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Libre

Hi and welcome to the forum from me. Really sorry to hear your son is going through this at such a critical time and hope the college are able to make allowance.

Also want to pass on my thanks to your husband as I absolutely love Libre and it has revolutionised my diabetes management. Yes, it isn't perfect and some of the issues that would make it better have been highlighted.
Personally I use the reader rather than the phone app. and find that my experience with it is much more reliable than using the app. I tried the phone app twice for 3 months each and went back to the dedicated reader each time with relief. The reader doesn't have the full CGM capability so you have to scan the sensor with it to get readings but I don't find that a problem and the reader is nice and small compared to a phone so easily fits in a pocket and sits comfortably in even the smallest hands.

I agree that having more alarm options would be good as I have treated a low (not hypo) when out on a walk and then not come up above the alarm threshold and then dropped lower, ending up hypo with no further warning other than my body telling me I am hypo.

We have a thread on the forum which members collaborated on from our experiences to highlight the quirks and limitations of Libre which you, your son and your husband might find useful to read. It was obviously compiled to help other users obviously. I will link it below in case you haven't already been pointed to that thread.
H

Thread 'CGM limitations and precautions'

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

MarinaDE said:
My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.
Click to expand...
If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...
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I hope your husband gets some job satisfaction from your son benefitting from this fantastic device. It is easy to be critical of the things that are not perfect with it but we easily forget that finger pricking was inconvenient and like looking through a hole in a wall at our diabetes a few times a day, whereas Libre gives us a 24/7 panoramic view and has been a game changer for most of us.
 
There are a few changes which I'd like in the Libre application:
1) an optonal setting which means that an "injection" of 1 unit or 2 units gets automatically treated as a Flow Check, that is, not actually injected. It's deeply tedious at every injection to go through the procedure of ignoring one of the two readings.
2) a means by which the user can calibrate the Libre readings - mine are always about 1-to-2 mmol/L too low when compared with finger-prick results. [For this reason I make no use of the higher alarm, and very limited use of the lower alarm, because I know that even at 3.2 mmol/L I am not yet hypo!]

And if he's got any influence on the sensor hardware itself -
a) enabling the sensor to be worn in the bath for at least an hour without it giving up and having to be replaced! (What's the point of the hole in the centre of the sensor, anyway?!)
 
John Gray said:
enabling the sensor to be worn in the bath for at least an hour without it giving up and having to be replaced! (What's the point of the hole in the centre of the sensor, anyway?
Click to expand...
You can already bath for an hour without replacing the sensor, it’s just only tested for 30 minutes at a time. The hole is to allow the insertion needle to be removed.
 
Lucyr said:
You can already bath for an hour without replacing the sensor, it’s just only tested for 30 minutes at a time. The hole is to allow the insertion needle to be removed.
Click to expand...
According to Abbott, it is for ventilation.
 
I still use the reader, and I find it really annoying, when you really need a reading because you really don’t know what your levels are doing, and it comes up with 'Glucose reading unavailable, try again in ten minutes' and I have to faff around with a test strip (and it’s usually when my hands are filthy from gardening, or mucking out the pony).
I assume this is something to do with the algorithm getting confused and not being able to predict which way things are going, but that’s exactly the time when I need a reading! Can it not just give me (with a warning) the last reading it had? That would be better than nothing.
 
rebrascora said:
Hi and welcome to the forum from me. Really sorry to hear your son is going through this at such a critical time and hope the college are able to make allowance.

Also want to pass on my thanks to your husband as I absolutely love Libre and it has revolutionised my diabetes management. Yes, it isn't perfect and some of the issues that would make it better have been highlighted.
Personally I use the reader rather than the phone app. and find that my experience with it is much more reliable than using the app. I tried the phone app twice for 3 months each and went back to the dedicated reader each time with relief. The reader doesn't have the full CGM capability so you have to scan the sensor with it to get readings but I don't find that a problem and the reader is nice and small compared to a phone so easily fits in a pocket and sits comfortably in even the smallest hands.

I agree that having more alarm options would be good as I have treated a low (not hypo) when out on a walk and then not come up above the alarm threshold and then dropped lower, ending up hypo with no further warning other than my body telling me I am hypo.

We have a thread on the forum which members collaborated on from our experiences to highlight the quirks and limitations of Libre which you, your son and your husband might find useful to read. It was obviously compiled to help other users obviously. I will link it below in case you haven't already been pointed to that thread.
H

Thread 'CGM limitations and precautions'

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

MarinaDE said:
My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.
Click to expand...
If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...
  • Like
  • Star
  • Love

I hope your husband gets some job satisfaction from your son benefitting from this fantastic device. It is easy to be critical of the things that are not perfect with it but we easily forget that finger pricking was inconvenient and like looking through a hole in a wall at our diabetes a few times a day, whereas Libre gives us a 24/7 panoramic view and has been a game changer for most of us.
Click to expand...
Thank you I will read the thread.
 
Lucyr said:
You can already bath for an hour without replacing the sensor, it’s just only tested for 30 minutes at a time. The hole is to allow the insertion needle to be removed.
Click to expand...
Oh no I can't! I have had several sensors fail because of waterlogging...
 
Robin said:
According to Abbott, [the sensor hole]it is for ventilation.
Click to expand...
"Blocking the small hole in the middle of the sensor's upper surface with an over-bandage may cause moisture to be trapped within the sensor."

That really does not make much sense, since if the sensor is properly stuck to one's arm, there is no way the water can get in EXCEPT through the hole! Why is there any need for ventilation, anyway? I can only think of pressure equalisation...
 
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John Gray said:
"Blocking the small hole in the middle of the sensor's upper surface with an over-bandage may cause moisture to be trapped within the sensor."

That really does not make much sense, since if the sensor is properly stuck to one's arm, there is no way the water can get in EXCEPT through the hole! Why is there any need for ventilation, anyway?
Click to expand...
Because moisture is produced by the body all the time, in the form of sweat, I assume. At worst, you could brew up a nice fungal infection under there in warm humid conditions.
 
The underside of the sensor is actually ribbed to allow the skin to breath and sweat to vent through the centre hole. With the sensor being on the skin for 2 weeks it is important for skin health that it can breath.
 
HelenNicholas said:
Hello everyone. My son was diagnosed in DKA at the end of March. It's ironic as my husband's team designed the software for the Libre sensor. He has worked for Abbott for 28 years. It's all been a terrible shock. My son was sent home with laxatives, despite loosing 8kgs of weight, difficulty breathing and walking and terrible acid reflux and being sick and unable to eat. He was falling asleep all the time and developed a boil on his face.
He is sitting his finals at Oxford starting next week after a 4 year degree in Classics. It's going to be very hard for him.
If you have any feedback on Libre, please send it to me. My husband will be very interested to hear you feedback and help to improve all diabetes management. Thank you everyone. Helen
Click to expand...
Very sorry to hear about what your son has gone through.

When I was first diagnosed, a simple letter from one's diabetes consultant or GP confirming the diagnosis was enough to satisfy non-clinician third parties.

My wishlist items for the future of the Libre sensors are:

1. Introduce in the UK as soon as practicable the "Libre by Abbott" app, introduced by Abbott in the USA in the last month(?), that works on smartphones with all of Abbott's "family" of current Libre sensors (Libre 2, 2+, Libre 3, 3+).

The Libre by Abbott app includes the functionality to "pause" alarms for user-defined periods of time (up to 6 hours).

Alternatively, Abbott should add as soon as practicable to the LibreLink and Libre 3 apps used at present in the United Kingdom the additional functionality present in the USA "Libre by Abbott" app;

2. At present, there is no "real time follow" functionality if one uses the Omnipod 5 insulin pump with a Freestyle Libre 2 Plus cgm as a "hybrid closed loop." My understanding is that (as far as Abbott's responsibility for this omission is concerned) the Bluetooth chip used in the Libre 2 Plus sensor only allows the Libre 2 Plus to communicate with the Omnipod 5 pod/pump, and not with the Omnipod pump/pod and LibreLink/LibreLinkUp apps simultaneously.

As far as both Abbott and Insulet (makers of the Omnipod 5 insulin pump) have briefed out to patients, neither Insulet nor Abbott have any plans to add "real time follow" functionality to the Omnipod 5/Libre 2 Plus hybrid closed loop. This is a real world concern for parents with diabetic children who need to follow their child's glucose data in real time, or carers looking after vulnerable diabetic adults.

No real time functionality also makes the Omnipod 5/Dexcom G6 (or G7) hybrid closed loop far more compelling for parents and carers because Dexcom continuous glucose sensor paired with an insulin pump to make a hybrid closed loop does offer real time follow functionality.

Lots of very concerned parents of young diabetic children and carers for vulnerable adults who are incredulous as to why neither Abbott nor Insulet are doing anything to add real time follow functionality to their Omnipod/Libre 2 Plus hybrid closed loop;

3. There have also been many who have complained of frequent loss of connectivity (in a significant number of instances for hours at a time) between the Omnipod 5 pump/pod and the Freestyle Libre 2 Plus cgm as a hybrid closed loop.

Users are very aware of the limitations of Bluetooth. However, the fact that a Libre sensor can only be worn (officially) on the back of the upper arm and is not recommended (officially) for use on other parts of the body is a significant limitation as to placement and connectivity issues between Libre 2 Plus and Omnipod 5 when used as a hybrid closed loop.

The prevailing belief amongst a significant number of users is that the connectivity issues are caused because the Bluetooth chip used in the Libre 2 Plus cgm is not up to the task of maintaining connection with the Omnipod 5 pump/pod, compared to the Dexcom G6 cgm.

Why hasn't the Omnipod 5 pump/pod been integrated with the Freestyle Libre 3 Plus cgm in the UK? The Libre 3 cgm (and I assume by extention the Libre 3 Plus cgm) is supposed to have significantly stronger Bluetooth. Although I understand that - like the Freestyle Libre 2 Plus - the Libre 3 and Libre 3 Plus also only have one Bluetooth "channel," which means they can only connect to a single device or app at a time, which is why they cannot connect to an Omnipod 5 pump/pod and Abbott's LibreLink app on a smartphone simultaneously (so "real time follow functionality" is not possible, unlike Dexcom cgms).

4. Users of Libre sensors have been asking for years that Abbott allow glucose data from Abbott Libre sensors to be capable of being sent "direct to a smartwatch," so that the data can be read easily on the watchfaces of popular Apple and Android smartwatches, without having to use third party apps to do so.

Abbott's cgm competitor, Dexcom, has facilitated this "direct to smartwatch" functionality for their Dexcom family of continuous glucose sensors for many years now. In the absence of any intellectual property issues, why won't Abbott do similarly?
 
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BadaBing said:
Very sorry to hear about what your son has gone through.

When I was first diagnosed, a simple letter from one's diabetes consultant or GP confirming the diagnosis was enough to satisfy non-clinician third parties.

My wishlist items for the future of the Libre sensors are:

1. Introduce in the UK as soon as practicable the "Libre by Abbott" app, introduced by Abbott in the USA in the last month(?), that works on smartphones with all of Abbott's "family" of current Libre sensors (Libre 2, 2+, Libre 3, 3+).

The Libre by Abbott app includes the functionality to "pause" alarms for user-defined periods of time (up to 6 hours).

Alternatively, Abbott should add as soon as practicable to the LibreLink and Libre 3 apps used at present in the United Kingdom the additional functionality present in the USA "Libre by Abbott" app;

2. At present, there is no "real time follow" functionality if one uses the Omnipod 5 insulin pump with a Freestyle Libre 2 Plus cgm as a "hybrid closed loop." My understanding is that (as far as Abbott's responsibility for this omission is concerned) the Bluetooth chip used in the Libre 2 Plus sensor only allows the Libre 2 Plus to communicate with the Omnipod 5 pod/pump, and not with the Omnipod pump/pod and LibreLink/LibreLinkUp apps simultaneously.

As far as both Abbott and Insulet (makers of the Omnipod 5 insulin pump) have briefed out to patients, neither Insulet nor Abbott have any plans to add "real time follow" functionality to the Omnipod 5/Libre 2 Plus hybrid closed loop. This is a real world concern for parents with diabetic children who need to follow their child's glucose data in real time, or carers looking after vulnerable diabetic adults.

No real time functionality also makes the Omnipod 5/Dexcom G6 (or G7) hybrid closed loop far more compelling for parents and carers because Dexcom continuous glucose sensor paired with an insulin pump to make a hybrid closed loop does offer real time follow functionality.

Lots of very concerned parents of young diabetic children and carers for vulnerable adults who are incredulous as to why neither Abbott nor Insulet are doing anything to add real time follow functionality to their Omnipod/Libre 2 Plus hybrid closed loop;

3. There have also been many who have complained of frequent loss of connectivity (in a significant number of instsnces for hours at a time) between the Omnipod 5 pump/pod and the Freestyle Libre 2 Plus cgm as a hybridclosed loop.

Users are very aware of the limitations of Bluetooth. However, the fact that a Libre sensor can only be worn (officially) on the back of the upper arm is a significant limitation.

The prevailing belief amongst a significant number of users is that the connectivity issues are caused because the Bluetooth chip used in the Libre 2 Plus is not up to the task of maintaining connection with the Omnipod 5 pump/pod, compared to the Dexcom G6 cgm.

Why hasn't the Omnipod 5 been integrated with the Freestyle Libre 3 Plus cgm in the UK? The Libre 3 (and I assume by extention the Libre 3 Plus) is supposed to have significantly stronger Bluetooth. Although I understand that - like the Freestyle Libre 2 Plus - the Libre 3 and Libre 3 Plus also only have one Bluetooth "channel," which means they can only connect to a single device or app at a time, which is why they cannot connect to an Omnipod 5 pump/pod and Abbott's LibreLink app on a smartphone simultaneously (so "real time follow functionality" is not possible, unlike Dexcom cgms).

4. Users of Libre sensors have been asking for years that Abbott allow glucose data from Abbott Libre sensors to be capable of being sent "direct to a smartwatch," so that the data can be read easily on the watchfaces of popular Apple and Android smartwatches, without having to use third party apps to do so.

Abbott's cgm competitor, Dexcom, has facilitated this "direct to smartwatch" functionality for their Dexcom family of continuous glucose sensors for many years now. In the absence of any intellectual property issues, why won't Abbott do similarly?
Click to expand...
Thank you. I will definitely pass this onto him. He has nothing to do with the app; he's a software engineer who has worked on the sensor; I will pass all of this into him and he can feed it back to the relevant teams. Hopefully they will do something to improve all of this.
 
HelenNicholas said:
Thank you. I will definitely pass this onto him. He has nothing to do with the app; he's a software engineer who has worked on the sensor; I will pass all of this into him and he can feed it back to the relevant teams. Hopefully they will do something to improve all of this.
Click to expand...
Thank you for doing so.

I thought I would highlight "real world" concerns and wishes for both me and others (particularly those using Omnipod 5/Freestyle Libre 2 Plus hybrid closed loop). I didn't expect your husband to be responsible for all those concerns.

However, he can pass those he isn't responsible for on to relevant colleagues within the organisation.

I really would prefer to keep using Libre products rather than switching to Dexcom. But the Libre family of products need significant improvements, all of which are achievable (and which hopefully won't be cost prohibitive to implement).

Right now there is a significant cohort of Libre/Omnipod 5 United Kingdom users who feel that well-founded concerns are not being listened to and acted upon.

I wish your son all the best with his exams.
 
BadaBing said:
Thank you for doing so.

I thought I would highlight "real world" concerns and wishes for both me and others (particularly those using Omnipod 5/Freestyle Libre 2 Plus hybrid closed loop). I didn't expect your husband to be responsible for all those concerns.

However, he can pass those he isn't responsible for on to relevant colleagues within the organisation.

I really would prefer to keep using Libre products rather than switching to Dexcom. But the Libre family of products need significant improvements, all of which are achievable (and which hopefully won't be cost prohibitive to implement).

Right now there is a significant cohort of Libre/Omnipod 5 United Kingdom users who feel that well-founded concerns are not being listened to and acted upon.

I wish your son all the best with his exams.
Click to expand...
Thank you. I think you've hit the nail on the head. Unfortunately it all comes down to cost with everything. Trying to make it cheaper so more people have access to it. I have passed all your points over to him. It's very interesting what you say about the omnipod and Libre; also quite scary as I was really hoping that my son would get a pump; it's put me off him having one now.
 
HelenNicholas said:
Thank you. I think you've hit the nail on the head. Unfortunately it all comes down to cost with everything. Trying to make it cheaper so more people have access to it. I have passed all your points over to him. It's very interesting what you say about the omnipod and Libre; also quite scary as I was really hoping that my son would get a pump; it's put me off him having one now.
Click to expand...
At his age he will be treated as an adult so it will be up to him to decide what he wants to have to manage the condition. It is good he has your support in these early days whilst he makes adjustment to a new way of life.
Remind him he will still be able to do whatever he wants it may just need a bit more planning and preparation. Plenty of good examples of people achieving the heights of their chosen career or sport.
 
HelenNicholas said:
It's very interesting what you say about the omnipod and Libre; also quite scary as I was really hoping that my son would get a pump; it's put me off him having one now.
Click to expand...
If he’s doing his final university exams then he’s long past his diabetes management, blood sugars, and whether he gets a pump, having anything at all to do with you to be honest.
 
as your asking for feedback on using the Libra @HelenNicholas, mine is:
Alarm & Alerts functionality on the Libra app (used) to be a major bug bear for me, because I have Bluetooth enabled hearing aids connected to the same phone as the Libra2Plus Sensor, then every time the sensor sends an alert to my phone asking me to scan the sensor (which it for some reason every time I open the Libra App it used to) for me this was then going directly into my ears through the hearing aids
I did speak to Abbott regarding this, they appeared to listen and got a developer to look into it,
the6 admitted for some reason this was happening and their solution was to send me a FREE reader and suggested I use that rather than their app.
However this I felt was not a realistically practical solution, I also wanted to get the data on my Smart Watch, plus view the data constantly updating

My fix was to turn off all alerts within the LibraLink & LinkUpp apps and just get my alerts through
3 rd part apps, in the end I used GlucoDataHandler which runs on both my phone & Smart Watch, GDH incorporates far better alerts than the original LibraLink & LinkUp apps.
the alerts can be silenced at certain times of the day as other have said the App that Abbot provides does definitely could do with modifications to the alerts (making them customisable )

occasionally I loose connection on the Libra sensor, however it nearly always automatically re-connects ton to BT without the need to scan.

I’ve lost a few sensors where the sensor itself has strangely come off the adhesive, but to be fair to Abbott any problematic or faulty sensors they have without question sent a replacement so they in my opinion do deliver great service
 
Leadinglights said:
At his age he will be treated as an adult so it will be up to him to decide what he wants to have to manage the condition. It is good he has your support in these early days whilst he makes adjustment to a new way of life.
Remind him he will still be able to do whatever he wants it may just need a bit more planning and preparation. Plenty of good examples of people achieving the heights of their chosen career or sport.
Click to expand...
Yes totally up to him. Thank you it's good to have such positive words. I, personally have been to some very dark places. It's so nice to have this community. Thank you
 
Regarding feedback on the Libre, my comments are based on very recent experience.
I normally use a different CGM that works with my insulin pump. I do not use hybrid closed loop (HCL) but my pump is aware of my BG. I self fund this CGM but not pump.
Recently, I needed to revert to the Libre 2+. It has been some years since I used Libre. I got fed up with it after less than 10 days.
The things that annoyed me were
- needing to scan it when it lost connection. Why could it not reconnect itself?
- needing two phone apps (LibreLink and the one that controls my pump) which didn't talk to each other.
- the biggest annoyance was the inability to calibrate the Libre. Some bigwig at Abbott seems to have decided we are all physiologically the same. However, I find the difference between finger pricks and the Libre are inconsistent. And they drift over time (get worse as the sensor gets older). Previously, when I used Libre all the time, I used xDrip as the additional features included calibration. This allowed me to keep within allowable tolerance for the full life of a sensor. It also gave me peace of mind to depend upon the Libre.
 
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