Freestyle Libre what do we think?

[emma_hughes3]

I'm doing a 2 week trial with the Freestyle Libre this Tuesday, I was wondering what people thought of it? I'm a Type 1 diabetic and have been for 24 years, my control has been up and down but at the moment my bloods have been more high than low. They've cut down my lantus by 14 units as i was experiencing dangerous hypos on a morning, but since this cut my bloods seem to run too high now usually between 12-20 on a morning and usually always in its teens during the day, this is why my nurse has put me on this trial to keep a closer eye on my blood sugars. My question is with the libre did you keep better control of your blood sugars being able to check on them all the time?

Thank you

 

[therower]

Hi @emma_hughes3 . I've not used a libre, but my understanding is that the libre gives far more information about trends and patterns with your blood sugar as opposed to finger pricking.
This information can then be used to make adjustments to improve your control.
I'll tag @Snapsy and @Scott-C . Both will hopefully be able to give you some good insight to using a libre.
Good luck.

 

[Deleted Account]

I think the value of the Libre is the history and trends. It took me longer than my two week trial to realise this. During the trail, I was just frustrated that the values it gave were so far out from my finger prick tests ... and that it fell off.
Unfortunately, the Libre has been handed out for trials without explaining how to use it. I fear the same may happen when it is available in the NHS.

Coincidentally, I blog for Diabetes UK and, following the recent announcement, they asked me to write a post on this topic. If you are interested, it is available at https://blogs.diabetes.org.uk/?p=9247

 

[himtoo]

Hi @emma_hughes3

I use the Libre -- I started with the 2 week trial and it was very valuable helping to identify trends and patterns.

I can't afford to wear one all the time -- so mostly I choose to wear it when going on holiday or when I want to double check and review my basal rates on my pump.

the libre definitely helps in identifying potential hypos ( the arrow that points up or down next to the reading )
this has allowed me to treat before the hypo has actually occurred.

tagging @Juicyj for some support on this too.

all the best !!

 

[Scott-C]

Hi, Emma, I've found it to be a huge help.

Although I've not avoided hypos altogether, I can honestly say that in the year I've been using it, I've not had any really bad ones, and I put that down to the additional information libre gives me.

The most obvious thing it's good for is giving you a heads up on a hypo so you can take some sugar and stop it happening. When you see, say, a 5 with downward pointing arrow, look at the graph to see if it's on a downwards trend, have a think about insulin on board etc., maybe cross check with a bg test, then take a few grams, it's good fun watching it flatten out the graph and the arrow levelling out, knowing that if you hadn't done that you'd have maybe ended up below 4.

Also, useful for keeping an eye on what's happening after meals - gives you a lot of clues as to whether you've under or over bolused for the meal. So, if it turns out you've underbolused and you're spiking way higher than you should be, you can have a correction dose so you don't end up going into the next meal way too high and having to do a correction dose with the meal.

Think of it as getting lots more clues to decide whether small corrections are needed to stop things going out of range, instead of having to make large corections after they've already gone way out.

As you get a full graph, also good for checking whether basal is holding you steady overnight.

Although it's not got alerts, you can get them if you put a Blucon transmitter from Ambrosia Systems on top and link it to xDrip+ on your phone. It'll make the phone ring and wake you up if going too low. Great for avoiding pesky night hypos.

 

[Juicyj]

Some good points mentioned already..

Personally I love being able to see what's happening over night as I can see if my basal pattern is right and also to see if I'm going too low, it's easy to scan and check the Libre whilst doing sport, I like running and cycling and I don't have to stop to check BG levels with either. I can see if I'm going low and take preventative action. I can also view history and check to watch for patterns and again adjust my insulin. The readings are sometimes out by up to 3mmol/l I've noticed generally when I've been high so it's not an accurate method to check your 'HbA1c' by, and I've had a couple fall off too which was disappointing, one sensor was only on 1 day and I caught it in a door frame so be careful to site it under the arm or wear a tegaderm plaster on top, which is also good if you swim to make sure it doesn't fall off.

I wear one every other month on average it's good for holidays and has given me confidence in knowing what's happening.

It's good you're doing the research. I agree with @helensaramay that the NHS should give guidelines on what to expect and how to get the best out of it, otherwise it could be a wasted expense if not used correctly.

 

[Scott-C]

I like running and cycling and I don't have to stop to check BG levels with either.

There's been a few sportspeople mentioning using libre and I recall a few wondering how to get results sent to a smartwatch so it's just a flick of the wrist instead of actually bringing the scanner out.

Thought I'd mention that with the blucon gadget mentioned above at post #5, xDrip+ does text to speech so it would be easy enough to plug a pair of headphones in and it'll read your levels to you every five minutes. Or it can send levels to a smartwatch every five minutes, although I haven't tried that yet. 1abrat posted recently to say they got xDrip+ working fine with a Fossil Q watch.

Sorry, I keep on mentioning blucon in threads, but I'm like a kid with a new toy at the moment....

 

[Celsus]

...Personally I love being able to see what's happening... ...it's easy to scan and check the Libre whilst doing sport, I like running and cycling and I don't have to stop to check BG levels with it either.

Lets add alpine skiing with full layered suit on and waveriding and windsurfing with your wetsuit on to your good list, checking you bg with a quick swipe on the outside. Libre has made it so much simpler to do crazy stuff living your life and still be a diabetic in good control.
Last week I was doing one of those team-building exercises with colleagues where we were in one of those breakout rooms. Starting first 10-15 minutes in a total pitch black room. Ups, did I check my bg before starting this 1hour locked-up 'fun'? Swipe the dongle in the dark and there you have your bg and trend without a fuss. Same btw when you run into the cinema, to be sitting in the dark for 2+ hours. No sweat or hassle!

 

[Jo1407]

We're starting a trial on the 17/10. I'm hoping it'll help when my sons playing football and checking on him through the night.

 

[Snapsy]

@emma_hughes3 I love mine - I got it four months after starting on my pump and I have not looked back!

If I'm going low I can see it coming and head it off. Heading high? Likewise. I can see how exercise affects me - not just during, but over the next few hours. I can see patterns I had no clue were even there in my many years of NOT having a Libre. It's extraordinary.

It costs me money I can ill-afford - but I would hate to be without it.



PS It's struck me that I didn't actually answer the question about improved control: YES! Waaaaay fewer peaks and troughs, in my case.

 

[Juicyj]

Lets add alpine skiing with full layered suit on

Agree I wore mine last year for skiing - didn’t have to spend ages finding somewhere to stop, take gloves off, warm glucose meter, whilst balancing gear on top of ski poles waiting for test result, take insulin or glucose, gloves on - it was scan and ski on the go - perfect !!

 

[tim2000s]

Unfortunately, the Libre has been handed out for trials without explaining how to use it. I fear the same may happen when it is available in the NHS.

From the discussions I've had with both Abbott and those involved in trying to get this on to the NHS, that's precisely what they're trying to avoid, as there's widespread understanding that people need to learn what the data means and how to react to it.

Given the current CCG reticence to pay for Libre, I suspect that, for now at least, this is not a large issue...

 

[Diabeticliberty]

I have one for 2 years now without a break in usage. I am therefore extremely familiar with the many advantages of the Libre. I am also very familiar with a lot of the disadvantages and there are certainly a good number of those. The advantages are of course that you do not need to finger prick quite so much. Although there are times when my own Libre offers readings which are plainly just wrong and I need a finger prick test to confirm or otherwise what I personally feel. A really big benefit for me is that I can wake up at 2.00am in a morning in a foul mood and feeling grumpy and test with my eyes virtually closed. No other testing system that I have ever used affords me this freedom. The thing is though for me and for a lot of other users. The results can prove difficult to trust. Having said this some users state that their Libre consistently offers results very close to their finger prick meter and I have no reason to disbelieve them. The reports that the Libre software generates are very good indeed. The thing is though if the system is giving you inconsistent readings then of course the reports while looking very pretty are worthless. If you are into any outside activity whatsoever then the things are very good also. I teach fly fishing for salmon for a living and I can be stood in the middle of a fast flowing river in heavy rain and if I have the reader in a polythene bag to keep it dry I am able to swipe and get a result in about 2 seconds. This is rarely possible with a finger prick meter. You can also swipe your sensors as many times as you like in its 2 week life span and it will keep on giving you results. I personally only wish that I could completely trust them which unfortunately I can not. There has been a flurry of fevered excitement as an announcement was made declaring we can get Libre on NHS prescription. With the dust now starting to settle the reality appears to be far less simple than this. The NHS is to coin a phrase 'potless' GP's are looking to scrimp money from their budgets wherever and however they can and it seems unlikely that any of us will see them on prescription in the immediate or even mid term future unless someone in government pushes the NHS towards them which seems rather unlikely. To summarise they are a tool with many imperfections. They do however go some way to providing a means to an end. The only real way to judge them effectively is to judge them for yourself.

 

[barrym]

I have been one of the Libre's most enthusiastic fans, and one of its fiercest critics. Convenient? Yes. Accurate? Well, I used to say NO, but it's just different IMHO. Firstly we all assume the meter we are testing against must be right, but that's a huge assumption. There have been times when I've got differences of 5 or more, if I allow more time between comparative readings it often gets closer. Sometimes it's identical at the same time if things are running level, proving the algorithm on the fluid is right. Likewise blood testing from different fingers, hands can give different values. Are bodies aren't machines. Just as we all know we can't rely on food reacting the same every time we have it. Circumstances that we are unaware of change all that. It's the same with Libre tests and blood tests.

Overall I think the Libre is the biggest step forward we have had in years, and using it with an inquiring mind will give benefits.

It is just as easy to make hasty decisions with blood tests as it is with the Libre.

YMMV

 

[Levy]

I'm doing a 2 week trial with the Freestyle Libre this Tuesday, I was wondering what people thought of it? I'm a Type 1 diabetic and have been for 24 years, my control has been up and down but at the moment my bloods have been more high than low. They've cut down my lantus by 14 units as i was experiencing dangerous hypos on a morning, but since this cut my bloods seem to run too high now usually between 12-20 on a morning and usually always in its teens during the day, this is why my nurse has put me on this trial to keep a closer eye on my blood sugars. My question is with the libre did you keep better control of your blood sugars being able to check on them all the time?

Thank you

100% yes! I decided to give Libre a try after my latest A1C (in May) came back at 70 (8.6%). I've been diabetic 15 years and (entirely through my own doing) my control has never been great. My A1Cs have always hovered between 7 and 10, with the odd one even higher.

I have never managed to find a way to stay engaged with my control. I'd have an appointment, kick myself into shape for a couple of weeks after that, testing more and things like that but I would always drop back off again. To me, fingerpricking was (and still is) just a lot of effort.

Since starting on Libre 3 months ago, my predicted A1C is now at 6.4% which is the lowest it's ever been for me. But more importantly, I've actually started taking an active interest in finding out what I need to do to make my control better even after all these months. I'm easily scanning 20 times a day, which makes it quicker to catch your levels creeping out of range. I've been adjusting my basal and bolus ratios, and I've worked out how different foods affect my levels.

Of course I've had the odd issue with a dodgy sensor, but that's always been sorted out by Abbott. I can say with certainty I wouldn't ever consider not having Libre in my life. It's a bit of an investment, but at the end of the day I can't really put a price on my (hopefully) continued good health.

Good luck with your trial! Hope you enjoy it

 

[Diabeticliberty]

100% yes! I decided to give Libre a try after my latest A1C (in May) came back at 70 (8.6%). I've been diabetic 15 years and (entirely through my own doing) my control has never been great. My A1Cs have always hovered between 7 and 10, with the odd one even higher.

I have never managed to find a way to stay engaged with my control. I'd have an appointment, kick myself into shape for a couple of weeks after that, testing more and things like that but I would always drop back off again. To me, fingerpricking was (and still is) just a lot of effort.

Since starting on Libre 3 months ago, my predicted A1C is now at 6.4% which is the lowest it's ever been for me. But more importantly, I've actually started taking an active interest in finding out what I need to do to make my control better even after all these months. I'm easily scanning 20 times a day, which makes it quicker to catch your levels creeping out of range. I've been adjusting my basal and bolus ratios, and I've worked out how different foods affect my levels.

Of course I've had the odd issue with a dodgy sensor, but that's always been sorted out by Abbott. I can say with certainty I wouldn't ever consider not having Libre in my life. It's a bit of an investment, but at the end of the day I can't really put a price on my (hopefully) continued good health.

Good luck with your trial! Hope you enjoy it

With the greatest of respect the predicted A1c from your Libre and actual HbA1c might not even be close to each other. I sincerely hope that they are but in my own case I have a discrepancy of 12 points. My predicted A1c from Libre is 34 my actual was 46. None of the predicted A1c readings in the 2 years that I have been using Libre ever been on the same planet as my actual laboratory tests.

 

[Levy]

With the greatest of respect the predicted A1c from your Libre and actual HbA1c might not even be close to each other. I sincerely hope that they are but in my own case I have a discrepancy of 12 points. My predicted A1c from Libre is 34 my actual was 46. None of the predicted A1c readings in the 2 years that I have been using Libre ever been on the same planet as my actual laboratory tests.

How do you find the general accuracy of your sensors when compared to your finger prick tests? I'm sure as with everything diabetes related, it's different for everyone. I've heard many reports of people who had theirs match very closely.

Either way, I have seen the predicted number only come down and down over the past couple of months of use, so even if it's off I know for a fact it will be a lot lower than it used to be and that's what matters to me. It's an ongoing process anyway, I'm in no way near perfect yet.

 

[Diabeticliberty]

How do you find the general accuracy of your sensors when compared to your finger prick tests? I'm sure as with everything diabetes related, it's different for everyone. I've heard many reports of people who had theirs match very closely.

Either way, I have seen the predicted number only come down and down over the past couple of months of use, so even if it's off I know for a fact it will be a lot lower than it used to be and that's what matters to me. It's an ongoing process anyway, I'm in no way near perfect yet.

I get sensors that are accurate then they wander off sometimes. I have read reports of users whose Libre reads lower than their finger prick meters. Mine wader above and below. When they are close to finger prick results there really is nothing I have ever used which I find as easy to use. The thing is though I have had them before now wander completely off the radar and I find that really disappointing. It is the inconsistency that really floors me. If they were out by the same margin either way then at least I would have something more substantial to work with than I currently have. There are a number of users who feel that there is a time lag of anywhere between 10 and 165 minutes before finger prick results and Libre results will sync. I have run through a load of routines and as of yet been unable to find any direct correlation in timings between my finger prick device and Libre. The really daft thing is that I really like it. I just wish it gave me more trust in what it frequently tells me.

In your own case it sounds really encouraging that your predicted A1c's are reducing on your Libre. I really hope that this comes good for you at your next diabetic review. I would be really interested how you get on if you wouldn't mind posting either on the main board or PM if you prefer

 

[Levy]

I get sensors that are accurate then they wander off sometimes. I have read reports of users whose Libre reads lower than their finger prick meters. Mine wader above and below. When they are close to finger prick results there really is nothing I have ever used which I find as easy to use. The thing is though I have had them before now wander completely off the radar and I find that really disappointing. It is the inconsistency that really floors me. If they were out by the same margin either way then at least I would have something more substantial to work with than I currently have. There are a number of users who feel that there is a time lag of anywhere between 10 and 165 minutes before finger prick results and Libre results will sync. I have run through a load of routines and as of yet been unable to find any direct correlation in timings between my finger prick device and Libre. The really daft thing is that I really like it. I just wish it gave me more trust in what it frequently tells me.

In your own case it sounds really encouraging that your predicted A1c's are reducing on your Libre. I really hope that this comes good for you at your next diabetic review. I would be really interested how you get on if you wouldn't mind posting either on the main board or PM if you prefer

I've generally found all my sensors - bar one - to be extremely accurate when compared to finger pricks (although I do realise that finger pricks also aren't 'the truth' but only another version of it...). Since May, I've experienced one sensor which was reading on average 2mmol/l lower at any time than my finger pricks, which was quite annoying.

Definitely keep you up to date, but I literally have no idea when I'll be seen next. My appointment was supposed to be back in August, but my current clinic are struggling with some consultants leaving/retiring so there's a bit of a waiting list. I'm in the process of changing to another local clinic, but again no idea how that's progressing or when I'll be seen there... The joys!

 

[Diabeticliberty]

I've generally found all my sensors - bar one - to be extremely accurate when compared to finger pricks (although I do realise that finger pricks also aren't 'the truth' but only another version of it...). Since May, I've experienced one sensor which was reading on average 2mmol/l lower at any time than my finger pricks, which was quite annoying.

Definitely keep you up to date, but I literally have no idea when I'll be seen next. My appointment was supposed to be back in August, but my current clinic are struggling with some consultants leaving/retiring so there's a bit of a waiting list. I'm in the process of changing to another local clinic, but again no idea how that's progressing or when I'll be seen there... The joys!

If my Libre was only reading 2 points above or below my finger prick meter then I wouldn't have an issue with it. When I say 'out' I really mean 'out there'. Anywhere between 2 and 7 points out.

Regarding clinics I get the impression from my own that the doctors have all had enough and are going to less stressful occupations like tightrope walking or fire eating

Really good luck with your review. I hope you smash it.