There are many ways to measure how well diabetes is managed. We’ve learned very quickly to compile a shortlist when looking at our daughter’s data. As Diabetes is such a great balancing act, we look at how well we’ve avoided both hypoglycemia and hyperglycemia, but most importantly, we take a close look at her quality of life. So, three things:
After keeping her alive, quality of life is our main priority. Diabetes shouldn’t be a dead weight, it shouldn’t be scary, stressful or the centre of the universe. Quality of life has to come at the top of the priorities list. This has been hard to achieve.
We’ve taken the approach that managing glucose levels is just another daily routine, like brushing your teeth twice a day, eating plenty of vegetables and exercising regularly. Body metrics is the new fad after all and whilst others are glancing at their step counts and setting weight goals, Cass checks her CGM graph and looks at the time-in-range pie chart to measure her success.
There is no Cass vs diabetes. Diabetes doesn’t even get a capital letter. We need to give her pancreas a bit of a helping hand and as annoying as it can be when we don’t get it right, we always do our best.
As Cass would say, pumps aren’t smart, CGMs aren’t perfect and most of the variables involved we either can’t measure at all – like cortisol levels in her blood – or we can only infer from other data – like how fast a meal is digesting. Given that we have so little to work with, there’s a lot of estimation and hypothesising involved that makes it impossible to get it right every time.
It’s easy to feel overwhelmed by the constant immediacy of diabetes, so we try to take a step back regularly and place things in perspective. Diabetes isn’t the most important thing in life, it’s just one of many balls to juggle in the great game of life.
As with all juggling acts – keeping the balls in the air moving smoothly is much easier than trying to pick them up and start again and again. So I guess our overall approach is to keep our eye on marathon juggling of as many balls as we can manage between us without dropping one.
Hypoglycemia is the easy one to spot. It comes with symptoms, alarms and there is a clear point where it starts and is resolved. There is only one cause – too much insulin, so usually it’s easy to pinpoint the culprit – we’re not snacking enough during exercise, she’s overheating or we’ve set up her basal for a dawn phenomenon that never materialises.
Night time lows is a particular nightmare of ours and after a few bad ones where we had difficulty waking her up and just getting her levels above 3.5 mmol/L took forever, we invested in Medtronic’s Smartguard technology. We’ve not had a bad low in the early morning hours since she got her Medtronic CGM and most of the time we take action to prevent rather than treat hypo’s, even at night.
How many lows are too many lows
We measure how well we’re doing by the numbers. First, we separate hypoglycemia into mild, moderate and severe: Mild is valued just below 4.0mmol/L and quite often, she doesn’t even feel it or it’s mildly unpleasant. Moderate is the nastier lows where she feels miserable and her glucose value is usually around 2.5 – 3.5 mmol/L. Severe is when it’s around 2.0mmol/L mark. We don’t usually stop to measure when she’s confused, disoriented and barely conscious, we just treat it aggressively, wait about 15 minutes then test. Usually, at the 15-minute mark her levels are around 2 – 2.5 mmol/L and we have to give her a second round of glucose.
Our goal is to prevent severe episodes, limit moderate episodes to a handful a month at most and mild episodes to 2-3 per week.
Hyperglycemia is trickier to measure. It’s the slumbering dragon that stews slowly over hours before it boils over and even mild excursions into the higher numbers can have a long-term negative impact.
We aim for the NICE guidelines – keeping levels between 4 – 7 mmol/L and curbing post-meal spikes to stay below 9 mmol/L, but there’s always spikes that seem to keep going up forever and it’s easy to worry about it. At the age of 6, battling a co-morbid condition as well, her body still has many decades of battering it has to take. Hyperglycemia is stressful and I find it particularly difficult when the lines blur and it’s so hard to know how much insulin she needs to get back in range without causing her levels to go too low.
How do we know how well we’re doing on this? We look at the data. The beautiful, lovely, seductive, eloquent data compiled en masse over time.
The daily summary data
We review time-in-range and aim for at least 50% over 24 hours. We look at peaks on the graph and aim to keep these in the single digits. We look at the highest peak of the day and try hard not to top 14 mmol/L. We also keep an eye on frequency and intensity of hyperglycemia patterns. If high peaks happen occasionally, that’s okay, but it shouldn’t be happening daily.
Research indicates that postprandial hyperglycemia is a red flag for future complications. So far, one of the most challenging aspect of diabetes management has been curbing post-meal spikes to keep them under 9 mmol/L. We keep a close eye on meal spikes and are continuously working on tailoring boluses and dietary choices.
The HbA1C test is regularly carried out at hospital for those with Diabetes, usually quarterly for children receiving NHS treatment. For decades, it’s been the gold-standard of measuring, but recently with the advent of CGMs and ready access to more data, it’s been relegated to an important indicator alongside CGM data. The test measure glycated haemoglobin. This is how I explained it to Cass, when she was 5 years old:
Imagine your circulatory system as a giant road network of motorways, A-roads, high streets and even the teeny tiny roads of southern Cornwall. Imagine all of these roads are filled with smart cars – that’s your haemoglobin cells – that can only carry one passenger at a time. These taxi’s are very important because they carry oxygen, glucose and other important things to all the cells in your body. When your blood glucose levels are high, the glucose molecules become sticky. So this happens –
This is Bob – he’s a glucose molecule. He’s taking a taxi to The Lizard in Cornwall – that’s your toes – to feed the cells that live down there. He gets on the haemoglobin taxi – no problem – he’s driven at high speed down to Cornwall – no problem, but then when it’s time to get off, Bob discovers that he has a sticky bottom. He can’t get off the taxi! He’s stuck to it. The taxi can’t stop driving – it’s a robot programmed to go round and round your blood stream. So when Bob doesn’t get off, the taxi starts driving again. But it now can’t pick up any other molecules because it’s carrying Bob. Bob and his taxi drives around and around for months until the taxi breaks down and is replaced by a new one.
The higher your blood glucose and the longer it stays high, the more sticky Bob’s remain stuck to the taxis. Now imagine all these roads clogged with taxis that can’t take any passengers causing traffic jams and irate oxygen and glucose molecules who can’t catch a ride to where they’re needed. And the cells at the furthest ends – your toes and fingertips – are the worst off – as well as the cells that require a very fine balance – like your eyes and brain – as well as the cells who have to try and help sort out this mess and become overworked – like your kidneys and heart.
The HbA1c test measures how many Bob’s are stuck to the taxis in your giant traffic system. Healthy non-diabetic people have an HbA1c between 20 – 42 (4-6%). The most common target set for those with diabetes is 48 (6.5%). Our goal is to keep her levels as close to normal as possible.
It’s possible to turn data analysis into a full-time occupation. The first few months after Cass was diagnosed, I spent hours every week reviewing her data. Nine months on and we don’t give it that much thought. Type 1 Diabetes is a day-to-day thing once you’ve worked out carb ratios and basal rates. It’s keeping the numbers balanced in the middle and we do make a lot of changes throughout the day. We adjust insulin, we Fika (what we call snacks without bolusing) and most of all, we try not to get stressed out about it. We always have sugar and insulin, we can make it go up or down, it’ll work out eventually.
It’s taken a long time to build up some familiarity with the numbers. After 9 months of living with Type 1 Diabetes, we’ve come to associate numbers with diabetes-related values. We aim for an HbA1c of 42 because 42 is the answer to the meaning of life, the universe, and everything. I asked Cass the other day what her favourite number was and she replied instantly, “5.5 because that’s right in the middle – the furthest I can get from going high or low.”
Diabetes at least has numbers. Some of them are concrete, but many are highly individualistic. Each person is different, with different requirements. I wish there was more concrete numbers, but the best numbers we have are the ones we figured out for ourselves through trial and error. In the middle is a hard place to be, it requires constant correction to keep away from the edges, but at least, thanks to current technology, we at least now know where the edges are.