Unreliable Libre2s

[Merluza]

Over the last 8 sensors I've had 3 that were uncannily accurate, 1 that was close but not that close, 3 that have died and the most recent one that I'm confident will be dead by the morning, it's been reading between 2.8 and 3 since application and is currently reading 3 while the finger prick said 7.6.

This is more than useless. Do those of you using 2+s have better results? As I'm getting such useless and possibly damaging info I'm seriously thinking of just giving up on them.

 

[Merluza]

113 views and nobody has a comment?

 

[Bruce Stephens]

113 views and nobody has a comment?

I guess because it's been discussed a lot. See https://forum.diabetes.org.uk/boards/threads/cgm-limitations-and-precautions.108188/ for a general thread.

Some people find they get on better with Dexcom One+ (if Libre 2 Plus doesn't work well) and some people find the opposite. Some people find they get a string of sensors that fail (perhaps because a batch has some fault, or perhaps just coincidence). I think most of us get a sensor now and again that doesn't work right (usually just sticking at some low values).

 

[Lucyr]

This is more than useless. Do those of you using 2+s have better results? As I'm getting such useless and possibly damaging info I'm seriously thinking of just giving up on them

Report to abbot and replace them. Or go back to fingerpricking or a different sensor if preferred. It’s all personal to you, other people’s accuracy experiences on libre make no difference to your experience because accuracy is individual to the person and details of their body

 

[Natalie123]

I have used the original Libre, Libre 2, 2+ and now 3. I have had faulty and inaccurate sensors with all of them. I find the first 24 hours are often very inaccurate and for this reason, I apply my new sensor the day before my current one runs out to give it a day to 'settle in'. This seems to have helped with a lot of the problems I was having before. I did have a run of bad sensors, I don't know if it was a faulty batch or just coincidence but my pharmacist said that they had heard lots of people were struggling with them at that point (this was a few years ago). Do contact Abbott, either by phone or using their online form to report the sensors and they will send you replacements.

If your sensor is consistently reading low, when you remove the sensor check whether it has actually gone under the skin properly. If it's kinked or folded then it didn't go in properly. I had a lot of problems with this with Libre 2 and 2+ and found that it was best not to apply a new sensor after a bath or shower or when I was very warm, I don't know why but my skin seems to be less easy to break through! I also struggle to insert new cannulas or inject when my skin is too warm! I've never heard anyone else having this problem though so it might just be me.

There are other brands of sensors that you can try if you don't get on with Libre but there will always be a bit of error I think.

 

[PhoebeC]

In 5 years of using all libres I hand maybe 2 inaccurate sensors, hence not commenting.

Around 3 that either didn't stick, or fell off, 1 that bent as it went on and a few that just didn't work, but all as soon as they went on or in a very quick period of time. I found them to be very good quality, every now and then there seems to be a bad batch but no product is perfect.

I had no issues until I moved onto the Ominpod 5 and then libre 2+ just wouldn't connect to the PDM, it connected with my phone app fine, only the PDM / Omnipod 5s it didn't like. I am not even sure this is the fault of the libre's.

I do know from my DSN that some peoples bodies just do not work with certain CGM's or with any at all.

I have had more issues with the Dexcom 6 in the 4-5 months than I had in nearly 5 years if libre.

The 24 hours is a thing for some users, wasn't for me.

Report the faults, abbot are good at replacing.

Ask your team / GP if you can try another.

 

[PattiEvans]

Mine are usually extremely accurate and I have been using them since shortly after they came out (i.e. Libre 1). I think I've probably had more duff 2+ ones than previous ones. I'm now on Libre 3+ since 1 May and in that time have had one that just wouldn't start, but on the whole they've been very good.

 

[helli]

One of the reasons I used xDrip+ rather than LibreLink app was because I was able to calibrate the sensors to my body.
They were consistently out if I didn't.
I have not used Libre 2+ so do not know if they have improved.

 

[Merluza]

Thanks for your replies. I've using finger pricks for the last 5 or so days and I'm trying to decide whether to restart the libres. I currently have 4 unopened boxes so I feel under some obligation to give them another go.

 

[Proud to be erratic]

Thanks for your replies. I've using finger pricks for the last 5 or so days and I'm trying to decide whether to restart the libres. I currently have 4 unopened boxes so I feel under some obligation to give them another go.

Personally, in your position, I would try again. I am aware that you have been managing your BG for over 40 yrs, so for you CGM doesn't feel so beneficial as it was for myself.

I spent my first 12 months without CGM and finger pricking only. My BG management was really poor. Once I was given Libre 2, almost instantly my D management improved.

DESPITE my Libre 2 being very inaccurate and unreliable. It transpired that my body and Libre 2 were woefully incompatible; I had over 50% Libre 2 failures during the next 12 months. HOWEVER, I quite quickly learned to compensate or mitigate for my Libre inaccuracy and unreliability; whatever the numbers were the BG trends were identifiable, reliable and easily readable with the displayed graph. I couldn't trust any Libre reading for dosing, particularly corrections. But I could anticipate BG falls and prevent hypos, thanks to CGM alarms; also I could see BG rises, finger prick and then make informed bolus correction decisions. Consequently I quite quickly got off the Diabetes roller coaster and achieved a reasonable TIR (within my own appreciation and recognition that the numbers were often not guaranteed as being correct, thus in range was questionable).

There was certainly CGM stress from the uncertainty over accuracy of displayed numbers and stress from sensor failures. But I was seeing reduced BG variability with smoother BG graphs, week after week, thanks to not having to wait for hypo symptoms before needing hypo treatment and thanks to more timely corrections reducing serious hypers to minimal. I couldn't get that feel for my BG management from fps alone.

The NICE Guidance Note (NG17) revise in spring '22 recognised that some people were not compatible with a particular make of CGM and made it very possible to request a change. I took advantage of this new enlightened stance by NICE to move from Libre 2 to the original Dexcom One - now superseded by the Dexcom One+. This provided an immediate improvement in reliability and accuracy. As an experiment I self-funded Dexcom's G7 and found that to be very much better for me. Fortunately my Hospital recognised how much better I was doing with G7 and took over that funding. That was a financial relief. If Libre 2 continues to be inaccurate for you, then perhaps consider trying the Dex One+ - which is a no-cost process for NHS funding and firmly within the gift of a GP to write that script amendment. In practice each GP Surgery in-house Pharmacist, who advises each Practice on the rules and regs of prescribing, will know a switch from Libre to Dex One+ is cost neutral and will probably implement the change without resistance.

This year I can fairly claim I've had no serious hypos and less than 5 very minor drifts into hypo territory. Even though my Diabetes is very brittle and I can crash extremely quickly. I make full use of the excellent G7 Alerts (equivalent to Libre's Alarms) and if I go much above 12 or 13 it is invariably my fault for not responding to rising BG Alerts; my complacency! I will find out next month if this gets confirmed by a reduced HbA1c. Hence my view is do try again @Merluza.

 

[casand2011]

Over the last 8 sensors I've had 3 that were uncannily accurate, 1 that was close but not that close, 3 that have died and the most recent one that I'm confident will be dead by the morning, it's been reading between 2.8 and 3 since application and is currently reading 3 while the finger prick said 7.6.

This is more than useless. Do those of you using 2+s have better results? As I'm getting such useless and possibly damaging info I'm seriously thinking of just giving up on them.

Reading this at1.25 am as my husbands alarm on his libre gone off for the third time tonight!! Keeps saying 3.8 and lower but finger prick test is 11.2 !! Seriously thinking of ripping it off and chucking it out the window as had 30 minutes sleep ! 2 days left on the sensor but it has been giving false readings from about day 5 ! So frustrating

 

[helli]

Reading this at1.25 am as my husbands alarm on his libre gone off for the third time tonight!! Keeps saying 3.8 and lower but finger prick test is 11.2 !! Seriously thinking of ripping it off and chucking it out the window as had 30 minutes sleep ! 2 days left on the sensor but it has been giving false readings from about day 5 ! So frustrating

Low alarms going off at night sounds like compression lows (false lows die to pressure applied to the sensor blocking the flow of interstitial fluid.
This is more of an issue with placement than a faulty CGM

 

[Proud to be erratic]

Reading this at1.25 am as my husbands alarm on his libre gone off for the third time tonight!! Keeps saying 3.8 and lower but finger prick test is 11.2 !! Seriously thinking of ripping it off and chucking it out the window as had 30 minutes sleep ! 2 days left on the sensor but it has been giving false readings from about day 5 ! So frustrating

If your husband's finger prick reading is consistently showing 11, when Libre is saying under 4 (and you have confidence that his finger was clean!) then turn the alarm off and take stock in the morning! That could include requesting Abbott to provide a replacement sensor, particularly if that significant difference exists in the morning - reinforcing that the sensor is not fit for purpose.

For some reassurance, while 11+ is not ideal, it's a long way from very bad.

 

[rebrascora]

As @helli says, CGMs can suffer from "compression lows" ... False low readings from applying constant and prolonged pressure to the sensor, such as lying on it in your sleep. I find in warmer weather I toss and turn a lot more in my sleep and compression lows are more likely to happen although I have developed techniques to mostly prevent them. Being aware that they can happen is part of resolving the problem and finding a location on your arm where they are less likely to happen, or I have developed a sleeping position with my other hand under the sensor arm elbow to just lift the arm up off the mattress a bit when lying on that side.
If it continues to read low during the day too, then it is likely that the sensor is coming loose and/or the filament has been disturbed. If this is the case then you need to report it to customer care at Abbott and they should send you a replacement.

 

[Proud to be erratic]

Good morning @casand2011. I'm thinking that you and your husband did finally get some unbroken sleep. Do let us know how he got on and whether he decided to change his sensor for a new one.

This thread is about unreliable Libre 2s. While there are more than a few people experiencing sensor difficulties it might help (slightly) to know there are many more people who are not having undue sensor difficulties. Naturally, we tend to not hear about those folk, who have no sensor concerns.

Your husband has had a rough introduction to his T1, with what must have felt like dreadful GP support. That won't have helped his feeling of vulnerability after his life changing diagnosis.

You had a thread at the start of May (High levels). I remarked last night that a BG of 11 is not ideal, but wanted to just expand on that comment a little. The general guidance is that for those of us who are totally insulin dependent we are aiming to stay above 4 and below 10 mmol/L. These 2 numbers are officially known as Time in Range (TIR). They are targets for guidance: Internationally agreed criteria for Diabetes. In UK achieving 70% TIR is considered excellent. We don't (and shouldn't) strive to achieve 100% TIR. In that context around 11 mmol/L is slightly higher than desirable, but still absolutely fine. Particularly for someone new to T1, who is learning how to manage their diabetes with the newly diagnosed knowledge that their own natural insulin production is now chronically (=permanently) impaired. Preventing ourselves from going too high is the main objective and we need extraneous insulin to help with that goal.

A potential unwanted consequence is the risk of going too low - by having more insulin on board than our blood glucose level needs. If one's body has insulin on board, regardless of whether it is "home grown" or injected, insulin is insulin and our body will always use it. The same is true, regardless of whether injected insulin is basal (slow acting) or bolus (fast acting). Our body doesn't know that some clever science has made a molecule of one insulin travel more slowly than another. If it has reached our blood stream it is there and going to be used to transfer glucose out of our blood. So we spend a certain amount of time doing our best to not have too much insulin on board.

We talk of "4 is the floor". In practice the medically defined hypo level is 3.5 mmol/L; 4 builds in an initial small margin of safety. So your husband has this constant juggle of trying to maintain his BG within certain boundaries. It isn't easy. But there are plenty of us doing it satisfactorily, alive and well. We have practiced trial and learning. One book that I found really useful after my abrupt introduction to insulin dependency is "Think Like a Pancreas" by Gary Scheiner.

It took me many months to recover from major surgery, get through chemotherapy and then stop feeling sorry for myself. With a refreshed mindset I made "Managing My Diabetes = My Responsibility" and stopped waiting for the Health Care Professionals (HCPs) to neglect to tell me how to cope. From that point on it's been onwards and BG downwards; plenty of hassles and challenges, plenty of minor frustrations, plenty of needing to understand plus learning and plenty of successes. The successes bring a great "feel good" component: "I can do this!" This forum has filled in so many gaps, it is impossible to quantify the excellence of help that others have offered me over the last 4+ years. Do try to encourage your husband to explore and sensibly experiment and thus to get on with managing in his new world of T1.

Meanwhile how are things today?

 

[Merluza]

Personally, in your position, I would try again. I am aware that you have been managing your BG for over 40 yrs, so for you CGM doesn't feel so beneficial as it was for myself.

I spent my first 12 months without CGM and finger pricking only. My BG management was really poor. Once I was given Libre 2, almost instantly my D management improved.

DESPITE my Libre 2 being very inaccurate and unreliable. It transpired that my body and Libre 2 were woefully incompatible; I had over 50% Libre 2 failures during the next 12 months. HOWEVER, I quite quickly learned to compensate or mitigate for my Libre inaccuracy and unreliability; whatever the numbers were the BG trends were identifiable, reliable and easily readable with the displayed graph. I couldn't trust any Libre reading for dosing, particularly corrections. But I could anticipate BG falls and prevent hypos, thanks to CGM alarms; also I could see BG rises, finger prick and then make informed bolus correction decisions. Consequently I quite quickly got off the Diabetes roller coaster and achieved a reasonable TIR (within my own appreciation and recognition that the numbers were often not guaranteed as being correct, thus in range was questionable).

There was certainly CGM stress from the uncertainty over accuracy of displayed numbers and stress from sensor failures. But I was seeing reduced BG variability with smoother BG graphs, week after week, thanks to not having to wait for hypo symptoms before needing hypo treatment and thanks to more timely corrections reducing serious hypers to minimal. I couldn't get that feel for my BG management from fps alone.

The NICE Guidance Note (NG17) revise in spring '22 recognised that some people were not compatible with a particular make of CGM and made it very possible to request a change. I took advantage of this new enlightened stance by NICE to move from Libre 2 to the original Dexcom One - now superseded by the Dexcom One+. This provided an immediate improvement in reliability and accuracy. As an experiment I self-funded Dexcom's G7 and found that to be very much better for me. Fortunately my Hospital recognised how much better I was doing with G7 and took over that funding. That was a financial relief. If Libre 2 continues to be inaccurate for you, then perhaps consider trying the Dex One+ - which is a no-cost process for NHS funding and firmly within the gift of a GP to write that script amendment. In practice each GP Surgery in-house Pharmacist, who advises each Practice on the rules and regs of prescribing, will know a switch from Libre to Dex One+ is cost neutral and will probably implement the change without resistance.

This year I can fairly claim I've had no serious hypos and less than 5 very minor drifts into hypo territory. Even though my Diabetes is very brittle and I can crash extremely quickly. I make full use of the excellent G7 Alerts (equivalent to Libre's Alarms) and if I go much above 12 or 13 it is invariably my fault for not responding to rising BG Alerts; my complacency! I will find out next month if this gets confirmed by a reduced HbA1c. Hence my view is do try again @Merluza.

Thank you that was very helpful.

 

[PhoebeC]

You had a thread at the start of May (High levels). I remarked last night that a BG of 11 is not ideal, but wanted to just expand on that comment a little. The general guidance is that for those of us who are totally insulin dependent we are aiming to stay above 4 and below 10 mmol/L. These 2 numbers are officially known as Time in Range (TIR). They are targets for guidance: Internationally agreed criteria for Diabetes. In UK achieving 70% TIR is considered excellent. We don't (and shouldn't) strive to achieve 100% TIR. In that context around 11 mmol/L is slightly higher than desirable, but still absolutely fine. Particularly for someone new to T1, who is learning how to manage their diabetes with the newly diagnosed knowledge that their own natural insulin production is now chronically (=permanently) impaired. Preventing ourselves from going too high is the main objective and we need extraneous insulin to help with that goal.

Yes, I will add that even nearly 20 years on I don't do anything if I am at 11-12.
13 I may do something, but less than that me personally I don't take action.
It's not in range but I would rather not have extra insulin and risk dropping, this happens less for me now HCL, the pump works out and can give those tiny tweaks of insulin. I have my high alarm at 13.4 which I know is higher than most people but it works for me. And that's what is about, learning what works for him, adjusting and not trying to fix it all, small goals, notice the patterns and trends, they say generally say 3 days, but sometimes this is too long with alarms and feeling unwell.
Not looking at the big picture sometimes is best for wellbeing.