Posted by on Sunday, 19 April 2015

Diabetes breakups

I'm sorry. I wish it hadn't come to this, but I'm afraid it's over between us.

I don't know why you are looking so surprised - you must have known this was coming after how things have been between us over the last few weeks.

We've been inseparable for so long now. Hardly a day has gone by in the last 5 years when I've been apart from you. All those times we've shared. All those adventures. All those scrapes we have got through together. And now it's come to this.

I know the polite thing to say is that this is down to me, but we both know that isn't the case here. It's not me, it's you. You've changed - and not in a good way. It's not just me that thinks so. Our friends have noticed the change in you too. And I'm afraid I can't go on living with you like this. You have let me down, when I needed you most. And then when I forgave you and tried to go on as before - you just went and let me down again, and again. And now I hardly even recognise you. I just don't know who you are any more.

Maybe you are looking for someone else? Someone with deeper pockets maybe? I hope you'll find someone for your future, but I know for certain that it isn't me - not while you are behaving like this.

And it breaks my heart, because we have been in this together for so long. Perhaps I came to rely on you too much? There were times when I thought I could accomplish anything as long as you were by my side. But now? Now I'm just waiting to be let down. Waiting to be abandoned. I can't trust you - and I can't be with someone that I can't trust.

I'm not angry I'm disappointed. And angry.

So I'm sorry, but I've found someone else.

For those who have *no* idea what I am going on about... after many years of faithful togetherness it seems that Fruit Pastilles (my pocket-based hypo remedy of choice) have changed their formulation. Over the last fortnight I've had to ditch large parts of several packets which became an unusable gooey mess covered in irremovable tinfoil, occasionally plastered to the inside of my jeans pocket. Nice. The worst discovery was during a training run for my forthcoming 10km road race in support of INPUT. Feeling a bit low and discovering half the remaining pastilles rendered useless 5km from home put me in a pretty tight spot for my run back.

Posted by on Thursday, 2 April 2015

Possibly one of the most inexplicably stupid things I have ever done diabetes-wise

My blood glucose readings, yesterday.
Well... here's a thing. And I still can't actually quite believe that I did what I seem to have done.

The setup
Last night we had a smallish portion of spaghetti as our evening meal. This I realise for many would be a complete no-no, but pasta has typically not been the nightmare for me that it is for many. After little experimentation and tweaking I have managed to work out a reasonably successful strategy so it no longer fills me with dread - we eat it maybe once a month.

My approach (depending on recent results) usually involves a 2.5 hour dual/combo bolus at 60:40 for the calculated dose plus an extra 1u. Previously I'd also needed an extra unit up front too, but had dropped that about 9 months ago following some post-meal dips.

More recently my previously solid post-meal performance has been *slightly* marred by a smallish rise something like 4-5 hours after eating (when the majority of the bolus was waning) so yesterday I decided to rejig my approach a little since I have a Libre sensor in at the moment and can watch what's happening. So last night I went for the calculated dose+1u as 40:60 over 3.5 hours and added the extra unit up front and watched and waited.

Annoyingly I was starting from 8.3, but spaghetti often takes a while to get going for me so I wasn't unduly worried. Stayed pretty steady for the first hour then rose gradually by about 1.5mmol/L towards hour 2. Stupidly during this time I decided to confuse matters by bolusing and nibbling on some snacks that were circulating. By about 3hrs after eating I was 5.2 with vertical down arrows (and DW still chugging away) so I gulped some precautionary Lucozade. Headed off the hypo fine, but then my BG rose and flattened at 8.5-9.5 for an hour and a half (presumably spaghetti kicking in at this point). Then inexplicably at 4.5hrs post-prandial (10.30pm) I had another unexpected BG 'kick' up to something like 11.5 so, getting a little frustrated, I whacked in another unit despite considerable IOB (insulin on board). Sat and waited until midnight and the Libre trace was pretty flat in the 10s-11s - no sign of the 1u or IOB making any impact. Just after midnight I topped-up my IOB to make it the 2u I had intended to go to bed on to counteract the remaining spaghetti fallout.

Just to recap: Spaghetti is usually pretty predictable and not a problem. Added complication of snacking/bolusing/dose stacking/dipping/(over)treating *and* trying a new system all at the same time.

But we've STILL not got to the stupid thing...

The stupid thing
One of the great things about the Libre for me is the ability to see what's going on overnight. And also that if I happen to wake, even for a moment, I can scan and check levels in a way that I simply *do not* do if it requires me to fingerstick test.

I checked at 4am and had been pretty much flatlining around 9.5 since 1am. No insulin left on board. I consulted Artoo who suggested a correction of just over a unit, but I wanted to err on the side of caution so I went for a manual bolus of 0.9u (about two thirds of the recommendation).

I woke three hours later a little groggy and scanned for the Libre to read 'LO'. Artoo showed nearly 2 units of insulin on board.


Checked downstairs via BG meter which confirmed BG was 2.2mmol/L. Bewildered and glugging Lucozade I tried to make sense of the situation...

Checking my bolus history I read that at 4am I had bolused not a cautious 0.9u, but 6.0u. Six units. SIX! My BGs had, not surprisingly, dropped off a cliff around 5.30am.

I simply cannot understand how I managed to do that. Even though one figure is very like an upside-down version of the other, I can't believe I could have made that error as all the buttons etc would be on the wrong side of my robot counterpart if I was holding the pump upside down.

But however it was that I managed to construct that error, there seems no denying that I did it.

And it's not one I'm wanting to repeat any time soon!

Posted by on Friday, 20 March 2015

Thoughts from the Diabetes UK Professional Conference 2015

I'm a bit late posting this, but I just wanted to jot down a few thoughts following last week's Diabetes UK Professional Conference 2015 (#dpc15). I was, as the saying goes, dead chuffed to be invited to be one of the bloggers/tweeters co-opted onto Diabetes UK's Press Team for the three day conference in London's sunny docklands where the great and the good of the world's diabetes healthcare professionals, researchers and pharma companies gather for a good old chinwag about all things pancreatically challenged.

DPC is one of the biggest events in the global diabetes calendar and patients are not normally allowed to attend for complex reasons involving a Pharmaceutical Industry code of practice (and possibly also so that they can speak fluent doctor-technobabble unhindered and don't have to watch what they are saying about how bloomin' annoying patients are and how the whole business would be much easier without us). However as honourary members of the Press Team we were encouraged to tweet, blog and generally feed information from the conference to the world at large, including you lot.

It was the first time I have been at an event anything like this and it was absolutely huge. Whatever presentation you were attending you got the distinct impression that there were at least six other things running simultaneously that you'd like to be having a look at. Attendance this year was apparently bigger than ever, though #DOC peeps who had been to previous conferences commented that Excel's cavernous spaces made it seem a bit more spread out.

At least as valuable as the presentations themselves seem to be the incidental networking and bumping-into opportunities. Everywhere you went people near you were meeting up, rekindling connections and sharing information. People who have attended more than a few of these conferences must have quite a hard time getting to any sessions at all, because there are so many people to chat with as you move from one place to another.

On a personal level it was great to be able to meet again, or for the first time with so many amazing members of the DOC incuding, Grumps, Annie A, Laura, Sandy, Charlotte, Hannah, John, Annie C, Kath, Roz, Lis, Partha, Pratik, Pete, Neil and others whom I have doubtless forgotten (sorry!). It was also a great privilege to meet with Barbara Young, Chief Executive of Diabetes UK who took time out of her hectic schedule to meet with the bloggers/tweeters and stayed chatting longer than she had intended. She was quite an inspiration, and seemed genuinely interested in listening to feedback and input from the diabetes coal face - about what matters to people with diabetes and their families. Someone commented that Diabetes UK often get a hard time about occasional gaffes, but rarely seem to blow their own trumpet when they do make a positive impact (like here, where they have got the Government to change ther mind about prescription fines). It was only a brief conversation, but it was quite uplifting and I got the feeling that DUK was in very safe hands. It was great too to be able to meet up with representatives of various pharma and device companies that I have bumped into over the last few years to get a feel for any exciting new toys that might be in the pipeline.

Between us, the bloggers/tweeters tried to divide up and 'live tweet' from as many sessions as possible. This proved to be quite a challenge as the talks are short and intensely packed with information, new research data and other interesting snippets. By the time you have tried to compose a phrase which is as close to a quote as you can remember, with or without a photo of the projected slide and then edited for 140 characters, the speaker has chased on at a rate of knots and you are playing catch up.

Here are a few thoughts from some of the sessions I covered, based on the hasty notes I took:

Could intermittent fasting have a role in diabetes management? Michelle Harvie, Manchester
Short answer, yes. For people with type 2 diabetes various intermittent fasting apporaches (eg 5:2) seem to be easier to stick to and more effective for weight loss than continual energy restricted approaches. Fasting days in the research data tended to be approx 650cals and low carb, but results were equally good if low carb but not calorie restricted. For those in whom the approach worked there tended to be an effect on the non-fasting days too. Even though people *could* eat more freely, they did not necessarily do so.

Fermentable carbohydrates: Their role in diabetes management Nicola Guess, London
Not something I'd really heard of, but fermentable carbohydrate (think dietary fibre... pulses... resistant starch... oats...) seem to have promising effect in the context of type 2 diabetes. Results were a little mixed across different studies, not least perhaps because it can be quite hard to evaluate how much FC is in different foods. It may act as a sort of appetite suppressant. When 21g was given as a dietary supplement it resulted in reduced energy intake for the diet of people with Type 2 even if they were not asked to eat less. Fermentable carb was shown to have a positive effect on the phase 1 insulin response of people with type2 and even non diagnosed family members. Insulin sensitivity has been shown to improve in the presence of fermentable carb too. Unfortunately too much fermentable carb can have unfortunate gastric side effects - the gas released from the fermentation of pulses in the gut being an obvious example.

Advancing inpatient diabetes care 5 presentations chaired by Gerry Rayman, Ipswich
This was an extremely data-rich overview from some new JBDS data, including effective new protocols for management of people on corticosteroids and variable rate insulin infusion (sliding scale) in inpatient settings. Also presented a was a huge new piece of research by Norfolk and Norwich Hospitals into nationwide outcomes/detail of DKA management. Some of which was pretty scary stuff - the risk to inpatients with diabetes of experiencing Severe Hypoglycaemia for people with diabetes is 1 in 50 and risk of developing DKA while in hospital is 1 in 200. As alarming as this presentation might have been there was certainly a sense of concerted effort to tackle the challenges of inpatient management of diabetes and establish effective protocols that improve outcomes.

3DFD Integrating Diabetes Care into an individual's world Mary McKinnon Lecture by Carol Gayle and Khalida Ismail, London
I was really taken by this presentation. It outlined a 'three dimensional' model for improving diabetes care by fully integrating clinical, psychological and social approaches. Both type 1 and type 2 diabetes are associated with every major type of psychological disorder, and people with any of these mental health challenges find self-management of this complex and fickle condition additionally challenging. In addition, people living with severe social deprivation are significantly less able to self-manage. Put simply, diabetes is way down on their list of priorities. Address other areas in patients' lives (housing/debt/mental health) and they are released into better self care.

The 3DFD is a short-term intervention with a lasting impact and has moved from an interesting research idea to become a commissioned service in several UK locations. Initially seen as a 'luxury service' it is not only cost-effective, but actually pays for itself several times over in terms of savings made in other areas.

Lessons from the study of hypoglycaemia RD Lawrence Lecture, Rory McCrimmon, Dundee
Some really interesting stuff here about what happens when the body is subjected to repeated mild hypoglycaemia. The exact brain and body chemistry that is at work in the loss of hypo warning signs, and also the loss of counter-regulatory hormone response (epinephrine/glucagon/liver dump). Initially the brain fires all it's warning bells when blood glucose levels drop too low, but soon enough it learns to adapt. Attempting to 'perform better' at those lower levels and not expending the energy of those warning signs. Ultimately though, the brain can no longer function at the lower and lower glucose concentrations that can be reached without warning. Avoidance of hypoglycaemia can reverse this and 'reset the switch', but many struggle with undetected nocturnal hypoglycaemia which sets back their efforts.

Integration of psychologists into paediatric services 3 presentations chaired by Mark Davies
It was really good to see psychological support given so much coverage at the conference. Particularly in relation to children and young people where effective and timely psychological interventions can have such a dramatic effect.

Workshop: Psychological techniques for addressing hypoglycaemia unawareness Nicole de Zoysa and Victoria Francis, London
Great stuff here from the folks behind DAFNE HART, a successful pilot which demonstrates the importance of psychological support in changing people's behavior and understanding of their own relationship with hypoglycaemia. It was particularly good to see the 'compare and contrast' conversation scenarios between healthcare provider and PWD. The difference between people feeling told off/lectured and people being supported to make positive change through responsive listening and motivational interviewing.

Social Media, Why Bother with a Fad? Partha Kar, Annie Cooper, Roz Davies and Laura Cleverly
Great to see social media and peer support getting such a good response at a conference like this. Topics covered ranged from social media in support of nursing practice; tackling isolation and the building of patient communities; and whether social media could be the 'missing part' of someone's diabetes care. Not only that, but Partha Kar opened his talk by suggesting that the term 'non compliant' be removed from the diabetes phrasebook as a result of some social media interactions at the conference. The session ended with a frantic live Tweet Chat and I just hope that some of those who saw the presentations might begin to consider how to integrate social media/peer support into their own practice.

Cognitive decline in people with diabetes 3 presentations chaired by Richard Holt, Southampton
A bit of a mixed bag across these three presentations. Both type 1 and type 2 diabetes seem to associate with 'cognitive decrement' (which I don't like the sound of to be honest), though this only subtle and does not seem to worsen over time. When it comes to type 2 diabetes the Edinburgh study suggests that vascular changes may be the predominant factor. Blood pressuse has little effect, HbA1c has a small effect but smoking has much more of an effect. Overall, improved diabetes management and lack of diabetes complications seem to be a good thing as far as keeping your marbles is concerned. Conversely people with both Alzheimers and T2D are at significantly increased risk of severe hypoglycaemia.

When it comes to young people, there did not seem to be much evidence that mild hypoglycaemia was associated with impaired cognitive function in the long term. Though there may be small risks to very young children who experience severe hypoglycaemia and coma, the brain quickly becomes more resilient in older children and young people.

Hot topics - Diabetes and cardio-vascular risk 4 presentations chaired by Naveed Sattar and Jiten Vora
I was particuarly struck during Miles Fisher's presentation about assessing cardio-vascular risk in people with diabetes when he described the decision to recommend statins for the primary prevention of CVD in people with type 1 diabetes as an 'OBSAT' decision. With a twinkle in his eye he explained the acronym as 'old boys sat around a table'. He suggested that the research evidence did not support the recommendation and that there was a risk of 'over medicalising' the population. His opinion was that the presence of micro-abuminuria was a more reliable marker for prescribing statins for primary prevention in T1D.

In general terms intensively managing blood glucose levels, the earlier the better, significantly protects against CHD for people with diabetes.

Physical activity and Type 1 3 presentations chaired by Jason Gill, Glasgow
This was my last session of the conference and the one that provoked perhaps the greatest interest on Twitter. One of the slides in Rob Andrew's presentation showed a flow chart which seemed to contradict itself. Beamed off into the ether without the explanatory dialogue many people responded, "Ehhhhhhh?!" but the presentation had moved on apace. A lesson learned perhaps in the perils of trying to share complex ideas in 140 characters at speed. There was a lot of detail from Rob Andrew about managing exercise and type 1 diabetes, you can find more information here when the site launches soon. Some interesting snippets too from Richard Bracken about bone strength in T1D. I had not realised that type 1 was associated with an increased risk of fractures, but it seems that resistance training can help improve bone condition and strength.

On the whole I was really encouraged by the conference programme, and by the tangible sense of passion and commitment from those working in the field who are aiming for better outcomes and more personalised care for people with diabetes. Huge thanks to Diabetes UK for inviting me to be a part of the event.

Disclosure: My travel, accommodation and entry to the conference were paid for by Diabetes UK. I was not paid to write this post or any tweets relating to #DPC15.

Posted by on Monday, 9 March 2015

Abbott Freestyle Libre available to new customers again

There were excited murmerings on Facebook last week and on Friday I received a phone call that confirmed what many, many people have been waiting for over the last few months.

Abbott have begun to take on new customers for the Freestyle Libre again

Wooooo hoooooooo!!!

I think it is probably fair to say that Abbott were a little taken aback by the level of demand for their new toy immediately after launch (the Libre 'flash' glucose not-quite-CGM monitor). It wasn't long before they realised that consumer enthusiasm was going to outstrip their production capabilites and they took a tough decision to stop taking on new customers in order to protect supply to those who had signed up first. Probably the right thing to do, but pretty frustrating for many people - myself included, who hadn't quite got around to registering with their e-shop early on.

Some people have got quite cross about this, but I'm more inclined to give them the benefit of the doubt. This was a completely new piece of technology in a relatively small market place (certainly in the UK). They had to anticipate what sort of level of early take-up there might be, but it's not entirely surprising that they didn't get it spot-on. And deciding to limit supply so that fewer people got better service rather than many people getting rubbish service seems to have quite a consumer-focussed feel to it. They didn't just take everyone's money and not deliver, they concentrated on ensuring that those who signed up early could get full-time sensor coverage if they wanted it.

But for the rest of us, the weeks turned into months... and still we waited.

Until now.

As of last week they have begun to issue emails to people who signed up on the website. They are doing this on a 'first come first served' basis, so those who asked to be told when Libre was available to new customers in October/November 2014 will be hearing first.

Of course they will have to weed out a bunch of dead results from those expressions of interest. People who have changed their minds and so on - so if you recive an email you will need to act on it pretty promptly.

According to what I've been told by Abbott, it works like this:
  • People will receive an email alert which (I think!) outlines the process
  • People then recive a second email which gives them a relatively short window of opportunity to respond
  • They then need to sign up as a new customer
  • You also need to place an initial order to activate your account (minimum of one sensor approx £50)
  • Thereafter a maximum of 2 sensors can be ordered every 14 days

Looking forward to receiving my email :)

Posted by on Thursday, 26 February 2015

25 not out - stick THAT up your nose diabetes!

At some point during the last week (I'm not entirely sure which day) I made my quarter century of living, more or less successfully, with type 1 diabetes. Twenty five years later and I've still got both feet, my eyes are pretty much unscathed and my kidneys still seem able to cope with clearing up after all the stuff I throw at them. Not a bad effort.

Also this week, I stumbled across two interlinked snippets of information that interested me:

We're dooooooooomed!

The first came via a retweet from Dr Pratik Choudary about some research from the T1D Exchange that suggests that the longer you have lived with type 1 diabetes, the more likely you are to experience severe hypoglycaemia (needing assistance of a third party, family member, friend or paramedic to recover). I've come across Pratik's work during my sifting of research for the NICE Guidelines update, and he seems to have his finger on the pulse, so was intrigued - interesting people sharing interesting stuff...

I confess I was slightly surprised at the findings. I suppose in a sense there is a certain logic to them, older people will have any residual 'helping hand' action from their own pancreas long gone, and more opportunity to have succumbed to a degree of hypoglycaemia unawareness. Still a bit odd that incidence of severe hypoglycaemia looks to increase year on year though - I would have expected a good deal of difficulty in managing BG in early childhood (tiny doses... erratic hormones... growth spurts... irregular physical activity) and certainly during teenage years (rebellion... wanting to fit in... more growth spurts and raging hormones). Even during young adulthood and middle years there's a degree of chaos going on with life in general. Particularly if people become parents themselves - when focussing entirely on yourself tends to slip into the background, replaced with sleep deprivation and general exhaustion. By contrast my own life seems to have become slightly more settled post-40. Much more time to sort out my own stuff.

When we began writing our blog it was not at all uncommon for Jane to have to help me out early in the morning from a nasty low (thanks Lantus!). When I look back, I am ashamed that I put everyone through this for so many years and did not sort it out earlier. But thanks to the support, wit and wisdom of the DOC, over the last few years I have gone a long way to reduce my hypoglycaemia in general and severe hypoglycaemia in particular. I can't remember the least time I got so low that someone in the family had to lend me a hand - but it was probably three or four years ago.

I for one have exactly the opposite experience of the T1D Exchange findings. What about you? If you are living with type 1, are you seeing more or less severe hypoglycaemia than before? Should we accept an increase in severe hypoglycaemia as inevitable*?

* The answer, of course, is NO!

Nasal Glucagon

Photo: Mike Hoskins
The second thing that caught my eye came as an email, following a presentation at the Advanced Technologies & Treatments for Diabetes (ATTD) conference in Paris last week, concerning a novel new glucagon treatment that is in development. Glucagon is used as an emergency treatment for severe hypoglycaemia. Currently it involves injecting sterile water into a vial of powder, mixing into solution and injecting into a person who has become so hypoglycaemic that they are either unconscious or otherwise unable to consume any high glucose treatment. Glucagon is a great treatment, but the current delivery method is pretty complex. I first came across the 'nasal puff' concept via Mike Hoskins in the US, who posted on Diabetes Mine following involvement in a trial of the device. It's ingenious! Developed by a tiny private company with parents of T1D children at the helm, it seems driven by passion and practicality.

I know that when I have tried to mention Glucagon kits to anyone among my family and friends they immediately take on a distinctly 'rabbit in the headlights' expression and start mumbling about "erm... yes... or I'd call an ambulance". The idea that at a time of extreme stress, possibly in the middle of the night, someone entirely untrained in giving injections would be able to calmly proceed through a multi-step process of mixing, drawing up, selecting injection site and administering (especially if I were thrashing about) seems crazy.

This new treatment involves simply 'puffing' dry powder up the nose. It doesn't need to be inhaled (designed for people who may be unconscious), simply pushing the base of the container ejects a cloud of dry glucagon into the nasal passages where it is absorbed directly. No needles, no mixing, no faffing about in the dark.

The device is not currently available, but phase 3 clinical trials are currently underway and I will watch the story with interest.

Disclosure: I was not paid to mention Locemia's nasal glucagon device (ha! chance would be a fine thing!). It just sounds like a great idea.