FreeStyle Libre

[Cassie]

apologies if this is in the wrong post but I’m on my iPhone and this
Forum is hard to negotiate. Can anyone who has the freestyle Libre let me know how they are getting on with it. I’ve had mine for 2 months and thoroughly sick of it. Would like to discuss with other users as to how they are getting on with it both positives and negatives.
Or please direct me to the correct place to post this. Thanks

 

[SB2015]

Hi Cassie

I am an addict. I started thinking that I would just use it when I was away on holiday and when I needed to check something on my pump. Once I had started to use it I found I wanted to carry on. It has enabled me to reduce my HbA1c by 10.

For me the main benefits are:

- heading off highs and lows using the direction of travel of my glucose.
Because it is so easy to check, I check more often, especially during exercise. With the arrows showing me which direction my levels are going I have reduced the number of hypos. A 4.5 with a downward trend prompts a jelly baby, a 4.5 with level or a rise is ignored. It is brilliant when swimming as I no longer need to stop, dry my hands, find my glasses in order to check levels

- deciding how far ahead of a meal to pre-bolus
I know my insulin takes a bit of time to get active, and carbs eaten at a meal will be active more quickly. To match the peaks for these I usually give my bolus before my meal. However the timing of this will depend on my BG and the trend arrow.

- more knowledge about which specific foods cause different size spikes
I had happily eaten my carbs and matched with insulin. My levels were fine by the next meal in general.
However I was amazed at the size of the spikes I was getting, especially at breakfast. My spikes are now blips as I have adjusted the foods I eat and the timing of my bolus

- safer when driving
When I am about to drive a 5.2 fine. However a 5.2 with downward arrow, I know I need a snack.

- reviewing my pump settings
I download my data from the Libre and use this at the end of a month to see if there are any areas that are looking a bit wobbly. This might prompt a change in the settings I have on my pump, or require a fasting test to check background (basal) insulin.

The ‘problem’
- Some differences between the Libre and BG,
These are measuring different things and there is a bit of a time lag between interstitial fluid glucose and BG, so that does no bother me. I notice that this is more evident if I am dehydrated so I use it as a prompt to drink more water.

I hope that helps. Perhaps think about what you want to use it for, and see if that it can help.

 

[Ljc]

Hi @Cassie. Welcome to the forum. If you wish you might want to introduce yourself on the newbies say Hi here forum. But your in the right place for general discussions re diabetes.

We have quite a few members who use the Libre, me included. What problems are you having with yours.

 

[bamba]

Does the libre sample at fixed intervals the report when scanned, or can scanning initiate a new reading.

I understand that it keesp readings for 8 hours, with quarter hour sample points which implies some sort of fixed size ring buffer.

Does this mean that the latest reading may not only be the 5 minutes insterstial fluid is behind blood glucuse - but now up to 19 minutes behind as that reading was up to14 minutes ago ?

 

[mikeyB]

The scanner just samples all the time. The reading you take is the current interstitial fluid level, which is approximately 10-15 minutes behind blood levels. The only time that this is any problem is recovering from a hypo, when you should revert to test strips to avoid overshooting.

 

[Cassie]

Hi Cassie

I am an addict. I started thinking that I would just use it when I was away on holiday and when I needed to check something on my pump. Once I had started to use it I found I wanted to carry on. It has enabled me to reduce my HbA1c by 10.

For me the main benefits are:

- heading off highs and lows using the direction of travel of my glucose.
Because it is so easy to check, I check more often, especially during exercise. With the arrows showing me which direction my levels are going I have reduced the number of hypos. A 4.5 with a downward trend prompts a jelly baby, a 4.5 with level or a rise is ignored. It is brilliant when swimming as I no longer need to stop, dry my hands, find my glasses in order to check levels

- deciding how far ahead of a meal to pre-bolus
I know my insulin takes a bit of time to get active, and carbs eaten at a meal will be active more quickly. To match the peaks for these I usually give my bolus before my meal. However the timing of this will depend on my BG and the trend arrow.

- more knowledge about which specific foods cause different size spikes
I had happily eaten my carbs and matched with insulin. My levels were fine by the next meal in general.
However I was amazed at the size of the spikes I was getting, especially at breakfast. My spikes are now blips as I have adjusted the foods I eat and the timing of my bolus

- safer when driving
When I am about to drive a 5.2 fine. However a 5.2 with downward arrow, I know I need a snack.

- reviewing my pump settings
I download my data from the Libre and use this at the end of a month to see if there are any areas that are looking a bit wobbly. This might prompt a change in the settings I have on my pump, or require a fasting test to check background (basal) insulin.

The ‘problem’
- Some differences between the Libre and BG,
These are measuring different things and there is a bit of a time lag between interstitial fluid glucose and BG, so that does no bother me. I notice that this is more evident if I am dehydrated so I use it as a prompt to drink more water.

I hope that helps. Perhaps think about what you want to use it for, and see if that it can help.

Hi Mike, and thank you very much for your detailed reply. I will try and reply succinctly as possible as to what I'm experiencing.
My freestyle libre is part of a NHS Scotland trial, I live in the Central Region and my health authority - Forth Valley Health Board, is the only health authority allowing a free trial of the Libre. To qualify for it I had to have attended a carb counting course (did this 2013) and to be willing to give the Libre a go. Also attend an introductory course with other like minded diabetics.

I found the course extremely helpful and for the first 6 weeks afterwards I really enjoyed the freedom of the Libre. And the freedom from incessant finger pricking! On the course we were advised where to place the sensor. And the DSN did advise us not to place it on the outer arm (where Theresa May was shown wearing one recently) but to use the upper, inner arm. This is where I've had some issues. The instruction leaflet which accompanies the sensor pack shows a diagram placing it on the outer upper arm. But I persevered, and did it how my DSN told me to. The first time it was fine, but the second time it didn't work properly and I had to send it back for investigation. The third time, after three days, it half came away from my arm and obviously stopped working. The fourth one which replaced it was ok. The fifth and current one, is OK, but I find it a wee bit uncomfortable and am "aware" of it. Where do you apply your's?

I used to use an Insulinx freestyle meter, which I was very fond of, as it calculated my correction doses and carb to insulin ratio, which the Freestyle Libre does if you use the BT strips but not if you swipe the sensor, so it's been a guessing game recently. In the two months I've been using it I have put on 5 pounds in weight. Which indicates to me, over use of insulin. Having lost near a stone last year and getting back to my correct weight, this has been disheartening.

I also find, despite being very computer literate, sometimes there is just too much information available! My last HbA1c 5 months ago was 53 (8.6) which my consultant was more than pleased with, although of course I would like it to be a bit lower obviously. I got stressed the other day as for no reason I could fathom my blood tests had been higher than normal and my average on the meter had risen to 9.8.

That's just a few of my issues. I'm sorry this is a bit lengthy but I hope everyone else who has applied can take something from this and maybe give me some input and help/advice. Thanks in advance.
I've been type 1 diabetic for 46 years, and well controlled and no issues or side effects. I've 3 grown up children and three grandchildren under 4.

 

[Cassie]

Hi @Cassie. Welcome to the forum. If you wish you might want to introduce yourself on the newbies say Hi here forum. But your in the right place for general discussions re diabetes.

We have quite a few members who use the Libre, me included. What problems are you having with yours.

Lin, so I don't take up too much space on here would you mind reading my reply to Mike above, which outlines my issues? I don't use a pump, although I'm on a waiting list for a trial. Still not sure if I want to have something attached to me all the time. I'm on Levermir twice daily, 10 units am, 5 units pm. And Novorapid for food, which I carb count. My usual total insulin dose including the long acting Levemir is around 33 units per day. Although since using the Libre this seems to have increased, hence my concern about slight weight gain. I'm active. Thanks for any help or advice

 

[Ljc]

I’ve used the Libre full time for around 14 months now. In that time I’ve had two sensors that were a bit uncomfortable for the two weeks, not actually painful though.
I wouldn’t like to have the sensor on the inside of my arm, I wear mine more round the back but I’ve found I get more accurate results when compared to my meter plus it’s more comfy about halfway down my upper arm and doesn’t catch on my clothes so much when getting dressed/undressed.

I’m guessing that as you’re ona trial , you don’t have much if any choice of where to place the sensor.

If they allow you the Freestyle Optium Test strips, that the Freestyle Libre uses then you could use these to calculate your bolus.

Till I’m happy with a new sensors readings I’ve got into the habit of doing a finger prick at least once a day then 10 mins later swiping the sensor. To compare results . I’m wondering if your sensors readings are too far out from a finger prick and that’s why your Hb1ac has increased, the reason I’m saying this, some people on here have found that this system doesn’t work well for them ie their levels are way out compared to a BG meter and they eventually gave up using the Libre .

I too wish I could use the insulin calculator when swiping

 

[SB2015]

Hi Mike, and thank you very much for your detailed reply. I will try and reply succinctly as possible as to what I'm experiencing.
My freestyle libre is part of a NHS Scotland trial, I live in the Central Region and my health authority - Forth Valley Health Board, is the only health authority allowing a free trial of the Libre. To qualify for it I had to have attended a carb counting course (did this 2013) and to be willing to give the Libre a go. Also attend an introductory course with other like minded diabetics.

I found the course extremely helpful and for the first 6 weeks afterwards I really enjoyed the freedom of the Libre. And the freedom from incessant finger pricking! On the course we were advised where to place the sensor. And the DSN did advise us not to place it on the outer arm (where Theresa May was shown wearing one recently) but to use the upper, inner arm. This is where I've had some issues. The instruction leaflet which accompanies the sensor pack shows a diagram placing it on the outer upper arm. But I persevered, and did it how my DSN told me to. The first time it was fine, but the second time it didn't work properly and I had to send it back for investigation. The third time, after three days, it half came away from my arm and obviously stopped working. The fourth one which replaced it was ok. The fifth and current one, is OK, but I find it a wee bit uncomfortable and am "aware" of it. Where do you apply your's?

I used to use an Insulinx freestyle meter, which I was very fond of, as it calculated my correction doses and carb to insulin ratio, which the Freestyle Libre does if you use the BT strips but not if you swipe the sensor, so it's been a guessing game recently. In the two months I've been using it I have put on 5 pounds in weight. Which indicates to me, over use of insulin. Having lost near a stone last year and getting back to my correct weight, this has been disheartening.

I also find, despite being very computer literate, sometimes there is just too much information available! My last HbA1c 5 months ago was 53 (8.6) which my consultant was more than pleased with, although of course I would like it to be a bit lower obviously. I got stressed the other day as for no reason I could fathom my blood tests had been higher than normal and my average on the meter had risen to 9.8.

That's just a few of my issues. I'm sorry this is a bit lengthy but I hope everyone else who has applied can take something from this and maybe give me some input and help/advice. Thanks in advance.
I've been type 1 diabetic for 46 years, and well controlled and no issues or side effects. I've 3 grown up children and three grandchildren under 4.

Hi Cassie

Positioning sensor
I am not sure why your DSN recommended it goes on the inside of your arm. I wear mine on the outer (flabby) bit of my upper arm. I choose to cover it with a see through patch (tegaderm) as I had one fall out when it met a door jam!! I wonder if that is why they have advised you to use the inter arm. I think that would really irritate me being aware of it all the time.

Finger pricks as well
I still do my fingerpricks for meals, driving and bedtime, because like you I want the bolus calculator, and my handset talks to my pump. However I find the advantages I listed previously make it well worthwhile me using the Libre as well. I self funded for two years, and there were a lot of other things I would have given up rather than have done without my Libre.

 

[Cassie]

I’ve used the Libre full time for around 14 months now. In that time I’ve had two sensors that were a bit uncomfortable for the two weeks, not actually painful though.
I wouldn’t like to have the sensor on the inside of my arm, I wear mine more round the back but I’ve found I get more accurate results when compared to my meter plus it’s more comfy about halfway down my upper arm and doesn’t catch on my clothes so much when getting dressed/undressed.

I’m guessing that as you’re ona trial , you don’t have much if any choice of where to place the sensor.

If they allow you the Freestyle
Back in a mo

Thanks! Well actually I can place it where I want (in the privacy of my own home ha ha!) but I'm such a "teacher's pet" I decided to do what I was told. I wondered if they had found the results were may be not so good or something from past experience. It seems strange the leaflet has a different instruction! seriously thinking of the next time placing the sensor where you suggest.

 

[Cassie]

Hi Cassie

Positioning sensor
I am not sure why your DSN recommended it goes on the inside of your arm. I wear mine on the outer (flabby) bit of my upper arm. I choose to cover it with a see through patch (tegaderm) as I had one fall out when it met a door jam!! I wonder if that is why they have advised you to use the inter arm. I think that would really irritate me being aware of it all the time.

Finger pricks as well
I still do my fingerpricks for meals, driving and bedtime, because like you I want the bolus calculator, and my handset talks to my pump. However I find the advantages I listed previously make it well worthwhile me using the Libre as well. I self funded for two years, and there were a lot of other things I would have given up rather than have done without my Libre.

I'm seriously thinking of the next time I replace the sensor of trying the outer arm! It's quite hard placing it on the inner arm, we were shown by the DSN to hold our arm up straight, and then place it in the middle area. This has never seemed quite right to me,many like I said this time I'm aware of it being "there".

 

[Cassie]

I'm seriously thinking of the next time I replace the sensor of trying the outer arm! It's quite hard placing it on the inner arm, we were shown by the DSN to hold our arm up straight, and then place it in the middle area. This has never seemed quite right to me,many like I said this time I'm aware of it being "there".

Also it would be more discreet in a way to scan my upper arm rather than the inner arm. After these replies, it has spurred me on to keep on with it. I felt a bit low this morning when I posted my question, as although I rarely let diabetes get me down, the sensor and Libre seem to have made me more aware of being diabetic than I have before in all my 46 years of diabetes type 1

 

[bamba]

There are reports of sensors 'flatlining' at night when people lie on them perhaps they thought this less likely on the inner arm.

 

[Robin]

I'm seriously thinking of the next time I replace the sensor of trying the outer arm! It's quite hard placing it on the inner arm, we were shown by the DSN to hold our arm up straight, and then place it in the middle area. This has never seemed quite right to me,many like I said this time I'm aware of it being "there".

I've found that I get the most comfortable result when I hold my arm like it would hang normally while I apply the sensor if you see what I mean. Holding it up straight, (or in any other direction) stretches the skin a different way, so it feels odd when you then relax the arm. I usually put mine round the back of my arm because I tend to sleep on my side, and if I've been lying on the sensor, I sometimes get a sudden low reading, which then bounces back up when I've turned over!

 

[mikeyB]

Like an insulin injection, I move the positioning of the sensor around in a sort of rota - more to the inside, round the back or more to the outside. I don’t notice any significant variation other then the intrinsic delay. The problem with inserting on the inner part of the arm are some fairly superficial veins in that area.

I’m not that fussed to be honest. Even with wobbly legs and a support stick, I can manage to get through doors unscathed. (For sure, since I gave up alcohol🙂)

I should add, I never feel it when it’s on, any more than I feel my bum when I sit down. That’s the brain switching out unnecessary input. Don’t ladies have that? It’s not something I’ve ever thought to ask.🙄

 

[SB2015]

Like an insulin injection, I move the positioning of the sensor around in a sort of rota - more to the inside, round the back or more to the outside. I don’t notice any significant variation other then the intrinsic delay. The problem with inserting on the inner part of the arm are some fairly superficial veins in that area.

I’m not that fussed to be honest. Even with wobbly legs and a support stick, I can manage to get through doors unscathed. (For sure, since I gave up alcohol🙂)

I should add, I never feel it when it’s on, any more than I feel my bum when I sit down. That’s the brain switching out unnecessary input. Don’t ladies have that? It’s not something I’ve ever thought to ask.🙄

I also don’t notice it once it is in/on. It does sometimes get a bit itchy towards the end of two weeks. However it is still worth it for the info I get from it.

 

[trophywench]

I got no consistent results from mine over the 5 weeks I tried it (again free trial for the reader and one sensor and then two a very kind person passed on to me as they'd ordered more than they could use themselves before the expiry date on them) but the middle one I ripped off on the edge of a door the day after I glued it on - only been activated that morning and by teatime it was in the bin.

I did more testing with my meter to check (it's my pump meter I use, which has the bolus wizard for dose calculations within it, and algorithm for IOB etc - not on the pump so can't avoid using it unless I revert to 'manual' mental arithmetic calculations) but it was never consistently 'out' by any percentage and swore I was hypo for various times up to 48 hours once when my body and meter said I wasn't. Completely useless! - and a waste of NHS money on extra strips, plus my own time frustration etc.

Have to say - I am still the only person I've ever seen so far on the world wide web that this has happened to - BUT the thing is, it just goes to show that it is not 100% brilliant AND that we really are all different! LOL

 

[HOBIE]

Love mine. Great results, graphs 😉 Good luck with the info from yours

 

[mikeyB]

The thing I really love about the Libre is that you can do it in the dark. I’ve taken to popping the reader in the top pocket of my PJs. Could never do that with test strips. I like it there because I’ve completely lost my ability to wake up when hypo, so if I do wake for any reason eg bladder, I can always easily check and look out for the directional arrow. (That’s on the reader, not on the wall pointing to the loo)

 

[Cassie]

That made me laugh Mike!! Well, have to admit today, I've been feeling much more optimistic about the Libre, esp after reading all the replies. We went out for the day today (yesterday we were snow bound) today we have blue skies and sunshine - typical Scotland 4 seasons in a day. We went for coffees on the way, plus lunch out, and I started to realise just how much easier the Libre can make my life. I think maybe it does take a while to get used to "all the information", and it's easy to get overwhelmed by it all. But I can see how helpful the information can be pointing me in the right way. My six month review is at the end of April, and if I can show the diabetic team I've made good use of the Libre I will be able to keep it. Suddenly the thought of having to give it back if I stop using it now, has spurred me on to stick with it, and keep going. I see from my sensor usage data I average 15 scans per day and 99% of data has been captured. So I'm going to stick with it! Thanks to you and everyone else who has commented, think I needed a bit of encouragement plus like we all do sometimes, I was feeling a bit fed up with the daily grind of type 1.