Mixed emotions – by Helen May

In my last post I wrote about my inner mathematician trying to manage my diabetes. Then Andy soon followed suit with his post about managing diabetes by numbers. If only we had those numbers at our fingertips. So I was very excited when I was invited to partake in a new clinical study. The purpose of the study is to understand whether having access to continuous glucose monitoring (CGM) improves the quality of diabetes care.

You may remember I partook in a study a couple of years ago and my feeling at the end of the year were mixed: interesting to be part of it but frustrating to have so much attention and justification. My memories of the frustration have faded so I was able to focus on the positives: a chance to learn more.

I have been interested in CGM for some time now. I am intrigued to find out whether my perception of the stress of climbing matched my body’s reaction by raising my BG. I react little to my readings taken within 2 hours of eating because it is not clear how much insulin is left to react and how much food is left to be digested. And unless I wake, I have no idea what happens to my BG as I sleep. A CGM could help me find answers to these questions.

In order to reduce the number of visits to the clinic I combined my first two appointments. The first appointment was to check I was suitable for the trial and talk me through what was to happen over the next three months. The second apopintment was to introduce me to the meter and explain how to attach it. So, one Friday afternoon, I went through the questionaire, gave some blood and was “plugged-in”.

I have read about CGM in the past. I read about something like a large watch. I pictured this as the type of fancy watch-come-GPS that runners wear – a bit bulky but not too bad. Unfortunately, this was not what I got. The meter came in two parts: a transmitter and a receiver. The transmitter was attached to a sensor injected into my arm (each sensor lasts about 5 days) and, including batteries, was the size of a match book. The receiver was about the size of a smart phone and had to be kept within 10 ft of the transmitter.

The receiver also acted as a “digital diary”. I had to record how much insulin I took, how many carbs I ate, how much exercise I did and my general health. All of these parameters are surprisingly close to the parameters in my formula.

The sartorially elegant part of me did not like these accessories. However, the engineer enjoyed the thought of something to play with. The “just get on with life” part of me, did not like having to record everything. But the scientist knew the reasons and felt it was worth the small amount of effort.

The first 5 days provided the control data: continuous readings were taken but I was not able to see them so I did not change my behaviour although I had to keep the digital diary. Then I was due back to the clinic to change the sensor under supervision from the nurse (after this, I would be doing it alone) and remove the mask from the readings so I could start to react and change the way I managed my diabetes.

I was looking forward to visit (as much as you can look forward to a visit to the clinic). However, there was one test I needed to pass: a blood sample was taken on the first visit to check that I satisfied all the criteria for the trial. My Hb1AC had to be between 58 and 108 (7.5% and 12%). I have had reasonably good control so I was expecting to be at the lower end of this range.

The day before my visit, I received an email: my Hb1AC results were back. They were 51 (or 6.8%).

This is where the mixed emotions came in. I was very happy to have such good control. On the other hand, I couldn’t participate in the trial. The purpose of the trial was to see if there was an improvement in the control due to CGM and with a Hb1AC of 51 they didn’t feel there was enough room for improvement. So my transmitter was removed from my arm and my receiver was packed back into it’s box and it was all given back to the clinic.

Now, I need to find someone as intersted as I am in the affect climbing has on diabetes management so I can get to play with a CGM. And see the numbers this time. Perhaps by the time I get to do this, someone would have managed to combine the reciver with a smart phone so I wouldn’t need to carry around both all the time.

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There is a huge irony here. People acheiving good control do not have the benefit of a continuous glucose monitoring whereas those who can’t – or, objectionally, those who can’t be bothered or can’t be bothered to try – get the equipment that would also be of benefit to those with reasonably good blood glucose control. (Remember, that even with an HBA1C of 51, it is still running higher than a non-diabetic and still causing damage.) I was horrified a few years ago to meet an individual at a clinic who wanted to have an insulin pump and was either managing his HBA1C high in order to qualify or had such a lazy approach to even trying to maintain blood control that he qualified for a pump.
was hoping for either managing his HBA1C to run high or (I suspect) wasn’t