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.

64 Days with the Medtronic 640G: Ep 7 Overnight Hypoglycaemia

Those of you who can remember way back when this blog started (if you even exist, you have my undying affection for your extraordinary stickability) may recall that we were prompted to start writing a blog about my diabetes as a family after a particularly nasty overnight hypo. It was the beginning of me realising that I was *nothing* like as good at the whole 'pretending to be my own pancreas' lark as I had managed to convince myself that I was. I began to realise how much I didn't know, and that one event led me to connect with literally thousands of others wrestling their own diabetes into submission every day. My life, and particularly my diabetes management are very much the better for it.

Overnight hypos have been a bit of a recurring theme throughout my 25 years of living with type 1 diabetes. I am lucky in that I have never needed paramedic callouts, but there were many times along the way when Jane had to step in at breakfast time to 'bring me round' in the years before we started writing this blog. I look back at those early posts and am bewildered and ashamed that it took me quite so long to realise how much effect this was having on everybody else in the family. How unfair it was on them. At the time though, I guess I had convinced myself that my management was 'as good as could be expected'. I knew I was having 'A few too many highs... a few too many lows'. But doesn't everyone?

If you are the sort of person who approaches anywhere near 8 hours a night when you live with type 1 diabetes, you are spending fully a third of every day in the land of nod. That is an awful lot of time for things to go wrong - especially if your basal insulin dose is not adjusted correctly* or your requirements have moved since you last checked. You may be lucky enough to get clanging warning signs when you dip below 4.0mmol/L - enough to wake you up and sort yourself out. But you can't rely on them. And the more and longer the periods you spend below 4 during the night, the more of a hammering your hypo awareness will take and the less you will feel them. A classic vicious circle.

I am coming toward the end of my 64 days with the MiniMed 640G now (Medtronic have kindly allowed me to keep hold of their toy for a little while longer as there are a couple more posts I'd like to put together). Today seemed like a good opportunity to gather some of the snippets of video that I've been filming since the beginning and edit them into a 'SmartGuard vs Overnight Hypoglycaemia' post. Has Smartguard made any difference? Has my overnight hypoglycaemia reduced at all?

Watch the video below to find out what has been happening over the last 9 weeks. As always, I'd love to hear your comments or any questions, please leave them below or post on my Youtube channel.



*During the video, I mention how important I have found the concept of basal testing over the last few years, both on MDI (multiple daily injections) and also on a pump. Systematically testing and adjusting my basal insulin on an ongoing basis helps me to keep my meal doses and corrections working more or less as I expect them to (ha!). It was one of the most significant 'new concepts' I discovered when I first started comparing notes with other people with type 1 diabetes online. If you'd like to know more read this post by Gary Scheiner (Think Like a Pancreas) which explains the principle. It is written for pump users, but would be easy to adapt for once- or twice-daily basal insulin injection on MDI.

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

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

About bloomin time!

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

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

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

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

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

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

Lantus 0.5 unit pen at last - Pendiq Intelligent Insulin Pen

Lantus 0.5 unit pen at last - Pendiq

I *love* the DOC.

No really.

I absolutely love, love, *love* the DOC.

Just a quick glance at Twitter and I can be cheered, encouraged, supported, made to laugh and occasionally brought to tears all at once. Other times you go looking for some lightweight wit and wisdom, or just to see what folks are up to and suddenly discover some weighty new piece of research, campaign to fight for or better still... everyone's favourite diabetes benefit an exciting-sounding new gadget.

Before Artoo became my constant companion a couple of years ago, I wrote quite a few posts about Lantus basal insulin. I spent quite a bit of time trying to wrestle Lantus into submission, and eventually we got to the stage where we muddled along bearably, but it's fair to say that one of my main motivators for starting pump therapy was to get 'proper' basal coverage, that accurately reflected the ebb and flow of my body's rhythms over a 24 hour period.

Comparing notes with other users it seems I was not the only person to be frustrated by Sanofi's rather less than enthusiastic approach to insulin delivery. Most of the injection pens that fitted Lantus were, frankly, nasty. And none of them offered doses in increments smaller than 1 unit. This might be OK if you are on higher doses, but many T1s are quite sensitive to insulin. I'm not quite sure how small children cope, for example. The minimum dose adjustment could well be a significant percentage of the total.

The other pen-related problem I had fixed around the same time related to my terrible memory. It may be hard to believe it you do not live with diabetes yourself, but after a few thousand injections they can become so automatic that you barely think about them. Sometimes you have absolutely no idea whether you have injected your dose or not. I changed bolus (mealtime) insulin to Humalog to get hold of a pen with a 'dose memory' the Humapen Memoir so that if I was ever unsure I had some means of checking that didn't involve me having to write something down, which I was just as likely to forget to do... Or possibly even to remember to write it down, but then forget the actual injection. See what I mean about my memory? Hopeless! Sadly the Humapen Memoir has since been taken off the market and it looks like its development has been abandoned. So now the only memory-enabled pen available on prescription in the UK is the NovoPen Echo.

But...

Thanks to a Twitter conversation I chanced upon earlier this week, I now know there is an alternative. And a very interesting alternative it looks to be too.

Enter Pendiq, the Intelligent Insulin Pen

Pendiq is a new breed of injection device from Germany initially launched in 2011 and relaunched in 2012. Such is the ruthless efficiency of German engineering that this pen boasts not just 0.5u accuracy but increments of 0.1u (from 0.5u upwards). Delivery is unlike any other pen I am aware of - dial up the dose on the display, press the button and a precision motor delivers the insulin at 2/u per second. The pen stores and displays around 2 months worth of injection doses and timings on an LCD screen and the website boasts all sorts of download opportunities and compatibility with logging software such as SiDiary. The battery is rechargeable and the device seems to be compatible with 'standard' insulin pen needles. The Pendiq is compatible with Lilly and Sanofi-Aventis insulins, which means that both Lantus and Humalog doses are now available on MDI in 0.1u dose increments. Heck you can even choose from five funky colours!

Unfortunately there is a snag. Isn't there always? It seems the Pendiq is not currently available on prescription in the UK. It looks like you can buy it via the website, but with the shipping/delivery it will set you back almost €185 (around £150). So not cheap... by any means. You would also probably be wise to speak to your DSN/hospital/clinic to get there guidance if you were tempted to spring for one before you part with any cash.

If you'd like more information, visit www.pendiq.com

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance

Neither one thing nor the other

Well... a few weeks into the holiday period and things haven't completely fallen apart control-wise. Yet. We had some time away in Cornwall and perhaps because I feared the worst I've returned feeling that it worked out pretty well. Oddly I seemed to fall exactly between two possible Lantus doses. A unit down and sugars stayed grump-inducingly high, a unit up and I had to fire-fight hypos with regular medicinal ice creams. You can guess which one I opted for. Oh for a half-unit delivery device for Lantus!

When we returned home I dropped Lantus back down, expecting (with more usual meal choices) that things would settle. But oh no... not a bit of it. Diabetes often seems deliberately contrary, confounding whatever expectations I have of what will probably happen next in the general scheme of things. So I reduced Lantus by the one unit which had meant I was needing to drop meal doses by 20-30% and expected that the hypos would disappear, which they did. And then some. After two days consistently in the teens I put Lantus back up again and waited for the hypos to reappear. They haven't. And neither am I needing to reduce meal doses to avoid them any more. If anything I seem to be running slightly high more often than not.

Maybe it was the sea air? The sand between my toes? We did a bit of wandering about, but certainly not what you'd call 'exercise' in any energetic sense of the word. Whatever it was the hyper-sensitivity I had to insulin in Cornwall has mysteriously evaporated and the same doses are now behaving very differently.

To add to the nagging voice in my head about these recent slightly higher levels, my appointment for annual review has just come through. Ideally I'd like to have a few very tightly controlled weeks in the run up to my HbA1c. After all I've had a few in recent months.

How hard can it be?

Not cool - insulin storage problem

I'm still waiting to write that post extolling the virtues of Colin, my Accu-Chek Expert, but even his shrewd bolus-calculating savvy was not up to coping with the BG craziness of the last seven days.

Things just went bonkers.

And it made me realise that this is not unusual. Since I started putting a lot more effort into my diabetes a year and a bit ago I've noticed a definite repeating pattern in what I previously thought was just diabetes randomness:

1. Finally work out the rules
2. Good numbers for a few days. Yay!
3. Wow that was an AMAZING day. Woo hoo!
4. Errrrr hang on where did that come from
5. Right something's definitely not right here...
6. So the rules have changed again then. Great, thanks for that.
7. Erm... try this?
8. Nope. That was annoying.
9. What about this?
10. Right OK not that either...
11. OK that's looking a bit better
12. Definitely on to something here...

....aaaaand repeat. Given enough trips around the cycle the doses/ratios/splits/timings begin to repeat themselves and off we go again.

But this one wasn't like that. This one was off the scale.

Looking back over recent records I'd had a spectaculatly good patch. Over a fortnight with 75% of readings between 4 and 8 (including several 1hr/2hr post meals). Anything over 10 was a bit of a surprise. I was also having almost no hypos during this period. In short it felt like I was winning. It felt amazing.

I started having a few hypos to tentatively dropped my Lantus by 1u to see if I'd settle just a notch higher up. I only lasted 2 days first with a prefectly acceptable 6.9 average, the second constantly fighting highs and averaging at 10.8.

The next two days, Lantus back up by 1u were not too bad, but the following few days were a complete disaster. Countless corrections were having little or no apparent effect. One morning despite a 2u correction the previous night (at 14.x) I woke to 16.6. I went for broke decided on double my usual breakfast insulin:carb ratio +20% for 'stress', injected 8u and waited for it to come down. 5 hours passed and I still hadn't eaten anything other than a lump of cheese (hoping to trick my liver into cancelling any DP action). BG stayed above 9.0 right up until lunch. The following day saw me needing 10u for a single slice of breakfast toast (that's 5x my usual amount)!

While waiting for our new fridge to be delivered, I posted a moan on a forum describing recent events, and suggesting that the Diabetes Gremlins had perhaps snuck in at night and replaced the Lantus in my cartridge with water. Someone happened to ask if there might be any problem with the way the insulin had been stored. Hang on a minute... "While waiting for our new fridge to be delivered...".

And then it all fell into place. Our fridge has been a bit flaky for some time, maybe even a year. Mostly keeping things cool, sometimes getting a little enthusiastic and getting really cold, other times appearing to warm things up, but never actually completely broken. The light had stopped coming on a week or so ago and we'd decided that enough was enough and ordered a new one. I was down to the last cartridges in the box of both Lantus and Humalog and it seems that the fridge's repeated misbehaviour had substantially affected the insulin's potency. The box of Lantus was the older of the two, so my guess it that it was pretty much shot. The newer Humalog left to fight the BG battle on its own at half-strength. Another one to add to the 'watch list': Count carbs, consider food absorption properties, check basal level, consider level of activity, rotate sites, make sure fridge is working.

I've ditched the suspect cartridges and with nice new fresh ones things have quickly returned to normal. Well today at least.

Going on holiday

We've just returned from a great two weeks away. This year we gave the kids the choice of three different holidays. Options included a fortnight by a beach, a short break in Switzerland, but the winner was a combo of a week in Ironbridge in Shropshire, followed by a week in the Lake District.

Holidays are always a bit of a juggling act diabetes-wise. You are completely out of routine, you eat out far more often, wine flows, ice creams and treats beckon.

Thankfully Lantus continued to behave itself back in its morning slot. Staying in the UK meant there were no pesky time-zone issues, though I did have to gradually shift my injection time to suit our more relaxed holiday breakfast timing. Thankfully my first blood test of the day was pretty much spot-on most days. I even managed a little experimentation with post-breakfast spikes. I've settled on a new slightly higher insulin:carb ratio taken 20-30 minutes before breakfast, depending on my fbg (pre-breakfast) level. An hour or two after breakfast was mostly in the 8-10mmol/l region which compared to some recent disastrous readings felt pretty good.

The other thing about holidays is all that great wandering about you can do. Ironbridge is absolutely packed with things to look around, and it's almost impossible to visit the Lakes without doing some kind of walking about. The benefit of this, of course, is that you can sneak an occasional ice cream or cake to keep your levels up, without having to worry about injecting. Either that or I just gradually worked my way through a pocketed packet of Fruit Pastilles during the day. At Blist's Hill (the Victorian Town museum close to Ironbridge) I even managed to win a Sherbert Fountain by knocking it off a shelf with a pop-gun at the Victorian funfair. Initially I was a bit disappointed that these now come in a plastic tube, rather than wrapped in yellow paper, but the benefit was it lasted in my pocket until a wander around Ambleside and Skelwith Force.

I'd forgotten all about Sherbert Fountains... Hypo prevention has rarely been so much fun. It was like being 8 again.

Lantus problems and going round in circles

And on and on and on...

When we began writing about our experiences of living with Diabetes it was, at least in part, in response to a nasty overnight hypo brought on (I suspect) by the action of Lantus glargine. From some reading I have done since it appears I am not alone in this. That there are other people with diabetes using Lantus and injecting their dose at night time (recommended by the manufacturer and for most people the best option) who find they sometimes go low overnight, or wake up low in the morning.

One of the difficulties in managing diabetes with MDI (multiple daily injection) basal-bolus is that if you don't get your basal (background) dose correct then everything else becomes incredibly difficult to manage. You have no firm footing on which to start your day.

I think the late-at-night injection timing is suggested because it puts Lantus's onset period (perhaps an hour two until full strength) at a time when you have finished eating for the day and are usually if not actually asleep, then pretty much at rest. When I moved my injection to the morning, though my overnight levels were suddenly very steady and reliable, I had problems with high blood glucose spikes after breakfast. In response I began to split the dose, morning and evening, having a little just before bed, and the rest at breakfast. My hope was that this would spread the activity more evenly over the day. Sadly though, after a few months I can see that this has caused more problems, and not really solved anything. I found I was waking up low again, or waking slightly clammy having gone hypo overnight. On several occasions my liver then took matters into its own hands and began dumping glucagon into my bloodstream as it's own emergency measure. I would wake high, inject rapid-acting insulin and wait until my levels dropped before eating breakfast. After 2 hours or so I would give in, my levels still stubbornly high, eat a fraction of my usual breakfast and wait to see how things were going at lunch. Not only that but if the smaller Lantus dose didn't send me hypo overnight, then it had run out of steam by breakfast anyway and I was heading for spike central again after breakfast. Smaller doses you see, tend to act over a shorter time. With no Lantus hanging around, and anything from 15-45 minutes for Humalog to get going even a fairly low GI breakfast was going to cause problems. What my neice might describe as an #epicfail.

So I've gone back to Lantus in the morning. Suppertime and pre-breakfast readings are more constant. The post-breakfast problem still exists, of course, but at least I've lost the overnight hypo and liver-dump double whammy. Last time I didn't spend much time experimenting with the timing of my breakfast bolus (rapid-acting) doses. My hope is that with enough time between injecting and eating I might be able to stay out of the teens between breakfast and lunch.

Maybe.

Basal driving me bonkers

This is ridiculous.

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

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

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

The technique I've come across goes like this:

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

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

I'll let you know how it goes.

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

Update: Lantus problems and going round in circles

Living on the edge

My control has been, in recent weeks, really pretty good I think. Certainly it feels significantly better than it has been for several years, and it was never really bad even then. A change of insulin, adjustments my approach to my basal (Lantus) delivery and a slightly more focussed attention on carb:insulin ratios are all paying off. All those peaks and troughs are being evened out.

I'd tightened up quite a bit before the switch from NovoRapid to Humalog, but even so I think the change (and the time/date dose memory of the Memoir pen) have been hugely helpful to me. In a quick, thoroughly unscientific compare-and-contrast of a fortnight's figures on each insulin here's what I've found:

I am now having
30% fewer low-level hypos (my warning signs are significantly improved as a result)
28% fewer results outside my target range of 3.9-9.0mmol/l
80% fewer fbg (pre-breakfast) results outside target range

So it feels very much like the effort is paying off, and while I do catch myself smiling an occasional smug smile these days I also recognise that these closer-to-normal figures bring with them their own set of peculiar problems.

If you are happily spiking away into the teens after every meal you have a degree of slack while your insulin chugs away before you might dip into hypoland. With my new tighter range I'm spending far more time at or near 5.5mmol/l - which, while good, is also just on the edge of going hypo. A few weeks ago I'd miscalculated breakfast and was 10.0mmol/l before lunch. Slightly annoyed, I decided not to eat straight away, but to stroll to the supermarket to pick up 4 pints of milk. The walk is level and takes about 6 or 7 minutes each way at a fairly easy pace. When I returned with the milk I tested again to find I was 4.0mmol/l. This was just what I'd hoped for, but at the time I was struck by the size of the drop, over the short space of time, with the very little effort expended. To drop from 5.5mmol/l to 3.5mmol/l is all too easy.

Living life at or around 5.5 basically means, for me, that I need to take a little short-acting carbohydrate whenever I walk anywhere or do anything, in order that I don't dip low. There are some days when you overdo it slightly, which is a bit annoying. And days when you don't allow quite enough - I slightly underdid the compensation yesterday for a late evening walk. Went to bed at 6.2, but fbg was 3.5 this morning so I was obviously trending downwards last night.

Much as I'm still fairly pump-averse it makes me envy pumpers with a CGM (continuous glucose monitor). Now that would be a life changing bit of kit.

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

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

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

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

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

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

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

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

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

Update: Basal driving me bonkers

Timing is everything

Injecting Lantus first thing in the morning... Just a quick follow up to my recent post about switching my Lantus dose to first thing in the morning. It works!

I've just looked back over some old bg readings for the last few years and they suggest I've been waking up to a low level hypo perhaps 2 or 3 times a week. Since switching the timing of the dose 10 days ago my levels have pretty much all been in the 3.9 - 7.5 mmol/l range with the majority between 4.4 and 6.7 mmol/l.

I got into an email conversation with Matt Jones who said he used to have a similar experience and had pretty much solved it overnight by injecting Lantus in the morning. I'd tried slightly altered doses (having got hold of a 1-unit Autopen) and having a small amount of slow-release carbs last thing at night to beat the morning lows but neither had been particularly effective.

I seems it wouldn't work for everyone - I mentioned switching the dose timing when speaking to my DSN and she had said that in her experience it just 'moved the problem', but for me the difference has been amazing.

Thanks Matt. I owe you one :)

Update: Morning and Evening

Morning person

I am not, as Jane will tell you, a morning person.

It's not, I hasten to add, that I am at all grumpy(!), rather that until something approaching 9 or 10am you are lucky if you get more than a grunt out of me. And then there's the sighing and yawning. Lots of that.

Over the last few years, mornings have also had an added complication in that it has not been unusual for me to wake up a little low. More often than not it's just a case of something sugary with my coffee and all is well, but it's never a good start to a day. A few times a year I am not only low, but my levels are dropping, and Jane has had to intervene.

Since we've been blogging about our experiences of living with diabetes this has been a nut I've been trying to crack. I've tried dropping 2 units of Lantus which seemed to throw my system into a high-sugar tantrum. I've tried dropping 1 unit of Lantus, which involved getting hold of a new, slightly different Autopen. I've tried various amounts of carbohydrate at suppertime to stave off the morning low.

None of these has been particularly successful.

So now I'm trying something something suggested by a commenter on this very blog. I've moved my Lantus injection to the morning rather than last thing at night.

Although Lantus is often said to have a 24 hour peakless profile in reality many Lantus users find the graph is a bit more complicated than that. Indeed this graph on lantus.com shows a slightly flattened version of what I believe happens in my case. It shows a period of onset rising to a mini-peak 4-6 hours after injecting; followed by a slight drop and levelling off; then a fall-off of activity at around 18-28 hours (which I believe can be more or less depending on the person). If my morning lows are due to Lantus's higher level of activity in the hours after injection - at the time when it appears I need less background insulin - then a move to a morning injection should match the fall-off of activity with my reduced need.

It's only been a few days yet and I've not had a chance to run any basal tests to see how things are going, but so far I've not had a pre-breakfast low and levels through the rest of the day have been pretty much what I'd expect.

So far so good. I'll let you know how things progress.

Update: Timing is everything

Stop press. All units might be equal after all...

There's nothing like writing something down and ranting about how nonsensical and inexplicable it is to change things. A few days ago I went on at length about how dropping 2 units of Lantus led to consistently high readings the following morning and seemed to cause rampant blood glucose rises for the whole next day. Well guess what. Over the last week I've had low blood sugars in the morning a few times, and each time I've dropped back to 12 units for my evening dose. It seems, almost deliberately to spite my blog post, that my body has decided to accept this little change with good grace this time. Indeed last night (after a briskish 9.30pm walk) I dropped to 12 units and ate approx 20g carbs and still woke up a little hypo this morning!

I'll let you know how things carry on...

Update: more on my continuing Lantus fun and games here.

Some units are more equal than others

All units of insulin are equal, you would think. But it seems some are more equal than others.

A week or so ago I had a very odd hypo. In fact it was that experience and some of the conversations we had about it afterwards that were the catalyst for us as a family to begin this blog. A place where we could write about our own experience of living with diabetes. Look at it from different angles, poke it with a stick, turn it over and over. The very act of writing these things down means you have to think about them quite carefully. To consider how you feel. To wonder what they mean. This in itself probably makes the writing worthwhile. Not in some maudlin, self-pitying, navel gazing way, but because when you've lived with a condition for a decade or two there is a tendency to begin to ignore it. To stop really thinking about it in any front-of-mind way. It's just there, the elephant in the room, squashing furniture, generally making a mess and getting in the way but largely ignored.

So even if you weren't reading this, it would still have been worth my writing it. Well not this bit actually, this is just the preamble. But the next bit definitely. In fact probably best if you just skip forward to the next paragraph and save us both some time. Here is an amazing thought though. A week or so ago I had an odd experience with a condition that I've been living with for about 20 years. And now, just a few days later you can read about that even if you live on the other side of the world. And if you have shared an experience that you read here, you can make a comment and you and I will know that someone else has been there. That it's not just us.

When the dust had settled on the hypo of the weekend before last we wondered why some of the symptoms of low blood sugar had extended for hours after normal and even quite high blood sugars had been restored. Why it had taken almost until the evening for me to fully 'get my words back'. It didn't help that when asked whether he thought this might ever happen again the doctor gave a pretty unequivocal, "Yes". It seems possible (though we are only guessing really) that a slight miscalculation of the size of jacket potato the night before might have led to a quite extended period of hypoglycaemia overnight. I woke with a start from a dream at one point which might have been my body trying to kick me back into consciousness to get something sugary, though my hypo-addled brain made up a convincing story about Derren Brown, subliminal mind control, advertising, Apple products and Twitter(!) and I just turned over. Maybe the length of period I spent with low blood sugars meant that part of my brain got stuck in hypo mode?

Overnight hypos are never a good thing. I'm lucky in that they are a far rarer thing for me now than they have been in the past, and they were never more than a few times a year even then. Nevertheless we have been left with a desire to try to tighten control again. If I am honest my focus has always been on keeping my sugar levels down rather than avoiding an occasional low blood sugar. Avoiding long-term complications and accepting hypos as a price to be paid for aiming at the tiny target range. Now I felt like I was being pulled in the opposite direction. Wanting to avoid having a hypo like that ever again.

I've been on Lantus glargine, a peakless basal insulin for a few years now. Peakless has always made a lot of sense to me in the context of a basal-bolus system and I certainly believe that it has helped cut out some night time hypos associated with a long-acting insulin which has a peak of activity. Of course peakless doesn't really mean peakless, it's just that the peak of activity for glargines is much less marked and the activity profile is far more level than other long-acting insulins. The shift to glargine involved the inevitable period of experimentation in terms of getting the new levels right. After the switch I found I was usually high first thing in the morning. I increased my night time dose from 10 units in increments of two in an attempt to get things back in line again. Initially I settled on 16 units, but all that extra insulin sloshing around made hypos during the day more common and after some more weeks (and quite a bit of chocolate) I settled on 14 units of glargine. Any diabetics reading will not be surprised to know that it wasn't quite as simple as that though... in that classic altering-your-doses-Kerplunk way, there was another unexpected consequence. Since beginning on a basal-bolus pen-injection system I had always taken my short acting injections before eating. Since I began using NovoRapid this has been immediately as I started eating. Now I was finding that if I injected before eating (especially if my levels were in the 4-6 target range) I would end up going low just after the end of the meal. It was almost as if the short-acting insulin, on top of the glargine was pushing sugars out of my bloodstream so rapidly that my digestive system couldn't keep up. The obvious answer was to give my digestive sytem a bit of a head start and wait till after the meal to inject. Obvious, yes; but after fifteen years of injecting before a meal I can't tell you how hard it was to try to remember the injection once it was all over and time for the washing up. I forgot to inject ridiculouosly often. Several times I even double-dosed forgetting that I had remembered. Not good.

After perhaps a year I spoke to my doctor about the difficulty and wondered whether there might be a different, slightly less aggressive short acting insulin I could switch to. Her advice was that it was more likely to be the higher level of background insulin and that I would be better reducing my night-time dose of Lantus. I tried it for a day or so, but immediately my morning sugar levels rose up and I went back to 14 units. Better the devil I knew.

So here I was again looking at my doses and thinking, maybe the 14 units of glargine was the reason for the hypo from hell. Maybe I did need to reduce that dose after all. It was time to give it a bit more of a thorough test. I tried it all last week. It was very interesting, and really quite confusing.

Two units of Lantus glargine make an impossibly big difference.

Over the last year or two it has not been uncommon for me to wake up with slightly low blood sugar. Something in the 3.5-3.9 range. Once or twice a week sometimes. A little fun-size bar with my morning coffee and I'm quickly back to normal. A few times a year I've woken up a little lower still and my brain function has started to fall to pieces. Repetitive action, confusion, talking nonsense and general family hilarity all round. So from that, I reduce my glargine night-time dose by 2 units and wake every morning with sugar levels pushing into the teens.

But it didn't end there.

Of all my meals, breakfast must be my most consistent in terms of matching units of short-acting insulin with carbohydrate. More often than not it's a bowl of high fibre cereal weighed on a set of scales, with skimmed milk and low fat natural yoghurt. Dietetically I'm on my best behaviour. But suddenly the usual rules did not apply. I would over-jab and under-eat and two hours later rather than finding my earlier high sugar levels corrected things would be just as bad or even slightly worse. I would find myself adding an extra four units of NovoRapid to bring my sugar levels down in between breakfast and lunch. Four units. Four.

Again after lunch some perfectly guessable bread/sandwich/piece of fruit carbs when matched with their usual dose of NovoRapid would result in significantly higher blood sugars than I would expect. Another four extra units of NovoRapid to try to keep things under control.

Well at least you managed to stave off the hypos though you say. Nope. Not a bit of it. Possibly partly because I was struggling to stem the ever-rising tide of blood sugars with usual meal/dose calculations no longer seeming to apply. Extra correction doses seemed to work OK as long as I was sat at my desk, but any kind of physical activity - even just a short walk to get some milk - was enough to drop me into needing something sugary. Thank goodness I didn't go to the gym that week.

I don't know whether this extremely fine balance between short and long-acting doses is familiar to anyone else but I find it very odd indeed. I can't explain how the reduction of just two units on one type of insulin can have such a huge effect on requirements for other dose-and-meal combinations, adding in an extra 8-12 units over the course of a day. Previously I had only experimented it for a day or so before reverting to what I knew, but to see the same things happening over the course of a whole week convinced me that it was not just a matter of miscalculation or bad guesswork. The whole balance of how many units to how much carbohydrate with how much activity had completely shifted. I may have had a few fewer hypos, but my overall control was so much worse that I felt I couldn't continue.

So for now I'm back to square one. The usual rules are applying again, and I'm just testing a whole lot more often. I might go back to having supper again. A piece of fruit just before bed that used to stave off the overnight peak activity of Insulatard in the years before the switch to glargine and the whole what-to-do-about-waking-up-high conundrum.

Your guess is very nearly as good as mine.

Update: Curiouser and curiouser...