Did you have good or bad experience with the Libre?

[DavidGrahamJones]

Was lucky myself but not everyone is.

I'm wondering who is having supply problems, how many people are having supply problems and why?

Is it individual suppliers (pharmacies - My Superdrug told me that they had a quota imposed by ? They wouldn't say who).

I'd be horrified if I thought some areas of the U.K. have supply problems whereas most don't seem to. I've been checking the FB pages for FS Libre (there are several) and there's no mention of supply issues that I could find. Is it maybe just prescribed sensors for which there's a problem? Therefore not related to supply because prescribed or otherwise, they all come from the same place.

 

[Horlicks]

I have found these sensors almost totally unreliable. 50% I have had to return as they failed to read anything from the very beginning despite following the instructions exactly. The only positive thing I can say is that I always managed to get a free replacement from Abbot but even 50% of those didnt work. I gave up when the last one failed and asked for refund instead. When they worked they were great but now I'm so p****d off with the experience I've lost all confidence in them. I'm T2 on metformin and know wouldnt qualify for an NHS prescription.

 

[DavidGrahamJones]

I have found these sensors almost totally unreliable. 50%

That is a great shame and fortunately for most users, yours is not a common experience. There is a thread on the Diabetes.UK forum where somebody was experiencing a 40% failure rate, but as this isn't a common experience I wonder if it's something else like intermittently faulty readers?

 

[Horlicks]

If they are working for the majority I somehow doubt the sensors. The ones not working get returned to Abbot who I presume test them but I dont get any feedback on that. I can only assume the needle is unable to penetrate deep enough to detect anything yet I am not overweight or obese and have no problems with sweating or skin issues etc. They all get attached firmly and never come loose. Its a job to pull them off! The response from the reader (after the hour) is try again in 10 minutes which I do and get the same message. Try again - same message. Try again - sensor is faulty, replace (as if I have a pile of them at c£50 a throw lying around!)
At the moment, fortunately, they are not something I cannot do without. However that could change in the future and only hope I dont get the same issues or there are at least some viable and affordable alternatives to choose from - that work, for me!

 

[MPM]

I have been using the libre for over 2 years now. I paid for them for the first year or so now get them on perscription. After over 40 years as a type 1 my opinion is the insulin pump has been the best thing in treatment coming in second is the libre. I now have finger tips.

Mike

 

[dkkc]

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...

I am using Freestyle Libre. Once I got reading "LOW" so I decided to check with Free Style Optium strip on the machine and got reading of 5.6. I also checked 3 other machines and got reading ranging from 5.1 to 6.7. The odd thing is I got HbA1c test done and it matched 90 day reading. I am getting another test done and will know if this still holds.

 

[dkkc]

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).

I have read many posting on the forum saying one can get the sensor at Superdrug for GBP 35 to 40. I have checked out a few branches of Superdrug and none of them offer the sensors. Even if one can get VAT exemption, the price directly from Abbott without VAT is above prices indicated from Superdrug. Obviously Superdrug makes a profit so I wonder where do they get their supplies from. So I wonder the rices being mentioned are correct.

 

[DavidGrahamJones]

So I wonder the rices being mentioned are correct.

Absolutely, I initially paid £35 at Superdrug High Wycombe, then it was £40, then they were being told they would have a quota and that went to prescription customers only, which is fair enough albeit disappointing. This is several months ago and the situation with the sensors will have changed. It seems to change across regions and even withing branches of the same store. Plain stupid but what do Abbott care, they can sell every single sensor they make. Their time will come, just needs a newer technology to come along and they are out there.

 

[Morto15]

What I cannot understand is how the nhs prioritise who gets them
I have just started self funding because my consultant says I am not eligible because I am too well controlled!!!! I am type 1 58 years old had it since I was 19 work On a dirty building site as bricklayer so the libre is a revelation for me but I don’t qualify because I am too well controlled

 

[JMK1954]

I received my libre at the hospital clinic on 6th December. I have found the things too unreliable to be of any use to me at all. It was sometimes 3 mml out from a BS test with my metre done less than a minute later. This happened with both sensors I used. On one occasion, the Libre came out with a result of 5.6 mml. I sat down waiting for my husband to order a meal and started to feel hypo almost at once. My meter recorded 3.8 mml. The second libre sensor has also left me with a skin reaction. I am not happy and will not use Libre again under any circumstances.

 

[Deleted Account]

I have read many posting on the forum saying one can get the sensor at Superdrug for GBP 35 to 40. I have checked out a few branches of Superdrug and none of them offer the sensors. Even if one can get VAT exemption, the price directly from Abbott without VAT is above prices indicated from Superdrug. Obviously Superdrug makes a profit so I wonder where do they get their supplies from. So I wonder the rices being mentioned are correct.

You may be looking at some old threads. SuperDrug used to be the cheapest place to buy Libre sensors but a few months ago they hiked up the price. I believe they still sell them but only if you order them in advance from the pharmacy.
I have found Asda Pharmacy to be the cheapest for me. Again, you have to order them in advance but, touch wood, they have had no problems with supply and always turn up within 2 days.

Regarding inaccuracies people are seeing, I too was unimpressed by the Libre at first. However, since discovering the Glimp app (available on Android - I think there is something similar on Apple), my opinion has changed.
Libre measures interstitial fluid rather than BG. It performs some calculations, with a number of assumptions, to convert the interstitial fluid measurement to BG.
The algorithm it uses is proprietary and secret. Therefore, any free app developers have to come up with a new algorithm.
It turns out the algorithm Glimp uses is closer to matching the way my body works.
Furthermore, Libre are "factory calibrated". Unfortunately, my arm is nothing like the "factory arm" so I was seeing huge variations between Libre and finger pricks.
Part of the Glimp algorithm is to take into consideration calibrations from finger prick readings. This significantly helps me.
Finally, interstitial fluid represents BG readings about 15 minutes ago. So, if I am running and my BG is falling fast, the Libre reading (even from the Glimp app) appears to be very wrong.
Any finger prick readings which are entered into Glimp are presented on their graphs. This allows me to visualised readings that are 15 minutes delayed due to rapid changes and close readings when my BG is level.

Libre is not the same as finger pricks and, I believe, the true value of the Libre (or any CGM) is not to save our finger tips but to give us a wealth of trending information to analyse and adjust our diabetes treatment accordingly.
Unfortunately, this is not how it is sold and what many people expect. So they are hugely disappointed.

I would say using Libre to replace finger prick readings is like using a smart phone to make phone calls and nothing more.

Edited to add answer to the title question:
Initially, I had a bad experience of Libre.
Then I learnt how to use it and get the most out of it and my experience improved significantly.
I realised the problem had been with the user not the tool.

 

[maryrachel]

Does anyone know how you get offered these on the NHS? I know its often for people who are badly controlled but does this vary from region to region as is often the case with the NHS? I would be classed as well controlled with HBa1c 48 but no one hears the amount of work and finger pricks it takes to get there.