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.

Thanks a bunch - Spare a Rose 2018

I'm sorry to break it to you folks, but things don't look very good for 'us lot' in the event of a zombie apocalypse. But in the world as we know it, where a life-saving medication has existed for nearly a century, it is horrendous to think that people, particularly children, might die for lack of insulin. But they do. For all our 21st Century self-congratulation about the ever-shrinking world and our technological marvellousness, access to healthcare remains far from universal - even in the allegedly 'developed' world. In poorer countries insulin may be all but impossible to acquire, or afford. And without insulin, we die.

It has been great to see quite a bit more attention given to the annual 'Spare a Rose' campaign from folks in the UK this year.

There is something so elegantly simple and profound about the 'Spare a Rose' concept. It takes a gesture of affection, a token of love, a symbol of intent - one which is so inherently transient and passing - how long to those roses last? A few days perhaps? And turns it into something genuinely powerful. Something almost heroic - saving the life of a sick child. The cost of a single rose equating to a month's worth of insulin.

Spare a Rose addresses so significant a need for people living with type 1 in some of the world's poorer countries. I think it's something everyone living with type 1 diabetes in the UK has considered, even if only in passing, at least once since their fateful diagnosis day. What if I lived somewhere else? What if insulin was very hard to get hold of? Or impossible to afford? There but for the grace of God...

I first came across the idea of Spare a Rose a few years back, and the campaign itself dates from 2013. A few of the great and the good of the #doc have enthusiastically supported the idea, particularly in the US where the idea began. The surge of attention in the UK this year is largely down to everyone's second-favourite irregular-blog-posting chucklefest Chris 'Grumpy Pumper' Aldred. Historically the UK's contribution to this particular charity pot has been rather on the small side, but I suspect, with your help dear reader, that things could be rather different this year.

'Spare a Rose' resonates, I think, because it focuses on a celebration of love. It takes the familiar commercial overindulgence and perhaps asks us to think about what it really means to express love, or care, or affection for others. Both those close to us, and also those we have never met. The idea is that you give one fewer rose to the special someone in your life, and donate that small saving to provide insulin and education for a child with type 1, living in some of the world's less resourced countries. Spare a rose, save a life. And it says something wonderful about people with diabetes coming together and connecting for the common good. Lots of people, giving not very much, all around the world, adding up to literally thousands of saved lives.

Something significantly more than the sum of its parts.

If you would like to save a child's life today, visit lifeforachildusa.org/sparearose and do something amazing.

If this subject has caught your attention and you'd like to know more about projects seeking to ensure global access to essential treatment for people living with type 1 diabetes I'd also suggest you look into #insulin4all which is an initiative of T1international.

Fiasp review, fun with 50:50, and the mystery of the missing insulin

I have been using NovoRapid for many of my 'pretending to be my pancreas' years. I had a brief dalliance with Humalog not long after we started writing this blog, but switched back to NovoRapid when I started with Artoo as my DSN had worries about accounts of Humalog crystallising in pump tubing.

One of the challenges with NovoRapid, as many users are keenly aware is that it's not very... well... rapid. NovoSluggish perhaps? NovoOhForGoodnessSakeGetAMoveOn!

When your blood glucose is stubbornly high and you dose a correction only to find it even higher an hour later it is very tempting to rage bolus it into submission with multiple additional units, only to find that you crash into low blood glucose hours later once they have all started acting together. I once wrote a post about speedboats and oil tankers outlining my frustrations around slow insulin action where everything else seems to act very fast indeed.

For those that don't know Fiasp (Faster Insulin Aspart) is the latest insulin from NovoNordisk. It is similar to NovoRapid, but has some additional ingredients that have improved the speed of onset. Official trial data shows a relatively modest improvement, but there has been much excitement in the DOC, and the early experiences shared seemed to suggest some people saw significant differences with faster action and a shorter duration.

I was keen to try Fiasp to see if I could do away with my reasonably lengthy pre-bolus at breakfast and lunch (taking insulin at least 30 minutes before beginning eating) and also to see if I could see improved/faster action of correction doses. This blog is my n=1 trial of 3 vials, I cannot say how Fiasp would work for you or anyone else, but this was what happened when I tried it.

But before we get started...
(jump to the Fiasp bit here if you're in a hurry, but you'll be missing out on some *sparkling* blogrambling)

The mystery of the missing insulin #1
When I spoke to my pump clinic about getting Fiasp they could not prescribe it because it was not yet on the hospital formulary. I had to get it from my GP who could use the PIP code to prescribe it directly. I planned to try it for 3-6 months to give me long enough to experiment with it and give it a decent go. I generally get 3 vials at a time when I order insulin. each u100 10ml insulin vial contains 1,000 units, which at my general Total Daily Dose of 30-35u should last me around a month each, more or less.

Except that they haven't.

Looking back, my insulin use has been pretty much as expected, but I used up those vials in 57 days not 90. And I am always careful to draw out every drop out of each vial, conscious of the huge privilege it is to live in a country where insulin is provided free for me by the NHS.

I had never realised before how much insulin prescribed to me goes unused. If I lived in the US with their absolutely horrendous price issues it would make a huge difference. Every set change for my insulin pump requires the tubing to be filled, and at the end of the site's life, that full tubing is discarded. I'm careful to only fill reservoirs with just enough insulin for their 3-day life, and have run them to all but empty more than once, but even then, there is a substantial measure of insulin left at the neck which you can't get to.

What this has showed me though, is that if planning a lengthy trip away, I would need at least a third more insulin than I might have guessed.

Oh and one more thing before we get going...

The mythical 50:50 split and other 'rules'

Immediately before switching - NovoRapid doing very well

I knew that changing the insulin I was using would most likely involve resetting a lot of things - ratios, factors and so on. So I decided (looking back this was probably not one of my brightest moments) that it would provide me with a useful opportunity to finally experiment with that mythical 50:50 split that some Healthcare Professionals seem quite keen on where exactly half your insulin is used for basal and half for meals. Along with the 500/100 'rules' that often get mentioned to me in clinic. I have always thought these 'rules' to be useful starting points - academically interesting, but no real substitute for systematic (and repeated) self-testing of basal insulin with fasting basal tests for example. Here was a chance to see how it worked for me.

So when I switched to Fiasp, I took an average of my Total Daily Dose (TDD) over the previous 30 days and split it exactly 50:50, then set a flat basal profile to spread that much insulin over the 24 hours. Apparently in most people with a functioning pancreas, the body uses half the insulin for food and half for background. Quite how they have worked this out is beyond me. And I've always thought, "Well surely, doesn't that depend on what you are eating??". But nevertheless the 50:50 thing still floats around and some HCPs raise eyebrows when your split is more 40% basal to 60% bolus as mine is.

Part of the reason why I half-thought this might be a useful experiment (apart from my own curiosity and thinly veiled desire to prove that it was nonsense and wouldn't work for me), was that I had read accounts by a few people who had tried Fiasp already that found it had a shorter action. By boosting my basal split to half of my TDD, I reasoned I might soften that out a little. Take less insulin with each meal, but still have some being fed-in continually in the background that I could dial down with a Temporary Basal Rate during exercise/activity.

Additionally I was wearing a CGM sensor during this period, and could watch what was going on, plus I had Smartguard to catch me overnight, just in case.

The first morning of my changing-absolutely-everything Fiasp trial showed a dramatic drop overnight - caught by Smartguard and low prevented, but enough to confirm my suspicions that a significant hike in overnight basal insulin would cause me problems going forward. Undeterred, and wanting to give the experiment more of a go I adjusted the pattern to shift some of the basal insulin into the daytime and keep the pattern at 50% of my TDD.

500 and 100 rules
The other half of my Great Big Reset experiment was to use the 500 and 100 'rules'. These are a suggestion of calculating your insulin:carbohydrate and correction factors using your TDD as a starting point:

1u of insulin covers: (500 / TDD) grams of carbohydrate
1u of insulin lowers BG by: (100 / TDD) mmol/L

The correction factor always works out very similar to the one I generally find works OK for me, but the meal ratio is always a bit of a surprise. More than once in clinic when the subject of hypoglycaemia has come up a calculator has been tapped and mentions made of what my ratio 'should be' according to the 500 rule - I often use 1:10 and 1:11, the 500 rule suggests 1:15. I've always been of the opinion that if my meal ratio were 50% out, I might have noticed, but this Brave New World was an opportunity to have a go and see what happened.

'500 Rule' boluses really struggling

After a couple of days I took stock. I had been experiencing a lot of high glucose alarms and had needed to dose several extra corrections to bring my levels back into range. Hilariously when I looked at the splits between basal and bolus I noticed that the extra corrections I had needed pushed me back almost exactly to 40:60 rather than 50:50. My diabetes can be extremely stubborn sometimes.

Additionally, I soon realised that the 500 'rule' was massively messing with my attempt to aim for 50:50. Even though I was using my TDD as a starting point, I simply do not eat enough carbohydrate most days for the 500 rule to generate half my TDD. I usually eat around 130-150g of carbohydrate per day. Don't get me wrong... I'm no sandal-wearing low carb evangelist. Sometimes I can eat 120g of carbs in a single meal - but on the whole, I find around 150g is all I need, and helps keep my BG a little more stable. The 500 rule seemed to assume I would be eating 250g of carbs a day. Which I can do, but carbier days are often the less predictable ones in my experience.

So I gradually began to tweak my basal profile and opted for more of a mid-point for meal ratios, and the experiment continued. I lasted around a week before I threw the towel in. I only hit the mythic 50:50 split on one or two days (about as many as I do using my own system to be honest). Most of the days with the 500-rule-ratios involved significant corrections due to rising levels, however quickly Fiasp may have been working. And more often than not these pushed my basal:bolus split back to where it normally sits.

Finally! The Fiasp part of the Fiasp Post
If you've waded through these ramblings so far (congratulations, some sort of perseverance medal is clearly in order) you will understand why I am choosing to pretty much ignore my first week's experience with Fiasp.

Looking back at that first week though, I will just briefly mention in passing that we were away on holiday and so there were a good few treats to test Fiasp's rapid action. I was also experimenting with not pre-bolusing for breakfast or lunch. Early results were promising once I had tweaked my ratios a little. Doses for other things, like white bread, ice cream, cake, beer did seem to be starting to act more rapidly, and where I'd misjudged things and was dosing for corrections they seemed to be starting to act within 25-30 minutes rather than my expected 60 minute wait with NovoRapid before I see much BG reduction.

I think it's fair to say that Fiasp had its work cut out because in the months before trying it, partly powered by the occasional CGM sensors I've been running this year, NovoRapid had been unusually cooperative. Many weeks with more than 80% of sensor readings in range and with almost no minutes below 4.0mmol/L.

Faster acting
After my slight false-start and once I had my ratios and basal back to more like where I would expect them to be I began to find my feet with Fiasp. During this period, here's what I found:

• I did still need to pre-bolus, but only about half as much. Perhaps 15-20 minutes at breakfast and 10-15 minutes at lunch. Much more than that and I risked dipping low before the carbs kicked-in.
• Corrections were acting faster, just as I hoped they would. This meant that my errors were resolved more quickly
• Meals where I would not normally need to pre-bolus and where I'd expect reasonable results from an 'all up front' approach I actually needed to delay the meal insulin. Setting all or part of it as a square wave/dual wave/combo
• Smartguard occasionally mangled these square and dual waves, cutting basal insulin and stopping the remaining bolus following a small dip in BG and just as the carbs began to hit, resulting in the dose only being delivered later on when I noticed what was happening. This was intensely frustrating.
• The insulin action did seem to be shorter than NovoRapid for me, or at least the way that Fiasp makes more of the dose available sooner meant that the tail was less pronounced and I reduced my duration of insulin action to better reflect 'insulin on board'
• Breakfast was my biggest challenge. Lower carb weekday ones (15-20g carbs) were relatively OK, but bigger weekend ones (45-50g carbs) were a nightmare. At some points in the year I can find I have to add an extra mini-bolus to account for my liver dumping glucose when I crawl out from under the duvet (even though my basal pattern always kicks-up at this time), but even that tried and tested strategy didn't keep me out of the teens after breakfast at the weekends. In the end I used a surprisingly strong bolus ratio that scaled the doses upwards where I was eating more.

Fiasp performing pretty well at 3-4 weeks in.

Finding the Fiasp sweet spot
There was definitely a point, when I'd been using Fiasp for about 3-4 weeks where I began to see distinct potential. There were still some horrendous numbers to be found, but there were some great successes too. For example, a Tapas meal out one Sunday with delicious breads, patatas bravas, beers and all sorts of incalcucables that was bolused late, in a series of guesses and to correct my earlier underestimates of carbiness where I could actively see Fiasp's faster action helping me out.

It was also at this time that my results around breakfast greatly improved, which helped a lot in improving my time-in-range.

What it made me realise, I suppose, was that after something like 15 years of using NovoRapid I had memorised a lot of 'exceptions to the rules'. Little tricks and strategies that I use, almost without thinking, to work around NR's particular activity profile and my individual BG response to different foods. When switching to Fiasp, I was needing to re-invent a lot of these, and discover a whole lot of new ones. If the switch was to become permanent, it would take time to build up this knowledge.

Things improving around breakfast time with Fiasp

Increasing resistance and the mystery of the missing insulin #2
Unfortunately my successes were fairly short-lived. I can see the Standard Deviation (how spread apart my BG results were) taking a leap upwards after about 10 days of beginning to feel I was making progress. During this phase of my Fiasp experiment my basal and bolus requirements seemed to be heading inexorably upwards once again (they had kicked upward after a couple of weeks, but I'd seen that happening to others and didn't stress about it too much). At the same time I was finding my earlier shorter pre-boluses less and less effective, and had more or less reverted to exactly the timings I would use with NovoRapid. Additionally, I no longer needed to dual or square wave those well known 'all up front' meals as I had in the first few weeks.

Even more perplexingly, rather than acting more rapidly, sometimes my corrections of high BG values seemed to have no effect at all. I would be watching a sensor trace waiting for a high or rising BG to be corrected and nothing would happen. I began to throw in 2u and 3u speculative 'turnaround' corrections to try to halt a rising BG only to see it continue to rise, and where I was expecting to have to mop-up the excess insulin with carbs later, the dose seemed largely to disappear entirely.

As an example, in the image you can see my BG rising after an early evening meal. The blue dots along the bottom represent corrections. The first, before 7pm was in response to an 'alert before high' which indicated I would be rising to 11mmol/L within 30 minutes. I gave a small correction (0.7u) which aimed to take the edge off the rising BG. Over an hour later, not only had the remainder of the meal bolus not reduced my BG, but the additional correction was not doing much either. By 8.20pm or so I was getting a little frustrated and bolused 3u planning to watch and wait -  mopping up with some tasty carbs once my BG had begun to drop. In the early days of Fiasp I would have expected even a modest correction to begin to lower BG within 30-45 minutes (unless immediately after eating), but over the next hour my BG continued to rise. The two corrections already on board almost doubling my meal dose. A further small correction at around 9.20pm did finally provide some BG lowering effect and I went to bed mid-range after a small snack. For anyone wondering about the condition of the infusion set - it returned to much more expected behaviour overnight and the following morning. But it was odd events such as this that rather cast a shadow on my Fiasp experiments. I began to opt for 3u and 2u over-corrections fairly often.

I was also increasingly aware of a stinging sensation at the infusion site. Not always, and sometimes stronger than others. But many infusion sites were noticeably tender to the touch.

Losing faith with Fiasp. Averages and SD rising.

Calling it a day
It was about this point where I decided that Fiasp was not going to work for me. I was nearing the end of the third vial of Fiasp and needed to put my repeat prescripton request in to restock. I decided to return to NovoRapid.

I am sure I could have made it work given enough time, but I was losing trust with it and finding it not altogether reliable or predictable. This was relatively manageable when I was wearing a CGM sensor to keep track of where doses were not behaving as expected, but I generally only use sensors occasionally and I really need an insulin that I can trust while I'm not able to watch it like a hawk.

Ultimately, I had wanted to try Fiasp to reduce or remove the need for pre-boluses, and to improve the speed of action of corrections. I had seen some evidence of these early on, but not for several weeks. And those positive attributes had apparently been replaced by a less than reliable action.

I am quite disappointed if I am honest. I continue to see lots of accounts of people getting on really well with Fiasp, enjoying lightning speed and seeing significantly improved post-meal numbers. I have also seen other accounts very similar to my experience though. So it seems that Fiasp may be an insulin that just does not work well for some people.

But for me - despite all its faults, NovoRapid has brought an immediate relief and return to significantly better results. Well... for the time being at least!

Tragedy, togetherness #insulin4all and WDD2015

Today is Frederick Banting's birthday and also, not quite by chance, World Diabetes Day.

I was planning to post something on the blog today, but the appalling, tragic events in Paris last night have completely taken the wind out of my sails.

It doesn't really feel the day to be marking or highlighting anything else. My heart goes out to anyone involved, however obliquely. Parisians who now live in fear as they go about their normal, everyday, uneventful lives. And also to the many hundreds of thousands of innocent people who will now live in fear of violent Islamophobic reprisals.

But life, as the say, goes on. Instead of focussing on the division, violence and horror that a tiny minority are so evidently able to inflict, I find myself trying to focus on the exact opposite.

People, on the whole, are nice.

People, generally speaking, look out for one another.

People, more often than not, want to help - even if they may not receive anything in return.

People care about each other.

Yes of course there is selfishness, self-interest and general all-round rubbishness in human experience. Yes *some* people, perhaps even quite a lot of people, are prepared to do absolutely awful things.

But not most.

Not most.

I can see this in the Diabetes Online Community all the time. People wanting to support and encourage. People wanting to help. Wanting to affirm, strengthen, build up. People wanting to understand other people's point of view. People from wildly different social, economic and cultural backgrounds wanting to improve each other's lives. People willing to give of themselves without expecting, or requiring anything back, save to be part of a bigger, wider, more connected whole.

Better together. Better. Together.

T1 International and The Pendsey Trust are an example of this - attempting to co-ordinate and bring together support for #insulin4all - tiny charities raising awareness about the lack of access to essentials (insulin, test strips, education, healthcare) that many people with type 1 diabetes face around the globe.

As difficult as it can sometimes be to manage life with type 1 diabetes in the UK, it is a complete doddle compared to countries in the world where insulin is unavailable or unaffordable. In this day and age no one should die because they cannot access the insulin they need to survive.

64 Days with the Medtronic 640G: Ep 5 Changing Infusion Set

I don't know... You wait weeks and there are no turgid video blog posts from me that you need to avoid, and then suddenly two come along within the space of a week.

For this latest episode as part of my 64 days with the MiniMed 640G, I thought I would run through the process of changing infusion set including a walkthrough of the MM640G pump screens. Don't be put off by the hefty 17 minute running time - it's a LOT quicker to do when you aren't waffling on and explaining things as you go.

For what they are worth, I've included some of the little hints and tips I've picked up over the last few years which seem to reduce the number of bubbles I get in the reservior/tubing (everyone's second favourite insulin pump nuisance). This isn't advice you understand, and check with your healthcare providers blah blah blah, but personally I seem to get very few problems with bubbles these days and if any of it gives you some ideas to experiment with for your own set changes then great (but on your own head be it).

The only thing I did not explain very clearly in the video is the importance of using room-temperature insulin. Bizzarely, oxygen is more soluble in colder liquids, so if you fill perfectly and bubble-free with insulin straight from the fridge you can find that you get bubbles emerging from the insulin inside the sealed reservior, after filling, as the insulin warms up. Not helpful.

Anyhow - here it is. Enjoy. And do leave any comments, questions or set-changing tips of your own for me below.

Thanks for watching!


Glutton for punishment? Why not subscribe to my YouTube channel?

For an alternative video detailing a set change using Medtronic QuickSets check out this great post by Dave Sowerby.

World Diabetes Day 2014 - #insulin4all, food and meeja mentions

The (diabetes) wisdom of Homer - with apologies to Matt Groening

Yesterday was the anniversary of Frederick Banting's birthday (one of the clever chaps behind the discovery of insulin) and, not coincidentally, World Diabetes Day. Here are a few things that caught my eye:

#insulin4all
Perhaps one of the most moving initiatives on the day came out of a collaboration between teeny tiny diabetes charity The Pendsey Trust and t1international.com who are seeking to break down the barriers across the world that prevent so many people from accessing insulin. Or which mean that they have to weigh life-saving medication against food or shelter for their families. The YouTube video clip explains it far more eloquently.

You can add your support on the insulin4all tumblr blog too.


Enjoy Food
Diabetes UK chose World Diabetes Day to launch their 'Enjoy Food' campaign. It's good to see an 'everything in moderation' and 'nothing is off limits' feel to this campaign - especially from a type 1 perspective. I confess I have a tricky relationship with some of the dietary advice that DUK have dished out over the years, particularly for people with type 2 diabetes. It is a great relief to see them backing off from their 'all carbs, all the time' mantra more recently and actively stating that all carbohydrate becomes glucose in the blood. Bizzarely DUK still seem to be stridently anti-fat despite much recent research (including this) and even the British Heart Foundation recently confessing that there was no longer any real evidence to support its historic 'avoid fat/go for polyunsaturated' guidance. But hey... one thing at a time.


tweet tweet
There was quite a lot of twitter action again this year including the amazing 24-hour #wddchat2014 which saw global DOC communities uniting again and passing the tweet-chat baton around the world. Pressures of work meant I was not able to take part much this year - but somehow it's good to know it's going on around you. Huge thanks to Cherise (@DiabetesSocMed) for organising it all.

Fame at last?
I was chuffed to be contacted by the lovely Amy Fleming at the Guardian newspaper a week or two back who was planning a story about the Abbott Freestyle Libre and was interested in including some of my ramblings on the subject. All I can say is that the picture desk must have been rather frantic (or all at the pub) when the story hit the website as they went with my ugly mug by way of illustration. Even more surprisingly the article is factually pretty spot on, and even carefully differentiates the type of diabetes in question. Given the number of horrendous diabetes gaffes in the media I have a sneaking suspicion that Amy Fleming might actually have diabetes herself, or have someone very close to her that does - either that or she's just very, very good at the ole journalism lark. You can read the article here.

That 'biohub' thinghy...

I don't think this caused quite such a stir over here as it did with people living with type 1 diabetes in the states, but if you'd like to know a bit more about the spongey thing that might make insulin on demand in realtime and the hoo hah it caused you should probably read this post:

http://typicaltype1.com/2013/03/11/the-biohub-brouhaha-of-2013-an-animated-retrospective/

It will make you smile.

5-10 years eh? Sounds quite familiar.

DBlog Week Day 4 : Things we'd like to see

Today's DBlog Week topic is all about fantasy future D gadgetry. If we could have any dream diabetes device, what would it be?

I had a crazy notion to write a post about a futuristic BG meter that was actually accurate to within 5% of a lab reading 100% of the time. Or maybe a CGM that was actually affordable for anyone that wanted one. I even considered writing about a pump that was constructed with such inexplicable ingenuity that it *didn't* have to bleep and warble about a temporary basal rate Every. Single. Hour. Which might be useful for anyone that ever needed to set a TBR to run overnight and values their sleep. But no. Let's at least keep this within the bounds of the possible.

I'm not even going to write about the cure. That's only a mere ten years away after all (well it always has been, ever since I was diagnosed in 1991, so I don't see why we should start changing that now).

What I would like to see (and I suspect some white-coated boffin in a gleaming laboratory is already working on this very thing) is an intelligent insulin. I can remember having conversations with people when I was first diagnosed who would say things like, 'Ooooh, I could never inject myself!'.

Like that was the hard part.

Let's face it after the first three or four hundred - the injections are a doddle. All the other stuff. The adjustment. The guessing games. The carb counting. The unexpected 'helping hand' given by the liver. The moving goalposts. The messy, confusing, illogical variability of it all. That's what I want rid of. Heck, I don't even mind carrying on with a fingerstick BG test every so often just to make sure things are toddling along OK.

So in my dream-world of the future, I just need to inject a whack of IntelligentInsulin^{TM pending} every day (it could be every few days, but I don't want to push it).

Once absorbed the IntelligentInsulin just sloshes around in my bloodstream bound-up and inert. Ready and waiting. I chance upon a sweet and sickly cupcake. As soon as I start eating it, and my BG begins to rise the IntelligentInsulin senses the change in my levels and immediately begins to work (none of this '4 hour profile' nonsense). Once the carbs are dealt with, IntelligentInsulin stops and waits again. Very tiny amounts of it working every so often to counter glucose released from my liver keeping my levels rock steady. If my BG falls below 4.5 (81), IntelligentInsulin stops working entirely and allows my liver a little room to top things up into a safe zone. When I eat a massive fat-laden uber-carb pizza-with-extra-dough-balls-and-garlic-bread IntelligentInsulin effortlessly matches the stop-start absorption of the food. Even when I have an entire cream-filled Pavlova meringue for dessert. Which is a neat trick since I have a horrendous cold at the time. And have not been to the gym for 2 weeks.

All I have to do to manage my diabetes is keep my level of circulating IntelligentInsulin topped up with an occasional injection, and take an occasional BG test to check things are OK. And that is all.

Welcome to the future ladies and gentlemen.

The diabetic half hour

Just having to rattle this one down. I've got several other 'proper' posts jostling in my head, but this one has just emerged and rudely pushed its way to the front...

Is it just me or do many other diabetics seem to spend an interminable amout of time just waiting around? I'm not talking those charming hours spent in the cosy nooks of a doctor's surgery or the peace and tranquility of a clinic waiting room - I just mean the day to day business of pretending to be a pancreas. The waits I am talking about always seem to last about 'another half an hour'.

Wake up, test BG, bolus, pour coffee. Look at watch and think, "Better wait about half an hour for that insulin to realise it's meant to be doing something useful before I take the rash action of eating something."

Lunchtime, test BG, bolus, see above...

48 minutes after lunch. Hmmmm I wonder if I guessed that dollop of whatever right. Bit early yet, better wait about half an hour before testing to allow for the dose/food to get going.

Oops, got that wrong. 9.something... If I walk to the shops that'll sort that out. Back from the shops. Wonder if that worked. Better leave it about half an hour for that sort of low-level exercise to have any effect I suppose.

Evening meal (inexplicably spared the need for a pre-meal half hour wait). Look at watch, 56 minutes since finishing. Bit early yet. Better leave it about half an hour before seeing how things are going.

Bedtime. Dual wave finished some time ago but there are still a fair few units (and some takeaway) doing their thing. Better leave it a while before turning in. There... was that long enough? Ah no... that was only 27 minutes, better leave it about another half an hour.

I'm sure if I had all those back and added them together I'd have about twice as many hours in the day! And half an hour is not quite enough time to do any one thing, but slightly too long to do nothing. It's a time period where it's easy to get distracted and forget what you were supposed to be doing (waiting to eat after bolusing is a nightmare for this).

And a lot can happen in half an hour, diabetically speaking. You can be waiting to give it long enough to check and all the while your BGs can be rocketing skyward. 30 minutes of rapid climb meaning it'll take even longer to resolve.

Case in point yesterday: I had tested to find a couple of low level dips in the morning where I'd underestimated the level of activity and not sufficiently reduced basal. In the afternoon I feared the same was happening again, but rather than testing I just topped up here and there with a sip of Lucozade or a fruit pastille. Before evening meal I was an entirely self-inflicted 12.2 (220). Not ideal. In an attempt to speed the return to better levels I left Jane washing up (sorry about that) and went for a brisk 40 minute walk. Once back I waited for things to settle (about half an hour, of course) but then found that rather than improving things I was up to a wince-inducing 24.8 (446). Frustratingly I rarely feel any symptoms with quick rises into kidney-frying territory so I had waited none-the-wiser while my liver had decided that my BG was far too high to be walking about and what I really needed was an additional surge of glucose. Great. Thanks for that.

On the other hand I had changed set just before evening meal so maybe it was nothing to do with the walk and it was just a set failure?

A full 5 unit correction administered there was nothing to do but wait and see if thigs got better or worse. Ready yet? Nope, not long enough. Another half hour should do it... (I always seem at least twice as eager for a correction to start working as it is able to start reducing BGs).

Thankfully I did come down overnight, and very smoothly too. Artoo earning back my trust with a 6.5 (117) at 2am, followed by another 6.5 (117) on waking this morning.

Yet another day when I would *love* the immediacy of feedback that a Continuous Glucose Monitor offers. Ah well, without a lottery-win (unlikely as we don't do it) that isn't going to happen with the current pricing structure.

Diabetes bashing on Channel 4 News

UK diabetes forums erupted in indignation yesterday following a report on Channel 4 news.

Channel 4 News - Diabetes: the insulin investigation
While on the subject of health, I should mention that later in the programme we have a completely sensational film about diabetes and the high cost of a new form of insulin.
Diabetes already costs the NHS £9bn a year - our investigation has discovered that these new insulins - now used by millions in the UK - only offer minor benefits compared to older versions. Meanwhile they are costing us tens of millions extra annually.

The film exposes what some see as an attempt by big pharmaceuticals to transfer the world's diabetes sufferers onto an insulin which has only modest advantages for most patients - but is very profitable for the companies who make it.

I didn't see the report when it aired but thanks to the wonder of the interweb I was able to watch it today. This put me in the strange position of beginning to work out what I felt about it before I'd seen it.

Initially I wasn't sure what everyone was so upset about. But then I watched it.

The real shame is that the actual story is quite interesting. I didn't realise, for example, that there were more type 2's using insulin than type 1's (at least this is what was inferred in the report). I suppose it is possible since the number of type 2's is so much higher that even the relatively small percentage of those who use insulin therapy do indeed outnumber the total number of type 1's (who all use insulin), but it was still a surprise.

For type 2's using insulin the report suggests that many (most?) patients would get very similar results using older human insulin formulations as they do with the newer (and significantly more expensive) analogues. It was not made clear how this had been researched. If you watched very carefully, and if you already know a great deal about the subject matter you might just about have been able to glean that none of this is the fault, or choice of the patients. That it is the Big Pharma reps who stroll around hopitals wooing DSNs and diabetes clinics so that analogues become the default choice. That those specialist nurses are often far less familiar with the older formulations and do not feel confident in putting patients on them. There's no point in keeping patients, particularly diabetics, on older ineffective therapies because the short-term savings will be far outweighed by the cost in treating the diabetic complications that will follow. Similarly there is no need to prescribe insulins which cost 2 or 3 times as much if a more cost effective medicine provides the same therapeutic benefit. Which variety of insulin a patient uses should be a decided by clinical need, not some lazy default choice and certainly not purely on the encouragement of a Big Pharma rep!

Sadly, I suspect almost no one understood this from the report. Especially if they have heard or read pretty much anything else about diabetes in the last few years in the media. Because there is a very real, very big problem with the way matters concerning diabetes is reported in this country. In my experience the thrust of pretty much every article is in one of two directions.

1. Diabetes is very, very expensive to treat and it is costing the NHS (and that means you dear reader) an absolute arm and a leg in taxes.
2. Diabetes is caused by eating too much sugar and/or fat. People who get it are fat, lazy and only have themselves to blame. Now see point 1.
   

Occasionally the journos might throw in some other snippet about it being 'cured' by eating your own earwax or something similarly ludicrous, but by and large it seems to be either 1 or 2 or a combination of the two. And the more exaggerated and terrible they can make the story the better.

So it is into this terribly mis-informed world that yesterday's news report lands. Did they take the opportunity to explain some of the complexities of the condition? No. Did they carefully explain which of the many types of diabetes were affected? Not really. The focus was unnecessary cost and unless you know different already you would assume that the problem lies with every diabetic. Indeed many outraged comments from diabetics suggest that even those 'in the know' were mightily confused.

It didn't help that they began with a headline figure of the £9 billion. That is a whole lot of NHS money, and it goes on treating diabetes in the UK. Having got the really juicy, scarily big number out there they then threw about lots of other costs and figures. £300 million a year on insulin, and later £250 million potential saving. What? You could save almost the entire cost? Ah no! Sorry, you weren't listening carefully... the £250 million was over 5 years. So that's £50 million a year. Still not to be sniffed at, but sensationalist journalism and quite misleading.

Part of the problem, of course is that nothing about diabetes is easy.

The media don't understand it. They don't feel the need to understand it. It's a Big Problem and rather than take the trouble to research it properly they can stick with what they know (see points 1 and 2 above).

It seems to me that diabetes is an umbrella term for perhaps dozens of different disorders - Type 1, LADA, MODY, Gestational, Double and of course Type 2 the media's favourite Big Target. Some types quite are closely related, others very, very different and I've read that Type 2 is really just another umbrella term for a very large number of sub-types. The reporting, though, only ever talks about 'diabetes' as if it were some sort of indivisible whole. There was a passing mention of type 2 last night (about halfway through) but no explanation as to what that meant, or how and when a person with type 2 might be put on insulin. There was no clear explanation given about when the more expensive insulins are particularly effective and well worth the extra cost. Again and again different talking heads just repeated that 'the old stuff is just as good, and it's so much cheaper!'. Particularly misleading was the repeated blurry white-room shot (sourced from an image library by the look of it) with several young twentysomethings injecting into their abdomens. A group of people who seemed pretty much your archetypal type 1's to me, illustrating a report about insulin therapy in type 2.

The tragedy is that, from my type 1 perspective there seems to be a significant problem with the way type 2 diabetes is treated in the UK. Many of the type 2's in question will now be using insulin because their diabetes has progressed through treatment by diet and exercise, then oral medications and finally to insulin. They will probably have been refused prescriptions for blood glucose strips by their GP (even though the NICE guidelines mentioned in the report support SMBG - Self Monitoring of Blood Glucose in motivated individuals). Many will have been told they don't need to test, an annual HbA1c is enough. Without the ability to monitor what happens to their blood glucose levels when they follow the dietary advice they are given they will not have known how catastrophic it can be. In it's most extreme form "eat lots of starchy carbs with every meal" I have heard accounts from type 2's who actually began to eat more carbohydrate after diagnosis believing it will keep them healthy. More carbohydrate = higher blood glucose = more damage and excess glucose stored as fat.

Now if the £50 million a year saving was reinvested in test strips for type 2's. And proper education was put in place to help individuals establish the level and types of carbohydrate that their bodies can tolerate (because every diabetic is different), perhaps the 'inevitable' progression towards insulin, for some at least would be slowed. Maybe for others it would be reversed. I have heard of many type 2 diabetics who have moderated their carbohydrate intake by self-funded SMBG and have been able to reduce and then stop oral meds altogether. And at least one who appears to have recovered normal pancreatic function almost entirely.

Now that really would save the NHS some cash.

Curious? You can watch the report here.