Hello! T1 new to the forum but not to diabetes

[RIPPolaris]

Hello everyone.
I was diagnosed with T1 in 2012.

I suppose I've been managing OK since then (you would hope so!) but I mainly put that down to education and trying to understand what's going on, food & GI/GL, carb couting etc etc. Nothing much has changed for me since those early years of my diagnosis.

Fast forward to today after years of radio silence from diabetes services (other than yearly eye screening/bloods etc) I get a call out of the blue and have been put on a Libre 2+ trial.
I'm coming to the end of my first sensor and am still getting used to the changes associated with this.
It's been quite good when it works!

Anyway, I can here searching around for more info from people with experience in CGMs, tips, tricks, things to know etc.

Pleased to meet you all!

 

[rebrascora]

Hi and welcome.

Really shocking that you have only just been offered a CGM and it certainly should not just be a trial offer but a regular repeat prescription.... unless you don't want it of course.

The important thing with CGMs is to understand their limitations. They are a game changing bit of kit but only when you know when they are reliable and when they are less so and you need to revert to finger pricks. After some considerable discussion between ourselves on the forum about our various experiences, @helli composed a pretty comprehensive list of these limitations and quirks which might prove helpful to you so I will link to it below

H

Thread 'CGM limitations and precautions'

Sep 8, 2023

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.

If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...

• helli
• Replies: 23
• Forum: Pumping and Technology

• 
• 
• 

Sensor error try again in 10 mins are usually when your levels are changing fast and the sensor doesn't trust the data enough to give you a reading. Some phones have better Blue tooth connectiuvity than others so some seem to have problems with losing the signal and dropping out. Personally I use a dedicated Freestyle Libre reader as I find this much more reliable than the phone app and not affected by the various operating system updates which some people experience. The down side to using a reader is that you have to scan to get readings rather than the readings being blue toothed to the phone and I have to carry another device, but the reader is small and simple to use and I am not joined at the hip with my phone whereas my reader easily fits in a pocket or pouch and is unaffected by phone updates..... and the battery on mine lasts nearly a week between charges. I love it's size and simplicity and ease of use.

Anyway, let us know what issues you have with your Libre and we will see if we can assist or fill in the gaps as to why it is happening.

 

[Robin]

Hello everyone.
I was diagnosed with T1 in 2012.

I suppose I've been managing OK since then (you would hope so!) but I mainly put that down to education and trying to understand what's going on, food & GI/GL, carb couting etc etc. Nothing much has changed for me since those early years of my diagnosis.

Fast forward to today after years of radio silence from diabetes services (other than yearly eye screening/bloods etc) I get a call out of the blue and have been put on a Libre 2+ trial.
I'm coming to the end of my first sensor and am still getting used to the changes associated with this.
It's been quite good when it works!

Anyway, I can here searching around for more info from people with experience in CGMs, tips, tricks, things to know etc.

Pleased to meet you all!

Hello, and welcome to the forum.
There is a useful thread here, on CGMs in general, with their limitations etc, which may be a good starting point. I got my Libre a few years ago now, and have never looked back, they work well for me, and gave me insights on what was happening to my blood glucose, especially overnight. (high waking reading, I suddenly found out, didn’t mean I’d been climbing steadily all night, it meant I'd hit the 4s around 4am, and then climbed steadily from then on, so increasing my basal was the wrong thing to do)

H

Thread 'CGM limitations and precautions'

Sep 8, 2023

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.

If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...

• helli
• Replies: 23
• Forum: Pumping and Technology

• 
• 
• 

Oh, @rebrascora types faster than i do, and has already given you the link!

 

[helli]

Welcome @RIPPolaris
It's great news that your diabetes service has woken up and provided you with Libre.
Using a CGM has certainly helped me with my diabetes management but it is important to understand the limitations of the technology (that have been repeated twice above). Otherwise, ignorance leads to extreme frustrations.
If I was to summarise the longer thread, I would say "if the reading from your sensor is unexpected, test with a finger prick." I think Abbott say something like this now and admit Libre (and all other CGMs) do not completely replace finger pricks so don't forget to carry your meter with you. This is especially true when driving when it is a legal requirement.

Maybe I am lucky with my phone or maybe my BG doesn't change that fast but it is some time since I have got the "come back in 10 minutes" message that @rebrascora and, even when I got it, I found it far preferable to swiping with the reading - another thing to carry around with me.
It is just a another reminder how different we all are in terms of how we manage our diabetes, our bodies and our lifestyles.

The huge benefit of a CGM is being able to see what happens between finger pricks. The biggest impact it has had for me is changing my pre-bolus times to avoid the spike which I didn't know about. It has also made basal testing far easier.
I will warn against becoming obsessed with it - it can become very addictive.

 

[RIPPolaris]

Thanks everyone.

Some very useful info in the limitations thread, thanks for the link.

It confirms the kind of thing I'd been seeing in terms of delays i.e. It said I was going low, I'd finger prick, see I was low 4s with some bolus still on board, eat to correct an impending hypo and then it'd spend the next 45mins to an hour telling me I was hypo before it caught back up with what was going on in my blood, which I'd again confirmed was on the up and all was well with a finger prick.
I understand that interstitial fluid readings lag behind what's actually going on in blood glucose by some margin. It seems to be at least 30 mins in my limited experience so far.

I definitely didn't trust the libre initially and needed to get to know it and understand what it's telling me.
I have been checking finger pricks when in doubt at all. i.e. I know how much bolus is on board (if any), I know how I feel, I know how this activity would usually affect me, that doesn't sound right etc.

Only minor issue with that is the prescription reduction in test strips for my meter to 1 pack a month.
I completely understand that the Libre is expensive and IF everything works as it should then you shouldn't need to finger prick much at all.
But as we all know, things don't always go to plan with diabetes!
Ultimately the Libre does seem a useful tool and it's cheaper for me to self fund a couple of boxes of strips IF I need them than to pay for the Libre sensors.

The Libre is on a 3 month trial through the local NHS services. I got 1 sensor up front and after attending an online meeting with Abbot (basically just reading the manual) I was given a prescription for 5 sensors. Once they're done, if the NHS are happy with my readings they'll put the libre sensors on my repeat prescription.
This irked me somewhat as it was very much "if they are happy" rather than having any meeting with me about what I thought, how I was coping with the new kit, did I want to continue etc. I can take that up with the diabetes services nearer the time if things aren't working out.

Problems.... other than getting used to the aforementioned "lag time" of the readings, the sensor worked OK for about 9 days then started dropping connection and wouldn't even scan, giving me "Sensor error, try again in 10 minutes" errors.
Since then it's stopped working in this manner multiple times a day and blacked out for any where between 30 mins to several hours before working again.
I did report this to Abbot and they've sent out a new one.
I don't know if this is a duff sensor, looking at libreview the sensor blackouts occured when I was in range and the BGs weren't spiking or dropping dramatically.


Sorry for the wall of text but it's so nice to be able to speak to people who know where I'm coming from!
Thanks again!

I need to put a new sensor on as this one expires tomorrow. I might have to try applying it today (as recommended in that CGM thread) and activate it tomorrow.

 

[rebrascora]

It sounds like you are pretty switched on and have picked up a lot of the quirks already. The significant lag when levels are dropping and then you take a hypo treatment and levels come back up but Libre reports that you are still dropping is I believe actually due to the algorithm which tried to compensate for the lag between blood glucose and interstitial fluid glucose. It uses the previous trend to extrapolate in order to predict what your actual BG is. This is OK when levels are uniformly rising or falling but at key moments when they suddenly stop dropping and start going back up, the interstitial fluid extrapolation is still showing you dropping and it takes considerable longer for that change of direction to register and Libre to get back on track. Sometimes you will see Libre showing you dropping into red readings during these periods even though you treated at say 4.5 but later when you look at the graph it doesn't actually dip into the red at all and effectively realises that it got it wrong and redraws the graph once it has more data. This might leave a low or indeed high reading hanging below or above the graph and the graph line not going through that point.
Hopefully I have explained it well enough for that to make sense. Once you get the hang of these limitations and how they work you will most likely not feel it necessary to finger prick test so much and after 5 years of Libre use, there are some sensors that I only need to double check once or twice and very, very occasionally, not double check at all. Not that it doesn't give erroneous readings but just that I can spot that they are erroneous and have enough experience to trust my hypo treatment and know that I am recovering because I know that those 2 jelly babies or whatever that I have taken at 4.5 with a vertical downward arrow are enough to fix it even when Libre says I am now down to 2.9 and still dropping fast.
I think it is wrong that your test strips have been restricted, but there have certainly been times when I have self funded extra test strips and indeed many of us self funded Libre before we got it on prescription. I can certainly still order 3 boxes of test strips every month but I generally only need to order them twice a year for my current testing needs, but it has taken time to develop my current relationship with Libre and know when it is acting like a drama queen. Mostly it works really reliably for me and I know exactly how much of a correction I need for any individual reading it shows so I am happy to bolus and correct from it without finger pricking now.

I totally agree with your comment about your team making the decision about prescribing Libre (or other CGM) without consultation with you and this sounds like a very old fashioned approach. Medical professionals should be working with us not dictating to us. I know when I first got Libre on prescription I had to do the Libre Academy tutorial things and sign a "contract" with my HCPs that I would share data with them and scanning at least 8 times a day if I remember rightly but I was already self funding Libre at the time and scanning 30+ times a day and had learned everything I needed to know by sharing thoughts and ideas with the good people here on the forum, so I was already well placed to get the best out of the data it provided. I still average 30-35 scans a day just because that is how it seems to work out for me and I find all that background data really helps me to build a much more informed view of how my levels respond in all sorts of situations, which gives me increased confidence.

I also take occasional Libre breaks if/when I get chewed off with being at it's beck and call/alarm fatigue. This usually coincides with my diabetes being "difficult" and I find it quite refreshing to have a couple of days without it when a sensor comes to an end although the first night can be a bit anxious even though I don't rely on the alarms. After a couple of days, I go back to a new sensor with refreshed appreciation for how much easier the system makes my life..... Absence makes the heart grow fonder as they say! I agreed this with my consultant before I signed the contract and he gave me his full support and acknowledged that breaks from the technology can be helpful, so you should still have test strips available for if you wanted to do that, as well as to double check Libre when needed and obviously to carry when driving.

 

[Proud to be erratic]

Hi @RIPPolaris, welcome also from me to the Forum. I was really irritated, on your part, about the whole process you've been through to be offered any CGM. I ought to check if you are in England, since I'm not sure if Wales, Scotland or NI comply wholly with NICE Guidelines.

I have presumed it was your regional Hospital or somewhere within the regional Integrated Care Board (ICB) that originally reached out to you, with that offer. Most of us that get their CGMs on repeat scripts from their GP Surgeries only get one months worth (2x Libre2+) permonth; but Hospitals have a call-off contract that provides 3 months worth at a time and on auto repeat. Hence your single Libre rapidly followed by 5 more.

Whilst it was good that somehow they picked up that you, as a T1, didn't have CGM - but, as already said, this should not be some sort of conditional offer. The NICE Guidance Note NG17, updated in 2022, made it very clear that CGM should be normal for all T2s. Neither your Hospital or GP Surgery should be tying a T1 patient to such criteria. A link to NG17 is below:
https://www.nice.org.uk/guidance/ng17

Professor Partha Kar the National Specialty Advisor, Diabetes with NHS England and co-author of the national Diabetes GIRFT report, worked extremely hard to push NICE to update their Guidance and bring Diabetes management into the 21st century. If your provider of your Libre should give you difficulty in the future don't hesitate to reach out to him directly; he has a great reputation for robustly telling Health Care Providers (HCPs) what they are supposed to be doing in respect of D care and CGMs in particular. Search NHS England's website for his name.

Additionally you should not (arguably must not) have your prescribed supply of test strips throttled because you have CGM - for a variety of reasons. CGMs all have inherent risks of sometimes generating spurious results or just not producing results because of connectivity issues; the latter from software upgrades by CGM providers (ridiculous, but it happens), by phone manufacturers and operating system providers. Never mind the possibility that you lose or break your phone. If you drive the DVLA requires you to have a means of testing actual BG at all times; this is mandatory in connection with our restricted 3yr licences. You need the test strips that you need and if you need to "push back" and insist you have a sensible stock in reserve.

NG17 clearly lays out that a Care plan for anyone with T1 should be developed "with them" and includes guidance on BG testing arrangements. While it is a Guidance Note, it has some strong provisions that have to implemented, only budgetary issues can temporarily alter the implementation.

Apologies for my 'wall of text'. Even though you've successfully been managing your diagnosis for some 13 yrs, it is possible to lose sight of improvements in D care. They dribble in, almost invisibly and places like this Forum, or DUK's membership and their free Balance magazine, or Desang's on line monthly magazine reveal these changes in principles, regulations, medications or tech. Anyway welcome aboard.

 

[RIPPolaris]

Hi @RIPPolaris, welcome also from me to the Forum. I was really irritated, on your part, about the whole process you've been through to be offered any CGM. I ought to check if you are in England, since I'm not sure if Wales, Scotland or NI comply wholly with NICE Guidelines.

I have presumed it was your regional Hospital or somewhere within the regional Integrated Care Board (ICB) that originally reached out to you, with that offer. Most of us that get their CGMs on repeat scripts from their GP Surgeries only get one months worth (2x Libre2+) permonth; but Hospitals have a call-off contract that provides 3 months worth at a time and on auto repeat. Hence your single Libre rapidly followed by 5 more.

Whilst it was good that somehow they picked up that you, as a T1, didn't have CGM - but, as already said, this should not be some sort of conditional offer. The NICE Guidance Note NG17, updated in 2022, made it very clear that CGM should be normal for all T2s. Neither your Hospital or GP Surgery should be tying a T1 patient to such criteria. A link to NG17 is below:
https://www.nice.org.uk/guidance/ng17

Professor Partha Kar the National Specialty Advisor, Diabetes with NHS England and co-author of the national Diabetes GIRFT report, worked extremely hard to push NICE to update their Guidance and bring Diabetes management into the 21st century. If your provider of your Libre should give you difficulty in the future don't hesitate to reach out to him directly; he has a great reputation for robustly telling Health Care Providers (HCPs) what they are supposed to be doing in respect of D care and CGMs in particular. Search NHS England's website for his name.

Additionally you should not (arguably must not) have your prescribed supply of test strips throttled because you have CGM - for a variety of reasons. CGMs all have inherent risks of sometimes generating spurious results or just not producing results because of connectivity issues; the latter from software upgrades by CGM providers (ridiculous, but it happens), by phone manufacturers and operating system providers. Never mind the possibility that you lose or break your phone. If you drive the DVLA requires you to have a means of testing actual BG at all times; this is mandatory in connection with our restricted 3yr licences. You need the test strips that you need and if you need to "push back" and insist you have a sensible stock in reserve.

NG17 clearly lays out that a Care plan for anyone with T1 should be developed "with them" and includes guidance on BG testing arrangements. While it is a Guidance Note, it has some strong provisions that have to implemented, only budgetary issues can temporarily alter the implementation.

Apologies for my 'wall of text'. Even though you've successfully been managing your diagnosis for some 13 yrs, it is possible to lose sight of improvements in D care. They dribble in, almost invisibly and places like this Forum, or DUK's membership and their free Balance magazine, or Desang's on line monthly magazine reveal these changes in principles, regulations, medications or tech. Anyway welcome aboard.

Hi @Proud to be erratic , I am in the UK. South Yorkshire.

Thanks for the interesting read!

I've haven't pushed the current test strip reduction yet but am prepared to if needed and can see there's the ammo for it!

Enter the CGM I suppose!

I think it was picked up on after my last annual check up with a practice nurse.
I mentioned to them about CGMs (I did get a freebie one off Abbott for a trial Libre 2 sensor a couple of years ago) and they must've referred it.

I feel like I've probably dropped off the radar a little bit as it's been a long time since I saw an actual DSN or anyone outside of practice nurses or eye screening. When first diagnosed I met with the DSN fairly regularly until they were happy I'd got a handle on things, then used to have yearly meetings with an Endo at the hospital. These stopped happening years (5+) years ago. I'm not sure if they're supposed to have ongoing reviews with patients who have it mostly under control.

I've just been plodding along with no major issues (touch wood) and my HBA1Cs have been OK, last couple have been low 40s, like 44.

Appreciate everyone's replies.

 

[HayleyR]

Hi @RIPPolaris and welcome to the Forum 🙂. I've been using the Libre 2 sensor for probably a couple of years now and personally found it a game changer. Yes, I sometimes get 'sensor error try again in 10 mins' but then it's normally okay after that time. I particularly love the idea that you can subtly check your levels in public and get an indication whether it's remaining stable, going high or going low. Amongst other occasions, this is particularly helpful for me when checking before the gym and monitoring during the class. I started off with a trial sensor from Abbott and then self funded for a while until I had attended all of the necessary courses (BERTE etc.) which were a pre-requisite for the Consultant to sign it off for prescription. I also have a glucose monitor with testing strips as a backup but don't use it that much particularly as the testing strips are very expensive and the surgery is reluctant to supply too many on prescription as I have a sensor. It would be interesting to hear how you get on with the Libre.