# Freestyle Libre



## Mini-Vicki (Dec 13, 2015)

I've been looking into this system, I know it's not on prescription yet, hopefully one day!
I'm considering self funding in the meantime. Does anyone have any experience with them, and can give me more details?

Thanks all x


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## Robin (Dec 13, 2015)

Ive been using one on and off since the summer, when I got to the top of the waiting list. It's been brilliant for telling me what was going on overnight, (I discovered I have a huge dip around 3am I knew nothing about) and also for discovering peaks following carby meals.
I was on the waiting list about four months, I emailed first of all, and then I discovered I hadn't got on the list properly, and I had to phone them.
I've never had a problem with sensors falling off, or with being allergic to the sticky stuff, but I understand that some people have. (But if you google it, there are a lot of tips on how to get round this, tegaderm, compeed for example)
Ive also never had a problem with supply of the sensors, but again, some people have had delays, when Abbott have had distribution problems.

When I first put a sensor on, it takes 24 hrs to bed in, I get some low results to begin with. Ive read that if you put it on and don't activate it for 24 hrs, you get more reliable results quicker. I find that compared with my normal meter, it tends to register lows as lower, and highs as higher, but in the mid range it's spot on with it, the readings also tend to lag behind a meter by about 10 mins, because it measures different fluid.

Because of cost, I don't use one all the time ( though it would be brilliant if I could) but I found that I learnt an awful lot from the first one, which I just used in a normal routine, and I now use it when I'm away, or out of routine, becauE it helps you spot trends or anomalies so much more quickly, I will definitely be slapping one on over Christmas.
Hope this helps, if there's any specific questions, fire away!


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## Mini-Vicki (Dec 13, 2015)

Thanks Robin, that's brilliant.
How long do the sensors last for once on? And when you order them, is it one per pack/order?

Thanks for replying


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## trophywench (Dec 13, 2015)

There's facebook group - but be warned! - cos a lot of the questions asked on there are 'basic' Type 1 questions - whether from ladies 'suddenly' finding they go high before their periods, or getting rebound highs after hypos.  I mean - basic in terms of living with D long term - things we are always giving tips, nods and winks about on the forums - and nob all to do with actually using the Libre, per se.

So I think you have to plough through quite a lot of stuff to find info you might need - on FB of course you don't have the benefit of separate sections or threads - some of which you needn't even open if you aren't interested.

I'd quite like one, specifically for basal testing - but still think it's a bit expensive when only really for that !


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## Robin (Dec 13, 2015)

Mini-Vicki said:


> Thanks Robin, that's brilliant.
> How long do the sensors last for once on? And when you order them, is it one per pack/order?
> 
> Thanks for replying


The sensor lasts fourteen days, and it's not like the other CGMs where I understand people can make them last longer, once you get to exactly two weeks, they switch themselves off!
There is an introductory pack of the reader and two sensors, which comes at a slight discount. After that, the sensors come in single units, and you are allowed to order up to two at a time. (I assume they won't let you order them more frequently than every four weeks, either, but I've never tried). Also, when you order them, the price quoted is inclusive of VAT, but you get to a point in the ordering process where you tick a declaration that you're diabetic, and the VAT is then deducted.


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## Northerner (Dec 13, 2015)

You might want to read the review that Mike (everydayupsanddowns) wrote about the Libre:

http://www.everydayupsanddowns.co.uk/2014/10/abbott-freestyle-libre-results-vs-bg.html


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## everydayupsanddowns (Dec 13, 2015)

Robin said:


> After that, the sensors come in single units, and you are allowed to order up to two at a time. (I assume they won't let you order them more frequently than every four weeks, either, but I've never tried).



Once you can start ordering you can order two sensors every fortnight (so twice as many as you should ever need). However there is still a waiting list in operation, though I spoke to Abbott recently and their new high-volume production facility launches December/January - they are hoping that the UK waiting list will have cleared by the end of Feb I think.


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## TheClockworkDodo (Dec 13, 2015)

Thanks for starting this thread, Vicki - really useful, I've been looking at the Libre too 

My main concern is the sticky stuff, to which I'd almost certainly be allergic.  And I wonder (unrelated to the allergy issue) are the sensors just attached via sticky stuff (ie nothing actually sticking into your skin)?


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## Robin (Dec 14, 2015)

TheClockworkDodo said:


> Thanks for starting this thread, Vicki - really useful, I've been looking at the Libre too
> 
> My main concern is the sticky stuff, to which I'd almost certainly be allergic.  And I wonder (unrelated to the allergy issue) are the sensors just attached via sticky stuff (ie nothing actually sticking into your skin)?


There's a small filament that sits under the skin, that is delivered using an applicator, it's no worse than doing a finger prick test.


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## DeusXM (Dec 14, 2015)

After a year on the waiting list, I finally got my invitation email through so mine's currently in the post and should be here later this week. 

When I originally signed up, I was sorta hoping to have one in time for Christmas so I could keep a close eye on things. I just wasn't necessarily expecting it to be Christmas a year later! Will share my thoughts once I've had a chance to play with it if anyone's interested.


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## Robin (Dec 14, 2015)

A year! Sounds like you slipped through the net, I signed up in March, after a lot of faffing, checking up and realising they hadn't put me on the list, I got properly on in April, and then got mine in July.


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## DeusXM (Dec 14, 2015)

On the plus side, mine has literally just arrived!


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## HOBIE (Dec 14, 2015)

Good for you Deus. They are a world of info.


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## everydayupsanddowns (Dec 14, 2015)

TheClockworkDodo said:


> Thanks for starting this thread, Vicki - really useful, I've been looking at the Libre too
> 
> My main concern is the sticky stuff, to which I'd almost certainly be allergic.  And I wonder (unrelated to the allergy issue) are the sensors just attached via sticky stuff (ie nothing actually sticking into your skin)?



The sensor is held in place with a circular pad of adhesive almost exactly the same size as the £2-coin-sized sensor disc.

There are a handful of users who have developed an allergic reaction who combat it in a variety of ways (cavilon spray, hypoallergenic barrier films etc). There's a group on FB run by Lesley 'INPUT' Jordan with helpful discussions.

The important thing is not to expect 100% accuracy with blood glucose tests all the time - especially in the first day or two which are known to be a bit more erratic. Some people choose to insert the sensor a day early and then activate it after it has had some time to settle, but Abbott do not recommend this. Generally I find the accuracy very good indeed, mostly within 1mmol/L or less of a fingerstick BG except when BG is moving rapidly, but there will always be a few readings which are more like 2mmol/L out (partly because the sensor and fingerstick are measuring two completely different substances and passing the raw results through different algorithms.

Short version though - I trust it, and my ability to manage is significantly improved while wearing sensors.


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## shirley (Dec 14, 2015)

I have a Libre for my son who is 20 and has learning disabilities.   Could not live without it and have only had one dodgy sensor in the past 8 months or so.  This was replaced promptly by Abbott.   Do find it more inaccurate for the first 12-24 hours and it reads a little low most of the time but generally pretty accurate.    It is a complete godsend for us, can test my son in the night without waking and trust others to keep a careful eye on him throughout the day.  I think I have mentioned in previous threads that it makes me a little obsessive, but then I am obsessive about keeping his blood sugars as normal as might be possible.


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## pottersusan (Dec 14, 2015)

I hate to be depressing but I was told a few months ago that they weren't even adding anyone to the waiting list.


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## everydayupsanddowns (Dec 14, 2015)

pottersusan said:


> I hate to be depressing but I was told a few months ago that they weren't even adding anyone to the waiting list.


Not sure where you heard that pottersusan, but that is very different to the information I got from their director of comms last week. As far as I know the waiting list is still open, and fingers-crossed should only be very short lived once the new production line is working.



> * FreeStyle Libre Manufacturing*: We are on track for our high-volume manufacturing facility to be up and running in early January 2016 meaning that we will be able to invite new customers to experience FreeStyle Libre as early as during February, 2016*. During January, we will continue to invite registered customers from our waiting list to experience FreeStyle Libre, but at a more accelerated rate, until the waiting lists are cleared.



* they are intending to clear the existing UK backlog during January/February.


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## pottersusan (Dec 14, 2015)

From the manufacturer! Right and left hand...?


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## TheClockworkDodo (Dec 14, 2015)

Thanks Robin and Mike for the further info. about attaching the sensors.  Sounds as though I'd at least be able to attach them, if there's an applicator (I couldn't stick a needle I could see into my skin to save my life - a bit ironic, isn't it?  Thank God for covered needles!).

Any idea what the filament is made from? - if it's metal I'd probably be OK allergy-wise with that at least, though any disinfectant on it might be a problem if it's in my skin for any length of time.  Not sure about barrier sprays and creams though - I'd probably be allergic to those too, no matter how theoretically hypoallergenic they are!  But would be worth a shot, to get an idea of what my bgl does overnight.


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## Annette (Dec 14, 2015)

TheClockworkDodo said:


> Thanks Robin and Mike for the further info. about attaching the sensors.  Sounds as though I'd at least be able to attach them, if there's an applicator (I couldn't stick a needle I could see into my skin to save my life - a bit ironic, isn't it?  Thank God for covered needles!).
> 
> Any idea what the filament is made from? - if it's metal I'd probably be OK allergy-wise with that at least, though any disinfectant on it might be a problem if it's in my skin for any length of time.  Not sure about barrier sprays and creams though - I'd probably be allergic to those too, no matter how theoretically hypoallergenic they are!  But would be worth a shot, to get an idea of what my bgl does overnight.


There is an applicator - you never see the needle at all.
I think the filament is a teflon type of thing - its too flexible to be metal, I think (I took the first one totally apart once I'd used it to see how it worked)


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## DeusXM (Dec 14, 2015)

I've found if you look inside the applicator before you click it on your arm, there's definitely something that _looks_ like a needle there, but I decided not to touch it to see how flexible it is until I've finished using it. Like Annette I think I'll be taking it all apart when I'm done!

The application process was very simple (although I think an applicator in every pack is a little wasteful) although I'll be honest, I definitely 'felt' it going in and it stung for a few seconds - although that seems like a very minor thing to bring up given T1 makes you excruciating familiar with that sort of thing anyway!

Also, pleasingly, the unlock code for the professional mode is the same as the Insulinx.

However, I am suffering a MAJOR side effect - obsessively scanning!


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## trophywench (Dec 14, 2015)

I don't have a Libre but I imagine the applicator is similar to pump ones - the filament has an introducer needle going through it which makes it appear scarily long, because the needle has to go right through the filament and out the other end, otherwise it quite simply couldn't go in !  LOL  So you can see it, when you load the cannula into the inserter, but it's completely hidden as it goes into you.  Then, you withdraw the inserter and the needle.

Pump cannulas are either Teflon or stainless steel - but some people do have trouble with Teflon - I think Pumper Sue may be allergic to it? - but I've not got the best memory so don't take that as Gospel from me!


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## trophywench (Dec 14, 2015)

@DeusXM  - don't wear the (blank) thing out before Xmas!!  LOL


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## karen1975 (Dec 14, 2015)

Hi, I have just started using the freestyle libre this morning, the first sensor that I apply did not connect to the machine, phoned abbotts and they are resending one out.

As these are quite expensive my second sensor I took into my diabetic nurse and asked her to apply it.  After an hour it connect to the machine my problem is my reading a massively different from my meter (Abbotts Optium Exceed).  I even tested with the sensor machine via a finger prick test and that match my meter machine.  My reading on my meter machine was 10.2 and on the sensor it was 5.1.  This seems a very big difference to me.  I have been testing both all afternoon and on average the reading a 6 to 7 points out.  With the sensor always been lower and my finger pricking machine.

Any help would be great

Cheers Karen


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## Annette (Dec 14, 2015)

karen1975 said:


> Hi, I have just started using the freestyle libre this morning, the first sensor that I apply did not connect to the machine, phoned abbotts and they are resending one out.
> 
> As these are quite expensive my second sensor I took into my diabetic nurse and asked her to apply it.  After an hour it connect to the machine my problem is my reading a massively different from my meter (Abbotts Optium Exceed).  I even tested with the sensor machine via a finger prick test and that match my meter machine.  My reading on my meter machine was 10.2 and on the sensor it was 5.1.  This seems a very big difference to me.  I have been testing both all afternoon and on average the reading a 6 to 7 points out.  With the sensor always been lower and my finger pricking machine.
> 
> ...


Karen
It can take a day or even a few days before the sensor settles in and readings become 'true'. Give it a few days (My worst was 4 days, I think EDUAD had one that took a week to settle) before writing it off.


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## Robin (Dec 14, 2015)

Mine certainly read quite a lot lower than my meter for the first 12-24 hours.


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## DeusXM (Dec 14, 2015)

Mine has been largely on par throughout the day. In fact, the first 'hour' reading on the Libre was identical to that on my Accu-Check Mobile. I noticed a divergence of as much as 3mmol/l about an hour after lunch but the Libre seems to have caught up. It's definitely 'slower' at the moment but only by about 15 minutes and here's hoping it beds in properly soon.


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## everydayupsanddowns (Dec 14, 2015)

trophywench said:


> @DeusXM  - don't wear the (blank) thing out before Xmas!!  LOL


Hehe! 30-odd scans a day is not unusual for me - especially is 'watching and waiting' to eat or for a correction to kick in


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## pottersusan (Dec 14, 2015)

everydayupsanddowns said:


> Hehe! 30-odd scans a day is not unusual for me - especially is 'watching and waiting' to eat or for a correction to kick in


I'm the same with my CGM . You learn so much about what's going on that you're unaware of otherwise. I'm obsessed at the moment watching the effect of germs on my readings.


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## karen1975 (Dec 14, 2015)

Hi, Thanks for all the advice, I phoned Abbotts and they think it might be faulty.  They are sending another one out to me, but advised to keep this one in on the off chance that it might settle down.  Finger crossed.  Tonight I got one reading that was near perfect to my meter and half an hour later all over the place.  It has been great to see I am not the only one with this problem.  Its gets a bit confusing when you are unsure of what right and whats wrong.


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## pav (Dec 14, 2015)

Had an email from Abbott today from Jan 2016 plan to set up a high volume production line to clear the back log of people waiting for them to be available.


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## TheClockworkDodo (Dec 14, 2015)

Thanks everyone for the info. about the filament - hmm, yes, I think teflon might well be a problem for me, so I suspect I will have to email Abbott and ask about it.  I'm not worried about seeing needles outside my body, or about stinging needles, just so long as I don't see them go into me, they are fine! 

Probably best if I have another chat with DSN and/or consultant about CGM, because if I can borrow an NHS one for a couple of weeks, I will at least have an idea of whether it's likely to be feasible for me to invest in the Freestyle Libre, or whether it's just likely to set off too many allergies, though I realise the exact materials used will vary from make to make.

If I do end up getting one I'm sure I will be joining the obsessive scanning club though!


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## pav (Dec 14, 2015)

Hope it won't be a problem for me as well, if I react to teflon  in the same way as I react to silicon based products like ear plugs.


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## Matt Cycle (Dec 15, 2015)

It seems they are accepting new customers from the waiting list in January.  Got the following e-mail from them yesterday:

"We would like to thank you again for your interest in the FreeStyle Libre flash glucose monitoring system and for your continued patience in regard to ordering and receiving your device.

We realise that it may have been some time since you last heard from us but we wish to provide you with an update on the work we’re doing to ensure more people can experience the freedom from routine finger pricks* with the FreeStyle Libre system. We’re delighted to now advise that we expect to accept new customers from our waiting list in January 2016.







*What have we been up to this year? *
When we launched the FreeStyle Libre system last year there was a higher than expected demand for the system. This meant we had to place new customers on a waiting list. The demand has been sustained and, in order to fulfil our commitments to existing customers, the waiting list system has had to remain in place throughout the year.




To make sure we’re better placed to meet ongoing product demand and completely clear our waiting list, we have accelerated plans for a high-volume production line and expect this to be up and running in January 2016.
As soon as we are able to fulfil your order, we will be back in touch again.

The FreeStyle Team"


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## Jill mattinson (Mar 5, 2016)

Robin said:


> Ive been using one on and off since the summer, when I got to the top of the waiting list. It's been brilliant for telling me what was going on overnight, (I discovered I have a huge dip around 3am I knew nothing about) and also for discovering peaks following carby meals.
> I was on the waiting list about four months, I emailed first of all, and then I discovered I hadn't got on the list properly, and I had to phone them.
> I've never had a problem with sensors falling off, or with being allergic to the sticky stuff, but I understand that some people have. (But if you google it, there are a lot of tips on how to get round this, tegaderm, compeed for example)
> Ive also never had a problem with supply of the sensors, but again, some people have had delays, when Abbott have had distribution problems.
> ...


i


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## Jill mattinson (Mar 5, 2016)

everydayupsanddowns said:


> Not sure where you heard that pottersusan, but that is very different to the information I got from their director of comms last week. As far as I know the waiting list is still open, and fingers-crossed should only be very short lived once the new production line is working.
> 
> 
> 
> * they are intending to clear the existing UK backlog during January/February.


Hi sorry if I'm sounding stupid but just started using my freestyle libre and trying to find out how I get my over night readings without scanning??


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## Matt Cycle (Mar 5, 2016)

Hi Jill

The sensor stores up to 8 hours of data.  So if you scan before bed, then again when you wake up (as long as it's less than 8 hours) the graph will give you the pattern throughout the night.  Obviously if you wake up in the night you can scan then as well.


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## Annette (Mar 5, 2016)

Scan last thing (just before you turn out the light). Scan again as soon as you wake. On screen will be the graph of what your bgs have done in the in between time. If it has been more than 8 hours, you will lose the first section - the sensor only holds 8 hours worth of data - so if you wake in the night, do a quick scan to ensure you dont lose any data - doesnt matter if you lose a bit - it wont be too much unless you sleep 12 hours straight


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## Robin (Mar 5, 2016)

Jill mattinson said:


> Hi sorry if I'm sounding stupid but just started using my freestyle libre and trying to find out how I get my over night readings without scanning??


Hi Jill. Every time you scan, you get a readout ( a little graph appears on the screen) of what's gone on for the last eight hours. So although when you go to the Review History section you wont get a figure in the Logbook, it all joins up and appears as a continuous readout on the Daily Graph. It's a bit small, but when you download it on to a computer, it's much bigger, and easier to read off. (Hope I've explained this clearly enough, yell if there's anything you need expanding.)


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## everydayupsanddowns (Mar 6, 2016)

Jill mattinson said:


> Hi sorry if I'm sounding stupid but just started using my freestyle libre and trying to find out how I get my over night readings without scanning??



As others have said Jill the Libre sensor automatically continuously samples BGs every minute and then provides a datapoint on the graphs every 15 minutes. You can get a reading whenever you want, of course, but effectively you need only scan 3 (perfectly timed) times a day to get a full 24 hour trace. 

Of course, that hardly does justice to the potential of the Libre to help you see what is going on between fingerpricks!

The other interesting thing about the 8 hour storage is that it means you can, almost for the first time, observe BG profile during swimming. I gather that Bluetooth struggles to communicate through water, and only some of the receivers (eg some sensor-augmented waterproof pumps) can be worn while swimming, but with a Libre you can scan every so often during a swim and the sensor will have retained all the data in between.


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