Libre reader versus LibreLink

[rebrascora]

As many of you know, I am a big fan of the Libre reader, but a few months ago I swapped to using my phone and as a result upgraded to full CGM. It has been an interesting experience and the phone app mostly worked really well with a few "loss of signals". I am using an old iphone which I specifically got so that I could use it with my Libre and I will admit I really don't like it compared to my old Motorola but I have been battling on hoping that I will eventually learn to get on with it, but when I am hypo I really struggle to get my head around operating the Librelink app and being unable to cancel the alarm instills panic when I am normally very confident dealing with hypos. My TIR has dropped from my normal low 90s which I have sustained since I got Libre nearly 4 years ago to about 87% over this period with the phone app. I appreciate that there is another factor at play as I am now taking Amitriptyline regularly and I do think this has impacted my TIR too.

Anyway, I replaced my sensor on Monday after the old one expired on Sunday (I fancied a day off as I was getting chewed off with it and I wanted to change the changeover day anyway) and decided to go back to using my reader with the new sensor. I know I am only 4 days in but already my graphs are steadier and my TIR better and I feel more confident about managing it and less frustrated. I also notice that the algorithm is different between the phone app and the reader and I am pretty sure the reader suits my body better.
For instance, a few minutes ago I did a scan with my phone and it gave me 7.1 with an upward sloping arrow. I immediately did a scan with the reader and it gave me 6.7 with an horizontal arrow. I had a feeling when I started using the phone app that the algorithm was different but I had no way of checking since you can't use the reader if you start the sensor with the phone app. I accept that is not a huge difference but after 3.5 years of fine tuning my diabetes management with the reader, I believe it has lead to some decisions I might not have made otherwise.
For instance a 9.3 with an upward slanting arrow (my alarm is set at 9.2) would cause me to inject a 2 unit correction but an 8.7 with an horizontal arrow would not or I might just inject 1 unit.

I appreciate it is still very early days and I am trying to keep an open mind but I have slipped back into using the reader so very easily and comfortably that, that alone is worth a lot to me. Yes, it means I don't have rt-CGM but I find it easier and more convenient to get my reader out and scan than get my great lump of a phone out and switch it on and get my reading. There are also no worries with updates of operating systems causing mayhem as has happened in the past and no signal loss issues. Just plain and simple scan and get a reading. The novelty of having rt-CGM was interesting, but I am actually surprised at how much happier and more comfortable I am going back to my reader.

 

[Bruce Stephens]

I appreciate it is still very early days and I am trying to keep an open mind but I have slipped back into using the reader so very easily and comfortably that, that alone is worth a lot to me.

Seems to me that's sufficient. I'm not sure there's that much difference between looking at a phone and scanning and looking at the reader. (There is a difference between scanning with a phone and using it in CGM mode, but the reader is easy to scan with when you remember to scan the correct arm.)

 

[rebrascora]

Yes, I tried to scan the wrong arm with my phone just now to get those comparison readings and I am 4 days into a new sensor/arm.
I do wonder how many newbies would have a better experience with Libre if they were starting with the reader rather than a phone, especially those who suffer signal loss a lot. My feeling is that the phones themselves are much more of a factor than faulty sensors or at least increase the likelihood of having more issues. I personally think it is a real shame that Abbott don't promote the reader. I am so pleased I started out with it.

 

[helli]

I think it depends on how comfortable you are using a phone for other things in your life.
My phone is always with me so the idea of carrying around (and potentially losing) the reader was enough to put me off.
I also went straight to rt-CGM with the sensor add-on and third party apps so from day one Libre was phone based.
Maybe if I was less phone-literate and had started with scanning, I would feel different.
And anyone starting today would get the rt-CGM with the phone so maybe likely to see the scanning with the reader a step backwards so I can see why the reader is "in decline".

It is another way that we are all different but good to see you have a solution that works for you regardless whether it is the normal, the most advanced or the one that suits me. Other people's preferences are irrelevant.

 

[Bruce Stephens]

And anyone starting today would get the rt-CGM with the phone so maybe likely to see the scanning with the reader a step backwards so I can see why the reader is "in decline".

Another good reason is that it's rather hard to get a reader now that they've stopped selling the things.

 

[Inka]

I never used LibreLink nor even bothered to check if my phone was compatible. I only used the reader. Now I’m on the Dexcom G7, I also only use the receiver. That’s not just because my phone isn’t compatible but because I prefer it. I’ll be getting a new phone soon but won’t bother to choose one that’s suitable for the G7 as I love the receiver. For me, I find the clarity and simplicity much better. I don’t want the D to take up any more of my headspace than necessary.

 

[Robin]

I’m another fan of the reader. I didn’t own a smart phone when I first started with the Libre, and now it’s second nature in the night to grab the reader, press the button and scan. Using my phone would involve me waking up fully to unlock it, etc. And I don’t take my phone up to the bedroom with me at night.

 

[Bruce Stephens]

Using my phone would involve me waking up fully to unlock it, etc. And I don’t take my phone up to the bedroom with me at night.

Yes, I used to do the same (with my reader under the pillow). Now I have Juggluco working on my watch I can just press the button on the watch (normally the screen is off at night) which is slightly easier even than the reader.

 

[helli]

For me, I find the clarity and simplicity much better. I don’t want the D to take up any more of my headspace than necessary.

I found the Libre Reader too small to show enough detail for me and the phone app was clearer.
But I get the idea of less D headspace, though.

I now use the Medtrum CGM. When I first started with the pump, I had a "remote control" which was better than taking my pump out (especially as it is a patch pump) but was grateful when they offered a phone app as, again, it is easier to see detail and the controls are far less fiddly. And, now I have the CGM, it uses the same app so I can see my BG as well as insulin dose, IOB, etc. all on one screen. I take the Medtrum remote control away with me in case I have a problem with my phone but it is definitely less convenient.

 

[rebrascora]

Just an update after being back to using the reader full time for the last 11days, my TIR is currently 97% (for past 7 days) yet for the last 3 months of using my phone with LibreLink I have struggled to get above 87% TIR for any 7 day period. It might be a coincidence, but I definitely feel more relaxed and that I have much better management with the reader. My daily graphs are much more stable. Interestingly, the first day after the change over was the least good daily graph and since then they have all been really good, even though I have had occasional treats like a fish and chip supper late on Thursday night.
Maybe it is just the familiarity of the reader since I have been using it for nearly 4 years but I genuinely feel the algorithm is slightly different and as a result I am less likely to make rash or incorrect decisions with it, particularly with the timing of eating food after I have injected, when obviously levels are changing more.

Still early days and I intend to swap back to the phone at some stage to see if my results drop back again, but so far, much happier and not missing the rt-CGM feature at all.

Feeling a little apprehensive about the roll out of the Libre 2+ in case it has a slightly different algorithm too as there are claims that it is more "accurate", which has to mean an algorithm tweak I would imagine, although surely the algorithm is in the LibreLink app or the reader, so probably talking through my hat, since I am a technophobe. I am hoping/assuming/praying 🙄 the Libre 2+ is still going to be compatible with using the reader.

 

[Proud to be erratic]

What bugs me about all of this is that there are 2 distinct things going on: unreliability and change without clear detail about the new product.

The unreliability is part of a much wider problem with technology. We are pushed to use the Internet for everything nowadays; life was challenging enough when the unrelenting desire for data led to unrelenting time at a keyboard, documenting every last thing so that someone (or worse something, usually traceable back to Artificial Intelligence) could interpret that data and make money for someone. That could be beneficial, within reason. But the tech was never particularly friendly (eg completing poorly designed forms with unstable hardware) and certainly today's tech needs constant upgrades to counter the hackers determined to exploit the unnecessary weaknesses, alongside constant roll outs of "new" hardware in pursuit of us spending ever more money. Just to worsen that aspect the AI assesses each individuals net worth from the data we're forced to reveal from entries into our insecure browsers and if possible provides quotes at a price point the AI has assessed one can afford. Your normal quote has no relation to actual value. Insurance (house, possessions or car) demonstrate this. [If you don't believe me, for your next insurance instal a 'virgin' browser with zero history of you in its cache and make a search for a renewal quote; you will be amazed at the saving from what the search on an established browser will quote].

Meanwhile most tech (hardware or software) is blatantly designed to only be <80% correct; the incorrectness is the user's liability. A plethora of legal loopholes protect the provider.

Then we have the change without clarity. Getting a clear understanding of what Libre 2 Plus is going to provide is at best opaque; likewise with Dexcom One and its very different One+. Never mind when, what platform is best, etc. All of that opaqueness worsened by NHS delegation of responsibility and accountability to ICBs that are more notional than real, of no fixed abode except a Web address and with those applying the "Guidance" in a haphazard way. We users have very little opportunity to plan anything; one tiny example my 4 yr old phone is dying and finding the appropriate next thing is almost more stressful than the existing mess of unreliability with alarms that don't happen as intended and poorly thought through apps.

Sorry @rebrascora, my rant distracts from your interesting narrative about reader vs phone app. I should say the Dexcom Receiver (Libre's Reader equivalent) is a lot more friendly than the Libre Reader. Not least because it is not only rtCGM but works alongside the phone app and continues working when the app has crashed. Only a sensor failure stops the Receiver.

 

[rebrascora]

Interesting that the Dexcom receiver is better, but I really think that both systems would be so much more reliable if everyone was issues with such a device. Many of the problems people experience is down to issues with the software or hardware on their phone and whilst I appreciate many people don't want to carry another bit of kit, the Libre reader can also double as a BG meter for those who drive. I wonder how many perfectly functional sensors have been replaced by Abbott simply because people are experiencing problems which originate from their phone or the app. I would bet at least 70%, probably higher because I simply don't experience problems with Libre sensors at all and it has been occasional poor placement or carelessness, leading to them being dislodged or disturbed which has resulted in any issues I have had over the 4 years of use.
Of course this is n=1 and I also know from your experience particularly but others too that Libre doesn't suit everyone and from my very small experiment between the app and the reader, that just very slight differences in the algorithm can make a big difference to results.

I will say that I was really apprehensive about upgrading to the Libre 2 from the original Libre and that upgrade actually turned out to be at least the same or perhaps slightly better, but then the upgrade to the app was a step back, so I am trying to remain positive that the upgrade to the Libre 2+ will also be a positive step assuming I can continue to use it with the reader. I will however not be chasing the upgrade because I very much doubt I can do better than the mid to high 90s TIR I am currently getting.... Newer or more features or automatic is not always better in my opinion, just more potential for something to go wrong. If I could still get a car with manual window winders I would! 😎

 

[JJay]

I wonder how many perfectly functional sensors have been replaced by Abbott simply because people are experiencing problems which originate from their phone or the app. I would bet at least 70%, probably higher because I simply don't experience problems with Libre sensors at all and it has been occasional poor placement or carelessness, leading to them being dislodged or disturbed which has resulted in any issues I have had over the 4 years of use.

I can’t imagine it’s anywhere near as high as 70%!

Like you I have had minimal problems with Libre over 5 years of use - 3 failed sensors and 5 lost through carelessness. My use of a reader (Libre 1 only) lasted a mere few days of frustration and I’ve been happily using LibreLink ever since. I needed to reinstall it once when the change to rtCGM happened, but otherwise no problems.

From the posts I see on the Freestyle Libre Facebook group I would surmise that the vast majority of problems are down to not following the instructions!

 

[rebrascora]

From the posts I see on the Freestyle Libre Facebook group I would surmise that the vast majority of problems are down to not following the instructions!

I can only judge by what I see on this forum as I don't use facebook and I wouldn't necessarily say that people don't follow the instructions but more that they perhaps haven't developed a good application technique and best placement. I personally think that the instructions could be more involved or detailed but you run the risk of people not fully reading them if you do. I think most of us are guilty of just having a go first with various gadgets and only going back to read the instructions if it doesn't work and we have to figure out what we missed.

Looking back, it was self funding that made me very, very wary of making a blunder during the sensor application process because I simply couldn't afford to blow £50 and at the time I had no idea that they would replace it if I made a mistake and it didn't work. As a result I was particularly careful at every stage and I still am to a large extent. For instance I blast my arm with a warm hairdryer to ensure it really is completely dry before I apply it. I hold the applicator against my arm for a count of 100 before I try to remove the applicator to allow the adhesive a bit of time to bond with my skin in case the applicator doesn't come away cleanly, which it rarely does. When I remove the applicator I sort of wriggle and twist it rather than just pull so that it is less likely to dislodge the filament if the adhesive doesn't keep it well bonded to my skin and I press it down well after application and then place my elastic arm band over it for at least the first 24 hours to improve the adhesion. None of those things are mentioned in the instructions but I am sure that they lead to my very high success rate with sensors.

There are however lots of people reporting loss of alarms and the signal dropping out with their sensors here on the forum and I am certain this is a hardware or software issue with their phones or the app. I didn't have many problems in that respect with my old iphone but sometimes I lost my alarms through the night when the phone was on the bedside table next to me and I could be marginally in the red for several hours before my body woke me up. My reader never loses signal or alarms like that and that could account for some of my improved TIR thinking about it.

 

[PhoebeC]

What I don’t like about the libre app is it can be so way off the actual level and there’s no way to overwrite or override the log.
Such as compression lows, if we could flag false / incorrect readings 1) we and our medical team could see it in the data 2) libre could see all their faults

 

[helli]

The biggest issue for me with Libre is that the app and reader do not allow calibration.
As unofficial third party apps are able to do this, it is clear that the calibration is done in the calculations: the sensor is not changed to adapt to different baseline. So why does Abbot not allow it. Dexcom does with the Dexcom ONE.
Many of the issues with Libre are about reading to high or too low or someone believing everything the sensor tells them. If we are able to calibrate I think it sends the message that we are all different so it may need a tweak/personalisation.
As I used third party apps from the start and my CGM now allows calibration, it has become part of my daily diabetes management to take a finger prick at the start of each day for calibration purposes. Often, I do not need to do anything but it gives me confidence in the sensor.

 

[Bruce Stephens]

What I don’t like about the libre app is it can be so way off the actual level and there’s no way to overwrite or override the log.
Such as compression lows, if we could flag false / incorrect readings 1) we and our medical team could see it in the data 2) libre could see all their faults

On the other hand, a compression low is for (at most) an hour, and when a sensor is reading a bit low (which has happened) it messes up my TIR (showing I've been low for too long) for 14 days (presuming I don't replace the sensor).
It's irritating but I'm not sure I care that much. To be honest, I'm not sure I care enough that I'd correct readings even if the software let me.

 

[helli]

The "problem" for me with compression lows is not the dip in the graphs or even messing up my TIR stats.
It is the unnecessary disturbance of my valuable sleep.
I know I can turn off the alarms but then I miss the real low.

Thankfully, over the years, I have found my sweet spot of sensor placement so compression lows are rare for me.
Some people (who I consider "magical") are also able to adjust their sleeping position but that is just fanciful talk in my bed 🙂

 

[rebrascora]

On the other hand, a compression low is for (at most) an hour, and when a sensor is reading a bit low (which has happened) it messes up my TIR (showing I've been low for too long) for 14 days (presuming I don't replace the sensor).
It's irritating but I'm not sure I care that much. To be honest, I'm not sure I care enough that I'd correct readings even if the software let me.

I think it may depend on how "twitchy" your health care professionals are about time below range. I have a predisposition to nocturnal hypos even when I have adjusted my night time Levemir down to zero, so I often struggle to hit the less than 4% below range target. Thankfully my consultant is very happy with my diabetes management and doesn't see those lows as a problem and I am happy that I am managing them as well as I can and they don't bother me or impact my quality of life and in reality some of them are most likely not quite hypos but I no longer check them but just have a JB or two and go straight back to sleep. Mostly they are very mild. I am sure there are other DSNs and consultants who would have a fit if they saw those regular nocturnal lows, so being able to notate them would perhaps be useful if you had clinicians who are critical or anxious about hypos instead of supportive.

 

[Bruce Stephens]

I think it may depend on how "twitchy" your health care professionals are about time below range.

Sure, but whenever I've had conversations about anything to do with diabetes it's been with people who are fine acknowledging issues like this. I'm sure they'd be fine understanding that yes, I checked with test strips enough so that I'm confident it was just the sensor reading a little low (just not quite low enough that I felt it necessary to replace it).