No, you haven’t clicked on an old link, or got here in a
TARDIS, this is really a FreeStyle Libre review written in 2016.
I’ve finished my first 14 day stint with a sensor and I’m
thinking about what I’ve got from having it. This is old hat to a lot of
people so you can skip the TL;DR stuff if you want – I won’t be offended.
The general reaction from anyone in the Diabetes Online
Community regarding the Libre is “Oh how are you finding it?” – a fair question
to ask, but not necessarily an easy one to answer. Before I plugged
myself in for the first time, I wrote about why I’d waited so long and what I
was really hoping to get out of using the almost-CGM system.
So how did I find it?
Well putting the sensor on in the first place took a
while. I don’t think I’ve ever seen a more intimidating set of packaging
in my life so it took a fair amount of courage/encouragement/mocking before I
pushed the thing in. Yes OK it didn’t hurt, but it look like it would so
I stand by my reticence. I’d plugged it in a little before
bed so I’d have an overnight set of info to look at in the morning.
I’d set the boundaries on the reader to be between 4.8 and
7.8mmol. I’ve no idea what other people do, but it seemed like a sensible
enough range to me as that’s where I’d like most of my readings to be.
I think my overall experiences of the Libre in the first and
second weeks were quite contrasting. The first week felt positive –
I had more information that I could understand and act on. I don’t think
the benefit of the directional information can be understated but it is equally
important to fully understand what that information means, and how accurate it
is (compared to a finger-prick test). I was wary of effectively chucking
all my old testing kit in a cupboard and solely relying on something new.
I tested almost as much as normal for the first 3 or 4 days before I got
comfortable with it.
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| About as close as you're likely to get |
The second week wasn’t as encouraging. I got to a
point where no matter what I did, the Libre was showing me as “Lo”, or under
3mmol when my finger-prick tests showed something entirely
different. The thing with diabetes is that more often than not, you
can feel if your BG is too high or too low and often you test to see how
high or low it is so you can treat accordingly. Suddenly seeing “Lo” on a
reader (BG < 2.2mmol) when you feel fine is quite disconcerting. One
of the biggest discrepancies I saw was the Libre reading 3.5mmol and my BG
meter showing 8.9mmol. I know there’s an inherent lag of around 10-15
minutes, but even that didn’t explain the constant low readings.
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| The arrow is deceiving, as you can see from the constant flat red line... |
After about 10 days, I’d pretty much given up on relying on
the Libre readings in any way (though I carried on scanning it to see how it
was behaving). A day or so before the sensor died, it had got itself back
in order to a degree – constantly reading about 1.5mmol lower than a finger-prick
test at any given time. (It’s worth noting that this point that when I
phoned Abbott, they agreed to ship me a replacement sensor as obviously those
sorts of deviations aren’t good).
So what did I learn from this first foray into 24/7 data?
Well firstly, considering the three things I wanted to understand more about, I definitely noticed a dip mid-morning and having
observed it for a few days, I tweaked my basal settings slightly and noticed
the effect of that lessen somewhat.
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| Mid morning dip at about 10am |
Regarding exercise, the Libre
confirmed pretty much what I suspected, in that the approach I have at the
moment (temp basal, few jelly babies etc) seems to work really well for me,
with no noticeable spikes or dips. Being able to keep that stable BG over
distances up to around 10 miles is encouraging.
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| Short spike before running, in range (and rising) at the end |
Finally the occasional
evening/overnight spike… it’s definitely there! Work to reduce its
frequency is ongoing.
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| Blerg |
Secondly, I was amazed at how much having the sensor can
influence your behaviour – whether you want it to or not. I’ve read blogs
over the last 12 months likening having a Libre to being like a game (think
Flappy Bird) where up and downs within the blue band are OK, but do what you
can to keep it within those boundaries. Even after about 24 hours use, I
can see how it gets that addictive and I was modifying my approach to
self-management to try and keep a flatter line. I’m more likely to bolus
5-10 minutes before eating now as a result of the Libre. I’m also more
likely to try and ‘nudge’ my BG in the right direction if I see it falling or
rising quickly.
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| Cured. Sort of. |
The flip side of that is that diabetes with a Libre is a
full time job. More information seems to breed more action, which in turn
breeds even more information. If moving from pens to a pump is more of a
constant reminder of living with diabetes, then throwing a Libre into the mix
is basically signing your entire existence over to it. I also think that
the abundance of information is meaningless if you aren’t understanding and
reacting to it properly. Stories of people treating high BG with temp
basals, or constantly fiddling with those basal settings every few hours of
every day to try maintain a flat line isn’t (in my humble opinion)
helping. I think if you’ve got access to the information you need to be able
to look at it objectively and make longer term changes. I think
information overload can easily be a contributing factor to diabetes burnout.
Obviously, the readings from the Libre are great when you
can trust it. Once you can’t, it becomes meaningless. I don’t know
how often other people finger prick test alongside scanning, but I felt like I
needed that reassurance that the daily graph was worth looking at.
Towards the end of the sensor, I felt very demoralised by the whole process if
I’m honest. I felt like I was suddenly second guessing my every move,
faced with a lot of information and decisions that I couldn’t make sense
of. I’ve had type 1 diabetes for 13 years and I haven’t been in a
position where mentally, I felt like I did last week in about 10 years.
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| Finger-prick results never read below 4mmol... |
Finally (you’ll be relieved to read), I was surprised by the
little differences the Libre made. I was really conscious of not laying
on the sensor while I was sleeping. I was very conscious of knocking it
while I was walking or showering, and even getting dressed became quite a
cautious activity. I’ve no doubt that’s my own personal risk aversion,
and not the experience of the majority, but it was definitely a noticeable
behaviour change.
So where do I go from here? Well I’ve got one more sensor
at home, and a replacement on the way, so the experiment will continue.
I’m going to wait a week or so before going again (so it coincides with being
away for a week, where I think the convenience will be most beneficial).
I definitely think an accurate sensor could play a very positive role in my
life with diabetes, and probably lead to improved HbA1c results.
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| From the first week, where it worked properly |
I
suspect that more frequent use would mean those behavioural changes become more
normal (or at least less noticeable). I don’t want my life to be 50
scans a day, along with constant small insulin doses or 5g carb snacks.
That’s not living to me, that’s just existing. I want the ability to test
at convenient times, get information I can trust, and learn how I can make
simple adjustments, to remove the variability in my BG as much as is reasonably
possible.
So is the Libre for you? I can’t tell you (and neither
can anyone else). Like a pump, it’s a personal decision that you have to
investigate for yourself. I think it’s worth investing £130 (if you can
spare it), to get a reader and two sensors so you’ve got enough time to make an
informed decision. If you’ve made it this far through the post, hopefully
you’ve got some things to consider for yourself, but what works for me might not
work for you (and vice versa). However you choose to manage your diabetes
is an entirely personal thing, and don’t let that change.
