Showing posts with label blood-glucose. Show all posts
Showing posts with label blood-glucose. Show all posts

Posted by on Tuesday, 18 December 2018

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)

Posted by on Monday, 11 June 2018

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.

Posted by on Saturday, 30 December 2017

CGM, diabetes time travel, and lessons learned from go-karting

Image by 'aurorasognatrice' used under cc.
2017 is hurtling to a close, and despite my giddy optimism about having 'loads of time' over the festive break to do all sorts of things that I don't generally get around to, the days have passed in a blur of hopelessly guestimated carbs, fun, friends, family and alcoholic excess. Consequently I am once again hastily cobbling together a round-up of the year type post - you lucky lot.

Almost exactly 12 months ago I was placing my order for a transmitter and first box of sensors for my MM640G insulin pump. I'd trialled the system over the summer of 2015, and I have always opted for Medtronic pumps with the vague notion of possibly, some day, self-funding CGM - but this was the first time our family finances had permitted it. I'd been using Freestyle Libre sensors intermittently for a few years (which you can use sporadically without the additional £500 for a transmitter), so I was interested to see how occasional SmartGuard coverage worked out for me.

In the end 2017 turns out to have been by far my most sensor-filled year. I was invited to trial Medtronic's Guardian Connect in April, and was unexpectedly and very generously gifted some short-dated sensors by someone who was switching systems and could no longer use them.

I always try to get the maximum use out of every self-funded sensor I insert, and I am fortunate to be able to restart almost all of them for at least another 6 days while retaining good performance. This almost halves the cost - or more accurately for me, doubles the sensor coverage. I had hoped to spread 10 'stretched' sensors (approx £500-worth) across the year to give me somewhat less than 50% coverage, but in the end, have been able to use them continually for quite a number of months which has been a very interesting contrast to my usual pancreas impersonation guesswork. It's interesting to reflect on the changes I've noticed myself making to day-to-day management decisions, and how it has felt as an experience. Here are a few basics:
  • On the whole it has felt far easier to live with diabetes this year.
  • I've not done any complex analysis of BG results, but my basic monthly spreadsheet analysis (nerd alert) shows significantly better results.
  • My A1c has fallen by 7mmol/mol (0.5%) and my hypoglycaemia has dropped significantly
  • Sustained reduction in hypoglycaemia has really improved the reliability and timing of my warning signs.
  • For the most part I seem to be operating with around 80-85% of results in range (4-9mmol/L) - even over Christmas. This is ridiculous.
  • On average I've only been getting 1-2% of results below 3.9mmol/L, nocturnal hypoglycaemia has been almost completely eradicated and I am having days and sometimes weeks at a time with all but no readings below 4.0.
  • These are not results I can achieve without continuous data, not matter how hard I try.
  • Even with the benefit of Freestyle Libre these are results I find it impossible to achieve. The alarms of full CGM provide me with significant added benefit, especially for catching lows.
  • Occasionally life with CGM has been rage-inducingly frustrating, and alarms have sometimes driven me to distraction.
  • I've had a few duff sensors and made some very poor choices based on inaccurate sensor data.
  • Additionally, SmartGuard is a bit of a liability with an inaccurate or under-performing sensor, sometimes sending me into double figures with a cancelled basal (and sometimes half of a slowly-delivered bolus!) when I would have been fine if left well alone.
  • SmartGuard is amazing for me, but very often I can't resist overruling it, ending it early and/or adding some carbs. Sometime this works better, sometimes I suspect I create more problems for myself than is strictly necessary 
  • Additional data is a significant help to me day-to-day. I've come to rely on it and feel quite lost without it, but there are times when some of the subtle details of life with CGM have created their own challenges - which leads me to...
CGM and diabetes time travel
I've always been one for a thinly stretched analogy. I can't help myself. There are two coming up... You have been warned.

With absolutely no apologies for the shameless 'Christmas Dr Who' reference, I've also been thinking quite a lot this year about the diabetes time travel that you get involved in when tinkering with continuous data. I've considered this before in terms of the repeated half hours you can spend with diabetes waiting for various management decisions you have made to start working - periods of waiting which can seem interminable. With more time spent in CGM-land this year I've noticed additional time travelling shenanigans with the lag between 'sensor glucose' read via interstitial fluid and actual 'what's happening now' blood glucose information.

This was brought more keenly into focus with my brief dalliance with the faster-acting Fiasp. An insulin surrounded by feverish hype of very rapid action - which sadly for me rather failed to live up to expectations. But the promise of faster acting doses has occasionally made me feel the sluggishness of Novo-not-very-Rapid all the more keenly.

Mostly I find 'sensor lag' is barely noticeable, but with a whiff of irony, it is when my BG is on the low side and I'd really appreciate accurate information that this 'time travel' is most clearly noticed. Looking at a Libre or Enlite trace at those times, shows you what was happening something like 10 or 15 minutes ago. And any 'rapid' carbs you take to bring up those low levels, or turn-around a dip towards hypoglycaemia won't change your blood glucose for 10 or 15 minutes, and may not show on the eagerly-watched line for a further 10 or 15 minutes after that. More than enough time to double-treat, only to watch your levels climb into double figures a little while later.

In just the same way, when you have a trace to watch, there is a powerful urge to see a high-and-rising BG trace turn around. But correction doses for me are unlikely to show any noticeable effect before 60 minutes have passed (unless I add increased activity into the mix) - plus the mandatory 10-15 minutes, of course. And at each of these moments the graphed time-travel of results, and interminably upward direction of travel gives few clues as to when it is 'just about' to level, or begin to dive downwards. Threepio proudly suggests 'insulin on board' from which you might think I could make an educated guess (and sometimes I do luckily seem to drag some precious clues) but all too often I can find my IOB dwindling away to nothing, coping only with mis-guessed carbs, rather than the elevated BG I had hoped to squash. Other times I can bear it no longer and wade in with an additional dose, only to see my BG trace drop off a cliff and plunge downwards - awash with both insulin and various types of carbs. Which reminds me...

CGM and lessons learned from go-karting
I have only been go-karting three times I think. By which I mean the crash-helmeted-boiler-suited-whiff-of-2-stroke-engines style go-karting rather than the sliding-down-a-hill-in-a-fruit-box-with-pram-wheels-bolted-on style. I don't think it's an exaggeration to say that I'm absolutely terrible at it. I was reminded of my go-karting prowess when thinking about some of my... erm... more questionable diabetes decisions in response to a more frequent CGM data-feed. I suspect I am not the only one who has fallen foul of the double-dose and/or double-treat temptations - and for all the benefits of all that extra information, it is unmistakeably one of the risks.

The very first time I sat in a go kart, in a dimly lit, oily, industrial shed on the outskirts of our city, my driving style was essentially binary. The accelerator was either fully down or entirely untouched. The steering wheel locked at either edge or dead centre. Brakes were applied with sledgehammer-like gracelessness. As a result I kangarooed around the indoor circuit, making full use of the amply-supplied tyre walls and doughnuting my beleagured kart in furious circles. I proceeded at lightning speed from one collision to another and made very little effective progress around the twists and turns of the circuit.

This is pretty much the way I drive my diabetes when things are not going well. Frustrated by apparent lack of action of more reasonable measures I heftily over-correct with hugely inflated insulin doses or swigs of Lucozade. Lurching and stumbling from high to hypo and back again. Crash! Clonk! Screech! Everything becomes overblown and chaotic.

The second time I went karting was every bit as 'successful' as the first, but I had something of a lightbulb moment on the third occasion - which was at an outdoor circuit. For whatever reason, this time I adopted a more subtle approach. The accelerator was rapidly pressed full down at the start, then backed off in time for the first corner... rather than stamping the brakes I found myself making little feathered dabs. Steering was altogether more considered. Confidence grew. Speeds into tricky corners increased, a late firm braking followed by a hard turn of the wheel and full throttle at the mid-point of the turn allowed me to power-slide out of the corner. I was still making strong adjustments in some circumstances, but more often my choices were much more subtle, more measured.

This is what I see when my diabetes management is more successful. It is when I am able to make smaller adjustments that I do better. Multiple big overlapping doses and rapid-carb 'rescues' can leave me in a flat spin and going nowhere. Smaller tweaks, spaced further apart are often significantly more successful. I have found this to be a really interesting and important thing to think about when Threepio is merrily warbling away. Those alerts can seem equally frantic, but I need to pause and consider my position on the 'circuit' of my day. Can I just coast through this corner without stamping on the brakes (adding insulin) knowing that the turn of the wheel or dab on accelerator I've already made is enough, or is this the devious hairpin and do I need full-lock and firm braking before powering-on with additional carbs to make the turn.

In general terms, when I notice that I am oversteering and stamping on the brakes and accelerator of my diabetes managment, I am trying to remind myself to make a couple of slower laps and build up to speed again more gradually with more gentle adjustments.

Widening the access to continuous data?
I was delighted to be invited by Abbott to attend DxAmsterdam in July, and then in September the eagerly awaited news was released that Libre was to be placed on the NHS tariff and could theoretically be made available on prescription, subject to local CCG decision-making (and perhaos an emerging postcode lottery). Abbott's real-world data, shared in Amsterdam, backs up my own experience of access to continuous data - that the more information I have on which to base my guesswork, the better things tend to go for me.

Diabetes still has the capacity to be hugely annoying of course, but for me - more data certainly leads to better results. Continuous data is not without its challenges, and it will be vital for people living with diabetes to be given appropriate support and help in order to make best use of the information and avoid the pitfalls. Both in terms of their support from their clinic and also perhaps, those who have made the mistakes before them and can share their experiences. It will be really interesting to see what effect wider access to these technologies delivers as access to Freestyle Libre and CGM increases in the years to come.

It remains to be seen quite how much life my transmitter has left in it. They are warrantied for just 12 months. I will continue to use Enlite sensors for as long as I can, especially since my CCG seem rather reluctant to take any decisions on the finding of any kind of sensors for anyone - however great the need. I would imagine I would be very far down any list they eventually decided to draw up. After that I'm not sure if I will revert to Freestyle Libre, spring for another Guardian transmitter or take a continuous-data break.

Wishing you all a tip-top 2018. And thanks as always for reading.

Posted by on Monday, 15 May 2017

Medtronic Guardian Connect Review - iPhone CGM in the cloud

Guardian Connect on iPhone, Guardian 2 on MM640G
and Contour Next Link 2.4
As some of you may know I've been lucky enough to be wearing Medtronic's new box of CGM tricks recently, and with nearly 4 weeks' wear under my belt and a few more days to go, it seems about time to post my thoughts about this new addition to the list of CGM options.

Ground rules
As I have been reflecting on my time using the Guardian Connect, a few things have stood out to me from the start. The first is that this is now the third continuous sensor system that I have tried. My first experience was Abbott's Libre flash glucose monitor (not strictly a CGM) and later, the MiniMed 640G sensor-augmented pump system which I trialled for 9 weeks in 2015. I mention this, because I think it has a significant effect on how I have responded to the Medtronic Guardian Connect. I am now no longer comparing 'no continuous data' to 'continuous data' which is, in itself, a huge change. Essentially you can take for granted that I am enjoying all the 'usual' benefits of access to continuous data - the ability to glance at your glucose level whenever you want to; overnight basal test type traces every morning, and trend and 'direction of travel' indicators. So what you get here is more me comparing the tiny details in user experience between the various systems, rather than being swept along by the benefits of CGM itself. I'm not sure if that makes this more or less helpful for anyone reading... but there it is.

Initial bewilderment
I don't know if you know anything about the Guardian Connect as you start reading this, or any other Medtronic diabetes technology for that matter - I mean why would you? But me... I'm on the inside, and that perhaps gave me certain expectations. I first chose a Medtronic Paradigm Veo which tantalisingly offered a 'low glucose suspend' if paired with the sensors that I never quite managed to afford. When I subsequently trialled the MM640G with it's souped-up 'predictive low glucose suspend' I think it's fair to say that for me, the results were extraordinary. Finally a piece of diabetes technology was actually proactively helping me out - dodging hypos automatically while I was blissfully unaware. So when I was first invited to trial the Guardian Connect I assumed that, of course, it would integrate with Medtronic pumps, SmartGuard and all the rest... Well... it doesn't.

So... CGM on iPhone... CGM in the cloud... sounds great! But what do you mean it doesn't link with SmartGuard? - I mean, wait... what?!
What I knew from the outset, was that the Medtronic Guardian Connect was a CGM that displayed sensor glucose readings on your iPhone, which sounds cool. And that it was Medtronic's 'CGM in the cloud' solution, which has very much been the buzzy new thing to have for a year or two. But I confess it completely threw me that this new CGM would not also communicate with my pump.

A new product line that explicitly doesn't offer the market-leading benefits of other devices in the same stable, while simultaneously offering all that trendy cloud-share-ness. Medtronic giveth, and they taketh away. Of course, Medtronic are keen to point out that the Guardian Connect was always designed as a standalone CGM (Medtronic have had a standalone Guardian CGM line for as long as I can remember). They say that this technology is intended for users of other pump brands, or people on multiple daily injections (MDI). Well... maybe. But I still find myself wondering whether a company would take this sort of decision if we were not living in a global marketplace with such complex approval mechanisms and timelines in different locations.

In a way I can sort of understand it from a technical perspective - my MM640G communicates on a completely different frequency to the bluetooth on my iPhone, so a transmitter would have to be able to send information to both devices. Would that increase transmitter size? I don't know - to be honest, I'm not really sure I care. All I know was that finding out that all the Guardian Connect iPhone-displaying-cloud-sharing juiciness came at the expense of SmartGuard was a real kicker.

The disappointment was particularly sharp when I discovered that people in the US have access to MiniMed Connect, which does link a MM530G, essentially a Veo with low glucose suspend, and transmits CGM to an app on iPhone or Android. Apparently MiniMed Connect is soon promised for the MM670G too - a newer pump than mine and not available in the UK. But all things? Approved in all markets? Available in all countries? Apparently not.

CGM displayed on your iPhone? Brilliant!
Having said all that, the idea of getting your sensor glucose sent to your iPhone is very appealing. I have very limited pocket space, and having to avoid scouring my phone screen to oblivion I need to keep keys and loose change in one pocket and my phone in another. So when using a Libre, with its separate reader, I have to squish reader and phone in the same pocket, and keep the reader in a little fluffy sock to keep them apart. Yes, you are right I am *such* a nerd. In short, having to carry a separate reader is a bit of a bind and the idea that I can use something I always carry with me anyway is hugely appealing.

Users of robot, rather than fruit-based smartphones may be wondering at this point whether Guardian Connect is available for Android? Well, at the time of writing, it isn't. And unfortunately I have no idea when, or if, an Android release might be available.

CGM in the cloud
The conspicuously 'on-trend' facility of the Guardian Connect is the way that it links to your Carelink account and can use a small slice of your phone's data connectivity to seamlessly upload your CGM data in the background. This gives you the opportunity of sharing your live CGM data with, for example, a partner, family member or housemate. This facility is particularly welcomed by parents of children with diabetes, who are able to keep an eye on things while their youngsters enjoy freedom to roam. Additionally Carelink allows you to set up text alerts, which will send an emergency message to a number or set of numbers if you do not respond to a low glucose alert. A potential lifesaver.

I think it is fair to say that personally I am not keen on Medtronic's Carelink platform. Particularly in its difficult current phase which is fraught with warnings of incompatibility if you dare to use current and up-to-date software. Medtronic promise that they are looking into upgrading their aging software, but evidence of progress or timeline remains frustratingly absent, aside from the recent release of Carelink Pro reports for everyone. The upshot of this lack of updatedness is that if you attempt to log-in to Carelink via iPhone you are greeted with a warning screen. However once you clear the warning, the live CGM data shows without problem. This easy access to sharing sensor glucose information has potentially powerful safety implications and would be a major encouragement, much as it is with Dexcom's Share, and the more homespun Nightscout options.

Getting set up
Before getting up close and personal with the new CGM technology, the first order of business was to download the Medtronic Guardian app from the App Store and hook it into my Medtronic Carelink account. For me, the next phase glamorously took place at the Diabeter clinic in Rotterdam, and involved pairing the Guardian Connect transmitter via Bluetooth to my iPhone. Screens in the Guardian app walked you through the pairing process, and an internet connection was required for the set-up. Once the ground work had been done it was simply a matter of inserting the Enlite sensor and waiting around 2 hours for the sensor to start-up. The Guardian Connect uses the same Enlite sensors as the MM640G system, but uses a completely different transmitter in order to communicate with your iPhone, iPad or iPod Touch.

Calibration 
Once the sensor has warmed-up you are prompted for a fingerstick calibration, which you enter into the app by pressing the blood-droplet 'calibration marker' top-right. This then shows a green circle around it which begins to count down, handily indicating the approximate amount of time before the next calibration is due. The precise timing being shown on the calibration entry screen itself. The calibration follows the familiar Enlite pattern of 2-6-12 hours after insertion and then approximately 12 hourly after that. The Guardian Connect also has the ability to request an additional calibration if it worries that things might be drifting slightly. My habit with Medtronic CGM has been to calibrate immediately before most meals (as long as they are not expected to be horrendously spiky ones). I find that 4 calibrations a day usually keeps an Enlite tracking very well for me. The usual guidance on calibration applies here - you should choose a time where, ideally, BG is within your target range, has been stable for 30 minutes or more and is expected to remain stable for the next 30 minutes. Avoiding calibrating when the Guardian app is showing up or down arrows really helps to keep the calibrations true. One nice thing about calibrations with Guardian Connect is that they are significantly faster than when I have used Enlite sensors with my pump. Connect calibrations are done and dusted within 5 minutes, while it can take 10-15 for my pump to finish calibrating.

Once or twice over my time with the Guardian Connect I have been prompted for an additional calibration overnight, which was initially confusing as I knew I had calibrated at around 11pm so should have been OK until morning. I suspect these were down to a less than ideal calibration earlier, eg one with BG moving or above target range.

A note for non-CGM users 
It is probably worth noting at this point for anyone reading who is considering using CGM for the first time the whole 'accuracy' question. People spend endless hours debating relative accuracies with CGM devices, and stressing or worrying if fingerstick and BG results are not identical all the time. In many ways, this is largely a waste of effort because a continuous sensor and plasma-calibrated blood glucose test strip are measuring completely different things - so they will never, can never show the same results all the time. It takes a while for glucose concentration in the fluid between tissue cells (that sensors measure) to come into line with capillary blood glucose. The differences are most noticeable when blood glucose is changing rapidly, and I particularly notice the lag when waiting for sensor glucose to show recovery after a dip into hypoglycaemia where the sensor may be 10 minutes or more behind 'now'. So you are well advised to decide to be fairly relaxed about any differences you see - providing, of course, that in general the information is within usable parameters.

For interest I am intending to give a suggestion of how I have found the tracking of Enlite sensors matches with fingerstick BG by taking a week of paired calibration readings. I've not got time to do that today, but I will add it here as soon as I can. My general feeling is that tracking between Enlites and fingersticks with the Guardian Connect is really very good indeed. And I trust it pretty much all the time. It's interesting to note how my frequency of fingerstick testing has fallen away while wearing sensors. Many days only checking fingersticks before meals, before bed, and before driving.

Update: Calibration and tracking vs Contour Next Link 2.4 
As promised I am editing this post to include some pairs of results between Enlite sensors on the Guardian Connect and my fingerstick BG meter (the Contour Next Link 2.4 USB that connects to my pump). Out of interest I have also done a comparison between the 'calibration' pairs for one of the sensors I have been using with my MM640G using the Guardian 2 transmitter - just because I was curious to see if there was any difference. Essentially I have looked at all the fingerstick BGs over the official 6 day life of the sensor that I used for calibration and compared them to the sensor glucose reading at the time. I should stress that this is not very scientific, and mostly for my own interest. The data set is pretty small (29 pairs for the Guardian Connect and 26 pairs for the MM640G). For what they are worth, here they are:

Medtronic Guardian Connect / Enlite results compared to Contour Next Link BG meter
BG meterSensorAvg +/- %
(against BG meter reading)
Avg +/- mmol/L
(against BG meter reading)
Average8.4mmol/L8.3mmol/L7.8%0.6
SD2.82.55.7%0.4
Distribution of readings
Number of readings where sensor higher1138%
Number of readings where sensor lower1655%
Number of readings equal310%
Number of readings within 0.5mmol/L1345%

Medtronic MM640G / Guardian 2 / Enlite results compared to Contour Next Link BG meter
BG meterSensorAvg +/- %
(against BG meter reading)
Avg +/- mmol/L
(against BG meter reading)
Average7.2mmol/L7.2mmol/L7.7%0.6
SD1.51.15.7%0.5
Distribution of readings
Number of readings where sensor higher1246%
Number of readings where sensor lower1142%
Number of readings equal415%
Number of readings within 0.5mmol/L1350%

My feeling is that these results are pretty much exactly the same between the two systems, which is reassuring, especially given the more varied results I was having on the days with the Guardian Connect with a higher average and wider SD (range of results). The MARD of less than 8% difference is above the expected performance of these sensors - I have always thought I must have lucky 'body chemistry' or whatever it is that means the sensors work better for some people than others. Effectively, it shows me that most of the time either of these systems will give me a result somewhere around 0.2-1.0mmol/L different from a fingerstick BG measurement (with potentially larger differences if my BG is moving rapidly, obviously). Around half the time, where my BG is just pottering along, sensor glucose and BG fingerstick are going to be less than 0.5mmol/L apart. And that is a level of accuracy I find easy to trust, and extremely useful in informing my diabetes management day to day.


Inside the app - traces, alerts and arrows
As a full CGM, the Guardian Connect offers both a rolling view of sensor glucose and audible/vibrate alerts if sensor glucose is, or is predicted to be, outside of a range you set. Today's sensor values are plotted as a graph and are viewable in 3hr, 6hr, 12hr and 24hr versions which each allow you to swipe back through previous time periods. Holding a finger over the graph reveals a scrolling pop-up of the value at that time. Additionally you can open the 'Now' menu to look back through previous day's sensor data.

Current sensor glucose is displayed above the graph, along with the menu and calibration icons. Where sensor glucose is changing more rapidly single, double or triple up or down arrows appear alongside the current sensor glucose reading.

Helpfully, when the sensor is coming close to expiry, or is running short of battery, you are alerted by icons on the main screen. Alternatively, you can always view the current details by looking in the menu screen.

The Guardian app also allows you to log insulin doses, carbs, blood glucose readings, activity or to make notes. The interface for adding and viewing each of these is pleasingly slick, but unfortunately you are required to log each value on a separate screen which would make regular use of them rather tiresome so I can't really see myself manually logging much additional detail using the app. The ability to add notes to provide context to what you are doing could be very handy though.

I was really pleased at the configurability of the alerts with the Connect. You can set both high and low alerts, along with additional alerts which are triggered anything from 10 minutes to 1 hour before your hard limit is expected to be reached if current sensor glucose trajectory continues. You can also set alerts where glucose is falling or rising particularly quickly. Snooze time allows you to customise how frequently you will be reminded of an alert condition - high and rise alert reminders can be set between 5 minutes and 3 hours while low and fall alerts can be set between 5 minutes and 1 hour. This probably all sounds needlessly confusing and granular in detail, but one of the challenges with CGM is to get good usable prompts without feeling nagged all the time, which makes the ability to precisely tailor both the mixture of alerts and their nag-ability really important.

You are also able to set an optional alert as a reminder that calibration is coming close to being due (rushing out of the house with no BG meter when a calibration comes due could make sensor glucose unavailable).

Not only that, but any and all of these alerts can be silenced at once with a single press on the iPhone's 'Control Centre' - more on that a little later.

Widget and app frustrations
Enabling Guardian Connect in the Notification centre can give you access to both alerts and a sensor glucose 'widget' on your phone's Lock Screen. Inexplicably though, the widget for a mmol/L Guardian Connect displays sensor glucose in mg/dl in the Lock Screen widget. Thankfully, as an app, this *should* be relatively easy for Medtronic to fix, but it still looks a little messy. Until the fix, users will just have to fall back on the, 'divide by 10, divide by 2, add 10%' mental acrobatics - unless their 18x table is reeeeeally good. As an example... 250 divide by 10 is 25. Half of 25 is 12.5 and then add 10% which makes 250mg/dl roughly 13.7mmol/L. Inside the app, alert states are shown by use of a coloured overlay panel.

Another frustration I had with the app, for all its smooth animation and solid build, was the total lack of any data analysis. I'm not sure whether this is something Medtronic have slated to add in future releases, but it seemed to me to be a significant missed opportunity not to have some sort of 7, 14, 30, 90 day sensor data overviews and number crunching. Or better still a pinch of Ambulatory Glucose Profiling to help make sense of that avalanche of data.

Enough with the interminable detail already - tell us what it was like to actually use!
Yes, sorry about that. Where were we...

Well... it's interesting. And actually I have been rather surprised by the experience. I think the only way to get my head around it is to list it as a series of pros and cons.

Pro - Less to carry, and very unobtrusive
Not having to carry an extra, separate reader has major benefits in terms of pocket space. We are used to carrying phones. We are used to glancing at them. No one would have any idea that you were interacting with your diabetes, even if you respond to or check an alert. Because that is what people do all the time in the modern world. There are a variety of tones used by the app, which indicate different things going on even before you get the phone out of your pocket. I kinda wish they had made the high and low alert tones slightly more varied. They do step up and down, but there is only around a semitone between the beginning and end and a quarter tone in between those, which all happens very rapidly. Occasionally I have heard the tone, but been unable to work out whether it was rising or falling. Of course it's not a real problem as it's only a glance at the screen to confirm - but I would have preferred that fraction of a second heads-up especially in circumstances where I might not be able to get my phone out for a minute or two.

Con - Now your phone is something else
Using the Guardian Connect has required me to make some adjustments in the way I use my phone - because now it is also my CGM receiver. I generally have my phone on silent, but I soon found that the single 'buzz' vibration alerts were too easy to miss, so I needed to put my phone's sounds on. Remember the single control centre command I mentioned to (helpfully) silence all CGM alerts if ever you needed to? It's the iPhone's 'Do not disturb' setting, which I have had running automatically overnight for several years. This prevented alerts sounding for ovenight hypoglycaemia, so I've had to de-activate its schedule and now activate it manually if I need to be notification-free for a time.


Pro - Phone battery life still reasonable
I am used to getting decent battery life out of my iPhones. Something like 3 days from a single charge - I suspect this makes me something of a rarity. I don't have a lot of push data notifications going on, and I deliberately restrict many of the usual battery hogs like background app refresh and screen brightness. I was a little concerned that the drip feed of continual data might suck all the life out of my battery, but while Guardian Connect has added a not insignificant demand on battery life I am still getting at least a full 2 days out of a single charge.

Con - battery charging
Of course, the flip side is that if you do run out of battery, it's no longer just your Twitter feed that you are missing - its your CGM and alerts too. And if your phone needs charging during the day, for all the time it's connected to the power socket you need to stay within about 9 feet of it to receive CGM alerts. This makes overnight phone charging a good basic approach.

Pro - gap filling
There have been times when my own peculiar charge cycle has got the better of me, and I've had to leave my phone charging on the side while I leave the room (or even the house) to do whatever. The neat trick of the Guardian Connect is that it stores several hours of data in the sensor, so that when you finally reconnect app and sensor the gaps are automatically filled in and your data remains intact. You don't get the missing alerts, of course. But at least you can look back over what has been going on while you've been away from your phone.

Con - Alert volume
Most of the time, when inside, the alerts are plenty loud enough. But the world is a busy, noisy place, and all too easily when walking outside I have missed both noise and vibrate alert. As a consequence I have tended to use the Guardian Connect a little like a Libre when out and about. Making sure I check it relatively frequently and not assuming the audible alerts would be able to cut through the hubbub. Sadly there's no way of making only the Connect alerts loud and leaving all your others at a quieter level, so it's a bit 'all or nothing'. I suppose as a fallback you could set a shorter alert snooze time so that you would get more repeated reminders of missed alerts.

Conclusions
I've not run any kind of analysis of BG numbers or hypoglycaemia frequency between Libre, MM640G/Smartguard and fingerstick-only as part of this review - quite frankly if you've made it this far I think you deserve a medal! I may try to find time to take a look at that in coming weeks with the data that are now safely stored in Carelink.

There is an awful lot to like about the Medtronic Guardian Connect. Despite my initial bewilderment, as a standalone product I think it sits very well among the current market and there is much to recommend it.

Medtronic get a bit twitchy at the idea of people who are trialling their kit restarting sensors, but having self-funded the same Enlites that this system uses since January I have found that I can get 12-14 days out of those with little if any apparent loss of performance. For anyone considering self-funding, the ability to restart to extend sensor life can be a make or break factor and I have no reason to believe that the Guardian Connect would behave differently to the Enlite's I've been using with my MM640G. Having said that I may just have lucky body-chemistry as I know from other user-groups that some people struggle to get more than 6 days out of an Enlite - so as ever YDMV.

My few weeks with the Medtronic Guardian Connect have given me very solid CGM performance, brilliantly flexible and tailorable alerts and while lacking the automation of Smartguard I get the feeling that the Guardian Connect has really helped me to keep my BGs in range, with very few hypos, and hardly any highs.

I've enjoyed using the system, though for a number of reasons I don't think it's one for me long-term.  I hope you've found this review interesting, please share your thoughts below.

Disclaimer: Medtronic offered me a trial of the Guardian Connect on loan with enough sensors to last 30 days. I have not been asked to write this or any other post about it, and have tried to accurately portray my likes and dislikes of the system. If I had thought it was utter rubbish I would have said so.

Posted by on Sunday, 7 May 2017

Running 10Km with Type 1 Diabetes


It's a few years since I did any running with much regularity, but inspired by raising money for a good cause, I found myself pulling on my trainers again in preparation for today's 10Km road race in Bristol.

If you are tempted to give running a go, there's a lot to be said for a 10K, it's long enough to provide a challenge, but short enough to remain fun, and the training runs themselves are relatively short and can fit in around a busy life. With great programmes like 'couch to 5k' you can gradually build up to running a reasonable distance from a completely blank sheet of paper - and once you are able to run 5Km repeatedly, you can leap to 10Km almost without really noticing - you just keep going at the same steady pace for a while longer.

Signing up to take part in an organised event gives your training some focus, and can help to motivate you as the time before the event reduces. There are also plenty of excellent training plans with runs and rest days that gradually build you up to 10Km and beyond. Despite my apparent grumpiness in the video I had a blast today. The field thinned out really quickly, and I was able to drop into a pace I was comfortable with very easily. There's always a brilliant atmosphere at these events and the route was lined with people cheering you on, samba drummers and live bands dotted around to lift the spirits. Even without that there is something special about running in a large group, and people often find they are swept along and encouraged into a slightly faster time than they might have achieved if plodding along on their own. Not that times are important, of course - it's more about just getting out there, having fun, and taking part.

Distance running with type 1 diabetes takes a little extra thought, but is relatively straightforward once you have worked out your system (which you can do during your training runs). For most people the main challenge is the possibility of hypoglycaemia caused by increased insulin sensitivity and glucose uptake of the muscles. I try to eat a reasonable amount of time before the run is due to start, and reduce my meal bolus a little - knocking off 10 or 20% usually helps. Eating a good while before starting running means that most of the bolus has finished working before the race starts. Being on an insulin pump, I am able to reduce my basal (background insulin) to only 20% of its normal level half an hour before the run starts and increase it to just under 'normal' perhaps an 80% TBR for a few hours afterwards. Some people find they need to take extra precautions for 24 hours or more as the exercise can make their normal doses overreach their needs a little. I was lucky enough to be able to wear a CGM during my run today, which was a great help in keeping an eye on things, but I have run longer distance races before with occasional fingersticks on the way around.

An extra motivation for people in taking on these challenges is often fund-raising, and I was really happy to be able to raise a little money to support 'Love Running' help both Syrian refugee children, and people in Bristol who are struggling with addiction, poverty, homelessness, and social exclusion. My fundraising page is still open for a week or two, and if you had a few quid to spare I'd really appreciate a donation, no matter how small. Make a donation.

Even more though, I hope you are encouraged to take the plunge and try adding a little activity into your life with T1. Whether through a big organised event like a 10k or half marathon, or something lower key like a 5k Park Run. Alternatively simply running, walking, swimming, hiking, dancing, climbing, a team sport, or whatever takes your fancy. With a little extra preparation there's no reason why type 1 diabetes should stop you.

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Posted by on Friday, 5 May 2017

Video: Inserting an Enlite sensor with One-press inserter for Medtronic Guardian Connect

I am a couple of weeks in to my trial of the new Medtronic Guardian Connect and I'm busily making notes to bore you all senseless with my thoughts about it at some point over the next couple of weeks, but thought I could grab the moment yesterday to shoot a short video showing sensor insertion for Enlites with the new 'One-press' serter.

Guardian Connect is a new 'standalone' CGM from Medtronic which is primarily intended for people on multiple daily injections, or who use other brands of insulin pump (as a standalone system it does not communicate with any of their insulin pumps or integrate with their 'low glucose suspend' Smartguard technology). I'll talk a bit more about this later when I post my review - there are other options available elsewhere in the world, but for us in Europe, the Connect system does not communicate with Medtronic insulin pumps, at least not yet.

Following in the footsteps of Dexcom's G5 and Dexcom Share, one cool feature of Medtronic's Guardian Connect is that rather than using a separate handset, the CGM information is displayed on your iPhone. Guardian Connect also uploads your data automatically to the Carelink cloud in real-time, which offers the ability to share your CGM data with a partner/spouse/parent/friend/random stranger. You can also set Carelink to issue SMS text alerts to particular people if the sensor detects low glucose levels and you do not respond to the alert within a given time. This sharing of CGM data can provide a valuable safety net for people who live alone, or for parents of a child with diabetes. At the time of writing I am not aware of an Android version, so Medtronic's Guardian Connect currently requires you to have an iOS device.

Just to warn you about the video - I wear the sensors in my abdomen, so you will have to prepare yourself for copious footage of my belly. Not so much NFSW as NSFA (not suitable for anywhere).

Don't say you haven't been warned.



Like that? There are more on my Youtube Channel.

Disclaimer: Medtronic offered me a trial of the Guardian Connect on loan with enough sensors to last 30 days. I have not been asked to write this or any other post about it, and reserve the right to say that I like it if I do, and to gripe about anything that frustrates me. Tinkety tonk old fruit etc.

Posted by on Sunday, 1 January 2017

Nothing like as '2016' as it seemed

Parliament (or possibly Hogwarts?) - one of a number
of inexplicable invitations in 2016
When I was imagining writing this post, the inevitable looking back over the last 12 months, I thought it would start 'last December' but as is the way of things these days, I have missed that particuar deadline and now I have to start with the significantly more cumbersome 'in December 2015', or possibly 'a little over 12 months ago'. It's a good job you are not here for the quality of the writing - or the frequency of postings for that matter. Whatever the reason for your stumbling across these witterings I'd like to say a massive THANK YOU for reading, commenting and all the encouragement you offer though FaceTwit and all those other new-fangled Social Medias. Genuinely, sincerely - thank you.

2016 was, by many people's reckoning, a bit of a git of a year. There were some things that happened that many people would have preferred had not, choices were made that left some people feeling distinctly 'Huh?!' or occasionally 'Oh NOOOOOOOOOO!!!!' and death seemed to be stalking around picking off an extraordinarily large number of beautiful, creative and talented people to such an extent that it is really hard to remember more than a few of them without feeling slightly overwhelmed. Humanity's ability to be generally awful to each other seemed to be conspicuously in evidence and even the weather and the stability of the earth's crust itself appeared to want to get in on the act.

And yet, when I look back over things closer to home, I realise that we as a family had a pretty great year while all of that was going on. Our eldest left to study away from home, found some great housemates and is having a wonderfully creative time. Our yougest embarked on a new adventure, effectively the next stage of their life, and is exhibiting extraordinary maturity and creativity. And we added a new hairy member to our househood who ensures, as has been remarked upon, that at least once every single day, each of us breaks into a massive grin and/or hysterical laughter.

Early last December (except-that-technically-it-wasn't-because-December-finished-yesterday-so-I-missed-it-by-one-day-but-anyway-you-know-what-I-mean-because-December-2015-sounds-too-long-ago) I took up an invitation to speak at the Royal College of Physicians in Edinburgh. This was the first time I had been asked to speak to healthcare professionals and share my 'grass roots' experience of living with type 1 diabetes, and it was as rewarding as it was utterly terrifying. In January I was invited to talk about what it had been like contributing as a lay member of the Guideline Development Group for the updated NICE guidelines for type 1 diabetes in adults at Partha Kar's #talkT1 event which later gave rise to t1resources.uk. In March I received sponsorship to attend the Diabetes UK Professional Conference where I spoke about my experiene of using the Freestyle Libre glucose monitoring system and a few days later was invited by the wonderful May Ng's to speak at the Children and Young People's North West Network Education Day in Leigh. June saw me invited by Abbott to join bloggers from across Europe at DxStockholm for a hugely inspiring weekend. More invitations followed to present to parents or children with diabetes at the CYP East Midlands Network Day and to healthcare professionals at the Yorkshire and Humber CYP Diabetes Network. In the meantime a funding application was granted for a clinical trial of a new intervention to tackle problematic hypoglycaemia for which I have been asked to assist with patient involvement (much more on that later). Along with some really interesting and useful meetings as part of the Medtronic 'Bloggers and Advocates' group I was also invited to share my experiences of hypoglycaemia as part of their excellent Hypo Heroes campaign for World Diabetes Day 2016. There was also an entirely unexpected invite to a meal at the Houses of Parliament, but to be honest I have a suspicion I may have dreamed that one. I mean... what would I be doing at the Houses of Pariament?!

The growth and launch of T1resources.uk from an embyronic 'wouldn't this be a good thing' idea to actually seeing the site filling out and gaining traffic has been a particular joy of 2016 - and seems to be one that will continue to grow in value and presence during the next 12 months.

Diabetes-wise 2016 has not been without its struggles for me. While all those 'peaks' and moments of excitement were going on, sometimes it felt like I was living in a very deep and shadowy chasm, perhaps largely of my own making. But more recently (and particularly following my most recent Pump Clinic appointment where some of you wisely advised me to opt for 'painful honesty' with my team) I have felt more myself about my T1. While it is still intensely irritating at times, I feel considerably more on top of things than I have for a good long while. And improvements in BG levels? Well those too may come in time.

Looking forward it is hard to know quite what to expect from 2017.

I have made one small, but potentially quite significant decision though. For the last two years I have occasionally used Abbott's Freestyle Libre to either see me through particularly chaotic periods of blood glucose (Christmas, birthday, summer holiday... that sort of thing), or to act as an opportunity for a reset when things have drifted somewhat. All of the extra data make it slightly easier for me to separate wood from trees and to tweak basal profiles and/or meal and correction ratios.

For 2017 however, while I may still occasionally use the Libre I have decided divert some family funds and to finally invest in the transmitter and charger to allow me to occasionally use CGM with my MM640G. If I can manage to stretch sensor-life to 10 or 12 days then the ongoing sensor costs are not dissimilar to Libre and, of course, come with the added benefit of SmartGuard, which worked so well for me before. I will only know whether this level of occasional use will be of any benefit to me if I try it (research data shows that better outcomes come for those who can use for 70% of the time - which is sadly significantly outside our funding ability). The cost of the transmitter is an eye-watering £500 and it is only warrantied for 12 months' use. Nevertheless the system was so effective for me when I used it before that I am keen to see if I can replicate some of the same effect with an odd sensor every so often. And, of course, whether the CGM data will allow the same 'reset' opportunity that I currently gain from a fortnight of Libre wear every month or two. My hope is that the transmitter will continue to function beyond the 12 month warranty if I treat it gently and talk to it soothingly every so often.

Time, and subsequent blog posts here, will tell.

Posted by on Tuesday, 25 October 2016

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

Posted by on Sunday, 29 May 2016

Appointments, priorities and the importance of buy-in

Well this is a bit unexpected - but I have been going through a bit of a weird patch over the last 8 weeks or so, and even though it's not one of the posts I have been struggling to get written for some time - I have decided to leapfrog this post ahead of the others and get it written while I it is still fresh in my mind.

Some ground rules before I start - I will try to keep the moaning to a minimum. Please bear in mind throughout that I really like my clinic, and value the opinion of the DSNs, Consultants and Registrars I see there. However, with something as complex, fickle and infuriating as type 1 diabetes, there will inevitably be some occasional differences in priorities, and sometimes this can lead to what we might call less-than-fun times. I believe it is crucial that any changes suggested in a clinic get genuine buy-in from the person with diabetes. And any previous negative experience of the suggested strategies needs to be given careful consideration.

To summarise 'life with diabetes' so far - I have always preferred to run on the low side than on the high side. Oddly enough the idea of dying with my feet still attached, functioning kidneys and still being able to see, rather appeals to me. Anyone who has read these witterings before will know that I have fought long and hard to reduce my exposure to hypoglycaemia, particularly Severe Hypos, with some success - I have not experienced severe hypoglycaemia for over 5 years now I think. What lows I still have are irritating, generally short lived and in the 3s. With a more serious couple in the 2s each month. But I do have more than I'd like. And I keep tabs on how many I am having each week/month to clamp on them if I start having more. The darkest shadow on my shoulder remains hypoglycaemia at night. Perhaps twice or three times a month I might drift below 4 and (according to Libre sensors) can stay there for several hours. This is a problem for me. It is a problem that the MM640G with sensors had pretty much entirely solved, but sadly that still remains out of my reach as a therapy option.

You may recall I wrote about a less than ideal appointment last Autumn. I confess I did not arrive at that appointment in the best of moods. As you will find, this is becoming something of a regrettable habit. Following that appointment, and full of all the encouragement that 'You are going to die of cardiac arrythmia' predictions will bring, I decided to tackle my lingering hypos more aggresively, particularly the overnight ones. I took more intense precautions in many more situations than I would have 'normally' done. Unfortunately, what I observed in my logs is that those lows are perilously hard to predict. I would take precautions using all my experience and judgement only to see my levels soar up into the teens overnight. Meanwhile I was still caught off-guard by lows when I least expected them. Nights with no obvious precipitating cause saw me wake up in the 3s. I kept it up for a good two or three weeks until I had got frustrated enough to stop. The percentage of lows per month was almost unchanged but my averages and variation went up markedly. I felt worse. I felt less on top of things. I went back to my 'normal' way.

But.

Of course, now I had let the cat out of the bag. In requesting access to sensors I had flagged up my problem to my clinic - and now they were worried about me. So I was called in for a more rapid three month follow-up appointment to see how I was getting on. Delayed by a couple of Junior Doctor strikes I actually went to my follow-up appointment on 13th April. We discussed the issues I had been having and their suggestion was blindingly simple - to take less insulin. I recounted my experience of trying to tackle these very overnight lows and how elusive they had been to tie down. That my attempts had made little difference to my monthly percentage of readings below 4, but had resulted in a significantly raised BG average, greater variation in results and raised HbA1c. Their opinion was that I had plenty of wiggle room in my A1c, which was (at that appointment) 6.7% - My opinion was more that the raised A1c and no significant reduction in the issue itself was less than satisfactory.

I wondered how high my A1c would have to be to prevent hypoglycaemia altogether (which appears to be their preferred scenario). Raising it by 11mmol/mol (1% in 'old' numbers) had done nothing - so how high would I have to go 8%? 9%? Oh no!!! not that high! Nowhere near... And yet I could not get past the thought that on the days when these overnight lows happen, I appear to need very little insulin overnight - to apply that approach to the other 28 or so nights in a month would inevitably result in consistently elevated BG levels.

I was given two options - to leave things as they were, or to try a small reduction overnight to see if it would help. They were persistent. Reluctantly I agreed. I suggested that simply dropping my basal pattern down one 'notch' would do nothing on those troublesome nights - if it was going to do anything it would have to be at least two notches (0.05u/hour).

My intention was to 'do it their way' for the next 6 months, and then go back for my next review.

The first night.
The problem
But herein lies the problem. I was reluctantly agreeing. I had tried this before and it had failed. I was not expecting it to work. In fact part of me was expecting it to fail. Perhaps even wanting it to fail? This was a problem I wanted to fix - but this did not feel like the right way to go about it. And the insistence that it was fine for my levels to be higher and my A1c to go up 'a bit' was not an encouragement - it felt like a separation between our priorities. To be clear, I know why they were suggesting it to me - from the outside it is almost something I can see myself recommending to someone else on a forum. I hate having these overnight lows. I want to be able to prevent them. But not at the cost of 90% of my overnight readings. I guess I felt trapped. Like I was doing something against my better judgement.

It probably didn't help that the first night did not exactly go brilliantly. 5.3mmol/L to 12.7mmol/L, and then a dip below 4 after lunch. A tried and tested lunch that I have eaten literally hundreds of times before. But I had decided to do it their way. So I continued.

And I am glad that I did. Because the second night showed a much lower rise. And two or three days later I *may* have dodged one overnight low because rather than a small (or very significant) rise in BG overnight I actually stayed almost level and woke at 5.5mmol/L.

I wish I could leave it there, with the problem more or less solved. But unfortunately that is not how it worked out.

Owning your own targets
I have talked before about the importance of owning your own targets - whatever you decide them to be. And here I was - trying to run my diabetes someone else's way. For all the right reasons, but following a plan of action that did not feel my own. Resisting my own management instincts to try to do it someone else's way. Watching my daily averages and glucose variation rise. Still experiencing a very similar number of low-level dips under 4.

And the more days that passed, the more the weight of running my diabetes against my instincts pressed down around me. As days turned to weeks any small early victories began to be swallowed by my rising, uncorrected, daily averages.

Type 1 diabetes is a grind. Type 1 diabetes is frustrating. Daily management can involve making hundreds of small interconnected decisions. And my aim is usually to attempt to get my BG levels to approximately mid-range by 3 or 4 hours after eating. Except now, I was aiming to avoid hypoglycaemia at all costs (not actually part of the original decision, but more reflective of multiple conversations over a number of years). So I was letting high BGs run. Sometimes all day. And still the lows peppered my results. Marginally less frequently perhaps... but adding insult to injury. Frustration grew. My mood darkened.

All in the mind?
After three or four weeks I knew I was struggling. But I had decided to run things their way for six months so I gritted my teeth and tried to carry on.

This was a mistake.

Way back in my diabetes dark-ages, there was a time where I would only test a couple of times every few days. It was not unheard of for Jane to ask me to test if I was behaving in an unsually grumpy, frustrated or short-tempered way. More often than not it transpired that I was running high. I find high BGs frustrating anyway, in that they usually suggest some sort of miscalculation on my part - but it seems that there may also be some physiological association for me between high BG levels and low mood, frustration, anger, dispair and feelings of helplessness.

Six weeks after my appointment I had reached the point where I was beginning to behave more erratically in response to my elevated BGs. I was either rage bolusing (significantly over-correcting out of sheer frustration) or rage snacking (eating rapid acting carbs without insulin in response to a moderately high BG - if I was going to be high, I might as well have 'earned' it). I was noticeably more angry and frustrated - it was beginning to impact on the family. I came to a point where I had to regain some balance.

And so I have switched back to doing things 'my way'. I'm not sure how much of this story I will share when I return to clinic in 3 months or so, as I really do not think they did anything particularly wrong. This post is more a question of me facing my own demons really, and how my reluctantly handing-over some of the control I had fought so hard to wrestle back from my diabetes, resulted in a spiral downwards towards disengagement and depression.

What have I learned?
  • Owning your targets is crucial. T1D is too frustrating to try to play to someone else's rules.
  • Where I recognise there are problems to address - I need to do it with strategies I actually believe have a chance of succeeding.
  • That reducing basal insulin such that I get a slight rise overnight is not a disaster and may, very occasionally dodge a period of low BG overnight.
  • That there are useful lessons I can learn from the first two weeks of the experiment which I can try to apply to my own self-management framework.
  • That agreeing to do something in order to demonstrate that it doesn't work is a very silly idea when it comes to T1 self-management.
  • That I need to be careful about my psychological and emotional state during periods of elevated blood glucose.
  • It's your diabetes - trust your instincts.
Thanks, as ever, for reading.

    Posted by on Wednesday, 20 January 2016

    Another Non-invasive BG Meter?

    Stumbled across this yesterday. I'd heard rumours of this new non-invasive BG monitor a while back, but it looks like they are gradually creeping towards a finished product.

    It's not a continuous monitor (so can't offer trend arrows on the device or any kind of automatic alerts) but *is* measuring blood glucose values so, perhaps, might be sufficient for DVLA. Measurements look to take 10s and are made by passing radio waves through thin areas of skin such as your ear lobe, or more likely that stretchy bit between your thumb and fingers.

    Results are displayed on the device and can be blue-toothily uploaded via a smartphone/tablet app to a cloud-based software platform. The app promises to use the uploaded data "to calculate and forecast immediate trends in your blood glucose levels, allowing you to adjust your food or medication intake according to your activities or how you are feeling". Sounds promising, but a bit wishy-washy and vague in terms of what that might actually *mean*.

    The non-invasive nature means, of course, that you could monitor your BG many more times a day without burning through strips. Ideal when waiting for BGs to come up (or start dropping) and allowing some of those 'sugar surfing' techniques (is it just me whose toes curl every time I hear that phrase?). Also pretty handy for testing on-the-go in situations where fiddling with strips and lancets is impossible, much like Abbott's Libre.

    Currently in clinical trials and the website suggests it may be available for pre-order (whatever timescale that means!) at some point in 2016

    Another to go on my long list of possible 'ones to watch'.

    More details at www.gluco-wise.com/

    Disclaimer. I have no relationship with the manufacturers of this device and I've not been paid to write this post or publicise the product in any way.

    Posted by on Saturday, 12 September 2015

    64 Days with the Medtronic 640G: Ep 9 Review - the best and worst of the MM640G

    Well, this is it. The last of my posts covering my time with the Medtronic MiniMed 640G. Thank you so much for bearing with me over the last few months. Normal wittering will be resumed shortly. However, as seems to be the way of things with blockbuster franchises (HA!) I have split this last episode into two parts. Part (i) covers all the little niggles and irritations I had while using the MM640G, while part (ii) looks at the things I loved, and reviews my results including reductions (if any) in hypoglycaemia and an HbA1c I had done at the end of my time using the pump. HbA1c is the test which measures how much of the glucose in your blood stream has stuck to red blood cells. It is often used as a measure of your likelihood of developing the long term complications of diabetes.

    For those who really can't bear wading through all those minutes of video I will summarise the results below. The video gives a lot more detail though, and features a fluffy bunny. What's not to like?!

    When it comes to the things I really liked/disliked about the MM640G you will need to bear in mind that I am comparing to a MiniMed Veo. All of the really good stuff about pumps generally - precise basal patterns, advanced dual and square wave bolus options for tricky meals, ease of use, bolus calculator, temporary basal rates, precision of doses and correction factors, blah, blah, blah... are already assumed to be present and correct. Some of the things I loved about the MM640G are precisely because they fixed annoyances I found with the Veo. But more on that later. First:

    The worst of the Medtronic MiniMed 640G

    Those who have read any of my reviews before will know that I can get unreasonably irritated by the slightest things. It will come as no surprise then, that while I generally loved the MM640G both with and without sensors, there were a few things about it that drove me nuts.

    1. Pump lock
      After a few minutes the pump automatically locks and most interactions require you to play an annoying 'press the right button' game. This is no good if you are in a hurry, and is not an option that can be turned off.
    2. Change of orientation
      It's now 'portrait' not 'landscape'. As someone who wears an insulin pump on my belt this is a bit awkward.
    3. Belt clip
      As I mentioned in the first of these videos, the new belt clip is hopelessly flippy-floppy and needs a much firmer spring. The inbuilt tool for opening battery cap is cool though.
    4. No small versions
      Medtronic have now abandoned plans to produce a smaller version of the pump. All MM640Gs will now have the little sticky-up bit to accept the larger reservoirs. The smaller reservoirs can still be used, but at present, with approximately 35u/day usage, the 'how full is my reservoir' icon on my status bar is pretty much permanently red.
    5. Sensor overtape irritation
      The glue used on the sensor overtapes (and also the little patch that holds the sensor down initially) caused a red rash to appear after a couple of days of wear. Initially it was only toward the end of a sensor but in the end it began pretty much at day 2. I used an alternative dressing, but even that was pretty itchy. Weird - because I don't usually react to adhesives at all.
    6. Sensor swap delays
      From start to finish swapping a sensor takes around 3 hours to begin providing new continuous data. That's a looooooong time!
    7. Occasional sensor lag
      Mostly I found the sensor accuracy was brilliant. But sometimes, particularly if I treated a low to try to fix a below target BG reading, the sensor was a little slow in responding (perhaps 30 minutes behind reality). Additionally calibrations by BG meter do not necessarily reach up to match sensor glucose and BG fingerstick value, but often end up with some odd half-way house. If the sensor glucose value had drifted a little there were even occasions where calibration triggered an 'alert before high' which was doubly annoying.
    8. Sensor Glucose Review
      The one-day graphs which allow you to flick back through previous days' results show no indication of SmartGuard interactions or insulin doses. Makes them about 10% as useful as they could have been.
    9. Home screen without sensors
      For no apparent reason, the icons in the status bar do not align neatly when using the MM640G without sensors. There's a gap where one of the sensor icons(!) would go, which makes it look untidy and poorly considered. The enormous dotted line 'we have no BG information to show you' panel where recent meter BG readings go (when not using sensors) also irritated me more than strictly necessary. Just doesn't feel like the visual look of the home screen for most UK users, who will be using the MM640G without sensors, was given enough finesse.

    Watch the video

    The grumbles, gripes, and irritations - everyone will have their own, I'm sure.




    The best of the Medtronic MiniMed 640G

    Whether you use the MM640G with sensors or not there is a LOT to like about it. There are all sorts of little, pleasing improvements in the interface and options that make a massive difference. Add the wizardry of SmartGuard into the mix and things are taken to another level - but even without there are lots of tasty treats for non-sensor users.

    1. Setting basals and temp basals
      There are now up to five basal patterns on the MM640G, and brilliantly you can copy entire patterns from one 'slot' to another to experiment with and then switch back if you need to later. The patterns also come with helpful names to keep track of which are which: Work Day, Day Off, Sick Day, Pattern 1, Pattern 2. Which pattern is set is not marked on the home screen, but thankfully setting any of them does not cause the 'alert circle' to appear like it did on the Veo.

      Temp basals can now be set in 15 minute increments for more precision and alter up and down by 5% at a time making them much quicker and less fiddly to set.
    2. No TBR 'chime'
      Setting a Temporary Basal Rate no longer causes the pump to issue a useless wittery alert tone every hour, which means you can ACTUALLY USE THEM OVERNIGHT! In even better news - the end of a TBR is now indicated by a single beep. Brilliant!
    3. Different Alert Tones
      There are now a series of different alert tones to indicate different things. There were a few on the Veo, but so many overlapped with either 'pip-pip-pip' or 'naah-naah-naah' that I find it much easier to work out what is going on on the MM640G without having to check the pump for 'information' alerts and being alerted (ha!) to things that actually require action. The ability to increase volume has also significantly improved.
    4. No lockout during bolus delivery
      It is possible on the MM640G to do rather more things during the time while a reasonable sized bolus is being delivered - for example you can set a TBR. The Veo made you wait until the bolus had finished before allowing you to do anything (other than stop the bolus!). This meant I could group my pump interactions together and then get on with life, rather than having to wait around tutting.
    5. Screen visibility in sunlight
      Really, really good - especially compared to some other colour-screen diabetes gadgetry I have tried. Not perfect from every angle, but really easy to turn a little and see very clearly even in direct sunlight.
    6. Remote boluses from BG meter
      Not a full remote control with bolus wizard, but a really useful standby when digging your pump out from within clothing is impractical or inconvenient.
    7. Waterproof
      Now rated as IPX8 - up to 12 feet of water for up to 24 hours.
    8. SmartGuard - overnight hypoglycaemia
      Unsurprising if you have watched my Overnight Hypoglycaemia post, but SmartGuard overnight for me was a real stand-out winner. No readings at all for 9 weeks below 3.5mmol/L overnight, and hardly any below 4.0mmol/L. Some nights almost no basal insulin required, and others requiring my more 'usual' 6-7 units at night. Looking at the results it's hardly surprising I had so many problems and so much Severe Hypoglycaemia during my years on Lantus!
    9. SmartGuard - results overall
      When compared to averaged results from 10 weeks of Libre sensors (the only other 24 hour data I have) time in hypoglycaemia fell by 90% during my 9 weeks with the MiniMed 640G. At the same time my overall levels, as measured by HbA1c fell by 0.3%. And all this with less effort and very little 'alarm fatigue'.

    Watch the video

    Improvements to the pump (with and without sensors) and the all important results.



    Conclusion

    It has been a great privilege to experience the MM640G system, and for me the results were spectacularly good. The comparison with Libre data is an interesting one, particularly where hypoglycaemia is concerned. Times wearing a Libre sensor were previously my 'best ever' results-wise. The ability to spot hypos coming during the day and try to head them off (I generally scan a Libre sensor something like 30-40 times a day), plus the ability to spot low levels overnight and make hurried basal rate changes meant that I generally had fewer hypos on a Libre than I would normally. And yet when compared to these data, the MM640G system reduced my time spent in hypoglycaemia by 90%. To be clear, that means that for every 10 minutes I spent below 4.0mmol/L trying my very hardest with a Libre sensor, I would spend only one minute when using SmartGuard. That and my HbA1c dropped over the same period from 6.3% to 6.0%. 0.3% - it's not a huge margin, but those fractions are pretty tricky to shave off once you get down below 7.0 in my experience.

    My only hint of melancholy about the whole experience is, of course, the eye-watering cost of full-time sensor coverage (approx £3,500 per year inc transmitter). It's not something we as a family can afford, and full time CGM on the NHS is reserved for those who really need it most - and rightly so.

    It feels a little like being given a chance to live in a multi-million pound mansion and drive an Aston Martin for a few weeks to see how I like it. I may think it's brilliant - but the reality is that it's not really an option that is really open to me long-term.

    I have a pump clinic coming up in a week or two and will see what they say about the results - particularly my unpredictable and occasionally lengthy periods spent below 4.0 overnight. These do nothing to help my efforts to keep my Imparired Awareness of Hypoglycaemia under control. I may ask about the possibility of part-time sensor coverage. Even a few months in a year would make a massive difference (as long as the transmitter continued to function, of course).

    My Veo is nearing the end of its warranty period, so I am looking to the future. I have some thinking and some sums to do after this experience - depending on what my clinic say.

    Final verdict (with sensors and SmartGuard): 5/5
    Final verdict (without sensors): 4/5
    Final verdict (considering self-funding sensors): 4/5*

    * because of Dexcom's more 'stretchable' reputation when it comes to sensor life

    Disclaimer: I was offered a trial of the Medtronic MiniMed 640G system for 64 Days with full sensor coverage so that I could share my opinion and experience good or bad. I was not paid to write this post, and if I had thought the pump was terrible I would have written that. I was encouraged (not required) to post video blogs about my experience, but Medtronic did not have any control over what I posted.