Posted by on Sunday 29 May 2016

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.


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.


    1. Hi Mike,

      So sorry to hear about this - I completely understand the rationale behind permissive hyperglycaemia. And yes, the 'dead in bed' syndrome is a real concern.

      But of course, we now know that it is possible to achieve near normal BGs without the fear of hypoglycaemia (particularly nocturnal). But you do need to use a CGM with an alarm, or the Medtronic pump with SmartGuard. I wouldn't feel safe trying to do it without continuous monitoring in the background. And it is so valuable overnight - my wife has been (rightly) insistent that I aways have the CGM on overnight.

      The annual cost of the Medtronic route does seem particularly high - have they reduced their prices at all?

      The Dexcom G5 system can now use a smartphone as the receiver and the costs have come down a fair bit: £200 for a transmitter (guaranteed for three months) and £50 per sensor. Most people on the forums seem to be using the sensors for two weeks. So about £40 a week overall. You can also get a dedicated receiver for £275. I don't have any vested interest in Dexcom, other than thinking that their products are amazing :)

      Diasend is also a great free tool for analysing the data and presenting it graphically on your phone. My 24 hour average BG is currently 6.3, SD 1.3 with no issues at all with hypos. It just makes managing Type 1 much more straightforward and worry free.

      Which brings me to funding: around 15 to 20% of US Type 1's would appear to be using either Medtronic or Dexcom CGMs, some fully, some partially funded, and some completely self paying.

      Perhaps we need to move to partial funding in the NHS. It's too much all or nothing at the moment, with the criteria for CGM funding being severely restricted (and only then to those with poor control). Crazy having jump through hoops to get it.

      Thank you so much for all the work you did with the NICE guidance - the HbA1c limit of 48 is excellent.

      With best wishes,


    2. Thanks Ian.

      It will be interesting to see what happens with CGM adoption in the UK over the next few years. I am still longing for better data to be published which will identify who can benefit the most. That, along with reduced costs - which may come if any of the emerging new technologies play out - could make it more accessible to more people in the years ahead. Here's hoping any way.

      Part of the problem is that the field is moving fast and organisations like NICE really struggle to keep up. By the time we had published the T1 adults guideline the Libre was out but not mentioned. The NICE undertook a diagnostics appraisal for sensor augmented pump therapy, but because of the scoping/drawing a line on literatire searches were only able to look at older data for the Medtronic Veo and Animas Vibe and had to ignore the MM640G altogether.

      If the ready-reckoner figure of only '10% of people who start using CGM want to continue' is anything like accurate, then it does seem to me that we are talking about a small subset of a relatively niche condition who would be interested in this tech anyway!

      I am still considering using sensors with my MM640G and would be doing so already if it were not for the £500 transmitter cost. I reckon I could get 12 days out of most of them, in which case it would make the sensors not dissimilar in cost to Libre - which I already run every month or two.

      And then of course there is all the effort Abbott are putting into getting Libre sensors as re-imbursible. I wonder if I could make a reasonable case to my GP for sensors as a replacement to some of my strip use?

    3. Hi Mike,

      It might be worth approaching your CCG about the sensors - your GP won't have the authority on their own to do this - the Libre sensors aren't on the prescribing system yet. It would carry considerably more weight with your Consultant Diabetologists supporting you.

      Do have a look at the link above on Dexcom's approach in Europe - particularly their success in Sweden, the Netherlands and Switzerland on reimbursement.

      For me, technology is a tool - it has to be reliable, intuitive and almost transparent in use - I'm a great advocate of the KISS acronym :)

      And the current batch of CGMs are getting there, particularly with all the wireless syncing to smartphones and the cloud. It just works.

      I think adoption of this technology particularly among the younger Type 1 crowd will be huge when the price comes down and / or it's made available on the NHS.

      With best wishes,


    4. I have already had several coversations with my clinic about sensors. I was told that my CCG has not granted new funding (on exceptional circumstances or otherwise) for CGM in adults in the last 2 years - including cases with multiple hospital admissions per year. I was also told that they have not decided yet what they are going to do about the new NICE guidance whch indicates CGM in just such circumstances.

      I will keep on asking the question, but my clinic are less than hopeful that funding will be agreed.

    5. How exasperating Mike.

      I'd keep on at them in a polite but persistent manner, while pointing out your involvement in developing the current NICE T1DM guidelines.

      Perhaps try and get some details on the cases where your CCG have declined funding for patients who fulfil the restricted NICE criteria as it stands - if there's an interested consultant in your diabetic department, get them involved. The CCG would have to respond to a freedom of information request to give anonymised data - but it might get the funding committee's back up a lot! Best to have them on your side.

      Do get your diabetic team behind you, and go and see your MP about it if needs be.

      As a straightforward business case it makes ample sense - just averting one acute admission would probably pay for the sensors for a year, let alone the enormous cost of treating complications down the line.

      I'm sure many more supporting research papers are in the pipeline, but a sizeable study takes years to conduct. And as you say the technology continues to evolve rapidly.

      I'm sure the clinicians and patients who promoted the first insulin pumps ran into similar issues.

      Very best wishes,