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- Thread starter May
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Bruce Stephens
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Tdm
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Its not all or nothing though, is it? I love my libre, and the fact i can trust it to alert me if going low, i like the amount of data available. Its a nice design too (dexcom is coffin shaped). And it looks good with a nice bright sticker on.
BUT
I dislike it when it wakes me up in the middle of the night with a false low - or when i get one that hits a nerve or something if i move my arm in a particular way. Or one that just tells porkies. And it would be so nice to have a bath with nothing
BUT
I dislike it when it wakes me up in the middle of the night with a false low - or when i get one that hits a nerve or something if i move my arm in a particular way. Or one that just tells porkies. And it would be so nice to have a bath with nothing
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Welcome to the forum @May
Glad to have your experience on the boards!
Libre can be a great tool, but sensors don’t appeal to everyone, and can take some getting used to.
Can you identify anything about Libre that you find helpful? Or is it just the ‘big brother’ nature of being watched you don’t get on with.
If it’s something about the way the system works or perform for you there are other cost-equivalent options you can try on prescription such as the Dexcom One.
Glad to have your experience on the boards!
Libre can be a great tool, but sensors don’t appeal to everyone, and can take some getting used to.
Can you identify anything about Libre that you find helpful? Or is it just the ‘big brother’ nature of being watched you don’t get on with.
If it’s something about the way the system works or perform for you there are other cost-equivalent options you can try on prescription such as the Dexcom One.
I do like all the functions and the info it gives me, I’m just feeling anxious to which Reading is real or not. I am trying to keep my sugars at a good level and as my results go to the hospital it worries me what my ( scarey) diabetic doctor is thinking about my sugars.
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Both sensors and fingersticks have a margin of error. So the ’truth’ can be somewhere in between.
Sensors work best when you are well hydrated, and measure glucose in interstitial fluid which lags behind capillary glucose values by 5-10 minutes, which can make a difference if your BG is trending up or down. Libre also has a reputation for reading closer to fingersticks when in range.
If sensor values don’t match how you are feeling, it’s a good idea to check, but you have to bear in mind that fingersticks aren’t perfect either, and sometimes need double-checking too!
From the ‘Useful Links’ thread:
BG meter accuracy
It can be quite disconcerting for members new to self monitoring of blood glucose to get different results from BG readings taken close together, even when carefully following manufacturers guidance (washing hands etc). All meters for sale in the UK should comply with the following ISO standards 95% of the time, which allows a degree of variation (and 5% of results can read anything at all). If in any doubt, or if a reading doesn’t match how you are feeling, you should check again with a fresh strip.
Bruce Stephens
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I've found it helpful to interpret the "readings" more as predictions from their algorithm rather than actual readings from the sensor.
Generally for lows I'll treat them just to be safe (but not if I've just eaten), but for highs I don't take the number literally. I usually wait a bit and see what it says in 10-15 minutes, and quite often it's not quite as high as the first "reading". And to be honest there's not much difference between (say) 10.0 and 12.0 in terms of what it means to how I'll respond.
nonethewiser
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Bruce Stephens
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Yes, some people find Libre sensors don't work for them but one of the others do. (There are 3 others that should be just as easy for your GP to prescribe.)
Tdm
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If libre disagrees with bg strips, i use bg strips. If in doubt, use another strip. I have a second bg strip monitor just in case (breakages, losin git etc). It is disconcerting when things can't be pinned down. I don't like how carb counts vary either
Proud to be erratic
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Alas, those 3 other sensors can only be prescribed by your GP if he or she can find them in the "Formulary" (=list of approved medications) for your regional Integrated Care Board (ICB), that presumably guides the Integrated Care System (ICS). Huge ICSs have replaced lots of former CCGs.
Here in the "wild outback west" of Bucks, Oxford and Berkshire (W) (BOB) the BOB ICB have not even considered yet the recommendations from NICE Guidance NG17 as amended earlier this year, never mind noticing that NG17 is recommending cost neutral changes for the 3 extra options.
The BOB ICB and its ICS are to all intents and purposes both homeless and addressless, no-one knows where they live, they have no email or phone contact. Their chief Pharmacist, who presumably is a member of the Medical board that does such reviews, is also nameless. So it is challenging to an extreme to find someone who can say when the BOB ICB or ICS will use some common sense and adopt at least the 'no cost' recommendations of NG17.
Rant over. Bottom line: alternatives to Libre are only possible if they are in the local Formulary. Otherwise they can't yet be prescribed by GPs nor, presumably, Hospital Consultants.
Bruce Stephens
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True, though Partha Kar has suggested that GPs should get their paper prescription pad and write what they want to prescribe. However, it's certainly much easier to get Libre 2. I think there've been particular problems with Dexcom One because it also needs transmitters (and there needs to be some arrangement with pharmacies or something for those).
Proud to be erratic
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My GP has taken the trouble to formally write to me telling me she feels she simply can't write the prescription, because it is not on the Formulary. I appreciate her quandary
But it would have been more helpful and less time consuming for her if she'd sent a shorter letter back to my Consultant, copy to me, who'd asked her to prescribe Dexcom One and asked him to help - if he could. I can write such a letter and will; my instinct is to first get clear in my mind who, where and what is the BOB ICS and pin down who is responsible for what processes. So far I can find people who quote things from BOB ICS/ICB but none can show me a source document! It is intriguing as well as frustrating. I'm currently captive at home recovering from minor surgery, so I just need to use my time efficiently!
Bruce Stephens
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rebrascora
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Hi and welcome from me too.
Sorry to hear that you are struggling to have faith in the information your Libre gives you and that it may also be wobbling your faith in your BG meter too. I think it is really important to understand the limitations of Libre in order to cope with and interpret the information it gives you.
Have you had any education on the Libre system or was it just prescribed and you were left to your own devices? The manufacturer has an online Libre Academy that you can enroll in free of charge and takes you through learning modules and there are also some video presentations available on a different site which I know Mike (@everydayupsanddowns) will be able to direct you towards because he is one of the contributing presenters.
The key thing about Libre is that it measures interstitial fluid instead of blood and it takes interstitial fluid about 15 mins to respond to blood glucose changes, so it is always behind any changes in BG levels. The Libre tries to overcome this delay by using an algorithm which takes the previous sensor readings and extrapolates them, to predict where it will be in 15 mins in order to try to give you an indication of real time BG levels. The problem is that if your levels suddenly change direction, for instance if you have eaten a hypo treatment because your levels are dropping low, it isn't able to see that, so it will continue to predict your levels are dropping for a further 15 mins, whereas a finger prick test will probably show your levels are coming back up. If you didn't check 15 mins after treating a hypo with a finger prick you might look at the Libre and assume you needed a second hypo treatment because you ad dropped lower and therefore over treat a hypo and end up on the BG roller coaster. Also the Libre sensor is prone to what are called compression lows, so that if you lie on the arm with the sensor in your sleep, it can cause the system to say your levels have dropped and you are hypo when you are not, so it is important to double check any overnight low readings before taking a hypo treatment unless you feel obviously hypo. Once the pressure is released the sensor readings will gradually return to where they should be.. The sensor is also only likely to be fairly accurate within range. Once you get above or below range ie hypo or hyper, the readings become less accurate, so it is advised to double check high or low readings before taking action.
I use the Libre 1 but will soon be upgrading to the Libre 2 and it is likely I will be disabling the alarms most of the time because I value my sleep and my body is pretty good at waking me when I am hypo. I find my Libre 1 sensors are almost always about 1mmol lower than my BG when my levels are in range but can be a bit above BG if my levels go to mid teens and can be up to 1.5mmols below at low (hypo) levels, so it often exaggerates the number of times that I hypo and how low I go. Thankfully my consultant is also aware of the limitations of Libre so whilst he is not happy about the amount of time Libre shows I spend hypo, he accepts that they are not all actual hypos.
I test each sensor a few times in the first couple of days when my levels are nice and stable and in range (5s and 6s are ideal) to get an idea of how each new sensor is performing and I just make a mental note of that. Very occasionally I will find a sensor which is consistently 1.5-2mmols below BG when I am in range which is a pain but I can live with it. Consistently more than 2mmols out and I get in touch with Abbott and report it and they replace it. I am told the Libre 2 is slightly more accurate but I remain to be convinced. 🙄 That said, I absolutely love the Libre system and it has revolutionized how I manage my diabetes and I would not want to be without it for long, although I do take occasional breaks just to reset my appreciation of it over some of the frustrations.... No system is perfect!
Whilst BG meters also have an error margin, they are a more reliable indication of your BG levels, so if there is conflict between the two devices, trust your BG meter over the Libre and trust what your body is telling you over both. 😉
I really hope you can come to terms with the vagaries of the Libre system. There are some people who don't seem to be able to get along with it and it is persistently inaccurate but I think many problems are caused by people not understanding it's limitations and wanting to take the readings it gives at face value and you can't always do that.
PS. I should also have mentioned that many of us find applying a new Libre sensor a day before we actually need it, gives it some bedding in time before we come to activate it and that can mean that it provides more reliable results from the start. Even though the needle and filament are sterile, some people's bodies respond to a foreign body being fired into it and take a day or two for their body chemistry to settle down around the filament.
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