Shoot Up or Put Up

A cure for diabetes is found!

Just imagine if there was a cure for diabetes tomorrow. Say if some mad scientist came up with a magic serum that restored one’s beta cells to full production and health within a day or two. (One imagines said scientist working from some sort of dark, gloomy castle, surrounded by angry storm clouds and frightened villagers, but I digress). That would be pretty cool, no?

I don’t think any of us would doubt that it would be rather nice; but wouldn’t it be rather odd too?

I don’t know about you, but I’m utterly programmed to do diabetes now. At about 7.30pm every evening a little mental alarm goes off in my head to bung in my lantus. Without relying on watches, clocks or alarms, I rarely miss lantus time by more than half an hour nowadays.

I also automatically guesstimate the carbohydrate content of everything on plate from about 50 yards. I can’t help it. I even do it with other people’s food – telling friends that they would need to put in about 9 units for what’s on their plate. Well, that’s what they would need to if, in fact, they were actually diabetic.

The list goes on, I find it bordering on impossible to leave the house without checking I’ve got my kit – finger pricker, insulin and a plentiful supply of fruit pastilles. If I go out without a man bag containing all said kit I feel positively naked.

So I wonder if our mad scientist friend did come up with a magic serum whether we diabetics would need to be gradually weaned off the diabetic way of life and back into normality. The shock of not having to do all these things might just be too great. Perhaps we would have to  spend the first few months injecting saline instead of insulin – much in the way that ex-smokers can buy those stupid looking faux cigarettes, giving them the feeling of clutching something cigarette shaped.

Who knows? But if such a serum was invented I wouldn’t be too worried kicking the diabetes habit – I’d be busy fighting my way to the front of the line!

Some rather flash medical alert jewellery

Nearly five years after my diagnosis of Type One, I’ve finally got around to getting myself some medical alert jewellery. I thought it was time that should I be found collapsed in an Edinburgh gutter late one night then the ambulance men might have a chance of identifying what the problem might be. The fact that I’m more likely to be in that state because of too much Scottish wine than anything diabetes-related is, of course, neither here nor there.

The reason I’ve put it off for so long is that I don’t really wear jewellery, aside from my wedding ring which never leaves my finger (resulting in it nearly being lost down drains, in rivers, inside cows, etc.)  I’ve just never been one for wrist bands, signet rings or medallions (thank God). I’ve never really felt the need for any bodily adornments, so in addition to jewellery, the prospects of getting a diabetes tattoo also seem pretty limited.

So what changed my mind? I suppose I just thought it was a sensible thing to do. Now that I am inexorably advancing into the twilight years of the early thirties, I suppose I’m gradually getting more sensible and wise. Long gone are the days of all night Scrabble sessions and drinking Horlicks ’til dawn. Sigh, happy days; happy days.

The other thing that changed my mind was actually finding some medical alert jewellery that was actually quite nice. The general rule that seems to apply to such jewellery is a) discrete; b) practical; c) stylish – pick two. However, over on www.icegems.co.uk I did manage to find a pendent and a wrist band that did actually fit all these criteria. I then arranged to have them engraved with my name, date of birth, diabeticness and my wife’s mobile number. And very nice there are too. I actually now wear one or other of them most of the time.

This means that, much like a family pet, I can be let out on my own to wander and can be returned to my owner if found lost or collapsed in a hypoglycemic heap. Comforting for all concerned, I guess.

My HbA1c results show that my pump and CGM are working for me. But they’re not a cure so what is it about using those tools that’s made the difference?

Metronic Paradigm pump & CGM

Doing the research

I read Pumping Insulin: Everything you need for success on a smart insulin pump by John Walsh.  It’s a weighty tome, but it helped me work out how to get the best out of my pump.

Beyond that, I think there are 6 main areas where I’ve seen major improvements:

1. Overnight levels.

Before – nights were a bit of a blood sugar rollercoaster ride of drops at 3am and rises at 5am. This meant I had to go to bed higher than I wanted to avoid hypos and I’d wake up higher than I’d have liked.

After – I can now go to bed at a 5 and wake up at a 5. I have the basal rate on my pump set to decrease at 1.30am, to ward off the 3am low and then increase at 3.30am to stop the 5am high. Looking at the CGM graphs of my overnight blood sugars helps me adjust the basal rates.

The CGM also showed that as soon as I get out of bed in a morning my blood sugar rises, even if I have no food. Now I take 0.5 units as soon as I get up to counter this.

2. Post meal peaks.

Before – I injected when the food was on the table and I could see what I was going to eat. Or sometimes I’d inject afterwards if I wasn’t sure how much I’d eat. If I was being good, I’d do an injection before a meal and then another after, but that wasn’t something I did often.

After – I conservatively guestimate how many carbs I’m going to eat and bolus for that about 30 mins before I eat, more if CGM shows I’m high. It’s no hassle, I just press a button. Then, when the food arrives I’ll put more insulin in if required. Dessert? Press the button again.

The CGM helped me see the impact of not injecting in advance of meals. I’d always known the theory, but nothing brings it home like an upwardly rocketing CGM graph. And nothing is more satisfying than seeing a gentle rise and fall after a meal, rather than a massive peak on a graph.

And then there’s the bolus wizard on the pump – I always thought I had no need for a glorified insulin calculator but I was wrong, when you get it set up right its much better at working out how much insulin I need than my finger in the air guestimates.

3. Dealing with certain foods 

Before – pizza was a nightmare, if I injected for pizza as I ate it I’d be hypo in a couple of hours and then high for about 12 hours after that.

After – I use a dual wave bolus on my pump when I eat pizza. I set it to deliver some insulin as I eat, but then spread the rest of the insulin over the next 5 hours. The CGM lets me track whether I’ve got it right, and take more insulin early if I see I’m rising. Same goes for plenty of other foods too. 

4. Less time spent flying high

Before – I’d only know if I was high when I did a blood test. If I was having a life and didn’t test for a whole afternoon, that would mean I’d be high for 5 hours and not know.

After – I have the CGM set to alarm if I go above 9.5. Plus,  if I look at the CGM and see that I’m rising fast I take more insulin to try and head it off early. That means when I mess up with carb counting or hormones kick in or whatever other reason means I end up high, I spot it early and take action quickly so I don’t rise as high or stay there for as long.

5. The little things

Before – a biscuit during a meeting or a couple of sweets stolen from a friend weren’t worth an injection.

After – I bolus for pretty much everything (assuming I’m not low of course). I’ll take 0.5 units for a small biscuit or a couple of sweets, it’s only the push of a button and it keeps my levels pretty flat.

6. Correcting highs

Before – If I was a 7 I couldn’t really do anything about it – I didn’t need a full unit of insulin so I was stuck with it.

After – Now, if I’m 7 I’ll take 0.3 of a unit to bring it down to around 5.5. A quick glance at the CGM lets me see where I am and whether I’m rising or falling. It puts the number in context – on it’s own a reading of 4 means I need to eat. With the CGM, a reading of 4 that’s been like that for several hours while I’m watching telly and have no plans to move needs no action at all.

So, the pump and CGM haven’t given me the magic bullet to diabetes control, but they’ve let me tweak my control is several key areas that all add up to better overall results. And better quality of life. It took a lot of research and effort to get to this point, but it works for me and importantly, it’s sustainable. I can manage my diabetes like this long term and have a life.

Beware, what follows has somehow turned into a slightly bizarre piece using animals to illustrate HbA1c result variations. I don’t know where in my mind this came from but bear with me, the real point is that my pump and CGM have made a real difference to my long term diabetes control.

A year ago I graphed my HbA1c results for the first timeand was pleasantly surprised (read absolutely gobsmacked and delighted) with the results my pump and CGM had helped me to achieve.

Pre-pump the graph looks like the results of an Alison vs kangaroo wrestling match. If I tried really hard I could tie that kangaroo down and get my HbA1c around 6.5. Once, I managed a particularly brilliant left hook and floored it to 6.2. Sadly, as kangaroos and HbA1cs are apt to do, the damn thing always bounced back up to around 7 whenever I took my eye off the metaphorical kangaroo.

Then I got the pump and CGM and the graph looks like I taught the kangaroo to ski (yes, I am starting to regret this bouncing kangaroo analogy but its too late now). The downhill ski slope 4 months after starting on the pump was the last significant gradient. From then on the kangaroo lost it’s bounce and became more of an armadillo, wandering gently through the meandering flatlands that made up the next 2 years. My HbA1c flatlined, the slight twitch as it varied between 5.5 and 5.8 the only real sign of life in the graph.

Recent forum debates about whether anyone had graphed the impact of pumps on HbA1c prompted me to carry out my first annual graph update. The result leaves me feeling a bit like Mary – just a little contrary.

I’m delighted to see that there’s been no change; I’ve flatlined for another year with HbA1cs between 5.6 and 5.8 and no significant hypo issues. If I didn’t know better I’d swear I must be dead, such HbA1c consistency is not something I’ve been used to over the last 27 years of diabetes. I still have bad days, random blood sugars, hypos, times when I forget to bolus and times when I’ve had enough of the whole thing, but they’re much rarer now. I’ve found the tool that lets me manage my diabetes as I want to and the kangaroo, if not quite dead, is certainly enjoying a long hibernation period.

So why do I feel so contrary? It leaves me with little more to say on the subject than I said a year ago. What use is that when I’ve got a blog to populate?

A diagram of Tim's pancreas, yesterday

Just the other day we had an interesting discussion over on the Shoot Up forums (there are some sensible debates over there you know. It’s not all weak puns and inane banter. Well, not entirely).

We were discussing the difference between people’s experience of diabetes depending on whether they were diagnosed at a very early age (and so knew nothing other than injecting) or whether they were diagnosed much later in life and so could remember what it was like to have a working pancreas.

I was diagnosed with Type One at the relatively ancient age of 28 and so spent a healthy chunk of my adult life not knowing what the hell diabetes was – something to do with chocolate and injections or something or whatever. So I very much knew what it was like not be in the failed-pancreas club.

Immediately after diagnosis I was just pleased to have found out what had been wrong with me all those months and thankful I was no longer drinking pint after pint of water and feeling absolutely wreaked all the time. However, as the days passed, I did have the occasional bought of self-pity (and why not?) in which I shook a metaphoric fist at my broken pancreas. As we all know, getting the balance of good diabetes control right is not easy and occasionally my frustration at not getting it right all the time turned to regret at having damn diabetes in the first place.

But since those early days, I’ve not really looked back with any sense of regret about being struck down with diabetes. It sounds trite, but you get on with whatever hand of cards you’re dealt with. There’s no going back to having a working pancreas and a cure is very unlikely. Unless, of course, you have a handy TARDIS to travel back / forward in time. Which I don’t. Pity.

So, no, I don’t harken back to the days before my diagnosis – I just keep a stiff upper lip and get on with it. But what do you think? Is it best to have had a pancreas and lost it or to have never have a pancreas at all?

John O'Groats, last week

Before I mislead anyone about the title of this article, just to let you know that it’s not me that’s cycling from John O’Groats to Land’s End – it’s my chum Stephan. Just so that’s clear. I don’t want to give the impression that I’m enough of a loony to cycle just under a thousand miles in a fortnight.

Now that’s clarified, if you didn’t already know (I’m mainly aiming this at our non-UK readers) John O’Groats is in the very top right of the UK and Land’s End is way down in the bottom left. In between is about 350 miles of Scotland and about 650 miles of England, so it’s quite a long way.

Anyway, Stephan stopped off with us in Edinburgh on his way down this weekend. After filling him up with pasta, beer, cheese and other lovely carbs on Saturday night, I dusted off my bike and accompanied him on the first part of Sunday’s ride from Edinburgh to Langholm.

Unfortunately I wasn’t able to go wildly far as Stephan was taking a short cut over the Pentland hills – too rocky for my poncy roadbike with its tiny, thin tyres. So we said our goodbyes and I headed back via the many little lanes that thread their way through the Pentlands, which – despite the pissing rain – was rather nice.

However, this was my first trip out this year on my bike and unfortunately my pancreas decided not too co-operate. As usual, I stuffed in half my amount of insulin for breakfast and set off with a backpack full of Lucozade and Fruit Pastilles which I scoffed down from time to time. But on my return I was a lowish 4.0 – and dropping – so I had lunch without injecting anything. Up I went to a modest 11 two hours later, two units of humalog and I dropped like a stone back down to 2.9. Bah! Again for dinner I put in a very small amount compared to what I was eating and two hours later I was only up at 8.0.

So, there we have it, one bit of moderate exercise and I’m wildly sensitive to insulin. One post-cycling unit seems to be equal to about five lazy units. Judging the amounts is, as always, good wholesome fun and I made a mental note to seriously reduce the amounts I put in next time I’m out on the bike. What top tips do you have for exercising without hypo misery?

While I’m here, I’ll finish off by telling you that Stephan is doing his ride partly because he’s insane and partly to raise money for Macmillan Cancer Support and Dorothy House Hospice – both wildly worthy causes. If you fancy flinging him a few pennies, his donation page is here: http://uk.virginmoneygiving.com/stephanhunt. If you’re just interested in reading about what it’s like to cycle from John O’Groats to Land’s End his blog (which he’s updating from the road) is here: http://2010jogle.wordpress.com/. If nothing else, drop him a comment to say hello – it’s lonely out on them there roads!

I had a minor op earlier this week that involved being knocked out for a while. It was nothing too serious and I will definitely live, but it’s amazing how much brain power the diabetes side of things took up.  

I had to fast from midnight before my op at 6 am. From previous experience being first on the operating list is a definite bonus that comes from being pancreatically challenged.   I was allowed water between midnight and 6am, then nothing from 6am onwards. Tough decision one – reduce the overnight basal or not? Logic says avoid hypos when fasting at all costs so reduce insulin and ride those highs. But I’d prefer to go into surgery at a reasonable level, I don’t like the idea of all that extra glucose surging around while my body is trying to recover.  

Decision: stick with normal basal rate, I usually wake up between a 5 and a 6 and I think the stress of the op will push that up. Back that up with the safety net of setting the alarm for 5.30am so I can do a test and if I’m too low, I can take some apple juice before my “drink nothing or die” deadline of 6am.  

Result: wake up at 5.30am as a 6.6, trending slightly upwards, decide that’s pretty safe when combined with the boosting effect of stress and the fact that I always rise a bit when I get up.  

7.30am – blood sugar now around 9 and holding steady. Any other day I’d put in at least 0.4u to bring it down a little but I sit on my hands and do nothing.  

8am – having agreed with the anesthetist that I’ll manage my diabetes as I’ll only be knocked out for around 30mins, reassure them that I’m an 9 and spend the next 5 minutes explaining the wonders of the pump and CGM, neither of which they’ve seen before. I’ve turned all the alarms off on the CGM, and clipped the pump on my hospital gown right next to my sensor so they shouldn’t hear a peep out of it during the op. My final brief to them is that if there are any problems diabetes wise, please consult the husband (I suspect they would completely ignore this request, but I have to make it to give me confidence, I don’t like the idea of leaving diabetes in the hands of surgeons and anesthetists, lovely as they are, they’re not great at diabetes).  

9am – come round, take painkillers, check CGM. I’m a 10. Celebrate that nothing went awry diabetes-wise and take some insulin to start bringing that 10 down a bit, especially given I’ll be doing nothing for the rest of the day. In my mind I can see all those glucose molecules laying out the welcome mat for infection and slow healing.  

So, all in all it was thankfully uneventful from a diabetes perspective. I’ve spent a very quiet week doing nothing very much more stressful than taking painkillers and watching daytime TV whilst constantly increasing basal rates to compensate for lack of activity. Surgery must be so much easier without diabetes.

Diabetes is in my life everyday – living with it, blogging about it, speaking to other people with it. That makes it a bit hard to get it into perspective. Some numbers about the pancreatically challenged masses in the UK may help, all shamelessly cribbed from Diabetes UK’s latest impact report (apart from the panda bit, obviously).

An even rarer breed than me

 In the UK:

1 person is diagnosed with some form of diabetes every 3 minutes – not a very cheery story, but it’s nice to know I’m part of a growing market, it certainly gives me more power as a consumer of diabetes junk.

2.6m people have diabetes – that’s about 4% of the UK population. Of course that includes everyone – type 1, type 2 etc.

Those of us with Type 1 are a rarer breed; there are around 390,000 of us including 21,000 children. 

Between us all, the pancreatically challenged hoards consume £1 million an hour of NHS budget. I’ll argue to the end of the earth that we’re worth every penny, but just think how much that could be reduced by if we got a bit of efficiency into the system.

When it comes to those of us with Type 1 who use an insulin pump, we’re not quite as rare as the giant panda, but any self respecting, anorak wearing diabetic-watcher would be excited to spot one of us in the wild. We make up just 2% of the Type 1 population, that means there are fewer than 8,000 of us in the UK.

If I want to bathe in my relative uniqueness, I should stay in the UK because in other European member states 10-20% of Type 1’s use pumps. Because on most days I am able to see past my own ego and into the harsh realities of life I take that as a very useful stat with which to rally the troops about our appalling inability to get new technology into everyday diabetes care.

And what about that little talked about sub-species of which I am one. The robots of the diabetes world with their subcutaneous sensors and wireless transmitters – the Type 1 with a pump and CGM? We’re such a rare breed I can’t even find a number for us!

A typical diabetic man and woman, yesterday

The other day, with nothing better to do, I was idly looking through the statistics which are generated by our Facebook page. Facebook handily gives administrators a breakdown of the demographic, Zeitgeist if you will,  of our page. Given that users give away a whole load of information about themselves on their profiles, said breakdown is actually pretty detailed.

The main statistic that leapt out at me was the male to female balance. Apparently males make up 23% of our fans and females 72% (I’m not sure what happened to the other 5%). I then had a quick tally of users who’ve signed up as registered users of the blog and forums here at your soaraway Shoot Up and the ratios were pretty much the same, with only a slightly higher percentage of males than Facebook.

Obviously the male to female ratio of diabetics is pretty much 50-50, so why does the blog have this bias I wonder? Are women more interested in their health than men and so seek out other sources of information on the Intermaweb? Do men just grin, bear it and ignore advice from anyone else? Do men just hate sharing stuff about their health problems?

I haven’t a clue and I’m certainly not going to share in public. Perhaps our female readers might like to discuss it below, while us men clam up.

I must be brave. I must face my fears. I can’t keep avoiding it. I’ve been busy at work. Its the wrong phase of the moon and the dog ate my homework. All good excuses but I’ve run out of road. I have to take the giant leap.

GP studying hard to learn about diabetes

My GP surgery have been harassing me for months. One of their chaps has now read his full quota of articles about diabetes in Womans Weekly, Men & Motors and Fishing Today and is now kindly going to share that knowledge via the medium of a diabetic clinic. (Note: all speculation on the potential qualifications of said GP to deliver diabetes care is based on nothing more than too many bad experiences with Dr’s who like to pretend they know more than they do which have led me to be very wary of people claiming to know about diabetes).

I’ve been stalked by the Drs receptionist for the last 2 months, begging and pleading for me to make an appointment. This naturally makes me wonder quite how much money the GP gets paid for every patient who uses this clinic because I haven’t felt so wanted since a spotty 13 year old had a bit of a scary crush on me in high school.

Previous experience of GP diabetes care hasn’t been good. Anyone who starts a conversation with a young woman with ”do you take tablets for it” is off my list. “Diabetics can’t have their tonsils taken out” and ”you should expect to have complications if you’ve had diabetes over 20 years” were also uttered by GP’s who supposedly had their Brownie badge in diabetes. The highlight was definitely the incredibly useful “if your blood sugar is high, you need to take more insulin” . Proof indeed that they’d read the first chapter of “Diabetes: The blindingly obvious” but sadly hadn’t progressed to “Diabetes: It’s not quite as simple as it may first appear”.  Little gems like that tend to undermine your faith in the system.

I already attend a great hospital diabetic clinic. I’m struggling to see what I’ll get out of this – all my numerous test results are up to date, I’m muddling along quite happily and I really don’t need any more help. Sadly, I’ve put this off long enough. I know from previous avoidance tactics that eventually my dealer will start withholding my insulin fix until I go and see them.

Ironically, I am quite a supporter of GP based diabetes care. I’ve met incredibly knowledgeable GPs delivering top class diabetes care to (mostly) type 2′s. I just haven’t been lucky enough to experience it personally and seem to have spent every diabetes related GP appointment over the years providing free education on living with type 1. I’m quite happy to do that and even throw in a free insulin pump tutorial at the same time, just let’s not pretend its you doing me the favour by letting me be there!

So, now I’ve delayed the inevitable a bit longer by blogging rather than making an appointment, I’d better get on with it. Although my office is looking very messy, I might just give it a bit of a tidy first.