Libre Limbo

As of the beginning of April the new national NHS England criteria for obtaining Freestyle Libre on prescription came into effect. This is who it says should have access to Libre on the NHS:

1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment
2. Pregnant women with Type 1 Diabetes -12 months in total inclusive of post-delivery period.
3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management. 
4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate adjunct support. 
5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self-funding.
6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation.However, if the person with diabetes and their clinician consider that a Flash Glucose Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.

Other requirements:

1. Education on Flash Glucose Monitoring has been provided (online or in person)
2. Agree to scan glucose levels no less than 8 times per day and use the sensor >70% of the time.
   
3. Agree to regular reviews with the local clinical team.
4. Previous attendance, or due consideration given to future attendance, at a Type 1 diabetes structured education programme (DAFNE or equivalent if available locally)

Well this all sounds very promising for my perforated fingers... but unfortunately I find myself somewhat in Libre limbo.

I had my annual toe-tickling / BP / weight check appointment at my GP surgery towards the end of March, and mentioned these new criteria and asked about Libre. The nurse who runs the diabetes reviews at my surgery is also one of the DSNs at the hospital pump clinic that I attend, and was able to tell me that all Libre requests in my area were going to be handled in 'secondary care' (that's 'at the hospital' for those that don't speak fluent Healthcare Professional). The suggestion made to me was that since there was not really time in people's regular clinic appointments to deal with all this stuff, that special extra sessions would be being arranged for anyone who was interested in Libre.

At some point fairly soon I'm pretty sure I'll be contacted for my annual* pump clinic appointment (last one was over a year ago). So now I don't know whether to wait and see whether I get an appointment and ask the same nurse I saw a few weeks back (but sat at a different desk) whether I can get another appointment at one of the Libre sessions. Or whether I should try to work my way through the labyrinthine appointment telephone system to try to speak to someone and ask a) if they've ever heard of these extra clinics and b) whether I can come. Then wait for that appointment to come through and see what they say.

* actual timings may vary

Frankly the very thought of it all is exhausting, and I am unable to even summon the energy to decide which of those options is the least teeth grinding, let alone make any of the necessary phone calls.

EDIT: The day after I posted this, I got the letter to book my appointment for pump clinic, so it looks like I'll be rolling with option 1. Next available appointment was mid July, so I've a little while to wait yet I think.

In other Libre news, as part of my position as one of the PWD representatives on the Diabetes Technology Network (DTN) I was involved in reviewing and contributing to a set of excellent video resources to help both people with diabetes and their families, along with nurses and clinicans get the most out of the Freestyle Libre. As part of the project I offered my own meandering thoughts on living with Libre, and took part in a live 'webcast' of the videos. If you missed it you can catch up with the videos and also a recording of the Q&A session on the Association of British Clinical Diabetologists website. The full set of videos and further webcasts will be added as the weeks go by and in all should provide an excellent source of information and guidance as more and more people get access to Freestyle Libre.

Disclaimer. DTN/ABCD paid my train fare to get to the initial meeting to discuss/review the course content, and then to the video recordings. They also gave me a thank-you card with an entirely unexpected voucher in it which was very lovely of them. I was not paid to take part or write this post, and all opinions shared are entirely my own. I mean... who else would want them?

Appointments, priorities and the importance of buy-in

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

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

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

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

But.

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

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

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

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

The first night.

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

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

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

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

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

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

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

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

This was a mistake.

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

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

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

What have I learned?

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

Thanks, as ever, for reading.

New Clinic vs Old Clinic - Guest Post by Lucy.

After the excitement of Saturday's #t1talk and with the kind permission of someone I have only ever met 'electronically' on a forum, I am posting this account of a patient experience in clinic. For someone who has really struggled in the past, this new patient-centred approach has been nothing short of mind blowing:

"I honestly left feeling quite stunned and shocked, and with the thought "have i just walked out of some parallel universe?". It was a wonderful example of how things should be, and did wonders for my confidence in ability to communicate my own thoughts and feelings at appointments, something I've previously struggled with a lot." Lucy.

Well, as some of you may know I've been asking for a couple of years at least to switch from one local hospital to the other, due to not being happy with the way I'm treated at the hospital I had been going to. After my last appointment there, I was so surprised and upset at what happened that I went and saw my GP, explained how I felt whilst holding back the tears, and he asked me to write a letter to the consultant explaining what happened from my point of view. I'm not one for complaining but for the first time, as instructed, I wrote a 2 page letter explaining where things went wrong, asking for further explanations of the decisions I disagreed with, and backing up my point of view with evidence from official bodies.

So it was very exciting this week to have my first appointment at the other hospital. There was a bit of mix up with the appointment letters going to the wrong address so it was all a bit sudden but I got there. I don't want to name the hospitals, as I'm sure others have good experiences at the other hospital, but some of you will know where I mean.

Usually I leave appointments and start crying. I left this appointment feeling like I'd left a parallel universe.

My appt started promptly and lasted over half an hour. The nurse introduced themself and told me their name and role etc.

It is a very nurse led clinic. There are consultants too, but she explained that the nurses focus just on analysing patterns in BGs etc day to day, and that makes them pretty strong at that, whilst the consultants see the bigger picture - they're important too they just have different roles.

I was asked my opinion a lot. Am I happy with my diabetes control. Any thing I want to change or improve?

I was talked to like a competent and knowledgeable adult. My opinions werent just asked for but they were listened to and responded to.

The attitude was that I am a key part of decisions and I should steer things. It was about letting me know what they can offer me, and leaving it to me to decide what I want. If I want to see a dietician I can, if I want to see the DSN very often or very little, then we can arrange that too. If I want to communicate via phone or email, then I can do that too. Wrote down the details for me.

I was offered carb counting courses for the first time, in groups or one to one. It wasn't a "you should do this" it was a "you should know we can do this, if it's something you decide you want to do at any point".

Insulin pumps were brought up by them not me. There are several hundred people on NHS funded insulin pumps at the clinic and they are not all T1. I was told not being [classic] T1 doesn't mean pumps aren't an option, though it is more rare. They also made sure my expectations were realistic and that I didn't take it to mean "of course you can definitely have a pump".

I was asked how I find Tresiba, how do I think it's working and how do I find it. I've told previous Drs that I dont think it gives me a benefit over levemir/lantus and been told, "Yes it does, its very good, stay with it". I told the nurse that I don't think it is worth the extra cost and instead of telling me I'm wrong, she asked why and I explained. Basically we had a normal adult conversation like normal adults do rather than one person treating the other like a child.

I was asked if I'd tried the tablet that makes you pee out sugar (can't remember the name). That was mentioned as an option I hadn't tried, and that I can try it with insulin. I wasn't told "you should try this", I was told "this is what it does and how it works and the benefits of it" so that I could think about it as an option that hadn't been mentioned before.

I was asked if there is a particular consultant I wanted to see or if I'm happy to see any. I was interested in seeing one that knows about pumps but of course they're all pretty pump knowledgable anyway.

One tweak was suggested to me to experiment with, which is to try a bolus as soon as I wake up, before getting out of bed even, to stop the DP (dawn phenomenon). I was nervous about trying it because of having insulin when walking the dog, but felt comfortable with trying it - starting small - after chatting it over.

They showed interest in my Libre sensor, had heard of it, and were interested in how I found it and how it improved my life. They looked at the weeks daily BG traces I had printed off and saw patterns and generally seemed interested in the data. It must be years since anyone has even looked at the BG printouts I take and offer them. I'd been told sensor is a waste of money and not to use it at my previous clinic.

My A1c is 68, at last hospital I had been told "well that's close to target of 8% so stop the apidra now". When I kept saying my personal target is under 6.5%, I was told to be realistic and that that isn't possible without loads of hypos. At the new hospital I was listened to when I said I wanted it lower to reduce risk of complications, as I have plans for a long healthy life. Only opinion given on my BGs was that whilst they could be lower they aren't terrible, but if I want to improve them then we can work together on that.

I was asked when/if I wanted to come back to see the DSN again. It could be as soon or far away as I liked really, it was up to me. I was a bit surprised by all this 'being asked what I wanted' to be honest and didn't know what to say, so she suggested a time period and I agreed to that.

I've said or thought previously that in an ideal world, my diabetes appointments would be like my one-to-ones with my boss. He asks me what I'm happy with and where I want to improve, if there are any courses I think would help me, or any support that I feel I need. He asks what targets I want to set and where I want to get to. He offers some feedback, guidance and suggestions, but it's a two way conversation, between two competent adults. My previous diabetes appointments have never been like this. My new one was like that.

I honestly left feeling quite stunned and shocked, and with the thought, "Have i just walked out of some parallel universe?". It was a wonderful example of how things should be, and did wonders for my confidence in ability to communicate my own thoughts and feelings at appointments, something I've previously struggled with a lot.

Thank you so much for sharing this Lucy. Sounds pretty much perfect.

Backwards, forwards and off at a tangent

Looking back
Well that's it 2015 - you've pretty much had your lot.

So this is the seemingly inevitable 'round up' type post and also a chance to *finally* get around to writing a post that I had wanted to publish in the weeks before Christmas concerning the latest tomfoolery that my diabetes has decided to subject me to.

In January this year I had my first glimpse of the MiniMed 640G at a Medtronic bloggers and advocates meeting. There was quite a lot more of this particular gizmo later in the year.

February saw me clocking up 25 years of living with type 1 diabetes. More by luck than judgement I still seem to have most body parts in relative working order and nothing to speak of has apparently shrivelled up and dropped off so far.

In March, was honoured to be invited to join a small group of bloggers and advocates at the Diabetes UK Professional Conference in London, spreading news of new research and information via Twitter and Facebook as the conference progressed.

One of the most dramatic changes I have made in my diabetes therapy in years occurred in April when Fruit Pastilles and I abruptly parted company.

Over the summer I had the opportunity of living with the MiniMed 640G with full-time sensor coverage for 9 or 10 weeks and posted my very first video blogs documenting my experience. It was the first time I trialled sensor-augmented pump therapy and the results - for me - were quite simply remarkable.

August saw the publication of new NICE guidelines for Type 1 Diabetes in Adults after years of work. It is something I am very proud to have been involved in as a member of the Guideline Development Group. It would be wonderful to think that the document might make a positive difference in some small way to at least one person living with type 1 in the UK.

In November, I chose to upgrade to the MM640G when my pump warranty ran out, though that decision is tinged with sadness as (not unexpectedly) my clinic were less than optimistic about my chances of securing NHS funding for sensor coverage any time soon.

December saw an invite to speak at the Royal College of Physicians in Edinburgh at their St Andrew's Day Symposium. An amazing experience and I was humbled to be invited. Even more encouraging were the invites that I have subsequently received to speak elsewhere. Looks like 2016 could be really exciting. I'll let you know if and when any of them happen.

Looking forward
It will be interesting to see what else the New Year has in store. I would dearly love to be invited to DPC16, but will have to see whether Diabetes UK would like me to be there. I feel very lucky to continue to be part bloggers and advocates groups for both Medtronic and Abbott and look forward to seeing what snazzy new gadgets they have in store over the next 12 months.

I find myself wondering whether I will be able to self-fund sensors for my new pump for a small part of the year (something I never quite managed on the Veo). I have been using Libre sensors intermittently through 2015 and they have been incredibly helpful - but my experience of living with SmartGuard was really something else. It seemed to be the missing part of the puzzle for me. If the transmitter cost was lower, or transmitter life-expectancy was higher it would be a no-brainer. We shall see.

Expect the unexpected
It seems like my diabetes has decided to go off at a bit of a tangent recently. It will be interesting to see if my new 'surprises' continue to occur during 2016.

About two or three months ago I started noticing something rather odd. Since 2010 I have spent quite a lot of time trying to get to know my diabetes rather better. I had always thought we were reasonably well acquainted, but looking back there were many things that I simply did not realise were happening, or put down to 'diabetes randomness'. To be fair, there are still quite a few of these, but a lot less than there once were. When my basal is set right generlly my corrections and doses can be expected to behave (with an odd wobble here or there) when faced with a number of tried and tested meal scenarios. So when everything seems to be pottering along OK one day and then goes haywire with identical breakfast and lunch choices the following day my brows knit and I begin to wonder what's up.

And I have noticed some rather odd coincidences. Well... odd in some ways, but actually quite expected from others' point of view.

All the while over the years I have been relearning my diabetes and asking questions of others, I discovered a variety of 'things' which seemed pretty common experiences for people living with type 1 diabetes that simply did not seem to happen for me, even when I looked carefully for them. Things like exercise or alcohol having an blood-glucose-lowering effect the day after the event. There are a bunch of other things too. These were things I saw being discussed on forums and social media and was always able to say, "Oh that's interesting... I don't get that at all". Except now I do. At least some times.

The exercise and alcohol ones particularly stand out to me, because they involve every T1D's second-favourite game - the ole "What shall I do now?" bedtime conundrum. Which is double the fun if you seem to have spotted a pattern. But one that only applies some of the time - Ah Diabetes! You sly old minx.

So last night, for example, I went to bed at 8.6mmol/L with 1.3u of insulin on board which *should* have been dealing with carbs I had eaten mid-late-evening. Unsure if I had the count right I had another 5 grams or so to err on the side of caution. Except that we had been out at a family event earlier in the day and I'd had rather more booze than I would normally. Not silly amounts, but *possibly* worth factoring in when living in these new 'will it..? won't it..?' times. So I also set an 80% TBR to run for 8 hours. I was fortunate to be wearing a Libre sensor for the last of its fourteen days, so I had a chance for a quick peek at 2.45am whereupon I discovered than unlike earlier over the festive break I had *not* dipped at all post-alcohol - but had risen pretty steadily into the 10s. I added another 0.8u and cancelled the TBR waking at 7.5mmol/L.

So why had I taken precautions that pushed me into double figures? Why choose 80% for the TBR? Because over the last quarter of the year I have had multiple occasions when that has been exactly the right thing to do, not only overnight, but also through to lunchtime the next day. In fact this was the situation fairly reliably when I first decided to write this post (early Autumn). It's only in more recent weeks that the edges have begun to blur again, and I am now left with uncertainty rather than An Actual Plan.

And I've had occasions over recent months where post-exercise dips a day after the event have needed exactly the same careful handling. And others, more recently, where seemingly similar exertions have needed nothing of the sort.

Not helpful.

It seems as with many things in life, the best approach to living with with type 1 diabetes can be found within the hallowed pages of Douglas Adams' trilogy in five parts:

The nearest approach the Guide makes to this matter is on page seven-thousand-and-twenty-three, which includes the words "expect the unexpected”. This advice has annoyed many Hitch-Hikers in that it is ‘A’ - glib, and ‘B’ - a contradiction in terms. In fact, the very best advice it has to offer in these situations is to be found on the cover. Where it says, in those now notoriously large and famously friendly letters, “Don’t Panic”.

The Hitch-hiker's Guide to the Galaxy (part 10), Douglas Adams

No.

Just back from my annual pump clinic. If anyone from my clinic reads this, I'm very sorry. I know I was awful. I had been building up to this for days. Weeks possibly. I already pretty much knew where it was inevitably going to go. I was ready to feel angry and disappointed before we started. You didn't deserve that.

It didn't help that we started with the 'Statins' conversation I've been expecting for several years but have, so far, been spared. It seems I've tipped over the edge of the 'how old' question even for your fairly relaxed attitude. I'm sorry that I find the whole statins/cholesterol thing such a tangled mess of claim and counter claim. I'm sorry that the research into their effectiveness (or otherwise) generally - and also in relation to type 1 is so clouded, murky and beshadowed by claims of vested interest and bias. I'm sorry that I ever read any of that stuff and couldn't just say, "Yes OK". To be honest I'm still not sure that the whole lipid/heart hypothesis isn't fundementally wrong anyway and that I have begun to suspect that the relative benefits shown in Statin studies over all those years may simply be "accurate measures for the prevailing bias". I'm sorry there is no way to accurately work out whether they would be worthwhile for me as an individual. I'm sorry I didn't, couldn't just take your word for it.

Thank you for agreeing to differ with me. And YES. I genuinely did mean that I would continue to think about this as I grow older.

I'm sorry I don't know what you mean by 'a hypo'. What number or frame of reference you wanted me to use. I'm sorry that by now (while you were still impeccably professional and cheery) you were probably wishing I would just shut up and go away.

I'm glad that you were pleased with the reductions I had seen in hypoglycaemia, particularly overnight with the combination of MM640G and CGM.

I'm sorry that it's not an option that is available to me.

I'm sorry that the CCG has approved no CGM applications on compassionate grounds in the last 2 years.

I feel sure that you would like to help more people with technology like this. I'm sorry that you are not able to.

Next year I will try to just come in, fill in my boxes on the forms, answer your questions, and then go away again.

Release your inner diabetes Hobbit - Guest post for Diabetes UK

My diabetes, yesterday.

Last weekend we finally got around to watching the last part of Peter Jackson's mammoth 'Hobbit' trilogy "The Hobbit: Battle, battle and a bit more battle" on one of those newfangled instant video services (pauses to wistfully remember trawling the aisles of tiny, ramshackle video rental shops all those decades ago). During one of the epic-wide-shot-sweeps across the thundering conflict there emerge, through dust and fracturing hillsides, several enormous, lumbering cave trolls - staggering about, squashing people and generally getting in the way.

They reminded me more than a little of my diabetes.

Except that my diabetes doesn't often wear a little wooden backpack-style platform of Orcs throwing rocks. Although some days...

I think it was the thick-headed stagger of them that made me draw the comparison. The turgid movement. The stupidity and utter disregard for anyone or anything around them. Yup, my diabetes can be all of those things. Slow, stubborn and very hard to work around.

The heroes of the film, by contrast, are tiny, fleet of foot and scamper around very nimbly. Dancing and chasing in and out, between legs and around corners, while the grunting Diabetes Troll laboriously lifts its impossibly-heavy hammer for another ill-aimed swipe.

But there is obvious peril here. Running rings around the hapless troll is all very well, but unless you keep your wits about you, and ideally keep your distance from the 'complications' hammer sooner or later you run the risk of getting squashed.

Mercifully, diabetes complications are pretty slow moving for the most part. And an occasional out-of-range reading here or there does not necessarily mean that our kidneys pack up immediately or our eyes are instantly fried [Good job too looking at my BG results this week!]. But there is a danger in that. It is all too easy to become a little complacent. Doing something now that (you hope) will reduce the chances of *something* not happening 5, 10 or 20 years from now is not a brilliant action-reward feedback loop. What someone once described as, "We work hard so that nothing happens... We hope that all of that "something" we do leads to nothing - Nothing is a pretty lousy reward".

All that effort and nothing to show for it. Are we doing enough? Do we need to do more? And we can't rely on our feelings to measure these things. There are no pain-measuring nerve endings in many of the places that our Diabetes Troll might be taking a swing at. And the swing itself might be so slow as to be almost unnoticeable until it's right there upon you.

And that is why the 15 Healthcare Essentials recommended by Diabetes UK are SO important. The first 9 or 10 represent really important annual checks which allow you to keep an eye on your Diabetes Troll. And if you discover that you are straying a little too close for comfort, having these checks done every year allows you to take action early to reduce your risk of getting squished. Between 10 and 15 there are really important parts of your care package which will allow you to improve your hammer-dodging skills, brush up on your swordplay and make sure your mind, as well as your body are ready for the fight.

15 Healthcare Essentials Checklist

1. Get your HbA1c measured at least once a year
2. Have your blood pressure measured and recorded at least once a year
3. Have your blood fats (such as cholesterol) measured every year
4. Have your eyes screened for signs of retinopathy every year
5. Have your feet checked every year
6. Have your kidney function monitored annually, including having your urine tested for protein
7. Have your weight checked
8. Get support if you are a smoker
9. Receive care planning to meet your individual needs
10. Attend an education course to help you understand and manage your diabetes
11. Receive care from a specialist paediatric team if you are a child or young person
12. Receive high quality care if admitted to hospital
13. Get information and specialist care if you are planning to have a baby
14. See specialist diabetes healthcare professionals to help you manage your diabetes
15. Get emotional and psychological support

Around 80% of the budget spent on treating diabetes in the UK goes on sorting out complications. Just think about that for a moment. 80p out of every pound. All the cost of medications, test strips and fancy diabetes gadgetry are utterly Hobbit-like when set against the monstrous scale of the cost of helping those for whom things have not worked out so well.

The vast majority (around 90%) of people living with either type 1 or type 2 diabetes have never been offered or have never attended a structured education course which could give them the skills to live better with diabetes every day.

Way less than half of the people living with Type 1 in the UK are getting the checks that they should every year. The actual figure, according to the National Diabetes Audit is just over 40%.

People are not finding out early enough that their eyes, kidneys or nerves are starting to show a little wear and tear. It is never too late to make improvements to your own diabetes management, or get the right treatment and support. Many, many people have used information from their 15 Essential Healthcare Checks to dodge the hammer-blow and nimbly dart out of reach of the troll's swing. Early warnings are just that. Improve your diabetes management and in many cases those early signs can be stopped in their tracks - sometimes they can disappear altogether.

If you live with diabetes, or know someone who does - make sure you read that list and make those appointments. Being told, 'It's all looking fine' does not make these visits a complete waste of time. It's an important annual opportunity to make sure you are staying one step ahead of the trolls.

See also: 15 checks, diabetes audits and prawns

Annual reviews and first appointments - A guide for junior Doctors,trainee DSNs and other HCPs

To state the ridiculously obvious - Type 1 diabetes is not always very easy to live with.

The relentless requirement to monitor, juggle and account for a hundred-and-one variables (food, doses, exercise, weather, stress, hormones... you know the drill) while trying to live a relatively normal life day to day can be quite a frustrating business.

It is a great comfort to know then, that we have a number of ferociously clever and wonderfully kindly professionals that we can regularly visit who are dedicated to supporting us in our daily battles with the big D. Most of us will only get a precious few hours a year to receive this input, so it's important that we can make it count.

A month or so ago someone who I consider to be quite a good friend (which is odd really since our contact has only ever been of the remote and electronic variety) shared an experience of an appointment with a young and perky Registrar which, from what I can gather didn't work out too well. I think it's fair to say that my friend has now - some weeks later - just about managed to come down from apoplectic-teeth-grinding rage into the significantly calmer strangers-crossing-the-street-to-avoid-thunderously-angry-expression.

This got me thinking about what it is that we long-term pancreas-impersonators (or newly diagnosed for that matter) might hope for out of our precious appointments. If you've not done many D clinics before (or even if you've been running them for years!), here's what I would hope you would bring to the party:

Hello
First impressions count. I've met a lot of HCPs for first-time appointments and you would be surprised how many don't introduce themselves. It's a busy clinic, I realise I may never see you again, but it would be nice to know who you are.

Please, please, please just take a moment before I come in to skim read my file. If you are checking that information is up to date then be a bit careful of how you ask those questions. "So... you have type 1 diabetes?" might seem innocent enough, but some people you will be seeing might have been living with their condition for longer than you've been alive - so it's not really a question that needs to be asked. T1D isn't really something that's going to go away. Know my type. Know how long ago I was diagnosed. Know what direction (if any) my HbA1cs have been moving recently and what insulin(s) I am using. If you are checking records for accuracy and up-to-dateness, tell me that you are checking. Otherwise I'll think you are an idiot.

It isn't your fault
This is slightly unfair, but I'm afraid there's nothing to be done about that. You have no way of knowing what sort of horrendous appointments I have endured in the past (I haven't actually, but many have). The last thing we both want is for the steel shutters to come down behind my eyes and for me to descend into 'smile-and-nod' grunting, just waiting to leave - that will do neither of us any good. Here are a few of the states-of-mind in which I have arrived at appointments over the years:

• I have identified a problem or issue and I have no idea what to do about it. I'm hoping for suggestions.
• I have identified a problem or issue and I am working on it. Your suggestions might be something I've already tried and found not to work.
• I have identified a problem or issue and I think there's a gadget/change of insulin that might help.
• I know things have been going OK recently and just want my results, thanks.
• I know my results are a mess and hope I'm not going to get some kind of telling off. Don't you understand how impossibly difficult this is to do day to day?
• I'm past caring, nothing I am doing seems to make any difference and previous clinic suggestions have just made it worse - I would ask about psychological support, but what's the point?
• I don't have time for this and want it to be over as soon as possible.

You will need to develop a forensic, interview technique to glean from my merest eyebrow twitch which of those states-of-mind I am in. Alternatively - you could just come right out and ask me at the start - there's a thought. Ask open questions, be interested in the answers. Diabetes is not always textbook, you may know a lot about diabetes that I don't, but I'm the one muddling along with my diabetes 24 hours a day. As we say in the DOC - Your Diabetes May Vary. Most often I'm not expecting you (or even wanting you) to give me definitive answers, but rather to suggest strategies, principles or techniques that I can try out. And be asked about what sort of level of support and follow-up I want.

Not a number
I am not my numbers. I am not my A1c, my high this day, my low that day. These are information, but they don't define me and certainly don't necessarily represent the amount of effort I am putting in. Ask me what I'm aiming for, and why. If you think my A1c is too high or (too low) don't say anything until you've found out what I think about it. Ideally you've already picked up some story-so-far clues from my file (see 'Hello'). There is always ALWAYS something to improve. I want us to work together to make my numbers just a little bit better by the time my next appointment comes around, but I don't need telling off. Ever.

Questions, questions
Questions are your friend - I know you know this already, but it is worth restating nonetheless. Ask me what I am looking for. Find out what I am already doing (or considering starting) to try to reach my goals. That way you'll be in a better position to give me some really helpful pointers. You'll realise, of course that I may have come in with my guard up. You might have to tease the truth out of me, but asking the right questions will make us feel like more of a team - that you are on my side. Be especially careful if I have brought in any information, charts, print-outs and so on - you would be astonished how often these carefully prepared sheets are simply brushed aside. Pay them attention - ask me if there's anything I've spotted that needs looking into. If you spot what you think is a pattern, ask me whether I think it is significant and if not, why not. Sometimes type 1 diabetes is just random and frustrating, but a fresh pair of eyes and a healthy discussion about tactics and options can be just the thing to open up a new line of experimentation. Think of yourself as a top-flight Premiership football coach. Talk to me about strategy, technique and tactics rather than how far to kick the ball.

Never assume I know something
You may be up to speed with all the latest diabetes management techniques and fully immersed in decades of diabetes research. As a long-in-the-tooth patient, you would be forgiven for believing that with all my years of experience I am bound to have come across all this knowledge already. Carb counting... basal testing... dawn phenomenon... difficult foods... correction and insulin:carbohydrate ratios... I may know about these, but ask a carefully phrased question to assess my current approach to challenging day-to-day management situations in order to fill in any blanks I may have in technique and understanding. Once again the questions are crucial - otherwise we are into dangerous chicken-ovulation-inhalation territory.

Never assume I know nothing
Obvious really. But few things will sour our fledgling relationship quicker than you assuming that I have no idea what I'm doing. You never know... I might be one of those people who has read many of the academic research papers that are freely available online these days. I might have spent time keeping up with developments in technology, treatment and even the minutiae of NHS funding options because this stuff really matters to me. I may even have some interesting opinions - it won't hurt to ask.

Never assume. Anything.
That's your 2 second 'lift test' right there. If this is the only bit of this post that you remember, then we'll get along fine.

What about anyone else? Any hints and tips for HCPs for the perfect first appointment? As ever, comments welcome below.

#teamsmug

One of my favourite diabetes-related hashtags of late has been the coining of #teamsmug (I'm not sure who came up with it, but I suspect it was either Dave or Paul). Part self-congratulation, part self-mockery, membership of #teamsmug can follow as little as a single unexpected good BG result after a tricky meal - even just waking up at a good level is enough. The shiny (and entirely imagined) #teamsmug baton is being passed around between Twitter users who know that a few good levels should be enjoyed, but can't necessarily be expected to last. Oddly enough, pretty much as soon as I had blood taken for my HbA1c I had an unusually prolonged #teamsmug period. Almost as if Artoo was responding to my previous grumpy post with, "Doubting my effectiveness are you... Well we'll see about that!"

It has been a hectic few weeks, and I really meant to post something about my HbA1c results before now. I was delighted (and slightly confused) to get a result of 46mmol/mol (6.4%), pretty much back to the last A1c I had pre pump, but with all the hypo reductions and general quality-of-life improvements that the pump has brought. It was a bit of a surprise to be honest. I'm not quite sure how I got that sort of result, as it certainly doesn't seem to fit with the weekly averages I'd been having in the weeks running up to my appointment. It just goes to underline the imperfect nature of HbA1c as a marker.

You'll be reassured to hear that my #teamsmug membership has been revoked since. Nice while it lasted, but the goalposts have moved again, and I'm still chasing after them with a few basal tests.

A1c apprehension and feeling a little deflated

I have an appointment on Monday to have bloods taken for my annual review a week or so later. As is often the case the mere hint of an A1c on the horizon has been enough to play havoc with my blood glucose levels over the past few weeks. Coming down with a cold hasn't helped either.

This time last year I was at a bit of a turning point. I had tried as hard as I could to improve my levels on MDI, and still felt there was improvement to be made. That review was undertaken at the hospital, and having discussed the ongoing challenges I was trying to tackle, the Registrar agreed that an insulin pump was a good option. I recognise that I am extremely fortunate to attend such a pro-pump clinic and after a few more appointments and a bit more prep, I was pumping before Christmas.

Regular readers (your gritty determination astounds me) will know that my journey towards an insulin pump was not entirely straightforward. I spent a great many years resisting the idea each time it was mentioned. Approaching a year into my pump experience I have just done a d-geek 'compare and contrast' exercise that convinces me more than ever of my position on the OCD spectrum - partly because it annoys me so much to have a key period of MDI results missing due to an *ahem* administrative error (I deleted them from one place before checking the place where I thought I'd copied them). I put together seven months worth of BG results side by side, matching 'tricky' periods like Christmas and holidays. I then examined them for a range of markers - BG average, SD, FBG in range, numbers of highs, numbers of lows and so on.

Without going into the minutiae (I appreciate I have to at least make a gesture towards allowing you to retain your will to live) the truth is I'm a bit deflated by the results. Since moving to the pump they are, in some ways, better than on MDI - but not really by very much. And if I'm honest I was hoping for the same transformations to my results that I'd seen in other people. People whose MDI skills I hugely respect, whose lives are busy and full of nice varied (and occasionally eyebrow raising) meal choices. People whose A1c's fell by a significant margin after a short time on insulin pump.

The trouble is I should be perfectly happy. My meter averages suggest that my A1c will be somewhere in the high 6's. To be disappointed by that seems ridiculous, but my last MDI result was 6.3. It is true that I'm having slightly fewer 'waffy' moments these days (thanks Dave!) but I've also had more readings in the 20s than I can remember thanks to multiple set failures which at one stage seemed to be happening fortnightly.

I still believe the pump is working for me - and having changed to Silhouettes a few weeks back I've not had a failure since - but by now I was hoping to have this whole thing sorted and be cruising along with more stability and less goalpost chasing.

I'll let you know what the result is when the A1c jury comes back in.


UPDATE: #teamsmug

How's it hanging?

A few weeks back I had my first ever 'Pump Clinic'. I've been in for a few individual appointments, but this was the first (presumably annual) review of how things were going. I had a 'spare' HbA1c that I'd been given at my last 'Annual Review' and decided that this was a pretty good time to play my A1c joker.

I was fairly pleased to get a result of 49 (6.6%), though my meter averages suggested it might have been a little lower than that. I am beginning to think that the Contour Link's habit of reading slightly lower than my old Expert means that the conversion I used to use to estimate an HbA1c from meter averages is now a little off.

I also had a full lipid panel done (my GP review in March had mistakenly only ordered a total chol figure which is not much use in my book). I was happy to see that my total figure had fallen slightly to 4.7 and the splits remain reassuringly promising (for cholesterol nerds: Total chol 4.7, 1.9HDL/2.5LDL, Trigs 0.6). Fingers crossed my old ticker has a few more years in it yet.

I'm not sure if the folks at the pump clinic had just had a particularly challenging morning, but it was lovely to have my Pump DSN and the Consultant who heads the clinic saying such nice things. It may have helped that the basal tests I'd been asked to do in the weeks running up to the appointment (and had been in the process of doing anyway) had fairly spectacularly improved my levels. Artoo and I have been plodding along for 8 or 9 months now, and we seem to have hit a bit of a purple patch. The weeks running up to my appointment were pretty good, and while I've needed to do a little more tweaking since (darned basal goalpoasts on the move again) I've had another few weeks of really good results.

I think I'm beginning to see what all the pump fuss is about.

During the appointment there were slightly raised eyebrows when my sites were being checked, because of the way I was wearing Artoo. In the first few weeks of having a pump I got increasingly annoyed that the clip on the back only allows the pump to hang vertically on a belt. This meant that Artoo was sitting really high and frequently made his presence felt by digging me in the ribs. He went so far as to draw blood on one occasion when I was getting in and out of a car.

Almost all of the 'how do you wear your pump' comments I see on blogs and forums seem to be from women who smugly say how marvellous it is to be able to hang it from their bra. All very well for you lot with your copious cleavages and fancy undergarments, but not much use for me. For blokes it seems to be belts or pockets only. Like some sort of inviolable test of pumping man-dom. Since I have no room for anything else in my pockets I looked around for alternative clips. Medtronic do one described as a 'holster' (which appealed to my 8-year-old-Magnificent-Seven-loving self). I duly filled the irritating VAT/account creation paperwork, paid the exorbitant price and waited. Within an hour of eagerly sliding Artoo into it for the first time I knew that it was going to be hopeless. While yes, strictly speaking it does allow the pump to hang horizontally, it only does so with a sort of plastic 'back board' with the clip on which hangs vertically and is exactly the same size as the pump. Not only that, but the twisty mechanism is fairly loose so it's very easy to knock your pump into a wonky angle. Short period of tutting and grumbling. Original clip back on.

My solution (and the reason for the raised eyebrow) is pictured on the right of the lamentable 'holster'. It was a £1 scrunchie from Asda (other reasonably priced hair accessory retailers are available). Essentially a long loop of elastic with a cotton cover. Looped three or four times around my belt I can get Artoo to hang perfectly level by passing the clip through the loops. Because it's elasticated I can easily slide him left or right between belt loops, either more on the hip or more toward the front, to suit a seatbelt or whatever. Additionally the little bit of 'give' in the elastic means that I can tilt the screen toward me and read the display right-way-up without any 'having to get out of bag' complexities. Result!

I don't know if it is only me who had this struggle finding a the perfect method of positioning their robot counterpart, but if you are still struggling (and getting bruises around the waistline) I'd recommend a £1 scrunchie every time.

Where do you put yours?

Look sir, droids!

Not very long ago (yesterday in fact) in a clinic not very far away... the adventure began.

Perhaps it is because I was eight years old in 1977? Perhaps it's because Dave and I have both been wrestling with the idea of turning to the 'dark side' for quite a while now?

For twenty odd years I have been using daily injections as a replacement to my pancreas. As recently as a year ago I was absolutely certain that despite the hype, an insulin pump was not for me. Pumping had been first suggested to me in perhaps 2002 or 2003 and I really couldn't see the appeal. All the carb guesswork, differing levels of activity and million-other variables would still be there messing things up, after all. The consultant who suggested it could not explain to me why it seemed to work better, just that it did. Over the last two years I have worked, noted, tweaked, experimented and focussed on improving my control as never before. But as good as things ever got on MDI it was still not good enough. In the weeks running up to my Annual Review the choices seemed pretty clear. A small change (to a different background insulin) on MDI, or a big change to pump therapy to see if it would work as well for me as it seems to for everyone else. Whatever I did with MDI, the hypo-squashing, control-improving, BG stability promise of the pump would still be there. It was time to try Replacement To Pancreas #2 (r2-p2).

So I'm typing this with a little robot counterpart attached to me. 'Artoo' and I have a long way to go.

First impressions are pretty good. Though to be honest since I have nothing to compare it with, how can I know? The first cannula I inserted (with the help of the lovely LJ, the DSN in charge of pumps at the hospital I go to) went in fairly painlessly with Medtronics spring-loaded Quick-Set gizmo. I was told that they often itched a bit for the first hour, but that it should settle. Four hours later it was itching like crazy, especially when I fake-bolused some saline through it. I'm not sure I had expected to constantly feel the presence of a set. And of course it may just be that, given that these are the first few hours, I am just hyper-aware of everything and that it is just all in my mind. Nevertheless, having read the first chapters of John Walsh's brilliant Pumping Insulin, and given that my week on saline is in part about experimentation, I decided to replace it in case something had gone wrong with the initial insertion.

The second try went pretty much the same as the first. Stung a little to start with - like an MDI injection where you nick a capillary except that it goes on feeling like that rather than going away in ten minutes or so. I've stuck with this one to see how things progress. I know different sets suit different people, it may just be that 9mm Quick-Sets are too long and 6mm would be better - or that I don't get on with the adhesive... or something else entirely.

I think that's the thing that is striking me most. This is a Paradigm-shift (ho ho!). It's absolutely like being diagnosed again. I have no experience to tell me whether this or that 'feels' right or wrong. Whether this sensation is fine, or a signal that something needs to be looked at.

It makes me very glad I have a week on saline to just get my head around the mechanics of it.

I've at least two more set-changes to go before I go back to the hospital to get started on insulin. I'm going to experiment with a shorter Quick-Set and a Sihouette to see how I get on with those.

If you are a veteran pumper with pearls of wisdom, or a wrestling with your own decision about pumping it would be great to have your comments.

UPDATE: WDD 2011 and some pumping firsts

Reviewing my review

So today was the day. My long awaited (and only slightly delayed) annual review. As far as I can tell most, possibly all of the old clinicians have left the hospital I attend, so there were new faces to meet. 

It was great. My appointment started promptly and my discussions with Dr S were unhurried and thorough. A little too thorough, perhaps. Apologies if you were after me, I think I stayed and chatted for a bit longer than I usually would. 'Smile and nod' this wasn't. It felt more like a fruitful exchange of information. And if Dr S was bored senseless and wished I would get lost, she certainly gave nothing away. 

I was pleased to learn that my HbA1c had dropped from 7.1% to 6.3% (45mmol/mol in new money). Dr S pointed out that that was the sort of level at which they get begin to get concerned about the number of hypos that might be involved, but thankfully I'd taken a sheaf of printouts showing that I'm having far fewer these days. Other results showed an unexpected drop in cholesterol to 4.7 (with an improvement in the lipid panel split of 2.1 HDL, 2.3 LDL and 0.7 Trigs - yes I realise that doesn't add up, calculated values sometimes don't it seems). Blood pressure, while occasionally higher than ideal, is generally low enough at either end of the day to pass muster. 

I should take this opportunity to thank the Diabetes Online Community for their amazing support and encouragement over the last year or two. Forums, blog posts and comments left here have had a major impact on the way I am able to manage my diabetes. Things that I had thought impossibly illogical for years have been made much clearer. You guys rock!

And as for the *big question*? Well as I talked through pretty much all the issues I still have with Dr S, we agreed that all of them would be easier to handle on a pump. I have booked an appointment with a DSN to talk pumps, Levemir and other options. 

Watch this space. 

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance

'HbA1c phenomenon' and feeling grumpy

I have an annual review coming up in April. I know this because I called the hospital a while ago to check I was still on their list (I recently transferred back, having been seen at my GPs for a few years).

I also know it because my blood glucose levels have been running stupidly high recently. This seems to happen to me a lot. As soon as I know I'm in the 3 months running up to the test (HbA1c gives an indication of average BG levels over the last 3 months) it all goes to pot. I've come to think of this as 'HbA1c Phenomenon'.

I've been working hard at getting my diabetes under control for around a year now. When I look at monthly average figures during much of that time they are around 6.9 - 7.1 mmol/L. There's a ready reckoner which suggests your HbA1c if you give it an average BG level for 3 months or so, provided the tests include a decent spread of pre- and post-meal results (which mine now are). There are a fair few of these conversion formulae, but the one I use is:

HbA1c = (BG average+2.52)/1.583

Weekly averages recently have been in the mid 8's. I haven't been doing this badly for about 8 months. I was so hoping for a good A1c. Almost as an 'official' affirmation of the work I've been putting in. Secretly I think I was hoping I'd make it into the elusive 5% club (sub-40 in new mmol/mol numbers), but now I think I'll be lucky to match my last one of 7.1%. If I was still pottering along without paying much attention I'd be happy enough with that (as indeed I was), but when you are working much harder at something it's nice to see some sort of results, and a little frustrating to think that you would have seen those results a month or two ago when you didn't have the test scheduled!

In my heart I know that the HbA1c is a pretty poor indicator of control. I've cheated low numbers before by having enough hypos to cancel out all the highs. But it's the badge which defines you as far as the medical profession is concerned. However inaccurate it is, it's still considered the 'gold standard' indicator. I wanted not only to have better control (which I do) but to have a pleasingly low A1c to match.

So I am trying (and largely failing) not to get too grumpy about this. To breathe deeply, take one test at a time and be happy with how far I've come in the last 12 months.

You never know... the test is weighted to the most recent 4 weeks or so. I might still have a chance to knock a bit off if I can keep my head during March.