Readings

[EmmaL76]

Ahh Barbara … that lovely message made me a bit emotional. I do try and talk to folks at home and sometimes I get upset because they initially found it quite amusing (that’s probably a bit strong a word) because I exercised so much and always watched me weight. They were poking fun, but it’s not fun ! Also I bake… a lot! And I’m known in my family for my cakes, I obviously don’t eat them. So that’s another bit of amusement, the diabetic cake maker, although I’m yet to make a decent cake with almond flour. Nobody I know has diabetes (apart from an uncle I never see) and people just think I can’t have sugar and that’s it but it’s so much more. I will try to speak to my team about my results, to be honest last time I spoke to my endo face to face he said I couldnt have the libre as I was too anxious. He didn’t want me to be constantly checking as I’ve been in and out of hospital for a while (not related to diabetes) and this lead to really bad health anxiety then the type 2 then type 1. Then I had an operation which failed and that got me really low. I have spent a long time convincing my team that I got this and I’m okay so they would give me the libre. I don’t have anxiety checking my bloods I actually love to be able to control it as otherwise I feel helpless. I need to relax my numbers are good. I’m feeling ok. Thanks Barbara. Your a proper lovely lady

 

[Bruce Stephens]

Glad you the libre on prescription. I have too
but we are a rare breed as lot don’t and that’s sad.

Not that rare (for people with T1, that is). Last time I saw a figure it was that 37% of people with T1 were being prescribed Libre. (Should be higher, I think, and it should include many with T2 as well (especially, but not exclusively, those who use insulin).)

 

[EmmaL76]

Not that rare (for people with T1, that is). Last time I saw a figure it was that 37% of people with T1 were being prescribed Libre. (Should be higher, I think, and it should include many with T2 as well (especially, but not exclusively, those who use insulin).)

Well i mistakenly thought all type 1s were eligible was quite shocked when I found out that wasn’t the case. I think it’s a necessity for all type 1’s but also think that it should be rolled out to type 2’s. As I’ve been treated as both at times there is a noticeable difference between the attitude towards the 1’s and 2’s. They are different diseases with different pathology’s I realise that but we all have the same end goal to look after our sugars to stay healthier in the future. Probably not feasible but in an ideal world that’s what I would like to see

 

[Bruce Stephens]

Well i mistakenly thought all type 1s were eligible was quite shocked when I found out that wasn’t the case.

You're right that it should be, and I imagine will be before too long. But it hasn't been around for that long. And it took a little while before home blood test strips were routinely prescribed and it's hard now to imagine how we coped before that.

People with T2 aren't routinely offered test strips, so I imagine the chances of routinely offering Libre is way off. I think there's a non-trivial chance that everybody on intensive insulin therapy (so almost everyone with T1 and quite a few with T2) might be offered access to technology (pumps, CGM, etc.) on equal terms.

 

[leonS]

Well that certainly told me😳 just seems to be the main focus of everything. However you did say those with limited brain power find it useful and… ta da … that’s me

My comments were aimed at medics and not at you, sorry that they landed so wide of the mark. I can understand why a Dr. would use the Hb test where nothing better is availabe. But medics are guillty, if of nothing else, of giving the impression that the Hb test is some kind of gold standard when it is just a rough indication of average BG.

I think that you sell yourself short. I am sure that you are well able to understand more than one figure at a time. Just start with average glucose level, this is what the Hb test tells you in any case. BUT the Libre does it much better. Then check the time in target. A good indication of control that the the Hb test give no indication of what so ever.

I am not interested in the result of any test only in so far as the result can be used to improve my control.

 

[EmmaL76]

My comments were aimed at medics and not at you, sorry that they landed so wide of the mark. I can understand why a Dr. would use the Hb test where nothing better is availabe. But medics are guillty, if of nothing else, of giving the impression that the Hb test is some kind of gold standard when it is just a rough indication of average BG.

I think that you sell yourself short. I am sure that you are well able to understand more than one figure at a time. Just start with average glucose level, this is what the Hb test tells you in any case. BUT the Libre does it much better. Then check the time in target. A good indication of control that the the Hb test give no indication of what so ever.

I am not interested in the result of any test only in so far as the result can be used to improve my control.

No apologies necessary, I didn’t take offence. I understand totally what you are saying. At the end of the day WE are the experts on our own control and how our bodies are working or not working. Looking at the big picture i suppose is way more beneficial than a single number. It’s just a good HB feels a bit like a reward for all the hard work, and I like rewards especially as I don’t get paid for this new full time occupation I’ve landed myself 🙄

 

[everydayupsanddowns]

So then I thought we’ll ok hba1c will prove I’m doing good but now folks are saying that isn’t important. Sometimes I feel like I’m losing my mind and don’t know what I am or what I’m supposed to do.

Ugh! Yes it‘s a frustrating business.

One of the enduring benefits of HbA1c is the huge amount of evidence that has been amassed and analysed over the years regarding blood glucose management (measured by HbA1c) and the likelihood of developing long term complications, from the landmark DCCT trial(s) and later studies.

We simply don’t have the equivalent breadth of data for ‘Time in Range’, so we can’t really demonstrate for certain how it benefits PWD long term. That’s not to say it isn’t a powerful and useful - indeed in many ways more actionable - piece of information than HbA1c. Plus it is well known that the same HbA1c can be the product of very different glucose profiles.

But in research/results terms TIR doesn’t have the longevity… yet!

Additionally the vast majority of clinical trials into diabetes collect baseline and outcome HbA1c data, which is easy to do - even remotely via a home kit.

Time in range is nothing like so easy to collect, or currently so widely available.

So I wouldn’t underplay the value of the humble A1c. It’s not going anywhere any time soon 🙂

 

[EmmaL76]

Okay, so I read that a few times, very slowly, and I think I get ya. So what your telling me is that HB is good because it’s all we got that’s any good at the moment but there will probably better ways in the future to tell how well (or not so well) we are doing . Speaking of time in range .. 94% for me today best day of the week! and I’ve been baking all day, dunno how it all tastes but it smells nice 🙄

 

[everydayupsanddowns]

Okay, so I read that a few times, very slowly, and I think I get ya. So what your telling me is that HB is good because it’s all we got that’s any good at the moment but there will probably better ways in the future to tell how well (or not so well) we are doing .

Ha! Possibly because of all the slpelnig msiktaes I kindly included to confuse you 😛

I’ve corrected those and tried to make it a bit clearer 🙂

Yeah, basically spot-on.

We’ve got lots of A1c data from mahoosive trials over the years that we can use. We know it’s a slightly flawed measure, but historically it has been really important in developing understanding of long term risks.

TIR is the new kid on the block. Quite probably better, but still early days 🙂

 

[Proud to be erratic]

I've come to this discussion a month late - but that's fine. Thank you to @EmmaL76 for starting this discussion under a fairly generic title of Readings and thank you to @everydayupsanddowns for expanding and clarifying why "we are where we are". I feel very reassured from the discussion that has emerged; I've been mildly bothered over recent weeks about the apparent disconnect between the overall utility of the different means that are being used to measure and then to give an overall performance report - from which decisions are made remotely. I couldn't explain to myself what was bothering me, never mind frame a pertinent question to anyone else. So, again, thanks.

I have my Libre 2 linked to the Diabox app (android) and I am a massive proclaimer to anyone who'll listen about how good it is to have CGM, constantly on display. Yesterday I found myself in a scheduled outpatient clinic having a troublesome carcinoma removed; at the start I'd lightheartedly teased the surgeon that her task was not only to do the surgery well but also to not stress me: I'd know straightaway, if my BG spiked. Everything went well; my sugars dropped a bit (pretty normal for my erratic world), the alarm sounded at my setting of 6.0, 2 jelly babies and 2 or 3 mins later normality was restored; and the surgeon continued her work. This just couldn't have been managed that simply, without the current technology, regardless of how precise the numbers are (or might be). The trend indication along with the severity of the drop (which diabox displays from 0.1 to 1.0 mmOl/L/min) was absolutely key. No need to finger prick, with that consequent interruption to the procedure; just a balanced precautionary response.

At the end I thanked the surgeon for keeping me "steady". Her response slightly shook me. She felt I was a model patient (yes, really ...! ) and many of her patients with DM (surprisingly to me), just don't bother to control or manage their DM in the way that I had. I did nothing more than what was primarily in my own self-interest; making use of technology to head off a low glucose event and potential hypo.

At the very least there might be merit in improving the awareness to longer standing insulin dependent diabetics about how useful the new technology can be; I can't help feeling that the more the benefits are promoted the more everyone will gain. I don't know what the NHS pays for each Libre 2, but I'd be amazed if the counter cost was not discounted, significantly for the NHS. The gain to the NHS by helping patients to improve their control and thus reducing costs of outpatient procedures or hospitalisations, etc should be evident and no doubt can be quantified, albeit with some assumption for a business case. Reading different blogs, both here and on other sites, it sometimes seems there is an ingrained resistance by both patients and medical practicioners leading to a sense of its not possible.... too expensive, too difficult, too complicated, too (I don't know what) ..... I don't have a solution for how this improved awareness can be achieved, other than by the NHS actively reaching out, through clinics, GP surgeries and even advertising material?

I have, elsewhere, likened BG awareness to having a car with a fuel guage. No driver today would willingly set out on a journey in a car without a working fuel guage; the DVLA mandate that "when fitted" the guage must work and enforce that with the MOT test. Yet we have to "dip the tank" (finger prick) with the attendant intrusion and inconvenience. I know it will take time for sensors to become ever more accurate and reliable; and I know that currently finger pricking is needed to verify a sensor reading when it seems "off". But the more that sensors are used the more that remit will diminish. I do still fingervprick sometimes, but perhaps 10x weekly, not 10x daily - my norm before Libre 2.

Rant over.

 

[everydayupsanddowns]

Glad you found the discussion helpful @Proud to be erratic

And yes, the NHS negotiated a healthy discount for their Libre purchases
🙂