Posted by on Monday 18 November 2013

World Diabetes Day 2013 - a late update

As you may or may not know, it was World Diabetes Day on 14th November - Thursday last week. It doesn't always get a huge amount of attention here in the UK, but early on Thursday morning I saw a tweet from someone who said that while they usually spare their Facebook friends and family any boring diabetes-related shenanigans they had decided to post something to Facebook every time they interacted with their diabetes care. That sounded like a brilliant and very simple way to help raise awareness so I shamelessly stole the idea and did just the same on my personal Facebook account. I was absolutely overwhelmed by the reaction from people, pretty much all of whom know I have diabetes (I've never hidden the fact) but who had not perhaps realised the amount of day-to-day faffing about that T1D management involves.

Better late than never - here's what I posted:

10.20 14 November 2013
Today is World Diabetes Day, so I've decided to bore you all senseless with some of the diabetes-based nonsense I have to do every day.
Before breakfast I checked my blood glucose level by taking a tiny blood sample from my finger and applying it to a test trip in my meter. The result at 7.10 this morning was 5.8mmol/L. That's pretty much spot-on. So I took some insulin, waited 30-40 minutes for it to get going, then ate some toast.

It's now a few hours later and I just felt unexpectedly hungry so checked again in case that meant my breakfast dose had been a little out and my blood glucose level was now running a little low. Nope. it was 7.8mmol/L.

That's a smallish rise after breakfast but within acceptable limits. I will need to check again at lunchtime.

12.32 14 November 2013
OK. So it's Diabetes time again. I need to get ready for lunch. At breakfast and lunchtime taking my insulin about 30-40 minutes before eating helps to keep my levels in check after those meals (bizarrely I don’t usually seem to need to do this for evening meals). I've tested at 5.8mmol/L again - this means my breakfast dose worked perfectly, bringing me back to my pre-breakfast level after the 4 hour duration of the insulin has passed.

I have not eaten anything since breakfast because, to be quite honest, juggling multiple overlapping doses of insulin in a short space of time to allow for the carbohydrate in a snack is such a hassle and provides such added complexity to my day that I find I'm better off just not bothering. It’s not that I can’t eat biscuits or cake if I want to... it’s just that the pleasure of those things is offset by the guesswork and calculations involved in trying to achieve good levels day to day.

I've estimated my lunch at 45g of carbs. I need to know pretty much exactly how many carbs are in *everything* I eat so that I can calculate insulin doses correctly. Fortunately I have a helping hand as my insulin pump does the maths for me. At 12.29pm I took 4.05u of insulin. I will have to keep an eye on the time now and aim to eat around 1pm otherwise the insulin will kick-in before my food and I risk my blood glucose level dropping too low.

Today is World Diabetes Day - this is what it's like living with Type 1 diabetes.

15.32 14 November 2013
More diabetes goings-on documented as part of World Diabetes Day. Just checked my BG (now you're used to the idea I'll slip into jargon) and it was 9.9. Not a disaster, but not ideal either. I should aim to be below 9.0 after meals to avoid future 'fun and games' like blindness, heart attack, kidney failure, amputation and so on (cheery!).

I had exactly the same lunch as yesterday (this makes things easier for me as it reduces the number of variables involved in my day to day decision making). But... I also made small changes to my 'background' insulin pattern yesterday to prevent some lower levels I’ve been having recently and it seems I've overcooked it a little.

I've added an extra unit to correct the high level and have re-tweaked my afternoon pattern again for tomorrow. This is one of the main advantages to an insulin pump (which I now use instead of multiple daily injections). The degree to which you can fine tune doses offers potentially amazing accuracy of doses and delivery. The drawback, of course, is that you have to be physically attached to a small pager-sized medical device 24 hours a day... But the benefits soon far outweigh any concerns you have over 24/7 attachment.


18.11 14 November 2013
World Diabetes Day again. Evening meal is pasta. And I'm still 9.1 despite the earlier correction which is well under way. Adding extra correction to meal dose.

18.50 14 November 2013
I’ve not just tested, but I am still thinking (worrying) about how this meal dose will work out. The carbohydrate in pasta usually digests fairly slowly for me, so sometimes I use options on the pump to 'spread' the insulin delivery over a longer period. This time however I have taken all the insulin up front as I'm high to start with and the insulin will probably struggle to keep pace with the food. Of course this means I will have to keep a closer eye on things this evening, just in case my guesswork as to what might happen between the food and insulin turns out to be completely wrong and I end up worryingly high or dangerously low. Today is World Diabetes Day - this is what it's like to live with T1 diabetes.

19.40 14 November 2013
Another update (are you all bored yet?) Tested an hour and a half after eating and BG was 10.3 Now even though this is *still* too high, it is actually encouraging because it suggests only a very small rise in BG level while the initial burst of glucose from food would be expected and insulin should be active. This means there is unlikely to be any issue with the cannula (the small tube under the skin through which the insulin is delivered) and/or the pump itself. If I had not eaten anything I would probably be well on the way back down now - possibly too quickly! Another check in an hour or two should provide a better picture.

Posted as part of World Diabetes Day. Millions of people all over the world - parents, children, teenagers and pensioners - are making similar judgements today and every day.

20.27 14 November 2013
More World Diabetes Day fun and games. Well, another test reveals my BG has now risen to 12.3mmol/L. Disappointing. I'm lucky in that occasional short-lived forays into double figures/teens don't make me feel awful like they do for some people, but it does mean that I don't necessarily feel it when my BG is rising and I'm expecting it to be falling. I have to find out by testing. I still have over a unit 'active' from my meal dose, but by now I should be approaching normal levels. I've corrected again, but this time I've dosed more than I should need in order to reduce my BG more quickly and will top up with some carbs later if I need to. Yesterday's adjustment which was intended to prevent low levels seems have been a little over enthusiastic for the afternoon and evening. I will be tweaking again it seems.

21.20 14 November 2013
Another hour further on... Another test. Still up at 11.9. Sometimes 'rapid acting' insulin can seem anything but. It would be tempting to add a little more insulin into the mix, but according to my pump I still have at least 1.8u still active. Of course, the pasta I ate earlier is probably still pushing BG upward to some extent, but it's often tricky to work out quite how much of a food's BG raising potential will already have passed. Today is World Diabetes Day, and I much preferred how stable my BG levels were this morning.

22.40 14 November 2013
Today is World Diabetes Day and I've decided to post something here every time I do something diabetes-related today. I haven't given you the full picture of course... These are just the edited highlights. I've not mentioned each time I've looked to check how long it was since I did ‘x’ or ‘y’, to see whether or not I now need to consider doing something else. Since about 3.30pm my blood glucose levels have been higher than I would like. When this happens I can use insulin to bring them down into a healthy range, but I can't overdo it as the body needs a minimum amount of glucose to function properly and if I overcorrect I could easily end up hypoglycaemic (where the brain is starved of glucose and begins to malfunction).
My efforts to correct my high levels so far this evening have been less than successful. I am currently cruising at 10.5mmol/L whereas by now I was expecting to need to be eating some top up carbs. It is difficult to work out exactly what has gone wrong and where all that extra insulin has wandered off to, but having waited and tested and waited and tested all evening I've decided it's time for one last gentle nudge. I still have around 0.5 of a unit circulating from earlier but I've overridden the pump's cautious suggestion and added another 1.25u to make 1.75u in total. I would expect 1u to reduce my blood glucose level by a smidge over 3mmol/L in about 4 hours which *ought* to bring me to the mid-5s by around 2am. That's the theory anyway - if you've been sticking with this from the start you'll know it's not quite been working out as expected so far this evening for one of several hundred possible reasons. I now have to decide whether to set an overnight alarm for 2-3am to check again. Or just hope for the best and see how things are in the morning. As a halfway house I'll probably wait up another hour or so to see what happens. Fun fun fun!

23.57 14 November 2013
My last post for the day - you will doubtless be very glad of that. Just tested again and I've dropped down to 8.4 with 0.7u or so still active. That's much more promising. Not quite sure what happened, but it could simply have been a slight error in dishing out the pasta earlier. Even though the amount of pasta we cooked was carefully measured a spoonful or two too many on my plate could have easily caused that sort of havoc from a highish starting point. On the other hand it may be nothing to do with that.

Today was not a particularly tricky one - I've eaten only tried and tested foods that I seem to be able to manage more often than not... I didn't do anything particularly strenuous or energetic that might have dropped my BG... I wasn't under undue stress or illness, both of which can cause BG upheaval... But I still managed to make a bit of a hash of it levels-wise nonetheless. Even relatively ‘normal’ days can involve a mind-bending number of conflicting and combining variables to navigate around.

On the plus side at least I didn't crash from too high down to too low and back again, but it has been a fairly frustrating 'wait and see' evening.

It won't be World Diabetes Day tomorrow, but I'll still be weighing food, calculating doses and trying to work out how to keep things in some sort of balance. There are around 3 million people living with diabetes in the UK, and something like 10% of them, around 300,000 have type 1. Thanks for reading, and congratulations on all having fully functioning pancreases you lucky lot!

4 comments:

  1. Mike - get a CGM - it's so much easier, and you don't have to prick your finger so many times!

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  2. Hmmmm... Well if you're offering to fund the £3000-4000 a year for me, then I graciously accept.

    Sadly CGM is still not considered a mainstream treatment in the UK - there is no NICE technology appraisal, and no funding pathway apart from 'exceptional circumstances'. To be honest, much as I would absolutely *LOVE* a CGM I could not in all conscience even ask the NHS to consider a funding application - the potential benefits to my long term health and even my 'quality of life' simply do not weigh up against the obscene amount of money that CGM manufacturers currently charge. I can buy a fully functioning bluetooth-enabled phone on the high street for peanuts, but the same (or at least from a lay perspective surely quite similar) receiver technology with no screen, transmitter, buttons etc costs the best part of £400-£500 as part of CGM and is only guaranteed to last for 6 MONTHS!

    Built in obsalescence and pricing structure that simply makes no sense in a genuine marketplace, but seems ably supported by (non-UK) healthcare insurance models.

    [grumpy frown]

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  3. Hi again Mike - it doesn't cost anything like so much in the UK - I think the key issue is that the sensors are only licensed for seven days but do carry on working for a lot longer - you need to be scrupulously careful with aseptic technique when you insert them to avoid any problems with infection though, and do this at your own risk. In my experience it works out at about £20 a week for the sensors. Yes, the transmitters are only guaranteed for six months but in reality carry on for at least a year, and only cost £250 to renew. Whether the NHS should fund them is a huge issue. I'm sure the cost will come down, and the next generation of CGMs will use smart phones as the receivers. A lot depends on the motivation and education of the patient, but the benefits in terms of reduced complications and hypos very easily justify the cost. I'm on MDI (no pump) and it makes good diabetic control so much easier and very much less traumatic. I don't think I'd have been able to titrate the basal levemir doses so readily or balance my diet and exercise as well without a CGM. Very best wishes and well done for managing your diabetes so well over the years. Please forgive me for still posting anonymously at the moment.

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  4. I can't find a £250 transmitter after a quick Google... which is it?

    Dave over at 'Diabetes CGM Blog' recently listed these prices comparing Dexcom G4 and Abbott Navigator (hope it's OK to repost Dave!):

    Dexcom G4
    Receiver £650, Transmitter £300, Sensor (each) £62.50 officially 7 days

    Abbott FreeStyle Navigator
    Receiver £450, Transmitter £500, Sensors (each) £40.00 officially 5 days

    Taken from this post: http://diabetescgmblog.com/2013/04/01/dexcom-g4-vs-abbot-freestyle-navigator-ii-uk-cgm-price-comparison/

    I know many people can get 12 months out of transmitters and ush their sensors for 15 days or longer if they can be restarted, but I have also seen posts by people distraught at a transmitter failing at just over 6 months, or a £60 sensor that just didn't 'take' and needed to be abandoned.

    Being on a Veo, I could opt for Enlites of course and get the benefit of 'Low suspend'...
    Receiver in pump, Transmitter £490, Sensors (each) £55 - officially 6 days

    It just frustrates me that such incredibly useful and potentially life-transforming technology is priced out of the reach of so many people.

    I'm really pleased that you have been able to make the financial investment to access it though - there are more and more amazing accounts of self-funded CGM success which (I hope!) will add weight to the often slightly disappointing 'official' research results that seem to be keeping CGM on the fringes. The more people who can demonstrate real benefit in the real world, the closer we will come to CGM being more widely accepted by HCPs.

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