Freestyle Libre

[maryrachel]

I have been using the freestyle Libre sensor for about 20 months now and have had endless problems with them. Wondering if anyone else has the same experiences? I know lots have people have had the problem with the sensor falling off. I now use several different other products to stop this happening but what about the accuracy? At BG levels below 8 its fine - most of the time - but anything above this can deliver on average 26% inaccuracy. I know there is a timing difference due to being interstitial fluid BG this morning at 06.41 10.3, sensor 13.2. tested 15 minutes later BG 10.9 sensor 13. I have had about 70% of my sensors replaced by Abbotts when informing them of these two problems but this doesn't change the fact it is grossly inaccurate and potentially dangerous. Thankfully I never correct without a back up BG test. I have now been supplied by a BG meter from Abbots to calibrate. Their meter reads close to my own. Of the last 4 sensors all have this same level of inaccuracy. Anyone else experience this?

 

[Muneeb]

I have been using the freestyle Libre sensor for about 20 months now and have had endless problems with them. Wondering if anyone else has the same experiences? I know lots have people have had the problem with the sensor falling off. I now use several different other products to stop this happening but what about the accuracy? At BG levels below 8 its fine - most of the time - but anything above this can deliver on average 26% inaccuracy. I know there is a timing difference due to being interstitial fluid BG this morning at 06.41 10.3, sensor 13.2. tested 15 minutes later BG 10.9 sensor 13. I have had about 70% of my sensors replaced by Abbotts when informing them of these two problems but this doesn't change the fact it is grossly inaccurate and potentially dangerous. Thankfully I never correct without a back up BG test. I have now been supplied by a BG meter from Abbots to calibrate. Their meter reads close to my own. Of the last 4 sensors all have this same level of inaccuracy. Anyone else experience this?

A lot of people experience this, after the initial day or so, accuracy within range is pretty good, above 8/9 its not generally great, similarly towards the end its not great.

I use a third party app called Glimp (Android), it allows me to calibrate the sensor against my meter, and provides much more accurate results across the spectrum. I also use it with miaomiao as a CGM.

There are other apps for IOS (Spike) and XDrip (Android) that people also use.

 

[Fndwheelie]

Also some people are having higher inaccuracies in the warmer weather, if body temperature is up the Libre can read a bit higher than the truth.

 

[Muneeb]

Also some people are having higher inaccuracies in the warmer weather, if body temperature is up the Libre can read a bit higher than the truth.

Should that make a difference to blood glucose concentration? I'm not sure unless its outside the tolerance of the libre; may be more attributed to dehydration.

 

[maryrachel]

Muneeb how does the app work? is available for Iphone?

Helensaramay - my levels are not a problem. I know why they are high in most instances. Mostly dawn phenomenon and hormones so i am adjusting my pump to offset these on the days I get up at 4.50am or at times hormones are an issue. the issue is the sensor inaccuracy as i am trying to use the profile to assess the adjustment I need to make. at £50 a shot its painful to not get accurate readings. I have to pay for these myself as my control is "too good" apparently.

 

[maryrachel]

Ahhh. Dehydration!! Maybe that is it.

 

[Muneeb]

Muneeb how does the app work? is available for Iphone?

Helensaramay - my levels are not a problem. I know why they are high in most instances. Mostly dawn phenomenon and hormones so i am adjusting my pump to offset these on the days I get up at 4.50am or at times hormones are an issue. the issue is the sensor inaccuracy as i am trying to use the profile to assess the adjustment I need to make. at £50 a shot its painful to not get accurate readings. I have to pay for these myself as my control is "too good" apparently.

Well I use Glimp and that is for android not iPhone, the principle in how it works will be similar, but I can't tell you the exact features of Spike for iPhone.

Glimp app basically works the same as the libre app, however you can input actual meter readings into the app and it calibrates the libre readings against the meter, so you get much better accuracy. Say it was reading 6, but it was actually 5, you would put that into the app and it would calibrate it against it. The app has so much more you can do with it compared to the libre app, but to get the most out of it, I believe you need a miaomiao as it makes it into a CGM, then you can get live data to phones, smartwatches with alarms etc. Its not necessary though and you can just scan as normal within the app as well.

But I get much better readings and even rely on it for insulin adjustments, with the odd check everynow and then to make sure its still in line with meter.

 

[maryrachel]

Ok thanks Muneeb. I will take a look.
Just googled Miaomiao. not quite sure how this works? Does it attach to the freestyle libre sensor and feed back to the spike app? Do you have to wear it continuously? Does anyone else use the miaomiao?

 

[Muneeb]

Ok thanks Muneeb. I will take a look.
Just googled Miaomiao. not quite sure how this works? Does it attach to the freestyle libre sensor and feed back to the spike app? Do you have to wear it continuously? Does anyone else use the miaomiao?

Yes, its basically an attachment which sticks on the libre, it then transmits data to the mobile via Bluetooth (similar to dexcom), then you don't have to scan it; and yes you have to wear it continuously, but if you do remove it or even with it on, you can still scan the libre with the reader or phone using NFC as normal.

Quite a lot of people use miaomiao on this forum as well. It may be best for you to get to grips with Spike first, as that's all free, then should you want to, then get a miaomiao. As it is relatively expensive (~£160) - but its rechargeable and reusable, waterproof etc.

 

[Muneeb]

Ok thanks Muneeb. I will take a look.
Just googled Miaomiao. not quite sure how this works? Does it attach to the freestyle libre sensor and feed back to the spike app? Do you have to wear it continuously? Does anyone else use the miaomiao?

Also you can use third party apps alongside the libre app, so you don't need to get rid of that - you will most likely need to keep it installed for activation of a new sensor anyway.

 

[LooperCat]

Ok thanks Muneeb. I will take a look.
Just googled Miaomiao. not quite sure how this works? Does it attach to the freestyle libre sensor and feed back to the spike app? Do you have to wear it continuously? Does anyone else use the miaomiao?

I’ve been using it for 15 months now and wouldn’t be without it, this code will get you a discount on one:

http://portal.referralcandy.com/WJ5...ccessful_email&type=referral_link_email_click

I wear mine all the time, it effectively scans the Libre every 5 minutes for you, and transmits the data to your phone, and you can set alarms and push the data to a smartwatch. It’s brilliant!

 

[LooperCat]

Quite a lot of people use miaomiao on this forum as well. It may be best for you to get to grips with Spike first, as that's all free, then should you want to, then get a miaomiao.

Spike doesn’t work with Libre alone, it’s a data collection app for MiaoMiao and other CGMs. You can’t scan using it.

 

[Fndwheelie]

Should that make a difference to blood glucose concentration? I'm not sure unless its outside the tolerance of the libre; may be more attributed to dehydration.

Heat doesn’t affect BLOOD glucose, but the Libre doesn’t monitor the blood it reads from a layer of fluid just under the skin that is affected by heat and possibly hydration levels have some impact too.

 

[Muneeb]

Spike doesn’t work with Libre alone, it’s a data collection app for MiaoMiao and other CGMs. You can’t scan using it.

Thanks for clarifying. In that case either an android phone or a miaomiao would be the options.

 

[Muneeb]

Heat doesn’t affect BLOOD glucose, but the Libre doesn’t monitor the blood it reads from a layer of fluid just under the skin that is affected by heat and possibly hydration levels have some impact too.

Yes I agree heat may affect it, but through dehydration, not just the notion of body temperature increasing itself.

 

[maryrachel]

Thanks all for your help. I think dehydration is a part for me. i will monitor that. Is anyone prepared to say if they get their libre sensors on the NHS or not? I have tried but cant and wondering if it is just in my area? I am in Calderdale, West Yorkshire.

 

[Muneeb]

Thanks all for your help. I think dehydration is a part for me. i will monitor that. Is anyone prepared to say if they get their libre sensors on the NHS or not? I have tried but cant and wondering if it is just in my area? I am in Calderdale, West Yorkshire.

I get mine on the NHS now, im in Leeds and I met the criteria and was pretty pain free to get them.

 

[MeiChanski]

Thanks all for your help. I think dehydration is a part for me. i will monitor that. Is anyone prepared to say if they get their libre sensors on the NHS or not? I have tried but cant and wondering if it is just in my area? I am in Calderdale, West Yorkshire.

What was their reason to not prescribe it? I’ve been prescribed them since the 10th June and I am in South Warwickshire. If I was back in SE London, I probably would have had trouble trying to get it.

 

[MeiChanski]

Sorry OP, I just read that the CCG you are in are not prescribing it just yet. Maybe in near future.
You can read your CCG notes on the libre online.

 

[maryrachel]

There was a criteria list. I cant remember all of them but HbA1c had to be above something like 58, no hypo awareness and hospitalisation for hypos. none of which i met. there were a few others such as repeated hypos requiring a pump which i did meet. spending every waking moment managing wild swings for hormones isn't a tick box for the NHS apparently.