Sometimes diabetes feels more like an uphill struggle than others. I'm in one of those periods at the moment. The months are rolling by with a constant sense of dissatisfaction with my BG levels. Strategies are being tried, seeming to succeed then seeming not to again. Then the situation turns on a sixpence and I'm having to reverse all the dose changes I have been carefully making - chasing lows not highs, vice-versa, or more usually both at the same time. It's relentless.
I'm not quite sure where I read it but I saw something online a little while ago that talked about why it is that you are more likely to be made unhappy by the little niggly things than really big important events. It seems our brain deals with life with a degree of caution and because all of the mental and physiological engines that kick in when Something Big happens are hard work and take up valuable resources it does not dish out these responses easily. So that if you were involved in some sort of nasty accident you might be able to think coolly and rationally about what to do, and be flooded with hormone responses so that you can work through the process of fight or flight; of escape, manage, repair or recovery with your happiness relatively intact. The small things, however, just slide under the radar and you don't get that helping hand.
Living with a long-term illness is often in the 'under the radar' territory. Sometimes for me, living with type 1 diabetes seems to offer little more than a gentle, relentless sense of failure. Occasionally this is not exactly helped at clinic appointments. How often have you been told to "Just keep doing exactly what you are doing - your levels are perfect!". No, me neither.
Living with type 1 diabetes is an ebb and a flow. Sometimes you discover a new technique, or make a big change like switching insulins or moving onto a pump and there will be a period of readjustment and relearning where you feel you are actively working toward something. It might be that you decide to tackle a long-standing challenge: exercise... overnight levels... restarting regular testing. These can provide short-term goals which allow you to measure progress, focus on achieving whatever it is. Even if you don't succeed straight away there can be a sense of positive feedback. Struggling through and getting it done.
But then there are the ebb tides.
I'm now starting my fourth year on an insulin pump. In the first year I quickly discovered I had no idea what I was doing. I managed to get the basics in place relatively quickly, but I think it was the best part of a whole year before I really felt I was making progress. The second year was more polishing and refining. Working out dual/combo and extended/square bolus options for 'tricky' meals (and them working out again, and then again). Improving results around exercise, and beer (all the important things you understand). In the summer of 2013 I had a run of absolutely extraordinary months of BG results. The best I have ever seen.
Then things got a bit wobblier. But I didn't worry - only to be expected after all. Then wobblier still. Ah well - maybe next month... And so it has gone on.
I wish I could have those levels back. But as much as I have tried to replicate the techniques, food choices, dose adjustments, basal pattern resets and everything else in the months since, certainly over the last 6 months it has just been one set of slightly disappointing results after another. Part of me wishes I had never had that glimpse of what was possible at all. Not had them to compare against. I have had brief periods of decent results since (notably with the Abbott Freestyle Libre), but all too quickly things have strayed again.
So here's the thing. If you are struggling a bit at the moment, and feel like it's all gone to pot - it is NOT your fault.
Keep chipping away at it. Keep doing what you can. You are doing an amazing job, and if the tried and trusted techniques you have been using are not working so well right now it is not YOU that moved the goalposts. You are doing your bit. It's your diabetes that needs to pull its finger out and start behaving again. If all else fails go back to basics and start again, but keep going.
So I wish you all more 'flow' this Christmas, and a lot less 'ebb'. All through the festive period and into the New Year I wish for you (and me!) to be happier with the results we are achieving. To lose any sense of disappointment or self-judgement where things go a little off-track and unlimited patience to gently steer things back toward the middle ground again.
Monday, 8 December 2014
Saturday, 15 November 2014
World Diabetes Day 2014 - #insulin4all, food and meeja mentions
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| The (diabetes) wisdom of Homer - with apologies to Matt Groening |
Perhaps one of the most moving initiatives on the day came out of a collaboration between teeny tiny diabetes charity The Pendsey Trust and t1international.com who are seeking to break down the barriers across the world that prevent so many people from accessing insulin. Or which mean that they have to weigh life-saving medication against food or shelter for their families. The YouTube video clip explains it far more eloquently.
You can add your support on the insulin4all tumblr blog too.
Enjoy Food
Diabetes UK chose World Diabetes Day to launch their 'Enjoy Food' campaign. It's good to see an 'everything in moderation' and 'nothing is off limits' feel to this campaign - especially from a type 1 perspective. I confess I have a tricky relationship with some of the dietary advice that DUK have dished out over the years, particularly for people with type 2 diabetes. It is a great relief to see them backing off from their 'all carbs, all the time' mantra more recently and actively stating that all carbohydrate becomes glucose in the blood. Bizzarely DUK still seem to be stridently anti-fat despite much recent research (including this) and even the British Heart Foundation recently confessing that there was no longer any real evidence to support its historic 'avoid fat/go for polyunsaturated' guidance. But hey... one thing at a time.
tweet tweet
There was quite a lot of twitter action again this year including the amazing 24-hour #wddchat2014 which saw global DOC communities uniting again and passing the tweet-chat baton around the world. Pressures of work meant I was not able to take part much this year - but somehow it's good to know it's going on around you. Huge thanks to Cherise (@DiabetesSocMed) for organising it all.
I was chuffed to be contacted by the lovely Amy Fleming at the Guardian newspaper a week or two back who was planning a story about the Abbott Freestyle Libre and was interested in including some of my ramblings on the subject. All I can say is that the picture desk must have been rather frantic (or all at the pub) when the story hit the website as they went with my ugly mug by way of illustration. Even more surprisingly the article is factually pretty spot on, and even carefully differentiates the type of diabetes in question. Given the number of horrendous diabetes gaffes in the media I have a sneaking suspicion that Amy Fleming might actually have diabetes herself, or have someone very close to her that does - either that or she's just very, very good at the ole journalism lark. You can read the article here.
Sunday, 26 October 2014
Abbott Freestyle Libre results vs BG meter - Review part 2
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| Last day of 2nd sensor. Complete with crazy-flat overnight graph. |
It is probably worth pointing out at the outset that the Libre WILL NOT give you identical readings to your BG meter all the time. It just won't. They are not even measuring the same things. If that's what you want the Libre to do, you can pretty much stop looking, because it's not going to happen - not with the Libre and not with *any* technology that measures glucose in interstitial fluid and then converts that into an estimate of plasma glucose values (so all current CGM options). More on that later. But first - what is the Abbott Freestyle Libre like to use?
I found the Libre to be extremely comfortable and unobtrusive to wear and both sensors stayed firmly stuck for the full 14 days. I was almost never aware of the sensor being there, with the exception of one or two times when I leant on it or absent mindedly scratched near it (having forgotten it was there). I did deliberately try to remember it when towelling off after showering to make sure I didn't accidentally dislodge it, but apart from that I barely gave it a second thought. There was very little in the way of itchiness for me and at the end of 14 days the sensor removed to reveal, well... nothing very much. Insertion of the second sensor was as painless as the first. I have seen some comment online where people have found that sensors came loose after just a few days, but that certainly didn't happen to me. With infusion sets I have found that the adhesive seems to need 12-24 hours to get up to full strength. I suspect it is the same for the Libre sensors. If it gets loosened early on you may need to over-tape it with Opsite Flexifix, Tegaderm or something similar. There's not a lot of 'edge' on the sensors and I can see the possibility of the sensor getting 'levered off' if knocked in just slightly the wrong direction.
I think this picture sums up my experience of living with the Libre for 28 days. Since I started attempting to *actively* manage my blood glucose levels four or five years ago I spend quite a lot of time wondering what is going on between my BG checks. I have never really known how often this happened until now - but the Libre released me from any monitoring constraints. So there you go. An average (average!) of 31 checks a day. Something like once every 30 minutes during waking hours. I had expected that my frequency would drop off after the initial excitement, but I remained fairly consistent through the full life of the sensors - checking more frequently when levels were changing more rapidly and leaving hours between checks at times in the day where things are generally more stable. The inconvenience and discomfort of 'traditional' punctured-finger-and-strip-fiddling monitoring means I would never check this often via a BG meter, but for 28 days whenever I wondered what my levels were, I found out. It is easy to underestimate how much of a transformation this is. Any time. Every time. All the time. I could know what my levels were *and* what they had been over the last 8 hours. There was no longer any reason not to look. No 'avoiding' the numbers (whatever they might be!) in between my 'normal' testing routine. Rather than feeling swamped and judged by data I felt completely liberated.
Basal test every day
In my previous post I mentioned how amazing it was to suddenly be able to see what had happened overnight every morning. Overnight basal tests are - as everyone who has undertaken them will know - a real chore. Waking every couple of hours to check blood glucose via fingerstick is a very effective management technique - but it's no fun. But look at what happened when I had 28 consecutive basal tests - the result is at the very top of this post. I couldn't help but tinker with my overnight basal profile gradually moving it from a bit wobbly, to ridiculously level (at least for a short while!). Seeing the patterns every day meant it was easy to spot the general trends and ignore the one-offs. And I made alterations to the 'shape' of my overnight pattern that I would *not* have made without those data.
New technique
After I had been living with the Libre for around 7 days I noticed that I had added a whole new technique to my management armoury. The preventative TBR (temporary basal rate). I've regularly used them since I started with Artoo to cover activity and other things, but this was slightly different. Because of the constant availability of data and the trend arrow that accompanies each check, I found myself setting short sharp TBRs - perhaps 50% for 30 minutes or an hour - to head off an impending dip in glucose levels. I was slightly surprised to realise that the 'level' trend arrow on the Libre doesn't actually mean level as such. It just means not rising/falling fast or very fast. In the first week on sensors I ignored a lowish level because of the 'flat' arrow only to dip below 4.0mmol/L an hour or so later. By using preventative TBRs for flat or more accurately reading-flat-but-slightly-falling readings that were just 'a bit near the edge' I managed to avoid several low level hypos and without bouncing up into double figures. Similarly, micro-boluses of small fractions of units when levels were high-ish (but not yet out of range) allowed me to be bolder in preventing BG drift. WIN!
I really like the simple, clear overview screens on the Libre. They might be a bit simplistic for some, but by dividing the day into four chunks and averaging 7, 14, 30 and 90 days of results in those sections I found it very easy to spot patterns and filter out the ebb and flow of 'diabetes randomness'. I particularly liked the 'Daily Patterns' graph which only appears after 5 days of results are stored and offers an average of daily results along with a 90th and 10th centile shaded area (it's a simplified version of the Ambulatory Glucose Profile graph - see image). It becomes very easy to see which periods in the day are providing the most challenges. You get a similar view (but with many more options, and helpful traffic lights) when you connect the Libre to your PC (or Mac - hooorah!). The Libre software niftily allows you to create smart PDF reports recording all sorts of averages, graphs, low glucose events and mealtime patterns which can really help to understand what has been going on. Additionally any mealtime notes and/or carbs and other details that you may have chosen to record on the libre are transferred for review too. If you have a particular penchant for number crunching you can also download up to 90 days results and details as a 'tab separated' txt file ideal for import into your spreadsheet package of choice. Look for the 'File' menu at the top of the screen, and choose 'Export Data'.
The end result of my 28 days? I had some of my BEST results all year. Lower post-meal spikes, fewer lows, fewer highs. Not bad Abbott! Thank you very much Freestyle Libre.
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| Ready to insert second Libre sensor |
Well... this is all very well you say. But if the results the Libre is providing are complete garbage, then it doesn't matter a hoot how nifty the downloaded PDF reports might be.
So how reliable were the results?
It's a good question. And not necessarily an easy one.
As I suggested earlier the Libre is reading glucose levels in interstitial fluid (via factory calibrated sensors) and then interpreting those through an algorithm to present values intended to reflect plasma glucose levels. That's a whole lot of steps in between what the Libre reads and the results you receive. And much as I realise a lot of work will have gone into ensuring that those results will be mostly OK for most people most of the time - clearly it is likely or at least possible that some variation will occur. Not least because the glucose values in interstitial fluid will 'lag' behind blood glucose values (typically 10-15 minutes, though the Libre aims for 5). Things are complicated further by the +/-20% variability which is allowed between BG fingerstick strips (though again these days meters tend to perform more like +/-5% or 10% most of the time).
What matters more to me is not whether results are identical all the time - it is more whether the results I get are useful. Whether any variation is modest enough that the readings, trends and analysis help me manage my diabetes better.
In order to understand what I was getting from the Libre I tested both sensors against my standard BG fingerstick testing routine. This is usually between 6 and 10 fingerstick tests a day, including premeal and post-meal tests as well as those around driving, exercise and activity. Whenever I took a BG fingerstick test on my 'normal' meter (the Contour Next Link USB that works with my pump) I cross-checked with the Libre. At the end of each sensor I then downloaded all the data and compared it on a spreadsheet to see what (if any) differences there had been. I do not for a minute pretend that this is a scrupulously scientific test - or that the results here might apply to anyone else. I took these comparisons purely for my own interest, and share them here in case others find them useful.
Here's a summary table from the first sensor - there were 94 pairs of results (BG meter vs Libre) over the 14 days:
Sensor 1
| BG meter | Libre | Avg +/- % (against BG meter reading) | Avg +/- mmol/L (against BG meter reading) | |
|---|---|---|---|---|
| Average | 7.8mmol/L | 7.4mmol/L | 10.1% | 0.7 |
| SD | 2.8 | 3.0 | 8.9% | 0.6 |
| Distribution of readings | ||||
| Number of readings where Libre higher | 18 | 19% | ||
| Number of readings where Libre lower | 70 | 75% | ||
| Number of readings equal | 6 | 6% | ||
| Number of readings within 0.5mmol/L | 43 | 46% | ||
I don't know about you - but that looks pretty darned good to me. Yes, in amongst that there were some readings which were substantially different. A handful of times around 40% different from the BG meter - to put that into context one was a 4.4mmol/L that read as a 6.1mmol/L - one needs watching the other doesn't. There were also results where the Libre read hypo, but my BG meter confirmed I was in the 5's.
But the vast majority of the data feed is well within usable limits for me. The SD line gives a useful estimate of the range of most of the results. So from an average of 0.7mmol/L difference the most of the results were somewhere between 0.1 and 1.3mmol/L out.
You will notice that in most cases (but not always) the Libre was reading lower than my BG meter - with the result that overall the average of all results for the Libre comes out at 0.4mmol/L lower than my Contour Next Link, but with a slightly wider range (SD of 3.0 vs 2.8). Amazingly though, almost half the time the Libre was reading within 0.5mmol/L of my BG meter - and don't forget that at least some of the differences in readings could be down to the 5-10 minute 'lag' between BGs and interstitial glucose - especially if BGs were moving fairly rapidly at the time.
What I think this means for me in practical terms is that if I was running off results from the Libre more or less full time, with only a few cross-checked results where BG was moving rapidly or if things 'didn't feel right' I would most likely run a little higher most of the time. This would probably do wonders for my avoidance of hypos, but I suppose it may also have a small knock-on effect on my HbA1c.
But.
Isn't there always a 'but'?!
Things get a little more interesting when I switched to Sensor 2. As soon as that sensor started reading the graph 'jumped' down the screen. If the first sensor had tended to read a little lower, this sensor was taking that to new levels. Now Abbott do suggest that the Libre sensors may not read quite so accurately on day 1, but that days 2-14 should be relatively steady. Even on the second day though readings on the Libre were consistently 2mmol/L or more lower. And since there is no calibration option there was absolutely nothing I could do about it.
Here are the results for the first 5 days of that sensor:
Sensor 2 - days 1-5
| BG meter | Libre | Avg +/- % (against BG meter reading) | Avg +/- mmol/L (against BG meter reading) | |
|---|---|---|---|---|
| Average | 7.1mmol/L | 5.4mmol/L | 26.2% | 1.7 |
| SD | 2.3 | 2.3 | 13.7% | 0.8 |
| Distribution of readings | ||||
| Number of readings where Libre higher | 1 | 2% | ||
| Number of readings where Libre lower | 43 | 98% | ||
| Number of readings equal | 0 | 0% | ||
| Number of readings 1.5mmol/L or more out | 26 | 59% | ||
You can see the difference in performance for yourself - over twice as far out. Suddenly almost 60% of the time the readings were 1.5mmol/l or more different and almost always lower. I had a few overnight traces that looked as it I'd been on the verge of a hypoglycaemic coma all night - when in reality I'd just been bobbling along in the low 5's (I know because I panicked and checked). On several occasions the Libre just reported 'LO' - with (allegedly) a level too low for it to record.
After several days of 'waiting to see' I contacted the lovely folks at the Abbott helpline who ran through a few checks to make sure I had the sensor in the right place and generally could tell my Libre from my elbow. I had been given a handful of Freestyle Optium Neo strips with my pack of goodies and the helpline person suggested I tried cross-checking against the Libre's inbuilt BG meter rather than some other technology (interestingly these strips also read a smidge lower than my ususal meter). As it turns out the reading on that occasion was pretty close (typical!) so I left it at that and wished I'd called them earlier.
The plot thickens
A couple of days later I had a call from Fiona who I'd met at the Libre pre-launch meeting called to say that a software glitch had been discovered (and fixed) in some of the very early sensors which was causing some interruptions in data and other concerns. I related the issues I'd been having with the second sensor and while they didn't seem to exactly fit with the software glitch described, Fiona offered to replace the second sensor.
In the meantime, and certainly into the second week, the second sensor seemed to be settling down considerably and behaving much more like the first. Here are the results averaged from days 6 to 14:
Sensor 2 - days 6 to 14
| BG meter | Libre | Avg +/- % (against BG meter reading) | Avg +/- mmol/L (against BG meter reading) | |
|---|---|---|---|---|
| Average | 6.9mmol/L | 6.5mmol/L | 11.7% | 0.8 |
| SD | 2.2 | 2.1 | 10.2% | 0.6 |
| Distribution of readings | ||||
| Number of readings where Libre higher | 15 | 27% | ||
| Number of readings where Libre lower | 38 | 69% | ||
| Number of readings equal | 2 | 4% | ||
| Number of readings within 0.5mmol/L | 21 | 38% | ||
Not exactly back to the performance of the first sensor, but pretty darned close. Of course it did take those 5 days to settle. And if I'd been stumping up hard-earned cash for that sensor I suspect I might have been quite miffed that data from 36% of the life of the sensor was fairly useless to me.
I would have expected that a relatively consistent error would have still yielded useful 'trend' data - but in reality I found it very difficult to detach myself from the uneasy feeling that 'red' (hypo) results gave. However much I knew, or suspected, that my *actual* BG level was 1.5-2.5 points higher it was impossible for me to use the information in the same way when the margin of error was that great.
So in the end I am left with one spare sensor yet to use (which I plan to put into action around Christmas time) and just a very slight sense of unease as to what future sensor(s) might bring. When it worked at the 10% MARD that Abbott promise in the marketing literature I found it an incredibly powerful tool. If it were available on prescription and performed consistently like that I would be banging the table and asking to swap my (fairly generous) fingerstick allowance for Libre sensors - topping up with as many strips as I needed on top of that out of my own pocket.
But.
If other sensors only perform to the accuracy of the first 5 days of Sensor 2 then it's a whole different ball game. I wonder if Abbott may come to regret their decision to go for factory calibration. From a user's perspective I have already seen several posts from people who would find it very useful to have a 'manual override' setting where you could offset Libre readings which are consistently out to bring them more in line with our own fingersticks.
All in all I love the Libre and I am really hoping that future sensors live up to overall positive experience I have had so far.
Now that the online shop has opened I'd be interested to hear your experiences if you have used the Libre yourself.
Final verdict: 4/5.
Update: Freestyle Libre now licensed for use in under-18s
Saturday, 11 October 2014
15 Checks, Diabetes Audits and Prawns
I got as far as skimming Report 1 'Care Processes and Treatment Targets' (check out that horrendous BG testing technique on the cover folks... right into the nerve-ending-packed softness of the fingertip! Use the sides people use the sides) before one of the stats just jumped out and hit me between the eyes.
Way less than half of all Type 1s are getting the routine healthcare checks they should.
40%. Forty. Percent.
My daughter reliably informs me that in GCSE terms that comes out as an 'E'.
The actual figure is quoted as 41.3% and it has been falling since 2010. That's almost a quarter of a million people living with type 1 diabetes who are missing even the most basic annual checks to help them keep on track.
When it comes to actively supporting people to manage their condition effectively by offering them some sort of structured education course the stats are even more eyewatering. Less that 4% of people being offered a place on a course. A measly 1% actually make it onto the courses. There's a lengthy rant right there... but that will have to wait for another day.
Diabetes UK lists 15 healthcare essentials that people with diabetes should get each year:
- Get your HbA1c measured at least once a year
- Have your blood pressure measured and recorded at least once a year
- Have your blood fats (such as cholesterol) measured every year
- Have your eyes screened for signs of retinopathy every year*
- Have your feet checked
- Have your kidney function monitored annually
- Have your urine tested for protein each year
- Have your weight checked
- Get support if you are a smoker
- Receive care planning to meet your individual needs
- Attend an education course to help you understand and manage your diabetes
- Receive care from a specialist paediatric team if you are a child or young person
- Receive high quality care if admitted to hospital
- Get information and specialist care if you are planning to have a baby
- See specialist diabetes healthcare professionals to help you manage your diabetes
- Get emotional and psychological support
* eye screening is now handled separately and bizarrely is no longer included in the NDA
The ones in bold are the checks that are covered by the NDA. Eight or nine routine measures to check that nothing nasty is lurking, and to be able to do something about it if things are going awry. These checks are not about passing or failing - they are about protecting us.
So what is going on?
Is it just people not showing up?
Is it that the appointments are not available at convenient times?
Is it that people simply do not *know* that these simple routine checks are so very important?
Is it a lack of resources?
Overstretched NHS?
Un-engaged individuals?
Are clinics not helping patients?
Or are patients not helping themselves?
My guess is that it is *all* of those things.
I wrote once before about the exponential rise in the number of appointments that were involved in my 'annual review' and the situation is much the same. Decentralised care may work well as a buzz word, but patients have ended up with 4 or 5 appointments instead of 1, which makes the whole process much more of a faff.
But here's the harsh truth.
Faff or not - if you are living with type 1 diabetes you need to do whatever you can to make sure that you get those checks.
They are not for the benefit of the doctors. They are not for the purposes of making someone's spreadsheet look snazzier. They are for YOU. We live in a world where people struggle to get access to any insulin at all - let alone the particular type and/or colour of pen that they prefer. The very least we can do is turn up for (free!) appointments designed to help us to make it through life with our feet on and our eyes working.
It absolutely appalls me that the figures are what they are. And the people most likely to suffer as a result are not the clinics or doctors, but the very people who are not getting checked.
Yes I'm sure some clinics could help with more flexible appointment times. Some employers might need to be reminded that under the DDA (or whatever it is called this week) they need to make 'reasonable adjustments' to support employees with diabetes in keeping these kind of routine healthcare appointments.
But at the end of the day we have to find ways of attending.
Prawns
Perhaps it would be easier if diabetes was a bit more like prawns.
After 25-odd years I am very glad that diabetes is often a relatively slow-moving adversary. But perhaps part of the problem with all those thousands of appointments from the patient perspective is that diabetes is not enough like prawns.
Perhaps it's not prawns for you. Maybe it's peanuts. Or yoghurt. Or fresh ravioli with ricotta.
When I was in my teens I had an absolutely delicious pub meal out while on holiday. I chose a local speciality of prawns in their shells. They were fabulous. On the way home in the car I began to feel a little uneasy. I used to suffer a little with motion-sickness so put it down to that. I still felt a bit odd and over-full at bedtime. But then... we had eaten rather a lot. I woke with a start in the early hours and knew instantly that things were not right. Not right at all. Somehow I managed to stumble, in the dark, with excruciating urgency to the tiny the bathroom where I remained until the following morning in a wretched, heaving heap.
I still struggle to look at a prawn.
The trouble is there is no such immediate come-back for a missed appointment here or there. Eating a big ole serving of 'not enough time at the moment' prawns in 'missed appointment' sauce doesn't bring me out in a sweat just thinking about it. But the results of missing those checks are potentially even more catastrophic.
80% of the NHS budget that is spent on diabetes goes on treating complications. We owe it to ourselves to do what we can to change that statistic. To beat diabetes one day at a time. To keep ourselves well.
Making sure we get all our routine healthcare checks is a tiny step in the right direction.
Monday, 15 September 2014
Abbott Freestyle Libre review - BG monitoring goes all flash
What on earth are you on about?
In the unlikely event that you have never heard of the Libre, or Flash monitoring, here's a brief overview: It's not quite a CGM. It's not quite a Blood Glucose monitor.
Too brief? Oh, OK... here's a bit more detail: The Abbott Freestyle Libre is a new kind of blood glucose monitoring technology that sits somewhere between existing CGM options and traditional SMBG (fingerstick) monitors. It measures interstitial glucose levels using what Matt (Abbott's techical bod) described as 'wired enzyme technology' and Fiona (communications lead) referred to as 'special sauce'. If you've not looked into CGM before, interstitial glucose is not quite the same as blood glucose. It is measured in the fluid that surrounds the cells in tissue rather than from the blood itself. Typically these levels lag slightly behind BG by up to 10-15 minutes, but Abbott are using an algorithm to adjust readings which they claim reduces this lag to 5 minutes or less on the Libre. The measurement is performed with a tiny, flexible filament inserted under the skin and attached to a small, flat, circular sensor, roughly the size of a £2 coin. Abbott recommends that the sensor is worn on the back of the upper arm which seems to give optimum results and is less likely to be knocked off by doorframes. If you are writing a blog post, you will also notice that this location is virtually un-photographable one-handed - see below. The Libre's sensor measures glucose levels once every minute and stores 8 hour's worth of data. One of the main differences between the Libre and traditional CGM is that the data are not sent via transmitter/receiver continually. To access the information you simply wave the reader (or is it 'flash'? or perhaps 'swipe'?) over the sensor and you will be given a glucose concentration reading taken at that moment along with a graph of data from the previous 8 hours. Data points on the graph are created every 15 minutes averaged from the readings taken at 1 minute intervals. You also get the 'trend arrows' which will be familiar to CGM users and give an indication of which direction, and how fast glucose concentrations are changing. The near-field communication works anywhere between 1cm and 4cm and will happily ready through clothing, even as much as a skiing jacket they said. I've already smiled to myself as I walked down a street and checked my levels by swiping my reader over the arm over my coat.
I was hugely impressed with how easy it was to insert the sensor. It was also absolutely painless, significantly less 'stabby' than a set insertion for Artoo. Everyone around the table inserted their sensors at the same time, and noone seemed to feel a thing. The sensor came in two parts that needed to be pushed together which seemed to 'prime' the self-serter. Then you chose the back-of-arm location you fancied and applied gentle pressure to the composite gizmo which gave a reassuring click. Interestingly Abbott mentioned that an awful lot of care, attention and engineering boffinry had gone into the seemingly simple process. Including the 'click' which happens only as the inserting spring/needle withdraws. As a result you don't tense up on insertion, because by the time you hear the click - it's all over. Dave (@sowerbee) did ask whether much of the resulting plastic was recyclable, but it seems that almost none of it is - to keep the process as simple, reliable and precise as possible the idea of a reusable inserter seems to have been dropped quite early on. Long term Libre users will probably also need to get a bigger sharps bin - much like the self-serting Mio sets for the Veo, most of the plastic leftovers need to head for incineration. Once you have inserted the sensor the handset begins a 60 minute countdown before the first reading is available. The sensors are being described by Abbott as 'factory calibrated'. While traditional CGM sensors have required occasional BG/fingerstick calibration throughout their life, Libre sensors are manufactured in such a way that this is not necessary. I did ask what would happen if you had forked out your own hard-earned for a sensor only to find that it was stubbornly and continually miles out from your BG monitor and it was suggested that this would be a 'contact customer services' moment. I got the impression that if you could demonstrate that a sensor was massively misbehaving through no fault of your own they may well send a replacement.
Sensor life is 14 days.
From what I can tell there is no way to extend or restart sensors. Each is electronically paired to the handset and begins to count down 14 days from the initial 60 minute 'Start New Sensor' countdown. Smart cookie Chris (@grumpy_pumper) asked what might happen if your reader developed a fault at some inconvenient time - say 5.45pm on the Thursday before Easter. It would be days before a replacement receiver could be sent, so even if the new reader could be paired with the old sensor (and thinking about it now, I'm not even sure it could) several days of 'sensor life' would be lost. Without promising anything concrete, again Abbott seemed to suggest that they would try to behave fairly. Certainly in a market where they must anticipate a significant number of customers will be self-funding they are aware of the need to be seen to be fair if any problems occur. Abbott's research data suggest that sensor accuracy is likely to be slightly further out from BG meter readings during the first 24 hours after insertion, and then more accurate through days 2-14. Early days for me, but this certainly seems to have been my pattern with the first sensor. It is remaining very comfortable after the first few days. I'm currently on day 3 and on the whole I would not know it was there. If I had my insertion time again I might attempt to make sure it was just higher up my arm than my t-shirt sleeve line, but the sensor is very discreet and if anything just looks like a nicotine patch to everyone else so it's not particularly problematic if it is on show. It certainly doesn't scream 'medical device'.
The reader looks very like a normal BG monitor. It has a single button and then uses a decently responsive touch screen to navigate between various functions, displays and data handling options. Nice clear colour screen too. It was really easy and straightforward to set up and is very intuitive to use. No real need to go digging around in the handbook so far. The reader stores 90 days of data, and provided that you swipe your arm at least 3 times a day at the right moments you get a full 24 hour picture of changes in glucose levels. So far I have been swiping with such frantic, gleeful regularity that I can't actually tell you what happens to graphs where you've run over the 8 hour sensor storage limit, but I suspect you would just see a gap. Along with the 8-hour graph that you can see each time you swipe you can also dig back through a logbook of recent swipes, which you may have tagged with references to insulin, food, medication, exercise etc or view daily graphs 24-hours to a screen or check a variety of analytical screens.
The handset will also function as both a standard blood glucose monitor or blood ketone monitor (using the appropriate Freestyle Optium strips). Somewhat inevitably, the Abbott bumpf suggests that you check your BG level with a fingerstick meter if your levels are changing rapidly (where the potential difference due to lag between interstitial readings and blood glucose readings could be more marked) or if the result on the Libre doesn't match how you are feeling. It's nice to know then, that with a few strips and a fingerpricker in your pocket the Libre reader gives you access to fingerstick checks without the need to carry a whole extra bag of kit. On the whole though, the marketing claim is that you could use results from the Libre in place of almost all your normal fingerstick tests. I'm really interested to see whether I would have the confidence to do this so I'm currently testing at my usual SMBG schedule alongside Libre swipes to see what sort of differences I find. Those of us with more than a few years T1 mileage will already be aware that BG meters themselves are not exactly the most consistent performers, meter-to-meter or even strip-to-strip on the same meter.
The reader can also function as a bolus wizard in a similar way to the Insulinx or Accu-Chek Expert, though you need the support of a healthcare professional to get this set up and access this functionality. Like most meters the reader has an operating temperature range of 10-45C so while you can apparently scan through a ski jacket, you would probably need to keep the reader toasty in an inside pocket to avoid it grumbling about being a bit chilly. Battery-wise the sensors are unpowered and the reader is recharged via USB. A full charge is expected to last around 7 days of normal use.
Alarming
As has been mentioned, one of the main differences between the Freestyle Libre and conventional CGM is that the data is not pushed by transmitter to the receiver. This means that the Libre cannot alert you with beeping/buzzing noises if your levels are soaring or crashing. This may be a significant concern for some, particularly when it comes to night-time, but part of me is quite glad. I always had a sneaking concern over how I would respond to a CGM repeatedly wittering and warbling to remind me that I'd made an almighty hash of estimating yet another buffet meal and that my glucose levels were still stubbornly stuck in orbit. The fact that the checking on the Libre is always initiated by me and can occur as often as I want it to is, if anything, something of a relief.
The handset offers a number of nifty, inbuilt analytical functions which can really help you to get your head around this avalanche of new data. I think I'm going to leave a detailed description of these for a separate post as I suspect many of you are losing the will to live by now. Briefly though, you can view results for 7, 14 30 and 90 days for Average Glucose, Time in Target, number of Low Glucose Events (where levels have stayed below 3.9mmol/L for over 15 minutes) or view a Daily Patterns graph, provided you have more than 5 days of glucose data stored. You can also export data via USB cable to be compiled into PDF reports and which can use something intriguingly called AGP (ambulatory glucose profiling). More on that later when I've got more data stored, but it looks really interesting. Helpfully several of the views display results grouped/averaged by time period so, for example, you can easily spot which time of day I've been having most fun with in the past 3 days.
What does it cost?
Abbott are offering a Starter Pack for £133.29 which includes a reader and two sensors. Otherwise the reader (on its own) costs £48.29 and sensors £48.29 each. These prices are ex-VAT so people would need to fill in the paperwork to get their VAT exemption on medical grounds. At those prices a full year's sensor coverage runs to just over £1,250 which is certainly not cheap, but when comparing with existing CGM options it is probably worth bearing in mind the significantly greater cost of handsets/receivers and transmitters for those options. Especially where transmitters are only guaranteed to last 6 months.
Freestyle Libre sensors/receivers will be available to purchase from Abbott's online shop from the end of September/beginning of October 2014 and once you have a receiver you could choose to buy sensors to cover as much or as little of the year as your budget allowed.
What has it been like so far?
In a word, amazing.
I have never had access to any kind of continuous data before, so I guess it was always going to be an eye opener, but I have been really impressed with the similarity between my standard fingerstick readings and results on the Libre. In a follow-up post once this first sensor has run its course I intend to do a little compare-and-contrast number crunching of the results, but already I am wondering what it might be like to more or less 'fly solo' with the Libre for the second sensor and only cross-check with SMBG if things felt wrong.
For the first time ever I have a full picture of what has been going on overnight every single morning. And if I wake up blearily overnight I am FAR more likely to swipe the Libre for an instant check than I am to get up, go downstairs and test. Not only that... but swiping the Libre does not involve turning any lights on or faffuing about with strips and finger-squeezing so there is far less chance of disturbing Jane in the rare event that my BG meter happened to be upstairs. I've already caught one sneaky overnight low that I am 100% sure I would have simply ignored/not checked via SMBG. Much comment has been made about the Libre for under 18s. Currently it is only licensed/available for adults but it was made very clear on Friday that Abbott are leaping through the regulatory hoops for a paediatric license as fast as they can. The phrases used were 'actively pursuing' and 'great need'. Sadly Abbott cannot predict the timeline, but certainly gave the impression that this was something they are already working towards as a priority. I can imagine that swipe-the-lump-under-the-duvet monitoring would hugely appeal to parents of children with diabetes who choose to test during the nighttime.
One of the other things I have already noticed is that the Libre makes glucose monitoring so effortless that I am inclined to check more frequently rather than less. Certainly in these early 'novelty' days. Part of this, I know is my own foolishness. I have been carefully logging and recording my BG levels, food, exercise and all manner of other details for several years now. It was one of the changes that made a massive difference to my own management and understanding of how my diabetes behaves and really helps me spot patterns and fix things. I made an agreement with myself early on that I would stick to a regular testing schedule and add in extras if things needed checking, but (importantly) that I would log every BG check I made to ensure I wasn't kidding myself by only writing down the good ones. Perhaps it's just me, but as noble as that set-up is I still find that there are occasions where I suspect I might be a tiny bit higher or lower than I'd like but don't want to mess up a good week's worth of results with another red flag so I'm tempted to make a small correction on instinct and hope to solve an imagined problem by the time I next test. This can be particularly the case if I'm having a week where I've had frustrating red flags peppering my results because results are 0.1 mmol/L past the cut-off rather than being real, proper, decent mess-ups. Yes it is silly. I know it's silly. But I do it anyway. And sometimes I end up treating a hypo-that-never-was and sending myself sky high in the process. Jane says it's because I am too much of a perfectionist. Too competitive with myself. And she's right. Again.
But with the Libre I am released from this - at least in part. If I want to check how a correction is going I don't need to wait until I think I'll be out of red flag territory. The curve on the graph will be there whether I check or not, so I might as well actually know. This, for me I think is going to be something of a Big Thing. Less double guessing and more data-driven responses. I may never play Uncertainty Tennis again while I have a sensor in my arm.
I am very interested to see how things progress over the next few weeks and will transfer some results into Excel (manually unfortunately as there is no direct .csv export from the Libre software) to try to understand how close or otherwise the results have been between fingerstick SMBG and Freestyle Libre. Unsurprisingly though, the trend arrows and graphs are already winning me over.
Does it replace fingersticks? My first few days certainly look really promising. Abbott themselves concede that there will always be at least some continuing requirement for good old fashioned punctured fingers. I'll write an update in a few more days with some of my own n=1 observations about numbers.
 |
| Left-right: Me, Dave, Jen, Laura, Chris and Sue |
Aside from meeting the fab folks from Abbott and PR gurus WeberShandwick who laid on a really interesting and engaging event, one of the very best parts of the morning for me was getting the chance to meet face to face with some amazing folks from the #DOC. Jen (@missjengrieves), Laura (@ninjabetic1), Sue (@desangsue), Dave (@sowerbee) and Chris (@grumpy_pumper) are every bit as lovely as you would imagine. I look forward to reading their thoughts on the Libre later on.
Try these other posts too:
Laura (@ninjabetic1): FreeStyle Libre - Flash Glucose Technology
Laura (@ninjabetic1): FreeStyle Libre downloaded data
Jen (@missjengrieves): Freestyle Libre Review – a gamechanger for diabetes management?
Dave (@sowerbee): New Kit! - Freestyle Libre Review: Part 1
Dave (@sowerbee): Libre FGM v Enlite
Sue (@desangsue): New Freestyle Libre Sensor System
UPDATE: Abbott Freestyle Libre vs BG meter
Disclaimer. Abbott kindly paid my train fare, treated me to breakfast and allowed me a trial 'starter pack' of the Freestyle Libre which I am allowed to keep. They encouraged me writing a blog post about my experience, but said they would have been quite happy if I hadn't bothered. They certainly didn't insist that I only said nice things - if at this point I'd thought the product was rubbish I would have said so. I've not been paid to write this post or publicise the product in any way.
Thursday, 14 August 2014
Half unit Lantus insulin pen free on prescription - at last!
About bloomin time!
I had heard about this some months ago, but then promptly forgot about it.
In April 2014 Sanofi launched the JuniorStar, a 1-30u insulin pen that can be used with Lantus (glargine) insulin and delivers doses in 0.5u increments. Woooo hooooo!
During my least years on MDI, wrestling Lantus into submission was more or less a full-time hobby. My basal requirement changes frequently in response to a wide range of factors (differences in general activity levels, warmer/cooler weather, or more frequently... just because it feels like it). On pump these tweaks are easier to manange, but more than once on Lantus I would seem to find myself in a position where a change of a whole unit up or down was just a bit too much, and I would have to settle for a Hobson's choice dose. It was particularly frustrating because of the 'some units are more equal than others' weirdness that I frequently see when my basal insulin dose is just a little bit out. A unit too much or too little of Lantus over 24 hours could leave me scoffing a massive stack of carbs to stave off relentless lows, or chasing high BGs with units and units of extra rapid-acting insulin corrections.
Diabetes is biology, not maths - and we can't always expect the numbers involved to behave in a predictable, logical way. This will be news to none of you.
So HURRAH to the fine French pharma folks for finally stepping up to the plate and launching a 0.5u pen. Mysteriously though Sanofi are yet another pharma company to market a half unit pen with a 'Junior' mindset (NovoNordisk did the same with the NovoPen Echo). It is as if only children could possibly find a use for half-unit increments. I can only hope that adult patients will not have difficulty* in accessing this potentially very useful addition to their Diabetes Gubbins stockpile.
EDIT: *Due to the ridiculous immediacy of the flow of information in the Twit-o-sphere, having posted this just a few minutes ago someone has already pointed out that the JuniorStar can be obtained directly from Sanofi, without the need to jump through tortuous prescription hoops and bothering your surgery/clinic. Simply contact the Sanofi helpline. Thanks to @davidcragg for the tip :)
I had heard about this some months ago, but then promptly forgot about it.
In April 2014 Sanofi launched the JuniorStar, a 1-30u insulin pen that can be used with Lantus (glargine) insulin and delivers doses in 0.5u increments. Woooo hooooo!
During my least years on MDI, wrestling Lantus into submission was more or less a full-time hobby. My basal requirement changes frequently in response to a wide range of factors (differences in general activity levels, warmer/cooler weather, or more frequently... just because it feels like it). On pump these tweaks are easier to manange, but more than once on Lantus I would seem to find myself in a position where a change of a whole unit up or down was just a bit too much, and I would have to settle for a Hobson's choice dose. It was particularly frustrating because of the 'some units are more equal than others' weirdness that I frequently see when my basal insulin dose is just a little bit out. A unit too much or too little of Lantus over 24 hours could leave me scoffing a massive stack of carbs to stave off relentless lows, or chasing high BGs with units and units of extra rapid-acting insulin corrections.
Diabetes is biology, not maths - and we can't always expect the numbers involved to behave in a predictable, logical way. This will be news to none of you.
So HURRAH to the fine French pharma folks for finally stepping up to the plate and launching a 0.5u pen. Mysteriously though Sanofi are yet another pharma company to market a half unit pen with a 'Junior' mindset (NovoNordisk did the same with the NovoPen Echo). It is as if only children could possibly find a use for half-unit increments. I can only hope that adult patients will not have difficulty* in accessing this potentially very useful addition to their Diabetes Gubbins stockpile.
EDIT: *Due to the ridiculous immediacy of the flow of information in the Twit-o-sphere, having posted this just a few minutes ago someone has already pointed out that the JuniorStar can be obtained directly from Sanofi, without the need to jump through tortuous prescription hoops and bothering your surgery/clinic. Simply contact the Sanofi helpline. Thanks to @davidcragg for the tip :)
Sunday, 10 August 2014
Need to know - Diabetes UK's Make the Grade Campaign
There are a lot of things that you can learn.
Really. Lots.
The world is a big place, and almost everything about it has a bewildering level of complexity and detail that can be known. And however much you know, or think you know about anything, there is still more that can be learned.
As an example (I think I am nicking this from QI, but it may well be a conversation I had with my father-in-law about maps) the UK is an island, and you can find authoritative estimates of the length of its coastline. I say estimates, because of course coastlines being what they are, all 'wibbly-wobbly', cartographers quite rightly usually measure a series of straight lines from point-A to point-B without going around absolutely all the wibbles (what Slartibartfast described as the 'lovely crinkly edges'). In fact if you wanted a more detailed and empirical measurement, you would need to carefully measure in and out of each tiny inlet and rivulet; and decide how far inland to stop measuring the rivers. You would suddenly have a whole lot more coastline to measure. But more than that, each of these inlets are made up of still smaller imperfections which each have an edge than can be measured. And down and down to a grain of sand level where you could, if you had quite a bit of time on your hands, measure around each fragment of rock, each plant cell, each molecule.
So it turns out that the length of the UK's coastline is pretty much infinite.
The more you look, the more you see.
And so it is that most of us spend most of our time deliberately ignoring most things. The world is just far too complex and difficult to comprehend otherwise. We live our lives on a 'need to know' basis, and mostly what we need to know to get by in the world is almost nothing about everything. The merest fragments. Therefore, by extension, we can't expect everyone to know very much about a subject, even if we have decided to learn quite a lot about it ourselves.
Can you tell me where to find all the hidden ammo packs and weapons stashes on the second 'Venice' level of Tomb Raider 2? Well quite. You do??? Dude, let it go - it was getting on for 20 years ago.
I was diagnosed at age 21, in the final year of my degree. Like almost everyone I knew absolutely nothing about type 1 diabetes when I had *that* conversation with the GP who had the results of my Oral Glucose Tolerance Test. At a push I might have been able to tell you that it had something to do with sugar and not being able to eat stuff (I know!). I saw something on Twitter this week by someone who had an overwhelming desire to eat an entire pack of doughnuts in the days before they had their diagnosis conversation, just because they 'still could'. I remember that feeling myself. That in some ways the conversation with a sober-faced Doctor was the dividing line that separated the old life from the new. I remember asking for sugar in my coffee on the diabetes ward, and wondering if honey would be OK as a substitute for table sugar because it was, you know, 'natural'.
Pitiful.
It took me a long time to learn just a little about living with type 1 diabetes, and an even longer time to unlearn some of the misconceptions I picked up along the way. I've been juggling life and my diabetes for just short of 25 years, and I now consider myself to be a semi-competent beginner.
Managing type 1 diabetes is like measuring the coastline of the UK. Managing type 1 diabetes in children and young people is like measuring it with a magnifying glass. It is almost infinitely complex.
It is no wonder schools need support. It is absolutely no wonder that some schools really struggle to help children and young people with diabetes and other long term conditions effectively. Every child is different and has a unique set of needs and support requirements. Every child with type 1 diabetes doubly so and twice on Thursdays.
And yet there is hope - there are beacons of great care and lessons that can be learned elsewhere. If you are connected to a school, nursery or college that is not quite stepping up to the mark diabetes-wise, now is the time for action.
Fanstastic care and support for children with type 1 and their families is possible. It is happening all across the country. Make the Grade is about providing help and information to schools, nurseries, colleges and clubs that are finding it hard to rise to the challenge of type 1. It is about getting the best care for each child so that they can maximise their potential.
Make the Grade offers a practical, focussed toolkit and information for improving care. Good job too, because as of September 2014 proper support and care for T1 children and young people in schools becomes a legal requirement. This is no longer something that can be put on the back burner because, you know, it's a bit tricky.
If you are a teacher, parent or governor and want to know how 'Make the Grade' can make a difference to children in your care, visit the Diabetes UK website to find out more.
Good care for children with Type 1 diabetes is possible. Many schools provide fantastic support to children with Type 1, but some have concerns about how best to look after children with the condition.
A new law in England means that from September 2014 schools in England must make sure children with Type 1 diabetes are properly supported. But good care needs happen right across the UK, whether you live in England, Scotland, Wales or Northern Ireland.
Schools have responsibilities for children with long-term medical conditions, such as Type 1 diabetes, so they need to know how to ensure children have the right care and support to enable them to take part in all aspects of school life.
That’s why Diabetes UK has produced new resources for schools which provide practical tips and information on how best to support children with Type 1 diabetes so that they are able to make the most of their time at school. Their Type 1 diabetes at school: School pack is packed to the brim with useful information, including a sample medical conditions policy, information about the condition and how best to support children and young people who have it, answers to important questions, like how to store insulin, what training staff might need and much, much more.
The free school pack is available to order on the Diabetes UK website at www.diabetes.org.uk/schools.
(from the 'Make the Grade' Action toolkit)
Friday, 18 July 2014
Speed boats and oil tankers - Guest post for Diabetes UK
Part of me knows the best way to improve things is to go back to basics and do some fasting basal tests and tweak my basal profiles based on actual information rather than the (un)educated guesswork I've been relying on for a while. Another part of me is having enormous difficulty summoning up any enthusiasm, since I know that the summer holidays are coming and I'm likely to stop going to the gym for a couple of months which will have a knock-on effect in itself.
So I'm spending my time grumbling and hurrumphing instead (my family are so lucky!).
On the plus side it does give me a chance to jot down this analogy that I've been meaning to for some time. It's something that usually strikes me when my BG levels are a bit errant, and insulin and food are just not playing nicely.
When it comes to trying to balance the effects of food and insulin on blood glucose levels (well and everything else.. but specifically food and insulin), one thing that makes it very tricky is the difference in the speed of action of carbohydrate and insulin. It's not enough to accurately match the dose of insulin to the amount of carbohydrate you are eating - you have to try to ensure that the two act more or less together to reduce BG wobbliness (technical term).
Almost all carbohydrate is very much in the speedboat class. Fans of glycaemic index tables (GI) might agonise over whether something is high GI, medium GI or low GI, but in my experience the differences equate to something being 'almost instantaneous', 'really very fast indeed' or only 'very fast'. Not a great deal of protection against the ravages of a post-meal spike, either physiologically, or that emotional kick in the guts of seeing your levels rise from a decent pre-meal number well into double figures an hour or so later. From the very first mouthful those big outboards start roaring and the carbs go zipping and zooming about, gleefully spraying glucose in their wake.
Insulin, on the other hand - even the fancy schmancy 'rapid acting' analogues can seem painfully slow to get going. More like one of those behemothic oil tankers or container ships. With a great groaning and clanking, the thrum of the plunger on an insulin pen or pump delivers the dose and then... Nothing. Watch and wait. Is it an illusion? Is it actually moving yet? Nope. Still can't see anything happening.
Vooooom! Swish! The carbs go tearing past again. Running rings around the slumbering giant.
This is particularly the case for me when I am waiting for a correction dose to kick in. I've had to stop myself from checking post-correction BGs before an hour has elapsed. Any less than that and the chances are my BG will be almost unchanged. An hour! Thanks Novo Turgid - not exactly breakneck.
Of course... one of the things about an oil tanker is that once it is moving, there's not a lot you can do about it. All those stories about them needing however many hundred nautical miles to slow down or turn a corner. And so it can feel with rapid insulins.
Nothing... nothing... nothing... Ah good, movement! Good... All good, back into range. Right that's enough now thanks... STOOOOOOOOOP!
But on and on, the dose lumbers forward - an unstoppable force. All-ahead full. The tanker has now run straight over those speedboats crushing them to matchwood and we could very well be steering directly toward Port Hypo.
Corrections can be a tricky course to navigate. Artoo tries to help by offering a suggestion of 'Active insulin' - how much dose is still working away, but there are *many* variables to factor into that equation. Sadly I find Artoo's attempts to be the vaguest of indications at best, and often wildly inappropriate to the particular circumstances of the moment.
Patience is the skill I have to master. I am always trying to remind myself that while the spike in my blood glucose levels may have happened in only 45 minutes or so, the insulin correction will only have stopped after something like 4 or 5 hours. If I get impatient and overcorrect in the meantime I am likely to cause myself another problem (and more wobbles) by overdoing it.
Aye aye, Cap'n.
Wednesday, 25 June 2014
Hands up who thinks kids with diabetes deserve decent care and support in schools
I was diagnosed at 21, during the final year of my degree. Not perfect timing I suppose, but I recognise that I had it a whole LOT easier than the thousands of kids who are diagnosed at a very young age and who have to try to balance life with type 1 diabetes alongside the unpredictability, raging hormones, growth spurts and peer pressure of school life.
I. Cannot. Imagine. It.
So hats off to Diabetes UK for their 'Make the Grade' campaign which aims to improve the support offered to children with diabetes in schools.
If you'd like to find out a little about what they are doing and why it is so important, they have produced a nifty piece of You-Tubery here:
I. Cannot. Imagine. It.
So hats off to Diabetes UK for their 'Make the Grade' campaign which aims to improve the support offered to children with diabetes in schools.
If you'd like to find out a little about what they are doing and why it is so important, they have produced a nifty piece of You-Tubery here:
Tuesday, 17 June 2014
Uncertainty Tennis
The game begins some time before it starts, usually at least a day before, often more. You make a treatment decision based on what we long-term pancreas impersonators hilariously think of as 'what normally works', except that, on that day, it doesn't. Undaunted, you take some more insulin and/or carbs that 'should sort this out'. Except that it doesn't either. Or the next thing. Or the next.
Now that the groundwork is in place, the game can begin in earnest. Evenings are my favourite time to play, since that is the time of day when I eat the widest variety of meals often with the highest carb load.
Play.
First serve the other day was a carefully carb counted plate of pasta. A meal I have often eaten without suffering undue BG chaos for many years (yes I know... odd isn't it). Bolus delivered and food eaten. 15 all.
An hour an a half later, since things have been a bit unreliable over the last couple of days I decide I should check post-meal just to see how things are going. BG well into double figures. Darn. And pasta has a reputation for being very slowly absorbed too! And I didn't even muck about with extended bolus, blah blah blah. 15-30.
Now I know that the meal dose is still chugging away. But I also know that I really shouldn't have shot up this much by now. Artoo thinks there is plenty of IOB (insulin on board), but from experience it seems that would only be the case if I'm 8 or 9 at this point, rather than 12-point-annoying. Override the advice and whack in another unit. 30 all.
Another hour passes and I come over all hungry. Hmmm. Best be on the safe side. Low 10's. Well OK. Not low then. Still quite a lot of IOB though. And I *did* override. Sit tight or do something else? Pasta will still be going strong right now, won't it? Will it? 40-30.
Then a stunning approach shot... 20 minutes later and for reasons I can never fully explain I pop in another .7u - Deuce.
The crowd gasp! I've stopped testing now and I'm playing on instinct...
Too much IOB now surely? 2 Fruit Pastilles.
Then a minute later another one.
Still don't want to test. Too many out of range numbers today and I just don't want to see another in either direction... It's like whatever action I've just taken immediately feels wrong so I have to counteract it before it has a chance to take any effect.
Third of a unit.
Swig of lucozade.
Biscuit.
Too much surely?! Half a unit. The crowd are in their feet... (I'm milking it for comic effect now).
Finally after several hours, I can resist it no longer. I check again. 5.whatever with umpty units IOB, plus the last few lots of feverish carb corrections and whatever pasta remains still ticking away. Not only that, but (based on which part of the last two day's numbers I consider to still be applying tonight) I could quite possibly expect to rise, or fall, OR stay perfectly level overnight.
So bedtime looms and I have to decide whether to take it to the tiebreaker and wait up for some (most?) of the IOB and/or onboard carbs to work their way out along with whatever I decide to guess at to mop up the remaining IOB.
Or I simply munch a little something, retire, and hope for the best!
I am fully aware that my evenings of 'uncertainty tennis' are largely my own doing. Without a CGM, and when things have shifted such that I have little confidence in what I think ought to happen with a dose or correction I find it all too easy to slip into a rapid rally of insulin and carb corrections.
It would be easier to resist if I hadn't had so many evenings when 'just leaving well alone' meant I spent 4 hours in double figures only to eventually correct with what I had thought of doing in the first place. That and the fact that I've played some amazing games in the past where I've aced a high or low BG into flatline submission with some audacious... erm... 'shots' (sorry!).
Strawberries and cream anyone?
Tuesday, 10 June 2014
The "I can..." of insulin pumps - Diabetes Week 2014
When I was thinking about this year's theme of 'I can' I was reminded of a conversation I had with someone last week about insulin pumps. It was something that they were being encouraged to consider, but like pretty much everyone else (myself included) their initial reaction was uncertainty. Uncertainty over being connected to something 24 hours a day. Uncertainty about relying on a fragile piece of technology to keep them alive. Uncertainty about how it would make them feel and how others might view them. Uncertainty over whether it would actually improve anything at all. In short, they didn't really think it was for them.
I know those feelings well. I had them all, and many more besides. I was 'pump averse' for many years. My clinic suggested that it might help with my recurrent hypoglycaemia, but could never really articulate how that might happen. All I could see was a big bunch of (what I thought were) downsides.
In the end, for me, it was reading the experiences of pump users online that convinced me to give it a go. The day to day nitty gritty of how it helped them. Now I'm not saying that insulin pumps are for everyone. Some people wouldn't want to touch one with a barge pole, others do just fine on Multiple Daily Injections and are completely happy as they are. But if it is something you are considering, here are a few 'I can's that an insulin pump has given me to add to your thinking:
If I want to go to bed at 5.0mmol/L, I can.
Ahhhhh basal! I have been through quite a few basal insulins in my 25 years of pancreas-impersonation. In the old days we were always advised to have a snack before bed. Why? Well because in all likelihood your basal-du-jour was going to be a bit over-enthusiastic in the early hours and could well plunge you into an overnight hypo. It was many years before I discovered 'basal testing' (systematically adjusting your basal insulin by fasting tests so that it just holds you steady) but try as I might, even with fancy schmancy analogues I could only ever get my basal 'near enough' on MDI. A bit too much here, not quite enough there... make up the differences with meal doses and guesswork. With a pump, the flexibility of multiple basal patterns which can be tweaked and changed with almost infinite precision mean that I can adjust things so that I am actually starting from a level playing field. To my mind, basal is the bedrock of my BG levels. If my basal is out, even by just a little bit, my meal doses and corrections just do not play fair. So I no longer have to worry about stocking up on carbs before bed, because my basal insulin should hold me level and when I need less insulin overnight I get less. Where I need more just before breakfast, I get more.
If I want to give a really accurate dose, I can.
My doses on MDI were often a bit 'ballpark' to be honest. I have always counted carbs and altered my doses based on what I am eating, but I usually rounded up or rounded down to make things easy. Plus I would use insulin:carbohydrate ratios that meant I didn't have to get a calculator out all the time. The Accu-chek Expert was a great tool on MDI for tweaking doses, but I was still using a 'whole unit' pen so there was a degree of rounding even then. Now I can bolus in decimal places. And those tiny tweaks of insulin here or there do seem to make a difference. True enough my carb estimates are still often done by eye, but at least one part of the puzzle is now being calculated and delivered precisely.
If I want to stop here for lunch, I can.
This was the biggest surprise for me. Rediscovering spontaneity. I began pumping with an fairly entrenched anxiety about being hooked up to something 24/7. I know almost no one who has not had that when considering an insulin pump. Many people say that within a few weeks (days for some people) they become completely at one with their new robot pancreas and never give it a second thought. I can't say that it was quite so quick for me, but certainly in less than six months I had stopped noticing being attached at all and my emerging 'unthought' behaviours (like automatically hooking it to a t-shirt when getting changed) meant I never really gave Artoo another thought. If you are newly on an insulin pump and it still feels a bit of a nuisance or 'in the way' hang in there. Where was I? Oh yes... Spontaneity. So I was well prepared to dislike being attached, but I really hadn't expected that attachment would turn out to be such a bonus. Out on a wander on holiday... get a bit distracted and it takes rather longer than anticipated... Oh this pub looks nice, shall we stop for lunch? What would have always previously been "No we can't, I didn't bring my pens with me" has simply become "Yes!". Wherever we are now I always have my 'kit' with me, and while I used to like the idea of being able to leave all this stuff on a table and just walk around 'like a normal person', personally I have come to realise that I feel much more 'normal' if I can eat whatever I fancy whenever I want to, without having to remember to bring a case full of gubbins with me everywhere.
If I want to have 20 boluses/corrections/snacks in a day, I can.
Well strictly speaking I always could have, of course. But in reality I never did. There is something so easy and effortless about push-button dosing that I am far more likely to add in a fraction of a unit here or there during a day when I recognise that I probably wouldn't have bothered to get a pen out, airshot, dial up and inject. This has increased freedom around snacks too. Where I previously found them just to be too much of a hassle on MDI, almost always resulting is a BG wobble in one direction or other (depending on whether I had bothered to bolus or not) I've had much more success with the effortless mini-doses a pump offers. It's easier, so I bother to do it.
If I want to run a marathon (or just vacuum the stairs), I can.
Again, this was something I more or less tamed with MDI, but the additional options available on a pump, like the ability to set a 'temporary basal rate' for several hours, have added considerable 'polish' to many of those day-to-day conundrums of physical activity. I am far less likely to see my BG levels dip below my target range when exercising these days and I'm buying far less Lucozade!
Just a few things of the top of my head. I'm sure most people on pumps could write their own list. Of course diabetes is still annoying and frustrating quite a lot of the time. A pump is not a magic bullet and it still involves a fair bit of faffing about. But for me having a pump has made a tighter set of BG levels more possible, with less effort and far, far fewer nasty lows.
If you are struggling with wrestling your diabetes into some sort of submission and have been offered a pump as a possible way forward I'd suggest giving it a go.
If I can do it... You can.
Sunday, 18 May 2014
Looking back - DBlog Week Day 7
Today's topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!
There are so many posts that I loved reading that I can't list them all. Here are just a few off the top of my head:
Day 1 - Change the world. Kev at Circles of Blue gets cross
Day 2 - Poetry Tuesday. Either Grumpy's limerick or Kim's haiku
Day 3 - Scott Strange's amazing post about depression
Day 4 - Could have been any of Pumplette's posts (ably edited by Annie). I loved the dialogue between you two!
Day 5 - Jules embraces change and mentions boobs. What's not to like?
Day 6 - Sara from Moments of Wonderful shares 12 hours of a Saturday.
And there are so many more I could have listed. I know if I wrote this post in another 20 minutes I'd probably write a different list entirely.
As ever, massive thanks go to Karen at Bitter-Sweet for making the whole thing possible.