Guest blog: #FreeToDream with Abbott’s Freestyle Libre – by Joanne Hallsworth

libre heart

Amy and I recently got an invite to attend Abbot’s FreeToDream event as bloggers but unfortunately we couldn’t attend, so I offered Abbott the opportunity for any of the attendees who wanted to to write a guest blog about their use of Libre or the FreeToDream event.

Abbott have had no involvement in this article, the words are Joanne’s and only Joanne’s.
No goods/money/services have been received for this article, but in true transparency I can say that Amy will be doing a trial of the Libre and we will blog about that later.

Anyway, here’s Joanne and her story, in her own words…

Our family

Firstly I wanted to introduce my Family. My name is Joanne, I have a husband Graham & we have 3 fantastic kids; Morgan who’s 14, really smart and loves cheer leading; Lily, who is 13 and a competitive gymnast; Archie “the warrior”, who lives and breathes lacrosse and loves being outdoors.


12919591_10207972851532039_1219485698_oMorgan scans her Libre sensor

When Morgan was in year 6, aged 10 ¾ she was diagnosed with type 1 diabetes. It was such a shock I can’t tell you! I didn’t even know what diabetes was if I am honest. At the time I was working full time for Northpoint Mortgage Lenders as a mortgage advisor, but the reality of having to learn all about the illness, the demands, the time off needed, understanding carb counting, insulin ratios and all the new technology that went with diabetes, and not to mention the grief of the life I thought it had taken from her.
It was too much, I gave up work to be the best carer I could be and worked hard to achieve the best outcome from anything the hospital would give me. I read everything, I joined a support group and I took every opportunity to make it as easy for Morgan as possible.
I managed to get in some kind of routine after a year, and found we had accepted it and it would not define her. We got her on a pump and even tried Dexcom from the hospital, but to be honest when we took a well-earned family holiday, the alarms nearly drove me crackers!


12915081_10207972852492063_353426253_oArchie finds it easy to scan his Libre sensor

In June 2012 Archie wet the bed a couple of times (he had been dry since he was 2), I did a quick keytone test as anyone who is ill in my house gets one! But I never expected it to be positive, he was 4+ and a further blood sugar test on Morgan’s meter scarily showed he was HIGH, not even reading what a lab test told us later was 33mmols! My husband was in shock, he kept saying it couldn’t be true.
Archie was scared and by midnight we were in bed in the treehouse at Stepping Hill having those first doses of insulin! He coped amazingly doing his own first jab within 24 hours and I asked to go home straight away the next day so we could process it as a family. The scales were already in play in the kitchen and the double carb counting began.

Trying Abbott’s Freestyle Libre

12896479_10207972851852047_1555823320_oMorgan checks her glucose levels over the last 8 hours

The sleepless nights have been horrendous, if one is high the other is low, I check them about 3 times per night, but it’s OK because sleep is for wimps !!
A friend told me about Freestyle Libre so I instantly read up and liked what I saw. I put my name on the waiting list and hoped for the best.
We were the most excited we have ever been to see the postman when it arrived.
I wish I could say we didn’t love it straight away – because it was so expensive – but we did.
Almost immediately it became a permanent fixture for both children.The knowledge was power instantly. Seeing the graph that was like a mountain range at best, it was a challenge, so I rolled my sleeves up and got stuck in, a bit at a time working out why it was high or low, picking away at it to make it better, taking back some control. We started pre bolusing breakfast a few minutes a day till we lost the spike and just carried on from there.

Money well spent

A recent high point was Archie’s hospital appointment where the consultant looked in awe at the flat night graphs for 5 days in target range and reported that his HBA1c had dropped from 60 to 52 – all the money we had spent had been worth it!
Morgan’s first appointment went well too – HbA1c has dropped from 69 to 62 (7.8%) – she loves the FreeStyle Libre – proudly doing corrections to achieve a better graph and beat Archie!

A quick video of Archie having a new sensor put on

The FreeToDream sleepover at the London Planetarium

12899506_10207972852292058_1159590851_oArchie scans again, it’s so easy

The icing on the cake was a message from Abbott Diabetes Care, saying that Archie has been selected to join an educational sleepover, the first I am aware of for children with type 1 diabetes, at the London Planetarium! I didn’t even tell him I had entered because I can’t even win a cracker! I couldn’t wait to pick him up and tell him. He has always wanted to go to London so even this was a dream come true for him but it was so expensive to take the whole family. So we ordered an oyster card, studied the tube map and off we went.
When we arrived at the Planetarium diabetes suddenly became the new normal, sugar free drinks on top of the table, hypo drinks below, everyone counting carbs and doing injections. The FreeStyle Libre came into its own again as Archie kept me updated with his scans and couldn’t wait to get off with his new friends and join in the fun. The trip to the stars was sensational, I don’t know about Archie but I felt as excited as a 10 year old after that!
The kids escaped to play games and carry out science experiments, and we found out about the problems we may have with teenagers living with type 1 diabetes. It was hard for some to hear but having Morgan, although she is very sensible, gave great insight into the teenage diabetics mind.
Night-time at the Planetarium was no different to my house, we started with a hypo and soon settled after a bit of Lucozade and a sleepy biscuit.

So in conclusion…

The relief of having a 10 second blood sugar with no pain can’t be measured, and I will do anything to keep it for them.
Archie’s FreeStyle Libre has given him freedom to take control over his diabetes. He can play lacrosse safely 3-4 times per week, as with a quick scan and a jelly baby there is no stopping him.
I can do three lightning scans a night spread over 2 bedrooms and get back to bed before the pillow goes cold.
And Morgan can check her blood quicker than her snapchat!
It’s all good here!

Abbott Freestyle Libre, Nightscout and Glimp #WeAreNotWaiting

We’ve been using Nightscout on and off for a year now, since I built our xDrip in January 2015. It’s been a brilliant tool and has helped reduce glucose levels, whilst evening them out too and giving us a safety net during the night. It’s availability on any browser, smartphone or smartwatch is just brilliant.

A friend whose daughter has used the Abbott Freestyle Libre for a year had followed our progress with Nightscout and told me how she would love it but just couldn’t see her daughter switching to DexcomG4.

It got me thinking.
I wondered if Nightscout could be beneficial to a Libre user and it suddenly dawned on me that it would be very useful for kids/parents in a preschool/school or sleepover situation: wouldn’t it be great if the school carer or sleepover parent could just scan the child’s sensor and the parent would remotely get to see the current glucose situation. If things are on track the parent can relax, if not they could perhaps call or text the person caring for their child.
Yes, using Nightscout with Libre had many possibilities.

It got me searching to see if there were any phone apps which could scan the Libre sensor and get the data onto a NFC compatible phone, that’s when I found Glimp. Glimp can already save data to Dropbox which means its developer, Carlo, is well versed in using cloud storage, Nightscout could be added if he had the time.
To use Glimp you need an Android phone with NFC compability, many Android phones have this feature…although typically not mine (MotoG 2nd edition).

Is anyone using Glimp?

I joined a Libre group on Facebook to ask if anyone already used Glimp. There were quite a few responses, many seemed keen on the potential.
anyone using glimp

Hey Carlo, would you mind…

A few days later I sent an email to Carlo who responded with much interest and started looking into Nightscout.
Email exchanges meant I could point Carlo towards the Nightscout API documentation and get John Costik and John Stevens on standby if Carlo needed assistance.
He didn’t.

A work in progress

Carlo was great at keeping me updated with his progress, which I passed on to the Facebook group.
It really didn’t take Carlo long to get data into Nightscout and by 18th December he’d emailed me some images to show others.
carlo is not waiting

The first results

On the 27th December – merely a couple of weeks after Carlo had all the Nightscout information he need – Carlo had it all working. It was time for a big announcemnt.
I was amazed at the number of people who wanted to test it and get Nightscout up and running.
glimp testers required

An untapped demand

In the next couple of weeks more and more people were setting it up, testing it and really loving it. There were a couple of reports of sensors dying but very few in comparison to the number of people using Glimp.
Parents really see a benefit in connecting Libre to Nightscout and that’s what this was all about.

Fancy using Glimp to get your Libre data into Nightscout?

You can find Glimp in the Google Play Store.
You can find the documentation on setting up a Nightscout web site and database at
Once Nightscout is set up you simply going into Glimp’s settings and enter your Nightscout web site address and your special API key you set up during the Nightscout install.
And the best part? Everything is free.

Thank you Carlo

I can’t thank Carlo enough for linking Glimp to Nightscout, he really knows how to Pay It Forward.

Setting up Glimp and Nightscout

If you would like to set up Glimp and Nightscout please take a look at the guide Amy Cowen has done: Nightscout for FreeStyle Libre

Freestyle Libre – hypos, hypers, hype and hope


With Abbott’s Freestyle Libre launch at the EASD conference on Monday the excitement in the diabetes online community is hotting up, with some getting their hands on the device already.
(If you’ve not heard of Libre before perhaps read this: Abbott Freestyle Libre Flash Glucose Monitoring: no more fingerpricks?.)
The full facts about the product are not yet out but there’s quite a lot of rumours going around and the following seems to pop up all over the place:
– Cost, the initial starter kit will be £135 and will include two sensors which cost £48 each thereafter.
– Sensors, last for two weeks, no more, no less.
– NHS will initially not be funding Libre although there are funded trials going on and may well be special cases for individuals.
– Libre will only be available to 18 year olds and over, the kids licence will hopefully come along soon (I’ve heard that before).

Here’s a video from Abbott about getting started with a Libre, including inserting a new sensor which seems very easy:

Hypos & Hypers

We’ve started using CGM (continuous glucose monitoring) alongside Amy’s Animas Vibe pump to help with hypos and hypers. The CGM alerts whenever Amy goes high or low, Libre won’t do that.
We use CGM to get data to recognise patterns and make adjustments to Amy’s insulin pump’s basal profile. Libre will do that.
We experiment with different combo/wave boluses for different foods and view the results on CGM to see how to do it better the next time. Libre will do that.
In a hypo situation it’s crucial to know whether the most recent treatment of glucose is working and levels are coming up, CGM doesn’t react fast enough so isn’t used for this only blood checks will do. This will be interesting how Libre compares to Dexcom as Dexcom samples every 5 minutes and has about a 5 minute lag, so you could be up to 10 minutes out. Libre though samples every minute but what is it’s lag? If it’s close to Dexcom then it might be up to 6 minutes out, but if it’s closer to older CGMs it could be up to 16 minutes out.


Without seeing results of trials this product gives me hope for Amy’s future, hope that technology is moving so fast at the moment that even without a cure her life will be more bearable on a day-to-day basis, more hope that this will lead to lower HbA1c’s (without hypos/hypers) and no complications.
Day-to-day it might be able to relieve the soreness of her fingers.
During the night it will mean we can check her levels more easily when she’s asleep. She has a habit of lying on her pump which means I can’t get to it without waking her up.
I hope that this device becomes a mainstream alternative to fingerstick tests and NICE/NHS will fund it on the basis of a lot less test strips being used. I would also be happy to co-fund it like others in my clinic do for the Omnipod insulin pump.

A great start to using CGM to get the bigger picture

wpid-20140619_173616.jpgA few weeks ago on the 18th June Amy inserted her first CGM sensor. On the 12th July she took it off.
It lasted 25 days.

Initially it was very exciting seeing how accurate Dexcom was in comparison to Amy’s normal finger-stick checks, seeing those graphs, flipping between 1 hour graphs, 3 hours, 6, 12, 24.
Then it felt scary: how high she had gone after a meal, how high during the night, the fast dropping blood glucose levels, the lows after school.
Then it felt like we could put this information to use and start to alter Amy’s basal/background insulin levels. That is after all one of the key reasons we got it.

A screen full of information


The screen shows a lot of information:
The red line is the level where Amy will get alerted that she’s ‘high’, we’ve set it at 13.3mmol/L.
The blue line is the level where Amy will get alerts that she’s ‘low’, we’ve set it at 4.4mmol/L.
The dotted green line is her CGM trace which believe me doesn’t often look that flat, it’s more like a section of the alps or England’s rolling hills.
So in the blink of an eye you can see it’s 13:56 and Amy is currently 6.7mmol/L and rising, steadily, because at 1pm (one yellow mark from the right) having slept in really (really) late she woke up and had lunch 30 minutes later.

An opportunity for experimenting and learning

Combo bolus (60/40/2.5hrs) for Rice/CurryCombo bolus (60/40/2.5hrs) for Rice/Curry

Some graphs don’t initially look very good at all, but they are as they’re always opportunities for learning. Take the one on the right, it’s a graph of us experimenting with eating a Chicken Xacuti curry and rice and giving a combo-bolus on the pump of 60% of the insulin immediately and the remaining 40% over 2.5 hours. It tells us a lot…don’t eat rice (joke).
From the graph we can tell that need to give less insulin up front so we’ll probably try a 40%/60% next time. We know this because she started at 6.5mmol/L and dropped to 3mmol/L(ish) within the first 90 minutes.

Analysing the averages

Unfortunately the previous graph isn’t too much use because at that time Amy’s basal/background insulin was wrong and her levels were high from 10pm until about 4am.
How do we know? We uploaded the CGM data to Diasend and analysed it, although at first it didn’t make us feel very good to see what was really going on:


That looks all very confusing but the two key things look at are the green bar (which is the magic zone of between 4mmol/L and 8mmol/L) and the red line which shows the average blood glucose levels for each particular time of the day.
It tell us we have a problem: she’s rarely in that magic range, her average is too high, she needs more basal/background insulin.

The foundations need some work

Deciding to focus on the night time of 10pm to 8am we didn’t do any changes to her basal profile for two weeks as we wanted to discuss the CGM results with the nurse at clinic. We all agreed on the changes required and then watched the next few nights’ graphs, making some tweaks here and there, before finally getting the graph below, although we’ll make sure she’s a little higher when she goes to bed from now on.

CGM: we’re live with Animas/Dexcom

pink-vibe-sniggerOn Wednesday last week, Amy fitted her own Dexcom CGM for the first time, going live with something she’d (and we’d) been looking forward too for almost a year, 363 days in fact since she got her pump on 20th June 2013.

It was back in March that Animas announced that they had got the licence to sell Dexcom kit for use by kids aged 2-18 but communications dried up and on an off-chance call to them back in May I managed to purchase the kit required: 4 sensors and 1 transmitter at a cost of £500. Typically since we’d been waiting the price had gone up £50. We could have purchased CGM through another reseller for more money and got it a year ago but I wanted the support from two important people, our clinic and Animas. Ultimately I feel this was worth waiting for but I wonder how much support we’ll actually need.

Trying to be prepared I researched what else we might need for the CGM and purchased some funky pink Camo Rock Tape (thanks Rachel), some SkinTac (thanks Carolyn/Shaun) and importantly TacAway too. Another parent suggested that we start without using these things as we needed to make sure Amy wasn’t allergic or sensitive to the Dexcom adhesive.

Amy with new sensorFitting day arrived and all four of us went to meet our rep Emma at the hospital, along with 2 DSNs and a student nurse. As well as being the first people at clinic to have an Animas Vibe it turns out we’re the first to get Dexcom too, so our DSNs were keen to find out all about it. It’s great to have their support.

Emma explained about the kit, showing demo pumps and we went through our expectations of CGM, with Amy saying all the things Emma and the DSNs wanted to hear (spot patterns, basal checking, alerting). Normally Emma would show people some videos about sensor insertion but Amy and I had already watched the great sensor insertion videos by Diabetic Danicaarm insertion video here – so we skipped that part.

With a demo/fake sensor inserter Emma went through the routine slowly for all to see. Within minutes Amy was doing it although as it was the first time she asked Jane to do the initial plunger part. With the transmitter clipped in to the sensor Amy set up her pump to recognise the transmitter and all the other CGM settings (alerts, sounds, ranges).

Amy said the the sensor insertion was easy and painless, although she could feel something it wasn’t painful.

Then it was a case of waiting for two hours until it was time to do the two start up calibration blood checks, something you only do each time you change the sensor. Whilst waiting the Vibe gives you a count down meter which Amy kept checking during the next two hours, keen to calibrate and see her BGs on the screen. The two hour mark came just as we were waiting for the Park&Ride bus to turn up; Amy got out her meter, “no Amy let’s wait til we’re back in the car”. But Amy didn’t wait, she did the tests on the bus and smiled at seeing her glucose level on the screen.

One of the reasons for getting CGM was to make sure Amy’s basal profile was correct whilst asleep, how about this for starters (although I doubt it will stay this good):
A sleeping teenager's basal profile

The wait is (almost) over – CGM, Animas, Dexcom and Kids

Earlier this week I blogged about waiting for Animas to get their licence to sell Dexcom G4 for use by kids and how the Diabetes Online Document (#DOC) rumour mill was suggesting an announcement would happen soon.

That announcement was rumoured to be tomorrow at a symposium held by Animas at the Diabetes UK Professional conference in Liverpool.

But it happened today. On Animas’s stall in the exhibition area sat an Animas toy kangaroo wearing a badge which said:

Animas Vibe & CGM system
for children aged 2
years & older

One of my Twitter friends let me know the exciting and now official news:

Making the call to Animas

At lunch time I contacted Animas (0800 055 6606) to try and register for, or buy if possible, the newly approved CGM.
“Hello, I’d like to buy CGM for my daughter who uses an Animas Vibe, now that you’re officially licensed to sell them.” The lady on the other end of the phone was surprised I knew about it but was happy to talk with me.
I was informed the launch date is sometime in April, not April 1st, or the end of April, just at sometime.
I gave my details to be kept on file for them to inform me when they had any news.

And the price?

Animas has had a starter kit deal for some time, certainly from June last year. For £450 that deal gets you a transmitter and a box of 4 sensors.
So I asked if that deal would be still on come April; the conversation went something like this:
Me: “And will the £450 starter deal still be on?”
Animas: “I’m not sure, currently that deal ends on March 31st”.
Me: “Oh great. Well, I’m happy to pay now and just wait until you can send the bits to me.”
Animas: “I’m sorry, we’re not in a position to do that.”
Me: “Oh great.”

Patiently Waiting – CGM, Animas, Dexcom and Kids

In May 2013 we chose Animas for Amy’s pump for many reasons, one of which was that in the future we might like to get CGM (Continuous Glucose Monitoring) and Animas’s in-built CGM display unit would make using CGM cheaper – because we wouldn’t need to purchase Dexcom’s own display unit.

Continuous Glucose Monitoring? What’s that then?

A CGM system consists of a sensor which is worn on the body and has a small wire just under the skin which constantly senses the glucose in the interstitial fluid. This sensor connects to a transmitter which sends data to the receiver – in our case this will be the Animas Vibe insulin pump – which can show the user what their glucose level is like. It’s important to know that as it checks interstitial fluid and not blood that the glucose level can be up to 15 minutes behind the actual glucose level.
The Animas Vibe links up with Dexcom’s G4 system.

CGM, an expensive option

There’s no doubt about it CGM is expensive.
One sensor costs between £45 (Animas) and £62.50 (third party resellers).
Doesn’t sound too bad does it, but then again it’s only guaranteed to last one week. ONE WEEK!
If you used it full time, one sensor per week, plus needing two transmitters per year you’d be looking at paying over £3000 and that’s using the cheapest pricing available.
Luckily some manage to get their sensors to last a fair bit longer than that, bringing the cost down dramatically, but then again that’s going against the advice of Dexcom so I’m not suggesting anyone does it. You don’t have to use CGM full time, you can use it for as long as a sensor lasts, then take a break before put a new one on.

Does anyone really need CGM?

It’s a good question. Many health care professionals would say no, for many reasons. They’re definitely worried about the psychological effects of yet another thing to do for diabetes and I can understand this.
Twenty, possibly even 10 or 5, years ago people weren’t using CGM so why do we need it now?
I guess the truth is that we don’t need it now: by understanding how your body reacts to glucose, insulin, stresses and exercise (etc.) some people can really do well to avoid highs and lows, but doing this takes a lot of effort.
Some people will have a clinical need to use CGM; Amy isn’t one of them.
On the other hand CGM will tell you what’s going on with your glucose level throughout the day, alarming you when you go out of range. It tells you if you’re going up or down or not and it shows what’s been happening over the last so many hours. It effectively performs Basal Tests each and every night something which is done by many pump users or their parents.

Dexcom G4

If you’re in the UK you can purchase sensors, transmitters and the stand alone display unit for Dexcom G4 from third party resellers.
You can do this if you want to use it as an adult.
You can do this if you want to use it for your child, if they’re 2 years old or more.
You don’t even need to get a letter from your hospital to say you or your child has Type 1 Diabetes.

Animas and their Dexcom G4 licence…for adults

Animas are licensed to sell Dexcom sensors and transmitters to adults in the UK. You don’t even have to be an Animas pump user to be able to buy sensors from them.
So if you’re an adult with an Animas Vibe you can purchase Dexcom sensors/transmitters and have CGM displayed on your pump.

Animas and their Dexcom G4 licence…for kids (2-18 years)

We were told in April 2013 that by the time Amy got her pump one month later Animas would have their licence to sell Dexcom G4 sensors/transmitters for use by kids.
It’s never arrived.
We’ve been patiently waiting.
We’ve been getting frustrated at the waiting game.

Where’s the logic?

In the UK anyone can buy Dexcom G4 sensors/transmitters, whether it be from Animas or a third party reseller.
In the UK an adult can buy their Dexcom G4 sensors/transmitters direct from Animas.
In the UK a parent can buy Dexcom G4 sensors/transmitters for their child from a third party reseller.
In the UK a parent CANNOT buy these same things from Animas for their child.
Where’s the logic?
As a computer programmer this drives me mad.
Clearly there’s more to it that I don’t know about.

Finding an alternative method

I’ve been very keen to buy through Animas as their prices are so much lower and effectively it means you can get 11 sensors for the price of 8 bought from a third party reseller. As one sensor can last three or four weeks this means that you’d get at least two if not three months more of sensing by buying from Animas.
We’d been told that our hospital would not fund the CGM (fair enough, it’s expensive and there’s no clinical need) but they would help us talk with Animas. I don’t want to go into detail about this but it’s not happened, I’ve felt very unsupported in our quest and frankly it’s really annoyed me. Nine months after originally asking for support I’ve heard they’ve sent us a letter for us to send to Animas to hopefully prove their support for Amy’s case.
However maybe it’s all too late.

Is that a licence I can see in the distance?

The diabetes online community rumour mill has been working overtime recently.
There’s been talk of Animas holding a meeting/presentation/symposium at the Diabetes UK Professional Conference in Liverpool this week.
There’s been rumours that Animas may well be announcing that they’ve got their licence to sell Dexcom G4 products for kids (aged 2-18).
Recently a post on a Facebook group asked if anyone had heard anything.
They hadn’t.
It started a lot of posting activity, with people emailing or calling their Animas rep, or their Diabetes Specialist Nurse.
Whilst no Animas rep would confirm or deny anything one nurse may well have let the cat of the bag.
It seems quite likely that this week the announcement will be made that April will be the launch date.
But we’ve been here before with rumours of licences and dates so I’ll take this ‘news’ with a pinch of salt.

Of course I really hope this rumour is true.