Did you have good or bad experience with the Libre?

[22nw22]

Hi.

Having been approved yesterday to get an NHS-Funded Freestyle Libre, just need your experience as haven't used the Libre sensors since 2016, the year I started/stopped due to price. It is still fairly new but I still need to get training done.

Just need experiences on the sensors.
Mine were:
Good
Pricey (I wish they were on the NHS earlier on, I'd be on them already if they were on it.)
Not so sticky for me (I needed to use a bandage just to keep the sensor on. I gotta be careful when I have showers and probably get around 2 boxes of bandage or something.


Thanks.
(PS: I will be getting it no matter what, as I have trainings booked and I also need it according to my doctor.)

Hope I have a lovely time with the machine, I need it...

 

[JohnEGreen]

I had a very bad experience I could not get one

 

[Knikki]

I have been running one since July this year and so far:

Have got HB1Ac down.
They stick and are a bit of an ar53 to get off but if I leave that area alone it clears up after a bit.
It is good for trends.
Accuracy can be very dependent and where you place the sensor.
Accuracy is a bit hit and miss, but I use mine with a MiaoMiao and xDrip which I find better than the Libre Reader and Mobile App, but not al the time.
Overall happy with it but it is just a tool which is used in the Diabetes game.

 

[22nw22]

I had a very bad experience I could not get one

I am so sorry you couldn't get a Libre. Can you order one from Abbott or is it too expensive?

 

[22nw22]

@JohnEGreen You can order one from abbott, although you'll have to self-fund it

 

[Boo1979]

I was self funding sensors for a while and found them initially good for showing trends but with variable accuracy in terms of how well readings matched blood glucose results ( even after allowing for the time lag between blood and inierstitial fluid readings). Readings from the Libre when BG were in the 4-7 range, could be 1.5-2.5mmol out
After 6-9 months I developed an allergic reaction ( the pharmacist thought it was probably to the filament rather than the adhesive used on the sensors, although he also said allergies to the adhesive were being reported moe frequently) and this coincided with my Libre readings becoming much more erratic ( double of half the BG reading), mutiple straight out of the box sensor failures, poor adhesion, etc
I no longer see Libre as a good investment for me but think it is still a good bit of kit for showing BG trends in those people who are not allergic to it. From my experience, I do not think it is accurate enough yet for people to base medication dose decisions / adjustments on
Hope it all works well for you

 

[JohnEGreen]

@JohnEGreen You can order one from abbott, although you'll have to self-fund it

When I tried that they were not taking new customers and there was along waiting list don't know if the situation is different now if so may try once more.

 

[DavidGrahamJones]

Hope I have a lovely time with the machine, I need it...

I ordered one when they were first announced, it was a while before they became available. I have had just one sensor that started misreading after 12 days so no complaints really. I've had no problems with the reactions to the adhesive or the stickiness and although I started using Tiger tape, when I added a MiaoMiao to the setup, I stopped using tape and generally it's not a problem although I've not had a soak in the bath or gone swimming yet.

In my experience it has been a game changer. I don't take the readings as 100% accurate but as a fair approximation, it's more useful for trends. It is there as a constant reminder of any sins and very useful when unexpected BG rise occur, I've cut back on things that are low in carbs but still affect my BG. It has also shown how protein can affect BG. I'm normally somewhere between 5 and 7, but 2 eggs for breakfast can cause a small blip.

One thing I'm in the process of doing is to convert the daily report which is a PDF into a JPG and then stringing them together to create a video of my 24 hr BG over 3 or more months, then showing that to my DN or GP.

 

[becca59]

I self fund, it has been a life changer. I am retired and have no spare cash. I am making sacrifices elsewhere. It isn’t perfect, but I have reduced my HBA1C. The biggest problem has been the allergic reaction. Itching, red marks still present 3 months later. At present am putting on 4 layers of Cavilon before applying and then covering with lint and Opsite Flexifix to keep it fixed. As long as that enables me to keep wearing it I am prepared to go that extra mile.

 

[JohnEGreen]

So nothings changed'

Please Note:
Thanks for your patience. In July of this year our second high-volume manufacturing update was finalised, which doubled our capacity for FreeStyle Libre sensors so we are able to improve access to existing customers on a regular and ongoing basis. We are also now working on our next phase of the FreeStyle Libre capacity increase, with a significant investment made in manufacturing.
For the time being we will be continuing to keep our web shop restricted to existing customers. We apologise for any inconvenience caused.
Our existing customers can order 3 sensors every 25 days, all shipping charges will be waived.
New customers will be able to sign up to a waiting list to purchase the FreeStyle Libre system, please click here to register. We will notify you as soon as product becomes available.

 

[Bluetit1802]

@JohnEGreen you can buy them in various pharmacies but I doubt they have the readers. Lots of T1s do it this way. You would either have to have a compatible phone for this, or ask Abbott if you can have a reader without the sensors. It is the sensors that are in short supply. I was lucky because I have used the Libre for several years as a registered user, so I don't need to be on the waiting list. I order mine and have them within a few days.

 

[NicoleC1971]

I am finding it useful.
My problem has always been going up too high but not spotting the trend in time then struggling to get it down. So the fsl makes it easy to nip that in the bud. Seem to have the kind of diabetes where my liver chugs out glucose without inhibition or perhaps that is all type 1s! (see Benjamin Bikman on the topic of glucagon).

 

[22nw22]

We have what is essentially a FreeStyle Libre sensor deficit @JohnEGreen. I think part of it might have been added on due to NHS reimbursement. If they sorted out their supply before they reimbursed the sensors, then we wouldn't have a libre sensor stress/deficit at this scale. Although if this way I wouldn't have gotten funding and training. NHS reimbursement was pretty much the last hope for poorer people. At least we have them reimbursed.


Yes, the deficit would have been this bad without a capacity bad due to the high demand even for self funding only, and NHS is having like a crisis, so the reimbursement for everyone who wanted one to get one would have knocked people off the waiting list and the NHS would be even more poor money wise. Such a shame the government is treating the NHS this way.
I am awaiting my trainings.

 

[JohnEGreen]

My mistake I was under the impression you could not buy the system not just the sensors.

Best start saving again spent the money elsewhere.

 

[22nw22]

My mistake I was under the impression you could not buy the system not just the sensors.

Best start saving again spent the money elsewhere.

Nah, we're just under a Libre sensor deficit at the moment, meaning there aren't enough Libre sensors to meet demand. I am getting training for this system as I have been found to meet the criteria, therefore, increased the demand for the sensors. The only way to get us out of the deficit is to increase the capacity and amount being produced at a time, it seems rather severe.

 

[DavidGrahamJones]

It is the sensors that are in short supply.

I get mine from Boots without any problems apart from paying £47.50. I had been getting them from Superdrug at £35 and then £40 but they had been restricted by some sort of quota system and it became rather hit and miss as to whether I could get any when I wanted to.
Still waiting to hear of the newer sensors that have Bluetooth (range over 30ft) as well as NFC (Near Field Communication - range 4 cms).

 

[JohnEGreen]

I self fund, it has been a life changer. I am retired and have no spare cash. I am making sacrifices elsewhere. It isn’t perfect, but I have reduced my HBA1C. The biggest problem has been the allergic reaction. Itching, red marks still present 3 months later. At present am putting on 4 layers of Cavilon before applying and then covering with lint and Opsite Flexifix to keep it fixed. As long as that enables me to keep wearing it I am prepared to go that extra mile.

There is now a holder available on Amazon don't know if it would be of use or not.

 

[22nw22]

I get mine from Boots without any problems apart from paying £47.50. I had been getting them from Superdrug at £35 and then £40 but they had been restricted by some sort of quota system and it became rather hit and miss as to whether I could get any when I wanted to.
Still waiting to hear of the newer sensors that have Bluetooth (range over 30ft) as well as NFC (Near Field Communication - range 4 cms).

Well, not everyone is lucky. Abbott needs to work on increasing the amount manufactured. That way is the only way to stop this deficit.

 

[DavidGrahamJones]

Well, not everyone is lucky.

I might have misunderstood. Are you saying that you have a prescription for the FreeStyle Libre but there is an inadequate supply? In Buckinghamshire there doesn't seem to be any problem at all, is this a problem locally to you? Do other Libre users have a problem with supply?

Edit: Just be mooching around the Facebook pages for some of the FS Libre groups and there is no mention of shortages. My local Boots gets them directly from Abbott and they arrive the next day, that doesn't sound like a problem at the Abbott end. Who supplies your pharmacy, I've heard of middle men stockpile different pharmaceutical items to reduce supply and increase the price.

Edit: Apologies for yet another thing. I very much have a bee in my bonnet about the way the price of these sensors varies even within the same company, for example Boots seems to charge different prices in different parts of the UK. From what you're saying supply seems to differ as well. Just out of interest, where abouts do you live.

 

[22nw22]

I might have misunderstood. Are you saying that you have a prescription for the FreeStyle Libre but there is an inadequate supply? In Buckinghamshire there doesn't seem to be any problem at all, is this a problem locally to you? Do other Libre users have a problem with supply?

Edit: Just be mooching around the Facebook pages for some of the FS Libre groups and there is no mention of shortages. My local Boots gets them directly from Abbott and they arrive the next day, that doesn't sound like a problem at the Abbott end. Who supplies your pharmacy, I've heard of middle men stockpile different pharmaceutical items to reduce supply and increase the price.

Edit: Apologies for yet another thing. I very much have a bee in my bonnet about the way the price of these sensors varies even within the same company, for example Boots seems to charge different prices in different parts of the UK. From what you're saying supply seems to differ as well. Just out of interest, where abouts do you live.

Was lucky myself but not everyone is.