Libre - NIGHTMARE!!!!

Vix85 said:

Is anyone else seriously struggling with the libre constantly failing, giving sensor error messages and not working when you REALLY need it to?! It’s making me SO anxious, I find it so unreliable lately, never used to be this bad!

Anyone else?!

Click to expand...

Hi Vix85

I too have had similar experience. It does seem worse recently. Not sure if the changes made to Libre view have anything to do with it.

I am currentry speaking with the DSN Team locally about moving Dexcom One.

Libre 2 is nightmare!! I’m now paying for Dexcom 7 much better
Tried the Dexcom one but you cannot make any notes (insulin,food,exercise) I’m on a pump so no good for me

I am always very sad to read when people feel let down by Libre.
Like all CGMs it has its quirks. I suspect we hear more about Libre quirks because it is the most common CGM. For example, I have also tried Dexcom and found it far less accurate which is further proof we are all different.

I am not belittling the bad experience many have with Libre. I know it is real as it can be temperamental for some people.

Unfortunately, human nature dictates we are more vocal when something is bad. So there are far more reports of Libre problems than Libre successes.

i would like to make the forum more balanced. I used Libre for about 4 years with little problems. I started using a different CGM this year because it works with my pump. For the last fortnight, I had to revert to the Libre. Despite the need to swipe, it has been good. Highs are exaggerated but I expect that.
Libre is great for the silent majority. But incredibly frustrating for the minority.

I 2nd @In Response . I have only been using Libre 2 for less then 6 months and have encountered very little problems.

My experience with Libre 2 has been 99% positive. In the year I've had the L2 I have had 2 sensor failures in a 24 hour period, but Abbott sent me prepaid envelopes to return them and they replaced the sensors too.

I do not have the Libre meter, so have to scan with my phone (Samsung S20+). I have found if I do not hold my phone perfectly over the sensor it will give me the error message. Sometimes it takes me 3 attempts, but it does eventually scan.

In Response said:

I am always very sad to read when people feel let down by Libre.
Like all CGMs it has its quirks. I suspect we hear more about Libre quirks because it is the most common CGM. For example, I have also tried Dexcom and found it far less accurate which is further proof we are all different.

I am not belittling the bad experience many have with Libre. I know it is real as it can be temperamental for some people.

Unfortunately, human nature dictates we are more vocal when something is bad. So there are far more reports of Libre problems than Libre successes.

i would like to make the forum more balanced. I used Libre for about 4 years with little problems. I started using a different CGM this year because it works with my pump. For the last fortnight, I had to revert to the Libre. Despite the need to swipe, it has been good. Highs are exaggerated but I expect that.
Libre is great for the silent majority. But incredibly frustrating for the minority.

Click to expand...

The only issue I have is that it loses my alarm settings and doesn't go off when it should do.

Hi,

I feel there are 2 sides to the “story,” there is the sensor & there is the device used to read it?
There is a fair bit of data that can be transmitted with a scan, some phones could be in the middle of doing “something” else whilst this is going on?
NFC payment security could be one issue with a phone not talking to a sensor? As one issue that could arise, off the top of my head. (In a bid to stop it getting “skimmed?)

Oddly, I use tha third party app for a “CGM experience” on my old galaxy note 9 phone. I find it will alarm with a customised sound if in the other room. The Bluetooth signal on these sensors to my mind is pretty good.

Vix85 said:

Is anyone else seriously struggling with the libre constantly failing, giving sensor error messages and not working when you REALLY need it to?! It’s making me SO anxious, I find it so unreliable lately, never used to be this bad!

Anyone else?!

Click to expand...

Yes 100%.

Never fails to let you down.

I scan with the reader as well so it’s not down to a third party device.

I’m moving to dexcom 1 as soon as I can get to my gps.

I attached a new sensor last night and today it has been giving me readings in the low 3's, high 2's where finger pricks have ranged between 4.9 (when I woke), 9.6 (after breakfast) and then 5's and 6's. I've used many test strips today. I just restarted my phone (Samsung something) and it's reading much closer to the finger prick now. I don't know if it was the restart that fixed it or just a coincidence but, touch wood, I think it's settled down now

I agree in large measure with what @inResponse has said. I am a die hard Freestyle Libre person. It works really well with my body chemistry (when I compare it to a bloodstick test). I prefer it to the Dexcom, not least because I do not want to have to try to dispose of the significant additional product and packaging waste that the Dexcom product seems to generate.

That said, I assume in the United Kingdom that the official regulator of medical devices, the Medicines and Healthcare Regulatory Agency has authorised and licensed the Freestyle Libre 2 system on the basis that it will, when applied and used normally in accordance with the manufacturer's use instructions, provide in normal use low and/or high glucose alarms when the Libre 2 sensor is used with the Librelink app on a compatible mobile phone.

If it isn't doing so; if people are finding that because of either too many faulty Libre 2 sensors and/or the Librelink app isn't functioning normally because of updates; and you are finding that self-diagnosing or treating one's hypoglycaemia or hyperglycaemia is being delayed, then everyone using the product in the UK ought to give serious consideration about whether they should report their experiences using the MHRA's Yellow Card incident.

This past week I had four (4) Libre 2 sensors - one after the other - fail to provide high and low glucose alarms on my Freestyle Libre 2 Reader over 96 hours. Yes, perhaps I was unlucky and received a batch of sensors that were not functioning as they should. However, that level of failure shouldn't be acceptable. Ever.

At the moment I cannot use the Freestyle Librelink app on my smartphone to get high and low glucose alarms following updates to the Librelink app without doing lots of additional things (including uninstalling and reinstalling Librelink) and switching my phone on and off. Even then this only fixes not receiving alarms temporarily. There's a limit to how often I am prepared to do that. Abbott need to fix the issue.

I'm aware updates Abbott made to the Librelink app coincide with my mobile's operating system being updated by the manufacturer of my mobile. But I've paid for my mobile on the basis it will receive period updates. Those updates make my phone more stable and less prone to be hacked.

And I'm not prepared to use third party apps, none of which have been submitted to an official, government-backed, medical devices regulator and scrutinised, authorised and licensed by that regulator as clinically safe and fit for purpose, nor third party apps which have not been authorised officially by the manufacturer of the Freestyle Libre system.

I have already read elsewhere more than one account from others who say they relied on the Librelink app to give an alarm when their glucose was going low so they could double check before it went too low and had a fighting chance to do something about it. Following software updates they received no low alarms. In one instance someone said they woke up to paramedics treating them for severe hypoglycaemia (with all the implications that has for keeping one's driver's licence IF one drives a car in the UK).

The MHRA is there to ensure medical devices (which includes sensors and computer software) UK patients use are safe and work for patients as they are supposed to work in accordance with the licence the MHRA has given the manufacturer. UK diabetics shouldn't be timid in reporting concerns to the MHRA. The MHRA is there to try and keep us safe.

Vix85 said:

Is anyone else seriously struggling with the libre constantly failing, giving sensor error messages and not working when you REALLY need it to?! It’s making me SO anxious, I find it so unreliable lately, never used to be this bad!

Anyone else?!

Click to expand...

This is so relatable man. I feel ur pain !! When I'm having a bloody hypo the stupid sensor wants to say sensor error and wait 10 mins and I'm suffering with my hypo symptoms and now it doesn't wanna work . The only best advice I can give at the time when this happens, go to your blood glucose kit cus one it will always be accurate and first than the sensor as there is a time difference forgot what the numbers were and it will match with how you feel and your symptoms . Yeah it's long , annoying and painful to the point I had so many hypos in a day and a part of my finger went a bit black but that little blood sucker machine is what helps us manage

I spoke too soon yesterday. The sensor seemed to work for about an hour after I restarted my phone but then went all wacky again. At 6AM this morning it stopped working completely until 8 o'clock (cannot read blood glucose. try again in 10 mins, and there is a gap in the graph for those two hours). It seems to be working now... well it's going up after eating and not going down after jelly beans like it did yesterday

plantae said:

I spoke too soon yesterday. The sensor seemed to work for about an hour after I restarted my phone but then went all wacky again. At 6AM this morning it stopped working completely until 8 o'clock (cannot read blood glucose. try again in 10 mins, and there is a gap in the graph for those two hours). It seems to be working now... well it's going up after eating and not going down after jelly beans like it did yesterday

Click to expand...

I'm sure this has been mentioned before in other threads, but it is worth saying again.

My understanding is that it is a well known flaw with intermittent or continuous glucose monitors that when one's glucose is changing - up or down - so rapidly, they will for a short period (usually in the Libre's case 10 minutes) have difficulty working out what your reading is.

If you are ever unsure, but want or need to check, I'm afraid only a blood fingerstick test will do the job.

If the flash or continuous glucose montior takes more than 10 minutes, then you might want to contact customer services, as there may be something wrong with the sensor, or the software or the reader you are using to obtain the glucose number.

I’m struggling with the glue I’m getting awful red itching lumps and alarms have never worked, it works for about 2 days then I’m always like 5 to 8 out which is quite dangerous, I’m wondering if dexcom would not give me rash

@Liftupjoe Have you tried Cavilon spray, or putting something like Tegaderm on your arm before applying the sensor?

h884 said:

Hi Vix85

I too have had similar experience. It does seem worse recently. Not sure if the changes made to Libre view have anything to do with it.

I am currentry speaking with the DSN Team locally about moving Dexcom One.

Click to expand...

I have been using the Libre 2 for almost a year now, using it has made a huge difference to my awareness and therefore control. I was having many problems with it not alarming when it should have been, I looked at other peoples experiences and comments on this forum and have now found that if I turn my phone off and on again (not just restarting) each day the alarms do work reliably. I have only had one sensor fail early and contacted Abbot and had it replaced so all in all, I would recommend sticking with it.

I’ve been using libre 2 for 12 months now. Had a handful of faulty ones along the way but otherwise I’ve been doing really well… until recently. Had another faulty sensor which failed after just 4 readings while recently away for Christmas so I replaced it for a new one, this only gave me 1 reading then failed. On returning home I applied a 3rd sensor which I could not even scan on my phone to activate it! Is it another faulty sensor from same batch or is it a problem with my iPhone SE? I’ve taken off and reinstalled the LibreLink app a couple of times but still nothing. I agree with other comments on how frustrating this is when you suddenly lose something you very much rely on. Anybody else had this problem? I’ve rang customer services and all they offered was sending me out 2 replacement sensors.