The Freestyle Libre affect

[slip]

I was just reading a post about an unexpected high at night for a young lad and the mother explaining a lack of help for his HCPs - if it wasn't for the Libre the mother wouldn't have picked up on this unexplained rise - and theres been a good few posts since the introduction of the Libre of 'blood' anomalies it's shown, I also know when it first came out some people were reporting some HCPs were on it like a rash, others dismissed it out of hand. There are lots of T1 and some T2s out there using it now - and no doubt some of those have gone back to their clinic reporting allsorts of weird and wonderful graphs and the hard evidence of the finer points of T1 life - Are we over loading the HCPs with too much detailed info now?

Your thoughts and/or stories...........?

 

[Scott-C]

It's a good question, slip. It would be interesting to have a provider's take on it.

I don't think an AGP graph overloads with information. On the contrary, it provides in a single picture what an a1c provides but with much more detail at a glance about how the a1c is arrived at. It's a summary on steroids. Yet, it's still relatively new, so will take time to settle in

I've found the AGP and dailies I get from libre incredibly useful, much more so than strips and hba1c. So, I took printouts to the two meetings I've had since getting libre'd nine months ago.

One was with my GP, routine yearly checkup, she was interested but it was apparent that she didn't really know much about how to read them, especially not the AGP.

The other was a routine check up at the hospital diabetes clinic. Usually, those are 10 minute jobs, "how are you doing, any bad hypos, your a1's ok", that sort of thing. This one though, was different. The doctor was relatively newly qualified and wanting to specialise in diabetes. The meeting lasted a full thirty minutes, three times longer than usual, and a substantial part of that was us pouring over the AGP and then drilling down to a few of the dailies to figure out what, when and why bits and pieces were happening. She seemed genuinely interested in it.

But, the rub is, in both those instances, there was always other people in the waiting room after me waiting to be seen. Did she get a row from the boss for spending thirty minutes going over an AGP etc. when the usual is a quick look at a1c, and then next please?

AGP graphs have been around for a while now (haven't dexcom/medtronic been using them for a while?), but I get the sense that libre has kind of extended the number of users so that people are more likely now to be turning up at consultations waving this sort of stuff around.

I reckon that front-line staff do know already about how to read graphs, but as it's still a relatively new thing, the high heid yins are probably telling them, we use a1c, AGP needs to be proved, so carry on as you are. That will change.

 

[GrantGam]

I was just reading a post about an unexpected high at night for a young lad and the mother explaining a lack of help for his HCPs - if it wasn't for the Libre the mother wouldn't have picked up on this unexplained rise - and theres been a good few posts since the introduction of the Libre of 'blood' anomalies it's shown, I also know when it first came out some people were reporting some HCPs were on it like a rash, others dismissed it out of hand. There are lots of T1 and some T2s out there using it now - and no doubt some of those have gone back to their clinic reporting allsorts of weird and wonderful graphs and the hard evidence of the finer points of T1 life - Are we over loading the HCPs with too much detailed info now?

Your thoughts and/or stories...........?

I think if anything the reports that the Libre can generate will make the addressing/recognition of anomalies all the more easier for the HCP's. And I'm sure it's a breath of fresh air for the vast majority who have to interpret the BG logs of a diabetic as their day job.

But like a lot of things, the Libre is still only as good as the depth of info applied to it by the user. And by this I mean adding as much detailed info as possible alongside the generated reports. I believe that it's very important for the diabetic in question to still keep accurate food logs, exercise logs and general lifestyle parameters (stress, illness, less activity, more activity, etc) because personally - all the aforementioned can cause fairly hefty fluctuation on my BG. It's a pretty cool feature on the Libre to personalise the 'add notes' option for tagging to your measured BG. For instance you could add things like: stress, long distance run, high fat meal, correction dose, anaerobic gym session, the list goes on...

In short, I suppose what I'm getting at is that providing the Libre graphics/measured readings can be backed up by as much external influences that we're aware of - then it's a system that almost all Diabetolgists will welcome with open arms.

This is a very interesting thread @slip and I do hope we see more input to it in due course

 

[tim2000s]

An interesting topic @slip, and one I wrote about earlier this year - I think it's very pertinent. My take on more accessible information is not one of overloading HCPs in relation to Diabetes. At first, they didn't know what to do with it as most had never seen the data displays we were providing them as it wasn't part of the training. Diabetes clinics have had to do something about that pretty sharpish as more people have come on board. That was the first step.

The second is the empowerment that less expensive monitoring devices provide. One thing that every consultant I know says is that they wish that people found it easier to take responsibility for their own diabetes. The Libre has done that. There are many thousands of people engaging with and looking at things that they'd never even thought about before the Libre. It's been fascinating watching the NHS react. Those who want people to embrace their Diabetes have jumped at the opportunity to help with this, and are happy to have people turn up with beautiful graphs. Those who are less pleased about their "patients" gaining much more "expertise" have been rather slower to act.

What I've increasingly found is that HCPs are learning nearly as much from the broader uptake of these devices. They are learning that DP is far more common than they previously thought. That if you eat plenty of carbs, you have very little choice but to pre-bolus at least 20 minute beforehand (I've seen advice change as a result of this) and that people eating fewer carbs have much less peaky traces than most who eat higher carbs.

So I think we do a disservice by saying we are providing too much information. The additional information is being added to the bank of knowledge and allows the HCP to much better understand what they are seeing with someone and thus what advice to give. If they choose to dig more deeply, then that's not unreasonable, but I don't think it's due to overload.

As it happens, AGPs were first provided in NightScout, and then (as far as I am aware) it was Abbott who were the first to produce them in a commercial software package.

 

[slip]

@tim2000s Thanks for your, as usual, insightful and well crafted reply! I have my usual yearly check up at the clinic, so I don't get to see the overall affect the Libre is having on the NHS, it would be interesting to know if the uptake of pumps have 'sky rocketed' due to more people finding out they have DP because of the Libre. Question is, is DP aided and abetted and a response to what we eat ? There are certain foods I know which will show a the classic DP graph for me personally, so I can usually prepare to tackle that when I do eat those foods, are we as a collective a result of our own doing?

 

[tim2000s]

Question is, is DP aided and abetted and a response to what we eat ?

It can certainly be made worse by food choice. I personally found that a meal with more protein or carbs before bed made DP worse than one without, and that when I was running on lipids, I essentially had no DP...

 

[steve_p6]

I can produce a DP graph on demand. 4 bits of KFC chicken and half a bottle of red wine at about 9PM is great until about 3-4 am and then the BGs kick in and take me high over the next 3 hours. Get same profile with a big steak too!

 

[steve_p6]

I think if anything the reports that the Libre can generate will make the addressing/recognition of anomalies all the more easier for the HCP's. And I'm sure it's a breath of fresh air for the vast majority who have to interpret the BG logs of a diabetic as their day job.
This is a very interesting thread @slip and I do hope we see more input to it in due course

Completely agree Grantgam, the AGP along with the avg BG and time in range are basically just reporting on outcomes and results. If you want the HCP to help treat an issue then you have to go in with the daily graphs, detailing all of those factors that we know mess with our BG day to day, and clear show the issues.

tim has written along these lines in the past about Libre empowerment changing the relationship between patient and HCP and putting the onus onto the patient to more clearly evidence the problems hidden in the data.

 

[GrantGam]

@tim2000s Thanks for your, as usual, insightful and well crafted reply! I have my usual yearly check up at the clinic, so I don't get to see the overall affect the Libre is having on the NHS, it would be interesting to know if the uptake of pumps have 'sky rocketed' due to more people finding out they have DP because of the Libre. Question is, is DP aided and abetted and a response to what we eat ? There are certain foods I know which will show a the classic DP graph for me personally, so I can usually prepare to tackle that when I do eat those foods, are we as a collective a result of our own doing?

I agree with the others, certain foods make my DP seem worse. I use the word 'seem' because IMO the two aren't related. As already mentioned, protein and carbs cause my BG to climb higher and sharper in the early hours. As does an increased fat intake.

My best trends (almost flat overnight and with no evident DP) are almost always when I eat nothing past 6pm.

 

[Smokeycockatiel]

I wish the nhs would agree to this.

 

[New2T1D]

I am new to diabetes. What do these abbreviations mean: HCP, DP? My recently diagnosed T1D son uses Libre and we love it. But what are we missing by not monitoring? Thanks.

 

[Snapsy]

Hi @New2T1D - HCP is healthcare professional and DP is dawn phenomenon.

 

[New2T1D]

Hi @New2T1D - HCP is healthcare professional and DP is dawn phenomenon.

Ah thanks - sorry for being dim. All new to me. A subject I wish I never had to learn about though :-(

 

[Snapsy]

Not dim at all, @New2T1D ! It's baffling and bewildering in equal measure!

I didn't know Dawn Phenomenon was even a thing with its own name until I found this forum - which was 2 years ago - and 29 years after I was diagnosed...... For me it had always been called 'oh fiddlesticks*, that's a high start to yet another day'.

Love Snapsy


*actually a different word better left to your imagination!

 

[TheBigNewt]

Not dim at all, @New2T1D ! It's baffling and bewildering in equal measure!

I didn't know Dawn Phenomenon was even a thing with its own name until I found this forum - which was 2 years ago - and 29 years after I was diagnosed...... For me it had always been called 'oh fiddlesticks*, that's a high start to yet another day'.

Love Snapsy


*actually a different word better left to your imagination!

The "DP" is pretty vague IMO, and not very well founded in physiology as a separate "phenomenon". Yeah, I've seen people refer to "liver dumping" and stuff. But in the end it's a higher than desired fasting AM blood sugar. And there usually a reason for it. To be honest I sort of missed the whole topic until getting on this forum recently.

 

[Snapsy]

Now I've got my pump it's no longer an issue. I love that I can have a variable basal rate which certainly helps.

 

[slip]

I didn't know Dawn Phenomenon was even a thing with its own name until I found this forum - which was 2 years ago - and 29 years after I was diagnosed...... For me it had always been called 'oh fiddlesticks*, that's a high start to yet another day'.

And this is why I was wondering what impact the Libre has had on the NHS, it's only recently with the more widespread uptake of CGM type devices that DP has become a real 'thing', yes back in the day if you always had high fasting readings in the morning and tried different basals under the supervision of a DSN a good consultant would get you a cgm for a bit and then after jumping through hoops you might get put forward for a pump. Now Joe Bloggs turns up with his AGP graph and says he needs to be on a pump..........................fiddlesticks! (haven't heard or seen that written for quite some time Snapsy!)

Just a thought.

 

[New2T1D]

Not dim at all, @New2T1D ! It's baffling and bewildering in equal measure!

I didn't know Dawn Phenomenon was even a thing with its own name until I found this forum - which was 2 years ago - and 29 years after I was diagnosed...... For me it had always been called 'oh fiddlesticks*, that's a high start to yet another day'.

Love Snapsy


*actually a different word better left to your imagination!

Haha. I use a lot of new terminology myself and fiddlesticks* or similar is a common one Diabetes seems to keep me on my toes: what works one day or for while seems to not work and then be fine again. To have a bedtime snack or not to have a bedtime snack..... My son seems to sometimes soar when he's asleep and then sometimes not at all. Appears to be lowest on waking at 6:30am and then increases during the hour between waking and having breakfast at 7:30am, with no food eaten - is this the DP effect? Some days are quite a flattish line and others are like a zig zagging roller coaster. (Libre.) I guess he's honeymooning, but maybe own insulin production has good and bad days. GCSEs don't help - the stress. Just waiting for the papers to be handed out, the blood sugar line on the graph seems to go up in almost a vertical straight line - and stay high for a few hours. Looking forward to these being over. New diagnosis, teenage hormones and cortisol - a fairly toxic soup!

 

[Snapsy]

Appears to be lowest on waking at 6:30am and then increases during the hour between waking and having breakfast at 7:30am, with no food eaten - is this the DP effect?

Pretty much! #fiddlesticks

 

[Scott-C]

Appears to be lowest on waking at 6:30am and then increases during the hour between waking and having breakfast at 7:30am, with no food eaten - is this the DP effect?

It's a variation on the theme, called "foot on floor".

I'm lucky enough to not get true dp, those crazy unexplained 3am to 7am rises, but I can guarantee like clockwork that on most work days, as soon as I get up and just move around a bit, then over a period of 30 mins to 60 mins, I'll go up by 3 or 5 or more.

I knew that already to an extent from bg testing, but libre has let me watch it more carefully, and let me fine tune it a lot so that I'll get a sense of whether fof is kicking in, and, if so, how hard, and then I can generally pin it with, for me, 2 units or so.

Just makes things a lot tidier for when I come up for lunch - that 3 to 5 unpinned rise would easily take me well out of range, but pinning it keeps me in range coming up for lunch so I'm not having to do corrections at lunch - I've already corrected before it's happened by not letting the fof get too mad by doing the 2u by predicting from past experience and libre corroboration that fof is likely to happen, so have stopped it.

That's just how it works for me, not at all suggesting the same will be the case for your kid, but just something to think about.

The basis of fof is probably just that it makes sense from our genes from caveman days for our bodies to have more sugar kicking around as soon as we get up, but in a modern T1 context when we're not fighting sabre tooth tigers that often, maybe not so much. Still might be useful getting a place on the tram or tube, though...