Posted by on Friday, 30 December 2016

T1 Resources - a long overdue blog post

As is almost inevitable at this time of year I've been finding myself reflecting over the last 12 months in recent days.

I'm hoping to post something as a bit of a 'look back - look forward' in the next day or two, but wanted to give this long-delayed post about T1 Resources some room of its own.

T1resources.uk is a website that acts as a gateway to rated, reviewed and reliable online resources and peer support that can help people self manage their type 1 diabetes.

Some of you may already have stumbled across what I had been describing earlier in the year as 'Project Enormous' but for those that haven't it was an idea that grew out of a conversation that a few people had at 'Talk T1' an event that Partha Kar put together in Southampton in January last year to explore new models of care for type 1 diabetes.

The idea particularly resonated with me and it was something that I wanted to be part of because it was something that Dave Sowerby and I had discussed many times before. We have both been living with type 1 diabetes for many years (he since childhood, me since my early 20s) and we found each other during the early rapid growth of what gradually became #GBdoc. Without wanting to speak for Dave, I think it's fair to say that we both had a very positive experience of meeting other people online after years of relative isolation. The sharing of experiences, insight, suggestions, the understanding of the common struggles and frustrations, along with pitch black humour had a profound affect on me. Time and time again I would say, or hear someone else say, that they learned more online in 6 months than they had in the previous 10 years at clinics. Or that they *finally* felt they had people around them who understood what they were going through, based on lived experience rather than textbook theory.

But the question always remained - how could those positive effects be spread to a wider group? As a proportion of the 400,000 or so people living with type 1 in the UK, those connecting with each other online was clearly a miniscule fraction. And part of the nature of these blossoming interactive communities is that they can at once look impenetrably complex and full of well established groups and relationships. Finding a way in can look a bit daunting - even if you know there is something there to be found.

Add to this the complexity that some stuff on the internet is really useful, helpful and good, while other stuff is, not to put too fine a point on it, utter nonsense, and the challenge becomes greater. Particularly when you hear people expressing the wish that this stuff should be available on prescription, or at the very least be suggested to those newly diagnosed by their clinic or doctor.

But how could a doctor recommend something so intangible? What if the stuff people first happened upon was hopelessly inaccurate, dangerous or just dreadfully waffly. Perish the thought - someone might stumble upon these ramblings - surely all hope would be lost!

Wouldn't it be good if there was a place where you could find the 'good stuff'. And know that it had been checked by both doctors and 'real' people with T1.

And so, some of us living with type 1 diabetes who were connected to the diabetes online community, and some visionary healthcare professionals who could see the positive impact that peer support and social media interaction might have as part of a person's diabetes toolkit got together and made it.

What is T1resources.uk?

Put simply it's a starting point. A way in. A collection of blog posts, YouTube videos, websites and all manner of other content that have been reviewed by both a person living with type 1 diabetes and a qualified HCP. These are categorised and classified to make them easy to find and should give you a decent starting point if you are looking for information about any aspect of living with type 1 diabetes. And because everyone is different and wants different things, you can filter to only see stuff in particular formats (eg blog posts or videos), or that comes from particular sources (NHS, JDRF, DUK etc). If you know of something really helpful that is not listed you can suggest it. If you think something on the site is particularly useful you can rate it (or leave a comment) so that others who visit can see what people are finding helpful. For those who are venturing into Social Media for the first time there are brief details of what each channel offers and what to expect, along with advice about staying safe when looking for healthcare information online.

The site soft-launched in September and continues to grow and develop. It is great to see more people creating accounts and expressing opinions by rating and recommending resources. I had always hoped that there would be some community involvement as part of it. Best of all the reception among healthcare professionals has been amazing. I have been fortunate enough to be invited to speak at a couple of events during the year (more on those later) and whenever I have mentioned T1resources.uk it has been warmly welcomed with people asking for cards and details to pass on to people in their clinics.

I am hoping that the site continues to help people over the coming years.

Huge thanks to Sophie Harris, Pratik Choudhary, Kev Winchcombe, Laura (Ninjabetic) Cleverly and of course Partha Kar for their help and support and without whom this project could absolutely not have happened. Would be great to hear what you all think of it.

Visit: www.t1resources.uk

Posted by on Saturday, 19 November 2016

Facebooking my diabetes for #WDD2016


Monday this week was World Diabetes Day. It's is one of those made-up things that come around every year and hope to raise awareness of something or other - World Sparrow Day... International Day of Happiness... World Toilet Day... One of my own favourites is 'International Talk Like A Pirate Day', but I digress... Aaaaarrrrrrrrr!

World Diabetes Day is held every year on November 14th, good ole Freddie Banting's birthday (one of the guys who was instrumental in the discovery of extracting and using insulin in diabetes treatment). It was nice to see a WDD themed Google Doodle make an appearance, something that us pancreas-impersonators have been asking for for many years.

A few years ago, inspired by something I saw on Twitter from Scott Hanselman, I decided to document a day's-worth of diabetes interactions on Facebook as they happened. People seemed surprisingly interested, and so having given them a few year's respite I thought it was time to Facebook my diabetes again. Here's how it went...

06:22 
Slightly early start to the day but the routine is the same. First thing, even before kettle goes on is to check blood glucose level. Make small hole in finger, squeeze out drop of blood and apply to test strip. Result: 8.3. Ideally this would be between 5.0 and 7.0. Give insulin for breakfast. Estimate single slice of toast as 15g of carbohydrate (12g for the bread, 3g for a dab of marmalade). Insulin pump suggests 1.3 units of insulin for the carbs, plus 0.6u to correct the slightly high BG level. In addition I also need an extra 1u for my liver releasing extra glucose when I get up (part of the body's Circadian Rhythm). Dose delivered I will now wait at least 30 minutes to eat breakfast.

Via comments:
Regarding the carb value of bread: I deliberately choose Burgen 'soya and linseed' as it is a) tasty b) slightly lower carb and c) relatively low GI

Regarding waking BG level: The official guidelines are 5-7, I think. The 7 is to give some wiggle room for a rise after eating. Usually pre-meal guides are 4-7, but at breakfast they make it 5, because regularly waking in the 4s is associated with increased risk of undetected nocturnal hypoglycaemia which can be a real problem. 

06:50
Check pump display to remind me when I had dosed for breakfast. I have been waiting 30 minutes to eat for so long I often instinctively get this right. I thought to check at about 28 minutes today which is about perfect. I need to leave a gap between dose and food because the 'rapid acting' insulin I use is not actually very rapid. I cannot afford getting distracted though as if I wait too long the insulin could start working before the food kicks-in and my BG levels could drop too far. It's a balancing act! 

07:17
Breakfast of champions. I have tried many things over the years but this seeded bread is fairly reliable for me (everyone's reaction to different foods is frustratingly and confusingly different). It has slightly fewer carbs than regular bread - 12g per slice vs the more usual 18g - and the seeds help to slow absorption. It is anything with carbohydrate that raises blood glucose levels, not just sweet things, so that's bread, rice, pasta, most fruit, anything made with flour, grains, root veg, and then all the sweet and sugary things too. My task is to match the carbohydrate I eat with doses of insulin. And then to match the speed of absorption of the food with the timings of the doses. I cannot hope to get that right all the time. But the lingering threat is that if I get that wrong too often I am at risk of blindness, heart attack, stroke, kidney failure, limb amputation (high levels) or unconsciousness, coma or death (low levels). Fun eh! Over the past 25 years I have spent more time thinking about the potentially disastrous outcomes of my efforts to manage my diabetes than is probably good for a person's mental health. 

07:57
Time to take this moppet out for a walk. Activity and exercise need more fuel than resting and tend to make insulin work more dramatically, so I need to allow for that, even when it's something as insignificant as a 35 minute wander. My insulin pump allows me to reduce my 'background' insulin level, so I am setting a 70% Temporary Basal Rate for 45 minutes. 


08:52
Back from dog walk, just checking to see how things are going. 11.5mmol/L. This is too high, it looks as though I could have done without the TBR I set (though tomorrow might yield different results even if I do exactly the same things). Ideally this should be no higher than 9mmol/L 2 hours after eating so I am adding .7u of insulin with the aim of getting me back to 9 and leaving the insulin already 'on board' to deal with breakfast as it continues to digest. 

09:14
It's 9:14 and I realise I have already forgotten to mention something. I had a shower, so I disconnected my insulin pump temporarily, capped the tubing and the cannula that is inserted, currently, on my back. After the shower I primed the tubing and reconnected. So many of these interactions are so automatic I barely even notice them any more. 

10:02 
WDD Update: (It's RELENTLESS isn't it?) 10am and feeling a little bit indigestion-y / dry-throated. This *might* be connected with my raised blood glucose levels, but my symptoms of high BGs are patchy to say the least. It is probably because I have just been thinking about it since breakfast and it's all in my head. Or maybe it isn't? Tempted to check my blood glucose level again, but the thought of another finger prick so soon after the others (and especially because I think it will be another high level) is not encouraging me. 

I am also feeling a bit hungry, but adding the complexity of something carby at this stage will just create even more confusion/uncertainty so I am having a handful of nuts and a cup of tea instead. It's not that I *can't* have a couple of biscuits - it's just that the mental effort, and potentially disastrous BG outcomes kinda drains the joy out of them.

Via comments
Regarding feeling hungry when BG is high: I think it's because you body knows you have fuel on board, but it also knows that the energy is trapped in the blood and not making it into the cells. So it asks for more fuel. Which potentially makes the problem worse. Which makes you hungrier. Rinse. Repeat...

The really REALLY irritating thing for me is that my clearest symptom of low blood glucose is ALSO 'feeling a bit hungry'. So every time I feel a bit hungry I have to work out whether my BG is too high because of what I've just eaten, too low because I've over-compensated or, perhaps, that I might be just 'a bit hungry'. Pah! 

10:40
My Twitter feed is ablaze with #wddchat16 today. A 24-hour curated international Twitter conversation with different countries hosting an hour and handing over to each other. Thousands and thousands of people connecting, sharing experiences and supporting each other. I find great support to help me manage my T1 by connecting with people online, but I am going to have to resist getting involved on Twitter today or I am *never* going to get anything done! 

12:30
Lunchtime beckons. As you can see, the carefully considered correction doses I have administered today have had absolutely no effect, even though all of those doses have now finished working (approx 4 hours). I am beginning to feel the sluggishness of high BGs emerge. Lunch is a 2 slice Burgen bread sandwich and an apple*. 25g carbs for the sarnie and allow 20g carbs for the apple, so 45g total. My lunch ratio is 1 unit of insulin for 11g carbs. Thankfully my pump can do the maths for me, along with calculating a correction based on 1u lowering my BG by 3.5mmol/L and the difference between my current BG and my ideal mid-range target. Confused yet? Dose for lunch is 4u, plus another 1.5u correction for the high BG. I will wait rather longer to eat this time, with the intention of being more in range before adding more carbs. A tricky timing challenge as the longer I leave it the more steeply dipping my BGs will be when I eat, and the food will take a while to get going itself. It can feel like trying to hit a perfectly weighted long-ball pass to a sprinting striker... in the rain... into a headwind. 

* I tend to eat the same things for breakfast and lunch week in, week out. Partly habit, but mostly to reduce the number of variables by sticking to things that have been 'fairly reliable' (Ha!) in the past. That way if results are not as expected I can discount carb-estimation and food-absorption-speed errors, and it becomes more likely that my insulin needs have changed again.

12:46
How long has that been? Ah. OK, my instinctive 30 minute recheck. Will leave it a while and BG check again.

Via comments
It must be exhausting being you: The thing is... I recognise how amazingly lucky I am to *only* have T1D to live with. And to live with it in the UK with access to insulin, tech and the unbelievably amazing NHS. If I'd been given a list of LTCs to pick from aged 21, it would have been a pretty good option.

13:12
Just checked again. #BGnow of 9.3 after a full hour. Not perfect, but it will have to do. If I don't eat now I'm likely to get too absorbed in what I'm doing and forget.

15:42
This is getting a bit annoying now. Walked to Coop without TBR as things have been running high and I'm still too high on return. If things were working I would already be back in range. Correcting with a further 2.5u. Pump recommended 0.7u as I still have 0.7u 'insulin on board' from lunchtime. Initially thought about 1.5u, but have added another unit. Essentially I am now dosing what I think is 'slightly too much' because 'enough' isn't doing anything. I will need to keep an eye on it towards eve meal time. Starting to feel a bit crabby/irritable.

Via comments
Could raised BGs be an issue with the infusion site? Good thought, Not sure though... Would expect a much more dramatic rise with a cannula fail rather than being held steady through subsequent meals. This just feels like walking the wrong way on a travelator. Have been expecting my basals/ratios to shift soon. Looks like this could be it?

Could it be degraded insulin, having got too warm?  No it's quite a fresh one. I will take a look at tomorrow's results and see whether it's a pattern or 'one of those days'

17:43
Yay! My first in-range result of the day. Must remember to change my insulin pump battery before I go out for the evening. Last thing I need is Threepio wailing away when I'm trying to play guitar.

17:56
Just prepping for evening meal. Here's my insulin pump working up the mathematics for the dose. Feel very lucky to have access to tech which can fine tune doses like this. And if I decide I want to up my insulin intake by 10% tomorrow I can adjust the settings and let it work out the new ones. My diabetes may not behave reliably/predictably, but at least I can wrestle it with some precision on one side of the equation!

19:54
Typical, just when you can't watch what is going on and just when you really don't want to dip low. Several handfuls of Skittles to the rescue. Don't want to repeat the brain-fog for the next lot of songs.

Via comments
Regarding hypo warning signs: The ones that sneak up on me at that level really scare me. I tend to get good signals at least between 3.5 and 3, this time I had lack of coordination and slight sweating as clues. Didn't get my more usual anxiety/hunger until on the way back up.

21:42
That's the thing about T1 diabetes. You really can't rely on it to behave consistently. Just when you have been running high all day, and without rage-bolusing for a meal you get an unexpected dip. I suspect a slight mis-estimate of carbs for my evening meal, and not quite enough of an insulin delay for noodles (some carbs take longer to hit my system and an insulin pump allows me to deliver the dose either fully or partially spread over a number of hours). Still surprised the handful of extra fast carbs I ate as a 'safety cushion' disappeared so completely. 

22:02
Another check, and as I half expected I slightly over-did the hypo correction. Always tricky treating a hypo when you have insulin active, and when you don't want to risk a double-dip. I added a 30 minute 0% temporary basal rate just in case. Looks like a few Skittles too many. Another correction delivered. Not my best day of BG control. But not my worst either!

23:36
This is the last of my posts as part of World Diabetes Day. I waited up to allow that last correction to settle in. 

In Sesame Street style, today has been brought to you by 9 blood glucose checks, 110g of carbs, 29.475 units of insulin (40% background, 60% meal/correction). Just an average day with T1D (with above average BG levels). 

Now wake up tomorrow and do it all over again. And the next day. And the next. And the next...


 

Posted by on Wednesday, 26 October 2016

Guest post: Lessons learned from insulin pump breaks

Guest post from 'Big Purple Duck'.

I was diagnosed with type 1 diabetes aged 3. Type 1 diabetes is an autoimmune condition in which the immune system attacks the insulin-producing cells of the pancreas. Insulin is a hormone vital to the process of transforming the food we eat into energy. Without it, death is certain. So in the absence of a fully functioning pancreas, those of us with type 1 need to take insulin on a daily basis to prevent our blood glucose levels becoming dangerously high.

For 15 years I managed this condition with daily injections of insulin. Then, 8 years ago, I started using an insulin pump. A quick look at some other type 1 blogs will soon find you the benefits of an insulin pump over injections. While it’s not for everyone, I have found it much more effective in managing my blood glucose levels. However, I have in the last 18 months taken 2 breaks from pumping and returned to multiple daily injections (MDI) for roughly 3 months each time. Here are some of the things these breaks have taught me about type 1, pumping, and life with diabetes.

1. Pumping is still better.

I have found the breaks helpful in reminding me why I started pumping in the first place. Using an insulin pump can be much more intensive than injections, and it can be difficult to stay on top of things. Switching back to MDI gave me a break from this intensity, but fairly quickly on both occasions the swinging blood glucose (BG) reminded me why the intensity on the pump is worth it. BGs are much more stable, life is more flexible, and on the whole I feel much better.

2. Pumping is, however, the lesser of two evils.
There is, sadly, no magic fix for diabetes. It’s a difficult condition to live with, no matter how you manage it. Pumping can be intense and throws in some extra variables. (Is my site working? Has the tubing blocked?) But MDI is more inflexible and causes me more hypos (low blood glucose). Neither is perfect. You’ve just got to pick whichever one works least awfully for you.

3. Pumping is less scary.
After I got into the swing of things with the pump, and before I took any breaks, I had a permanent, vague anxiety about what the hell would happen if my pump stopped working and I was forced to return to MDI until I got a replacement. This anxiety has now gone. I know I can manage things on MDI, I know roughly what doses I’d need, I know what works for me on MDI and what doesn’t. And so there is less pressure on pumping. If I’m having a nightmare with infusion sites and just can’t seem to get anywhere with it, I know I have a fairly comfortable MDI regime to fall back on.

4. It’s not all or nothing.
Before I took a pump break, I was absolutely horrified when I started to have a site or absorption problem. I’d keep taking correction doses on my pump, see my BGs keep increasing, and panic. I’d keep on fighting this battle until I got a site that worked (and then my BGs come crashing down, obviously). Now I approach high BGs a little differently, and allow injections to help me. One of the huge benefits of injections is that I have no doubt that the insulin dose went in. So when I’m faced with a high BG now, whether I suspect my site is problematic or not, I correct with an injection. This always brings me down quicker than a pump correction (I’m still theorising on why that is). It allows me some breathing space – I know the insulin has gone in and will start to bring my BG down, so I can focus on finding the cause of the high. When I do change my site, I’m much less anxious about it because I know injection corrections will see me through if the site doesn’t work.

5. I’m more flexible about balancing my diabetes with life.
Sometimes I’m quite happy to put in the effort of BG checks 8 times daily, checking basal rates and changing sites because it leads to better BG control and generally better health. However, sometimes life gets pretty crazy and I’m not able to prioritise my diabetes like this. Before my first pump break I would have got very upset about this conflict and found myself heading straight for diabetes burnout. However, now I weigh up the option of going back to MDI again for a period until things are calmer and I feel more able to put in the hours required of the pump. In fact, I’m considering MDI for the Christmas period this year so I can ease up on testing and thinking about it so much. And so I actually resent my diabetes less, because I feel able to put it on the back burner with MDI when I feel I need to.

6. Insulin is amazing – method of delivery is fairly irrelevant.

The above is an image that has always stuck with me since first I saw it – a young boy with diabetes just before the discovery of insulin, compared with the same boy three months after starting insulin treatment. It’s horrifying to think that there are people with type 1 diabetes the world over without access to insulin, or struggling to afford it (see #insulin4all). Fundamentally, insulin is the key to life for us – and I am exceedingly lucky to have access to it without concerns about financing it, thanks to the NHS. So while neither pumping nor MDI are ideal, and while I sometimes find it difficult to decide which works better for me at a given time, what matters is that I have insulin and my health. The rest of it can be figured out.

Posted by on Tuesday, 25 October 2016

Night-time nonsense. Perfection isn't possible.

The darkest hour, just before dawn, yesterday
I stumbled across this little bit of research again today. And while I know I had clocked it in the past, and was aware of it - this time it came as a huge relief.

I have not been feeling altogether cheery about my diabetes of late. Off and on for something getting on for a year I have been feeling more than usually grumpy and disheartened about it. I have written (mercifully few) ranty grumblings about it every so often. Partly driven by a couple of clinic appointments where I somehow managed to spend the weeks before and afterwards twisting and distorting either real or imaginary conversations into spirals of judgement, impossible requirements and self-destructive behaviours. Quite reasonable and well handled suggestions suddenly becoming a cloud of frustration and rage in my head, and a lead weight in my heart.

Many people would describe this as 'diabetes burnout', but that always sounds a bit too dramatic and significant. Mine is perhaps more of a 'diabetes weariness', with occasional outbursts of 'OH FOR GOODNESS SAKE WHAT ON EARTH IS THE POINT'.

Diabetes is such a mind game. Confidence and self-belief count for a lot for me. I do better when I feel things are going better, and I am much more likely to go off the rails or make (deliberate/knowing) poor choices when my levels are all over the place anyway.

You may recall that one of the changes I had been trying to make related to my remaining overnight hypoglycaemia. Nothing like as bad as it would once regularly have been (I have not had any severe hypos either in the day or overnight for years) but time spent hypo overnight is still something I really want to reduce further. Well after the best part of a year, and having tried a whole bunch of different approaches (some disastrous, others not so bad) I'm not sure I'm very much further forward. Without continuous monitoring it's hard to be 100% sure, but it seems I will still dip below 4.0mmol/L at some point on something like 3 nights in a month. I am now running most of the other nights significantly higher and that has resulted in an increase to my A1c by something like 0.5%-1%. On the plus side though, my number of BG checks below 4.0mmol/L last month was slightly lower than normal (whatever normal pretends to be).

So some things are a bit worse. And other things are a bit better. Well that all sounds familiarly 'life with T1D' to most of you I'm sure.

But here is the thing - if you, like me, struggle with variability in levels overnight. There is a LOT we can do to reduce it. There are strategies that we can put in place to really help. But it will never be perfect.

And we have to find a way to make peace with that.

During the day, you can do your best to reduce variability - to make good food choices, to dose carefully, to make adjustments around activity and exercise. And all the time you can watch and check and see how you are getting on. Check. React. Adjust. Move on.

What this piece of research, published in Diabetes Journals in May this year, demonstrates though - is that overnight insulin requirements are likely to be even more variable than those during the day. Think about that for a minute. In almost 2,000 days and nights that were measured and compared there was more variability in insulin need overnight than during the day. More variation with NONE of the variations in food, activity and all the rest.

That doesn't mean that it is not worth trying, of course. We still need to do the best we can to make up for our errant pancreases letting us down on the whole insulin-production front. Keep checking, reviewing and adjusting. Throwing in the occasional overnight basal test every now and then ("Hooray!", said no one ever). But it is worth bearing in mind, if you are struggling this week, that you are not on a level playing field. What works well most nights might let you down tomorrow, and that is not your fault.

Perfection is not possible. All we can do is our best.

Link: http://care.diabetesjournals.org/content/39/5/830.short

Posted by on Wednesday, 12 October 2016

64 Days with the Minimed 640G - A year on

Someone at Medtronic expressed an interest in some of us who video-blogged as part in their '64 days with the MM640G' trial to post a follow-up after a year to say how we were getting on. Well I slightly missed the deadline, but such is life at the moment. I still have a post waiting in the wings that I've been wanting to write since March. Somewhat unexpectedly I have managed to get it put together this week - partly because the battery state on my pump was right for something I wanted to share.

I still really like the MM640G. It's a bit big, it's a bit clunky, and it's a bit of an ugly-duckling in the looks department, but it still works well for me. And if I were choosing this week from the current crop of available devices, I would opt for it again. So much of it does exactly what I want... rock solid dose reliability, great handling of temporary basal rates and basal patterns, handy home screen showing most of what I want instantly. And if I could afford the wizardy of sensors I know from experience that I would love it even more.

Unfortunately, what tends to happen with me, the longer I live with a piece of diabetes technology, is that I find more gripes and niggles with it. So fair warning, this is a bit nit-picky.

So here you go... some moaning about repeat button presses, slightly over-cautious menu-language, that darned screen unlock thing, the flippy-floppy belt clip and, perhaps most importantly the battery check that will reject a battery if it has anything less than absolutely full charge.

Enjoy!

Watch the video

Posted by on Saturday, 23 July 2016

Cholesterol confusion and climate change

Photo by Malcolm Koo (Creative Commons)
There are two types of people in the world - those who repeatedly suggest there are two types of people in the world and those who don't.

When it comes to cholesterol and heart disease however, there seem to be three types of people in the world: Firstly those who think fat is bad, cholesterol causes heart disease and statins should basically be put in the water supply; Secondly those who suggest cholesterol is a natural healthy substance, saturated fat is fine and doesn't affect serum cholesterol anyway and that statins are at best ineffective and at worst part of an evil plot by Big Pharma to make vast sums of money and hang the consequences to anyone who takes them. Thirdly there is the group that watches the two extremes bicker and squabble. That reads report after report each debunking the other's 'evidence' shrugs our shoulders and wonders what on earth to make of it all.

You may be able to tell that I am firmly in the third group.

I have tried to write this post many times before. Almost always after the release of some study or other which shines light on it (from either direction) in a pretty conclusive way. But each time this happens, almost without fail, within a day or two I will see something else that eloquently argues exactly the opposite point of view - and I find myself back at square one. So I have given up waiting until I have made up my mind one way or another and decided to just pour it all out. To try to explain my confusion - probably mostly to myself. It will be rambling, contradictory, borderline-incoherent, and in reality I should probably re-read it and get rid of at least two thirds of it. But I'm not going to spare you that, dear reader. You will just have to suffer along with me.

At the outset it is crucial to remind you that I have absolutely NO medical expertise whatsoever. This is not advice (perish the thought!). I don't understand most of this stuff enough to apply it to my own situation, let alone anyone else's. I know people that take Statins and get on well with them. I know people that have had terrible experiences with Statins and would not touch them with a bargepole.

The last time I nearly wrote this post was April this year when I read this report of the HOPE trial. I found this particularly interesting, because it talks specifically about 'primary prevention'. That's medical shorthand for giving people some medicine to prevent a thing happening that they might be at increased risk of.
“Statins work beautifully, resulting in a high significant relative risk reduction of 25%,” said Yusuf. Further, statins were “relatively safe,” though there was a small excess in muscle pain, but not rhabdomyolysis, in the statin-treated group.
Wow! 25% less chance of heart attack or stroke. Sounds pretty worthwhile. And HOPE-3 focussed on a population at 'intermediate risk'. So these are benefits that were shown to exist even where increased risk was only fairly modest. This caught my eye because you don't have to live with type 1 diabetes for long before people start telling you that you are going to die of a heart attack. That's what does for most of us, apparently. However perky your blood glucose management is generally, living with T1 you will almost certainly be having significant glucose excursions that 'nonnys' would never have. Of course you can significantly reduce your theoretical risk by keeping a lid on your blood glucose levels and HbA1c - but therein lies the snag for people trying to view any of this research and apply it to their own situation. Risk calculators don't work if you have T1. And primary prevention studies that take a cohort of people with a UK-average HbA1c of 9% or so, might have a different risk to you as an individual depending on your own fortunes wrestling the Diabetes Gremlins. Benefit shown to those at 'intermediate risk' was certainly interesting though. I've not had a heart attack, I'd like to keep it that way and I'm getting older year by year.

I had promised my clinic that I would continue to keep an open mind about the cholesterol issue, and perhaps this was it - the primary prevention study I had needed to convince me that it was worth trying a Statin and seeing how I got on with it, in the hope that my undoubted increased risk of heart-based shenanigans might be reduced by 25%.

The elephant in the room, of course, is the term 'relative risk'. Studies, particularly Statin studies, are quite keen on using that frame of reference as it usually gives a nice Big Attention Grabbing Number. So if your risk of something happening was 0.1% and it dropped to 0.08% it might sound pretty meagre. But you could express the same change as a 20% reduction in relative risk, which sounds much more weighty. Hmmmmmmm.

Hot on it's heels, if not chronologically but more in terms of the way I stumbled across things was this rather sensationalised tabloid reference to a study by Professor Harumi Okuyama, of Nagoya City University, Japan. This time, taking Statins can actually apparently *make things worse*. Harden your arteries and increase your risk of heart attack.

This was followed swiftly by this piece by Cardiologist and confirmed Statin sceptic Dr Aseem Malhotra which raises some well-worn questions over the entire evidence-base behind cholesterol-lowering drugs and the refusal of the companies to release the raw data on side-effects.
"biased reporting in medical journals, commercial conflicts of interest and medical curricula that fail to teach doctors how to understand and communicate health statistics was contributing to an epidemic of misinformed doctors and misinformed patients."
reputed French Cardiologist Dr Michel De Lorgeril's own analysis reveals that all studies published after 2006 reveal “no benefit” of statins for cardiovascular prevention in all groups of patients.
I'm not even going to open the can of worms that links Statins prescribed to people without heart disease and a doubling of their risk of developing Type 2 Diabetes. Frankly I have enough on my plate with the diabetes I already have.

And again here, from just this week. Another article that confidently suggests nails in the coffin of the cholesterol hypothesis.
Dr John Abramson, a health policy expert from Harvard Medical School, looked at the HOPE-3 trial and told me the effects were meagre indeed: “91 people have to be treated with a statin for 5.6 years in order to prevent 1 non-fatal heart attack or stroke.” Another way to say this is 90 of the 91 people who take statins for that long won’t see a benefit (and some will experience adverse side effects).
The observant among you will be smiling that exactly the same HOPE trial mentioned above with glowing 25% reductions in risk and very low side effects is now being interpreted as having almost no effect whatever *except* the possibility of side-effects. Though of course, for the 1 person out of 91, the 'not having had a heart attack' would probably be seen as quite a benefit. I wonder how you get to know that you are that 1 person and not one of the other 90. How exactly you notice that something is not happening to you because of a tablet rather than it just not happening to all the others.

And yet... and yet... Most doctors and scientists in the world seem to remain convinced of the link between heart health and lower cholesterol.

My basic problem
Over the last 4 or 5 years I have read a number of posts and articles from people who raise questions over the whole lipid/fat/cholesterol/heart hypothesis. I know that for some of you this will ring alarming tin-foil-hat klaxons, but articles like this (higher cholesterol associated with lower mortality overall *including* heart disease) and this (what causes heart disease anyway) are an entertaining read - and I cannot help it - but they do seem make a lot of sense to me.

I know that for some (many? most?) healthcare professionals some of these characters are a sort of... well, if not exactly laughing stock - certainly not voices to be taken seriously. People who insist that everyone else has it wrong and only they know the truth. Eyes roll. "OK then, if you say so. Never mind dear."

Perhaps it is precisely because I am not medically educated, that I have not learned and trusted the basics of the 'status-quo'. I have less invested in one way of thinking about cholesterol and heart health - and so it is easier for me to read these other arguments and think, 'Well that's interesting.'

Of course, proponents of the mainstream viewpoint will point to decades of scientific research and understanding that have brought us to where we are. For them the lipid-heart hypothesis is an unshakeable fact. And this or that or the other study* has shown that lowering cholesterol really does work. Most of their peers think the same. So take your tablets and feel safer.

*('Funded and published by the people that make the tablets!!' cry the sceptics)

And around and around I go...
  • Lots of studies over many years show (apparently) convincing benefit of Statins for heart disease with very low risk of side effects
  • Sceptics say the 'adverse event' data are under-reported and the pharma companies refuse to release the raw information for independent analysis
  • When it comes to secondary prevention (people who have already had a heart attack) the evidence is much clearer. Most people seem to agree that they work and work well
  • Even among cholesterol sceptics or neutrals there is a thought that it might be some activity of Statins other than cholesterol reduction (such as reduction of inflammation or stabilisation of plaques) that confer benefit
  • Statins are the most profitable drug in the history of the world - vested interest doesn't even begin to cover it
  • And yet I do not subscribe to the view that All Big Pharma Is Evil either - of course pharmaceuticals is a business and the companies have a requirement to make money for their stockholders - but I do think that it is in their interest to create 'products' actually help people, those will be much easier to shift after all
Climate change
The other day, all this made me think about climate change. A decade ago there was a funny little film by Davis Guggenheim and Al Gore called 'The Inconvenient Truth'. We don't even think about it much any more really. As I am sure many of you will remember, the eponymous 'truth' was that the actions of the human race had built up over time and were affecting the climate of the entire planet. Greenhouse gasses, climate change and all that. What struck me was the way that the voices that first raised these ideas from as early as 1896 were initially dismissed perhaps even ridiculed for their line of thinking. Not only that, but now that global warming has been firmly adopted into the scientific mainstream there are still contrary voices. Voices who will insist that for all the evidence that it is unmistakeably happening all around us that climate change is Nothing To Do With Us. That the whole thing is a hoax. A scam. Deniers who will wrap their arguments in convincing-seeming scientific language of planetary cycles, solar variation and internal radiative forcing. There's a conspiracy theory for everything it seems.

And I wonder where we are with cholesterol and heart health? Who is on which side? Will the ones who are being ridiculed ultimately turn out to have got it right? Or at least, made steps in the right direction? Will the mainstream position change in the light of more and better and more independent evidence? Or has the mainstream got it right already and are the cholesterol-deniers just confusing everyone.

I really wish I knew the answer. Because however many times I try to unpick this I always end up here. Shrugging and thinking... well I don't know! Which doesn't really do enough to convince me to take a tablet every day for the rest of my life.

Posted by on Friday, 10 June 2016

Dinkleflakes, diabetes, discussions and #DXStockholm

DxStockholm doesn't make sense, I'm pretty sure it doesn't actually exist. And if it *did* exist, then I'm almost certain I wouldn't make the list. It must be a particularly vivid dream, probably someone else's. I suspect Philippa's Dinkleflake-(me neither)-bacon-pancake-apple-sauce-and-double-cream breakfast is causing some sort of hallucination and I'm in it. Grand, wide, impeccable streets strewn with petals. Impossibly blue Scandinavian skies. More than two dozen storytellers with barely a beta cell between them, weaving tales in half a dozen languages. And yet, this time last week I was there.

But what is it for?

It is very easy to get cynical about these things. As a middle-aged Brit it's virtually compulsory. Any company that puts an event like this together obviously wants something. For all the compliance form-filling about not expecting anyone to write anything, surely it's just bribery plain and simple. Chuck 'em a few treats, show them some shiny new toys and let them spread the word for you through the FaceTwit-o-sphere.

Except that didn't happen.

Stockholm's 20's themed Haymarket Hotel, once a swanky department store

DxStockholm was the second of Abbott's European Blogger weekends. Last year saw one held in Berlin. There was an event in Sydney a month or two ago. I can't speak for the other events, but in Stockholm there was only one short session, led by Abbott's Principal Research Scientist Chris Thomas, that came anywhere close to mentioning product, and that was the only session where all participants were explicitly forbidden from saying anything about what they heard.

The rest of the weekend was an amazing opportunity to meet, mingle and share experiences among a group of bloggers from the UK, Germany, France, Holland, Sweden and Italy. A diverse bunch of people all at different stages of life, and at different points along their own unique diabetes journey (sorry... let's just all agree to forget that I actually used the 'J' word, apparently without irony, and never speak of it again). There was a programme of talks and interactive workshops that covered everything from personal creativity to the potential timing of being subjugated by our newly created super-intelligent hyper-machine overlords. We ate, we chatted, we shared, we learned, we laughed, we moved robot cat ears with the power of our minds.

I am hugely grateful to have been invited. Honoured doesn't begin to cover it.

DxStockholm really did feel like a genuine attempt on the part of Abbott to engage with the patient community. To support it and recognise it as a 'good thing', to encourage it and feed it. Living with a long term condition like type 1 diabetes is easier when you are walking alongside others. Where people can stand by you when you wobble, or understand the tiny, joyful victories of inexplicably well behaved BG levels after some food extravagance. The cloud of voices sharing their stories across Europe as grown enormously since we started writing this blog and I am proud to be a tiny part of that. In the same way that a building feels very different when you know that there is someone else in it - even if they are several rooms or floors away - my life with diabetes is more settled, easier to face, when I know I am connected in some abstract way with many others facing the same daily irritations, triumphs and disasters.

Abbott's theme for the weekend was 'My future, my choices', which led to a very engaging and interesting programme of content. If you'd like a really good summary of the weekend, with some cracking pictures this post by Jen Grieves is a good one. See also this, this, this or this. Honestly! Invite a bunch of bloggers to an event and suddenly you are up to your eyeballs in posts, all better than this one.

A few things that stood out to me over the weekend:
Stockholm is a really cool place. And it's always sunny. Always.

People are inherently creative, even if they don't think they are. Even the simplest snippets of conversation have a unique rhythm to them. Unique insight. Unique voice. You don't have to try too hard, or try to be like anyone else, or do what they do. You just have to be you. No-one on earth can do that like you can.

People and things.
The future is a really exciting place. Things, people and information are getting more seamlessly connected and the Next Big Thing is just around the corner. What sounded like crazy science fiction 5 years ago is happening now and will be everywhere soon. But all of this wearable technology, interconnectedness, captured data, stored knowledge and artificial intelligence has no moral compass. We will have to provide the ethical framework for this exponential future. Above all we will have to remember not to lose sight of the value of people (Dalai Lama quote in that pic rather sums this up).

BioHacking is alive and well outside the diabetes world just as it is with the #wearenotwaiting brigade. Hannes Sjoblad introduced BioHacking as 'science where n=1'. Which sounds very much like what people living with type 1 diabetes face every day. Personal experimentation, data collection and the quantified self. Being aware of what data can be collected and how it can be used for and against you.

Snapchat is apparently a thing. And I still really don't get it.

Mindfulness is relaxing, but not ideal in a warm room at the end of the day with an impromptu scooter rally collecting in the street below.

Separated at birth?
One of the funniest things in the world is waiting while a very hungry Grumpy Pumper is about to be served a handful of toasted cauliflower croutons on an enormous, elegant white soup plate before the (delicious) soup starter is poured. If you've ever wondered if that frown can get any more frowny... I can confirm the answer is a big, solid YES.

Other Europeans are amazing with languages and our laziness and lack of ability as a country makes me cringe. 

Type 1 diabetes likes nothing more that to bring you down to earth with a bump. On Friday, as I landed in Stockholm and stood to move from my seat I happened to notice a young girl in the row behind with a familiar-shaped disc on the back of her arm. It turned out to be one of the German bloggers Lisa - the very first person I met at #DxStockholm. We got chatting and ended up sharing a taxi to the hotel with a few others on the same flight. My German stretches about as far as "Lumpi ist mein hund", "ich bin zwölf jahre alt" and "sprechen sie Englisch" but we all managed to chat away in the taxi thanks to their rather better command of English. Just before breakfast on Sunday morning as people were gathering and chatting away, Lisa suddenly collapsed. A rapid and unexpected crash into hypoglycaemia really knocked her for six and she slumped by the buffet table. Of course, there are few places you could be where you would get more immediate and knowledgeable help, and Lisa was on the way to recovery before the paramedics arrived. But it served as a bit of a reality check to all of us. These events lurk in the corners of each of our lives and while we sometimes splash our insulin around with casual abandon, there is a real and present danger quietly hovering in the background. But even these events are part of our stories. The highs and lows of a life with type 1 diabetes.

As a community we are better together. Different voices, different experiences, different perspectives, different needs and hopes and aims. But all fundamentally connected by our wonky pancreases and our dark sense of humour. Put two or three people with diabetes in a room and they can talk for hours - even if none of them speak the same language.

Huge thanks to Abbott for the opportunity of taking part in #DxStockholm. It was an honour to meet so many amazing bloggers from all over Europe and to feel connected to a wider world.


Obligatory #DxStockholm Group Shot


More about #DxStockholm
A Storify summary by Eglantine LeRoi
Our future, our choices… and our f**king disease by Antje

Googlytranslatable posts...
Abbott DxStockholm by Lisa (including an account of *that* hypo)
About dextrose lulls exit row and more by Sarah
DxStockholm by Sofia

Disclaimer. Abbott Diabetes sponsored my attendance at #DxStockholm and paid for travel, accommodation and organised the event itself. They also treated us to a smashing dinner at Kung Carls Bakficka restaurant on Saturday night and provided a beautiful cookbook on swedish cuisine. I have not been asked, or paid to attend, write about or publicise the event - frankly I think they have been more than generous!

Posted by on Sunday, 29 May 2016

Appointments, priorities and the importance of buy-in

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

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

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

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

But.

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

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

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

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

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

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

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

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

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

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

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

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

This was a mistake.

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

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

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

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

    Posted by on Saturday, 7 May 2016

    Normal service will be resumed as soon as possible

    Apologies for the interruption - the fluffy four-footed addition to our household has made finding time for blogging very difficult in recent months. Which is unfortunate really, because I have at least three or four posts waiting in the wings that I would really like to put together!

    We picked up our young Clumberdoodle pup at the beginning of April and time has absolutely flown by since. For a couple of months before Marvin's arrival we were busily DIYing and generally attempting to puppy-proof (ha!) the house and garden a little. It's all been a bit of a blur to be honest and reminded Jane and I of a heady combination of those weeks with a newborn babe, mixed in with a good dollop of toddler mischief and a hint of teenage experimentation and boundary-pushing. Fortunately Marvin is a dog who likes a nap, and can be persuaded to do pretty much anything for the promise of a bit of chicken or nibble of Schmacko.

    Around the middle of March I was chuffed to be invited by the wonderful Dr May Ng to speak at the North West Children and Young People's Network Education Day - if you'd like to get a glimpse of what went on I put together a Storify of the tweets. Alternatively, everyone's favourite Diabetes Dad, Kev Winchcombe wrote a great, but altogether far too modest blog post about the day. His talk was far more packed with laughs and interesting detail about diagnosis, transition, DIY APS and Nightscout than my blathering about spurious similarities between daily management of type 1 diabetes and Scalextric!

    In the coming months I am really hoping to post a follow up to my reflections on DPC2016 detailing what I picked up from Iain Cranston's fantastic presentation on interpreting CGM data and Ambulatory Glucose Profile reports.

    Additionally I have seen a number of conflicting reports/research about cholesterol and Statins in recent weeks and I'd really like to post something about that - if only to be able to process it a little myself.

    Thirdly, I am honoured to have been invited by Abbott to attend an event in Stockholm in June called 'Dx' which looks to be really very interesting indeed.

    Lastly I have been quietly working with a few other DOC legends (quite how I managed to scrape into their hallowed company is beyond me) on something I am only half-jokingly calling "Project Enormous". We hope that soon - perhaps in the next month or two - it will reach the point where we can release it into the wild and see if it has any 'legs', and lives up to the promise of the idea.

    Exciting times.

    Hope your BGs play fair in the meantime and thanks, as ever, for reading.

    Disclaimer. For my attendance at the North West Diabetes Network Education Day my travel and accommodation expenses were generously paid, but no speaker's fees were offered or received.

    Posted by on Thursday, 10 March 2016

    Your Diabetes May Vary (again!) - BG variation after food

    Two different carbohydrates, yesterday. (CC)
    Which would hit your bloodstream faster, a banana or a biscuit? Pure glucose or a slice of white bread?

    Well, in news that will come as a bit of a shock to some (and not at all to others), you can't actually know without checking for yourself.

    Anyone with diabetes who has spent much time monitoring blood glucose levels before and after meals (especially if they have then compared their results with anyone else), may well already be familiar with this conversation: Person A: "I find porridge is great in the morning, it releases really steadily until lunchtime"
    Person B: "Really?!? I can't go near porridge - it hits me like a train. All breakfast cereal does. Which is odd really, because Mars bars cause me no BG problems at all" etc etc. Rinse. Repeat.

    Well a recent study published in 'Cell' by the Weizmann Institute of Science has demonstrated once and for all what we pancreatically-challenged types have suspected for a long time. That blood glucose responses to different foods are infuriatingly and often bewilderingly individual.

    The study took 800 people without diabetes, around 54% of them were overweight and 22% classified as obese (with a BMI of over 30 kg/m2). They were connected to a Continuous Glucose Monitor for a week at a time, but the CGM was 'blinded' so participants had no way of seeing what was happening to their levels. CGM consists of a small sensor placed under the skin which records interstitial glucose values every 5 minutes, 24 hours a day. These values generally lag behind true blood glucose values by 10 minutes or so, but give a complete picture of what is happening before and after food and during sleep. People in the study recorded their food intake, levels of activity and so on using a smartphone app. They followed their normal routine, and ate as they normally would with the exception of breakfast, where they were assigned one of 4 standardised meals containing 50g of carbohydrate.

    If you have spent much time online, sharing experiences with people with diabetes you may get a nice warm fuzzy feeling of "Aha! I *knew* it!" at the results. Here are a few things that came out of the research that caught my eye:

    Responses to different foods were highly individual. Many people's BG rose rapidly after a standardised glucose meal as you would expect, but others were relatively untroubled by pure glucose, while eating bread sent their BG levels through the roof.

    A graph comparing two participants shows an almost exact inverse response between, for example, cookies and bananas. In the light of this, any lists of 'foods which release slowly' can only ever be viewed as a general guide. Your own response to any food could well be very different.

    In general, people who had higher BG responses after eating carried more weight than those with lower responses. The paper doesn't offer any thoughts as to whether these higher BGs make people put on weight, or whether the excess weight causes the elevated post-meal BGs, but in either case this association did not just occur at the extreme ends, but as a continuous range across the various weights.

    The highest post-meal responses 'significantly correlated' with elevated (but still non-diabetic) HbA1c, waking glucose level, BMI and also age - all known to be risk factors for developing Type 2 diabetes. It looks to me like these are people whose metabolisms are already beginning to struggle.

    Perhaps unsurprisingly, post-meal responses were shown to be very different to the same foods if eaten after resting/sleeping vs after exercising. Apparently the Pope is also Catholic.

    A 100 people took part in a further study which allowed the researchers to develop an algorithm that successfully predicted post-meal BG responses from a variety of clinical, physical and 'microbiome' (eg gut bacteria) factors. Personalised diets were then able to reduce post-meal BGs effectively. In the Diabetes Online Community we simply call this ‘eat to your meter’.

    The scientists wonder if working directly on reducing post-meal BGs would, over time, reduce some of the other associated risk factors including reducing weight, HbA1c and lowering risk of fatty liver disease.

    What do I think this means for me?
    Well first of all, it helps me realise that it's not just me being 'weird' after all. Different people really do react differently to different foods. Sometimes in completely inexplicable ways. I spent almost 20 years eating things that had been recommended as 'slow release' before beginning to systematically test my own responses to foods and discovering a few surprises and several absolute shockers that I had always believed were 'pretty safe'.

    In general, it is easy to see that the proportion of carbohydrate in a meal could have a fairly direct impact on post-meal BGs, but this research goes some way to explain many of those 'Huh??!?' moments, and demonstrates that there's a lot more to it than that for each individual.

    People make a lot of noise over 'low carb' vs 'high carb', but in truth, those definitions are of little interest to me. What I'm after is a varied, enjoyable, sustainable, LOW BG SPIKE diet that suits *me*. This research encourages me to continue looking for it.

    "Your Diabetes May Vary", and all that.

    Posted by on Tuesday, 8 March 2016

    Diabetes UK Professional Conference 2016 - Education, Individualisation and steps in the right direction

    Between Wednesday and Friday last week I found myself in sunny Glasgow immersed in the insanely intense experience that is the annual Diabetes UK Professional Conference. I had been lucky enough to attend last year as one of Diabetes UK's bloggers and tweeters. This year Diabetes UK wisely ran a competition to throw the net a little wider for patients interested in attending the event and spreading the word. Thankfully they had the good sense to ignore my application and selected five people who did a significantly better job of sharing the content of the conference with the #doc (Diabetes Online Community) than I did last year. Hats off (alphabetically) to Andy, Bob, Charlotte, Ellie and Helen - you did an amazing job. In particular, Andy Broomhead has really put the work in covering many sessions of the conference in a series of excellent blog posts. Ignore this turgid waffle and go and read them instead - they are far better.

    Undeterred by not making the cut with DUK, I contacted the lovely folks at Abbott Diabetes to ask whether they would be prepared to sponsor any patient attendance to the conference. I was delighted when they said that this was going to be a possibility, and was subsequently asked if I would be prepared to share some thoughts of my experience as a patient who has used Freestyle Libre off and on for a year or two.

    And so it was that I hopped on a plane early Wednesday morning and was able to make the opening sessions of the conference in the architecturally-spectacular SECC in Glasgow. The Diabetes UK Professional Conference really is quite hard to describe. At least this year I was a bit more mentally prepare for its scale. There are upwards of 3,000 people from all over the world who specialise in diabetes, and everywhere you look people are making connections, comparing notes, absorbing new research and knowledge and generally seeking to see, or create, or develop better diabetes care. The programme is so packed full of sessions and opportunities that however much you try to cram in you are left with the feeling that you have missed out on really good stuff. Additionally, having been to a few events over the last year or two I am beginning to find the concourse a more hazardous environment - particularly if timings between sessions are tight. It's all too easy to bump into someone you've met before and grabbing a 'quick five minute' catch-up can leave you scurrying to your next session and having to creep in at the back with the apologetic shrug of a guilty latecomer.

    I cannot possibly do justice to all the excellent sessions that I saw over the three days, so instead here are a few edited highlights.

    Overall themes that struck me: Education; individualisation of care; leveraging (ugh! sorry) apps and technology; empowering and engaging young people; treating people, not numbers.

    New outcome trials in type 1 diabetes
    The opening plenary session on the first day included three talks, one of which was Simon Heller presenting results from the REPOSE trial (The Relative Effectiveness of Pumps over MDI and Structured Education for Type-1 diabetes) which is due for publication very soon. Essentially, REPOSE has shown that pumps, on their own, make less difference than might be supposed. Yes they *are* more flexible, yes they *are* more precise and offer additional techniques and possibilities such as extended boluses and temporary basal rates - but as Simon Heller said, "You can't take someone with a high HbA1c and say, 'You need a pump, that will fix it', because it simply isn't true." His argument was that as good as the technology is, people need a lot more help, support and training in managing their own diabetes in order for that technology to work well. People can do very well on pumps, people can do very well on MDI - but it is the help and support they have received in making better decisions that will make the biggest difference. It also makes me wonder whether, for some people, approval for pump therapy forms a sort of catalyst to re-examining their day-to-day management strategies. And what T1 care really needs in the UK is more engaged, better supported and individually encouraged patients who are equipped to wrestle their own particular diabetes monster as best they can.

    Everyone's second-favourite rabble-rousing superstar endo Partha Kar summed this up quite nicely in his round-up blog post:.
    It isn't about the latest super insulin, it isn't about the flashy technology, it isn't about the "cloud", it isn't about Apps or offering education programmes... it's only about one thing- YOUR ability as a professional to engage and communicate with the patient- move away from the "how's your blood sugars?" to "how are you"... till that day, we will not be able to improve outcomes - however much resource we magic up.

    Colin Dayan then spoke about peptide immunotherapy (more on that later) followed by Rob Andrews and Parth Narendran presenting results from the EXTOD trial (exercise in type one diabetes). One result of the trial that really struck me was that when polled the majority of HCPs felt confident to advise around exercise and type 1. However when those same professionals were tested with a detailed questionnaire, they were often not able to give reliable information in response to the questions. EXTOD.org is a resource that aims to offer good information for heathcare professionals and to support patients with type 1 seeking to exercise.

    Apps and web-based technology: fad or future for diabetes care?
    A topic quite close to my heart this one. I was gutted to miss Nick Oliver sharing about automated dose adjustment (that bloomin' concourse again!) but hugely encouraged to hear from patients and HCPs at both Kings (Geraldine Gallen, Imogen Lee) and Newham (Mark Norman, Shanti Vijayaraghavan) about their experiences of 'virtual clinics' using Skype and other web-based technologies to support people with diabetes wherever and whenever they need it. A more flexible, less attendance-at-clinic-based-approach improved engagement, patient satisfaction and outcomes, particularly with young people. To be honest it sounded very like being connected to the #DOC, but with added 'doctoriness'.

    Lastly Andy McQueen and Deborah Wake went on to describe the successful 'My Diabetes, My Way' project in Scotland.

    Glucose Monitoring in Diabetes
    Another selection of three talks. Andrew Farmer spoke about self-monitoring in type 2 diabetes. Unfortunately his studies always seem to come down on the side of 'no' for the general T2 population, and always talk about 'adherence to diet' rather than transforming your diet by 'eating to your meter'. Interestingly David Owens who chaired the session asked "is there a group of patients outside the guidelines who are willing to use SMBG to change their behaviour?" to which Prof Farmer did concede, "there is no evidence at a population level, but if someone says it really helps - then it is open to try it out". Sadly I was right at the very back of the auditorium, too far away from the microphone and wasn't able to ask about Dr Farmer's reaction to Jane Speight's interesting paper on the STEP study which concludes that structured testing for T2s not on meds can be very beneficial. This certainly seems to be borne out by experiences of people I see on diabetes forums who are able to reduce or eliminate medication using SMBG to define a diet that their body is able to metabolise properly by experimentation rather than guesswork or 'adherence' to what someone else says they should be eating.

    The session on deciphering CGM data by Iain Cranston was probably my favourite of the whole conference. I'd like to go into that in rather more detail so I'll cover it in a separate post.

    Finally for that session Lalantha Leelarathna spoke about emerging technologies, bolus calculators, Libre, CGM and encouraging results from sensor augmented pump and artificial pancreas trials.

    In the exhibition hall
    Later in the afternoon I gave the first of my 10 minute talks about the ups and downs of juggling type 1 and how I have been using the Freestyle Libre as an occasional part of my toolkit for the past few years. Slightly unnerving just having to start talking on the Abbott stand with people milling about, but just as they had for the brilliant Peter Hammond, people soon began to stop and listen to my rather less edifying wittering and a small crowd formed.

    One other intriguing discovery on day one was a stand for a new blood glucose monitor (the Keya Smart), due to launch in the Summer (the UK being first in the world) which simultaneously measures blood glucose and ketones on the same strip from the same sample. Cynically I have to say I assumed that the strips would be priced perhaps halfway between 'normal' BG strips and the significantly more expensive blood ketone strips. However, the people on the stand suggested approximately £15 a pot - which is fairly average among BG strips. I'm not one who seems to struggle with ketones, and I am quite content with urine strips, but the possibility of ketone monitoring alongside each BG test could be hugely reassuring for anyone who has struggled with DKA. The meter offers a traffic-light style readout through green, amber and red to alert you if ketones are present and worsening - so you can instantly tell if you BG is simply annoyingly high or if you need to be taking more drastic action/considering A&E. It will be interesting to see if the product lives up to the hype when it launches.

    Day two

    Immune Pathways in Type 1 Diabetes: will they lead to a cure?
    Mark Peakman's mind-bending Dorothy Hodgkin Lecture picked up where Colin Dayan had left off. All I can say is that it made a great deal of sense at the time, but really the science is way beyond me. It seems they can already identify people who will go on to develop Type 1 Diabetes at some point with some certainty, even in infancy. The tantalising possibility is to use peptide immunotherapy to alter the errant immune system action and prevent the onset of type 1. The signs are very encouraging, but (almost inevitably) still at a very early stage.

    Hypoglycaemia
    Chaired by Pratik Choudhary and Jackie Elliott, these 6 short talks covered many aspects of hypoglycaemia, brain function, risk, inpatient experience and models of care. One extraordinary and very unexpected statistic related to the average age of people admitted to hospital with Severe Hypoglycaemia. I would have assumed that the challenge lay primarily with children, or perhaps young people and teens. However the data presented clearly showed that the distribution is shifted towards elderly patients, often those living alone. I can't imagine how frightening this would be. However a new model of care developed in the East of England, including a 'single point of contact' had made significant progress in reducing repeat-caller rates and with increased referral to education has provide significant savings both in terms of money (more than enough to pay for itself), but more importantly the major cost in terms of quality of life.

    Individualising targets in diabetes: NICE or not NICE?
    Of course I was not able to resist this discussion about the role of NICE guidance in informing diabetes care. Chaired by Nicola Milne and Paul Newman, four speakers offered their opinion on the role of NICE guidance. Laura (ninjabetic1) gave a wonderful patient perspective covering structured education, test strip allowances, targets and inpatient care. Many good things in the guidance, but how many are being done? Whether the new tighter HbA1c guidance to avoid complications might induce feelings of judgement and failure.

    Brian Frier from Edinburgh then gave some harrowing accounts of people being treated to inappropriate glycaemic targets. Chasing potential long-term benefits for the avoidance of complications in elderly patients gradually introducing treatment on top of treatment until they ran the risk of falls or injury related to hypoglycaemia. QoF came under a good deal of scrutiny, particularly in the way it discourages individualisation of care.

    David Millar-Jones, a GP from south Wales dissected whether the type 2 guidance was fit for purpose. The published version had come a long way from the initial consultation draft he said, but there were still question marks over whether it could be easily used in real-world practice clinics.

    Lastly Partha Kar offered his thoughts on whether the Type 1 guidance was realistic, or simply a utopian fantasy. He made it clear that he felt that the guidance itself was excellent, but asked the more difficult question of what the outcome of the publication was likely to be, particularly in the light of less-than-rosy National Diabetes Audit reports for Type 1. Whether the guideline production machine was actually able to achieve much in the cash-strapped reality of the 21st Century NHS.

    This was probably one of the most lively sessions I attended with many questions and comments being made at the end of each of the talks. We were fortunate that Stephanie Amiel the hugely respected chair of the Type 1 guideline development group was there to clarify one or two points. And I may have accidentally stood up at the end to offer a few thoughts of my own, and to confess to the lower A1c target which was, after all, mostly my fault.

    Summary
    There was much to be encouraged about during the conference. A genuine desire to see diabetes outcomes improve, to share and promote better ways of doing things and to make tangible progress towards more people living better with diabetes.

    Here are a few quotes that really resonated with me during the three days.

    All in all a fantastic time and lovely to be able to meet up with so many faces old and new. Lis, Laura, Sandie, Charlotte, Ellie, Helen, Emma, Sophie, Dani, Hannah, Jackie, Becky, Stephanie, Andy, Bob, Peter H, Partha, Pratik, Pete D, Kris, Jonathan, Neil, Sacha, Sheldon and many more I know I have forgotten. Here are a few of us gathered in the bar of the Crowne Plaza on Thursday evening.


    Disclaimer. Abbott Diabetes kindly paid for my travel, accommodation and entry to the conference. They also paid a modest honorarium to cover the time taken to prepare and deliver my short talks. I was not asked to say anything in particular and if I thought the Libre was terrible I would have said so. I have not been paid to write this post or any Tweets relating to the conference. The chance, as they say, would be a fine thing.