seizure or even death! In terms of blood sugar levels, the rule of thumb seems to be that less than 4 mmol/l is a “hypo”. Given that healthy adults have between 4-7 mmol/l of glucose in their blood, if a diabetic is managing their blood glucose to be near that level, the odd hypo is inevitable.

Dr Powrie is currently getting me to manage down my very high levels of glucose upon diagnosis (30-ish) to aim at 6-12 currently. So I haven’t had a hypo yet. On my second or third night as a diabetic, after taking my long acting insulin before sleep, I did lie awake for a bit wondering if I was having a hypo. I wasn’t. I then came close after walking back from the hospital last week – I was 4.3 when I got back to the office.

So it’s still the unknown for me!

A complicating factor for someone who is active, is that some of the symptoms of hypoglycemia  are the same things that we experience whilst exercising. I’m beginning to see how running a marathon could be a challenge…

In the past day and a half I have now run twelve miles in three lots of four mile runs. After the first two runs, my blood sugar rose from 8-ish pre-run to 11-ish post run. Then just now, my blood sugar fell from 7.6 pre-run to 5.2 post-run. Below the level I’m aiming at. Panic!!! 🙂

To treat a mild hypo (blood sugar level under 4), one must consume 15g of high GI carbohydrate like jelly babies, coke, juice or glucose tablets. To treat a severe hypo, when a person is unconscious, glycogen needs to be injected into the muscle. This stimulates the liver to produce glucose.

In my case just now, I decided I had enough leeway to eat something nice rather than something sweet like a jelly baby, so I had two mini nectarines (yum!) and a bottle of alcohol free Becks beer (drinking alcohol increases the risk of a hypo several hours after consumption). I reckon that’s about 19g of carbs and my sugar level has now gone up to 8.9. Disaster averted!

In the future I will need to be able to judge whether my identical run will increase or decrease my blood sugar. I will ask Dr Powrie for advice of course. My theory is that it has to do with how much short acting insulin, I’ve taken beforehand. But I won’t bore you with the details.

In any case, I’m now more motivated to run than ever. The more runs I do the more data I will collect and the more likely I’ll be able to go ski touring and run a marathon.

What is type 1?