FreeStyle Libre - My Life with the Machine

[Peter_Sylvester]

Tuesday, 31st October 2017
A few weeks ago, I saw on SKY television here in the UK, that the FreeStyle Libre was now going to be available on the NHS, subject to approval by the local Health Authority. (See announcement here)
As someone who is "on a mission" to reverse my Type 2 diabetes, and someone who has previously had several seriously painful fingers in an attempt to take regular blood tests to get more detail of my multiple Blood Glucose movements during the day, I decided to research this option.
On Wednesday 25th October 2017, I decided to take the plunge, to raid my Grandkids inheritance, and to stump up the £150 required for the Starter Pack of the FreeStyle Libre system.
On this continuing thread, I intend to share my experiences over the coming weeks, warts and all, in the hope that my experiences can help others.
Equally, you can help others (and me) too, by adding your own experiences about the FreeStyle Libre system on this thread.
Thank you in anticipation of your help and continued learning...
Peter Sylvester

 

[Squire Fulwood]

Well here is my tip which worked for me. I found the sensors a little inconsistent one with another and indeed I got one replaced due to it giving very odd readings. Abbott wouldn't discuss the broken one until I had worn it for at least 24 hours and after that they replaced it.
I read on this site of someone who attached the sensor and did not start it until 24 hours later so I tried it. I have had absolutely no trouble since and any readings I get compare well with my Freedom Lite which I always regarded as accurate.
If you wish you can take a reading using an appropriate strip plugged into your Libre scanner but I am not sure how I feel about comparing a machine with itself so that is not my first option.

 

[Peter_Sylvester]

What is in the Starter Pack...?
My Starter Pack arrived directly from Abbott the day after ordering.
It contained:
1 x Reader.
2 x Sensor Packs.

The Reader
The reader is a small black gizmo, which is about half the size of an i-phone 6.
It is re-chargeable with USB connected to a standard micro-charger connector.
The instructions say to charge it for 2 hours before use, but mine worked straight out of the box.
It is less-than-wallet sized, and fits comfortably in the front pocket of my jeans.

The Sensor Pack(s)
I received 2 separate boxes, containing the 2 sensors which come as part of the Starter Pack.
Each sensor box comes in two sealed plastic "cups", which, when you unseal them, you push together to insert the (very small) needle into the applicator part.
You need to use the medicated wipes (included) to clean the area where you intend to apply the sensor, then press firmly to secure the sensor in place. It says to secure the sensor to the back of your upper arm.
From my research on the web, I recommend holding it in place for around 60 secs, to ensure it fixed. However, I didn't, and mine has still remained firmly fixed after now 7 days.
Each sensor lasts 2 weeks, and the reader gives you a "countdown" to how many days the sensor has left in it.

Getting Started
The instructions say to wait 24 hours to allow the sensor to "settle" - however, (like most people I guess), I took my 1st reading as soon as the sensor had gathered enough "data", which I think was about 1 hour.
I think what it means is that the accuracy of the readings may take 24 hours to "settle", but I didn't read it right in my enthusiasm to get going.

So there I have it...
Easy delivery, easy to figure out, easy (and painless) to fit, so now all I have to do is use it..!

 

[Peter_Sylvester]

My first couple of days...
I was really keen to get going, so I just dived in..!

(1) I started by taking readings just before meals, as I had been guided to do with my normal test strips. After initial "high" readings in the first 24 hours (which frightened the life out of me), my readings then returned to what I had previously accepted as my "normal" range on the second and subsequent days.
(2) After a bit of research on the interweb thingy, I found that this may well be the sensor "finding its own level", so my recommendation to anyone reading this is to follow the suggestion of @Squire Fulwood (further up this thread), curb your enthusiasm, and wait 24 hours .
(3) If you are like me, and cannot wait, then go ahead and test away every 30 minutes - but don't take any real notice of the actual readings at this early stage. Use it as a period to acclimatise yourself with the usage of the machine.

I was initially concerned about catching the sensor on my shirt sleeve, "shielding" it in the shower, pain or discomfort when having this needle permanently attached to a "delicate" part of my left arm, etc etc.
There was no need for me to stress myself.

I have had no discomfort and no catching on my shirt sleeves - despite the fact that it is positioned fairly close to the hem of my sleeve.

One big plus...
I was really surprised that I can take the reading of the sensor through my clothes - even a thick coat which I was wearing to combat the start of our English winter period. (6 degrees and frost on the ground on Saturday).

So now I can take my test quickly, discreetly and regularly - so allowing me to take swift and effective action as needed.

I am also learning a lot about my "trends" - more of that soon...

 

[Peter_Sylvester]

LIBRE TRENDS - My 1st Discovery
I was amazed to discover that my BG readings actually INCREASE overnight - something that my normal testing regime had never highlighted. How do they do that when I am fasting..?

It appears that I suffer from something called the "Dawn Phenomenon", where, and I can volunteer this now after more research on the Interweb Thingy, your body starts to "gear up for action" before you even wake up in the morning.

In my case, my liver ( I think ) appears to release energy at around 4:00 am in the morning, with the result that, whilst I am physically on my way down the stairs at 6:00, by BG readings are already on their way up the ladder scale..!

When I then have a "hearty breakfast", the two seem to combine, and my BG levels take a HUGE spike, which then means that my body takes most of the morning trying to bring things back into balance..!

When it does take action, then it appears that I am open to a HYPO at around 11:00 - and I then have to take a snack to combat the body shakes, tremors, confusion and other re-actions...

I found this article thanks to someone else on this group, and I am now actively developing a strategy to overcome this impact on my mornings...
https://idmprogram.com/dawn-phenomenon-t2d-8/

On closer inspection of my overnight timeline, I have noticed a significant dip at around 3:00 am, and on 2 occasions, I have suffered a HYPO ( below 3.0 ) - even though I didn't know it..! My body has re-acted accordingly, and my body therefore naturally released a Growth Hormone combination, which means that they counter the blood sugar lowering effects of insulin, which in turn raises blood sugars.

WHO'D HAVE THOUGHT IT..??

Libre has already shone a light on my 1st target action, which has been bemusing me for the past 3 years...

 

[Peter_Sylvester]

Libre Availability on NHS - Good News / Bad News
(31st October - 16:00 hrs)

There has been a lot of hype about the fact that the FreeStyle Libre will be available for re-imbursement on the NHS effective 1st November - so I took the opportunity to ask my Diabetic Clinician at my review this afternoon.

And the GOOD NEWS is...
YES - the Freestyle Libre system WILL be available on the NHS from 1st November 2017 (tomorrow) - HURRAH

The Not-So-Good NEWS is...
Every patient will have to be assessed, and go through a set of "priority evaluation" criteria.

The expectation is that they will be "released" to patients in the following order:
(A) Children with Type 1 Diabetes
(B) Adults with Type 1 Diabetes who are struggling to make progress
(C) Adults with Type 1 Diabetes who could benefit from more detailed analysis
*At this point, I really stopped listening, because Type 2 Diabetes sufferers like me came a long way down the list.

So, just bite the bullet, Peter, and be prepared to raid the money tree at the bottom of the garden for the foreseeable future......

 

[Squire Fulwood]

The Not-So-Good NEWS is...
Every patient will have to be assessed, and go through a set of "priority evaluation" criteria.

The expectation is that they will be "released" to patients in the following order:
(A) Children with Type 1 Diabetes
(B) Adults with Type 1 Diabetes who are struggling to make progress
(C) Adults with Type 1 Diabetes who could benefit from more detailed analysis
*At this point, I really stopped listening, because Type 2 Diabetes sufferers like me came a long way down the list.

So, just bite the bullet, Peter, and be prepared to raid the money tree at the bottom of the garden for the foreseeable future......

N.I.C.E guidelines don't even mention self testing for T2's by any method so those are your chances. It is true that I was given a meter and it is true that I am a T2 but it is also true that when I used a pot of test strips in less than a month they were taken off my prescription. I don't think there is much chance of them giving me a Libre.

 

[Peter_Sylvester]

N.I.C.E guidelines don't even mention self testing for T2's by any method so those are your chances. It is true that I was given a meter and it is true that I am a T2 but it is also true that when I used a pot of test strips in less than a month they were taken off my prescription. I don't think there is much chance of them giving me a Libre.

@Squire Fulwood - it looks like you and me should start a "We Don't Qualify" club... !!
I wonder how many others would qualify to join our club..?
#WeDontQualify

 

[Bluetit1802]

On closer inspection of my overnight timeline, I have noticed a significant dip at around 3:00 am, and on 2 occasions, I have suffered a HYPO ( below 3.0 ) - even though I didn't know it..! My body has re-acted accordingly, and my body therefore naturally released a Growth Hormone combination, which means that they counter the blood sugar lowering effects of insulin, which in turn raises blood sugars.

When in bed we are very likely to be lying on the sensor at some point. I often have ridiculously low readings when asleep. I ignore them. Several people on here report the same thing.

Another tip - are you waiting 10 to 15 minutes between a finger prick test and a reader scan? It is necessary to do this because interstitial fluid runs 10 to 15 minutes behind capillary blood. I mention finger pricks because it is necessary to do some calibration between the two to calculate how close your sensor is to your meter - I do some each day for the first few days, making sure I do them after fasting or before meals, and also after meals when I am likely to be higher.

I am following your thread with interest.

 

[Peter_Sylvester]

When in bed we are very likely to be lying on the sensor at some point. I often have ridiculously low readings when asleep. I ignore them. Several people on here report the same thing.

Another tip - are you waiting 10 to 15 minutes between a finger prick test and a reader scan? It is necessary to do this because interstitial fluid runs 10 to 15 minutes behind capillary blood. I mention finger pricks because it is necessary to do some calibration between the two to calculate how close your sensor is to your meter - I do some each day for the first few days, making sure I do them after fasting or before meals, and also after meals when I am likely to be higher.

I am following your thread with interest.

Thank you @Bluetit1802 - great advice.
I am still trying to get my head around the mass of NEW information that is coming my way after deciding to use a Libre.
Over the next few weeks, I will undoubtedly filter the information better, clarify its implications, and refine my plan & actions.
I will share on here, and I hope it is useful when I do.

In the meantime, I am drawing a great deal of inspiration from comments by you and people like you - please keep it coming..!

BTW - I love your tagline...
Tough times don't last. Tough people do.

Epic..!

 

[Mbaker]

I would say it might be prudent to ensure the Libre is reading accurately with a manual prick test (which also has a degree of variance), as you may not have been hypo, I don't know if is where I place the Libre but I was getting readings of 2.4 and early 3's. I could only use the Libre to assess trends in my case.

 

[Ixarix]

I just got my Libre yesterday. It was pretty easy to attach and start up. I was advised to take the first days readings with a grain of salt as they will likely be off by quite a bit. It is close to 24 hours and hopefully it should be properly calibrated soon. I really like it. I have to learn to read the meter and compare to my blood glucose meter.

 

[Peter_Sylvester]

I just got my Libre yesterday. It was pretty easy to attach and start up. I was advised to take the first days readings with a grain of salt as they will likely be off by quite a bit. It is close to 24 hours and hopefully it should be properly calibrated soon. I really like it. I have to learn to read the meter and compare to my blood glucose meter.

Hi @Ixarix
If my experience helps, it will take about 2 days to "settle". Try also testing the "old fashioned way" also, and this will give you a comparison.
When you connect it to your computer, you get loads of detailed stats and graphs, and in my case, once it had been taking readings for about a week, it "unlocked" more detailed assessments.
I am now in information overload, so at the moment, I am just trying to understand the detail, clarify the implications, and refine my plan & actions.
Good luck - I am only 7 days ahead of you, but happy to share my experiences.
Peter

 

[Ixarix]

Hi @Ixarix
If my experience helps, it will take about 2 days to "settle". Try also testing the "old fashioned way" also, and this will give you a comparison.
When you connect it to your computer, you get loads of detailed stats and graphs, and in my case, once it had been taking readings for about a week, it "unlocked" more detailed assessments.
I am now in information overload, so at the moment, I am just trying to understand the detail, clarify the implications, and refine my plan & actions.
Good luck - I am only 7 days ahead of you, but happy to share my experiences.
Peter

My endocrinologist recommended continuing to test the old way for a couple days still. I haven't tried connecting it to my computer yet.

 

[Squire Fulwood]

@Squire Fulwood - it looks like you and me should start a "We Don't Qualify" club... !!
I wonder how many others would qualify to join our club..?
#WeDontQualify

In terms of not being qualified to get one from the NHS I think there will be quite a few of us. You have to remember that at the moment a significant majority of T2's have to buy their own conventional meter.

 

[Peter_Sylvester]

LIBRE TRENDS - The results are in..!

And so it was that, just one week after I started using a Freestyle Libre, it was time for my normal 6 months diabetic review.

Overall, my diabetic clinician was very happy - the results were "GOOD" she said, and my HbA1c was stable at 7.0. She seemed very pleased, and so was I (especially since I had dropped my Gliclazide tablet over the last 6 months)

When I then explained to her that I had made a major mistake by changing my diet to be heavily laden with fruit in the few weeks running up to the blood test, and only realising my mistake 4 days before giving the sample, she was even more impressed with the result.

We then hit a major issue when I told her that I had decided to invest in a FreeStyle Libre - with or without NHS. I explained that I had only been doing it for the last 7 days, and that I was amazed at the detail and trends that were now at my fingertips.

AND THEN AN AMAZING THING HAPPENED...

We then spent a full 25 minutes - YES 25 minutes - going through the various reports that I had been able to print off from the short life of my Libre stats. I think she was as excited as I was.

Since when do you get 10 minutes with a clinician these days - let alone 25..!

We looked at the trends, the spikes, the recovery times and a particular quirk for me, the Dawn Phenomenon. (There were times when I thought that maybe I knew more about the Dawn Phenomenon, its causes and its treatment than she did, but I may be wrong)

The Libre 7 day reports were showing an average of 6.8 - which again was encouraging.

Anyway - the bottom line is that we have developed a detailed plan for the next six months, and she has given me "approval" to try out a few things with my Metformin - on the strict understanding that I monitor the effects closely with a combination of my Libre and strip testing.

Happy..? - Too right I am happy.
Moving Forward..? - Too right I am..!

 

[Circuspony]

I suspect there are many clinicians who would like all their diabetic patients on Libre - but the £££ won't allow it!

Really good blog / post. I'm thinking of self investing so interested in feedback from people who are using them

 

[Peter_Sylvester]

It is early days for me yet @Circuspony - but so far I have been very satisfied with the visibility of the results.
For me, that factor was key to understanding my next steps.
I will keep posting and sharing, and if there are any specific questions about my own experiences, then just ask - I am happy to share (if I know the answer)
Peter

 

[Peter_Sylvester]

Libre - How to save money..!
I have now decided to take the plunge, and to make a longer term commitment to the FreeStyle Libre system.

So as I start to research how I can save money on my future purchases, I have discovered these ways (so far)...

As you get to checkout, you can do 2 things to reduce your final invoice...

(1) You can get the VAT amount removed
You should be given an option to declare yourself as diabetic and therefore VAT exempt during the checkout. This will happen when you place your (first) order on the Freestyle site. There's a form to fill in and this info gets stored with the rest of your customer info, and for subsequent orders you just need to tick the exemption option. Thats a 20% discount in the bag..!
(2) Get free delivery
When you order directly from Abbott (which is the only way that I have found to get supplies without paying a premium price), the system will add delivery costs. However, you can add a Promotion Code which will zero that cost. The code seems to change each month, and I have discovered these codes so far...
October 2017 - BCCFRD10
November 2017 - BCCFRD11
The codes only last for one month, and I would suspect that the code for December 2017 will be BCCFRD12

I suspect that there will be other codes, and please be assured that i will post them here as and when I uncover them...

Oh - and one last thing...
i found (by accident) that if you place an order in your Basket on the Freestyle Shop, but then DO NOT COMPLETE IT (just leave it unfinished), then within 24 hours, Abbott will send you an email with a Promo Code. It says that it will get you order delivered for free, and I just wonder if their system would offer further discounts if you leave items in the basket for longer periods. I will try, and let you know what happens...!

Good luck with your investment.
Peter

 

[Peter_Sylvester]

LIBRE : My 1st Success..!
Wednesday 1st November 2017

Following my first week of usage of my new FreeStyle Libre gizmo, and a very positive Diabetic review yesterday, I have now been getting more and more comfortable and confident with the impact and combination of stats, food and exercise...

And BINGO - today I have had my 1st success.

This morning, I still suffered from my usual "Dawn Phenomenon" early morning spike, but rather than add to it with breakfast, I changed the timing of my breakfast and the administration of my Metformin medication.

The result was that I managed to stay within the "tramlines" of my target range on the system.

With no big morning spike, it was easier to be able to review the timing of my exercise for the rest of the day, and also slightly vary my meal times. With the addition of a Protein Snack mid afternoon, I have now been able to go through a full day without going outside the "tramlines"...!

HOORAH..!

I have to say that could not have done that without the data provided to me by the Libre reports - and would not have felt comfortable even trying it without regular checking.

I am guessing that I have checked my stats every 45 minutes to one hour, and been able to adjust accordingly.
It is also something something that would have been impossible ( and highly uncomfortable ) if I had tried to do it with normal blood testing strips.

So, tonight I am feeling very self-satisfied.
Now to find ways to tackle that Dawn Phenomenon thing...!
Peter