Re FreeStyle LibreLink . What is a realistic target for maintaining results in target range

Nick25

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Type 1 for 50 years but control had been deteriorating recently. Only recently given opportunity to use FreeStyle LibreLink by consultant (after previous decline by GP).
Initial introduction was viral and after 10 days use I already have questions but my next appointment is not until March. Using the sensor is confirming what I have known , that although my Hba1 is quite good it is actually an average of a significantly varying blood glucose levels
So a couple of questions.
Q1 Sensor Usage - does % of data captured refer to amount of tests used up ( is there a limit) or % of time the Ap is picking up data?
Q2 What is a realistic target for keeping in target range. I realise everyone is different but what percentage in range are people achieving? What percentage are medical advisors pushing for?
Thanks
 

barrym

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A1. The sensor stores a reading every 15 mins. This is what the TIR is calculated from. It is a fixed number of readings (assuming no missed scans etc) ie 7 days x 24 hours x 4 readings per hour.

A2. You will get a lot of personal stories here I'm sure. I aim to keep my TIR above 90%, and do generally. A the moment I'm showing 97% for 7 days, 94% for 13, 90% for 30, 90% for 90.

You will discover what affects your bloods causing spikes & drops, the food, the insulin etc and begin to manage it. I won't pretend it's easy.

It is a 24 x 7 obsession.

HTH
 

In Response

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The realistic TIR depends entirely on what your range is. I use a range of 4 to 9.5. The logic for this is that anything under 4 is a hypo and I have seen Libre graphs of people without diabetes who spike to 9 so I have given myself a little leeway on that.
I read somewhere that you should be aiming for around 85% in range with no more than 5% below 4.
However, this all depends on things like
- personality. Are you likely to get anxious!
- Libre accuracy. Please do not rely 200% on Libre. The recommendation is to always check highs and lows before treating (unless it is an obvious hypo)
- lifestyle. For example, if you are driving a lot, you may want to aim slightly higher for your lower range
- age. I believe the target is relaxed as we get older
- what other health conditions you have. Remember to treat all your body not just your diabetes

As you are new to Libre, please read around the forum, especially regarding the limitations. Many people initially get very frustrated with it because they expect it to be accurate all the time or don't scan often enough (the sensor only stores 8 hours of data so you must scan at least once every 8 hours if you don't want to lose data).
 
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becca59

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I believe the setting for standard that medical professionals look at is 3.9-10 they are looking for 70% in range. I set mine 4.2-8.5 which is tight but makes me work harder. I aim for 80% in this and regularly hit 90%+
I just feel that by having it set up to 10 I would slacken off and end up with even higher numbers. I rarely go below 4 these days as I always down a jelly baby if the alarm goes off.
 

EllieM

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I believe the setting for standard that medical professionals look at is 3.9-10 they are looking for 70% in range.
Backed up here
 

Nick25

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Thank you everybody that is all very helpful.
My Ap began with a range 4.3 which I have adjusted up , because 4.3 is way too low for me. I would be beginning to suffer hypo symptoms that low.
I think the law stipulates you have to be able to show a test result of 5 or over within 2 hours of beginning to drive a car , so that seems a good lower limit to me.
 

Nick25

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Backed up here
Thank you - very useful and particularly interesting to read actual figures attributed to the potential advantages of staying in range, rather than just the rather vague “ it’s helps prevent complications” that I have been told for last 50 years!
 
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Nick25

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A1. The sensor stores a reading every 15 mins. This is what the TIR is calculated from. It is a fixed number of readings (assuming no missed scans etc) ie 7 days x 24 hours x 4 readings per hour.

A2. You will get a lot of personal stories here I'm sure. I aim to keep my TIR above 90%, and do generally. A the moment I'm showing 97% for 7 days, 94% for 13, 90% for 30, 90% for 90.

You will discover what affects your bloods causing spikes & drops, the food, the insulin etc and begin to manage it. I won't pretend it's easy.

It is a 24 x 7 obsession.

HTH
Wow that sounds impressive but a bit too onerous for me.
 

barrym

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Wow that sounds impressive but a bit too onerous for me.
Forgot to mention the range. I use 4.5 to 10 on the advice from my Endo. I used to try 4 - 7 which was impossible, but being a bit OCD'ish she said 'a normal person is 4 - 7' I took her literally. I was always beating my self up and making my wife's life a misery too, so I eventually relaxed it.

I've improved a lot since using Juggluco (a CGM app for Libre) which enables me to just glance at my phone (no unlock or scan required) and react more promptly if required. That's not to say I don't stray. Most days I'll spike after breakfast, and plummet after tea.

I must check dozens of times a day, which I certainly wouldn't do with a scan. It's a game changer.
 

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Thank you everybody that is all very helpful.
My Ap began with a range 4.3 which I have adjusted up , because 4.3 is way too low for me. I would be beginning to suffer hypo symptoms that low.
I think the law stipulates you have to be able to show a test result of 5 or over within 2 hours of beginning to drive a car , so that seems a good lower limit to me.
My understanding of the law is that you are recommended to eat carbs if you are above 4 but under 5. You can still legally drive knowing your level is 4.1.
 
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oldgreymare

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Thank you - very useful and particularly interesting to read actual figures attributed to the potential advantages of staying in range, rather than just the rather vague “ it’s helps prevent complications” that I have been told for last 50 years!
Thank you - very useful and particularly interesting to read actual figures attributed to the potential advantages of staying in range, rather than just the rather vague “ it’s helps prevent complications” that I have been told for last 50 years!
@Nick25,

I've been using a Dexcom CGM for 3 1/2 years and found it life changing. I'm familiar with TIR monitoring but this latest guide is definitely very informative.

Perhaps if I share a few insights from my last endo consultation it may have relevance for you. I've had some patterns of recurring nighttime lows over the past few months. So my endo explained his way of interpreting CGM BG patterns - first he checks Sensor usage as this will influence the accuracy of the CGM trend readings (i'm usually using my sensors 85-95% of the time), then for LONG TERM diabetics he focuses on hypo levels ("time below range - TBR") as the biggest priority - he explained his rationale is that for long term diabetics that have survived without developing severe complications, their biggest risk in his opinion is now from hypoglycaemic events (i.e, below 3.9), especially in the elderly. So he has asked me to focus on reducing my likelihood of hypos.

Only next does he review TIR and "time above range - TAR" patterns. But my endo still prioritises zero TBRs as the first target for me (15 years a Type 1) only then TIR as the next target.

Of course this advice is my personal experience but hopefully may give you some ideas to discuss with your health care team. BTW I've shared the Time in Range paper with GP friends who hadn't seen it yet, but thought it very helpful as the number of Libre users are growing in their practices.

Edited for grammer.
 
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ATLOVART

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The realistic TIR depends entirely on what your range is. I use a range of 4 to 9.5. The logic for this is that anything under 4 is a hypo and I have seen Libre graphs of people without diabetes who spike to 9 so I have given myself a little leeway on that.
I read somewhere that you should be aiming for around 85% in range with no more than 5% below 4.
However, this all depends on things like
- personality. Are you likely to get anxious!
- Libre accuracy. Please do not rely 200% on Libre. The recommendation is to always check highs and lows before treating (unless it is an obvious hypo)
- lifestyle. For example, if you are driving a lot, you may want to aim slightly higher for your lower range
- age. I believe the target is relaxed as we get older
- what other health conditions you have. Remember to treat all your body not just your diabetes

As you are new to Libre, please read around the forum, especially regarding the limitations. Many people initially get very frustrated with it because they expect it to be accurate all the time or don't scan often enough (the sensor only stores 8 hours of data so you must scan at least once every 8 hours if you don't want to lose data).
Helo,
I'm using libre 2 with XDRIP, unfortunately in order to obtain the freestyle libre from state I'm forced to use the libre link app with it connected to the Endo consultation.
I completely agree with the above, the endo consultation depends 200% on the records of librelink and instead of take in consideration the other symptoms, such us the anxiety and stress of the work professional, working lifestyle, working travel, etc I personally when I'm stress out and with anxiety as I'm a quality inspector, the insulin does little effect, but then when relax the glucose level fall's like free fall.

By othe hand I can say that libre 2 lies!

A1. The sensor stores a reading every 15 mins. This is what the TIR is calculated from. It is a fixed number of readings (assuming no missed scans etc) ie 7 days x 24 hours x 4 readings per hour.

A2. You will get a lot of personal stories here I'm sure. I aim to keep my TIR above 90%, and do generally. A the moment I'm showing 97% for 7 days, 94% for 13, 90% for 30, 90% for 90.

You will discover what affects your bloods causing spikes & drops, the food, the insulin etc and begin to manage it. I won't pretend it's easy.

It is a 24 x 7 obsession.

HTH
The libre 2 do not makes readings at each 15 min, but does lots of measures and then performs a median value, that on this case is a taxation value on time, and this is very important to know as if the insulin is given in a zone where you pick blood, you can rapidly drop without notice it, as the last values do not take importance in relation to the rest of the values, as it a taxation in time and therefore it will only show a drop when the mean start to decrease.

This can also be easily verified between xDRIP and librelink, on xdrip you can see in advance the raising or the drop on glucose,.

On libre 1, the measures could be seen as raw data with the APP LIAP, it was a wonderful APP, but as libre link 2 started to communicate with the phone in an encripted channel, the app LIAP was unable to read it.

What I really do not understand is "It is a 24 x 7 obsession." this type of obsession is taken by the endo consultant and they can't see that this diseases is already a prison for the person and it seems that is better to push the persons to the cliff instead of explain all the type of insulin or equipment placed on the market in order to help the monitoring of the disease.

Another completely different thing is the analogy of the ketone bodies!

As I can observe no one controls the glucose by the ketone bodies! The ketone bodies appears when the glucose is higher or when the cell need insulin and do not have it, even if glucose is present. (Please correct me if I'm wrong) On this basis, I can give my personally experience, several times I'm at around 100mg/l and I'm feeling dizziness, I need to be in an higher value in order to feel well.

I would like to have the experience from others, as would like to know if this feeling is also replicate on others.

My best regards
 

EllieM

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Welcome to the forums @ATLOVART

On this basis, I can give my personally experience, several times I'm at around 100mg/l and I'm feeling dizziness, I need to be in an higher value in order to feel well.
Do you ever check your libre reading against a glucometer? Some people find that the libre reads low or high compared to a glucometer. I would expect feelings of dizziness to be associated with hypoglycemia, which is typically going to occur at around 70mg/dL .....
 

ATLOVART

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Welcome to the forums @ATLOVART


Do you ever check your libre reading against a glucometer? Some people find that the libre reads low or high compared to a glucometer. I would expect feelings of dizziness to be associated with hypoglycemia, which is typically going to occur at around 70mg/dL .....
Good morning,

To answer to your question, YES I check against blood test, I personaly hate the librelink I really use the Xdrip as it as calibration curve and the librelink only relies on the software logaritm and database defined by freestyle, On this cases the calibration can't be asigned to a normal distribuition and should be against a calibration value against time directely with the test blood of the patient.

"Some people find that the libre reads low or high compared to a glucometer." this I know very well but the medics do not know this and they thrust on the medical lobbys of abbot, roche, etc instead of ear the patients and the experience of someone that have prooves of the wrong doing of freestyle!

I'm a quality inspector, therefore I'm very familiarized with mistakes of the manufactures!

Also what **** me off, is that the endo consultant do not know what I suffer, for instance I have high glucose when I have a flight, my body no not like low pressure of the airplane and therefore I inmediately start to raise glucose as well as get asleep.

The endo consultant do not know this information.
 

Tony337

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Hi
Fascinating post this......
I,ve never checked my TIR until this post.....turns out im 90%.
Last hba1c was 42.
Range is 3.9 to 9.0

Obsession is used as a negative when you can be obsessed by something in a good way.
I wouldnt call diabetes and what we do as an obsession but ....a way of life...sounds much better.

I'm really lucky as i have good awareness and can function normally until it goes below 2.1 so if my alarm goes off i can eat in time to avoid hypos.

I've never been hospitalised in nearly 50 years which i put down to luck and good management.

Anything i've said is about me and my view and in no way an attempt to sound smug or annoy.

Good luck

Tony
 
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ATLOVART

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Hi
Fascinating post this......
I,ve never checked my TIR until this post.....turns out im 90%.
Last hba1c was 42.
Range is 3.9 to 9.0

Obsession is used as a negative when you can be obsessed by something in a good way.
I wouldnt call diabetes and what we do as an obsession but ....a way of life...sounds much better.

I'm really lucky as i have good awareness and can function normally until it goes below 2.1 so if my alarm goes off i can eat in time to avoid hypos.

I've never been hospitalised in nearly 50 years which i put down to luck and good management.

Anything i've said is about me and my view and in no way an attempt to sound smug or annoy.

Good luck

Tony

Please explain how can you have 4.2 being a diabetic!

1679670748335.png


Even, how it's possible to be ok until 2.1! where do you put the freestyle libre 2 sensor?
I really want to know the secret!

My best regards and thanks in advance for the revelations. :)
 

Antje77

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Please explain how can you have 4.2 being a diabetic!
Not 4.2% but 42mmol/mol.

Different countries use different units to measure blood glucose (mmol/l and mg/dl) and hba1c (mmol/mol and %)

Here's a different chart that shows them all in relation.
A hba1c of 42 means an average BG of around 6, right on the threshold between not diabetic at all and prediabetes.

1679673387311.png
 
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Tony337

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Please explain how can you have 4.2 being a diabetic!

View attachment 60000

Even, how it's possible to be ok until 2.1! where do you put the freestyle libre 2 sensor?
I really want to know the secret!

My best regards and thanks in advance for the revelations. :)
Erm 42 not 4.2 which equates to 6.0 in todays money.

If my alarm goes off at 3.9 i pop some jelly babies in and as we all know the libre takes its time to catch up so i can be reading in the twos but if i did a finger prick test i would be on the way up.

I can function ok in the twos though .....its just luck and or the way im built and i have such faith in jelly babies and studied their effect on my levels to the nth degree so once they are in my system i know i will be ok.


I had a bizarre and awful experience on an aeroplane only last year where i nearly passed out and the circumstances and explanation even more bizarre yet it happened.
Another story for another day....

I hope my ramblings make sense..

Good luck

Tony
 

ATLOVART

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I had a bizarre and awful experience on an aeroplane only last year where i nearly passed out and the circumstances and explanation even more bizarre yet it happened.
Another story for another day....

I have the same, but in the inverse situiation! when I take a flight my glicemia rises! And the insulin seems to not make effect, but when the pressure rises at the ground level the glicemia decreases a lot with a very deep slope!
 

Tony337

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Not being on holiday....
I have the same, but in the inverse situiation! when I take a flight my glicemia rises! And the insulin seems to not make effect, but when the pressure rises at the ground level the glicemia decreases a lot with a very deep slope!
My story is a bit different.........

I suffer with bile acid malabsorption and always take an immodium before i fly to avoid using the airplane toilet!
Always done it successfully.....

I'm sat in the plane 2 hours in and my sugar started dropping ....i wasn't phased and popped in a couple of jelly babies.....it kept going down and down and i had consumed a full pack of jelly babies......no effect ..... i dismissed the libre and used finger prick test 1.9....i'm beginning to flap...wife is flapping

i was so ill at ease i went to the toilet even though i didn't need to go.....i went......

next thing you know my levels begin to rise and jeepers i'm in the 17s which is where i would have expected to be after all those jellies...

The only explanation was the immodium somehow had suspended my digestive system and the jellies did not until i had been to the toilet and everything moved down so to speak.

Incredible story but true and i has a little fast acting insulin on board but not much and that feeling knowing the jelly babies should be working but arent was awful at the time but quite fascinating now!

Tony