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

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jackdinn said:
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.
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So i dont know. Maybe iv just never had one.
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I agree with @helli Personally in your situation, I’d be finger-pricking only for a period of weeks (you can still wear a Libre sensor if you want for the alarms) so you can see exactly what’s going on. I also suggest you start carb-counting properly and look at the timing of your bolus (meal) injection. Good timing can help reduce any spike after a meal.

Type 1 is a pain in the bum, but it’s also potentially dangerous so looking at your hypo awareness is important. To be clear, a hypo is determined by blood glucose level not by feelings. So if you’re 3.2, say, it’s a hypo whether you feel it or not.
 
jackdinn said:
And i have no clue what a honeymoon period is 🙂
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Ooops, I have just realised no one has explained this.
Our insulin producing beta cells don't all suddenly die off at the same time. It is usual for our body to continue producing some insulin after we are first diagnosed until all these cells are killed off.
For me, I found that my insulin dose slowly rose over the first 8 years after diagnosis. For others, they find their cells die off earlier but may suddenly awaken and splurt out a bit of insulin causing some unpredictability.

The period whilst the insulin producing cells are slowly dying off is called the "Honeymoon Period". It is rarely comes with the fun of a honeymoon in the marital sense!
 
Ok, thx all. Its all getting to much now. Food is a bad point for me. I never ate, i never really did. I have managed to figure a repeating meal for 5 days of the week and that was a nightmare to think of, but the other days of the week there is nothing that i can think of that i would eat so i just ignored them days and have nothing, the rest of the day is just grazing minor crap. This was all before diabetes. Now they have tried to say i have to eat 3 times a day, well that ant happening. And as for trying to change what we eat and count whatever's, well na. I just don't eat, i don't like much any more, and I'm just too ill (other things) most of the time to eat at all.

I shall just slide back into my complete reclusive, depressive, anxious state.

I appreciate the help from you all. I shall look into everything that has been suggested about the devices. This is all invaluable information.

Thx.
 
jackdinn said:
Ok, thx all. Its all getting to much now. Food is a bad point for me. I never ate, i never really did. I have managed to figure a repeating meal for 5 days of the week and that was a nightmare to think of, but the other days of the week there is nothing that i can think of that i would eat so i just ignored them days and have nothing, the rest of the day is just grazing minor crap. This was all before diabetes. Now they have tried to say i have to eat 3 times a day, well that ant happening. And as for trying to change what we eat and count whatever's, well na. I just don't eat, i don't like much any more, and I'm just too ill (other things) most of the time to eat at all.

I shall just slide back into my complete reclusive, depressive, anxious state.

I appreciate the help from you all. I shall look into everything that has been suggested about the devices. This is all invaluable information.

Thx.
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If you are not eating I assume that is when you don't inject your Novorapid as you said sometimes.
If you have a restricted number of foods you like and eat then it shouldn't be too difficult to work out the carbs so you can then inject the correct insulin dose.
I know it is not as simple as that but may be a starting point.
It sounds as if you need more support from your diabetic clinic.
 
Can you give us more info about your hypo unawareness? Is it self diagnosed?
Is that screenshot the only evidence that you have ever been hypo and is it a one time only event or do you have other Libre recordings of lows and have they always been during the night and if so do they all look similar to this. Have you been able to double check it or others with a finger prick and if so what was the result?
If more than once and always during the night but not double checked, it is possible that they were compression lows, espcially if your levels dropped rapidly with no active fast acting insulin in your system (ie NovoRapid) and returned to a high level without eating carbs. It is also important to note that real hypos (ie not compression lows) whilst asleep may wake you up but not give you obvious hypo signs unless your levels are really low... below 3.5. Things like distorted vision and a feeling of being wrapped in cotton wool are hard to detect when you are asleep and I don't get wobbly legs or a tingly tongue when I wake up from sleep hypo like I would when awake.
To my mind, if the only evidence you have of hypo unawareness is that your Libre shows you in the red during the night on one or maybe more than one occasion, with a steep descent and fast rise afterwards and no finger prick corroboration, then I would say that you are mistaken in that assumption because you may simply have had a compression low and never have actually been hypo.

I would like to say that you are doing really well considering the lack of support you have had and with more knowledge and understanding of diabetes management and carb counting and insulin adjustment you could achieve some fine tuning to get more stable levels which will lead to more accurate results from Libre. There was a time when I was finger pricking a lot more than 10 times a day to get enough info to get that level of understanding, before I got Libre, so don't feel you are restricted to testing at set times to gain that understanding..... although I found I had to self fund extra test strips to do that.... and indeed I self funded Libre in the early days before I managed to get it on prescription as many others did here. We are very lucky to get it prescribed now, but it is important to understand it's limitations which are probably shared more clearly on this forum than anywhere else.

The algorithm info regarding extrapolation to make up the lag behind blood is particularly useful to understand as that makes a big difference when the rate of change is changing and levels have been rising or falling fast but are reaching a peak or trough where they are about to change, so it slows and changes direction where Libre is still predicting the fast rate of change in that direction, so the extrapolation overshoots because it is working on the faster rate of change. This is partoicularly relevant when your levels are very peaky and variable. It is however important to understand that BG is constantly changing because there are something like 42 factors which affect it and we only have influence over some of them, so yes managing BG levels with insulin is extremely tricky and we definitely do not have full control, so we will not get it right all the time and we can only hope to get it reasonably good most of the time with practice, but CGM certainly helps provided we don't develop a habit of trying to overmanage it.
 
jackdinn said:
Now they have tried to say i have to eat 3 times a day, well that ant happening.
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This is not true ... at least not when we have Type 1 diabetes treated with basal bolus insulin regime.
We can chose to eat when we want. Sometimes I have 2 meals a day. Sometimes I have 4 meals., Sometimes I snack.
As long as I take my insulin I eat, this is not a problem.
 
Sorry, just read your last post, after I posted, so didn't realise you were feeling over loaded.

If it is any consolation, I don't eat 3 meals a day and I graze a lot and I can manage that fine although I try not to graze on conventional rubbish. I will have half an apple and a chunk of nice cheese for lunch and perhaps some nuts or a pot of olives or some feta stuffed peppadew peppers. I do usually have breakfast (yoghurt berries and seeds) but after that I might only have a proper meal 2 or 3 times a week, so it is possible to continue grazing and you certainly don't need to eat 3 meals a day and can still have good management but you need to be carb counting to do it because those fixed doses are obviously way too big for grazing.
 
helli said:
This is not true ... at least not when we have Type 1 diabetes treated with basal bolus insulin regime.
We can chose to eat when we want. Sometimes I have 2 meals a day. Sometimes I have 4 meals., Sometimes I snack.
As long as I take my insulin I eat, this is not a problem.
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I agree! I was a grazer before I was diagnosed. I tried to eat three meals a day when I was first diagnosed (on my DSN's insistence), but it meant eating a big plate of food in one go - I hate feeling really full - and then waiting 6 or 7 hours until the next meal. It just didn't suit me or my lifestyle. So, I've gone back to how I've always eaten...some days more, some days less. Find what works for you @jackdinn and carry on from there. 🙂
 
jackdinn said:
Ok, thx all. Its all getting to much now. Food is a bad point for me. I never ate, i never really did. I have managed to figure a repeating meal for 5 days of the week and that was a nightmare to think of, but the other days of the week there is nothing that i can think of that i would eat so i just ignored them days and have nothing, the rest of the day is just grazing minor crap. This was all before diabetes. Now they have tried to say i have to eat 3 times a day, well that ant happening. And as for trying to change what we eat and count whatever's, well na. I just don't eat, i don't like much any more, and I'm just too ill (other things) most of the time to eat at all.

I shall just slide back into my complete reclusive, depressive, anxious state.

I appreciate the help from you all. I shall look into everything that has been suggested about the devices. This is all invaluable information.

Thx.
Click to expand...

You don’t need to eat 3 meals a day. You can eat in a way that suits you once you’ve got more of a handle on things. You say you didn’t eat much before diagnosis and had to figure out a repeating meal that you could eat 5 days of the week. Are you ok to explain a little more? Are you receiving any support for that?

Could you eat the repeating meal on the other two days of the week too? There are simpler options if you can’t deal with regular meals or limit the foods you eat. You can have snacks if you find that easier. Some days I graze too. It’s ok.

Sorry you have other things to contend with as well as the diabetes. You’re not alone in having other issues. People here have a variety of physical health and mental health conditions too. You’ll get nothing but support and kindness here.
 
You people are really nice people, this is something new to me on the types of forums/irc/messaging i usually hang out on (and thats saying something, lol). But its a lovely change.

I love all the diet suggestions and advice, i shall look at it all in more detail now i know it may not be quite so bad.

So, i have spent a good few hours today talking with Abbott, again. (o what fun). The first lady told me i should uninstall the app and then re-install it. I warned her that doing that would certainly not help the alarm, in fact it would completely disable the alarm function because as i understood it, if you don't start a tag on the actual device you want to use then the extra functions like the alarm will NOT WORK, and i was not even sure if the tag itself would still work either. She assured me none of this would happen.
Low and behold, the tag was happy to re-activate with the newly installed app, but just as i warned the Bluetooth stuff was completely disabled, and it even has a warning box pop-up saying as much.
I ended up calling them back 3 times, cant believe they don't know their own device. Anyhow, to cut a long short story sideways, i have been sent a new reader and a couple of new tags.

  • So i could try one of the spare tags on the newly re-installed app on one of my phones.
  • Try both spare tags on each phone with the app removed and then reinstalled.
  • I could downgrade the app and try one or both tags.
  • Or just use the reader and could just keep the tags as spare, which would be really handy.

What i would be missing, i think, is this new feature that they have introduced into the app where you don't have to even touch the NFC at all. it automatically updates the graph (as long as your BT connection is working). I am assuming that the reader does not have this ability??

O well, at least i have been given the option to choose 🙂
 
jackdinn said:
I am assuming that the reader does not have this ability??
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Correct, reader needs to be scanned to get a reading.

Also they’re called sensors not tags
 
jackdinn said:
They are tags to me ^^ (as in police tags ("Fred is on a tag"), which are really sensors too) (and no iv never had one) :D
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Ok but that will be confusing to other newcomers to the forum
 
Great that you have got a reader out of Abbott as well as a couple of sensors as that should enable you to do a bit of experimenting to see what works best for you as an individual even if it did take several hours out of your life! Only you can figure out what fits best with you and your lifestyle and your mental health and the diabetes should sort of fit in to that with minimal adjustment as long as you are not too unhealthy to start with.....My diet of multipack Snickers had to change 🙄 but eating regular meals is a step too far for me. So,metimes I am up for it and cooking nice wholesome meals , but often I struggle with that so try to ensure i have plenty of easy food on hand which is simple to bolus for (calculate and inject mealtime insulin) or doesn't need any mealtime insulin. Then if I need a correction later I just jab a bit of meal time insulin to bring me back into range. For me Libre has just become a long running computer game where I try to keep my levels in that 4-10 range by nudging it up with a Jelly baby if I am low 4s or jab a unit or two of insulin if I am heading up into the 10s or above. I find this takes a lot of the strain out of my diabetes management.
 
helli said:
@jackdinn
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
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Our new door system at work is set up via phone app, you can only enter with your phone. Most employee have iphones, work provided phones, we have a small amount of employees with samsung and they have had such issues with their devices and getting into the office. Which the supplier failed to mention when we were in the set up stages, and now only we have installed all the tech for the doors and we are £££ into the process have we became aware.
 
@jackdinn I would suggest you contact your GP and ask to be referred to the Diabetes team at your hospital. What it sounds like you actually need is support from someone who gets diabetes and who can help with your needs. A diabetic specialist nurse (DSN) is normally this person.
Mine is worth her weight in gold, and so are the rest of her team. I can call or email her anytime, and she if she is off one of the team will help me. They even help when my GP surgery are being useless. Most have the really useful ability of helping fix one bit at a time which helps with everythign else.
If your levels are all over you will feel like rubbish mentally just because of this, your poor brain and body will be running in survival mode and high blood sugars impact mental health massively. You really haven't been given any support at all and it is shocking. But you can ask for the right support and it is out there. Good luck. We are here for you and we get it. You are never alone even if (I know myself) it does feel like it. It will get better and you don't have to feel ill. You can feel well and happy it is possible.
 
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