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LIBRE IS STILL A WORK IN PROGRESS

L

LongtermIDD

BANNED
Messages
15
Type of diabetes
Type 1
Treatment type
Insulin
See attached. An all too common an occurrence.
 

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Jaylee said:
Hi,

This is hard to make out, other than the screen. Is this on the scanner?
Click to expand...
Sorry for poor quality pic.
It reads as follows:

"GLUCOSE READING IS UNAVAILABLE. TRY (note, lack of the word, please!) SCANNING AGAIN IN 10 MINUTES"

For me and hundreds (if not thousands) of others this is an all too common message that appears on the Libre meter. Often the same message is repeated. It occurs with almost every sensor, in particular when bs levels are below 5, i.e. potentially the most critical time for a bs device to function effectively.

Who would pay a full price for a monitoring device which is repeatedly faulty? Sadly the NHS does, but as it doesn't directly cost patients then few people complain. Seems like the manufacturer may be laughing all the way to the bank and the poor UK tax payer may well be being ripped off. I agree that Libre is a step in the right direction, and is not perfect. However, I think the true degree of imperfection is understated in particular for Libre users who seek to keep good and tight BS controls.

FYI only, I am glad to support my NHS Diabetic Consultant in raising the above concerning matters with NHS England.
 
LongtermIDD said:
Sorry for poor quality pic.
It reads as follows:

"GLUCOSE READING IS UNAVAILABLE. TRY (note, lack of the word, please!) SCANNING AGAIN IN 10 MINUTES"

For me and hundreds (if not thousands) of others this is an all too common message that appears on the Libre meter. Often the same message is repeated. It occurs with almost every sensor, in particular when bs levels are below 5, i.e. potentially the most critical time for a bs device to function effectively.

Who would pay a full price for a monitoring device which is repeatedly faulty? Sadly the NHS does, but as it doesn't directly cost patients then few people complain. Seems like the manufacturer may be laughing all the way to the bank and the poor UK tax payer may well be being ripped off. I agree that Libre is a step in the right direction, and is not perfect. However, I think the true degree of imperfection is understated in particular for Libre users who seek to keep good and tight BS controls.

FYI only, I am glad to support my NHS Diabetic Consultant in raising the above concerning matters with NHS England.
Click to expand...
Hi,
Thanks.
I could read the text on the image. Not sure what device you are using to scan?

What action are you taking to support your consultant on this issue? It seems like a mammoth task..
 
LongtermIDD said:
Who would pay a full price for a monitoring device which is repeatedly faulty?
Click to expand...
I would. I have self funded my Libres for years before I got them funded, and so have many others.
I'm not rich, I ditched my television and my newspaper, and I kept my house very cold in winter to help fund this.
Very much worth it, I keep a tight range and I couldn't do it without the Libre. If the sensor has an error, there are still fingerpricks to use.
 
For one I don't use Librelink or a reader. I use Juggluco. But remember those readings. I used to get them most of the time when consuming high carb items. Or after/during exercise. When both give rapidly changing values. I personally find Libre2 as near perfect. If you learn how to use it correctly.
 
Me me and me. I occasionally get a similar message but rarely now I use my I phone. I just close the page, reopen and it usually scans. Still quicker than a blood test rigmarole.
 
Jaylee said:
Hi,
Thanks.
I could read the text on the image. Not sure what device you are using to scan?

What action are you taking to support your consultant on this issue? It seems like a mammoth task..
Click to expand...
Mammoth task. It isn't. Will maybe take a couple of hours. If my honest and constructive input does some good then I feel it will be time very well spent.
 
Antje77 said:
I would. I have self funded my Libres for years before I got them funded, and so have many others.
I'm not rich, I ditched my television and my newspaper, and I kept my house very cold in winter to help fund this.
Very much worth it, I keep a tight range and I couldn't do it without the Libre. If the sensor has an error, there are still fingerpricks to use.
Click to expand...
That's fine. I'm sure the Libre manufacturer is more than happy to learn of your stance. As a UK tax payer I would, however, beg to differ. And yes, it has now dawned on me that the good old fashioned finger prickers are still by far the most reliable in particular for the tens of thousands of well controlled Type1's.
 
Ipodlistener said:
For one I don't use Librelink or a reader. I use Juggluco. But remember those readings. I used to get them most of the time when consuming high carb items. Or after/during exercise. When both give rapidly changing values. I personally find Libre2 as near perfect. If you learn how to use it correctly.
Click to expand...
Thank you for seeking to inform me that I don't know how to use my Libre properly. Are you serious? I look forward to sharing your thoughts with my Diabetes team.

Anyhow, Juggluco (sp?) may be worth knowing about, but is it actually recommended for use by the NHS in conjunction with Libre?
 
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LongtermIDD said:
Thank you for seeking to inform me that I don't know how to use my Libre properly. Are you serious? I look forward to sharing your thoughts with my Diabetes team.

Anyhow, Juggluco (sp?) may be worth knowing about, but is it actually recommended for use by the NHS in conjunction with Libre?
Click to expand...
Had a talk with my DSN about Juggluco only a couple of weeks ago. Don't think they care. It's all about TIR which helps lower A1C. I am pretty new to diabetes. So perhaps that why carb counting. Eating high carb items at the right time after insulin dose come easy to me. Sorry if it seemed I was putting you down. I eat what I want. But have learnt when is right to do so. Because I've found I can't just wind it in like before diabetes. I'm not boosting when I say I've had a 5.6 A1C for 18 months. Libre2 helped massively to achieve that. Juggluco means you get a reading every minute. Not every 15 minutes. Making it more like a CGM. Even when using Librelink. I was scanning 30-40 times a day. As I walk 7-8 miles a day. 5 days a week. Too much information is never enough. I think I've been incredibly lucky to have diabetes tech almost from the start of my journey.
 
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Ipodlistener said:
Had a talk with my DSN about Juggluco only a couple of weeks ago. Don't think they care. It's all about TIR which helps lower A1C. I am pretty new to diabetes. So perhaps that why carb counting. Eating high carb items at the right time after insulin dose come easy to me. Sorry if it seemed I was putting you down. I eat what I want. But have learnt when is right to do so. Because I've found I can't just wind it in like before diabetes. I'm not boosting when I say I've had a 5.6 A1C for 18 months. Libre2 helped massively to achieve that. Juggluco means you get a reading every minute. Not every 15 minutes. Making it more like a CGM
Click to expand...
Hi,
That’s pretty much my experience.
They don’t (HCPs.) understand my set up. All my DSNs want to do is snatch my meter out of my hand & upload data via usb. My endo is a bit more switched on.
I used to use xDrip. (Glimp, prior.) Then found Diabox with the libre 2, but I use it now as an intermediate data gatherer sending to xDrip on my recent phone.
I did try Juggluco during early development. But it wasn’t for me.

I still use librelink for nursey. It also registers the sensor with the Abbott account (libreview.) should there be an issue with the sensor..? Lol, I feel like a “tracked driver.”
In the last 5 years of use. I’ve never needed to contact them.

But to be honest. Back in the “day” I never felt all the logging of pee tests in an exercise book was viewed with much attention to detail, either..
 
Jaylee said:
Hi,
That’s pretty much my experience.
They don’t (HCPs.) understand my set up. All my DSNs want to do is snatch my meter out of my hand & upload data via usb. My endo is a bit more switched on.
I used to use xDrip. (Glimp, prior.) Then found Diabox with the libre 2, but I use it now as an intermediate data gatherer sending to xDrip on my recent phone.
I did try Juggluco during early development. But it wasn’t for me.

I still use librelink for nursey. It also registers the sensor with the Abbott account (libreview.) should there be an issue with the sensor..? Lol, I feel like a “tracked driver.”
In the last 5 years of use. I’ve never needed to contact them.

But to be honest. Back in the “day” I never felt all the logging of pee tests in an exercise book was viewed with much attention to detail, either..
Click to expand...
I didn't mean they don't care about my health. I meant they don't care. If you've found a better way of using something to get a better outcome for my health. Been using Juggluco since December. Thought about giving up on it. But there's been so many updates which have made it good. I'd suggest having another go with it. Does take a little setting up initially thou.
 
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Ipodlistener said:
I didn't mean they don't care about my health. I meant they don't care. If you've found a better way of using something to get a better outcome for my health. Been using Juggluco since December. Thought about giving up on it. But there's been so many updates which have made it good. I'd suggest having another go with it. Does take a little setting up initially thou.
Click to expand...
Neither did I. It’s a level of understanding, with my lot.. It’s been a fair while since I tried Juggluco out. I may well take a second look.
 
Jaylee said:
Neither did I. It’s a level of understanding, with my lot.. It’s been a fair while since I tried Juggluco out. I may well take a second look.
Click to expand...
If you do. Makesure to setup send amounts when adding Libreview user and password. It'll send all data to it then. It'll speak your values now. Display value whilst using your phone as a sat nav too. I have it on phone, watch and mirror on Tablet. The creator gets back to any emails really quickly too.
 
Regarding the sensor. I have tried turning the alarm down as it is mega loud (so much so I turn it off at work and in public as everyone jumps when it sounds). Ive tried turning the sound down on my iPhone in my settings and the app settings but it doesn’t adjust the sound at all. During the night I have to put my phone under a thick pillow on the floor so it doesn’t frighten the life out of me and wake my partner. I’ve spoken to customer services at Libre but she said u can’t adjust the sound this is work in progress! However if anyone has managed to successfully turn the sound down it would be good to know. Also I agree with previous posts that the sensor will show the message that it can’t take a reading, try again in 10 mins, when my bs is going up or down sharply. That’s exactly when you need to know what your bs is so the tech needs to be improved greatly. It is a very good device though despite these two frustrating deficiencies.
 
I think the thing to remember here is that yes the libre may have issues but its not the only one with issues, and some people may have big issues with some where others wont

When I was using the Libre 1 I had very few problems with it at all - I got changed onto the Medtronic Guardian 3 to go with my pump just as the libre 2 was being rolled out (so I never got to try it), and my current one does also have issues some of time, they all do - a few weeks ago I went through 3 in one week - and they have a 2 hour warm up time instead of 1hr and need calibrating and if you don't calibrate it when it wants then it just stops reading til you do (which can be in the middle of the night - I have to start a new one in the morning if I want any hope to get any sleep without it wanting a calibration in the middle of the night on that first night).

I guess my main point is that yes whilst it still may be a 'work in progress' but for some of us has been a definite game changer and I wouldn't want to lose it (my hba1c before the libre was somewhere between high 50's and low 80's for a few decades - since the libre and my current one its been low 40's)
 
I love my libre 2 and loved my libre with miaw miaw attached......
I love the NHS for paying for it.
I didn't love countless finger prick test nor did i love weeing into a potty and testing my urine with a tablet that fizzed and changed colour.

The scan error fault only ever shows after my evening meal and i have worked out why this is....
This may well be peculiar to me ....

I have a physically active job and walk home from work.....sugar levels are dropping
I eat a v v large evening meal packed with carbs......sugar levels start to rise
Insulin taken to combat this......sugar levels start to drop again
Then retire to my workshop to do some cutting and doing and making nice......

No wonder the sensor is confused and thats why it goes "go away and leave me alone for 10 minutes whilst i try to makes sense of things you dolt" but its far too polite and says "scan error come back in 10 minutes"

Whilst this is light hearted i have been injecting myself for 50 years and don't expect 100 % accuracy for 100 % of the time.

My lovely libre 2 has helped me to a hba1c of 42 (6.0) and i am v happy with that.

Did i mention how i feel about my libre???

Good luck everyone

Tony
 
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