CGM & how to go about them..

1) a GP will know absolutely naff all about CGM, you might as well ask a wall for all the good that will do you. Ask you DSN or your endocrinologist consultant.

2) here is a thread with cost comparison - http://www.diabetes.co.uk/forum/threads/cgm-gm-price-comparison.75106/

3) you're requirement for a CGM makes it seem, to me, like you are unlikely to achieve NHS funding. Usually funding for a cg, is reserved for those having severe hypos, or hypo unaware. It's worth askin if psychiatric difficulties with hypos would make this a possibility, but I wouldn't expect it.

4) you don't need a prescription for a CGM, you just buy it.

5) it's not a little machine that sticks on to your body, it's a sensor that sticks into your body. The sensor is injected, they are fairly painless injections and the inserter devices are all set up so its a pretty simple process to put a sensor in. Have a little search on YouTube for people putting on a dexcom or an enlite or a libre and that'll show you how it's done.

6) you do still need to finger prick. None of them are replacements for blood sugar testing. They are measuring interstitial fluid, not blood, they run about 20 minutes behind what your blood sugar is. They shouldn't be relied upon to be 100% accurate. Libre doesn't really want you to bolus off it (I think the free style bolus calculator wants you to actually enter a blood sugar from an actual blood test)and you can't rely on it for driving. You are allowed to bolus off dexcom G5, but you can't rely on it for driving and it needs calibrating twice daily, same with G4 except you aren't supposed to bolus in reliance on it. You shouldn't bolus off enlite, it needs calibrating 4x a day and you can't rely on it for driving.

Agree with everything said above, just to emphasise the point that right now in the UK finger pricking is a legal condition of holding a driving license if you're using insulin, so no choice. Personally I never bolus not correct anything without a blood test but I find the libre brilliant!

amylh1 said:

I'm so frightened of hypos that I leave BG running high & don't wanna do that anymore.

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They are fantastic for dealing with hypos. Because they measure all the time, instead of the snapshots you get from strips, it's really easy to see when your levels are dropping (they even show a downward arrow when dropping rapidly) and then take 5 or 10g to even things out before the hypo even happens. It's like being able to change the future. I've avoided plenty of hypos because of it.

The cost is a hassle, £100 per month for the libre, but seeing as that works out per day at the cost of a newspaper and coffee or return bus trip, it's worth it for just how much easier it makes life.

Abbott, who make libre, have applied to have it available on the NHS,so it's a case of wait and see. It's still early days, but I'm pretty sure that one fine day in the next few years, these'll be as easy to get on the NHS as strips are.

To begin with, I was testing just as much as I used to while I got used to it, but in the last couple of months, after getting familiar with the quirks and differences, I've cut right down to 1 or 2 tests a day and am perfectly happy to bolus from it. It's technically not recommended for bolusing, but that's because doctors and manufacturers are paranoid about getting sued, but in practice, once you figure out how to read it properly and calibrate with a couple of tests a day to get an idea of how close it's running to actual levels, it is possible to bolus from it. It took me a few months to get to that stage, but I'm pretty confident with it now. I don't drive at the moment so there's no DVLA issues - I'd test if I was driving.

They don't hurt at all. I've attached a photo of a libre sensor. See the black filament coming out of the white bit in the middle? That's what goes inside you. It's flexible. About 5mm long.

Before getting the libre I thought my Lantus was the right amount. I went to bed with reasonable figures and woke up with pretty much the same numbers. It wasn't long after wearing a sensor that I realised I was sleeping through 2 or 3 low events regularly! I wound the Lantus back from 12 to 9 and achieved a stable night bg reading. So even if you only have the starter pack it may be worth it for peace of mind.

Thanks for the really useful info above. I've been Type I for nearly 40 years & as my BG has become more difficult to keep in range recently, was considering CGM, though put off by self-funding.
So as I drive it will not stop me having to do blood tests as well & as my BG is likely to be higher rather than hypo, it might allow me to bolus off it to avoid more health complications - but the cost probably makes me stick to the traditional for now! On a final note, I would be worried if the NHS criteria is only for those at risk of hypos / lack of awareness, in trying to pursue that route - cos if you do / want to drive, the DVLA do not want those people on the road anyway, so could screw up your chances of a driving licence too.

The libre completely changed my life - I couldn't recommend it more. My hospital aren't very progressive and my DSN actually said "you must be stupid if you think that'll help you" before I started on it. But within 3 months my HbA1c was down by 2% and it's stayed down. It's alleviated soooo much anxiety for me around what my blood sugar is and "I'd better eat because I could be hypo soon." A few weeks before I started on it I had a really bad hypo because my blood test had said 21 or something and without thinking I'd taken a large correction and then walked to the shops while on the phone with my sister. By the time I realised my blood was in it's boots and I actually had to ask the shop staff to help me (thus making it one of the worst hypos I've ever had!) ... my conclusion was that the original blood test was probably wrong - with the libre you can see trends so this is much less likely to happen. I can also now test without stopping - walking along the road, while in a meeting, even on a spin bike - it allows an instant BG any time anywhere. The drawbacks are that it's another visible sign of T1D and you have to be a bit careful not to knock it off - I think you get used to that pretty quickly and then forget about it. The first 24 hours or so of a new sensor are less accurate and that's quite annoying - I normally put mine in the day before I start it to try to let it settle - that does seem to help. If you can afford CGM the bonus with that is that it will wake you up in the night if you're hypo, and if you use a pump you could get CGM to link to it (too rich for me). Of course the biggest drawback is the cost. The hospital told me "well if it was available on the NHS it could be abused" ... ***?!! I find that attitude so frustrating. The libre is about half the price of the 10 or so strips a day the NHS previously paid for for me. I'm lucky that so far I've been able to afford to pay for it, but I face a massive pay cut in July (austerity measures) - one think I'm certain of is that I would go without almost anything else if it meant staying on the libre and if necessary I think it will be well worth doing a second job to pay for it, although I do find it ridiculous that we have to!! The good thing is that if you're thinking about it you can buy a sensor and download the free app for your phone and you're good to go - even if you decide it isn't for you, those 2 weeks of data will be invaluable in checking your lantus / basal rates etc. (I planned to just do a 2 week trial but once I'd tried it there was absolutely no way I was going back!!)

Hope that helps xox

Lyntype1 said:

On a final note, I would be worried if the NHS criteria is only for those at risk of hypos / lack of awareness, in trying to pursue that route - cos if you do / want to drive, the DVLA do not want those people on the road anyway, so could screw up your chances of a driving licence too.

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Here's some info on NHS funding for CGM - http://www.inputdiabetes.org.uk/cgm/cgm-nhs-funding/

NICE guidelines on management of type 1 in adults say do not routinely offer CGM, consider offering CGM to those with severe hypoglycaemia, complete loss of hypo awareness or extreme fear of hypoglycaemia (I'm not aware of anyone achieving funding on this basis and would imaging there would be a demand for an actual psychiatric diagnosis of the phobia for it to be successful).

I have an NHS funded Medtronic 640 with guardian CGM, so the pump has a predictive low suspend feature. If it thinks I'm dropping, it turns my insulin off. I have NHS funding for the CGM because I have complete loss of hypo awareness and more than one episode of severe hypoglycaemia (requiring paramedic attendance) in 12 months.

My driving licence has been surrendered. But that's because I have no hypo awareness and therefore am not safe behind a wheel. That's not because of an NHS funding criteria. Funding for a CGM or not, if you don't have hypo awareness your not allowed to drive.

catapillar said:

Here's some info on NHS funding for CGM - http://www.inputdiabetes.org.uk/cgm/cgm-nhs-funding/

NICE guidelines on management of type 1 in adults say do not routinely offer CGM, consider offering CGM to those with severe hypoglycaemia, complete loss of hypo awareness or extreme fear of hypoglycaemia (I'm not aware of anyone achieving funding on this basis and would imaging there would be a demand for an actual psychiatric diagnosis of the phobia for it to be successful).

I have an NHS funded Medtronic 640 with guardian CGM, so the pump has a predictive low suspend feature. If it thinks I'm dropping, it turns my insulin off. I have NHS funding for the CGM because I have complete loss of hypo awareness and more than one episode of severe hypoglycaemia (requiring paramedic attendance) in 12 months.

My driving licence has been surrendered. But that's because I have no hypo awareness and therefore am not safe behind a wheel. That's not because of an NHS funding criteria. Funding for a CGM or not, if you don't have hypo awareness your not allowed to drive.

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Man! This condition really is the gift that keeps on giving!

I have a funded (short term - 3 months) Guardian Connect CGM.
They were initally (April 17) only available to patients that were NHS funded. They also have had supply issues....

However, applucations for funding are horrendoys and some patients like me have to give written evidence to the CCG Panel and can end up having to present tgeir case in person to the Panel of Doctors/chemists.

Its difficult. I had funding for 3 months and currently have another application being made. Everybody on medic team says funding wont be given this time. Although things are even worse for me now. I was awarded funding, not based upon oure hypo unawareness but because of other critical illnesses.

My current CCG have been known to refuse people with hypo unawareness and have lost their driving licences.

My evidence was huge. They probably gave up reading it!!

2nd round of applying I have given copies of all my data and another 11page document.

The cgm needs calibrating 2-4 times a day and works direct to iphone.

Accuracy is superb. I have managed to extend its use to 13 days only... compared to dexcom thats not good.
Accuracy is fantastic though and the skin dressing stuff does not cause any reactions with me. Other makes does.
Sensors currently cost the NHS £37 and the transmitter £475 a year. It was hoped the same price would apply to patients when they could purchase. Patients may well be able to purchase them now, I havent checked to be honest, as I know they have had supply issues.

Far superior to Libre for accuracy. Licensed to be worn on love handles,bum n tum. Great for me as both my arms arent suitable now for sensors...

I use the libre and the other day my replacement sensors hadn't arrived so I had to go without it was like dealing with my diabetes blindfold. I can't praise it enough. I do bolus off it if it says I'm in range, if I'm not, I blood test.
It is VERY frustrating to see posts all over the Internet complaining about libre accuracy when it reads 2/3 mmol out from a blood test.
It's not reading the same fluid
It's giving you information whether you're rising or falling too a BG reading of 5 is all well and good but when my libre says 6 and dropping like a bomb, I trust it. It has prevented many many hypos/hypers and it's invaluable for sorting out your basal.

My libre was very accurate initially but at the time I was advised to use only 1 arm due to lymph node removal in the other. Great to start off with but after 5 months it was at least 2mmol out all the time...

For me, to have a sensor applied to my love handles and bum (too lean for stomach) the Guardian Connect offers me more scope to change sites and areas. I cannot use either arm now. I have had lymph nodes removed from bith.

This is probably unique to me... I doubt if theres many women in my situ.

I fully realise it is different fluid but except when in hosp 4 weeks ago and my electric signals in my body must have been really erractic the Connect has been far superior, especially in the first 24hours and no need to put in the sensor in advance.

Hi

I am currently on a trial using the elite sensors with 640g medtronic pump and I must say i'm impressed. I had an issue initially but I think thats because I bled when the sensor was inserted. 2nd attempt and with a delayed time until the sensor was connected it seems to be pretty accurate.

As I have the 640g it uses the smart guard technology to suspend my insulin before hypo which has only happened once so far but helped me to see a pattern and make changes to my basal rate.

I have been quoted for a starter pack of 5 sensors (which need changing every 6 days) and a transmitter for £585. I would love to fund it longer term but I think I may have to dip in and out a bit which is disappointing. Who knows one day it may be cheaper to run but I doubt it will be ever free on the NHS.

Does anyone know who uses the elite system if you notice a difference when the sensor is inserted and left to "rest" several hours before connecting the sensor? The first sensor I tried was initially 5mmols out most of the time and then failed, I'm not sure if it was related to the trauma from the insertion or not. However with the next sensor I inserted and then waited 6-7 hours before turning the connection on it was pretty spot on from the word go. Has anyone else experienced this?

Thanks

Helen

Minnie_19 said:

I'm not sure if it was related to the trauma from the insertion or not.

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Yes, it is. Even though the manufacturers of libre, dexcom, medtronic say that you can switch it on right away, they're talking rubbish.

Poking a big needle in causes trauma, then repair cells come along to repair the damage, and those cells chew up glucose big style, which is why there's so many reports of people getting abnormally low readings in the first 24 hours.

Levels are fine elsewhere but because repair cells are busy eating glucose in the trauma area, there's less glucose for the sensor to measure, so it correctly shows it as low in that area, even though it's fine elsewhere.

Leaving it for a day allows it to settle.

Scott-C said:

Yes, it is. Even though the manufacturers of libre, dexcom, medtronic say that you can switch it on right away, they're talking rubbish.

Poking a big needle in causes trauma, then repair cells come along to repair the damage, and those cells chew up glucose big style, which is why there's so many reports of people getting abnormally low readings in the first 24 hours.

Levels are fine elsewhere but because repair cells are busy eating glucose in the trauma area, there's less glucose for the sensor to measure, so it correctly shows it as low in that area, even though it's fine elsewhere.

Leaving it for a day allows it to settle.

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I fully agree.

Sure the device will start interpreting readings and display numeric values, but they're often not all that accurate for the initial 24-36 hours in my experience.

My most recent Libre, I threw in two days before activating. I can say that it's been the most 'accurate' to date. And is almost definitely down to leaving a minimum period of 24 hours before activation.

I don't know if it's already been mentioned, but the Libre has integration with Smartphones as well which is very handy. Not only is it handy, but it means that you don't have to pay for the £157.50 starter pack, but can buy either one or two sensors by themselves - ultimately saving you a good bit of dosh.

If you use the LibreLink smartphone app over the Libre reader (which is supplied with the starter pack) then the generated reports aren't quite as good. But still decent.

Whatever decision you choose to make @amylh1

Thank you for confirming that. I thought that was the case but nice to see others have experienced it too.

Helen

Scott-C said:

it's really easy to see when your levels are dropping (they even show a downward arrow when dropping rapidly) and then take 5 or 10g to even things out before the hypo even happens. It's like being able to change the future

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This is a perfect, perfect way to put it, @Scott-C !

Claire007 said:

I use the libre and the other day my replacement sensors hadn't arrived so I had to go without it was like dealing with my diabetes blindfold. I can't praise it enough.

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I was late ordering my last batch so until next week I'm without a spare and it's making me really antsy! I can't imagine not having my Libre now - I've used it continuously for over a year, and although I struggle to afford it, it's a non-negotiable part of my life. Love it!

GrantGam said:

I fully agree.

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Minnie_19 said:

Thank you for confirming that.

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I cheated a bit by reading this article!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903977/
There's lots of good stuff on that website, although some of it is paywalled. Most of it is way above my vague memories of H level chemistry from 30 odd years ago but I can usually get the gist of it. There was another article which said that, quite apart from the complexities of the electrochemistry involved, one of the, I quote, "serious difficulties" was finding glue good enough to stick for two weeks without causing allergic reactions - another recurring subject of discussion on this website!

I take my hat off to the people who design these things. It was only after I read a few articles like the one above that I realised that measuring glucose is really not the same as weighing a physical object. It's taking the glucose, breaking it down with glucose oxidase, and then measuring the electric current which comes from the breakdown. It's amazing that we're getting figures from that sort of twitchy unpredictable unreaction which are still in the same ballpark.

Snapsy said:

This is a perfect, perfect way to put it, @Scott-C !

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Cheers, snapsy!

It's that sense of being able to see things coming and change them before they happen that makes such a difference. Like I can steer it, instead of it steering me. Proactive instead of reactive. I've felt remarkably content since getting libre'd up, like the playing field has been levelled.

Agree with your later post about feeling antsy! One of mine broke early in the day at work, just jammed and read the same figure , felt like going back to the Stone Age for the rest of the day till I got back home and put a new one on. Got a free replacement, though!