Posted by on Tuesday, 8 August 2017

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

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

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

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

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

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

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

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

Except that they haven't.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Faster acting
After my slight false-start and once I had my ratios and basal back to more like where I would expect them to be I began to find my feet with Fiasp. During this period, here's what I found:
  • I did still need to pre-bolus, but only about half as much. Perhaps 15-20 minutes at breakfast and 10-15 minutes at lunch. Much more than that and I risked dipping low before the carbs kicked-in.
  • Corrections were acting faster, just as I hoped they would. This meant that my errors were resolved more quickly
  • Meals where I would not normally need to pre-bolus and where I'd expect reasonable results from an 'all up front' approach I actually needed to delay the meal insulin. Setting all or part of it as a square wave/dual wave/combo
  • Smartguard occasionally mangled these square and dual waves, cutting basal insulin and stopping the remaining bolus following a small dip in BG and just as the carbs began to hit, resulting in the dose only being delivered later on when I noticed what was happening. This was intensely frustrating.
  • The insulin action did seem to be shorter than NovoRapid for me, or at least the way that Fiasp makes more of the dose available sooner meant that the tail was less pronounced and I reduced my duration of insulin action to better reflect 'insulin on board'
  • Breakfast was my biggest challenge. Lower carb weekday ones (15-20g carbs) were relatively OK, but bigger weekend ones (45-50g carbs) were a nightmare. At some points in the year I can find I have to add an extra mini-bolus to account for my liver dumping glucose when I crawl out from under the duvet (even though my basal pattern always kicks-up at this time), but even that tried and tested strategy didn't keep me out of the teens after breakfast at the weekends. In the end I used a surprisingly strong bolus ratio that scaled the doses upwards where I was eating more.
Fiasp performing pretty well at 3-4 weeks in.
Finding the Fiasp sweet spot
There was definitely a point, when I'd been using Fiasp for about 3-4 weeks where I began to see distinct potential. There were still some horrendous numbers to be found, but there were some great successes too. For example, a Tapas meal out one Sunday with delicious breads, patatas bravas, beers and all sorts of incalcucables that was bolused late, in a series of guesses and to correct my earlier underestimates of carbiness where I could actively see Fiasp's faster action helping me out.

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

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

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

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

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

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

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

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

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

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

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


Posted by on Monday, 31 July 2017

Does Abbott Freestyle Libre improve Hba1c? - belated thoughts from Dx Amsterdam

More than 20 bloggers from across Europe gather for Dx Amsterdam

"I love deadlines" (as Douglas Adams used to say) "I love the whooshing sound they make as they fly by."

If I had set myself a reasonable time limit to write some reflections on my time at Dx Amsterdam in June I suspect it would have been rather sooner than this. But even though this is rather late, there were some bits and pieces I picked up over that weekend that have stayed me since, and while I now have several other blog posts jostling for position in my head, I've decided that this post is better late than never.

I was really lucky to be picked out of a hat and selected as part of a 7-person UK contingent at Dx Amsterdam, which gathered 21 bloggers from the UK, Ireland, Netherlands, France, Germany, Spain, Belgium, Poland, Greece, Sweden and Turkey in the wonderful city of Amsterdam for a weekend of friendship, conversation, shared experiences, learning, support, wobbly bike rides, and the dreaming of dreams.


There were lots of opportunities for us to chat and exchange experiences together over the weekend, and just like the Dx event I was lucky enough to attend in Stockholm there were useful and inspiring presentations - from practical things like taking better photographs, to the astonishing and humbling story of Claire Lomas and how she adapted to life paralysed from the chest down.

Mercifully, Abbott are careful at these events not to bombard us with announcements and product news - it's really more of a chance for us to learn and grow together as bloggers and to make connections across international boundaries. However once you've got some real actual Abbott peeps in a room, there are inevitably questions you want to ask and things you want to find out. For the UK folks, there was a brief breakfast meeting on Sunday which included updates on the tantalising prospect of getting the Freestyle Libre available on prescription on the NHS, which seems to be creeping ever closer (including a new campaign by Diabetes UK as the discussions and tortuous process seem to be nearing a final decision). It is interesting that the Libre is already fully or partially reimbursed in 9 countries across Europe.

But the thing that my mind keeps returning to following the weekend was the presentation of analysis Abbott have done on their anonymised real-world data which Tim gave on Saturday afternoon.

As Libre users may (or may not!) be aware, when they connect their reader to the computer to access the PDF reports and swanky graphs a de-identified anonymised copy of their data is also uploaded to Abbott. I remember some people being a bit huffy about that early on, but if I'm honest it has really never bothered me, as long as the data is completely anonymous (which it is) I don't mind Abbott having a set of my random BG craziness to see how their gizmo is working out in the real world.

And it is an absolutely massive dataset, almost 400 million data points from 55,000 users over 20 months.

What I found really interesting was some of the observations Abbott were able to make by analysing and filtering the data.

Average scans per day
The average number of scans per day per user is much higher than they had originally imagined. On average Libre users check their glucose 16 times every day. 16 times! A number of checks that would be unsustainable, or at the very least very uncomfortable and tiresome with traditional fingersticks. Additionally, while there are a few people that hardly scan at all, there is a real cluster at that 16x a day level, and many, many users who check between 20 and 30 times a day or more.


More scans associates with better outcomes
Abbott were also to stratify their results and confirm that people who scan more often are more likely to see reduced glucose variation when compared to those who scan less frequently. There are also observable improvements in the three biggies: reduced hypoglycaemia, reduced hyperglycaemia and increased time in range.

What about HbA1c?
Well, of course, the truth is that because of the way these data were collected no one can really know for certain (though there are plenty of anecdotal accounts from people who report their HbA1c reducing alongside Libre use). But I still find the data compelling. After all HbA1c is really only a proxy for glucose management, average blood glucose and time in range. The very things the Abbott real-world data is actually collecting.

At the moment HbA1c tends to be the focus of many academic/research studies at least in part because it is relatively easily collected, standardised, and has a long history going back to DCCT analysis that offers the promise of reduced complication risk. It also makes it easy to compare multiple studies by using the same HbA1c outcome. But I know I'm not the only person with diabetes to know that A1c is often a pretty poor indicator of what is actually going on day-to-day, and that the number you get does not always reflect the average BG or variation you are seeing.

I am aware that some will see these 'real world' data gathered by Abbott as a poor relation when compared to a 'proper' randomised controlled trial. There is no proper structure, no control group, no baseline data, no monitoring and observation of what is going on, no assessment of the relative education and support (or otherwise) of participants. But actually I think personally that is exactly what gives these data their real power. These are the numbers of ordinary individuals at all different stages of their diabetes journey, living messy, complicated real lives with type 1 diabetes. The only common factor is that these people wanted more information to support their diabetes management - and the more information they had, the better they were able to manage their blood glucose.

In a sense, of course, this is a self-selecting group. People had to be interested enough, and committed enough to fund the use of the sensors for as much of the year as they could manage. And people who couldn't get on with Libre are likely to have dropped out - but drop-outs and careful selection happen in clinical trials too. So while I don't for a minute imagine that chucking Libre sensors around like NHS-funded Smarties will instantly solve all the T1 diabetes woes in the UK, I do find these real-world data very encouraging and empowering.

Living with type 1 diabetes is complicated. And for many people, additional information about what their BG is doing 24 hours a day can go a long way to help them make better management decisions.

Disclaimer: Abbott Diabetes sponsored my attendance of Dx Amsterdam including flights, accommodation and the programme they organised. They also treated us to lovely meet-and-greet nibbles on Friday night and a slap-up meal on Saturday evening at Amsterdam's Van Pufflen restaurant. I was not paid to attend and I have not been asked to write this or any other post about the weekend or the Freestyle Libre.

Posted by on Friday, 19 May 2017

More than Diabetes, 4 minutes of Marvin - DBlog Week Day 5

Today is the last day of Diabetes Blog Week, and the prompt is an invition to share something non-diabetes related - "an interest, hobby, passion, something that is YOU... because there is more to life than just diabetes!". Huge thanks again to Karen at Bittersweet for organising such an inspiring week.

I read the topic list at the beginning of the week and really had no idea where to go with this one. But as I wandered out this morning, in glorious sunshine with our wonderful, affectionate, friendly, beautiful dog, I could think of nothing better. Huge apologies to anyone whose toes are already curling in that someone-over-sharing-pictures-of-their-children-on-Facebook way. But here it is...

We got Marvin a little over a year ago, and he has had such a massively positive impact on all of our lives. He's a medium sized cross-breed, mixing Clumber Spaniel with Miniature Poodle, to make a 'Clumberdoodle'. He motivates me to get out and about every single day - any time I meet my notional step goal target for the day is down mostly to Marvin. He is playful and affectionate, but not annoyingly so. He likes a snooze and loves people, children, and other dogs. He knows just when to snuggle-in, if you are feeling frustrated or down, and as our youngest pointed out not so long ago, having Marvin ensures that each of us will laugh out loud at least once every, single, day.

It is almost impossible now to remember life without him.

And since a picture is worth a thousand words, and a video is made up of thousands of pictures viewed one after another to create the illusion of movement*, I have chosen to produce a short video to give you 4 minutes of Marvin. Enjoy!

* One for the Wittertainees there.


For other posts on this topic, check out the Day 5 link list.

4 minutes of Marvin

Posted by on Thursday, 18 May 2017

Diabetes, emotions, resilience and mental health - DBlog Week Day 4


Today's Diabetes Blog Week topic recognises that living with type 1 diabetes is not just about looking after our physical health,  "What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?". Read how others have responded to this topic by visiting the Day 4 link list.

Today is also described as 'Throwback Thursday' in that this topic was also covered a few years ago, in 2014, which coincidentally, was the last time I took part in DBlog Week. You can read my previous post here, and to be honest I think I feel pretty much the same today.

It's important for us to recognise that living with a long term condition, particularly one as fickle, irritating and contrary as Type 1 Diabetes makes each of us more vulnerable to depression.

It is OK not to be OK. And it is very much OK to talk to your clinic, Doctor or care team about it. You need to do that. It won't be easy. It will take courage, but if you are struggling emotionally you deserve to be supported and to receive the help you need.

Many of us are familiar with the ebb and flow of emotions from gently pottering along with diabetes just being part of the background noise of our lives and with a general sense of well-being set against feelings of despair, hopelessness and that diabetes is a weight that simple cannot be carried. Many of us too, will know that the dividing line between those two states is sometimes precariously fragile. Your mental health is just that, health. We need to look after ourselves as whole people, and that means looking after our minds, and paying attention to them, just as much as we put effort in to blood glucose management, eating well and exercising.

I think part of the challenge for healthcare professionals is that it is much easier for them to focus on the numbers. The hard facts that can suggest how 'well' a person with diabetes is managing their condition. From the outset we begin to be surrounded by a cloud of numbers, targets and measurements. Each supposedly able to predict our long-term future health. And it is almost impossible in that context not to see those checks and data as some sort of reflection on whether you are 'succeeding' or 'failing' as a person. Whether you are 'trying hard enough', 'doing well enough'.

It's a toxic environment.

And much has been written about the language we use in relation to these pieces of information. Test. Target. Control. Compliance. Adherence. So many opportunities for self-judgement.

And it's important to remember that fluctuating glucose levels have a profound effect on the brain and on the emotions. So at the very point we see those frustrating numbers, where we know we did everything we knew to try to avoid them, our minds are less able to cope with the situation.

If we are not careful we put ourselves in an impossible position where every day is filled with opportunities for perceived 'failure'. Where we see our best efforts as never 'enough'. Where we feel that we are failing before we begin.

But this is absolutely not the case.

You need to recognise how well you are doing. How resilient you are. How you are able to live your life and simultaneously perform the function of a major bodily organ every single day.

Some times it works well and you are happy with how your BG behaved, other days... not so much. But you battle on, you brilliant, tenacious, feisty, beautiful piece of humanity. And tomorrow you will do it all again.

And make no mistake, the juggling of all those complicated factors that go into every single one of your self-management decisions would fry the most genius of minds. And the out of range results you see are so often not even down to you at all. Well, OK, that one was. But hey, we knew that before we did it eh? And life is for living, right? But for the most part, if managing type 1 was simply a matter of eating the right foods and taking the right doses and everything always worked out all the time and never changed we would have had this licked a long, long time ago.

The variables in your life will overlap and interact. Some cancelling each other out, others magnifying. And your diabetes itself will not have the good grace to sit still and behave predictably.

Perfection really is not possible. You are doing your best - even on the days when you can barely manage to do anything. You can do that. You can keep yourself going. And tomorrow you can go again.

Never neglect your state of mind. Get the right professional support if you need it, and reach out to people in the #doc to share the burden. Commit to being careful with your own inner voice and taking time to affirm yourself and acknowledge that despite the difficulties type 1 diabetes brings, you are winning small victories every day. You are able to achieve more than you can imagine.

“To achieve greatness, start where you are, use what you have, do what you can.”
Arthur Ashe

Posted by on Wednesday, 17 May 2017

The Blame Game - DBlog Week Day 3

Today's topic in Karen at Bitter-Sweet's fabulous festival of Diabetes Blogging is entitled 'The Blame Game' - Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger... For other posts on this topic, browse the day 3 link list.


While I have been on the receiving end of a handful of less than ideal conversations with clinicians and healthcare professionals over the years, those were not the ones that first came to mind when I read this topic prompt.

There is a person who seems to jump on my back and berate me for lapses in judgement and effort far, far more often than any Dr or nurse ever has. Someone who feeds me with visions of horrendous complications that might be in store. Who raises a cynical eyebrow over my dose estimation of a meal, or timing of a bolus. Who reminds me of eveything I missed, every emerging pattern that I didn't spot until reaching for the hypo treatment. Who rolls their eyes over some of my food choices, making muttering noises about it "really not being a brilliant idea". Someone who is all too quick to tell me that my best isn't good enough, and that I may as well just give up.

And the worst thing about them? The very worst thing is their timing.

They choose the times when I am feeling at my most vulnerable. My weakest. Where my diabetes is behaving erratically, and I am struggling more than usual to aim for the tiny target range that we aspire to. That narrow way that is the best hope we have to protect against long-term complications. They choose the periods when either repeated high or low blood glucose have left me feeling drained, or scared, or angry and irritable. Uncertain as to what to do next, which of the many factors might need tweaking. And it is at those moments - when I could really do with some support, that they choose to get on my case.

I've tried to speak to them about it. We have had long conversations and have agreed that their behaviour really isn't kind and isn't helpful. I felt like they really genuinely were going to try. But all too soon they fell back into their old habits. Next time... next time they promise they will try harder. But will they? Can they?

If they weren't so close to me I would have left them behind. If they weren't so important to me I would have cut ties. Moved on. Freed myself from the negativity that comes when I can least cope with it.

But it's difficult. It's difficult when they are hurting too. When they are struggling.

It's difficult when they are, in fact, me.

So we embrace one another again. We look ourselves in the eye. And commit to being kinder the next time. To support each other, no matter what. To love. To listen. To understand that we are both doing what we can. To know that we will make it through together.

Posted by on Tuesday, 16 May 2017

The Cost of a Chronic Illness - DBlog Week Day 2


Today is Day 2 of 2017's Diabetes Blog Week and today's topic is entitled The Cost of a Chronic Illness. For a wider perspective on this topic head over to the Day 2 link list.

I have read a lot of anguish, rage and despair from people living with diabetes in the US in recent months as insulin manufacturers increase prices again and again. The costs involved are simply eye watering - the latest 8% price hike by Eli Lilly earlier this month puts a single vial of Humalog at approximately £213. That's a 290% price increase over the last decade. I mean... really?!?.

Having read some powerful early posts from Aussie bloggers on today's topic (here, here and here) I know that diabetes can be an expensive business 'down under' too.

Not to mention the many, many parts of the world where access to insulin is even more difficult and costly. Where type 1 diabetes is still potentially a death sentence, rather than an irritating, but generally relatively manageable condition. I am so pleased that charities such as T1 International work so tirelessly to support people living with type 1 diabetes anywhere in the world where insulin and test strips are unaffordable, unavailable, or both.

I feel extraordinarily lucky to be living in the UK, where I can receive world-leading diabetes care free at the point of delivery.

Today's topic drew this famous National Health Service (NHS) quotation to mind:
“Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community”

Aneurin Bevan - founder of the NHS

What an amazing sentiment that is. How far removed from so much of what we see going on in the world today.

And it makes me realise why we in the UK are so proud of the NHS, and why we fight so hard to protect it, with all its frustrations, foibles and oddities.

There are a lot of people who are profoundly worried about the NHS in the UK at the moment. Funding is a real challenge, and has been squeezed and reduced in real terms for years. With an ageing population often with more and complex combinations of illness providing ever-increasing demand. Our current government (who look likely to be elected to a further term in a few weeks) seem perilously likely to be the sort of people who might change the NHS out of all recognition at any moment - breaking it up, selling parts of it off, introducing co-payment and/or insurance-based models under the guise of 'saving it'.

4 out of 5
My experience in helping to put together the NICE Guidelines for adults with type 1 diabetes in the UK gives me much food for thought here too. But unfortunately, not much in the way of answers of brilliant ideas. In the diabetes online community there is often frustration vented about the difficulties in accessing the latest shiny technology - which begins to sound like petulant toddler foot-stamping in comparison to the challenges faces in other places in the world. I am one of a relatively small number of people in the UK who self-fund continuous glucose sensors. I only manage to cover around half of the year, but it helps me enormously. My insulin pump, cannulas, test strips, insulin, appointments, blood tests, eye examinations, toe tickles and all the rest are fully funded by the NHS, either because they just are (imagine that!) or because I meet the NICE criteria which has demonstrated that they will be 'cost effective' for me. They will provide good use of NHS funds. The numbers have been crunched, the research examined, and the right ticks are in the right boxes.

This makes me feel simultaneously extremely lucky and, if I am honest, really quite guilty when I hear about the monetary investment you, dear reader, may be making somewhere else in the world. I know how much I wince when I buy a couple of sensors.

But these ongoing every-day 'maintenance' costs of living with Type 1 to the NHS are only the tip of the iceberg. A mere drop in the storming, swirling financial ocean.

One uncomfortable fact is that of the entire budget spent on diabetes in the UK fully 80% of it goes on the other stuff that we'd rather not think about. The costs of medication, appointments, pump and consumables only make up a trifling £1 out of every £5 the NHS spends on diabetes. The really, REALLY expensive stuff, is when diabetes nasties come knocking at the door. When people develop problems with eyes, nerves, kidneys, feet or heart. Admissions, surgery, follow-up care. And if the financial cost of those things were not bad enough - they also come with a huge human cost too.

And modern medicine is getting so good at treating type 1 diabetes these days that our life expectancy is closing on people with functioning pancreases. Giving us all the more time to potentially develop the long-term complications that cost so much.

So it is down to us, who live with long term condition like diabetes in the UK to honour the investment the NHS so freely makes in us. To do everything in our power to live well with diabetes and avoid complications if we possibly can. To take up the offered (FREE!) education courses to improve our self-management. To attend our annual screening appointments which cost us nothing but a few minutes of our time. To learn as much as we can, and to keep chipping away at our results to try to improve our numbers where we can. To aim to avoid complications if it is within our power to do so.

To live long, healthy lives alongside type 1 diabetes.

Posted by on Monday, 15 May 2017

Diabetes and the Unexpected - DBlog Week Day 1

This week sees the eighth Diabetes Blog Week - an amazing festival of healthcare blogging organised by the wonderful Karen of Bittersweet Diabetes. Wow! Eight years - that's quite an achievement. I've taken part a few times before, and it is always an inspiring week seeing so many writers coordinated to post on the same topic each day during the week.

Today's topic is 'Diabetes and the Unexpected, so without further ado, here are my top three:

1. Overnight unexpectedness
You know the ones... You've not run a marathon after lights out. You've scrupulously counted your evening meal. You've not had a skinful of booze. Your doses and basal are properly tweaked. Your Insulin on Board is right down at zero. Everything was fine last night. And the night before. But not tonight... Tonight is an unexpectedly-needing-far-far-less-insulin-than-normal night. Whatever 'normal' happens to mean for you right now. But you know what? It's not you. Not this time.

Closed loop studies have shown a big variation in overnight insulin requirement. So keep trying, keep dodging all the lows you can, with all the preventative strategies for lows you know (especially the overnight ones)... But this one? This one is just down to your diabetes being annoying. Don't beat yourself up about it.

2. Unexpectedly nailing it
Mostly diabetes just potters along in the background for most of us. Like irritating lift music. Frustrating, relentless, occasionally intrusive, but for the most part... just there. Absorbed into the everyday rhythm of things. Sometimes it barges right into centre stage of course. Really causing havoc and dominating everything, emotionally and physically. But not for the most part. Not in my experience. So I always find it rather unexpected when this neverending gently annoying part of my life causes me a genuine sudden burst of happiness. Like a golfer sinking a hole in one. A runner smashing a PB after injury or in difficult conditions. A fan watching their team win the cup, or league, or the local derby.

So the next time you take on your food nemesis* SWAG bolus and absolutely nail it give yourself a moment. Celebrate your amazing skill, intuition and ninja-bolusing skills. Look around and enjoy the view from up there. Store it up and remember it the next time your diabetes throws a curve ball with something you have eaten without problems a hundred times before. Smile a big smile and bask in the glory of your magnificence.

* Mine is probably buffet party food, though evenings at an all-you-can-eat restaurant run that a close second. Yours might be pizza, or pasta. To be honest I gave up on breakfast cereal a long time ago, or that would be right up there.

3. Unexpected connections
I was diagnosed with type 1 over 25 years ago. Everything about it was unexpected at the time. I remember knowing absolutely nothing about what diabetes was, and how it would change so many things about my life. Wondering whether I could eat honey, instead of sugar, because... well... honey was natural right? But what I could never have anticipated - the most unexpected thing of all was... well... not to put too fine a point on it - you lot.

The connections that it would bring. The people I would meet in real life and feel an instant bond with. The sense of shared struggle. The feeling of a support network that stretches, quite literally, all around the world. The way it would help me to empathise with others living with long term conditions. The way these connections would help me to grow as a person. To perhaps become more than I would have been without it. Don't get me wrong, I'm not one of those "I love having diabetes, it has been the making of me" people. But if there is a silver lining to living with this infuriating, illogical, relentless, draining, and occasionally debilitating condition, then you guys are certainly it.

And Diabetes Blog Week is a brilliant reminder of that.

Thanks for reading!

There are lots more posts on this on the Diabetes Blog Week link list.

Medtronic Guardian Connect Review - iPhone CGM in the cloud

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Posted by on Sunday, 7 May 2017

Running 10Km with Type 1 Diabetes


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

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

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

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

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

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

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Posted by on Friday, 5 May 2017

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

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

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

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

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

Don't say you haven't been warned.



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

Posted by on Friday, 28 April 2017

Guardian Connect in Amsterdam and #TADtalk2017


Last weekend was a crazy whirlwind of diabetes-based shenanigans! I was already looking forward to #TADtalk2017, 'Talking about diabetes' having missed the first one last year I made sure I reserved my place as soon as I was able. It looked like a brilliant chance get inspired by some fantastic speakers and to meet in actual real-life with many people that I have 'known' for years, but only as 32px square avatars and 140 character encouragements. Plus a chance to catch up again with some of the others in the #doc that I've already had the good fortune to meet up with. Altogether, not one to be missed!

Then, out of the blue I received an invitation to attend Medtronic's second 'Diabetes Community Exchange', which was to be held in Amsterdam over the same weekend. Fortunately I was able to go to the main part of MDCE, on Friday and return early Saturday morning just in time for #TADtalk2017.

I am planning to post a more detailed account of my experiences with Guardian Connect, as I'm only a week in. But so far, so interesting. It's a standalone CGM, that does not link with any current UK Medtronic pump, but what it does offer is the display of your sensor glucose readings directly on your iPhone in the Guardian app, along with an automated upload to Carelink in the cloud, which means you can grant access to your BG data to partner/parent/friends/family, who can make sure you are safe.

For now though I just wanted to post a brief video montage of my weekend to give you a flavour of what went on, including a fascinating trip to the Diabeter Clinic in Rotterdam, where we went to get kitted up with our Guardian Exchange CGM.

Diabeter
Diabeter is a specialist independent diabetes clinic which has been running since the 1970s. Their headquarters is in Rotterdam, with 4 centres in total. Diabeter is recognised as a top centre for diabetes care and research. Medtronic acquired the clinic in 2015, but I'm not sure what if any influence they have over its running - Diabeter certainly retains its clinical, brand and therapy independence.

We were able to have a brief tour while we were there and the friendly and genial Dr Aanstoot talked us through some of the innovative approaches that define the Diabeter style.

I was really impressed by the patient focus in everything they do. And in their adoption of new technologies and ways of delivering care, including a weekly 'Facebook Live' question-and-answer broadcast which is being enthusiastically adopted. The look and feel of the place if very much 'non-medical' and could be a smart advertising agency office, or cool apartment depending on where you look. Light, airy and a great sense of space and calm.

Increasingly they find that people with diabetes increasingly value ad-hoc contact via video call or telephone in preference to regular calendared appointments, though you can also go in for a conventional face-to-face meetings if that is your thing. They have their own data management system which can accept information from any of the 'usual' upload systems (Diasend, Carelink etc) and which then crunches your data into something usable and understandable. And once you have got used to the reports, they always stay the same - even if you change your diabetes technology. The reporting system can analyse your data and alert you if it spots patterns that may need your attention, or flag things up so that the clinic can approach you with a, "How are things going?" conversation - again this is a preference you can agree with the clinic.

It was great to hear that they have an experienced diabetes-specialist psychologist on hand if you need that support too.

There were lots of small details which stood out, including this in one of the 'family rooms'. "We use round tables" said Dr Aanstoot gesturing in through the glass-partitioned doorway. "Much less confrontational. We don't want to be Dr on one side telling you what to do, with the family on the other. We want to be working together."

Catching up and first impressions
It was a great opportunity to be among a group of diabetes bloggers from all over Europe, and as far away as Dubai. Both people living with diabetes and a parent of a T1 child. Sara, from Sweden, who manades her diabetes with MDI had been wearing the Guardian Connect since February. A couple of others, myself included, were wearing MM640G with Enlite sensors and were watching to see how the traces compared. For others, this seemed to be their first experience of continuous glucose monitoring. We had dinner and chatted long into the night, as people with diabetes often do. It was perhaps a slight error of judgement to find myself drinking Talisker with Kevin from Belgium, along with Bastian and Richard of #DEdoc fame until passed midnight and with a 5.20am taxi ahead of me - but I was glad to be able to make the most of my short time in Amsterdam.
Pictured: Lovely Medtronic and Diabeter peeps, plus Kevin (Belgium), Sofiane (Switzerland), Sara (Sweden), Mel (UK), Lisanne (Netherlands), Christophe (France), Richard (Germany), Oscar (Spain), Abdullah (Dubai), Bastian (Germany), Dr Aanstoot (Diabeter) and Angel (Spain).

The Medtronic Diabetes Community Exchange event continued on Saturday, but Melanie Gray (Stephenson) and I had to bid a sad farewell as we hurried back for TADtalk in London. Though it has to be said that Mel made a considerably better choice for return flight time, and was able to stay for breakfast at the hotel.

Huge thanks to Mireille (sp??) and Aurelia (sp?!) and the others from Medtronic  and Diabeter whose names I cannot remember (sorry!) for making the event so enjoyable and informative. It was an honour and a pleasure to be there.


TADtalk2017
I was really looking forward to TADtalk, having seen such inspiring coverage on social media last year. Suffice to say it more than lived up to my expectations. Brainchild of Dr Partha Kar, Dr Catherine Peters and Prof Peter Hindmarsh that sprang out of a conversation in the back of a taxi, TADtalk (Talking About Diabetes) brings together inspirational speakers who share their experience and insight into meeting and overcoming the challenges that living with type 1 diabetes can bring. The talks themselves are videoed and distributed freely, as were last years, so do go and check them out.

This year's TAD Talk was smoothly hosted by safe pair of hands and everyone's second favourite T1 newsreader, Stephen Dixon, and the avalanche of tweets was storified by Diabetes UK. The glowing lineup of speakers included Sir Bruce Keogh, Miss Jen Greaves, Gavin 'Diathlete' Griffiths, #gbdoc's cat lover of choice Adrian Long, Roddy 'insane artic marathon challenge' Riddle, Mel 'international athlete' Grey, and not forgetting 'head of all the nurses and under-the-radar T1' Jane Cummings. There are some great blog posts that describe TADtalk2017 in more detail. See type1bri.com, type1adventures, Mel Stephenson, Adrian Long, and circles-of-blue for examples.
My overriding impression in the train on the way back was one of being uplifted, supported and encouraged. Having a whispered conversation with Mel Stephenson and top Jelly-Baby organiser @type1hurdles all the way back, having only met earlier that day.

Everyone involved should feel rightly proud. And if you get an opportunity to go to one, I would thoroughly recommend it.

Watch my weekend fly by


See more video noodlings on my Youtube thinghy.

Disclaimer: Medtronic paid my travel and accommodation to attend MDCE, and laid on a tasty dinner in the evening. I was also offered a free trial of the Guardian Connect for a month. I have not been paid to write this post or any post, and any opinions on what is good or bad about the technology are mine and mine alone.