Libre 2. New diabetic, new to libre. How is such junk allowed to pass medical regulations and what to do?

[jackdinn]

Please excuse my rant ^^

I was diagnoses with type 1 a year ago out of the blue. Hospitalised for a couple of weeks. It took them a year to get me prescribed the CGM that i was supposed to have, but i have had it for a couple of months now.

I was careful that my phone was on the recommended list from Abbott. I got a Huawei P30lite.

Problems 1. Constant disconnection of the Bluetooth so the alarm is almost useless. It does connect, sometimes, I would say the little red badge on the icon that shows the Bluetooth is not connected is there about 90% of the time.
I have read a lot of people have said that this is a very common problem that never used to be the case. Older versions of Librelink are said to have worked just fine, without problem.
I spoke with Abbott, they said "its prob the tag is a faulty tag" well i have been through 4 now, all the same. I phoned them again, they ended up kinda implying that i should try another phone, so i did.

I when out and brought a new Samsung A71, but it still is just as bad. I am at a loss.

Problem 2. Even if the alarm was working, it seems that it would be waking me up in the middle of the night for no reason at all because it always measures at least 2 mmol up to 7mmol lower than it actually should be measuring (and yes i am taking the lag into consideration). I have been benchmarking it for half a month now (spanning 2 tags, week on each) compared to finger prick and it is so bad that all you can really use it for is to say the direction of travel. It will often be in the red for no reason at all. I have had it say 3mmol and measure 9mmol. You just don't need this in the night.

Problem 3. Just today i changed the tag again and this allowed the app to start using the newest update. This is supposed to not even need to use the NFC but is supposed to constantly update the graph from the BT connection. But what happens if the BT connection is hardly ever connected? Well you get a messed up graph that just says "Signal loss", no green/red banner showing what the last value was and sometimes even the graph is completely blank as well. Yes you can get all the info back after you use the NFC but the whole thing is much much worse than it even was before, and that was bad.



So my main question is, as a lot of people on forums/reddit etc say it was fine before one of the updates (i dont know which one) should i try downgrading it to an older version? If so which? Can i just install it and continue with this tag or do i need to wait for this tag to run out then start with the new install and a new tag?

How on earth does such an important medical device get into such a state?

Thx all.

 

[Lucyr]

Why not go back to fingerpricking if you don’t like it?

 

[jackdinn]

Why not go back to fingerpricking if you don’t like it?

Yes this is a very good point and it just might happen. Thing is if this device was actually working as it sounds like it used to, it would be an absolute god send. I am desperate to at least try to get it working. If i can roll it back to a previous version that may not have all the bells and whistles but actually works then that would be great.

 

[Tdm]

Yes this is a very good point and it just might happen. Thing is if this device was actually working as it sounds like it used to, it would be an absolute god send. I am desperate to at least try to get it working. If i can roll it back to a previous version that may not have all the bells and whistles but actually works then that would be great.

My libre continously woke me upcwith false alarms. I got funding for dexcom g6. Its been great.
Don't give up, you should have a cgm, perhaps you could try a dexcom. I think you have a right to dexcom one, is same cost as libre. Yes,not so many phones are compatible but you can use the 'build your own dexcom app' from some random on reddit, or use the reader (well, on g6. Not sure about dexcom one)
I also hear libre 3 is good but it didn't seem to be an option locally...its the most accurate, and very small

 

[rebrascora]

I used to use the reader for Libre up until 3 weeks ago when I managed to lose it. The reader worked absolutely brilliantly for me. I really really loved it and my TIR was consistently high 80s-90%
I am currently using a second hand iphone I bought as a back up (my own mobile is was not supported) and I was fortunate not to get caught up in the update debacle last week and it is working with CGM but the first night the signal dropped out during the night despite being on the bedside table on charge so no more than a few feet away and was disconnected for several hours. Not had that problem since, so I have no idea if it was just some sort of teething problem but I am not really enjoying the rtCGM for a variety of reasons and whilst I am trying to maintain an open mind until the end of this sensor in 5 days time, my current view is that I will be very happy to go back to using a reader with my Libre. Scanning is very simple with the reader and having used it for 3 years I can operate it very easily when half asleep and hypo and the battery lasts a week between charges, rather than the phone needing charging every night. If you are having consistent problems with your phone, then Abbott should supply you with a reader which can also act as a BG meter, so if you can get the Optium test strips prescribed, it will provide you with the finger prick back up device for DVLA.

As regards the problems you are having with it reporting false lows during the night, these will likely be compression lows where you are lying on the arm with the sensor which compresses the tissue under the sensor and causes the chemistry in the tissue to change. You gradually seem to learn to stop sleeping on the Libre arm or to place the sensor on the arm where it doesn't happen. A difference of just an inch further round to the back of the arm can make a difference.

As I said, I absolutely love the system but I am not a fan of the phone app and will probably be going back to the reader this weekend. The reader is accurate enough for me to bolus and correct from so long as I take into consideration that levels need to be stable when I make those decisions. Libre is least accurate when levels are changing fast and particularly when levels are changing direction due to fast acting carbs or insulin or exercise, so you learn to interpret those situations differently.

Other things to consider are that some peoples' bodies respond to having a foreign object fired into them more strongly than others but the 60 min warm up time generally isn't long enough for that reaction to settle down, so many of us apply our sensor the day before we intend to activate it, to let it bed in and any reaction to subside. By doing this we seem to get more reliable readings from the start of the sensor. There are however some people whose body chemistry does not get on with the system and some of those people find the Dexcom system works better for them, so in your shoes, I would try the Libre reader and if you still have no confidence in the system or it just isn't giving good enough results for you, ask to try the Dexcom. I think you are likely to be offered the basic Dexcom One model which is slightly bigger than Libre and needs a transmitter which sort of piggybacks onto the sensor.

Hopefully you will find a solution which works for you, but if all else fails you have finger pricking to fall back on and many thousands of people have managed fine with that for decades. I find if I get a bit chewed off with Libre, a few days of finger pricking really improves my appreciation and a lot of the time it is my diabetes which is making me chewed off rather than the technology. 🙄

 

[jackdinn]

My libre continously woke me upcwith false alarms. I got funding for dexcom g6. Its been great.
Don't give up, you should have a cgm, perhaps you could try a dexcom. I think you have a right to dexcom one, is same cost as libre. Yes,not so many phones are compatible but you can use the 'build your own dexcom app' from some random on reddit, or use the reader (well, on g6. Not sure about dexcom one)
I also hear libre 3 is good but it didn't seem to be an option locally...its the most accurate, and very small

Cheers, Yea i forgot, the whole reason i was supposed to get a CGM out of the hospital was that not only was i a T1 out of the blue, i had no idea what i was doing (still don't ^^, iv only had 1 diabetic checkup since the hospital visit of near coma and KTA's for a week. Now they cant get blood from me no matter what so thats kinda been forgotten about. But as for support, nothing really. Just thrown to the wolves).

However, i dont feel hypos! This was the second part of the main reason. I really need an alarm at night that i can trust. I also really need a CGM that i can learn from as 4-5 finger pricks a day tell you nothing really.

I was so hopeful when i got this device

Problem is im sure iv been told that the only one available on NHS is this libre 2? Am i wrong? if not how much are we talking about?

 

[jackdinn]

As regards the problems you are having with it reporting false lows during the night, these will likely be compression lows where you are lying on the arm with the sensor which compresses the tissue under the sensor and causes the chemistry in the tissue to change. You gradually seem to learn to stop sleeping on the Libre arm or to place the sensor on the arm where it doesn't happen. A difference of just an inch further round to the back of the arm can make a difference.

Ahh, this is excellent advice. You may well have hit the nail on the head. I shall have to tinker and see what i can see. Thx for that 🙂

Other things to consider are that some peoples' bodies respond to having a foreign object fired into them more strongly than others but the 60 min warm up time generally isn't long enough for that reaction to settle down, so many of us apply our sensor the day before we intend to activate it, to let it bed in and any reaction to subside.

Ok, I dont think my skin has too bad a reaction to it, i mean it does leave a red mark where each site has been but i do move it around. In fact, still trying to figure the range of area that i can place it. Almost stuck it to far around today so its almost rubbing on my back, but think it'll be ok.
Good advice again, though.

As I said, I absolutely love the system but I am not a fan of the phone app and will probably be going back to the reader

Hmm this reader, its another bit of kit to carry around
Does it have all the data organization like the averages, estimates, hba1c guess and Bollinger bands etc or is it just the main graph and alarms?

 

[rebrascora]

The reader has Logbook, Daily Graphs, Average Glucose, Daily Patterns, TIR, Low Glucose Events and Sensor Usage.

All the other data like HbA1c prediction (for what it is worth) and AGP reports are available on LibreView. If you have never accessed LibreView and looked at all the reports it is quite impressive.... if you like data.... assuming you have linked your LibreLInk app to LibreView.... this allows your clinic to access your data, so if they have access, you have a LibreView Account. Apologies if you are familiar with LibreView but many people who use LibreLink seem to be completely oblivious to it, whereas with a reader, you have to download to it every 3 months minimum.... so you tend to be more familiar with it.

 

[rebrascora]

And the reader is smaller and lighter than a phone and scans more easily and will act as a BG meter so if you drive it doubles up as your back up device for DVLA compliance.

 

[jackdinn]

Im an old tech head so yea, iv pressed every button and tweaked every setting. I have generated a libreview dataset, your right it is impressive, although i didnt understand why if you have a cloud data setup like that why does it not sync back to your devices? Just a rhetorical question.

Sooo... who/where would i ask if i wanted to look at getting a reader? My diabetic clinic does not seem to like anything much to do with the CGM devices, they always say ring Abbott.

 

[jackdinn]

So my main question is, as a lot of people on forums/reddit etc say it was fine before one of the updates (i dont know which one) should i try downgrading it to an older version? If so which? Can i just install it and continue with this tag or do i need to wait for this tag to run out then start with the new install and a new tag?

Please dont forget my original question. I have access to all the previous .apk's I just need some idea of when i might try rolling it back too?

 

[rebrascora]

Get on to Abbott about a reader. Stress that you are not having success with the app and you have tried two different phones and you are considering moving to a different system (Dexcom) but would like to try a reader before you give up on Libre.... Hopefully that will encourage them to send you one.

I believe there is an archive of previous updates that can be accessed to download but where you find them I don't know..... I don't think it is on the Abbott website but probably a facebook group We have a member who could probably help but I am desperately struggling to remember his username and I haven't seen him on the forum for quite some time.... I will probably wake up in the middle of my sleep with a eureka moment of remembering 🙄 but it is being elusive in one of the dark corners of my memory at the moment. If you have only been using the system a short time, then presumably it was the previous one that was working for you. I should say that I am a tech dinosaur so unfortunately not the best person to give you the answers you need regarding this. @Bruce Stephens might be able to help. Or maybe trying one of the unofficial apps instead of LibreLInk would work for you. Some of those can even be calibrated if you feel Libre is consistently off for you. Bruce should be able to advise you on those options.

 

[helli]

@jackdinn it looks to me as if you have been given technology without anyone explaining the limitations such as compression lows, bedding in time and lack of accuracy outside "normal" range. These limitations are not Libre limit. You will find them to some extent with all CGMs
As for the "lag", again, you have been misinformed. Yes, interstitial fluid does lag behind BG. However, the Algorithm Libre uses to convert ISR to BG takes this into consideration by extrapolating the current trend. This is only an issue when the trend changes such as when recovering from a hypo. Libre will show a deeper hypo for longer
When I chose my last phone, I avoided Samsung because it has more Bluetooth issues than other brands. This maybe because it is the most popular brand but not a risk I was willing to take
If you are an old tech hand, you could check out the unofficial LibreLink alternatives such as xDrip and Juggluco. xDrip is definitely not available from the app store - you have to get it from GitHub. I used xDrip for about 3 years and preferred the app. It does not upload to LibreView but my diabetes team did not see this as a problem.
Others have mentioned the Dexcom G7. However, this is not available on NHS for everyone and not everyone is able to self fund. You could also ask about Dexcom One. According to the NICE guidelines, this should be available to all with Type 1 as an alternative to Libre 2. It is a basic Dexcom with a few limitations such as not being able to share.
Whilst CGM technology is not perfect, many of us coped pretty well with finger pricks for decades. And before then, we have members who started with urine tests. Maybe I am a softy but I appreciate what I get and the amazing advances in technology but am very willing to back this up with the old school methods.

You seem to have some issues regarding your diabetes diagnosis and care. Pleases remember that it is a mental shock to be diagnosed with a chronic condition out if the blue. Some of your frustrations may be down to "grieving".

 

[SB2015]

Hi @jackdinn

I hope that you are able to find a way of using your Libre that suits you and that you are able to get a reader from them. Compared to the old resources that we had available this is a game changer, but like all things there are some limitations. I know using a sensor gives me sight of the patterns in what happens to my levels between meals, enables me to head off the highs and lows most of the time (and that was before the addition of any alarms) and to identify some foods that I had not realised were spiking my levels so much. Using a sensor also helped me to find out how early to inject my bolus before eating in order to reduce post meal spikes. I hope that you are able to make this work for you, recognising that it will not be perfect.

Apart from your Libre, how are you managing after your diagnosis. It is a shock whenever this happens, and takes a bit of getting used to. What insulins are you using? Are you still in the Honeymoon Period?

 

[jackdinn]

Morning all,
Thx for the kind words, I already have all the archived versions i just dont know how far back to go and should i wait until this tag runs out then reinstall the older version and then start a new tag, or would i be ok to install the older version and continue with this current tag? I get the feeling its the former.


All i was told about CGM was the 60min online "course" thingy that honestly said less than the leaflet in the box which i had already read. I used the QR code on there and watch a couple of their videos as well. Like all my outpatient care it's been .....emmm minimal shall we say. I can't really blame anyone though, they were still in covid period when i was hospitalised. I was diagnosed with covid (for the first and only time, thx hospital ^^) i was discharged that very day. I had no idea how to deal with diabetes, they told me i couldn't go home because of covid (had to self-isolate), i could hardly even walk.
I can sum up my treatment by saying, i still have not been diagnosed with the type of diabetes properly, they just assumed it must be type 1 during the hospital stay, no one has ever done the tests needed. So my paperwork probably does say type 1 but as my doc said this is just a permanent assumption until proven otherwise.

Yes i am angry, your bloody right im angry, but meh what ya gonna do.

Im on 32units of Abasaglar, 12units of NovoRapid 3 times a day (sometimes). Im adjust them myself, i have had a couple of brief phone calls from Norwich Elsie Bertram centre and they were happy for me to raise them very gradually until i get my bloods below 20 (at least some of the time) although when i was discharged i was over 35 constantly.

Im now below 10 most of the time, but its so up and down i dont see how anyone could even try and control this (certainly not with finger pricks).

Anyhow this is my screen this morning (fun ehh ^^)


But i this is what iv got myself too (my last 30 days)


And i have no clue what a honeymoon period is 🙂

 

[Pumper_Sue]

And the reader is smaller and lighter than a phone and scans more easily and will act as a BG meter so if you drive it doubles up as your back up device for DVLA compliance.

OP wont be allowed to drive as no hypo awareness.

However, i dont feel hypos! This was the second part of the main reason. I really need an alarm at night that i can trust. I also really need a CGM that i can learn from as 4-5 finger pricks a day tell you nothing really.

 

[Bloden]

Sorry to hear the Libre is causing you so much hassle @jackdinn.

It's a pain that Abbott keep faffing around with the app cos the technology - when it works - is fantastic. I lost the alarms on my phone cos of an app-date last July, and ended up getting Abbott to send me a Libre 2 reader. So, I've got the low alarms again, and I'm much happier.

Another option would be to switch to the Dexcom 1 (it's on prescription too, not sure if that's across the whole of the UK yet tho). Good luck! 🙂

 

[Inka]

Cheers, Yea i forgot, the whole reason i was supposed to get a CGM out of the hospital was that not only was i a T1 out of the blue, i had no idea what i was doing (still don't ^^, iv only had 1 diabetic checkup since the hospital visit of near coma and KTA's for a week. Now they cant get blood from me no matter what so thats kinda been forgotten about. But as for support, nothing really. Just thrown to the wolves).

However, i dont feel hypos! This was the second part of the main reason. I really need an alarm at night that i can trust. I also really need a CGM that i can learn from as 4-5 finger pricks a day tell you nothing really.

I was so hopeful when i got this device

Problem is im sure iv been told that the only one available on NHS is this libre 2? Am i wrong? if not how much are we talking about?

Two points @jackdinn :

- If you have no hypo awareness, you shouldn’t drive as you’ll be breaking the law

- If you have no hypo awareness, you might be entitled to a Dexcom G6 or G7 CGM. The Dexcom is great.

As regards the lack of contact, that’s poor. If I were you, I’d jot down some questions and give them a ring. Often you’ll be told you’ll have a callback from a DSN but that’s ok.

 

[jackdinn]

- If you have no hypo awareness, you shouldn’t drive as you’ll be breaking the law

I dont, no worries.

But i am now not sure. I mean iv never had a hypo, iv been out of hospital for just over a year and all iv got to go on is the Libre and now people are saying that this (and others like it but lower) was probably not what i think it was.

So i dont know. Maybe iv just never had one.

 

[helli]

@jackdinn
According to that screenshot, you HAVE had a hypo - anything under 4.0 is treated as a hypo for someone treated with insulin. However, it may be a Libre anomaly which is why the advice is to always check highs and lows before correcting unless you have definite hypo symptoms.
I also notice big swings and you mention that you have spent a lot of time with your numbers higher than 10. At these levels, CGMs are not accurate which may explain some of the issues you are experiencing.
It sounds as if you are on fixed doses. This will not be helping your diabetes management. Carb counting may seem like a pain at first but as it is only carbs that turn to glucose which insulin works with, the amount of insulin for a plate of pasta should be completely different to the amount needed for an omelette. I would recommend asking about a DAFNE course when you are able to talk to your DSN. If this is not possible, there is an online course called Bertie which is often recommended. This will help you understand more about your Libre readings and how to adjust your dose accordingly, including when you take it relative to food.
I was diagnosed nearly 20 years ago. There was no test - it was just assumed I had Type 1 which has proven to be correct. I was carb counting within 6 months and my HBA1C has been in the low 50s/40s since diagnosis... even with finger pricking for 15 years.
It is possible to manage (but not control) this - some people struggle more than others but I highly recommend learning about diabetes and the technology we have. Push to get an appointment. Ask questions on the forum. Do the Bertie course, read books, ...