Rage Bolus - a Christmas classic

Disney Pixar's Inside Out. One of my absolute favourite films.

I've seen a few things about rage boluses in recent months and it did that rare thing of making me think, "I should write a post about that".

I can't remember exactly when I first came across the term 'rage bolus', but I think it was quite soon after discovering of the power of peer support and shared experience. I am almost certain that it came from that most legengary of #DOC legends, Kerri Molone Sparling's Six Until Me, and I'm pretty sure that it was Kerri who came up with the phrase originally.

If you live with diabetes and use insulin, even if you've never heard it before, you will instantly know exactly what is meant by a rage bolus. It was phrase that made me go, "Aha! Yes!! I know that thing." Type 1 diabetes can be incredibly frustrating to live with. For all the illusion of 'diabetes maths', and there is no question that sometimes carb ratios and insulin sensitivity factors can and do work (some days / most of the time / once in a blue moon), it is also absolutely the case that there's a lot more going on than food + dose = reliable results. And when things go a bit off track you can feel that you have got it wrong (and sometimes you have!). A sense of personal failure. Feeling like an idiot. So frustrating. Other times you know that you have done all the things you are supposed to do (scrupulously counted carbs in a carefully chosen, healthy meal that you've eaten many times before with reliable results) and still your BG ends up in chaos. Doubly frustrating. Or you just decided to treat yourself (after all everyone else with their functioning pancreases and none of this to worry about were having a lovely time) and then you see it all coming back to slap you in the face, even though you tried your best to work it out. Triply frustrating.

Sometimes there are only so many small, carefully-calculated, properly-spaced correction doses you can try and wait grinding your teeth and stewing in double figures for hours (or days) willing your BGs to stop inexorably rising or stubbornly unmoved before you go OH FOR GOODNESS SAKE and whack in a big ole slosh of insulin to try to get things moving downwards.

And as we approach Christmas I am aware that we are heading into 'rage bolus' season. Meals are likely to be less predictable. Less easily guessed or measured. You may have a little sniffle, or be drinking sugary alcohol, be surrounded by endless nibbles, or be less active than usual, or exposed to any number of other factors that might make decent dose-guesswork much harder.

Let me just be perfectly clear about this - rage boluses are generally a terrible idea. They almost always result in hypoglycaemia, sometimes in a really nasty and stubborn and/or scary low. And crashing from one out of range BG to another at the other end of the scale is likely to make you feel even more frustrated, annoyed and difficult to live with.

So why do we do it to ourselves?

Because, frankly, sometimes it WORKS. And like an addicted gambler feeding endless coins into our BGs fixed-odds betting terminal we have reached the end of balanced and logical assessment of likely outcomes. Sometimes high BGs are the result of a significant underestimation of carbs. Or perhaps it's a dose that hasn't absorbed properly. There are circumstances where we are in 'insulin deficit' of a number of units. And where the food already eaten is still feeding glucose into the bloodstream, and where a dose isn't likely to reach maximum effect until an hour after you grit your teeth and go for it, there can be long, long hours between a measured, cautious correction dose and seeing any effect at all.

Repeatedly, I have heard respected diabetes clinicians suggest that one of the reasons that rage boluses are a bad idea is that taking more insulin doesn't make it act more quickly, it only makes you fall further in the end which leads to likely hypoglycaemia. I think it would be much easier to resist the rage bolus urge if this was actually true. The simple, demonstrable fact is that taking a larger BG correction does make it act faster to reduce high BGs. We know this because we see it happen. And to pretend that it doesn't really isn't going to help me in a consultation. If I take a 0.5u correction dose (as suggested by my pump or smart meter) then after a reasonably predictable onset time I will have a proportion of that 0.5u available to act on my errant BG. If I take a 5u correction, after the same onset time I will have much more circulating insulin available. It may not be exactly mathematically 10x as much, but it will be more. And If I've rage-bolused before and checked after 30 minutes, then an hour, an hour and a half... I will have seen this happen.

Rage boluses do reduce high BG faster.

It's just that they also add chaos onto more chaos.

Sometimes I will make this calculation in my head:

OK so I've currently got annoyingly high BG. I also have some insulin already on board. Along with that, I also have half a meal which I may (or may not) have hoplessly inaccurately estimated that is feeding more glucose in. Some of which will be accounted for by the dose that's already acting. Or possibly it won't. Solution? I'll dose a big ole slug of insulin in now to get things moving in the right direction over the next 2 hours, then depending on how things go I will eat some extra carbs later on to mop up the last bits of the dose.

I mean... what could possibly go wrong?

I once referred to this frustrated act-and-counteract ballet as uncertainty tennis (particularly where my guesses and second-guesses follow in double-quick time and everything overlaps far more quickly that it can possibly have had enough time to actually take effect).

Try to give yourself some head-space this Christmas. Give yourself a little more leeway. Perfection is an illusion. BG perfection doubly so. No one wants to live with a grumpy pancreas-impersonater muttering and grumbling after every meal.

And if possible try to resist the rage bolus urge. Except for the times when it works perfectly and brings you back neatly into mid-range. I mean... those are just awesome! (and incredibly unlikely)

No two days - Diabetes Week 2018

Ugh. Good morning to you too.

Apparently this week is Diabetes Week.

Me neither.

If I get the chance I will try to rattle in a post about the excellent #languagematters work that is being launched this week which hopefully will provide useful pointers to healthcare professionals and people living with diabetes who are trying to have more positive, more enabling, less stigmatising conversations.

In the meantime I have other things on my mind. Because as I posted recently on Twitter my diabetes has been behaving in a peculiarly cantaknerous way recently and I don't see why I should suffer that alone, so I'm inflicting it on you lot.

We've toyed with a few different straplines for our blog over the years, before we settled on the current one, "Because no two days with type 1 diabetes are the same. Except when they are." Which I liked because it was a) slightly annoying and b) didn't really make much sense. Both attributes shared by type 1 diabetes itself.

It is part of the unending joy of playing at being your own pancreas that you are perpetually caught in the tension between the illusion of 'diabetes maths' (deliver x units of insulin to process y grams of carbohydrate plus or minus z percent for activity/illness/alcohol/whatever) and the reality of living with a condition where the sheer bewildering number of variables that might combine, contradict, multiply or cancel each other out, when trying to calculate a precise (or sometimes wildly guessed) insulin dose, mean that it can be extremely difficult to work out why things have gone well, or not quite so well.

As a defence, some of us pancreas pretenders with a few years under our belts attempt to find some ways of reducing the number of variables without expiring from sheer boredom. It's a kind of coping strategy and it can work quite well up to a point. I have eaten pretty much the same breakfasts and lunches for more years than I care to remember. A regular rhythm with slight differences for weekdays and weekends (craziness!) but generally, more often than not, a known number of slices of a single brand of bread along with a medium-sized apple at lunchtime, and a not very adventurous range of fillings/toppings. It is functional eating. Designed to be predictable. Well tested. Evening meals I tend to eat a much wider variety.

And this regularity provides a useful touchpoint. Because as I said this strategy is only successful 'up to a point'. And that point is where something else changes. You have the normal food, you take the normal dose alongside the normal background insulin and the normal level of activity. But suddenly you see anything but normal blood glucose outcomes. If everything is changing all the time, with all sorts of different meal choices/fat contents/dose requirements, it is much harder for me to spot when my diabetes has joyfully shifted the goalposts (again!) and when I need to slightly adjust basal dose or meal/correction ratios.

I've been happily using this technique for years now. And my diabetes and I have got into a sort of gently seething stalemate. I fix the ratios/basal/correction factor. A week or two pass... a small basal tweak is required... then another... then another... And every month or three perhaps a larger overhaul might be required. The basal pattern might slightly change shape, or carb ratios and correction factors may need to be adjusted. Blood glucose normality (Ha! By which I mean the generally expected levels of BG chaos) resumes. Up a bit... Down a bit... Down a bit... Back up a bit. And so my diabetes world turns.

Something odd
More recently I have been seeing something much more unusual, unexpected and irritating going on. But such is the chaotic and fickle nature of living with type 1 diabetes, that it's taken me a while to even spot it was happening, and realise that over the past 2-3 months it has been developing into a bit of a pattern.

The perils of CGM
In a sense, I wonder if I might have spotted it sooner if I'd had less access to CGM. It sounds bizarre, but the difference for me between living with CGM and living without it is that CGM frees me from needing my diabetes to behave predictably. I am able to roll with it and adjust as I am going along much more freely. But that freedom, ironically, may come at a price. Without CGM, I need my diabetes to be much better behaved. I need to know that I can do x and (more or less) expect y to happen without watching it unfold, or being alerted if things are going off-track. I've only been wearing CGM occasionally this year, but it's probably been 50-60% of the time. And that's a lot of weeks of 'adjusting on the go'. Having run sensor-free for 2-3 weeks I realised how much I had lost my fingerstick BG mojo (especially after a full year with quite heavy CGM/Libre use in 2017).

When the weirdness started happening and I was wearing sensors I just worked around it. It has only been since running sensor-free for a few weeks that I've needed to look at the root cause to try to get things back onto an even keel when I'm not able to watch what's going on between the dots.

Pattern spotting
What seems to be happening for me recently, at lunchtime and even moreso for evening meals, is that the speed of absorption of previously predictable meals has substantially changed. While I used to be able to take doses all up front with 20-30 minute delay before eating at lunchtime, and immediately before eating evening meals, I am now needing to use dual waves to substantially delay insulin delivery so that the late arriving food still has insulin available.  What had been happening was a post-meal period where an initial sharp BG rise was followed by a prolonged dip (needing multiple carb top-ups to prevent hypos while the meal dose was working at full strength) followed by a later rise into double figures as the food absorbed when the insulin was on it's way out. Many T1s will be familiar with this 'pizza effect' where the fat delays carb absorption - but suddenly I was seeing it with previously very predictable and cooperative foods.

I can't explain why this has suddenly become necessary. I'm not sure I even care to be honest. Especially since breakfast seems to have been entirely unaffected and is proceeding as it always has. Typical type 1 diabetes. It can't actually make sense. It just has to set new 'rules' for that thing, but leave that other thing as it was. And in another month? It could all change again!

The good news is that I have made some decent progress in the past few days to find a set of splits and timings of dual wave doses that seem to be working better for lunches and evenings (and reduced dose ratios to boot). I will pop a sensor to see a bit more detail in the next few days.

Hope the BG gremlins are giving you all a bit of peace.

Aaand relax! Thoughts on the REPOSE trial

I've been watching Twitter with some interest today, following a conversation about a recent piece of research published by top-notch diabetes Doc, Sheffield's Dr Simon Heller.

I first heard of the REPOSE study (Relative Effectiveness of Pumps Over MDI and Structured Education) in 2016 when I was able to sneak into the Diabetes UK Professional Conference, where Dr Heller published some of the early findings. It has now been formally reviewed and published in full and, as much as I am able to understand it, I find it fascinating reading.

If you are interested, you can read the study here: http://www.bmj.com/content/356/bmj.j1285

The intention of the study was to evaluate whether insulin pumps or multiple daily injections (MDI) gave the better outcomes for people living with type 1 diabetes who have received comparable training and support. Essentially they took over 300 people, spread across multiple centres almost all of whom had HbA1c results over 7.5% and offered them structured education/training in intensive insulin therapy. Of those that undertook the training (267) the study then followed 260 people over 2 years to see what changed. Of the study group, the pump vs MDI split was approx 50:50.

What did it show?
Here are some of the results that caught my eye...

• Supporting people with effective, detailed structured-education/learning/training* in the complexities of managing type 1 diabetes improves outcomes whatever method people use to deliver their insulin (* delete the phrase/s which annoy you the most)
• On average people do a little better on insulin pumps (-0.85% with pump treatment and -0.42% for MDI)
• When results are adjusted for differences which could have skewed the data, the pump 'win' was pretty modest at around an extra -0.25% (-2.7 mmol/mol) reduction in A1c for pump users vs the MDI group - the averages may, of course, hide significant individual variation
• Pump users additionally scored better for 'quality of life' and 'treatment satisfaction'

What I find interesting, reading between the lines, is that this study almost exactly replicates my own meandering journey towards insulin pump therapy. This whole blogging endeavour sprang out of a non-Wittertainment related 'unfortunate event' which acted as a catalyst for me to re-assess my own relationship with type 1. Chiefly that reassessment was that I was nothing like as good at dealing with it as I was allowing myself to think. I then went through a period of significant re-education, not by attending a formal course, but by my own experiments and learning from others living with T1D, many of whom were using updated intensive-insulin-therapy-type approaches. After much work, and many successes (including a reduction in A1c and elimination of severe hypoglycaemia) I realised that I had reached the limit of my MDI skills, and if I wanted to improve further - which in my case meant more or less maintaining HbA1c, but further reducing mild hypoglycaemia and glucose variability, then the next step for me was an insulin pump.

The small irony is that I had been offered an insulin pump repeatedly for going on 5 years at that time, but had never liked the idea. In fact, looking back, I think if I'd accepted a pump in the years before we started writing this blog, and before I had discovered the #doc - I am really not sure whether it would have done anything much for me. Or whether I would have just have tried it for a bit and then stopped using it out of frustration.

No magic bullet
One of my take-aways from the REPOSE trial is that insulin pumps (or any other diabetes technology for that matter) are never going to entirely 'fix' things. This was certainly one of the things that put me off pump therapy for years. If many of my errant results were down to 'user-errors' of judgement, I reasoned, what difference could it make whether that 2u, 3u, 4u dose was delivered by syringe, insulin pen or pump/cannula. It's pretty obvious really - or at least it should be - but a lot of the potential power and effectiveness of insulin pump therapy comes down to the way an individual thinks about their diabetes management. The techniques they use, the strategies they have been given to review and adjust on an ongoing basis. I attended a pump users event when I had only been using Artoo for a few months and was slightly shocked to meet people who had been using insulin pumps for years but had never used (or wanted to use) the combo/dual/square/extended bolus options. It may be that they didn't need to, or that they had never been shown how to. But the lack of curiosity was a genuine surprise.

Not for everyone, and not second best
It is all too easy inside the hothouse of the 'Twitter bubble' to let yourself believe that absolutely everyone is using an insulin pump, full time CGM, Nightscout, and open-source cloud-based Artificial Pancreas algorithm. If you understand even half of that sentence, you will know exactly what I mean. But the simple truth of REPOSE is that insulin pumps are just one option, and they will suit a particular type of person, with a particular set of approaches at a particular time in their lives. That doesn't inherently make them better or worse, and it certainly doesn't make them right for everyone all the time. I loved this post by everyone's second favourite ex-teacher-Libre-wearing-cat-loving-warm-ball-of-GBDOC-loveliness Adrian Long about his continued love of multiple daily injections. People can do brilliantly on MDI, and people can do brilliantly on insulin pumps. What matters most is the support and information/training they have been given. Diabetes is going to be infuriating, uncooperative and apparently willfully disobedient whichever insulin delivery method people use. What I need, in order to face those daily frustrations is a comprehensive set of strategies, and individually tailored personalised goals to make small incremental improvements towards better outcomes. In addition a good deal of understanding and moral/psychological support goes a long way to help.

The shiny gadget effect, sticks and carrots
I do find myself wondering about the possible catalytical nature of a new piece of diabetes technology. For some people, and I think I might be one, having a shiny new diabetes toy (or the promise of one) can re-energise them into a new, more active relationship with their diabetes management. It may also be that people who have never really fancied attending Structured Education, for a whole host of reasons, may decide to take the plunge in order to get access to the technology they are hoping will help.

I'm not altogether sure how I feel about this if I am honest.

I would hope that REPOSE leads to more individualised, supportive care, rather than people being forced to unnecessarily attend officially endorsed education courses purely to box-tick the process (and add delay into the bargain). My own journey towards pump therapy was excellent in that regard. In the pre-pump assessment I was offered the education, but in conversation it was decided that I was already using exactly the techniques and strategies that the course advocated, so that it was entirely up to me whether I thought it would be beneficial or not. I would not want people who might excel at pump therapy to be put off by a hardline education requirement... but at the same time, my own experience tells me that often you don't know what you don't know. And that many people who attend diabetes education expecting very little from it actually leave the course with their relationship with their own diabetes utterly transformed.

Worries
My slight worry in all this, is not what this study actually shows, but more how it might potentially be interpreted and skim-read - short version: pumps expensive and not much better. The current guidance over the use of insulin pumps (and when people may additionally benefit from CGM) is pretty clear cut. And yet, some people in some places find themselves having to jump through interminable hoops, or simply get enquiries brushed off for having 'too good an HbA1c'.

Insulin pump therapy really does work well for some people, but it is expensive and the 'working well' does not come automatically. What I hope comes out of all this is a greater level of support and assistance both for pump users and MDI whizzes to aim for those elusive  and aspirational treatment targets alongside a decent quality of life and an avoidance of diabetes burnout. With finite NHS resources it is only right that these therapies are used effectively, and clearly a vital component of that is the support, education and encouragement that people receive, not just initially, but on an on-going basis.

Simply blindly chucking technology at T1 is never going to work.

I'd be interested in your thoughts on this trial, and how you think it might impact you in your journey with diabetes. Please do leave a comment below.

Night-time nonsense. Perfection isn't possible.

The darkest hour, just before dawn, yesterday

I stumbled across this little bit of research again today. And while I know I had clocked it in the past, and was aware of it - this time it came as a huge relief.

I have not been feeling altogether cheery about my diabetes of late. Off and on for something getting on for a year I have been feeling more than usually grumpy and disheartened about it. I have written (mercifully few) ranty grumblings about it every so often. Partly driven by a couple of clinic appointments where I somehow managed to spend the weeks before and afterwards twisting and distorting either real or imaginary conversations into spirals of judgement, impossible requirements and self-destructive behaviours. Quite reasonable and well handled suggestions suddenly becoming a cloud of frustration and rage in my head, and a lead weight in my heart.

Many people would describe this as 'diabetes burnout', but that always sounds a bit too dramatic and significant. Mine is perhaps more of a 'diabetes weariness', with occasional outbursts of 'OH FOR GOODNESS SAKE WHAT ON EARTH IS THE POINT'.

Diabetes is such a mind game. Confidence and self-belief count for a lot for me. I do better when I feel things are going better, and I am much more likely to go off the rails or make (deliberate/knowing) poor choices when my levels are all over the place anyway.

You may recall that one of the changes I had been trying to make related to my remaining overnight hypoglycaemia. Nothing like as bad as it would once regularly have been (I have not had any severe hypos either in the day or overnight for years) but time spent hypo overnight is still something I really want to reduce further. Well after the best part of a year, and having tried a whole bunch of different approaches (some disastrous, others not so bad) I'm not sure I'm very much further forward. Without continuous monitoring it's hard to be 100% sure, but it seems I will still dip below 4.0mmol/L at some point on something like 3 nights in a month. I am now running most of the other nights significantly higher and that has resulted in an increase to my A1c by something like 0.5%-1%. On the plus side though, my number of BG checks below 4.0mmol/L last month was slightly lower than normal (whatever normal pretends to be).

So some things are a bit worse. And other things are a bit better. Well that all sounds familiarly 'life with T1D' to most of you I'm sure.

But here is the thing - if you, like me, struggle with variability in levels overnight. There is a LOT we can do to reduce it. There are strategies that we can put in place to really help. But it will never be perfect.

And we have to find a way to make peace with that.

During the day, you can do your best to reduce variability - to make good food choices, to dose carefully, to make adjustments around activity and exercise. And all the time you can watch and check and see how you are getting on. Check. React. Adjust. Move on.

What this piece of research, published in Diabetes Journals in May this year, demonstrates though - is that overnight insulin requirements are likely to be even more variable than those during the day. Think about that for a minute. In almost 2,000 days and nights that were measured and compared there was more variability in insulin need overnight than during the day. More variation with NONE of the variations in food, activity and all the rest.

That doesn't mean that it is not worth trying, of course. We still need to do the best we can to make up for our errant pancreases letting us down on the whole insulin-production front. Keep checking, reviewing and adjusting. Throwing in the occasional overnight basal test every now and then ("Hooray!", said no one ever). But it is worth bearing in mind, if you are struggling this week, that you are not on a level playing field. What works well most nights might let you down tomorrow, and that is not your fault.

Perfection is not possible. All we can do is our best.

Link: http://care.diabetesjournals.org/content/39/5/830.short

Half unit Lantus insulin pen free on prescription - at last!

Thanks to Twitter's @ColonelBlightly for use of the pic.

About bloomin time!

I had heard about this some months ago, but then promptly forgot about it.

In April 2014 Sanofi launched the JuniorStar, a 1-30u insulin pen that can be used with Lantus (glargine) insulin and delivers doses in 0.5u increments. Woooo hooooo!

During my least years on MDI, wrestling Lantus into submission was more or less a full-time hobby. My basal requirement changes frequently in response to a wide range of factors (differences in general activity levels, warmer/cooler weather, or more frequently... just because it feels like it). On pump these tweaks are easier to manange, but more than once on Lantus I would seem to find myself in a position where a change of a whole unit up or down was just a bit too much, and I would have to settle for a Hobson's choice dose. It was particularly frustrating because of the 'some units are more equal than others' weirdness that I frequently see when my basal insulin dose is just a little bit out. A unit too much or too little of Lantus over 24 hours could leave me scoffing a massive stack of carbs to stave off relentless lows, or chasing high BGs with units and units of extra rapid-acting insulin corrections.

Diabetes is biology, not maths - and we can't always expect the numbers involved to behave in a predictable, logical way. This will be news to none of you.

So HURRAH to the fine French pharma folks for finally stepping up to the plate and launching a 0.5u pen. Mysteriously though Sanofi are yet another pharma company to market a half unit pen with a 'Junior' mindset (NovoNordisk did the same with the NovoPen Echo). It is as if only children could possibly find a use for half-unit increments. I can only hope that adult patients will not have difficulty* in accessing this potentially very useful addition to their Diabetes Gubbins stockpile.

EDIT: *Due to the ridiculous immediacy of the flow of information in the Twit-o-sphere, having posted this just a few minutes ago someone has already pointed out that the JuniorStar can be obtained directly from Sanofi, without the need to jump through tortuous prescription hoops and bothering your surgery/clinic. Simply contact the Sanofi helpline. Thanks to @davidcragg for the tip :)

Getting animated

I was remembering back to my heady art college days recently, particularly some early experiments with animation. Animators at the Disney studios developed 12 principles of diabetes animation in the 1930s, including anticipation, follow through, slow in/slow out and, of course, squash and stretch. All these seem to have an uncanny resemblence to how my blood glucose levels have been behaving.

From time to time (read more or less constantly) I seem to go through periods of change where I need tweak various doses, ratios and settings in order to get them to behave normally*, so that the dose and timing of insulin for a meal which worked perfectly last week might be expected to work again for the same meal this week - in the SAME way (craziness!).

* I realise, of course that this has no actual meaning in day-to-day diabetes management terms. But it is, nevertheless, a nice idea.

An obvious one might be during a period of illness. You expect your insulin requirements to increase at some point, to some unknown level... but it's very difficult to actually anticipate with any certainty what the change might be and when it might happen. Even with illness, some coughs and colds behave completely differently to others BG-wise. Some are all up front. And it's only later when the sore throat appears that you understand why you've been fighting double figures (200s for US readers) for days. Other times you can have all the symptoms of a stinking cold, but BG just potters along entirely unaffected. Then if you have needed to up all your basals and/or doses, you know that at some (again unknown) point in the future you will need to rein them all back in again or you'll be landed squarely in hypo-central.

Another favourite is a fall-off of gym visits during a school holidays. I'm just coming into that now - the girls break up for Easter today. As the rhythm of the house changes I find it all but impossible to get up and out early enough to get to the gym and still be able to start work on time. For the first week things often toddle along as normal, but then one day in week two BAM! It's as if my insulin has turned to water. So I try to make sensible, small changes to basals. Enough to have an effect, but not so much as to go too far the other way. The constant balancing act. This usually involves a frustrating few days of doing battle with double-digit readings, however careful I am being with food and carb counts.

More recently I have also noticed an unusual phenomenon which I will be watching with interest this time. In animation 'slow in/slow out', 'squash and stretch' and 'follow through' refer to a more realistic way of handling movement. Movement tends to begin gradually, then accelerate, then slow again into changes of direction. You can almost feel it in yourself as you move about. Squash and stretch and follow through relate to the way animated objects often appear more satisfying if there is a little elasticity added. Rather than just stopping hard at the end-point there's a little extra movement beyond it and then a bounce-back to rest.

This seems to be exactly what happens with my dose tweaks too. I battle with highs for days struggling to find the right level of increase. Then I find it and I get perhaps a day or two of good numbers. But then I seem to get a little 'bounce back' and have a day of low readings where I have to dial the adjustments back down again to counter. And then things settle. At least for a while... before we're off again.

I think it's important for Healthcare Professionals to understand the relentlessness of these daily adjustments when they peer rather disparagingly at a printout of ropey numbers. There is no 'right' set of ratios and correction factors, only 'right for now'. This darned condition doesn't stand still for a minute and all the time you are playing catchup you are logging results that are outside of what you'd like to see, not because you are not trying hard or putting the effort in, but just because the rules have changed. Again. If I get a settled week or two I count myself lucky. But I know that membership of #teamsmug is usually very short lived.

That's all folks!

Playing golf on a blustery day

I was reminded this morning of something which struck me during a conversation with my parents last year. Some time ago they took up golf, and as with many sporting endeavours they have embarked on before they plunged into it headlong, devoting a huge amount of time and effort into improving their game. Taking lessons, trying new kit and clubs in the hope of finding some new 'magic ingredient'. And they got better. Much, much better - but never seem quite satisfied with how things are. Always want to improve a little more.

In this respect it resembles diabetes almost exactly.

Now I don't play golf, but from what I can see it appears to have been deliberately designed to be almost unimaginably frustrating on almost every level. For starters the equipment involved and physical practicalities of hitting a tiny ball long distances by whacking it with an unevenly-shaped weight on the end of a long stick almost guarantee that no two attempted shots are likely to yield the same results.

In this respect it resembles diabetes almost exactly.

And even if you could somehow miraculously steel your sinews to perform each swing with robot-like precision it would still not be enough. The nature of the playing field itself, with gusty inconsistencies of wind and constantly variable grassiness/sogginess/bounciness/sandiness of the ground (apologies for the use of highly technical golfer's terms there) could still turn yesterday's perfect delivery into today's disappearance into the lake.

In this respect it resembles diabetes almost exactly.

And then of course, there are those brave souls who venture far afield. Just sticking to the same course day-in, day-out is OK for a while, but soon there is a temptation to reach for a little variety. So rather than restricting themselves to a familiar course where their previous experience might at least count for something, they voluntarily put themselves in unfamiliar surroundings. Each shot becomes a wild stab in the dark based on little more than gut instinct and a laughable attempt calculate (hah!) the interaction of a myriad of contradictory variables.

In this respect it resembles diabetes almost exactly.

On Friday I woke to a BG of 7.3 (131). I ate two slices of toast and because I was going to the gym I reduced my bolus by 80% and set a TBR (temporary basal rate). At the gym I did my usual routine for the usual length of time. I had a measured small amount of fact acting carbs before and after. I tested when I got back and was 10.0 (180).

This morning I woke to 7.6 (136). I ate exactly the same breakfast. Exactly the same bolus and basal tweaks were made. I did the same set of exercises over the same length of time. Ate the same number of fruit pastilles. Got back to 6.4 (115).

Now I'm fairly happy with either to be honest, but the difference in the two days amounts to almost the entire 'range' that people living with diabetes are supposed to aim at. And I didn't change anything.

With Artoo I have a cracking set of clubs, it's just that I'm trying to play golf on a blustery day.

Rediscovering porridge

Someone I 'met' on a forum who started on an insulin pump a year or so before me said that in some ways she had to relearn much of what she thought she knew about her diabetes. Many tried and tested observations, and theories as to what was happening seemed no longer to apply. Switching to a pump so fundamentally 'changed the rules' that almost everything had to be evaluated from scratch.

I've had a glimpse of what she meant recently when I decided to retry porridge (oatmeal for US readers) as a breakfast choice.

I've always quite liked it in the winter and it has a reputation for being helpful cholesterol-wise. Mostly though it has a reputation for releasing its carbohydrate slowly and steadily which is very useful if you are trying to keep BG (blood glucose) levels after meals under control. For many years I ate cereals for breakfast, basing my choices on what I had been told - this is low GI, that is slow absorption, blah blah blah...

For many, many diabetic years I tested primarily before meals with ad-hoc other tests if I 'felt funny' or needed to drive. This was OK in its way, but never really let me see or evaluate what was happening after eating different foods. I didn't look at those choices critically enough for them to make any real sense. It was only really after 'meeting' folks with Type 2 Diabetes online who have food choices as their primary weapon in the struggle to control BGs that I realised how little I knew from testing about what to expect from different foods.

GI values are all very well, but they are only an average from a pretty meagre sample. And averages (as anyone with a BG meter can tell you) can hide a multitude of sins.

Having embarked on some after-breakfast testing a few years ago I quickly determined that all cereal is evil. There was just none that I found I could eat and remain in single figures (below 10.0mmol/L 180mg/dl) at 1-2 hours after eating. Porridge seemed a particularly bad example. I may as well have been eating jam.

So I concluded that for me porridge was not slow release at all, and stuck to Burgen soya and linseed toast with much better results.

I knew that at least part of the problem was a 'gap' in basal coverage that made breakfast particularly tricky time for me. I took my Lantus at breakfast time and while the last dose had faded and the next dose was still dragging its heels in 'onset' I had perhaps an hour with less basal insulin than I needed.

The pump of course, has fixed this. Continuous almost infinitely tweakable rolling patterns of basal insulin trickles can allow for the most challenging of basal requirements.

Once I had a basic basal pattern working OK I began to wonder whether I might be able to cope with a little porridge every now and then. The first few results are very encouraging. This morning I rose from 4.7 (85) before breakfast to 6.9 (124) an hour and a half later.

Porridge it seems is back on the menu. Score 1 for teampump.

New big meal strategy: thirds

Following on from my recent moan about errant BG levels during holidays I posted on a forum that sometimes it seems to come down to a choice between food variety and good levels. If I stick to basically the same meals week after week and use tried and tested doses I tend to have far more consistent results.

This is, of course, blindingly obvious.

But it's not really an ideal long-term solution is it? In fact it reminds me a little of a joke by Tommy Cooper: "I went to my doctor the other day and said, It hurts when I do this" [briskly raises left arm above his head] "He said, Well don't do it then". Trouble is I really like food, so the wider variety and range of quantities I can eat the better - not necessarily all the time, but certainly every now and then. But these occasional guilty pleasures are not at all enjoyable if they always result in disastrous BG levels.

Part of the frustration stems from the fact that my insulin:carb ratio which in theory should allow me to eat pretty much whatever I like, seems to be less than predictable in certain circumstances. Almost everyone, I suspect, who adjusts doses this way will be familiar with the experience of counting carbs in an unusual meal carefully, taking the 'right' dose, only for BG chaos to follow. This can be particularly frustrating where I know I can achieve pretty good results for notoriously difficult meals (pizza or fish and chips for example) if I eat the 'usual' amount and take the 'usual' split dose, even if the actual carbs involved are not measured or counted very accurately at all.

A few very interesting comments came out of my forum post. I'm always suspicious of 'rules of thumb', but someone remembered a suggestion from John Walsh's excellent 'Using Insulin': Take your weight in pounds and halve it, then use that figure as grams of carbs - this gives a good indication of the meal size above which your insulin:carb ratio may well break down. It might not work for everyone, but it's pretty much bang-on for me. Someone else suggested that above a certain point they found they needed to add approximately a third to the calculated dose for it to work well.

Last night, we had a mixture of 'heat it and eat it' ready meals from the supermarket, and I ventured a pudding too. Overall mine ran to just over 90g carbs with a fairly high fat content. Not horrendously high carb load, but enough in recent weeks to cause problems. I decided to experiment with the new 'adding a third' approach and split the dose as if I were eating fish and chips. The results were excellent - 4.8mmol/L (86) before the meal, 5.0mmol/L (90) at one hour and 6.2mmol/L (112) at just over two hours. By hour three I was still pottering along at 6.1mmol/L (110) with a mix of the split doses still active. By suppertime I'd dropped back to 4.7mmol/L (85). That's a little low to go to bed on, so I had a small snack to prevent a dip overnight. FBG this morning was 5.0mmol/L (90). Cracking!

It's a bit early to believe that this will solve all my problems for unusual
meals in the future, but it's certainly a system I'll try again.

Not always easy

I'm having a slightly difficult time at the moment. Not really, but I've just had a whole load of weeks with almost bewilderingly good control. I have a blog post brewing called something like 'How much I love my Accu-Chek Expert' that I'm hoping to add later this week.

Things never stand still with diabetes though. It's a constant grind of getting it to work OK, then things seeming to change for no readily apparent reason, then working out what these 'new rules' mean while enduring days of chaotic numbers, then getting it to work OK again... and on... and on... and on...

I just read a quotation that someone posted on a forum which so eloquently summed up this feeling that I wanted to share it here:

“And even the constant need for decisions might be tolerable, if only the results were predictable. Few things generate burnout like the awful frustration of having followed instructions and done everything just right and still to be failing to get the diabetes into control. At those times it seems no use to continue to try.

Think how discouraging it is to fail at something you really wanted to do. Then consider what it must feel like to be failing at something you didn't want to do in the first place.”

Joan Williams Hoover

Owning your targets

I replied to a forum thread today, and only as I was posting did it strike me that I've completely changed the way I view my blood glucose target range in the last year or so. A mother with a teenage type 1 diabetic daughter was expressing concern about the extra fingerstick blood glucose tests, basal testing etc that would be part and parcel of her move to pump therapy. She then said she had to text to remind her daughter to do a test, and text back the results. It made me wonder how that felt for a young person. Whether they would feel that the tests were for them at all.

And then I realised that was exactly how I had felt about these things too.

The recommended levels for adults with type 1 diabetes in the UK are 4-7 mmol/L (72-126mg/dl) before meals and less than 9mmol/L (162mg/dl) by two hours after meals. This is, frankly, a tiny target to try to hit. To be honest the permitted percentage of inaccuracy on a BG meter is 10%. So the meter itself is only accurate to one sixth of the target range some of the time. I've had 20-odd years of consultants telling me that I was 'doing fine', but 'should try to have not quite so many highs and avoid those lows'. I've always just smiled through gritted teeth at such comments. "There speaks a person" I would say to myself, "who has never tried to guestimate the carb load and absorption rate of a meal, and tried to match it precisely with the activity profile of an insulin injection, taking into account any abnormal activity level during the day." If they wanted me to hit their stupid target, they should have made the darned thing a bit bigger.

In a small, but incredibly crucial way though, my mindset has changed. The shift was so slight I only noticed it when trying to look at the same issue from someone else's point of view. The range, is still as tiny, but it is now my range. Whereas before I would grumpily think, "well that's just impossible... I'll aim for 4-12, but for you to ask me to do any more than that is just unreasonable" I now see 4-9 as my target for me.

I've never tested so much in all my 20 years with diabetes as I have over the last 14 months. I've never voluntarily gone without so many meals to check on my basal insulin's activity. In all likelihood I would not be doing so without meeting other diabetics online. Diabetics who hit their own tiny target ranges. Not every day, but often enough to prove that it is at least possible.

Once you understand that the target (whatever you decide that it is) is your own, all the effort required to aim for it, and let's not pretend that is isn't a LOT of effort, somehow becomes much easier.



Edit: Just re-visiting this post after several years and I have realised that in the time in between I have altered and changed my targets on more than one occasion. And this is fine too. Currently I'm finding 4-10 gives me less opportunity to berate myself over high readings with an additional soft lower limit of 5 which I will treat as if low to give myself a little more wiggle room. What's important is that I feel these are what I have decided to do for me. Not some impossible nonsense handed down from on high.

My DOC-iversary - 12 months that changed my life

You have changed my life.

It doesn't matter if this is the first blog post you've read or the thousandth. Whether you comment on diabetes forums the world over or lurk in the background of just one. The Diabetes Online Community is so much greater than the sum of its parts, and by reading this, whether you are diabetic yourself or just know someone who is (and frankly these days that is pretty much certain) you can now count yourself an official member of the D-OC. I'll pop a badge in the post to you. Get yourself a 'Blunt Lancet *' tee and wear it with pride.

As Jane wrote on Friday, this weekend is the anniversary of the unfortunate incident that triggered the birth of this blog and my discovery of the support, wisdom and hilarity to be found among online diabetics.

You have helped me to turn a corner with my diabetes. And I didn't even know I needed to turn it.

If you have lived with diabetes for some time and have just got used to 'the way things are', knowing really that this or that is not quite right, but unable to find any way forward. If your doctor seems happy enough with what you are doing, though suggests you should probably 'improve your control a bit', without ever seeming to be able to suggest any practical way to go about that (or at least none that you believe would have any effect). If this is you, as it was me, then take a look around. There are thousands of diabetic lives out there and someone will be going through what you are. Someone will have tried something that might work for you. Someone will post and answer to your forum question that will get you thinking. Someone will be there simply to offer support and understanding for the unfairness and frustration of it all.

In some sense the changes I have made are tiny. The improvements only marginal and fractional. But they have made all the difference to the way I feel about diabetes. Here are my top 5 discoveries from 2010:

1. Get your basal right
You can test this systematically, and until your basal is right everything else will be all over the shop. Your basal profile is not as flat as you have been told, and there are a number of timings and splits of dose that will work for different people. For pumpers, basal profiles are almost infinitely tweakable.
2. Count your carbs
Not something I learned this year, but something I was horrified to discover that others were not being taught. Utter madness.
3. Love your pancreas but watch out for your liver
Don't be too hard on your pancreas for rather letting you down on the whole insulin production front. It's still doing all sort of useful things digestion-wise. Your liver on the other hand probably needs a good talking to. Mine has a habit of gleefully dumping glucose into my bloodstream at the most in-opportune moments (dawn phenomenon or Somogyi effect anyone?). This can make test results seem chaotic and confusing.
4. Don't believe the hype
You might have been told which carbs release slowly by a dietician. You might be eating high fibre and low fat with 'heart-healthy' starchy carbs. Unfortunately though there is no way to tell what will happen to your blood glucose levels after eating something without testing on a BG meter. And there is nothing heart-healthy about constant post-meal BG spikes. The difficulty is that everyone is different. What is fine for one person will be a BG diaster for another. There are a lot of things I had believed to be 'safe' which I have dropped from my menu this year following 1 hour and 2 hour post-meal tests. Additionally diets high in carbs seem to lead to high cholesterol levels whether they are low fat or not. Moderation, as with so many things in life, seems to be the key.
5. One test at a time
Jane tells me I'm still learning this one. If you get a rubbish day/week/month of BG levels try not to beat yourself up about it. Write everything down, look for patterns, ask questions. Look online for others who have had a similar experience. Don't make changes too quickly, take your time and see if results are repeatable before you decide what you think is causing what. This is the hardest lesson of all. But I'll keep working at it.

I have an annual review coming up in a few months time. I'll be very interested to see if the improvement I feel in my day-to-day diabetic experience is shown in my HbA1c level.

Here's to the next 12 months of D-OC discovery.

Mike


* Blunt Lancet, 90's diabetic rock supremos created by US blogger Kim. Despite being more than a bit 'made up' you really can get a t-shirt (profits in support of the Diabetes Hands Foundation): www.cafepress.com/BluntLancetMerch

Diabetes is enough to drive you nuts

I came across this description from DiabetesDaily (a largely US-based diabetes community/forum/collection of blogs) today:

Diabetes is a complicated and unforgiving disease. To manage successfully, it requires knowledge, problem-solving skills, and a reservoir of patience. Even then, life happens and throws everything into chaos.

It pretty much sums up my day yesterday.

Diabetes hasn't made me smile in a long time, but some results yesterday were so crazy, so illogical, so utterly ridiculous that I found myself grinning all over my face this morning.

I've been having a pretty good run of results in the last few days - now that the craziness and unpredictability of Christmas eating has passed. I began yesterday morning with a bg of 8.0mmol/l (144 for US readers). A bit on the high side, but not too bad. I had a pretty standard low GI breakfast (two slices of Burgen toast) one that I know usually behaves itself and left my usual 45 minutes between bolus and eating. By mid-morning I had spiked way up to 14mmol/l (252). Took a correction and was nicely back in range with a 7.2 (130) before lunch. I put the spike down to a little liver-dump tomfoolery and left it at that.

For lunch I had two slices of Burgen again, low fat mayo and some leftover chicken. Plus a smallish Clementine to finish. Left 15 minutes between bolus and eating (which is usually enough at lunchtime for the Humalog to get going). Carbs-wise that makes around 35g so I bolused at my usual ratio (4u). 30 minutes later I'd only risen by a tiny 0.2mmol/L (meter inaccuracy notwithstanding). BUT two hours after lunch I checked again and had shot up to 15 (270).

So let's get this straight... I ate completely familiar foods, counted the carbs, took usual doses and in both cases ended up spiking to the sort of level I'd usually like to avoid.

At this point, our evening meal looked like a scary prospect. The girls were given horse-riding lessons from grandparents at Christmas so they were going to be back late and hungry. We'd decided to pick up food from the chip shop to make things easy. So this meal is massively high in carbs AND high in fat AND on a day when the usual rules seem not to apply. Hmmmm tricky! But what could I do except use my usual (and often fairly successful) approach of a stab-in-the-dark at the carbs and a 60:40 split dose 60% before eating and the rest an hour or so later.

Pie and chips. Carbs were estimated at 140g (I know... I know...). 10u up front with a pre-meal reading of 4.3 (78). An hour later I was up to 7.5 (135) and took the second half of the split - 3u to allow for being slightly close to the edge before the meal. At three hours after eating I had dropped back to 5.2 (94) still had a fair amount of insulin on board so had a couple of leftover Christmas chocolates to play safe. Went to bed at 11pm at 5.9 (106) with a reported 1.5u of active insulin according to Colin (my Accu-Chek Expert). I figured that at least some of the evening meal was still chugging through my system, delayed by the amount of fat involved so left it at that, trusting the chips to see me through the night.

I woke at 5am. This is very unusual for me, and I immediately assumed that my BG must have dipped into hypo during the night. A blood test revealed 5.7 (103) so I just went back to sleep.

Woke this morning to a reading before breakfast of 5.5mmol/L (99) and it was then I started grinning. Both my low fat, lowish carb, low GI meals in the day had ended badly, but a pie & chips blowout followed by chocolate and a glass or two of wine had resulted in spectacularly good levels. This is the mystery of diabetes. This is why it drives us crazy.

Now I'm not suggesting we all eat pie & chips constantly from now on, but after yesterday it is quite tempting :)

The carb counting black hole

A few weeks ago I wrote an open letter to Diabetes UK raising concerns about the advice given to diabetics when prescribed insulin. There are something like 6,000 newly diagnosed type 1 diabetics every year in the UK. If you add the number of type 2 diabetics put on insulin the figure would rise substantially. I'm not 100% sure when DSNs stopped giving carb-counting advice as standard in the UK, but at a guess it would be 10 years ago. If only half the newly diagnosed T1s are affected that's still 30,000 people being given insulin doses to take every day and no information to manage them effectively.

I am so outraged at the current situation that I copied the letter to my MP, the Minister of State for Health (with responsibility for long-term conditions) and NICE (the National Institute for Clinical Excellence). I'm pleased to say that I have now had responses from everyone. The content of some of those responses saddens me greatly.

The first reply I had was from my MP, who said she had written to the Department of Health and would let me know when she received a response. So far so good.

10 days later I had a reply directly from a Department of Health 'customer service centre' minion. The basic thrust of the letter was that the value of patient education was recognised and that luckily they have already put guidelines in place that make it all fine. DAFNE... local NHS... local PCT... allocation of budget... maximum benefit of local patients...

The reply from NICE went into detail about how carefully they sort out and their guidelines. Guidelines which, in the case of T1 diabetes in the UK, are not up for review until 2013.

And here's what is depressing about these responses. The NICE guidelines themselves are not that bad. But they don't actually say anything. They only cover broad principles, and it would be foolish to suggest that they could do anything else. If you have been told (by your trained DSN and/or dietician) that you can take your fixed dose and then eat whatever you like, whenever you like as long as you wear odd socks, this advice meets NICE guidelines. If your local PCT has decided that this advice constitutes a 'structured education programme' anything goes.

What the NICE guidelines do say is that proper education for T1s is crucial. They state that everyone should have access to a DAFNE course, or equivalent. They make the point that typically, a properly educated carb-counting diabetic reduces HbA1c by 0.9-1.1%. This correlates to something like a 30-40% reduction in development of diabetic complications. Even at DAFNE's fairly hefty £545 per person/per course pricetag it is still expected that the reduction in complications (and their attendant cost) will put PCTs that run the course in profit. Some PCTs however are taking a rather shorter view of things. Some patients are paying the cost.

By far and away the most encouraging, proactive and positive response I had was from Diabetes UK. Zoe Harrison, a DUK clinical advisor and DSN, took the trouble of telephoning to talk things through with me. She agreed with me that there is a black hole in diabetes education in the UK. She and Diabetes UK recognise that thousands of diabetics are being badly let down by their clinics. Not taught to carb count. Not taught the relationship between carbs on the plate and units of insulin injected (even when those doses are fixed).

DUK have added a comment to the earlier post which talks about patient education materials which they have developed and successfully trialled, and other materials being developed to educate the Healthcare Professionals themselves. Budgets permitting...

Speaking of budgets, it's a sobering thought that just one trip to A&E by a diabetic who gets into hypoglycaemic trouble because they have never been taught to count, measure or monitor their carbs costs the NHS £88 £1,034. The cost to the NHS of three afternoons of training in a local Diabetes Clinic? £66.

I sincerely hope DUK's efforts pay off. Money is found. Diabetes clinics start telling people what they did about carbs 20 years ago. The alternative? Here are some anonymised experiences under the current guidelines:

"Well you will not believe it but if you are not taught the basics of carb counting then guess what, the advice is zero, zilch, nada, nuffink" ('A' type 1)

"I was diagnosed as T1 6 years ago. The basic introduction I was given was just that. Basic. I was instructed in MDI during one very traumatic diagnosis day.We touched on carb counting and DAFNE, but only to say that they existed and that I might one day be taught." ('M' type 1)

"I was told what dose to take and sent on my way, I had to report what my pre-lunch figures were on the phone to the nurse every day for 10 days and she kept on telling me to increase the morning dose by 2u. What I didn't realise, was that I was unwittingly reporting the pre-lunch figures which were high as a result of over-treating the regular 11.30 am hypo. After some months I was fed up with the swinging BGs, regular hypos etc and weight gain that came from heeding the dietitian's advice to eat starchy carbs with every meal. So I got online and met a group of people who helped me. I fought tooth and nail to get onto MDI which I did. I asked the DSN (yes, I've seen a real one twice) about Carb counting and she said "We don't offer that service" ('PE' LADA)

"I don't get this carb counting malarky, I have asked my DSN but she says, 'It's complicated and we'll look at it in the future.' In fact I don't even know what carbs are..." ('P' type1)

"...spoken as one who has been refused carb counting education and was put onto 4 units novorapid with evening meal" (V type 2)

"A basic introduction would suffice, but if DAFNE is available, take it as it gives you a much better understanding of all aspects of the condition. Personally it turned my diabetes around." ('NR' type 1)

"My HBA1C about 7 months ago was 9.2, I started carb counting in September 2010 and my HBA1C in October was 8.3. Yesterday my HBA1C was 7.8!! really pleased with that, especially as I've not had many hypos to give a better 'false HBA1C'.

I'm not after any pats on the back but I do feel annoyed that I have had Type 1 Diabetes for 14 years before anyone had even told me about carb counting!! It makes me wonder how many other type 1's are out there in the same position?" ('P' type 1)

If you are interested, you can read the original letter to Diabetes UK here: Not counting, the cost.

Not counting - the cost. An open letter to Diabetes UK.

Dear Diabetes UK

I was diagnosed with type 1 Diabetes in 1991 and joined the then British Diabetic Association almost immediately. Over the years I have come to value the support, research-funding, campaigning and much of the information that the organisation provides. However I am writing this letter because I feel there is a significant and quite dangerous problem with the advice being given to newly diagnosed type 1 and newly insulin-using type 2 diabetics in the UK. I am appealing to Diabetes UK to work with the NHS and healthcare professionals to implement new guidelines which provide essential information to new insulin users.

The problem is this: People are being prescribed basal-bolus insulin regimes without sufficient information about carbohydrate counting.

The problem does not appear to be universal. Some HCPs still do things the 'old way' and provide information about measuring the quantity of carbohydrate to match insulin doses but in a few weeks' research I have come across dozens of people, diagnosed over the last 10 or 15 years who were told little or nothing about the relationship between carbohydrate and insulin when they started a basal-bolus regime.

Some patients have muddled through, working things out for themselves, others have sought help and advice from peers or online forums. Even more worryingly, some patients report that they have asked their clinic or surgery for more detailed information only to be told that, "We don't offer carb counting here...".

This is insane. This is quite frankly, not good enough.

People are being instructed on what doses of insulin to take, and only being told to eat a diet which is low in fat, high in fibre and contains 'some' starchy carbohydrate at every meal.

When you inject a bolus dose of rapid-acting insulin the clock begins to tick. If you have not eaten enough carbohydrate within something like 30-60 minutes then your blood glucose level will begin to fall. If your level was within guidelines before the meal then the risk of hypoglycaemia becomes almost a certainty. On the other hand, of course, if your meal contains too much carbohydrate then your blood glucose level will rise steeply above and beyond the recommended limits putting you at greater risk of developing diabetic complications.

However, and this is the nub of the problem, 'not enough' and 'too much' become meaningless if the diabetic has never been instructed to measure the amount of carbohydrate they are eating. The problems are all too real, and the solution all too simple.

Every diabetic put on basal-bolus MDI (multiple daily injections) therapy must be given instruction on estimating, measuring and monitoring the amount of carbohydrate in their diet.

When I was diagnosed 20 odd years ago this was the case. I was introduced to a simplified 'exchanges' system, where fixed doses of insulin were matched with specified numbers of 10g 'exchanges' of carbohydrate at every meal. Even with that basic framework in place retaining good diabetic control is far from easy. Without, it is all but impossible. Consider this example:

Mr X, a newly diagnosed type 1 diabetic is told to administer 5 units of rapid-acting insulin to cover his evening meal and to eat low fat, high fibre diet which includes starchy carbohydrate. On Monday he has gammon, vegetables and new potatoes. On Tuesday he has soup and a wholewheat roll. Wednesday's meal is a wholewheat pasta bake. His meals, while in line with his dietary guidelines, contain approximately 50g, 35g and 70g of carbohydrate respectively, and yet he takes the same 5 units of insulin each time. One evening he is fine, another he goes hypo, another he ends up high. In 6 weeks he sees his DSN (diabetes specialist nurse) who tells him that his HbA1c is worryingly high and that he is having too many hypos. If his DSN looks at his blood glucose diary there will be a scattered pattern of highs and lows because, though the insulin doses are fixed, the carbs being eaten vary significantly and are not being measured or monitored. The amount of carbohydrate Mr X needs to match his fixed doses may be different to Mr Y. It may change over time, or if Mr X is more or less active than usual. But unless he is monitoring what he eats, he and his DSN will have no information on which to base informed changes to his regimen.

Some diabetics for whom 'MDI has failed' are put on insulin pump therapy. At which point they are automatically given instruction on carbohydrate counting, and rightly so. For many this is a lightbulb moment. But in all honesty there is little real difference in a 5 unit bolus given by pump and another by injection. Both will require a measured response in terms of carbohydrate eaten to avoid hypo- or hyperglycaemia.

I have no idea why it was thought better to give people less information to help them manage their diabetes. If you go back 15 years or so it seems everyone on insulin was taught the importance of counting carbs. When I was told by my own DSN that "we don't really do exchanges any more" I wondered what had replaced it. It horrifies me to think that what replaced a simple understandable framework was, in some cases, nothing. This can only have lead to poorer control, worsening HbA1c results and, by extension, more hospitalisations due to hypoglycaemia and a higher likelihood of patients developing costly (in all senses of the word) diabetic complications.

To advise people to take insulin without educating them about measuring the carbohydrate they need to eat in response is madness bordering on the negligent.

I urge Diabetes UK to work with the NHS and the government to ensure that every diabetic treated with insulin is given a simple framework of education, perhaps as little as a 10 minute consultation, that will help them understand the fundamental relationship between insulin doses, grams of carbohydrate and blood glucose levels.

Yours sincerely
Mike K

cc Dawn Primarolo MP Bristol South; Paul Burstow MP Minister of State for Care Services (inc Diabetes); The Editor, Balance Magazine

Update: If you reading this post has made you interested in carb counting yourself and your care team do not offer it, you might want to look at the Bournemouth (BDEC) online carb-counting course.

Update: The carb counting black hole

My pump problem and CGMS envy

I've been considering writing a post about this for weeks, well months really if I'm honest. I've kept putting it off partly because I keep finding out new things which change how I feel; and partly because what I want to write doesn't feel very current, very 'now'. It's not a view I read other people expressing. But I can put it off no longer - I just have to put something down, and if I change my view tomorrow, well you can all have a good laugh.

I don't want an insulin pump. There. I said it.

Now don't get me wrong, I don't think MDI (multiple daily injections) is a perfect system, far from it - it's just that I don't think pumping is perfect either. Swapping a set of difficulties I have come to know and understand for a completely different set that I see pumpers experiencing (or not mentioning) doesn't entirely feel like the brave new world the pump-evangelists keep telling me it is.

I do know that pumping has demonstrable benefits for many people with diabetes. I do know that pumping is the current 'new and exciting' insulin therapy. Pumping is cool. But that's not enough for me. Not yet anyway.

For those who have no idea what I'm talking about, an insulin pump is a smallish electronic device, similar in size to a mobile phone but around twice as thick. Within it there is a reservoir of insulin attached to an 'infusion set' - a length of plastic tubing (cannula) connected to a longish needle (by MDI standards) surrounded by a big sticky pad. The pump itself often has some electronic wizardry built into it to help you work out how much insulin you might need for a meal. You fill the reservoir, prime the set, insert the needle and away you go. No more troublesome injections. Insulin at the push of a button. And no more need for different types of insulin either. The 'basal' delivery is taken care of by a programmable trickle of insulin. One type of insulin is all you need.

The ability to trickle is, I think, the pump's big win. In terms of insulin delivery they are incredibly subtle devices. Injection pens tend to come in 2 unit, 1 unit or half unit increments. With a pump you can specify increments of 1/40th of a unit, depending on the model. The onboard electronics also allow you to set up very finely-tuned basal (background) insulin delivery profiles. A little more here, a little less there. Carefully balanced to match what your body needs during a 24 hour period. By contrast one or two injections of long-acting insulin a day with an allegedly (though not genuinely) flat activity profile seems preposterously crude, even to me. Going to be a little more active tomorrow? Just reduce your pump's basal profile by 5-10%, or set up a temporary basal rate. Boluses for meals are similarly flexible. The onboard calculator will suggest a dose based on your estimate of carbs in the meal against whatever insulin ratio you have set for that time of day and however much 'active' insulin you have on board already. More in the mornings... less in the evenings... fractional adjustments 1.275u:10g rather than the generous rounding up and down that I go for to make the maths easy.

Alison from diabetes blog 'Shoot Up or Put Up' makes a very good case. Her HbA1c (a test to indicate overall control) has never looked better.

So, you say, this all sounds very marvellous. Why am I not banging the table demanding one? Why, when pumps were first suggested to me by a consultant something like 5 years ago did I start down my pump-averse road? Why am I being so bloomin stubborn?

Well I'm not sure I absolutely know myself to be honest. But,

I hear of pumpers who say they would never go back to MDI.
I hear of pumpers who go back to MDI.
I hear of pumpers whose HbA1c levels are utterly transformed
I hear of pumpers whose HbA1c's stay pretty much the same
I hear people on MDI who swing crazily from high to hypo being recommended pumps
I hear people on pumps who swing crazily from high to hypo

and
I hear of pumpers whose kinked infusion set sends their levels through the roof (one teenage boy hospitalised overnight with borderline DKA, many others seeing levels I have never reached on MDI)
I hear of pumpers complain of infected infusion sites seeping yellow pus (sorry about that)
I hear of pumpers dropping their pumps and/or snagging their cannulas on door handles (ouch)
I hear of pumpers who find the sticky pads intended to hold the infusion set in position keep falling off

and
As a pumper I'd still have to estimate the carbs in each meal (and I'd get it wrong just as often)
I'd still have to make a guess as to how much I'd been more (or less) active than usual in tweaking bolus doses
I'd still be affected (or not) by heat
I'd still have changes in my basal requirements that need to be evaluated and adjusted for
I'd still have to work out if my liver was up to any fun and games, dropping in a little surprise blood sugar to keep me on my toes

In addition to all this I'd have to be attached to it. All the time. 24 hours a day.

On MDI I can leave my diabetic gubbins on the table between doses. Walk around like a normal person, well almost. Not so on a pump. The trickle of insulin needs to keep coming. And if you temporarily take it off to nip into the shower, or whatever, then you need to put in an estimated correction dose when you reconnect. With a pump all your eggs are in one basket. And you need to keep that basket with you. Which brings me to...

You have to carry it somewhere. I only ever have things in the front pockets of jeans, can't abide sitting, or leaning on anything in a back pocket. Women pumpers clip to their bras (apparently), but for me I suppose it would have to be clipped to the waist band like an 80s style pager. I have visions of a pump yoyoing around my knees as I break into a run, late for another appointment.

Night time would be even worse I suspect. I'm what you might call an 'active' sleeper, in that I roll around quite a bit (steady on there). Ellen seems to have taken after me in this respect and has been known to tie a duvet in a knot inside the cover. Quite a skill I'm sure you'd agree, but all my rolling around is not really pump-friendly. I'm not sure what I'd do with a pump overnight... gaffer-tape it to my chest maybe?

Not dropping it when you are getting changed.... Trips to the gym and getting all hot and sweaty... Swimming... Attempting to squeeze into a wetsuit for some holiday surfing... Crawling about in awkward spaces for DIY purposes... Bedroom antics...

I am told that these things are not a problem. That after a week or so you don't even think about it, but they weigh surprisingly heavily on me whenever I consider the potentially life transforming benefits of a pump. They also seem to get mentioned when people explain their return to MDI.

And then there are CGMSs.

Many, but not all pumps come with an added box of tricks. A CGMS (Continuous Glucose Monitoring System). Without one I suspect my overall control might get a little better, but not much. But I am absolutely convinced that a CGMS would make an enormous difference to my control. The system involves placing a small sensor under the skin which communicates wirelessly with a monitor (sometimes integrated into the pump itself, sometimes a separate unit). The CGMS records glucose levels every 15 minutes or so. Rather than the blood plasma used in fingerstick tests, CGMS systems are measuring the glucose level in interstitial fluid, so the results lag 10 or 15 minutes behind 'actual' blood glucose levels. Users tend to continue to use traditional meters to calibrate the CGMS and check results a few times a day. Crucially though, because the monitoring is constant, you get not only an indicative one-off level, but almost as important, you get information about whether you are stable, or rising, or falling and at what rate. You can be alerted when you hit a predefined level and make a decision on what measures to take based on how quickly things are moving and in what direction.

No more correcting for hypos that never were. No more suddenly discovering you've massively spiked after a meal and have been in the teens for hours. Alarms that alert you if your levels drop at night. More information. All the time.

And because a CGMS is wireless, you can keep the device itself wherever is convenient. Bedside table, coat pocket. There's no piece of string joining you to it and getting tangled up on things.

Both pumps and CGMS are expensive therapies. The devices themselves and their durables (infusion sets, wireless sensors) are both costly. But so is any treatment for diabetic complications you could mention. I know of a number of pumpers in the UK who benefit from a CGMS as part of their pump but no one, NO ONE, who has a CGMS as part of MDI therapy. If you are lucky you might be able to borrow one for a few days. Probably one of the old skool ones which store the results and have to be 'downloaded' at the end of your allotted time for your Diabetic team to pore over. And this is despite the fact that 2003 research suggests that a CGMS is as effective in reducing HbA1c and numbers of hypos for MDI users as for pumpers:

We found no difference in low subcutaneous glucose frequency between the 2 treatment arms, nor between MDI and continuous subcutaneous insulin infusion users.

And more recently from a 2008 study:

People of all ages - adults, teenagers, and children - who use CGM devices regularly (at least 6 days per week) can see positive results in managing their diabetes... Even people who already have their diabetes in control - meeting the recommended standards for long-term blood sugar tests - see improvements by using CGM devices

I don't know why it is that you can have 2 expensive treatment options (pump and CGMS combo) on the NHS, or just a pump, but not a CGMS on its own.

But I'm going to ask.

Basal driving me bonkers

This is ridiculous.

Perhaps I've brought it on myself with a few smug posts about feeling that I'm doing a little better lately, and how I finally seem to have wrestled Lantus into submission, but diabetic readers will be unsurprised to know that it's gone a little pear-shaped over the last few days.

Most annoyingly of all, my recent successes with Lantus have evaporated and I've been waking to early morning test results around 3.5mmol/l again. Starting the day a little low invariably has a knock-on effect for my control for the whole rest of the day for me, and I've been struggling to rediscover my recent run of good form. Diabetes is like walking a tightrope with complications on one side and hypo-induced coma on the other. Tricky enough if your balance is good to start with, but if you start out wobbly you're in for a difficult time.

So I'm basal testing again to see if I can discover the new magic numbers.

The technique I've come across goes like this:

1. Choose a day when you are not doing anything particularly strenuous and your fbg is in range
2. Take basal and any other medication as usual but miss breakfast and don't inject any bolus insulin.
3. Don't eat anything and drink only water until lunchtime and test every hour or two
4. If your basal dose is correct you should remain within 1 or 2 mmol/l of where you started
5. Repeat the test for another 2 days (they don't have to be consecutive)
6. Then move on to missing lunch, then evening meal
7. If you are really hardcore you can also test every hour or two overnight (I confess I've never quite managed this part of the process, and have always been able to convince myself that my dose must be about right, surely?)
8. If you notice a consistent rise or fall in bgs during the tests consider making (or talking to your doctor about) a modest change in your basal dose, perhaps 1 or 2 units up or down
9. Then start the testing process again
   

Not a perfect day to start the test today as fbg was 3.5, but I'm going for it anyway. I also had coffee rather than water which will also muddy the waters a bit (lactose in the milk will push bgs up a bit).

I'll let you know how it goes.

Update: Day 1 test went well despite the wobbly start. Completely solid bgs from mid-morning onwards. Now, do I sloppily move on to lunchtime? Or do it properly and complete the morning test a few more times? Hmmmmmmmmm...

Update: Lantus problems and going round in circles

And there was evening, and there was morning...

Just a quick update on the ongoing Lantus experiment... If you've popped by before you may have read that I recently changed the timing of my Lantus injection to combat fairly frequent, low-level morning hypos.

After the initial euphoria of my new-found pre-breakfast bg stability had worn off, I began to notice an unfortunate side effect of the new system. True, I was no longer waking up hypo 3 times a week, but I began to find that after breakfast my blood glucose levels would 'spike' - rising steeply and peaking way higher than I'd like.

When I'd suggested shifting my Lantus dose to the mornings to the DSN at the hospital, she had said that in her experience it merely 'moved the problem'. While this wasn't exactly true in my case (as I wasn't having consistent late afternoon hypos) it did appear that I'd simply swapped one problem for another.

My overall control has always been pretty good. A few swings here and there, but on the whole, fairly respectable HbA1c's (the test that reveals how 'normal' your blood glucose levels have been over the previous 12 weeks or so - below 7% is the guideline). One of the things I'm noticing about my renewed focus on tighter control is that you quickly move your own goalposts. I know for sure that one of the ways I've kept my HbA1c's in check is by having rather too many low-level hypos to counteract the high readings over the same period. Good control is not about constantly swinging from high to hypo, but as with all average-based assessments the HbA1c can hide the true picture.

In short, I was not happy to constantly spike after breakfast especially since I was now missing all those pesky morning hypos that would have kept up the illusion of good control in my HbA1c.

So for the last week or so I've been splitting my Lantus dose, half at about 10pm and the rest at around 7am the following morning. My reasoning was this... Lantus takes a good 3-5 hours to get going (this is why it is often recommended that you take the dose last thing at night). It also lasts around 18-26 hours, depending on the person - I think it's around 20-22 hours for me. What I think was happening with my breakfast time dose was that yesterday's had run out, and today's wasn't kicking in until mid-morning at the earliest. This meant that my breakfast bolus was having to cover basal requirements as well as whatever I was eating. By injecting half and half I now have two activity curves running out of phase so that the onset of one is covered by the activity of the other.

I have to confess that the timings of the doses are based more on convenience and the likelihood that I'll remember them than any complicated graph-based calculation of perfect timings, but for the last week or so both fbg (pre-breakfast blood glucose level) and post breakfast readings have been pretty much bang on target.

Well apart from the day I forgot to inject that is... but that's another story.

Update: Basal driving me bonkers