Type 1 Diabetics – Anyone got a FreeStyle Libre ?

Viewing 40 posts - 81 through 120 (of 184 total)
  • Type 1 Diabetics – Anyone got a FreeStyle Libre ?
  • Premier Icon tomhoward
    Subscriber

    I have to admit I’m not sure.

    Me neither, but given that most don’t inject insulin, I wonder what value it would have? Could be wrong though.

    Premier Icon svensvenson
    Subscriber

    flown with them (and the pump) multiple times. never had a problem, but I always announce it before I go through the “gate”. this usually involves getting a pat down on the other side. Which, on another subject, is generally completely pointless…

    The pump is actually really good for long haul flights as you can just raise your base level of insulin to counter the fact that you aren’t going to be moving much for a day. (unless obviously all your days are like that!)

    As far as I know it’s mostly type 1s using these. most type 2s I know only get occasional blood tests – although that might be either a French thing or people just being discreet. which makes me wonder: How discreet are other type 1s? I’ve always been totally open about it, pricking fingers, injecting etc in plain view. maybe not at the point of standing on a table to do it though. seemed to make sense to me, but I’d be interested in other points of view on this, or if people have really had negative reactions?

    Premier Icon tomhoward
    Subscriber

    Only negative reaction (apparently) I’ve heard of was from shibboleth (tells you all you need to know) on here. He couldn’t believe how dramatic his date was being about being type 1, supposedly rubbing his face in it as she proudly announced what she was doing.

    I’ve never had an issue.

    Gowrie
    Member

    Type 2 here and use them occasionally. Got one on now. They are fantastic. I don’t inject insulin, but using the Freestyle Libre I now know when my glucose is going to naturally high, what types of food send it spiking, when I can eat without so much of a glucose spike, whats happening through the night. Improved my situation considerably. I don’t get them on the NHS though, so self funding hence why I’m not using them all the time. Only downsides are cost and lack of supply.

    DickBarton
    Member

    Harry,take the insulin 10-15 minutes before you do now, should reduce the spike…might need to tweak the length of time but should help.

    I fly with it…don’t tell anyone but I do tell them about my pump.

    Doesn’t seem to show up on scanners and the detectors don’t beep when they pass over it.

    poly
    Member

    LD – don’t normally trigger metal detectors. Even insulin pump doesn’t always set it off. Not sure if they show up on my-wave body scanners (but I think they tend not to use those for kids).

    The law requires you check your blood. The libre doesn’t, it checks an enzyme then works out what your blood would be (I think). Means that the result you get on the machine is actually 5 mins old.

    Not quite – both use the same enzymes to measure glucose concentration. The difference is Libre is measuring in interstitial fluid not blood and there can be a time lag whilst the interstitial fluid catches up. Hence they say you should test blood before driving not just scan the sensor. In theory the guidance has always been to scan before you drive. It may be eventually they decide the two are close enough (after all if you are going to drive for an hour your snapshot is out of date with no idea of the trend) – but it’s still relatively new tech.

    Premier Icon Nalla
    Subscriber

    New DVLA guidance allowing the use of CGM including the libre should hopefully be released this month.
    It’s been delayed due to a large manufacturer of test strips cynically raising objections.

    Premier Icon Harry_the_Spider
    Subscriber

    First presciption for 4 sensors going in today. Let’s see what availbaility is like!

    Premier Icon Harry_the_Spider
    Subscriber

    …they had one sensor, which is now ours.

    The other 3 are on back order and should arrive next week.

    Premier Icon The Pinkster
    Subscriber

    First presciption for 4 sensors going in today. Let’s see what availbaility is like!

    You’re lucky – they’ll only prescribe 2 at a time here under Mid Cheshire.

    Premier Icon The Pinkster
    Subscriber

    Don’t know if anyone else has seen this but I’ve just received an email saying things appear to be changing for the better at the DVLA re. FrieeStyle Libre  –

    DVLA and DVA give Flash and CGM the green light

    Premier Icon kelvin
    Subscriber

    Still not available on prescription for my son. Needs to be hospitalised multiple times to qualify. The poor lad needs to be less diligent to deserve one.

    Premier Icon Harry_the_Spider
    Subscriber

    Still not available on prescription for my son. Needs to be hospitalised multiple times to qualify. The poor lad needs to be less diligent to deserve one.

    FFS. Fingers crossed for you and your lad that they sort it out.

    Was talking to a bloke with Type 1 at a kids party last week. He said that the Libre 2 will be available soon, hopefully this will reduce the demand and the price of the Libre 1.

    Premier Icon The Pinkster
    Subscriber

    That’s bizarre and surely really counter intuitive.

    I don’t know whether any of this information is useful to you in getting it for your son –

    NHS England announce end to Flash Postcode Lottery in April

    Flash Glucose monitoring Guidelines

    Apologies if I’m just repeating what you’ve already seen/read.

    Good Luck!

    fossy
    Member

    Son still waiting to see if Libre will be prescribed – we currently self fund where we can. Just flown with Libre and pump, and the only issues were Heathrow, where the security insisted on x-raying everything other than his pump (despite having the NHS/manufacturers guidance with him). Heathrow are known to be awkward.

    Premier Icon Harry_the_Spider
    Subscriber

    On a much more light hearted note, in our house the Libre is known as the “Bibble”.

    Premier Icon tomhoward
    Subscriber

    I’ve just had to take mine off after 6 days use 😕, evidently they aren’t very friendly with MRI scanners…

    *shakes fist*

    DickBarton
    Member

    Take it off or was it ripped off by the machine?

    Premier Icon tomhoward
    Subscriber

    Took it off first (not my first rodeo, the first time the nurse noticed it just as I was going in, I’d forgotten I was wearing it…)

    DickBarton
    Member

    That is annoying…did you chance your arm and called Abbott up to claim it lost it’s stick? 😉

    Premier Icon tomhoward
    Subscriber

    Nah, they got an email bollocking from me a few weeks ago, after I waited 3 weeks for the sensors to be dispatched. Meant the next lot was dispatched straight away… meeting with the GP on weds. I’m not leaving the room without a prescription (been self funding for 4 years now)

    scud
    Member

    Well after being told that the Libre system will finally be available on prescription here in Norfolk from April 1st…. they were half right..

    It will be available for under 5’s, pregnant women and under certain circumstances such as being blind, it will not be available to my 9 year old daughter.

    So at present we are privately funding it, and paying over the odds at around £70 a sensor, as Abbott aren’t taking on new customers and we are struggling to order via supermarket for a fair price, so have been getting sensors at a mark up via Amazon and ebay, and we seem to have a sensor failure rate of about 1 in 3 or 4, so on average i’m paying £140-210 a month.

    Whilst i don’t mind this for my daughter, we went for her most recent T1 team visit on thursday and they are now advising that Libre is not the best system for her, she needs to be using Dexcom 6.

    So this will now be about £200 a month, plus she needs her own phone for the Dexcom as a handset for school etc.

    So we have gone from hoping that we going to be £150-200 better off a month (which would be nice having been made redundant 3 times in 5 years), so now being told an even more expensive system is the way forwards…(that and being told that we should not be using “nice” sweets and drinks are hypo treatment, we must gluco-tabs or gels – we had been using jelly babies or orange juice)

    Sorry, rant over, but it is really frustrating when all you want is best for your kids.

    Premier Icon Harry_the_Spider
    Subscriber

    FFS scud. Really. What a mess.

    When I started this thread I honestly thought that my own 9 year old daughter’s treatment was the norm, but now it sounds like it is the exception.

    What was wrong with the sweets and drinks? We use Humzingers, 9g of carb per stick IIRC that kicks in within 10 minutes.

    Premier Icon tomhoward
    Subscriber

    we must gluco-tabs or gels – we had been using jelly babies or orange juice)

    I’d, respectfully obvs, tell them to bollox. What you use doesn’t matter, as long as it works, and works quickly. I use a handful of Haribo gold bears, as it’s nice to have something nice when you feel like shit.

    Premier Icon Harry_the_Spider
    Subscriber

    When they tell my daughter something that she doesn’t want to hear she goes all “Wednesday Addams” on them. Helped by the fact that she looks like Wednesday Addams.

    Premier Icon kelvin
    Subscriber

    so now being told an even more expensive system is the way forwards…

    The Dexcom is far better, they are correct… we use one in the school holidays. Too pricey for year around self funded use for us, but then to a lesser extent, so is the Libre.

    Premier Icon tomhoward
    Subscriber

    HtS, earlier:

    Premier Icon tomhoward
    Subscriber

    So, just back from the GP…

    TH:’I’d like the Freestyle Libre sensors on prescription please’
    Doc: ‘Fine, have you had one from us before?’
    ‘Nope’
    *types away*
    ‘Done, do you need some now?’
    *Surprised* ‘err, not right now, but will do in a couple of weeks’
    ‘Fine, yet us know and we’ll get it sor….ooohhhh hang on a minute…’
    ‘?’
    ‘Its showing as a red flag for Leeds, I’ll have to check it out and get back to you’
    ‘Ok, well I’m aware that there I have to fulfil a criteria to get it, and I do?’
    ‘OK, I’ll pass that on and give you a call when they get back to me’

    What do we think boys and girls?

    Premier Icon kelvin
    Subscriber

    I think you live in the wrong bit of Britain… fingers crossed that you can beat the system though…

    DickBarton
    Member

    The sensors that fail…are you contacting Abbott about them? They should send a replacement and ask for duff one back, FOC.

    Premier Icon tomhoward
    Subscriber

    I’ve never had one fail, in 4 years.

    DickBarton
    Member

    I’ve had 3 fail and about 4 come off…come off as in me being careless and hitting it against a door frame.

    That is over about 3 years use.

    Premier Icon Harry_the_Spider
    Subscriber

    First HbA1c since getting the monitor.

    6.7

    Get in!

    Premier Icon tomhoward
    Subscriber

    Bravo! what was the monitor showing/estimating? it was fun for me to take screenshots each time it dropped a point 🙂

    In other news, the NHS will start paying for mine, once I’ve run out of the sensors I’ve bought myself.

    You said you got a prescription? my consultant seemed to think I just rang abbott and used the NHS’s account to get them? (side note, its that NHS account that has meant everyone with their own has been struggling to get hold of them…)

    Premier Icon kelvin
    Subscriber

    It’s normal for your NHS trust (consultant) to set you up an account with the supplier, rather than it being sorted via GP prescription. Good news for those of you getting this kit. Still no go for my son.

    Premier Icon Harry_the_Spider
    Subscriber

    Bravo! what was the monitor showing/estimating?

    Don’t know. Will have a look.

    In other news, the NHS will start paying for mine, once I’ve run out of the sensors I’ve bought myself.

    Good stuff!

    You said you got a prescription?

    Yep. From the Diabetes Team for the trial, then from the GP afterwards. I have 100% faith in the GP ****ing it up though.

    scud
    Member

    We are still unable to get the Freestyle Libre on prescription for my 9 year old daughter, here in Norfolk they are still only allowing them on prescription for special cases, under 5’s, pregnant ladies, blind etc….

    So we are still having to pay the full amount for it, so we are now looking at the Dexcom 6 system, which has come down in price a little and is a true CGM

    Premier Icon Harry_the_Spider
    Subscriber

    I honestly find this utterly disgusting. Really.

    Everyone should have access. You would have thought that the buying power of the NHS would make them so cheap that they were available to all. Especially when you offset the cost against that of the test strips for an old style monitor.

    14 x 5 x 20p* = £14 over 2 weeks, and the libre sensors can’t cost them that much more.

    I feel lucky to live where I do.

    *Could be wrong on the 20p per strip.

    Premier Icon tomhoward
    Subscriber

    The libre costs the NHS around £40 a fortnight, IIRC. Hence you can argue that if you are testing lots, it’s cheaper to use the libre.

    NHS in not forward thinking shock…

Viewing 40 posts - 81 through 120 (of 184 total)

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