Continuous Glucose Monitor

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anniehi

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i would love to have a Continuous Glucose Monitor, I can manage the Insulin injections but my blood glucose is so erratic since I had a total pancreatectomy it is slowly driving me mad trying to control it. Last week my reading was 9 and half an hour later it dropped to 2.7! I know they are very expensive and wonder if anyone has managed to get one on the NHS? I have read that hospitals can offer short term loans of CGM's but my DSN said she had never even heard of them.

Thanks.
 
I'm very surprised that your DSN has never heard of them, it's not as though they are something new! 😱 She needs to read up a bit more on treatments and aids over the past decade! 😉 It sounds like perhaps you need to be speaking to someone with more knowledge of how to deal with your own particular circumstances.

The only ones I have heard of being funded by the NHS are for children, and then in a limited way. People are able to get them for short periods if they have particular problems that are hard to pin down more conventionally. I would have a word with your consultant about the possibility (and if he/she has never heard of them, then time to find a new one, I think!).

To fall over 6 mmol/l in half an hour is a considerable drop - how long before had you eaten/injected? Does this happen frequently?
 
Hi Northerner,

Thanks for replying.

I usually get up around 7.30 am check my BG and have a cup of tea, my BG was 9 mmol and the last time I had eaten was about 8 pm the night before. To avoid early morning Hypos when I first had my operation I was told to give my Lantus in the morning so on that particular morning I gave my 10 units of Lantus at 8.30 am as usual. (I give my Humalog after I have eaten and carb count.) I then got my breakfast ready and checked my BG again and was shocked to find it was 2.7 mmol! I did another check just to see it wasn't my monitor playing up but it was the same reading. So I drank lucozade and managed somehow to get my breakfast down, and got my BG's up again.

This is the first really low Hypo I have had since coming out of hospital over a year ago, although I had four in hospital when the nurses were in charge of the insulin injections. What worried me was that although my BG was that low I did not shake or experience the usual Hypo symptoms, I just felt a little lightheaded.

I told my DSN about this and she could offer no explanation other than to ask had I got my pens mixed up, but there is no possbility of this I am very methodical and keep records and check and check again to make sure this doesn't happen. There is no way I could have given the wrong insulin, I just wish it was as easy to solve as that. It would be a great help to be able to see via a CGM device just what my blood was doing but looks like that's not possible but I will ask my Consultant next month when I see her. Let's hope she has heard of a CGM or else I will be worried!

Regards Annie.
 
Annie, it may have been the lantus, unlikely as it seems. I have experienced a couple of rapid lows in the past about 30-60 minutes after injecting my lantus, when it couldn't be from my novorapid evening meal insulin (I injected the lantus before bed). However, I would stress that this only happened a couple of times in 4 years. Sometimes the insulin can get into your bloodstream much quicker for no apparent reason, but it is very rare. Sometimes you simply can't find an explanation for some incidents.

Hope it doesn't happen again!
 
Hi Annie
Welcome to the forum.
I know someone who managed to borrow a CGM from her hospital (for a week) on the basis that she's pregnant and needed to see what was going on at night with her BGs - perhaps you could use the fact that you've had a operation - which presumably affects your diabetes - as an argument ?

I personally haven't used them so don't have first hand experience. What I heave heard from users is that it's not a magic bullet - because you still have to do BG testing on your monitor, and you need To calibrate the CGM to your blood glucose monitor. There is also a bit of a delay apparently in that the CGM results are about 15 mins " slower" than the results that appear on the BG monitor. However, having said that, my understanding is that people have found them to be useful if you know how to use them and if your aware of their limitations

I'd say go for it - it's probably better than not having one !
 
Thanks Northerner and Cleo for your replies.

Yes, a CGM looks like the answer but when you look into it I suppose you are better to keep checking yourself and get the reading in real time. I will quiz my Consultant though to see what she thinks.

I was just a bit shocked at the rapid drop in my BG and trying to find a solution to minimise it happening again. It is interesting that you have experienced a similar thing with Lantus, Northerner. The only thing I have been doing differently lately is injecting into my thigh, I have always for the past year or so injected into my stomach but my DSN said try using thigh as well, I suppose I will never find the answer and just have to accept funny things happen sometimes.

I am still relatively new to Diabetes and its comforting to discuss worrying things with people who know.

Thanks again

Annie.
 
Annie, a CGM takes a reading every 5 minutes or so, and as a result it is good for showing upwards or downward trends which can be difficult to spot otherwise, especially when you are sleeping. The good ones also have an alarm for when you are about to drop low. The reason for the delay that Cleo mentioned is because they don't take their information from the blood like a meter does, but from the interstitial fluid.
 
anniehi said:
Thanks Northerner and Cleo for your replies.

Yes, a CGM looks like the answer but when you look into it I suppose you are better to keep checking yourself and get the reading in real time. I will quiz my Consultant though to see what she thinks.

I was just a bit shocked at the rapid drop in my BG and trying to find a solution to minimise it happening again. It is interesting that you have experienced a similar thing with Lantus, Northerner. The only thing I have been doing differently lately is injecting into my thigh, I have always for the past year or so injected into my stomach but my DSN said try using thigh as well, I suppose I will never find the answer and just have to accept funny things happen sometimes.

I am still relatively new to Diabetes and its comforting to discuss worrying things with people who know.

Thanks again

Annie.
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Hi Annie,

My son (15) uses CGM full-time and loves it.🙂Its not about 'real time' as such as its only minutes behind - its about looking for patterns and building up the bigger picture of levels that you dont see with normal BG's.

We use them to change basals and they are great at helping us look at ratio's and because we use the Medtronic VEO it has the ability to turn off insulin if having a hypo during the night. Unless you have used CGM's for at least 6 months it would be difficult to understand how they work. I am really surprised your DSN hasnt heard of them - they are used widely now.

We self-fund and its expensive but worth it in my view. Some companies let you have a trial where you just pay for the use of sensors rather than the transmitter and then just hand it back if you decide against it. It might be worth ringing Medtronic or another company to see what they can offer you. Most teams do have a CGM they can lend out to patients but its not the same system as we use - its something that doesnt show you the data - its only 'read' by the team after you have used it which is good for some people if they have minor changes.

CGM's has the ability to alarm if your levels are dropping or rising so it gives you time to check and deal with it before it gets to that stage.🙂Bev
 
Hi Annie

Good luck with your quest to get CGM funding. It's not easy but it *can* be done with a supportive team, especially if you can demonstrate a clinical need and have a supportive team ready to fight your corner.

Many do choose to self fund if the NHS cannot be convinced. Came across this on Twitter earlier today from a PWD assessing costs over his first year of CGM http://diabetescgmblog.com/2013/09/25/year-1-cgm-sensor-cost-review/

As to your rapid drop... What are your injection sites like? Another member here has had experience of pockets of insulin being 'locked up' in scar tissue/lipos for weeks/months only to splurge into the bloodstream at random times and cause complete chaos. Could that have happened in your case?
 
Thanks for that link Mike, most interesting read. 🙂
 
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