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.

Diabetes and the ol’ green monster

Me this week. Not attractive, I know

Ah, the green monster… It surfaced this week, startling me with its intensity. I’m talking about jealousy and the mean feelings I experience occasionally in relation to diabetes.

Every week, the mighty search engine that is Google picks out the week’s diabetes news for me. Most of the time, it includes new research, a dose of doom and gloom where scientists and doctors reinforce the lower life expectancy/increased likelihood of contracting a nasty side effect (Gee, thanks folks) and a Daily Express article telling you to eat this food to avoid diabetes*.

This week’s offerings included a video on the BBC where a teenage type 1 spoke about the pump she wears which uses artificial intelligence to monitor her blood sugars and keep them within normal range, and how it will allow her to soar through life. She’s one of the first type 1s to get this pump on the NHS.

Believe me, I know a one minute 55 second film clip tells nothing like the full story. I don’t know the extent of the teenager’s medical background. Her mother, the video showed, found it hard to sleep at nights because she was so worried about her daughter’s overnight hypos. I get it, I get it, I get it…

No awards for long service

But the horrible green monster reared up anyway. “It’s always the young ones,” I muttered, bad-temperedly. There might even have been a self-pitying tear or two. “What about me—don’t I get an award for long service? Thirty seven years with this ruddy condition! There are empty jelly baby packets in landfill sites all over Scotland to prove it**. I wouldn’t mind soaring myself.”

The nasty bout of whingeing was in part triggered by a letter I received this week relating to my progress on the flash glucose monitoring (FGM) waiting list. At my appointment at the diabetic clinic in September last year, the doctor put me on that oh so elusive list. The waiting list was only the start. After that, a mandatory half-day educational course takes place and then a letter wings its way to your GP requesting they prescribe FGM. Still there I was. ON THE LIST!!!

“Happy days, Emma!” I said to myself as I skipped out of the clinic, phoning my mum and then husband to share the good news. They whoop-whooped too.

Patience, not one of my virtues

I waited. And waited. Well, I suppose those half-day courses are over-subscribed,” I said to myself. Friends, patience isn’t among my virtues but I held off writing to the good doctor to request a situation update until the beginning of March. The letter I got in return said there is a cap on funding and until that increases, I’m on a static waiting list.

Again, I get it. Times are tight, but every other type 1 I know sports one of those FGM thingies on their arm, included blasted Theresa May. (Admittedly, I don’t know that many type 1s.)

Here’s the thing—I never envy other people their non-diabetes status. A long time ago, my brain must have told my heart jealousy over the impossibility/unlikeliness of a cure in my lifetime was too much of a wasted effort. But when I read of other diabetics and their access to the latest tools and tech, I glow so green I’m practically radioactive.

The blessings of perspective

Fortunately, perspective kicked in after twenty minutes or so of mumping and moaning to myself. In the US, two senators have launched an investigation into rising insulin prices (585 percent from 2001 to 2015 for Eli Lilly’s Humalog, for instance), and this in the world’s wealthiest country. Many people have tried swapping insulin types and brands, changing to something that might not work as well for them or worse, stopping it or rationing it.

In addition, part of my work at the moment involves communications for a health-based project in two African countries where access to any diabetic medication is seriously limited, and knowledge of how to treat the condition not as wide-spread as it is in the developed world.

I don’t have the latest up to date equipment, but I do have insulin (Brexit fears aside), plenty of test strips and all the other bits and pieces I need. The green monster surfaces from time to time, as I’m sure it does with you. Let it do its whinge-y bit and then remind Madam Monster we do live in the best of times for people with diabetes (country dependent of course). If I’d been born 100 years earlier, I wouldn’t have made my 11th birthday. So, Emma 1, Jealousy 0.5.

*Yet to click on that one as I assume it’s click bait.

**They will outlive me.

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?