Newbie to the forum but an old lag otherwise...

[Marticelli]

I've been T1 since 1975 and have seen a world of change in my time sticking needles daily or more... In the Noughties I was the unwitting recipient of 'parallel imported' Novorapid which had been brought by refridgerated road transport from Czech Republic, Poland and Hungary by licensed importers (eg 'Drugs'R'Us'!!!!) under an MHRA scheme allowed under the then EU 'freedom of goods' principle of the EU, which blossomed once the EU was greatly expanded (12 countries became 27) by the accessions of 2004, opening up cheap sources of insulin from countries whose standard of living was way lower than the UK hence the cheaper supply availability... Use of this almost-out-of-date stuff of uncertain quality has wrecked my health as after decades of basically good control, I started having unexplained high BGs (leading to major infections, osteomyelitis, threatened amputations etc etc) which were all apparently the result of using 'dud' imported insulin to control my BG without the benefit of CGM or similar to spot the problem. Insistence on genuine Novo insulin supplies from Denmark (Thanks Boots!!) as part of my daily routine caused an instant return of good control, and my general health has returned to near my former levels but the resultant neuropathy has led to irreversible muscle loss and mobility issues which are now affecting my enjoyment of life generally. I complained to MHRA, BBC Watchdog, Panorama and anyone else I thought might care but got zero interest from them all.

Started using an original Abbott Libre (L1) four years ago thanks to the enlightened Scottish NHS agreeing to T1 Diabetics being provided with them free - considered unaffordable on a pension. News of the L1 being discontinued at the end of 2022 and replaced with Libre 2 filled me with dismay as I couldn't believe that economics wasn't the principle driver for the change. Early experience of L2 confirms my worst frears as it is clearly a greatly reduced quality device. I've experienced 50% sensor start-up failure rate so far which is frankly a disaster. Reader (L2 compared with L1) battery life has plummeted from months between charges to a few days (MUST be a cheaper battery fitted to the L2 reader). Losing confidence in the whole system as a result. Although the alarm function is supposed to be a benefit, the reality with the alarms is they aren't fit for purpose and I've stopped trying to use them for several reasons. Firstly they are almost inaudible and only sound once. Secondly I don't want the alarm to trigger when my BG is leaving my chosen range but at higher and lower levels, but the L2 reader doesn't allow a separate alarm and range to be set, the only way to achieve the higher and lower triggers is to set a ridiculously wide range so my "% time in range" figure is now rendered meaningless.

The final straw was having my latest sensor fail to start-up last night when I had no spare to replace it with, which forced me late last night back to finger-pricking and blood tests which was an awful reminder of how we all used to operate. Now waiting to fit my replacement L2 later today but am changing (at my Consultant's suggestion) to try the Dexcom One system to see if it performs better. As a retired scientist and engineer, I am basically an optimist but remain to be convinced after my recent Abbott experiences. I hope Dexcom perfoms better...

 

[everydayupsanddowns]

Welcome to the forum @Marticelli

We’ve a few long-term T1s on the forum with whom you can exchange stories about test tube and needles in surgical spirit! 😱 I’m a relative newbie, with a mere 30 years under my belt. Sorry to hear about some of the difficult experiences you have had over the years.

Interesting what you say about insulin. As far as I am aware the UK imports all of its insulin from continental europe. I don’t think any human/analogue insulin is made here? Or ever was?

Sorry you’ve had a disappointing experience with Libre 2. the added alarms and bluetooth function (transmission) may partly explain the battery life differences you’ve noticed.

Hope you find the Dexcom One works better for you. Let us know how you get on with it.

 

[Tdm]

I've just been trying dexcom g6 (self fundex) alongside my libre 2, which has started waking me up with false lows ( up to 5 times a night)
G6 is a lot less 'hystrionic' (false low /high swins) and you can set the alarms to repeat, and you have a wider variety of alarms. Whilst libre has its advantages, now i would like to go over to dexcom if my clinic will fund it.
Also, libre needs me to scan and tjat often takes a couple of goes before it works. Plus dexcom doesn't seem to jabe so many errors.
The libre app is better, though

 

[Bruce Stephens]

The libre app is better, though

As I understand it while the Libre app is more all in one, but with Dexcom the expectation is that you use the separate Clarity app for some features. I thought overall they offered rather similar features, though I can believe one might be more convenient to use than the other.

 

[Tdm]

As I understand it while the Libre app is more all in one, but with Dexcom the expectation is that you use the separate Clarity app for some features. I thought overall they offered rather similar features, though I can believe one might be more convenient to use than the other.

Yes but you can get to clarity via the standard dexcom app...dexcom has more reports, but you have to 'generated them' which takes like 5 seconds. Your stats are more indepth, but less accessible, on dexcom compared to libre...which may, if you get a bit too into your numbers, actually be a good thing.
Dexcom app gives you your current glucose without having to log into phone so good for sleepy middle of the night peeks

 

[Bruce Stephens]

Yes but you can get to clarity via the standard dexcom app...dexcom has more reports, but you have to 'generated them' which takes like 5 seconds. Your stats are more indepth, but less accessible, on dexcom compared to libre...which may, if you get a bit too into your numbers, actually be a good thing.

Ah, OK. Yes, LibreLink does give nice quick access to things like TIR for the last 24 hours. It sounds like using Clarity is a bit like using LibreView, which has lots of useful information but (even once you've logged in) takes a few seconds to actually show anything.

 

[Tdm]

Ah, OK. Yes, LibreLink does give nice quick access to things like TIR for the last 24 hours. It sounds like using Clarity is a bit like using LibreView, which has lots of useful information but (even once you've logged in) takes a few seconds to actually show anything.

At first i prefered libre as i was used to it, but now pretty much do all my checks on dexcom...i have both sensons on at mo as only got dexcom after had applied libre...when the libre runs out will just do dexom for a bit- only have a months supply but its heaven to get a month of uninterupted sleep!

 

[everydayupsanddowns]

Ah, OK. Yes, LibreLink does give nice quick access to things like TIR for the last 24 hours. It sounds like using Clarity is a bit like using LibreView, which has lots of useful information but (even once you've logged in) takes a few seconds to actually show anything.

Clarity does give you handy TIR overviews for 2, 7, 14, 30 and 90 days via ‘summary’ and ‘goals’, but it doesn’t have those AGP graphs, and hypo counts that Libre does unless you generate reports.

Summary (90 day)


Goals (7 day)

 

[Marticelli]

Interesting what you say about insulin. As far as I am aware the UK imports all of its insulin from continental europe. I don’t think any human/analogue insulin is made here? Or ever was?

On the question of manufacture and supply, Novo manufactures in Denmark for most of the world, and it's shipped direct to each country with appropriate labelling on the penfill glass phials, which was why after five years of using this reimported stuff I finally figured it wasn't intended for the UK market but Hungary, Poland or the Czech Republic.

When I sent carefully preserved samples of Hungarian and Polish market penfills together with a new UK market sample as a control to Novo for testing their quality, months later they eventually sent me back a meaningless results table with four test results on the three different samples. Each of the twelve results boxes had no data about titration or performance but merely the words 'within specification' printed twelve times!! When I asked what specification they were supposedly within, I was politely told this was 'commercial in confidence' information which as a retired scentist is a deeply troubling response to a reasonable question.

Without knowing the titration of the insulin, T1 diabetics have no chance to make correct decisions about dosing each time they inject. It's clear there remains a concern about degradation of biosensitive pharma products like insulin if not stored and transported correctly which is big drawback with the EU parallel imports idea. MHRA as well as Novo Nordisk are in denial there could be anything wrong with shipping or trucking it around the EU willynilly. There has also been a big investigation in America by the US equivalent of DiabetesUK where 50 samples bought randomly across the States were almost all shown to have lost potency, sometime to an alarming extent. This is another reason why the CGM methodology is so good because you can see the exact result of each tiny injection. I use a Novopen Echo children's pen as it can deliver half units so I can accurately inject tiny doses like a pump. It also has a recording of the size and time of the last injection which is a godsend for forgetful old geezers like me who can't remember when (or even if!) I gave my last injection.

 

[Marticelli]

I've been T1 since 1975 and have seen a world of change in my time sticking needles daily or more... In the Noughties I was the unwitting recipient of 'parallel imported' Novorapid which had been brought by refridgerated road transport from Czech Republic, Poland and Hungary by licensed importers (eg 'Drugs'R'Us'!!!!) under an MHRA scheme allowed under the then EU 'freedom of goods' principle of the EU, which blossomed once the EU was greatly expanded (12 countries became 27) by the accessions of 2004, opening up cheap sources of insulin from countries whose standard of living was way lower than the UK hence the cheaper supply availability... Use of this almost-out-of-date stuff of uncertain quality has wrecked my health as after decades of basically good control, I started having unexplained high BGs (leading to major infections, osteomyelitis, threatened amputations etc etc) which were all apparently the result of using 'dud' imported insulin to control my BG without the benefit of CGM or similar to spot the problem. Insistence on genuine Novo insulin supplies from Denmark (Thanks Boots!!) as part of my daily routine caused an instant return of good control, and my general health has returned to near my former levels but the resultant neuropathy has led to irreversible muscle loss and mobility issues which are now affecting my enjoyment of life generally. I complained to MHRA, BBC Watchdog, Panorama and anyone else I thought might care but got zero interest from them all.

Started using an original Abbott Libre (L1) four years ago thanks to the enlightened Scottish NHS agreeing to T1 Diabetics being provided with them free - considered unaffordable on a pension. News of the L1 being discontinued at the end of 2022 and replaced with Libre 2 filled me with dismay as I couldn't believe that economics wasn't the principle driver for the change. Early experience of L2 confirms my worst frears as it is clearly a greatly reduced quality device. I've experienced 50% sensor start-up failure rate so far which is frankly a disaster. Reader (L2 compared with L1) battery life has plummeted from months between charges to a few days (MUST be a cheaper battery fitted to the L2 reader). Losing confidence in the whole system as a result. Although the alarm function is supposed to be a benefit, the reality with the alarms is they aren't fit for purpose and I've stopped trying to use them for several reasons. Firstly they are almost inaudible and only sound once. Secondly I don't want the alarm to trigger when my BG is leaving my chosen range but at higher and lower levels, but the L2 reader doesn't allow a separate alarm and range to be set, the only way to achieve the higher and lower triggers is to set a ridiculously wide range so my "% time in range" figure is now rendered meaningless.

The final straw was having my latest sensor fail to start-up last night when I had no spare to replace it with, which forced me late last night back to finger-pricking and blood tests which was an awful reminder of how we all used to operate. Now waiting to fit my replacement L2 later today but am changing (at my Consultant's suggestion) to try the Dexcom One system to see if it performs better. As a retired scientist and engineer, I am basically an optimist but remain to be convinced after my recent Abbott experiences. I hope Dexcom perfoms better...

Just had my third Libre 2 fail to start, which is a jaw dropping 50% failure rate. This is absolutely terrible for me personally and what it does for Abbott's share price remains to be seen. Others also seem to be having this kind of unreliability. Got the Dexcom One kit now but it doesn't look easy to use and only gives ten days of data per sensor. Haven't plucked up the courage to try it yet, and I guess I'm hoping this Abbott problem is a glitch.