Shoot Up or Put Up

Dearest darling GP,

I moved my healthcare to your business a couple of years ago because my previous GP was failing to deliver. He was medically mediocre and administratively hopeless. I like your surgery because you take in a lot of trainee GPs. Terrifying as this may first sound, they’re actually rather good – they’re young and enthusiastic, they haven’t heard it all before so they actually listen to what I say and when they don’t know something they run off and check with a grown up, rather than just making stuff up. I find all that quite endearing in a doctor.

Overall, you’ve been doing very well. Medically you’re performing. You developed a worrying interest in delivering my diabetes care but I managed to steer you away from that and we’ve agreed that you won’t meddle in things that you don’t really understand. We’re getting along just fine.

Administratively you’re above average in my experience, although my benchmark for good GP admin is pretty low. If I ask for a repeat prescription you normally manage to issue one within 48 hours. And most of the time it’s more or less correct. You also get extra brownie points for not accidentally giving my medical records to a little old lady to read whilst she was in the waiting room as one of your predecessors did.

It’s not all good though. We’ve been having a little issue for a while now. You understand that I need blood testing strips and you’re happy for me to have as many as I need. You’re not misinterpreting any silly PCT guidelines about rationing strips like some of your less bright colleagues. More brownie points there. Sadly, while your intentions are good, your delivery is a little random in this area. If I request blood test strips sometimes I get them, sometimes I don’t.

We’ve talked about this and you explain that the nasty PCT won’t let you put blood test strips on my repeat list in case I order too many, start selling them on the black market and the NHS isn’t left with enough money to buy biscuits with. I explain I’m happy for people to put sensible measures in place to manage budgets, but we still need a process that works. At the moment if I order blood test strips I sometimes get them and I sometimes don’t.

You say that I should ask my pharmacist to check my prescription when he collects it for me. I say it isn’t his job to double check your work. You say I should highlight when I’ve requested blood test strips. I say the list I sent in only had 5 things on it and blood test strips were in bold size 14 font and you still managed to miss it. Short of sending a singing telegram I don’t see what else I can do.

For the love of god this shouldn’t so difficult. Please put a process in place that means I get blood test strips when I ask for them. I’ve spent a couple of years training you to deliver my healthcare and you’ve been doing it well, I don’t want to have to start all over again with someone new.

Lots of love

Alison

I’m back. Sorry it’s been a while, there’s been a lot going on and I have shamefully neglected the blog. I did have a lovely holiday though, sailing on the Turkish coast. As ever, I learnt a few new (and not so new) pearls of wisdom about holidays with diabetes: 

Lots of boats

• Diabetes junk and I will never get along. No matter how many times I travel, I still get irritated by the amount of diabetes junk I have to carry. It seems doubly irritating when I realise not only is my hand luggage weighed down by diabetes junk, but I’m also carrying round a redundant organ in the shape of a pancreas that isn’t pulling it’s weight  
• Insulin pumps survive a dunking in sea water perfectly well when you accidentally fall out of a dinghy whilst trying to get back onto your boat. A quick rinse in fresh water and it was good as new.  
• I get a bit scared when a storm blows up, we’re still an hour away from where we want to get to and the waves are crashing over the boat. At this point, as you head downstairs to pull out the life jackets and harnesses, it’s not ideal for the boat to plunge down a wave and bounce you across the boat, catching your pump tubing as you fly and ripping out your infusion set.   Once the husband was securely harnessed to the wheel I decided an hour without insulin would be preferable to trying to change an infusion set at sea in a gale. And no, the super quick infusion set removal didn’t hurt at all, but the bruise from crashing into the side of the boat was very impressive.  
• Sods law will always prevail. It’s 8am, we’re in a lovely little Turkish harbour. I’m in the cabin with my diabetes junk spread all over the place as I change my infusion set. The husband is on the loo. At that point I hear a lot of shouting as people try to tell us that some idiot has managed to pull up our anchor as they were leaving. Ten minutes later, all would have been fine. But no, all hell has to break loose when Captain Pugwash is on the loo and the crew is playing at being a pancreas.  
• Other sailors will always think your pump is some interesting boat gadget they’ve not seen before and will be hugely disappointed to learn it’s a life support system for the pancreatically challenged rather than a super dooper at sea navigation aid.  
• And finally, no matter how securely you clip the pump to your bikini bottoms, on a fortnight’s holiday on a boat you will catch the damn thing on a rope at least twice and kneecap yourself.  

 Other than that though, the diabetes was pretty plain sailing.

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?

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!

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.

I don’t remember being diagnosed and I’ve never been good at the “what’s your first memory” thing – I’m sure what I think are my first memories are actually just stories I’ve been told by friends and family enough times that I’ve absorbed them into my brain via osmosis.

However, as the broken pancreas has been a constant throughout my life, it’s given me quite a list of firsts that I do remember:

First time I met another diabetic: at a Diabetes UK family weekend. Quietly watching a very grown up 5 year old boy do his own injection and thinking “freak!”. Then realising that I did that too.
First time I was sick on a doctor: on a Diabetes UK children’s holiday aged 6. I think even the Dr was amazed by how much vomit a 6 year old can produce.
First time diabetes made me look like a genius: when asked to name an organ of the body at school, my classmates went for the ever-so-dull heart, lungs, kidneys. I was the only one who knew what a pancreas was.
First time I realised diabetes stops some people doing stuff: aged 9. I was gobsmacked. It had never even crossed my mind that diabetes could stop you doing anything.
First time I had fish and chips: aged 10 when I got my first Novopen and could eat more than a miniscule number of carbs per meal.
First time I realised Dr’s weren’t always that clued up about diabetes: hearing a Dr shout at a pancreatically challenged child on the ward who was running around “It’s no wonder your blood sugars are so high when you’re running around so much“.
First time I realised quite how scary complications can be: when I got a slightly abnormal kidney test result and having discarded all sense of perspective and spent a short while with Dr Google had virtually signed myself up for dialysis by the end of the day.
First time I realised the value in double checking stuff: when the second kidney result came back perfectly normal, just like every one since.
First time I realised not everyone shares my expectations of my diabetes: when my optician told me that some retinopathy is to be expected after 25 years of diabetes. Factually correct, but a million miles away from the expectations I like to set for myself.
First time I discovered the power of the internet and diabetes: when I was thinking about getting a pump and CGM and wanted some real life stories from people who’d used them both, rather than just the marketing spiel from the manufacturers. I got all that plus a huge wealth of diabetically useful stuff online.
First time I realised what a shock diagnoisis must be: when I started using my insulin pump after 23 years of diabetes and felt like I’d entered a whole new world.
First diabetic blog post: taking a step into the great unknown of cyberspace to look back on 25 years of being pancreatically challenged

Any more interesting diabetic firsts out there?

I recently discovered that if I spend long periods of time online looking at websites that contain images of carb heavy foods, my blood sugar rises. It seems that I need to take account of the carbs I’m exposed to online when calculating my insulin dosage.

Sorry, that’s complete garbage, it just sprung into my head when I wrote the title of the post and seemed a more interesting opening paragraph than “I’ve found a cool online carb counting course”.

That is what I actually wanted to say. I have found a cool (and free) e-learning course that will help you to work out how to count carbs and adjust insulin doses accordingly.  And if you’re a particularly interesting diabetic who thinks their life should include alcohol, exercise and eating out, there’s an advanced section which covers that too.

If you’ve heard peeople enthusing about DAFNE (Dose Adjusting for Normal Eating), BERTIE and various other amusingly named courses that help you to work out how to adjust your insulin according to what you eat and do, this is a very similar thing. Except it’s online rather than in a darkened room in a hospital basement.

Take a look - www.bdec-e-learning.com

Read on – you need to do something here, it’s important.

I have on occasion had a cynical little rant about the relevance of some diabetes research to improving lives today.

I have also spent many a meeting in various diabetes forums expressing the need for us to research the day to day issues impacting people with diabetes.  A cure - like a lottery win and a trip to the moon - would be marvellous but not something I’m scheduling in my diary any time soon. What I’m really interested in is answering the slightly less sexy but still hugely useful questions about diabetes.  How do we get new developments in diabetes care into general use more quickly? What is the best way to help a teenager take over management of their own diabetes? Do low carb diets deliver long term diabetes benefits? ie is it worth me making the huge sacrifice that is giving up pasta?

So you can imagine my excitement when I saw this little beauty in Diabetes UK’s Balance magazine. The Type 1 Diabetes Priority Setting Partnership is trying to identify the most important research questions for the treatment of Type 1 diabetes. Hurrah!

People of the diabetes online community, please head on over to www.ukdrn.org/jlasurvey.html forthwith, or at least before 28 May 2010. This is your chance to have a say in the diabetes research agenda. It’s a really simple survey, they just want to know what questions you want answering about Type 1 diabetes. To actually be asking people with diabetes what research they’d like doing is sadly quite radical, so please seize the opportunity to have your say. We’re the experts in our own diabetes so make sure you share that expertise.

And once you’ve submitted your questions to the survey, if you fancy sharing them in the comments section below that would be great – I’m fascinated to know what questions people want answering.