As well as logging my data in Nightscout and trying to be more mindful of everything I did with my diabetes, I thought it would be worth a visit or three to a diabetes educator.
But it had to be the right one…
I had seen an absolutely lovely woman at my diabetes clinic over a decade ago. I was the first person to go on a pump there in 2000 and she helped me upgrade that first pump in 2004. She was in private practice now and I decided to track her down again.
CGM was the key
I always needed more help with my diabetes than I was able to get in the traditional model of care, seeing an endocrinologist every four months. I loved my endocrinologist and had been seeing him for 18 years. He had supported me through two pregnancies, was always available to answer my questions via email and was an advocate for people with diabetes being more knowledgeable about their own diabetes than their care providers. He encouraged me to read research articles, understood my fear of hypos and tried to tread gently with his suggestions. But still, even with a fantastic endocrinologist in a publicly-funded and accessible health system, I struggled to achieve healthy blood sugar levels.
It was like a dance. I’d go and see him every four months and he’d download my pump and BG meter data, look for patterns and advise me to increase my basal and bolus rates by just the smallest amount. I’d do that and leave the clinic, often start having hypos, and then switch the rates back to what I’d used previously.
What I now realise is that two things were actually changing after those endocrinology appointments, my settings which had been adjusted, and my behaviour. For the few days after the clinic appointment I would force myself to use the bolus wizard (which I did not usually trust), I would try to be more accurate with my carb counting and would try to bolus for meals earlier. So it was the double whammy of adjusted settings and behaviour change that often led to the hypos. Also, because I was not using the pump’s Bolus Wizard during the four months between appointments, my endocrinologist did not have accurate information on what I was doing in terms of meal bolusing and carbohydrates.
My data always looked like a complete scramble to me and I found it extremely difficult to see patterns in it. I had a lot of variability from day to day.
And then came CGM.
The diabetes educator made an interesting comment to me on that first visit. She had downloaded my pump data (which included BG readings from my linked meter) and she also downloaded my CGM data from a separate system.
She said the advice she gave me based on the CGM data was very different to the advice she would have given me if she’d only had the pump/BG meter data. So there it was. At least part of the explanation for why my years of visiting my diabetes clinic had been less than optimal in terms of sorting out my BGs. No CGM data.
I was also incredibly sensitive to insulin and it was the hypo avoiding or minimising capabilities of the hybrid closed loop system I was about to try that would make the real difference.
Fix the basic stuff first
I had picked up some habits over the years in relation to my T1D management that weren’t working for me and I didn’t even realise it.
The first one was not realising that many of my pump sites were dodgy.
I’d been using the Medtronic Quicksets since I started pumping and inserting using a Quick-serter. My Quick-serter was ancient! These work brilliantly for most people but I didn’t have a lot of fat and kinked cannulas were a regular occurrence.
First I bought a new Medtronic inserter which seemed more gentle. But then I followed the diabetes educator’s advice and tried other types of sets. I tried everything on offer from Medtronic.
I found the best sets for me were the 6mm Mios. I still get dodgy sites from time to time where there is some problem with absorption. But I’ve only had one bent cannula in six months.
David Burren has a great dual cannula hack for not getting stuck with bent cannulas. It basically involves leaving your old site in place for a few hours after inserting and connecting to the new one. By then you will know if your BGs are skyrocketing due to a bent cannula or dodgy site and it means you can reconnect to the old site to get the insulin flowing immediately and sort out a set change when it’s next convenient.
Rotate your sites
I guess this is a no brainer but I wasn’t doing it. I’d gotten into the habit of using my buttocks area during my first pregnancy 14 years ago and had stuck with it. It led to less bent cannulas than the abdomen. The diabetes educator implored me to start using my abdomen to give the other area a break. It made a big difference to BG control.
I think in hindsight I probably had a lot of variable insulin absorption due to overuse of the same sites. It’s probably one of the major issues for those of us who’ve been pumping with T1D for a long time. Preserve that site real estate at all costs!
The bottom line is, now that I’m looping with OpenAPS I detect insulin absorption problems much faster than I did pre-looping. But having accurate CGM readings and good functional pump sites is crucial to the system working optimally. I found it was a great time to sort out this stuff while I was waiting for my looping gear to arrive.
Next … Starting to loop