Type 1 Diabetics – Anyone got a FreeStyle Libre ?

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  • Type 1 Diabetics – Anyone got a FreeStyle Libre ?
  • scud
    Member

    We are struggling again to find sensors, cannot buy from Abbott as they will not sell to new customers now due to backlogs, you could buy them cheaply at Asda and Superdrug, but neither has stock near us, and i have to go back to paying £70 for one sensor this morning!

    Seems about right for this country at the moment, that healthcare is still a complete postcode lottery. Interested to see if the promise that the NHS makes them available to all in April comes through with the shitstorm we could be facing elsewhere.

    Hard isn’t it when all you want to do is the best for your kids?

    Premier Icon svensvenson
    Subscriber

    they all count down from 1 hour when you kick them off, I try and time it strategically so that it doesn’t mess with eating. Interesting that the 24 hour “preload” wasn’t mentioned. It might be something that they’ve just figured out for themselves in Avignon?

    On a kind of side note, if I had a kid with diabetes I think this is a real advantage for them. so much less hassle/painful than stabbing your fingers.

    Premier Icon tomhoward
    Subscriber

    On a kind of side note, if I had a kid with diabetes I think this is a real advantage for them. so much less hassle/painful than stabbing your fingers.

    This is why i’m so committed to recommending them. As a 7 year old diagnosed in the early 90’s this was the machine used to extract blood from ones fingers. (side note, they used that machine to do a proper (normally from the vein) blood test, when i flat out refused to let the stick the needle in my arm, aged 8. Imagine filling a vial with the amount of blood that comes out of a finger prick each time…)

    as you can imagine, the depth at which it pricked was variable, meaning it ******* hurt. as a result of this, after about 15 I simply stopped checking my blood, and just doing insulin based on how I felt. this led to me having a hypo, but because i was so convinced i was high, I ended up giving myself well over 100 units of fast acting insulin trying to ‘treat’ it. The paramedics were less than amused…

    its only been in the last 5 years or so that I’ve been taking it seriously (I’m 33) but its only in the last 3 years that the result of the previous ignorance is bearing fruit. Docs are initially somewhat baffled that I’m having neuropathy/ulcers in my feet, despite having a HbA1C of 43 (pre libre, it was north of 100)

    So yeah, it might not be 100% accurate all the time, but for me, its worth its weight in gold.

    (follow up, i’m now fine with needles in my arm…)

    Premier Icon Harry_the_Spider
    Subscriber

    ^That looks horrific!

    stoddys
    Member

    I so want one but can’t afford to self fund, I’m 50 so not a youngster,has anyone had experience in getting one on the NHS?
    I hear the criteria varies I’m in Essex if theat helps.

    DickBarton
    Member

    I loved that machine…an improvement over previous items!

    Premier Icon tomhoward
    Subscriber

    As alluded to above, they should be easy for everyone to get come April. I’m skeptical. In Harrogate (were i see the specialists) they are available if you pass certain criteria (which i do) but in Leeds (where my GP is) its a blanket no for now.

    DickBarton
    Member

    It takes 1 hour for the sensor to sort itself after you add it to your arm – it is an enzyme so I’m assuming it takes that time to start reacting – apparently it takes up to 24 hours for the reading to gain full accuracy.

    Premier Icon svensvenson
    Subscriber

    that explains why in France you’re recommended to stick it on when you get 24 hours warning, so the enzyme gets working properly before you start relying it on it for dosage.
    thanks for that.

    Premier Icon Harry_the_Spider
    Subscriber

    I so want one but can’t afford to self fund, I’m 50 so not a youngster,has anyone had experience in getting one on the NHS?
    I hear the criteria varies I’m in Essex if theat helps.

    Ask! We were offered it on the NHS for the first time only last month when we went for our regular quaterly check. The latest batch only arrived this week.

    Things may have changed in the very recent past.

    Premier Icon Harry_the_Spider
    Subscriber

    School have just phoned up.

    Apparently my daughter has just stood up in front of the entire class and explained what the new thing on her arm is. She did a Q&A and a demostration of what it does. I’m made up, as recently we had an incident where one lad was calling her “Emily Blood Test”.

    They all know now. There is no excuse for ignorance.

    scud
    Member

    Really sympathise there Harry.

    We have been so lucky in that my daughter goes to a little rural school with only 14 in her class. They all know each other inside and outside of school and we had a man come from Diabetes UK who was a volunteer and he spoke to the whole of the school (all 80 of them) and he was really good explaining to all of them what T1 was and what Freya had to go through each day, and the kids really listened and have been really good for her.

    We have been forewarned though that going to “big” school which is much larger, she may get a bit lost there.

    What i hate is the number of comedians and TV shows you see where the word “Diabetes” has become a punch line to end a joke about fat people or eating too many sweets and T1 people get that same slight stigma attached, i have a number of people say to me “shouldn’t have given her so many sweets”!

    Worst i ever had was taking my daughter swimming when an old dear decided to shout openly to me about abusing my daughter as you could see the needle marks on her bum..

    Premier Icon Harry_the_Spider
    Subscriber

    Really sympathise there Harry.

    Thanks, but you don’t need to.

    My little Emily is absolutley bullet proof. She’s had it since she was 20 months and as a result nothing phases her.

    The little stunt today was her way of saying “I’ve got this stuck to me. Deal with it.”

    With you on the comedians thing BTW.

    By the time she hits High School she’ll have earned her Black Belt. Piss takers beware.

    fossy
    Member

    Nice on Harry.

    My son is having a bit of a teenage ‘meltdown’ with his Type 1 at the minute, not testing enough, eating too much without measuring/weighing cards and not taking insulin. His HBA1c hasn’t been great this last 6 months. It’s also not a great time for a melt down as his insulin pump is up for renewal, and if it doesn’t get renewed, he won’t get another as an adult – the diabetes team are being a bit harsh, but if he doesn’t get a replacement, I can see it tipping him over the edge.

    He is seeing the diabetes team’s psychologist monthly.

    Premier Icon tomhoward
    Subscriber

    have a number of people say to me “shouldn’t have given her so many sweets”!

    I’ve had people say that (or words to that effect) to me on here. More from a lack of understanding than any malice, but still.

    Premier Icon Harry_the_Spider
    Subscriber

    My son is having a bit of a teenage ‘meltdown’ with his Type 1…

    Ooof.

    Premier Icon The Pinkster
    Subscriber

    In Harrogate (were i see the specialists) they are available if you pass certain criteria (which i do)

    Same here in Cheshire. Don’t be fooled by the ‘available to everyone’ promise from march/April this year either, as the guidelines state that you will still have to meet specific criteria when they be come available, e.g. currently performing regular glucose testing (IIRC it was >8 times a day but trying to find the guidelines doc to confirm).

    @stoddys – I’m 52, soon to be 53, have been type 1 for 43 years next month and have been part of the Cheshire CCG trial for about 9 months now and have found it a great improvement on previous methods or glucose monitoring.

    Still have to do pick tests before driving , as is the law at the moment but DVLA have been told to get their fingers out (sic) and change their rules to allow Flash monitoring as a test prior to driving.

    My balance has never been a huge problem but in the past 12 months it has improved significantly as the Libre has helped where issues maybe or are occurring and it has helped me drop from 15st 9lb in Jan last year to 13st 7lb this Jan, which can’t be too bad.

    DickBarton
    Member

    I’m probably in the minority but I find the jokes amusing and crack them myself as well…

    Premier Icon The Pinkster
    Subscriber

    What bugs me most re. the T1 v T2 thing is when some news outlet or other does a report about diabetes,diet and health but don’t mention that they’re talking about T2, which it invariably is.

    Premier Icon Harry_the_Spider
    Subscriber

    That reminds me… once Emily was offered Haribo at a party and turned them down.

    “Awww is that because you are Diabetic?”

    “No, it is because I’m vegetarian.”

    Premier Icon superdan
    Subscriber

    It calibrates a bit over the first couple of hours, it can read a bit funky at first.
    I’m using a Miao Miao on top to give the live readings to my phone, this has been a total game changer for my control, alarms for overnight lows, and to read out to a garmin Fenix watch via xdrip+ so I can see my levels while riding. This would allow you to do the remote follow stuff too.

    I had a lot of trouble with sensors falling/getting knocked off (around 1 in 3), but since starting to use the Miao Miao ive been using Kineso (sp?) tape to cover the Libre sensor and the MiaoMiao, and haven’t failed one since Oct.

    Premier Icon superdan
    Subscriber

    What i hate is the number of comedians and TV shows you see where the word “Diabetes” has become a punch line to end a joke about fat people or eating too many sweets and T1 people get that same slight stigma attached, i have a number of people say to me “shouldn’t have given her so many sweets”!

    I quite like the Ed Gamble take…
    ed-gamble-on-being-called-a-diabetic-comedian-live-at-the-apollo“>Ed Gamble

    Premier Icon kelvin
    Subscriber

    I’m skeptical.

    You are wise. My 12 yr old has been turned down… again… it’s a lottery.

    meet specific criteria

    The criteria my son fails on is that doesn’t get hospitalized often enough… but that’s because he’s doing constant blood tests (I do him in the middle of the night every night)… so you have to both be doing regular tests AND then not acting properly on them. Odd. Feels like rules designed to rule most people out (cynical of me, I know).

    Premier Icon superdan
    Subscriber

    It varies by area, down to the local Clinical Commissioning Guidelines, worth digging them out. I hit a couple of them just about for our local one, but had been self funding for a year, so could show evidence of the benefit too.

    poly
    Member

    Harry – glad to hear things have got off to a good start.

    Stoddy- the rules seem to be applied differently in different areas. Some have prioritised those who they think will be most compliant, some those who currently present the biggest burden on the system and others where the long term benefit is potentially greatest.

    Mrs P initially self funded and didn’t use it all the time, she would put it in for events or trips coming up and then not use it for a couple of months. This showed the consultants that she could get useful information, understood how to benefit from it and that it encouraged her to be more active (so long term upside) and got her on the list fairly early on after they started providing for adults in this area.

    However, if the funding was cut for either her pump or sensors I would find the money somewhere. I know £100 (ish) a month is not just growing on trees but it really is that much better – it might mean we don’t go on holiday, or buy a new bike, or eat out, or take pack lunches, or get the bus instead of the train but any of those would be sacrifices I would make and I’m not even the direct beneficiary!

    fossy
    Member

    Superdan, we’ve used the Ambrosia Blucon on top of the Libre, same as the Miao Miao in principal. And used the tape as well, as the blucon makes it stick out a bit more. Only issed was my son ‘drowned one’ jumping in the hot tub. Blucon’s are also now available in waterproof versions.

    He was being a typical teen and relying too hard on the tech, and ignoring it, so we stopped the libre for a bit (self funded) and but haven’t re-introduced the blucon and x-drip – just letting him scan on the libre reader for now.

    The pump he wants comes as a system – it has a CGM and is ‘funded’ so keeping fingers crossed.

    Premier Icon Harry_the_Spider
    Subscriber

    Wow. I’m glad we live in Bury. We didn’t even ask for it!

    fossy
    Member

    Stockport, and they won’t give a libre out, despite us showing the Trust how good they were 12 months ago for us, and the ‘blucon’. The trusts are well behind knowing what’s available.

    The thing is, a libre saves them a fortune. NHS price is about £35, or £70 a month. 50 test stips might last a week, and they cost at least £20 at NHS prices (I think more) – and add in lancets etc etc.. and add in the better control with the predictive alarms….

    Post code lottery again.

    Premier Icon superdan
    Subscriber

    Fossy I had a bluecon first, also killed it, it was a lot less reliable, used a battery that didn’t last all that long. I didn’t rate it. The miao miao is a night and day improvement.

    Premier Icon svensvenson
    Subscriber

    been looking at the miao miao on line. what’s the big advantage? is that you can set alarms? I have to say it looked kind of big stuck on there… I don’t really have any problem scanning multiple times a day (16 – 20+) as and when I feel like it.

    Also, just out of curiousity, has it always been the law to do a finger prick before driving? No-one ever said anything about that for the 9 years I lived in the UK as a diabetic. I think I’d be willing to argue the toss with a scanner/reader now. (it that French militancy rubbing off on me…)

    fossy
    Member

    That’s it @svensvenson. The are a little like a CGM – sends readings to your phone, so it will alert you if you are going too low, or high. It’s just that little more practical than scanning. E.g. you are out on your bike and the software detects you are going low, so can alarm before that happens. Also handy for night time hypo’s. Wakes you up if low.

    Premier Icon tomhoward
    Subscriber

    Also, just out of curiousity, has it always been the law to do a finger prick before driving? No-one ever said anything about that for the 9 years I lived in the UK as a diabetic. I think I’d be willing to argue the toss with a scanner/reader now. (it that French militancy rubbing off on me…)

    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.

    Premier Icon svensvenson
    Subscriber

    thanks for the clarification fossy, that’s pretty much what I thought. I’ll think about it, budget being a factor here. I’ll ask what’s available here to for “free”. (we all pay really).

    night time alarms would be useful.

    whytetrash
    Member

    Had mine since Monday…it’s amazing, just run 10miles in the snow, checked bloods as I ran so much easier than stopping and faffing about!…changed my long acting insulin,control is better already …love it😁

    Premier Icon eddiebaby
    Subscriber

    A mate of mine as a production engineer in Witney for Abbott the company who make the Freestyle and a lot of other stuff. They simply cant meet demand as diabetes is going through the roof around the world (well ‘first world’ anyway).
    Scary times.

    Premier Icon Harry_the_Spider
    Subscriber

    We’re still on pens and have noticed a lag on the insulin kicking in, especially at breakfast, that results in a high blood glucose spike.

    Overall averages are still good, but we could do with knocking this bump down.

    Premier Icon tomhoward
    Subscriber

    Are type 2 diabetics (which is going through the roof) using libre’s? I thought it was just type 1 (not so much)? Anyway, mine arrived yesterday. 3weeks after ordering. Was still showing as 5-7 working days delivery times.

    Aren’t they made in Ireland?

    Despatch note says they were sent from France (as they all have, from memory).

    Premier Icon eddiebaby
    Subscriber

    Are type 2 diabetics (which is going through the roof) using libre’s?

    I have to admit I’m not sure. Abbott cover the whole diabetes spectrum from what I understand.

    LD
    Member

    Echo all comments on how awesome these are, real game changers!
    Anyone flown with them as I’m guessing scanners will pick up metal in the sensor? Any issues at security?

    Premier Icon Harry_the_Spider
    Subscriber

    The handbook says that you should tell them at airport security.

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