Seven observations on using the FreeStyle Libre for a week

hand holding FreeStyle libre meter
You will prise this from my cold, dead hand…

Blood, I miss the sight of you… I’d gotten used to those tiny beads that popped from the tips of my fingers several times a day. This week, not so much.

And as misses go, it’s a rubbish one, right?

As the proud new owner of a FreeStyle Libre (may the universe rain her blessings down on NHS Greater Glasgow and Clyde), I know the much-vaunted advantages. Ability to test more often and easily. Probable positive effect on your HbA1c levels (the long-term measure of blood glucose in the body) and reduced likelihood of complications.

Here, then, are my observations on the lesser quoted points you notice when you wear one…

  1. I’m clumsy as heck. Yes, I keep bumping into door frames. Maybe I always have walked into them on a regular basis but when I hit my right arm (the one I’m wearing the sensor on) off a door frame, I notice. Three times in the first four hours of wearing it.
  2. The absence of black dots. Those of us who’ve spent our lives doing five or six blood tests a day (see above) can hold out fingers tips covered in tiny black dots. Occasionally, the skin peels away in protest. Three days in and mine VANISHED.
  3. Oh, the joy of the night-time test! You wake up, roll over, grab the sensor from our bedside table and wave it in the direction of your arm. Voila! The result. No messing around opening that wee case up, taking out the tube of sticks, popping it open, finding a stick and taking three attempts to insert it into meter, pricking your finger and missing the stick with the dot of blood, etc. And all done in the dark because you don’t want to disturb your other half.
  4. No more vampire impressions. I did blood tests on public transport, in offices, when out and about, in the gym, the cinema, the pub, restaurants and more. And I was discreet about it, but when your finger bleeds you suck it to get rid of the excess, right? Some folks think that is disgusting or that you should always wipe it on a tissue or surgical wipe. Who has the foresight to carry all that around as well as everything else?
  5. Having to remind yourself you can test whenever the heck you want. I’ll get used to the feeling quickly but I’m still adjusting. Shall I test again? No, no I only pricked my finger an hour ago and I’m only prescribed XX amount of sticks every months so no… Stop right there, lady. Shall I run the meter over my sensor again? Yes, yes, yes!*
  6. Staring at your graph. Oh the fascination of watching what your blood sugar levels get up to over eight hours. Telling yourself you will record this properly, oh yes you will, and work out patterns so you can make educated adjustments, rather than relying on guesswork.
  7. Missing the sight of blood. As you might have guessed, the intro to this piece was a big, fat lie. I’m one hundred percent happy that bloody fingers are a thing of the past (ish, you still have to do some).

* Ten’s the recommendation, in case you were wondering. Too many’s not good on the sanity levels.

My people all together – #type1diabetes

blood testing equipment type 1 diabetesEver sat in a room and thought, “I am with my people”? That was my experience this week as I attended an education session the NHS had put on; my attendance a condition for prescription of the Abbot FreeStyle Libre.

I doubt I’ve ever been in a room with so many other type 1 diabetics. Sure, type 1 is a hidden condition. Perhaps others travel on trains with me or flit about the offices of the University of Glasgow dropping their test strips wherever they go?* Still, my original statement holds. I reckoned on about 200 people there, with perhaps a third of them partners or parents.

All shapes and sizes

I arrived at the Queen Elizabeth University Hospital early and watched in fascination as folks trooped in to the lecture theatre. We come in all shapes and sizes—all ages, all colours and all creeds. Who were the ones with diabetes? I put it down to those of us who carried our precious bag—the FreeStyle Libre and the doctor’s letter handed out when we registered—tightly. I’d expected lots of young people, but that wasn’t the case. The average age, I reckon, was mid to late 30s. Every time I saw someone who looked a lot older come in, I cheered silently.

Take that, reduced life span, and shove it where the sun don’t shine.

Our session took the form of a PowerPoint presentation by one of the diabetologists at the hospital, followed by some Q and As. I didn’t bother asking anything. As an introvert, I’m not going to raise my hand in a room that full of folks—even if they are my people. But there were plenty who didn’t suffer from shyness who dived in.

Can you scan your sensor through clothes? Yup. (So handy!)

Can you swim with it? Yes, but only half an hour is recommended. (Seriously, do people swim for longer than that? It’s the world’s most boring form of exercise unless you’re in open water.)

How long does it take for the prescription to come through once you hand the letter to your doctor? About 48 hours.

Can you connect it to your phone? Yes—there’s an app for it.

What happens if it keeps falling off? Some people have slippier skin than others. Thankfully, the two times I tried the sensor it stayed in place for its allotted fourteen days.

Talking to my people

I longed to talk to my people, but didn’t. See above-mentioned introvert tendencies. Who would I have chosen? The Indian girl who talked about running, exercising and wearing a sensor? The man behind me who asked if the Libre 2—the one with alarms that sound if your blood sugar levels go up or down too rapidly—would be available for us in the future? The glamorous young couple where I couldn’t work out which one would hold out the fingers covered in black dots from too much finger-pricking?

No. The one I’d have picked out was the woman I guessed to be in her late 30s who came in with an older man and woman I took to be her mum and dad. I watched her sit down near me and wiped away a wee tear. That might have been me once upon a time, attending with my lovely, supportive ma and pa. My father died nine years ago and how I’d love to have shared this new, wonderful development in diabetes care with him.

Session over, my precious bag and I got onto the bus to go home. “A new chapter, Emma B,” I said to myself. “How terribly exciting.”

*About to become a non-problem. Yay!

Approved for Flash Glucose Monitoring!

Cheerio oh meter – you are about to become a thing of the past. Ditto that test result too.

Joyous news, friends… I’ve received approval for funding for the FreeStyle Libre flash glucose monitoring system.

Oh, what changes this will bring! Firstly, there’s the ease thing. I often sit down for dinner, realise I’ve still to do a blood test and groan. Now, it will be a matter of seconds. Take out the reader, scan and voila. I’ll also be able to do TONNES of tests, and catch those pesky sugar levels when they misbehave firing to the top or plunging to the bottom.

As a wild optimist at heart, I tell myself my day to day energy levels will also shoot through the roof – diabetes being much easier when you’re not tired all the time because of glucose level misbehaviour.

Before I receive my very own precious reader and prescription for the thingies you stick on your arm, I’ll need to attend an education session. Once that’s done, a letter wings its way to my GP and she starts prescribing the arm thingies. (Note my fine grasp of the technicalities.)

So, there we go. Happy days! I’ll report back.

The FreeStyle Libre—a two-week report

a sensor and reader on a post on the Diabetes DietYou find me, un-sensored and sad… Yes, I’ve completed two weeks on the FreeStyle Libre sensor and reader system, and now I’m back to finger pricks, at least temporarily.

At my last diabetes clinic appointment, my consultant* agreed that I’m a candidate for flash glucose monitoring (which is different from blood glucose testing, but more on that later) and sent me off with a 14-day sensor while I wait for bureaucracy to kick in.

So, what’s flash glucose monitoring like? For the uninitiated, the system comprises a sensor you wear on the back of your arm and a reader that can be used any time. Type 1 diabetes tends to encourage obsessive compulsive behaviour, and the FreeStyle Libre system facilitates that, though it’s no bad thing.

Where flash glucose monitoring differs from blood testing is that the sensor reads levels from interstitial fluid, so it lags about four and a half minutes behind blood glucose readings. If you drive, the DVLA requires you to do blood tests, rather than scans beforehand to avoid the risk of hypos while driving.

Parents love them because they can check children with type 1 diabetes while they sleep, able to work out if they are risk of a hypo, and they are also routinely prescribed for pregnant women who have diabetes as frequent testing makes it easier to maintain the tight control you need while growing a baby.

The accompanying app can be downloaded by others, who can gain access to your information if you give them permission. Again, something that is useful for parents although such scrutiny would have horrified the teenage diabetic me.

Here’s what I found:

Frequency of testing

After a day or so of overcoming the hesitation—I can’t do another test, I just did one an hour ago… Oh. Yes, I can—I averaged 11 scans a day, and about two blood tests usually at the same time to check accuracy and a few times because I was hypo.

Ease of testing

Easy-peasy-lemon-squeezy! You can use the reader through clothing, it only takes a few seconds. It’s much easier than pulling out a meter, sticks and finger-pricker—especially when you’re out and about.

Accuracy of readings

I had the odd bit of disparity—usually if my blood sugar was low, as the sensor lags behind blood glucose readings. However, most of the blood tests I did at the same time varied only by 0.1 o 0.2 mmol, and I did get hypo readings that registered at the same time.

Sensor adhesion

No issues there. That thing stuck to me for the two weeks. I didn’t do any swimming in that time, so I can’t attest to how well it works in that setting. Nor did I try it out in the sauna/steam room as threatened—though one suggestion a fellow user came up with was using cling film to bind it onto your arm. The reader lasted on the battery charge for the full two weeks too.

Most useful bits

There are lots of things that sell flash glucose monitoring to me—ease and frequency of testing two of them—but there are other super-useful components. One is the pattern tool. You can see where you have the most glucose variability and when you tend to have hypos. In the two-week period, I had (ahem) 17 low glucose events, most of them between 11am and 5pm and that corresponded with the time of day I have most glucose variability.

I’ve never been good at logging my blood tests. It just feels too much like hard work. I know you can download from your meter, but the checks I made on the flash glucose monitor gave me a clear idea of what happens. And, more importantly, some ideas of how to fix it.

The excess hypos may have been because of the half-marathon, which happened not long after I started my 14-day sensor and because I’ve been eating more carbs. As we say in the Diabetes Diet, more carbs mean more insulin. Bigger amounts of insulin mean bigger mistakes. A salutary reminder, then, that it’s back on the low-carb for me.

Thanks too, to Steven Morrison—my blog and book co-author’s son—who emailed me in detail about his own experiences using the FreeStyle Libre. He’s a convert too, and the cling-film tip came from him.

So when does my prescription come in? I’m now on a list for a short course at the hospital and once I’ve taken part in that, the organisers write to my doctor recommending she add sensors to my list of prescribed diabetes medications and gear. Fingers crossed, it doesn’t take too long.

 

* #LovetheNHS

FreeStyle Glucose Monitoring – an Update

freestyle libre on the Diabetes DietHashtag love the NHS—and the NHS in Scotland if we’re going to be specific.

Off I trotted to the diabetic clinic on Thursday armed with my best persuasion skills. Oh pleasy-weasy dear doctor, may I have a FreeStyle Libre flash glucose monitoring system? One of my arguments was going to be—Hey, you won’t be paying for it for too long. Did you see the recent research that tells me I can expect to knock eighteen years off my life expectation?!*

In the end, my polished debate wasn’t needed. Just as well as I couldn’t sell hot-water bottles to the Inuit. Or ice-cold beer to Australian sun-bathers for that matter. I brought the subject up. The doctor queried the number of blood tests I do per day and voila. I’m on a list. I’ll need to go to an education event and after that, a letter wings its way to my GP recommending she prescribes the sensors.

Sensors

Flash glucose monitoring for those of you who aren’t familiar with it is where you wear a sensor on your body (usually your upper arm) and you can take a reading from it using a monitor. It differs from blood testing in that it’s super quick and easy. You don’t need to prick your finger and you can check endlessly and the sensor works through your clothing.

Those of us who tend towards obsessive compulsive disorder—it’s hard not to when you’ve got diabetes—might baulk at that, but I am looking forward to monitoring what happens to me during exercise. And when I’m eating.

The device doesn’t come with an alarm—i.e. a warning when your blood sugar goes too far up or down, or it changes rapidly but there is software for that. The cat lover in me is delighted the manufacturers chose to call the software MiaoMiao, and this sends readings to your phone every five minutes, and will warn you of spikes.

Hello Big Brother!

You can even connect it to others’ devices, so they can monitor you too. I’ll skip that as it feels too Big Brother-y to me. Most type 1s hate other people telling them when they are hypo. Imagine how much worse this would be!

Incidentally, all this new diabetes-related tech has had a knock-on effect on the hospital I go to. Thursday’s clinic was running one hour late because it was so busy. The doctor told me he can’t get the GP support (where a GP handles some of the patients to gain experience in diabetes care), thanks partly to the fast development of new tech.

Our GPs are under so much pressure, it’s too difficult for them to keep up with all the tech that type 1s use these days—pumps, continuous glucose monitoring, flash glucose monitoring, software and more. My appointments have been spaced eight months apart for the last few years and that’s likely to change to a year from now on.

But in the meantime, I have my new toy and a whole heap of questions for Google. Can you wear it in the steam room? How much is MiaoMiao? How many actual blood tests do I still need to do to calibrate the thing?

Thanks again NHS Scotland. I look forward to reporting back.

 

*Whatevs. I debated discussing the research here and decided it wasn’t useful. Doom-laden stuff is such a turn-off isn’t it? 

The Freestyle Libre – New Kit for Type 1 Diabetics

freestyle libreI have a new toy and I LOVE it – the Freestyle Libre, the new glucose monitoring system.

Dr Morrison blogged about the Freestyle Libre earlier this year. I was given one when I attended the diabetic clinic yesterday as an Abbot representative (Abbot make them) was at the clinic and handing out samples.

So what is it? The Freestyle Libre monitors what is called interstitial fluid glucose level via a sensor you attach to your upper arm. The sensor stays in place or 14 days, and you use a reader to scan it and get your glucose levels. It takes a second to do.

What are the pros and cons?

The advantages:

  • No finger pricking
  • No inserting sticks into a machine
  • You can scan through your clothes
  • You can scan as often as you want
  • You get an eight-hour glucose history
  • For parents, you can scan a child while he or she is sleeping to check they are okay
  • There’s a trend arrow that shows you where your glucose levels are heading.

The disadvantages:

  • It can’t replace blood glucose testing. If you are going to drive, you should still test your blood sugar levels beforehand. The same applies if you think you are hypo, and the scan doesn’t show you are.
  • This one’s a biggie… Freestyle Libre isn’t available on the NHS. Sensors need to be replaced every 14 days and they cost £57.95. If you have type 1 diabetes, you can claim relief from VAT which brings the costs down to £48.29. It’s still a huge amount of money, and there’s no way I can afford that.

To keep costs down, you needn’t use the sensor all the time. Perhaps you could use it every few months just to get a clearer idea of how your glucose levels behave over a 14-day period.

I’m told Abbot is working hard to make the sensors available on the NHS. Fingers crossed, hmm? I’m one day into my 14-day trial and I love it.