Freestyle libre reliability

Books1

Well-Known Member
Messages
153
Type of diabetes
LADA
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Insulin
The pro version is available in the US but not the personal version we have in Europe.
From what I can see they're hoping it will get approval in the US but not yet. If you have a UK address you could order the equipment here possibly.
 

RobertJ

Well-Known Member
Messages
217
Type of diabetes
Type 1
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Pump
I've been using these since May last year but at the moment mine's worrying me.

I have a One Touch Select Plus and that's said 11.7 then 11. The Libre says 6.2 and according to the graph I'm having the most perfect day ever.
 

Hector 2

Newbie
Messages
1
Type of diabetes
Type 2
Treatment type
Insulin
How much is the Libre and the sensors and whatever other stuff that goes with it? I kind of wonder why it's not available in the States. Can one purchase it online and just use it here?
How much is the Libre and the sensors and whatever other stuff that goes with it? I kind of wonder why it's not available in the States. Can one purchase it online and just use it here?
It is now available in the US in most major pharmacies...65-85 for reader, 36- 45 for sensor (only 10 days in US)
 

EllieM

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I'm not a typical user but...
I had 8 months of the most happy diabetic ever, I rarely used a blood testing meter and my HbA1C went down by 10%.

After that I developed an allergy to the sensor and the results became increasingly erratic. After multiple replacement sensors by Abbott and even a replacement reader I recognised that it was my body and autoimmune system - it read LO all night despite a blood sugar reading of 6....

For most people it's the best thing since sliced bread (it was for me for 8 months) but for some people it just doesn't work.
 

Dragonball

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
@EllieM same here - LO all night long even though I feel perfect in the morning and my glucose is around 100 mg/l (still LO /50ish on Libretto).

I don't know, it's helpful in one hand but on the other it's very confusing and can make more bad than good. What's the point if I have to fingerprick anyway (other than that I feel low/high sugar on my own).
 

Gork

Well-Known Member
Messages
71
Type of diabetes
Type 2
Treatment type
Insulin
New to this, first sensor was an out-of-box failure and FreeStyle replaced it. This second one tells me that I have a reading of 59 when a finger stick reading shows 105. This was not the only low-end-of-the-scale reading that I question.
 

Ellis 4F

Newbie
Messages
3
@EllieM @Dragonball am having the same reaction on my 3yo T1D son too...was very happy with libre for 8-9months, but now the canula just leaves a bump of hard scar tissue. No wonder the readings are out by outrageous margins, above 10mmol/L that it’s pointless to use. Am wondering is that the kind of allergy that you got?

He used to have rash on the outer skin only, solvable by using Cavilon, but now the adhesive seem easier to get loose, and once it does, seems like the water/soap/etc gets into the insertion part that it gets irritated so badly :’( tried a new sensor 3 days ago with different spot (higher up on the arm), really hoping that it might work as it used to. But now it starts to show the same outrageous error...getting desperate now, feeling out of options on FGM/CGM as I live in a country where neither Libre nor Dexcom has an official seller yet.
 

dmfinch

Member
Messages
5
I found sometimes the sensors are ok and sometimes not so good. I now sometimes use a dexcom which is very accurate. But unfortunately mine only seems to last 8 or 9 days. Yet I have read of others getting them to average much longer

Hello, I am 61 and was diagnosed Type 1 only about nine months ago--and started using Libre about six months ago. I find it to be highly inaccurate, and have had to request replacements often. I used one two weeks ago, however, which was very close to BG. The new one I'm wearing this week was off by 50 points (American) on the first test and 30 points on the second. I find that I almost always have a 20-30 point gap between BG and Libre. From now on I will wait 15 minutes before testing as someone in this forum suggested, but I am also going to find out if the ridiculous American "healthcare" system will allow me to switch to Dexcom. Thanks for all of the information. Very helpful. So difficult to learn of this disease at my age!
 

dmfinch

Member
Messages
5
New to this, first sensor was an out-of-box failure and FreeStyle replaced it. This second one tells me that I have a reading of 59 when a finger stick reading shows 105. This was not the only low-end-of-the-scale reading that I question.
This is very much like my experience with Libre. Wonder how the company can afford all the replacements. My pharmacist told me that they are constantly getting customers coming in for replacements.
 

EllieM

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@EllieM @Dragonball am having the same reaction on my 3yo T1D son too...was very happy with libre for 8-9months, but now the canula just leaves a bump of hard scar tissue. No wonder the readings are out by outrageous margins, above 10mmol/L that it’s pointless to use. Am wondering is that the kind of allergy that you got?

He used to have rash on the outer skin only, solvable by using Cavilon, but now the adhesive seem easier to get loose, and once it does, seems like the water/soap/etc gets into the insertion part that it gets irritated so badly :’( tried a new sensor 3 days ago with different spot (higher up on the arm), really hoping that it might work as it used to. But now it starts to show the same outrageous error...getting desperate now, feeling out of options on FGM/CGM as I live in a country where neither Libre nor Dexcom has an official seller yet.

I only got a rash on my skin under the sensor, though it was raw and inflamed. I suspect it might be possible to make it more accurate with a miaomiao transmitter and the xdrip+ accurate, which would allow you to calibrate the libre against blood glucose readings. But honestly once you're having a severe allergic reaction to something you've got to reckon it may not be safe to continue exposing yourself to that substance.

I don't know what to say to someone with a 3 year old though, that's such a hard age to cope with diabetes (I was diagnosed when I was 8 and I was fine, but I was old enough to do my own injections and detect hypos. And there was no blood testing at all in those days, so my blood sugar levels just ran higher than those of modern diabetic children ) . Some thoughts
1) go back to old fashioned finger pricking (sorry, I'm guessing that's really tough for a 3 year old)
2) use the libre less often (2 weeks on, 2 weeks off?) to see if that helps (bit of a long shot)
3) get the dexcom posted to you by a friend in another country

The libre is a pretty recent development, maybe if you post on the children and parents forum you can get advice from other parents of young T1s who managed the illness before cgms were available.....
Good luck and lots of virtual hugs, both for you and your little one.
 

becca59

Well-Known Member
Messages
2,856
Type of diabetes
Type 1
Treatment type
Insulin
I don’t think you are supposed to use the Libre on children under 4.
 

Copernicus

Well-Known Member
Messages
168
Type of diabetes
Type 1
Used it for 3 years (self funding) never had a false reading or any reaction to using it except once about 2 years ago when I had a small blister where the "wire" went into my skin. Perhaps I'm one of the lucky ones who's body just accepts the sensor. When I compare readings between the sensor and a finger prick there is hardly any difference. What a joy to no longer have to finger prick 8 - 10 times a day. Also an added advantage of the sensor is that you can see if your'e levels are stationary or rising or lowering, a finger prick test will not do that.
 
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EllieM

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Perhaps I'm one of the lucky ones who's body just accepts the sensor.

Look, I'm in total agreement. While it worked for me I was in seventh heaven. It clearly works well for many (most?) people. Unfortunately Abbott will never own up to the statistics. I just wish it still worked for me but I'm really happy for those for whom it does still works (hopefully the majority).

I just wonder about the statistics given that the UK seem to have decided that this is the cgm /flash reader of choice,,,, Will they fund a dexcom for those with loss of hypo awareness who can't use a libre?
 

MeiChanski

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2,992
Type of diabetes
Type 1
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Insulin
Look, I'm in total agreement. While it worked for me I was in seventh heaven. It clearly works well for many (most?) people. Unfortunately Abbott will never own up to the statistics. I just wish it still worked for me but I'm really happy for those for whom it does still works (hopefully the majority).

I just wonder about the statistics given that the UK seem to have decided that this is the cgm /flash reader of choice,,,, Will they fund a dexcom for those with loss of hypo awareness who can't use a libre?

I spoke to my dsn today and she said funding for a CGM like Dexcom is much more difficult, for adults some who drive will have to give up their driver’s license and declare they are hypo unaware. It’d be interesting to hear about consultants approving the libre 2 in future.
 

CearaRed1073

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Messages
24
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onions, cheeseburgers, diabetes, colors of red, yellow, and orange, houston (too big and WAY too much traffic, not nearly enough public transportation)
I've been using it for about 8 months. They can be quirky at times, some have been closer than others and it can sometimes take a day or two before I decide whether it's a "good" sensor or not. Despite the quirks, I think it's still well worth it once you learn how to adjust for differences.

Sometimes the differences are useful: for example, if it normally runs lower than blood, but I've taken a bolus and I'm wondering whether it's at work yet, if a blood test then shows lower than the libre, that's a clue that the insulin is now working - quite useful to avoid possible insulin stacking.

Inserting it causes a small amount of damage which can throw readings out so many insert about a day or so before activating to allow it to "settle".

Also, I try to activate a new one just before I get up in the morning on the basis that that's the time of day that blood glucose will probably be closest to interstitial fluid glucose. Don't know if there's any science to back that up but it seems to work for me: last few I've done this way have been closer than others.

Hasn't made diabetes "fun" but definitely easier and less guesswork!

LESS? really? if anything, i've had the opposite effect. still haven't been able to figure out the difference in the interstitial and glucose as sometimes it can be close (within 10 points), while others it can be vastly different (upwards of 50 points).

and wasting an entire day before activation also makes no sense to me as the thing is only good for 14 days, so wasting one of them? really? it already tells you you cannot use it for the first hour after insertion, seems like it would be adequate for any setting needing to be done. but what do i know, i'm still not happy with it. but i'm still testing it and uncertain about its future in my current existence.
 

kaylz91

Well-Known Member
Messages
1,090
Type of diabetes
Type 1
Treatment type
Insulin
and wasting an entire day before activation also makes no sense to me as the thing is only good for 14 days, so wasting one of them? really? it already tells you you cannot use it for the first hour after insertion, seems like it would be adequate for any setting needing to be done. but what do i know, i'm still not happy with it. but i'm still testing it and uncertain about its future in my current existence.
it only starts the 14 day countdown after activating it not when you apply it so you wouldn't be wasting a day at all
 

eventhorizon

Well-Known Member
Messages
456
Type of diabetes
Type 1
Treatment type
Insulin
it only starts the 14 day countdown after activating it not when you apply it so you wouldn't be wasting a day at all
I always start mine immediately after sticking the thing on. I used to wait 12 to 24 hours but didn't notice any improvement in accuracy.
 

kaylz91

Well-Known Member
Messages
1,090
Type of diabetes
Type 1
Treatment type
Insulin
I always start mine immediately after sticking the thing on. I used to wait 12 to 24 hours but didn't notice any improvement in accuracy.
I've never left it 24 hours to bed in before activating either its just apply and activate for me too but what I replied to was the person stating applying it a day early would give you a day less when it wouldn't
xx
 
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Sweetbinty

Active Member
Messages
41
Type of diabetes
Type 1
Treatment type
Insulin
The rep told us to apply replacement sensor 24 hours before the old one ran out.
This was so it got used to your bg.
It's a good bit of kit not 100% but saves finger pricks
 

Ellis 4F

Newbie
Messages
3
I only got a rash on my skin under the sensor, though it was raw and inflamed. I suspect it might be possible to make it more accurate with a miaomiao transmitter and the xdrip+ accurate, which would allow you to calibrate the libre against blood glucose readings. But honestly once you're having a severe allergic reaction to something you've got to reckon it may not be safe to continue exposing yourself to that substance.

I don't know what to say to someone with a 3 year old though, that's such a hard age to cope with diabetes (I was diagnosed when I was 8 and I was fine, but I was old enough to do my own injections and detect hypos. And there was no blood testing at all in those days, so my blood sugar levels just ran higher than those of modern diabetic children ) . Some thoughts
1) go back to old fashioned finger pricking (sorry, I'm guessing that's really tough for a 3 year old)
2) use the libre less often (2 weeks on, 2 weeks off?) to see if that helps (bit of a long shot)
3) get the dexcom posted to you by a friend in another country

The libre is a pretty recent development, maybe if you post on the children and parents forum you can get advice from other parents of young T1s who managed the illness before cgms were available.....
Good luck and lots of virtual hugs, both for you and your little one.

Hi again, sorry it took so long for me to write again. Thanks for your very considerate reply. Yes, getting my son diagnosed at 2.5 years old was tough, but we tried to see the silver lining and thought that having T1D at such a young age is advantageous in the sense that he wouldn’t remember what life was like without it and won’t miss the freedom he never had (I’m sure there’ll be future burnouts and anger nevertheless, but we’ll just take it one step at a time).

Back to the topic of the libre system, I found out what makes the reading so erratic on the last few sensors: he took longer time in the warm showers than before. AND with warmer water temperature. The humidity makes the adhesive loosen quicker, even though I have added 3M Nexcare micropore tape to secure the sensor. Once it loosen, I think what happens is that the cannula moves around too much, water & dirt gets in, and speeds up the formation of something called ‘foreign body granuloma’ (Tissue-encapsulation of an implant,splinter etc). When our body forms defensive tissue around the cannula, no wonder interstitial fluid can’t flow freely around it, and throws the glucose reading off. I guess this tissue buildup is also what makes many people experience that the readings on the last days of each sensor is off by larger margins.

After realizing it, I bathe him with cooler water in shorter period of time, and put on waterproof transparent film dressing to protect the sensor (the ones that are usually used post-surgery, such as Tegaderm or Leukomed T). Basically keeping the sensors tightly glued and dry as much as possible. These changes succeeded in making the sensors read fairly well again (by this, I mean the usual 1-2 mmol difference since libre always reads lower), and we’re now happily back on libre :)

I also found out that the reading is better using my phone’s LibreScan app that connects directly to Diabetes M app (best diabetes management app I’ve tried so far, and we’re sticking with it). The LibreScan app reads closer to blood glucose, with less delay time.

So that’s my update so far. Am now hoping that Libre 2 can spread quickly to other countries. Or even better, something non-invasive like the SugarBEAT from Nemaura. But I guess that’s something for another thread.

Thanks again @EllieM, virtual hugs & love to you too
 
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