FREESTYLE LIBRE

[Noemergencyexit]

Hi everyone,
I'm new to this forum thing and have a question to ask im type one diabetes and after 26 years I've got my diabetes in a good area. I have a few low blood sugars though the day but I always look after them and get them to normal. My diabetes doctor asked me if I would be interested in trying out the freestyle libre meter they've only just got they're hands on the meter. I use a freestlye neo something and it drives me mad. I was wondering if you use the freestyle libre and if so what do you think of it? If yo can please let me know what you think about it and if you would recommend it to others
Thanks for any help
Much love

Noemergencyexit

 

[therower]

@Noemergencyexit.com . Have a read around the forum, the Type 1 section and Glucose monitoring especially.
Almost everyone who uses a libre falls in love with them.
If you’ve got the chance to get one then take it.
I’ll tag @Scott-C . This guy is the go to guy with the libre and extra information.
And also welcome to the forum.

 

[Noemergencyexit]

Hi therower thanks thats what brought me to this forum thing I looked it up and well the information online only gives you a company’s point of view so I thought it would be better to ask the diabetic club as my partner calls it haha but thanks hopefully other who use them can share stories and well maybe I’ll go for thanks for the reply

 

[MeiChanski]

Hello, welcome!

If it is the freestyle libre sensors, I love them, despite price and the difficulties of getting hold of one. It gives extra information like a graph and over night patterns which a BM doesn't. so it is nice to see if your background insulin is working. With the patterns you can identity where you need more work to give a smoother control. However some times it is inaccurate when i'm going high or low, it is off around 3-4mmol/l, so thats when you need to do a finger prick to confirm it. But other than that, it's good for what it is. I'm excited about the freestyle libre 2 sensor which makes a noise like a CGM.

 

[Noemergencyexit]

Hi MeiChanski
Thanks for the information hmm my diabetes doctor told me they are 100% accurate but your telling me your is off by a bit so now I’m starting to wonder. They wanted me to do a cgm thing it goes into the stomach and well I said no I don’t like people touching my stomach it took me 25 years to do my insulin in my stomach I’m not really keen on the sensor thing like the idea of the machine but not the bit that goes into the skin

Thanks though for the information

 

[Noemergencyexit]

Hi there Knikki the thing I had a bad hypo the other day I went from 5.4 to 1.9 in the space of 20 min I smashed my head in got 6 stitches it’s was a bad April for me. I was told you got to change the sensor thing every 2 weeks how hard is that to do? I don’t like the look of sensor thing but my freestyle Neo meter is playing up I think the machine is fubar at least once a day it gives me an error message I was using the insullax model but it just stopped working

 

[Energize]

Hi @Noemergencyexit.com
Although I'm Type 2, I have used Libre system for a couple of years now, having to self-fund. The Libre is generally fairly accurate but when glucose levels are low then the Libre is often showing just a bit lower, and when high, shows a bit higher. Having said that, most users appreciate this slight discrepancy. So, only in the more extreme glucose levels, it's probably best to do a blood test (finger prick).

Certainly, the Libre will show you if you are heading up or down, whereas a finger prick will only tell you your level at that particular time. I suspect a Libre may have helped you deal with your hypo they other much sooner and actually alerted you to do something about it and prevented your collapse.

This image (below) isn't one of my scans but taken from elsewhere, just to show you how you get a graph, showing your trend, where you've been etc over the last few hours. There are also other aspects the Libre will show you, ie an average over the last week/month/30 days, divided into 4 sections ie midnight - 6am, 6am-12md, 12md-6pm, 6pm-12mn. Lots of useful info can be gained.

If you're being offered this on prescription, I would urge you to go for it. If, after 6 months you don't like it nor get benefit from using it, then don't continue.

Good luck

 

[Scott-C]

Hi, @Noemergencyexit.com , if you're being offered libre on script, go for it. There's lots of folks paying 100 quid per month for it who would kill to get it on script.

It does have quirks, like under-reading, but there's ways to sort those.

Let's imagine you bg test, it's 5, so you think, fine, it's 5, not hypo or hyper.

But 2 hrs later, because you can't see how yr bg is moving, you find yourself in the middle of a storming hypo and need to sort that.

Or 5 hrs later, going into yr next meal, test and it's 12, so yr then having to figure out a correction.

With libre, though, what happens is that because it's so easy to just wave the reader over the sensor instead of doing a bg test, you get lots of heads-ups on bg starting to trend out of range, so you can then make more informed judgment calls about whether to do a dextrotab or two at 4.5 to head off a hypo, or a unit or two at 7 to pin off a trace which looks like it's heading to the 9s.

With strips alone, we're kinda blind on what's happening with our bg, whereas with libre, we can see it and steer it. We can take small steps to avoid hypos/hypers happening at all, instead of dealing with them after they've happened.

Some of us are "blinging" our libre with blucon or miaomiao transmitters, which go on top of the libre sensor and send a reading to a phone app every 5 mins. That way, it's pretty much full on cgm: we can calibrate the readings to improve accuracy (many of mine are like 0.2 to 0.4 out), and the phone will ring to save you from nasty night hypos.

I live in an area which basically gives libre to any T1 who wants it. They've been pushing out numbers showing incredible differences in not only a1c reductions (high a1cs halving, decent a1cs doubling), but also increased patient "happiness".

It's pretty obvious why that's happened: managing bg on strips alone is a biyatch, managing it when you can see it moving and adjust it on the fly before it gets messy is way easier.

Here's some pics from the docs in my area about what they've found:

 

[JMK1954]

It is definitely worth trying a Freestyle Libre sensor. They are excellent for some people on this forum, but for me they were too inaccurate below 6 mml and above say 10mml. I cannot understand anybody telling you they are 100 accurate. It suggests the person speaking has no experience of having a patient use them and report back ! I don't think Abbot even claim that. The other big snag is that like many others, I had a skin reaction to the adhesive. I developed a bright red itchy patch on my arm exactly where the sensor had been. This took about a fortnight to clear up. Abbot are apparently changing the adhesive used to avoid this particular problem on the new version, which is not yet available as I understand. On a positive note, they are not painful or difficult to 'install' on your arm. I really wish they did work for me.

Edited to add - For me the Libre consistently over- estimated. This was also my brother's experience. His actual Hba1c from a clinic blood test was exactly 2mml less then the Libre predicted.

 

[Noemergencyexit]

Hi everyone thanks for the information they said I could use my smart phone to scan the sensor thing and not really need to carry the machine thing which would be useful if I’m out all day and can’t use the meter for what ever ie on bus ok I’ll give it some more thought and see thank you all for the information

 

[CondorX]

I would love to be able to get a Freestyle Libre even though I am Type 2, and self fund it, as my sugars fluctuate quite wildly at times and it would be helpful to get more of an idea just how much - but apparently they are unavailable currently with no indication of when they will be available again - manufacturers website are no longer selling them and can't get them anywhere - sensors still being sold to existing users though. Seems I missed the Diabetes Bus - the Low Carb Program costs a fair bit now but used to be free and Freestyle Libre not available for new users!! just my luck!!

 

[Noemergencyexit]

Ok thanks everyone for the information I’m not really keen on the machine as I don’t like change so I guess with time I would be ok with it. Can it really be used by a smartphone because when I’m out and it comes to blood test time and I don’t have the meter can my phone really be able to take a reading if you know please tell me thanks a lot everyone

 

[Energize]

Yes, if your Smartphone has NFC, it should read the sensor. I believe there are various sites on internet which identify which models/makes have NFC.

There is LibreLink and Glimp, both free apps to do this. There may be other apps but these are the two I know of.

Sensors are usually available from pharmacies / supermarket pharmacies. I'm not sure if Boots sell them now. I believe the issues re getting them from Abbott website is because they are /have been struggling to meet demand since available on NHS prescription (if fitting stringent criteria).

It's always worth enquiring at pharmacies if they have / can get them. If diabetic, you are VAT exempt too

 

[JMK1954]

Yes, you need to download an app for your phone, that's all. You will have to attend a session about how to use the Libre, run in my case at the hospital I attend. A representative from Abbot was there who actually uses it. She spoke confidently about it and that was why I decided to try it. I hadn't been convinced by the extremely vague info from other people. I had to sign up to attend clinic appointments to monitor Hba1c every six months. You get sent lots of emails from Abbot about controlling your levels etc. It's worth a try at least. I hope it works for you. You need to bear in mind that the figure on a Libre scan will not be the same as a blood test done a minute before or after. I believe the scan result is supposed to be an indication of where your blood glucose level will be in around 15 mins as far as I recall. Hope the info is helpful.

 

[Noemergencyexit]

Ok thanks I think I’ll have to have a more closer look into this the hospital I attend for diabetes couldn’t really give me anything on it just look it up your self which I found funny your trying to change me and your telling me todo the work..... ok thanks

 

[Scott-C]

Ok thanks I think I’ll have to have a more closer look into this the hospital I attend for diabetes couldn’t really give me anything on it just look it up your self which I found funny your trying to change me and your telling me todo the work..... ok thanks

There's a series of educational videos about it here:

https://abcd.care/dtn/education

There's not a lot to it really, if you can use a bg meter, you can use a libre, but it gives way more information.

To be honest, some docs have worn one for two weeks just to get the idea of it, whereas many patients have used them for several years, so it's no exaggeration to say the patients do actually much more about them than the docs do!

 

[Noemergencyexit]

That’s why I joined this forum because what the doctors are telling me isn’t matching up to what google says so I thought I’ll ask people with diabetes who might have used it at one point or something

 

[becca59]

As @Scott-C says many would kill to get one on prescription, me being one of them. Have been self funding for a year and a half now. Can not afford it, but would rather have that little bit of plastic on my arm than new clothes. Haven’t bought any since I started wearing one. That is my trade off. Go for it, if you hate it well what have you lost. But bet you don’t!

 

[Noemergencyexit]

Hmm you all make a good point which I knew this from the start upon asking this question every is up for it and if your lucky enough to get it then go for it this is something I can’t take easily because of my thoughts I’m lost in my own mind haha I can’t see why I don’t give it a go if I don’t like it for what ever reason then I tried it and I can say well I tried it and if I like it then well guess my team at the hospital really care for me haha thanks everyone it’s been really helpful thanks

 

[Noemergencyexit]

As @Scott-C says many would kill to get one on prescription, me being one of them. Have been self funding for a year and a half now. Can not afford it, but would rather have that little bit of plastic on my arm than new clothes. Haven’t bought any since I started wearing one. That is my trade off. Go for it, if you hate it well what have you lost. But bet you don’t!

You say you self fund it if I might ask how much is it costing you??