Getting very angry with Abbott over Libre 2.

[Proud to be erratic]

I know it's about libre 2 but I was simlarping pointed out that it's compaters were worst in that respect of the reason for yellow card(as I underrstood that it was submitted simlpy because it wasn't compatible with there phone). If you have libre 2 on presentation you don't have pay for a reader(as many have said including me when I was on the libre they were given a reader). It just seemed a little bit harsh to me(and I had many problems with the libre mainly they never last which was why I had to stop) but I'm happy to agree to disagree and I respect your point of view 🙂.

Thanks @rayray119. I appreciate where you were coming from. But as Users there really seems to be no other way to flag up Libre 2 issues, other than raising a Yellow Card. If appraisal of any one Yellow Card leads to a decision that the Yellow Card is inappropriate, ill-judged or just not relevant - so be it. But at least something was documented and potentially visible to the NHS.

But someone like yourself has given up on CGM tech because it didn't work with your body and at that time you didn't have any alternative. So perhaps, and only perhaps, a few Yellow Cards then might have attracted attention to it not working well enough for you. That all leads into a bigger picture of frustration and anxiety for you, with that subsequent medical consequence for you and managing your D.

Now, since April 2022, there are 3 alternatives to Libre 2 at no extra cost, it might be worth while for you to explore getting one of those alternatives. That said, right now because of the change from lots of small CCGs to huge regional Integrated Care System (ICS) there are lots of problems within the bureaucracy of these new ICSs and despite the seemingly good intentions in my particular ICS my GP still wasn't allowed to write a prescription for Dexcom One and my local Pharmacy couldn't actually fulfil any prescription since the Pharmacy suppliers had no contract with Dexcom - as at last week. No doubt that will eventually get resolved, but no-one seems to know exactly when! I'm still totally convinced that even an unreliable and inaccurate CGM is better than no CGM. MY libre 2 is further improved by having the Diabox app, turning it into real time CGM, with better data presentation and frequently working when Libre 2 is displaying the error message to try again in 10 mins.

 

[rebrascora]

How do people find sleeping with them? I also read that if you sleep on them the pressure can trigger false low readings

I seem to have learned not to lie on it, but yes, if you lie fully on the sensor, it can cause a compression low and may falsely activate the low alarm.

 

[Robin]

How do people find sleeping with them? I also read that if you sleep on them the pressure can trigger false low readings

I get V shaped dips in mine overnight occasionally, it seems to happen more when I’ve got the sensor in my right arm, and when I’m slightly dehydrated.

 

[PattiEvans]

FWIW I installed their latest update (2.8.4) and it didn't fix the issues I was having with my phone. So I uninstalled it and reverted to 2.5.3 which was the last known working one. It now works fine. I also have JugGluco installed though I absolutely hate the interface on it and don't really look at it.

As to compression lows, I do not get them as I wear the sensors on the front of my thighs. They are extraordinarily accurate for me there.

 

[Proud to be erratic]

@UnexpectedDiagnosis :The "up to 24 hrs for allowing Libre 2 to bed in", before activating it, doesn't extend the 14 day operational period. It just seems, for some people, to make it more accurate when first activated. There is also a sense that the sensor could be more reliable and more likely to last the full 14 days - but that can not be proved! It's just a perception and at least leaves me feeling I've given each sensor it's best chance; not overly rational.Un

How do people find sleeping with them? I also read that if you sleep on them the pressure can trigger false low readings

I rarely sleep on my sensors. I sleep on my right side, rarely on my left and I always wear the sensor on my left arm. When I have caused a false compression low with Libre, it bounces back quite quickly. If that false low is brief, ie an alert wakes me straightaway, then the reading can be on my LibreLink logbook, but not displayed on the graph - or shows up as an isolated low point on the graph.

For a few months during lockdown and when not needing to drive frequently, I wore my sensors on my chest. This worked well enough and certainly did not worsen my failure rate. But for the DVLA Libre 2 has to be worn in accordance with the manufacturer's instructions - hence on the arm. I was happy to finger prick when I less frequently needed to drive and the sensor was in a better place for me.

 

[rayray119]

Thanks @rayray119

Now, since April 2022, there are 3 alternatives to Libre 2 at no extra cost, it might be worth while for you to explore getting one of those alternatives. That said, right now because of the change from lots of small CCGs to huge regional Integrated Care System (ICS) there are lots of problems within the bureaucracy of these new ICSs and despite the seemingly good intentions in my particular ICS my GP still wasn't allowed to write a prescription for Dexcom One and my local Pharmacy couldn't actually fulfil any prescription since the Pharmacy suppliers had no contract with Dexcom - as at last week. No doubt that will eventually get resolved, but no-one seems to know exactly when! I'm still totally convinced that even an unreliable and inaccurate CGM is better than no CGM. MY libre 2 is further improved by having the Diabox app, turning it into real time CGM, with better data presentation and frequently working when Libre 2 is displaying the error message to try again in 10 mins.
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[/QUOTE]
Yeah nice guidelines unfortunately still haven't been impited the nice guidelines aparrtely dexcom one will be available "soon" what soon actually means I don't know they did put a note on it of my last meeting to say I wanted one for when although my phone isn't compatible so I would a reciver and unsure if that willed been included on NHS prescription

 

[rayray119]

Aslo it wasn't inaccuracy that was the problem it's was the them sporting working after about 2 to 4 days all the day

 

[mark king]

Apart from the occasional wait 10 min then try again error I have no problems. I get the full 14 days and run the reader as my primary info source and use my Samsung Mob as extra cover. It is only the reader that gives me my alarms my phone won't sound off unless I start it first but I prefer to start my reader first.
It sleeps on my bedside table and will wake me if I go HI >15 or LO .9.

 

[rayray119]

I edited this several times for my reply not to be in blue box but it still is

 

[Proud to be erratic]

I edited this several times for my reply not to be in blue box but it still is

My Consultant wasn't clear about the Receiver situation when I saw him 3 weeks ago and undertook to find out. I have not heard back, but will let the forum know once I know. They can certainly be purchased, c.£60 for Dexcom One. The quandary is I'd like to know that Dexcom One will definitely provide me with an improvement, before I'd self fund a Receiver. I potentially can borrow a compatible phone for the short term, so I now just need replacement sensors to go with my 90 day transmitter!

 

[Tdm]

My Consultant wasn't clear about the Receiver situation when I saw him 3 weeks ago and undertook to find out. I have not heard back, but will let the forum know once I know. They can certainly be purchased, c.£60 for Dexcom One. The quandary is I'd like to know that Dexcom One will definitely provide me with an improvement, before I'd self fund a Receiver. I potentially can borrow a compatible phone for the short term, so I now just need replacement sensors to go with my 90 day transmitter!

I got a reciever for my g6 from nhs. I have a non compatible phone i use in preference, with a 'hacked' version of the dexcom app...its called 'build your own dexcom app' and if you do a google search you can download it from a reddit thread. Its been fine for me but i wanted a reviever as a back up becuse it isn't official and if dexcom change something it could temp/ permently stop working. When i get new phone i will try to get a compatible one.
But if you want a stopgap before shelling out for a receiver the 'build your own' is worth a try...and its the same as the official app, they just took out the checks that dexcom make to ensure its one they tested it against

 

[rayray119]

My Consultant wasn't clear about the Receiver situation when I saw him 3 weeks ago and undertook to find out. I have not heard back, but will let the forum know once I know. They can certainly be purchased, c.£60 for Dexcom One. The quandary is I'd like to know that Dexcom One will definitely provide me with an improvement, before I'd self fund a Receiver. I potentially can borrow a compatible phone for the short term, so I now just need replacement sensors to go with my 90 day transmitter!

yes but remeber there people that generally can't afford a receiver even if its only(as i understand 3rd party apps aren;t withen rules(i;m not criticising anyone for doing but my principles(i've always been like that will not allow to do that)