Type 1 Diabetics – Anyone got a FreeStyle Libre ?

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  • Type 1 Diabetics – Anyone got a FreeStyle Libre ?
  • Premier Icon Harry_the_Spider
    Subscriber

    My 9 year old daughter has just been offered one. What are your experiences, either your own or your kid’s ?

    She is a bit worried about “the thing on her arm”.

    We inject rather than pump and HbA1c has always been around the 7 mark.

    Premier Icon tomhoward
    Subscriber

    I have one, changed my life.

    I was skeptical about the thing on the arm, you forget about it 5 minutes after putting it on. The best bit for me is having the app on my phone, so i always have that with me, which makes testing hourly a reality. showing what your sugars have been doing over the previous 8 hours is great for knowing what you’ve been doing overnight too, so you can adjust insulin dosage accordingly, without having to stay up all night

    got my HbA1c down form 12+% to 6.1 in 6 months. people will say its not that accurate, compared to a blood test (its 5 mins behind a blood test) but ive never had an issue, never more than .3 different.

    Im still paying for it, but i don’t mind, as for me by far the worst bit of diabetes is finger pricking, (i was diagnosed age 7, in the early 90’s, the finger prickers were pretty savage…) so for that alone its worth it.

    Premier Icon dmorts
    Subscriber

    My wife has one and thinks it’s great. It identifies trends rather than exact BG. It helped her improve her control, and still is helping. Still need to finger prick before driving (ok for you for now!). She uses the Libre reader BG monitor too. My wife’s HbA1c is hovering in the pre-diabetic range now.

    A work colleague also has one and he’s says it annoys him because it shows how bad his control is sometimes. He’s stubbornly refusing to do the DAFNE course though. (Doing DAFNE is supposed to be a condition of getting the sensors here so not sure how he blagged it).

    Premier Icon tomhoward
    Subscriber

    A work colleague also has one and he’s says it annoys him because it shows bad his control is sometimes. He’s stubbornly refusing to do the DAFNE course though. (Doing DAFNE is supposed to be a condition of getting the sensors here so not sure how he blagged it).

    thats whats kept my control good, all the high reading show up, and stay recorded and in any graphs for 3 months, so you are constantly trying to get the spikes to disappear, and keeping you average as low as possible.

    you can just buy the scanner and sensors, no need for dafne, £100 a month

    Premier Icon BoardinBob
    Subscriber

    My missus has one. She was reluctant at first but I think it’s given her much better control. As above, it shows trend and how quickly things are moving in any direction so she can react better to highs and lows

    DickBarton
    Member

    I use it and rate it highly…a great tool. Has improved everything for me as bloods are better (not perfect but better).

    Only a couple of issues I’ve found…stops working in the cold – it keeps the recordings but it won’t send to phone until it has warmed slightly.

    I’ve had a few that have lost their stick – all been replaced but inconvenient when they have fallen off.

    Apart from those, it is really good.

    Premier Icon BoardinBob
    Subscriber

    Also worth mentioning that it won’t work with your phone unless it has NFC

    Premier Icon tomhoward
    Subscriber

    I’ve never had one fall off tbh, though i make a bit of an effort not to get it wet (easier in a bath than shower!)

    Sorry, Im properly evangelical about these. if they had been available when i was younger, i wouldn’t have knackered eyes, or be in a constant battle to avoid my toes being cut off now.

    poly
    Member

    Mrs P is a big fan.

    Is HtS Jnr concerned about the “cyborg” feeling or bumping it?  If the former I think Mrs P was mostly over that by the second time (and is now on a pump which is probably a bigger leap).  If its the physical sensation of a “needle” being in all the time (there isn’t actually a needle) then that never seems to be an issue.  If its bumping it then I think Mrs P has broken one sensor in a year.

    I’m fairly certain that if Mrs P got told she’d have to go back to paying £50 a sensor for them she would.  I suspect HtS Jnr will just be a bit too small to directly understand and notice the benefits it brings in terms of understanding sugar levels etc – but I think she’ll soon see it means less finger pricks, and a more relaxed mum and dad.

    As far as I know the only people who have ever mentioned it to Mrs P are people who know what it is, “oh, you’ve got a Libre – do you like it”.  Obviously that is different from in the playground, but if my kids and their friends are anything to go by modern children are much more accepting of differences than 30+ yrs ago.

    DickBarton
    Member

    The phone software uploads to a website, which the hospital can see. There is a supporting app for relative’s phones so they can also see the results.

    It’s a must, it’s very good for seeing what’s going on through the night, also easy to track trends.

    As for cost, they last 2 weeks and get the right amount to last for a year on prescription, if we use to many in the 12 month, say misuse it’s tough which is fine by me given the cost.

    with regards to h1bc, the pump made a big lifestyle change, this has made a bigger change

    Premier Icon bruk
    Subscriber

    On a slightly different note we have used these on diabetic dogs to get a clear idea of how they are responding to insulin and they are a vast improvement  over doing serial blood glucose curves. Diabetes in dogs is mainly type 2 equivalent and control is often challenging.

    Not had issues with dogs scratching then off or showing discomfort or pain with them either.

    Premier Icon Harry_the_Spider
    Subscriber

    +++Update+++

    Just had the call to pop in tomorrow and get it fitted.

    A question… I want to be able to remote monitor her so which App do I need? The App Store has several and I don’t know which. I’d like to have it pre-loaded before we go for the fitting.

    Also, my darling little daughter is a Karate Brown Belt, will she need to cover this thing up when training (tubular bandage?), or can it take a knock?

    fossy
    Member

    Been using the libre for over 18 months, so self funded and ruddy expensive. They are good – my son is 18 now, but it has helped ‘at times’ to keep his blood levels down.

    We even has a ‘bluecon’ device that automatically read the libre and sent it to his phone, so it had automatic alarms. Worked well, but he’s been in ‘denial’ for a long time and has been running high too much, despite being on a pump. Just a teen being a ‘teen’.

    If it’s funded, give it a try. It’s a little inaccurate if bloods are very high or low, but the ability to see how the blood readings are tracking is good, and you can take action before they get too high/low.

    fossy
    Member

    The freestyle app can be used for remote, but she will need a smart phone to scan it with (uses NFC) – you start the libre with the scanner, and then you can scan the libre with either the phone or sensor. You then put the companion app on your phone.

    I spend some time getting nightscout set up so we had real time remote monitoring with the ‘bluecon’ device.

    She will need to scan, and school might be a bit funny about having a mobile.

    Premier Icon Harry_the_Spider
    Subscriber

    I’m quite excited about the prospect, if that is the correct thing to say, but my daughter couldn’t give two s**ts because that is the way she is! She’s a little concerned about it being stuck to her though.

    I’ve got to learn it fast, because at 9:00am the day after I’ll be training up the SENCO at school.

    scud
    Member

    My 9 year old daughter has the Omnipod insulin pump and we have the Freestyle Libre off and on.

    I do recommend having the pump over injections also, that gives greater control too, in that you can extend a bolus of insulin to be drip-fed over up to an hour if the food being eaten is high fat or high protein, plus you can give far smaller doses than you can injecting, especially important when young.

    if she is doing karate, then i would look to place some tape over it when doing sport, and make sure that the sensor is perhaps on the back of her arm, also forewarn others in the class not to grab her arm maybe?

    The only issue we had with Frestyle Libre was that here in Norfolk it is not available on the NHS, and because so many were sold to NHS, if you did not register with Abbott the manufacturer before a certain date, you cannot even buy them privately. We have trying to buy via cheaper sources like Asda, but have often had to pay a 20-30% uplift on what they should cost per sensor from places like ebay and amazon

    Premier Icon Harry_the_Spider
    Subscriber

    Not bothered about scanning with a phone. I just want to be able to see the results remotely so I can discuss with school if she is high or low.

    Premier Icon Harry_the_Spider
    Subscriber

    Ours is on the NHS. For the first 6 months we get the prescription for the sensor from the Diabeties Team at the hospital then, if we can be seen to be using it correctly, the prescription passes to the control of the GP surgery

    scud
    Member

    The Freestyle Libre does have an associated app of it’s own, plus you can get a handset, so school has the actual handset, and we have the app on phone.

    It is good as it used to always be about the “score” hba1c, but the emphasis is shifting to the actual time spent “in range”, and making sure that meals have a good balance of carbs, fats and protein, so that the fats and proteins slow down the absorption rate of the carbs giving less of a peak in BG following a meal and giving the insulin time to work on the carbs.

    Premier Icon Harry_the_Spider
    Subscriber

    Another question…

    How do you go about waterproofing it for prolonged periods or for wearing under a wetsuit? Is it as simple as a big plaster?

    scud
    Member

    Hi Harry.

    System is waterproof, but doesn’t like being knocked. So my daughter has been fine swimming and in the bath etc with it. But putting on wetsuit etc, would be fine with the water, just need to be careful not to knock it too much, there are companies that specialise in making arm bands for them, and just things like stickers to on on them to brighten them up.

    Now my daughter is 9 she is fine with it, all her friends all know about her T1, but when she was younger she liked to personalise her insulin pump and the sensors, this was one company:

    Shop

    poly
    Member

    She will need to scan, and school might be a bit funny about having a mobile.

    Interesting issue. I’d think even the most conservative school would see the benefits. The issue would be if the pupil is tempted to abuse any special privilidge and the phone was confiscated (even temporarily). It *may* make more sense at school to use the proper Libre scanner but then there is no remote monitoring. I guess that will depend on the school, the pupil etc. You may want to be able to “shut off” sometimes when she is at school knowing that it is more their problem (and you may not want them to assume you are remotely monitoring so they can shirk their responsibilities).

    The Freestyle Libre does have an associated app of it’s own, plus you can get a handset, so school has the actual handset, and we have the app on phone.

    Be aware if you fit a new sensor and scan it with a phone first you can only read it with a phone – it won’t pair to the scanner. If you use the proper scanner first you can then read it with a phone as much as you like – worth bearing in mind if you plan to leave the proper device at school – you would really want to change sensors there which is a PITA.

    How do you go about waterproofing it for prolonged periods or for wearing under a wetsuit? Is it as simple as a big plaster?

    The Karate will be more of a challenge. I’d want to put something more than just a tubigrip over it (maybe more like a neoprene sleeve) although I’ve never done Karate in my life so may be overestimating the issue. For one off swimming etc they are fine. If you are surfing and in the water for several days then eventually the sticky layer will start to peel off (can also be an issue if the arm is damp or sweaty when installed) – but you can “reinforce” this with some micropore or similar.

    Premier Icon Harry_the_Spider
    Subscriber

    Thanks. This is all new to me. Didn’t realise that it has to be scanned with a phone to share with other phones. She doesn’t have a phone, so she will by default be using the monitor.

    Karate shouldn’t be an issue as there is no “grabbing” at the upper arm. A sleeve under her gi will do. I’m more concerned about holidays as she spends a lot of time in the sea on her board.

    I’ve also read that they are only waterproof to 1m, which could be an issue with swimming lessons when she has to fetch a brick off the bottom. A real concern or just the manufacturer being cautious?

    poly
    Member

    Harry – Mrs P has spent days in the water with hers and no issues. She’s not been picking bricks off the bottom, but I expect that is about the standards they test to, rather than being prone to sudden failure at 1.1m. I think she has had one sensor fail for no obvious reason and Abbott replaced it FoC.

    If you do decide to get her a phone then check it will support it – AFAIK it needs NFC which some very cheap Androids will not have. Once she reaches the age where she goes off to friends on her own etc you will probably really appreciate that feature, at 9 it might just mean you never get a rest from worrying about her!

    Premier Icon Harry_the_Spider
    Subscriber

    Thanks.

    She’ll get a phone when she goes to high school. There’s no need for one now.

    I don’t worry about her TBH. She’s a sensible kid and school are very good with her.

    whytetrash
    Member

    Supposed to be starting with these next week…. really can’t wait! Only concern is how much of a bump it takes to dislodge it as do have to climb into some confined spaces with work? Mate had one on for his stag do and it was fine for coasteering and surfing, we were jumping of some high cliffs so defo exceeded 1m depths with no issues!

    latham2104
    Member

    Hi Harry, my 9 year old son has been wearing one for two years. Just got it on the NHS after self funding for two years.

    Can honestly say it’s so worth it, both for us, but more importantly him. It adds and element of spontinaity into food for him; makes sport easier; makes going round friends house easier and genuinely has improved his life and coping with T1.

    First few were painful to put on apparently, but I think that was psychological. We just whack them on no fuss now.

    As for sport, my lad does everything, never had one come off…we use the cohesive elesticated bandage, like this:

    https://www.wilko.com/en-uk/wilko-blue-cohesive-bandage/p/0348502

    No issues with swimming…not come off as long as you use the bandage above.

    Apps…this is a mind field. We use the Librelink which which is a smart phone scanner, and then I have the LibrelinkUp app which sends the data from the Librelink. My son doesn’t have a smart phone yet, but when he does, he’ll scan with the Librelink and then we will see it on the LibrelinkUp. Obviously this needs to be scanned, it doesn’t constantly monitor.

    Remember, if you’re getting in the NHS, you’ll need to use the scanner as well to tick their boxes for funding you.

    You can get the Meow Meow, which sits on top of the libre,and that will feed to a phone and send data to another phone live. Again, son doesn’t have a smart phone yet, so we are waiting.

    If you want a chat regarding kids using them that are similar age, send me a pm.

    Premier Icon Harry_the_Spider
    Subscriber

    Thanks all for the advice.

    We had it fitted yesterday afternoon, and after the first 20 minutes there hasn’t been a word of complaint. Quite the opposite actually as I didn’t have to shout “EMILY, WILL YOU DO YOUR BLOODS” about 15 times before we ate last night. I just walked up to her and POW, done. I think I may have even said “POW”.

    The data is fascinating. Saw a spike up to 15 an hour after food, that dropped down to 8 shortly after. This is the sort of data that will improve control.

    DickBarton
    Member

    You don’t need to use the scanner unless your NHS unit specifies it for some reason.
    Ask for the hospital code and then download Diasend. It will connect to your Libre account and upload your sensor readings to the cloud. Your hospital should have that cloud set and they can see all your scans whenever they like.
    Abbott do an app that shares your scanner results…the other people install it and link to your Libre account and they see what is scanned.
    All only works with a phone with nfc and data…otherwise it won’t upload.
    It takes a reasonable amount of a knock to remove it from the arm…face-off and it won’t come off, but side on and a proper hit and it’ll be off.
    I’ve caught it on door edges a few times, but general day-to-day stuff and biking/trailbuilding/climbing and swimming have all been no bother at all.

    aphex_2k
    Member

    I’m about 6 months in to a Medtronic pump and CGM. Bloody love the thing. Apart from it beeping when im high. Beeping when I’m low. Beeping when the CGM needs changing. Beeping when I need to calibrate. Beeping when I need to do a set change.

    Aside from that… Pump/CGM from MDI is sweet. It’s not cheap. But hypos are rare now (and really only happen when I don’t heed the “approaching low level” beep but that’s my fault not the system. I wear my CGM on my belly (left) and cannula on the right. Doesn’t get in the way when I’m in the sea, on the bike or at muay thai. Occasionally if the kids are a bit play-fighty the sensor gets knocked but overall I’ve been pretty happy with the whole system.

    I’m not sure how often other systems update, but for me, seeing a graphical output on my pump has been a real insight on how foods spike my levels, even after 20 odd years of being a diabetic on insulin.

    Premier Icon svensvenson
    Subscriber

    I’m currently 2 years in on the freestyle libre and 1 year in on the omnipod. not sure which has made the biggest difference, but it feels like the first bit of progress in about 20+years of sticking needles into myself! The pump has stabilized my eyes, so no more in your eye injections, which are about as fun as they sound.

    I’ve managed to knock a couple of freestyle captors off, but generally on the back of the arm is good for me – survives Aikido as the others know about it. I tried on my belly (plenty of fat there!) but I already have the pump there and it just felt like too much.

    the most useful part for me is the arrow telling you what going on, rather than just number 150, you get 150 going up, or down, or in freefall, whatever, it definitely helps to control what happens next. It’s also waaaaayy quicker than getting all the kit to make holes in your fingers. I used to buy a pair of sensors before appointments with my endocrinolgue, just so we would have some data to look at, but now they’re free in france…

    and yes they don’t work in the cold – ie riding to work in minus 4.

    I haven’t used my phone as a reader, mainly because up until recently I always had relatively crappy hand me down phones, with suspect batteries.

    So if I’ve under stood this right, you have to scan with the libre reader first, then you can use our phone or the reader? or just your phone? there was some point about where the data winds up that I was told about, but I can’t remember exactly what it was.

    curious, what is DAFNE exactly? is it the method of calculating your carb intake?

    I will say that now they’re free in france I’ve started seeing them (in the summer anyway) on more and more people – I had no idea how many people were type 1!

    Premier Icon tomhoward
    Subscriber

    Just a word of caution for folk self funding, supply of the sensors isnt great at the mo. They let you place an order of 3 sensors, every 25 days (supposedly to be able to manage the supply) however lead time on new orders is increasing, I’ve been waiting 14 days (website says 5-7 working days) for an order now, last one was 10 days, rang up to check where it is ‘we’ve just had stock into the warehouse, so it will be dispatched soon, maybe the middle of this week’ ‘it’s Thursday?’ ‘Ah yes, maybe tomorrow then’

    A wonderful insight into post March 29th Britain, perhaps. Can’t wait.

    Premier Icon Harry_the_Spider
    Subscriber

    1 in 200 are Type 1.

    DAFNE = Dose Adjustment for Normal Eating

    Been type one for 3 years (still noob really still learning)

    DAFNE – was a massive help allow me to eat and adjust what i wanted (Carbs and cals app was great)

    As for the Freestyle, They are fantastic way easier to just check see where your at and carry on or adjust accordingly.i will definitely allow you to keep a tighter control on sugars and allow you to see patterns better (it did me)as you can scan as much as you like. great for when you active like ski ing or cycling don’t have to physically stop take gloves of prick wait etc etc.
    just scan ,take action and go.

    Only thing at the start takes a few hours for numbers to settle and towards end of there life some times readings can be a bit varied, so whilst its great dosnt replace the finger prick

    As some people have mentioned the extra sticky pads you can get for them help keep them on and you can get funky patterns colors (make it fun)

    Instagram is a wealth of knowledge just #libre and there people putting them in all different places for inspiration, usually mine are on the back of my arm and to be honest don’t notice it till i shower and its like oh there it is.

    Also, not been mention yet you can get ‘Miao Miao’

    Miao Miao

    its additional add on that attached to the libre and turns it into a CGM thats can blue to live readings to a phone/watch and set alarms i believe

    MiaoMiao Smart Reader

    Initial cost is expensive, but is rechargeable and reusable unlike (dexcoms)

    Hope this helps

    Liam

    Premier Icon svensvenson
    Subscriber

    DAFNE not quite what I thought…. (hums to himself as he starts looking up yet another google page… )

    they ran out of stock in france too last summer, relatively soon after they made them “free”, I think they weren’t ready for the increased demand, seems ok now though.

    Brexit rears its ugly head here too. Aren’t they made in Ireland? backstop? border? arrgghh sorry wrong thread!

    Premier Icon Harry_the_Spider
    Subscriber

    Hmmm… availability eh?

    Our specialist nurse told us yesterday that production of sensors had been ramped up due to the increased demand of them being available on the NHS, which had led to a QC problem with some of them.

    She has also given me 4 prescriptions, each for 4 sensors.

    After March 29th I’ll be standing guard over my stash with my heaviest Bombers.

    DickBarton
    Member

    The sensor apparently has only been approved to be used on the rear/outer upper arm. Anywhere else is not assured of the settings. Likewise, it isn’t approved for driving, you still need to finger prick test for driving.

    Premier Icon svensvenson
    Subscriber

    here we’re told to stick it on 24 hours before you activate it, which is supposed to get the reading more precise from the start. Is that the advice in the uk too?

    I have to say that apart from the very rare occasions that I’ve been testing for ketones I haven’t pricked my finger for sugar levels more than about twice a year. If you’re scanning enough the fact that you can see which direction your heading makes it kind of redundant – in my opinion obviously!

    Premier Icon Harry_the_Spider
    Subscriber

    Yesterday we were told to give it an hour. Actually, our monitor counts down from an hour once you register the sensor. I don’t know if this is a new development or whether they all do it. I only have 18 hours experience with it!

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