Issues with Freestyle Libre

[jsee]

New forum user here from Canada. I came upon this forum while surfing for Freestyle Libre problems and issues. It's interesting and a little disturbing to see that others have had problems similar to my experience and that it's not just me.

I am Type 1 for 47 years, so I've been doing this for a long time - even before BG meters. I still have all my hands, feet, vision and hair, and my A1C is usually below 6. I know what I'm doing, and I've been doing it without the Libre for most of 47 years.

I have been using the Freestyle (not the Freestyle 2) since February, 2021, and it's been a mixed experience at best. I love the convenience and data density, when it works. I've only had one sensor fall off (out of 18 used so far), but wild inaccuracy and outright failure are recurring problems, as described by others on this forum. So far, Abbott has replaced 5 sensors, and they'll replace a 6th tomorrow (today for you in the UK) because I just yanked a new sensor off after my first attempted scan an hour and a half after starting it because the reader announced the sensor wasn't working. At all.

My routine is to place it on the back of my upper arm as directed, start it, and then start scanning a couple of hours later. For the first 24 hours, I will often do a finger prick and then a scan 10-15 minutes later to see if there are systematic errors for which I can compensate, or if there are varying errors in excess of 20%. When I get a good sensor, my personal latency seems to be about 12 minutes.

I log the data in a spreadsheet with times and readings so that I can accurately report to Abbott what's going on if I have to call them. I have offered to send a PDF of my spreadsheet to Abbott, but they have not been interested so far. I sent them one anyway, and just got a canned response from customer service that indicated they hadn't looked at the spreadsheet or read the accompanying e-mail.

Like I said, it's great when it works. That said, a failure rate of 33% for a device used to measure such a critical life parameter, even if it's supposed to be backed up by another measuring technology, seems excessive. I'm beginning to think that if I have to use so many finger pricks to check the Libre, then I might as well not bother with the Libre.

"You want to complain?!? Why, look at these shoes! I've only 'ad them three weeks, and they're already half worn through! You can complain if you want to, but nothing happens. You might's well not bother!" - Monty Python

 

[becca59]

Welcome @jsee am interested that you live in Canada but are using Libre. My brother recently moved over to Toronto. He used the Libre over here but they very quickly had him moved to Dexcom which he loves. Is it a possibility for you?

 

[jsee]

Maybe, but probably not right away. Private insurance pays for my Libre sensors, and they won't pay for a whole new setup in less than a year. The Dexcom is also much more expensive, and reports suggest their customer service is so-so. I'll be doing more research on it as the one-year anniversary approaches.

 

[robcrowborough]

I am a Type 1 diabetic and have been since 1999. Being self-funding, I first started using FSL1 in 2015. Apart from a knock-off incident and an adhesive failure, the sensors and the reader worked well until I started to react and become sensitsed to the adhesive on the sensors. After using the sensors for a period of about 3 - 4 months, I had to give up using the system because of the damage to the skin on my arms despite trying several skin-protecting techniques that other users had tried.
In 2019, having read that Abbott were introducing a new system with sensors which relied on a re-formulated adhesive, I contacted Abbott's helpline to try to establish what changes had been made to the adhesive and/or whether it contained any of the known sensitisers. I could not get a straight answer but was sent a new reader in case I wanted to try the new sensors. I did not take the matter any further at that time.
Recently, in an attempt to get better control of my BG, I ordered 2 x FSL2 sensors intending to "read' them using my Nokia 3 (TA-1020) smartphone.
The first sensor was inserted through a 3mm diamter hole in a 5cm square piece of Opsite stuck to my left upper arm. It initially connected with my phone but the alarm system failed to operate consistently and the sensor ultimately failed completely after less than 36 hours' use.
The second sensor failed after less than 24 hours' use with the alarm system seemingly cutting in and out at random.
The third sensor (1st replacement) seemed to start well but then began to read my glucose levels intermittently and at a level of 6 - 10 mmoles/l above my finger prick glucose levels. It failed after less than 48 hours' use.
I contacted Abbott's helpline and explained the problems that I was experiencing. I wondered if there was an incompatibility issue between my phone and the sensors. I asked if my unused, two year old reader was compatible with current sensors. After checking the reader's software version (2.4.8 1.00.), I was told that the reader was compatible with the recently-issued sensors.
I regret report that, although the fourth sensor seemed to be initiated by the reader and advised me that it would be ready to use within 60 minutes, it failed to give any kind of glucose level reading when challenged by the reader after 65 minutes. I then tried to initiate it using but phone but, unsurprisingly, it failed. Abbott are going to send me another replacement sensor.
Am I just being unlucky with the sensors that I have received? Any comments or thoughts would be appreciated.

 

[BravoKilo]

4 FSL2 sensors used so far,
1st sensor (on free trial!) worked ok, over-read compared to finger prick (Concept one) or finger prick under-reads but within error margins allowing for error on both devices; a couple of readings were very different & Abbott sent a replacement
2nd sensor: lasted one day - fell off while washing down a boat ( not sure what activity that counts as!), was sweating a lot & wearing a rugby shirt so partly my fault?
3rd sensor: lasted less than 1 day, wouldn’t work - on removing found that pin was bent. Clearly have to be careful when applying. Abbott sent a replacement.
4th sensor. After trawling YouTube for tips on applying etc , placed on inner part of upper arm. Seems to be working fine & surviving exercise, workouts and showers. Overreads compared to finger-prick, but most of the time they are fairly close.

(T2d just using the FSL2 temporarily to try to understand why my sugar spikes are high)

 

[lindaburner]

I have threatened Abbott that I will be contacting NICE, because every sensor I’ve used has given massively lower readings compared to blood sugars. Last week librelink app gave me a 2.9 reading when my BS was actually 19.0, & ketones were present!
I am on the phone every fortnight complaining to Abbott, I left bad reviews on the app store, but all they do is send me more sensors. Let’s face it the product does not function as advertised. Alarms fail to work, etc. Out of 2 weeks I generally get 1 accurate reading that matches my BS. Simply NOT good enough.
TYPE 1 of 48yrs, pumping for 7yrs, so I’m not new to this.

 

[robcrowborough]

My thanks to BravoKilo and lindaburner for their responses to my message. It is my impression that there are more problems with current batches of sensors and/or with sensors reliably communicating with readers and smartphones.
After another failure with my fifth sensor and reader, I have been promised a new reader and another replacement sensor. Given that I understand that FSL2 readers are currently in short supply, I don't anticipate being able to try the sixth replacement sensor and the new reader combination any time soon.

 

[Languagelearner]

I ordered the free trial of a Libre 2 sensor - worth a try. It was quite exciting to use at first, but after one day of use it fell off in the bath. There is no way I would pay £50 every two weeks for this...

 

[Lakeslover]

Contact Abbott and they will replace it.

 

[bonerp]

I've had multiple failures of the Libre 2. Every month out of 2, currently 2 are failing and being replaced by Abbott. I didn't have these issues with libre1. This has been ongoing got several months.
Each time I call I question why they fail after 2 hrs of installing them. Denial of problems.
I had failures on the medtronic device but not. As frequently as these. I've also checked when my bgs are reporting high yet I feel fine, done a finger stick and it's been OK. Could be hydration but still worrying to rely on these.
BTW I use tegaderm covers when paddleboarding or in the water a lot. Keeps them on but remember to make a hole in the middle to allow it to breath.

 

[DavidDK]

I have lost count of the number of Libre 2 sensors that have been faulty since I began using them.

Had an applicator that wouldn't insert into a sensor pack because it was poorly fabricated during manufacturing; sensors have given up the ghost well within the stated 14 day run time; have started a number of sensors for the 60 minute warm up only for the sensors fail to start at the end of the 60 minutes. Have even had two newly inserted sensors fail to work on the same day, one after the other.

I thought the problem might be a particular batch of Libre 2 sensors bearing a particular batch serial number made between certain dates. Unfortunately now I don't think it is as simple as that.

My biggest concern is that the Libre 2 sensors tend to read significantly lower than an actual blood glucose reading of anything up to 3-5mmol.

I've seen some counsel on this forum "well with the Libre the trends are more important." And I agree, the trends one gets with the Libre are important and very useful. But, here's the thing: that difference of 3-5 mmol (15 minutes between Libre 2 reading and glucometer reading being taken on three occasions) appears to be enough to persuade their customer service personnel that the Libre 2 sensor isn't functioning properly.

We know the Libre 2 sensor uses a different algorithm to the Libre 1 sensor to provide (in theory at least) a trend glucose reading that is closer to a blood glucose reading. We also know that there will always be a difference between blood glucose and interstitial fluid readings.

If there is a mismatch between a Libre sensor reading and how we feel/any symptoms at that moment, we ought to take a blood glucose reading to confirm our blood sugar levels before making a treatment decision or taking some other important action. Everyone understands that.

That said, if I am having constantly to check whether my sugars are within range because the alarms triggered by my Libre 2 sensor, and the trend graph when I scan the sensor to check what's happening, indicate continually that my interstitial fluid levels are going/have gone hypo or hyper, (and even more alarmingly are staying that way - according to the Libre 2 - for too long) one does have to ask "well, what's the point of using the Libre 2? I might as well just do blood glucose tests instead!"

I don't want to have to switch back to the Libre 1. I like the functionality of the alarms. And I don't want to have to attach a third party device to the sensor nor use third party software in order to get a more accurate reading.

Abbott customer services have always been extremely helpful. Whenever I have had a problem with the sensors they have always sent me a free replacement and I have sent the faulty Libre 2 sensors back to them.

My understanding from customer services is that Abbott are aware of the various issues and are "working to resolve those issues."

Being able to get a free replacement from the manufacturer quickly and easily is fine. However, free replacements can never be a substitute for a consistent, reliable, accurate product.

In the United Kingdom it is the Medicines and Healthcare Products Regulatory Agency ("MHRA") that approves medical devices for use by members of the public, not NICE. There is the MHRA's "Yellow Card" reporting scheme which allows patients to report incidents involving a medical device. The MHRA's Yellow Card reporting tool can be accessed online.

I suspect that the parameters within which glucometers/flash/continuous glucometers are considered to function "satisfactorily" are relatively broad, so I don't know how many of us would need to report a Yellow Card incident before the MHRA might consider doing anything.

But there is another option.

Apart from using the Yellow Card Scheme directly, the appropriate way to make concerns known about a medical device is by speaking to one's GP/diabetes consultant/DSN who I understand are obliged to feed their patient's "adverse incident" through the proper channels within the NHS and to the MHRA.

I really hope Abbott is working extremely hard to resolve the various issues many of us have experienced. The issues I have experienced have gone on far too long. For me the Freestyle Libre has been a transformational product. But it must remain reliable and accurate, otherwise there is no point.

For those of us who get the product via the NHS, I encourage you to report any issues you have had directly to your GP/diabetes consultant/DSN. They ought to report those issues through the appropriate channels.

Let the NHS (the manufacturer's largest customer in the UK) put pressure on the manufacturer to fix outstanding problems.

 

[KennyA]

Hi all. I tried a Libre 2 through their "free trial" offer - I am interested in what happens to my BG overnight. Initial reading matched my fingerprick test - seemed good!

Two hours later when I scanned it was telling me my BG was 2.9. It really wasn't. Went to bed, and in the morning the sensor had completely stopped working - I suspect it had actually stopped working almost as soon as it was fitted.

I found it difficult to contact Abbott - the customer service contact isn't obvious, so I've posted on their Facebook page.

 

[deniski]

I have had lots of problems with the Libre 2 and after the last time when the sensor just stopped working I’ve gone back to the original Libre.
« reading not available, try again in 10 minutes « that sometimes goes on for hours, the last problem was away on holiday and the sensor just stopped working after 6 days, I had 10 spare blood strip tests but was forced to go buy a blood testing kit in a French pharmacy. While Abbott reacted, they sent me a Libre 2 replacement which I had specifically said I didn’t want and they refused to refund me the costs of the blood testing kit.
I’m not impressed, I thought these medical items were tested and tested before public access !

 

[lindaburner]

I complained to my consultant at a pump clinic call this week about the disparity between libre readings and blood sugar tests. She told me the libre 3 will be out later this year, & it’s going to function more like a cgm. Let’s wait & see