CGM Insanity

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Purple

Purple

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Relationship to Diabetes
Type 1
Okay so I was put on a CGM which works with my pump yesterday morning and all was well with the world until mid afternoon. The sensor readings were quite accurate and married up with my BG readings so was quite chuffed.

At about 3pm it told me I was dropping quite quickly with a reading of 3.7 so I treated it since it seemed I was about to have a hypo. A few minutes later it then said I was 2.9 and it suspended the basal. I tested, and my BG was 8.3! 😡 I waited about ten mins and tested again and it was 12.4 so I had to correct because I had treated a hypo that I didn't have!

This thing is royally doing my head in as it then took me ages to get it back down to single figures again and the sensor couldn't decide if I was high or low with readings between 20.7 and 2.4 all night bleeping away and each time I test I'm between 7 and 5.

Anyway I've decided that I trust my meter over the sensor and since I haven't really slept that well I'm a grumpy old man today and I can't get hold of my DSN so I've turned it off to save what little sanity I have from being bleeped to death!

Martin is not a happy bunny today!
 
Hi Martin, although I love the concept of CGM technology the problem is - as you've discovered - the results cannot be relied upon. I'm surprised they didn't tell you that when you got hooked up to it?!

How long do you have the CGM for?
 
shiv said:
Hi Martin, although I love the concept of CGM technology the problem is - as you've discovered - the results cannot be relied upon. I'm surprised they didn't tell you that when you got hooked up to it?!

How long do you have the CGM for?
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Hi Shiv, I was supposed to keep it on until Friday morning, but after last night and speaking with a DSN I am taking it off now. Not fun! I could have dealt with the lack of reliability if it didn't keep bleeping at me every 5 mins telling me I'm hypo when I'm blatantly not!

I confess I should have tested before I treated yesterday. More fool me for relying on it to be accurate!
 
I got annoyed with the alarms when I had one on for a few days. I appreciate if I were wearing it full time I would probably...well, appreciate those alarms, but it would beep at me constantly so I ended up switching the alarms off!
 
Hiya Martin,

Im impressed you have managed to get on with it as much as you have- I hear for some they are a nightmare. I have always wanted to have a shot at it, Im on the veo and was told from the start I wil never be funded for sensors. Ho-hum.

I know that some people here (I think mainly parents) love the CGM facility. I would definately suggest that you should talk to Adrienne, as rumour has it- what she doesnt know about sensors isnt worth knowing!

Good luck with it. I admire your patience this far. I would have cracked 30 mins in 😉
 
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Sugarbum said:
Hiya Martin,

Im impressed you have managed to get on with it as much as you have- I hear for some they are a nightmare. I have always wanted to have a shot at it, Im on the veo and was told fromt he start I wil never be funded for sensors. Ho-hum.

I know that some peope here (I think mainly parents) love the CGM facility. I would definately suggest that you should talk to Adrienne, as rumour has it- what she doesnt know about sensors isnt worth knowing!

Good luck with it. I admire your patience this far. I would have cracked 30 mins in 😉
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I'm afraid I caved and it has beeped its last beep! When I took it out the bit that looks like a canula was coated in blood so I'm wondering if thats why it was fluctuating (spelling) so much?! I think I will be tempted to try again if they'll let me but I would definately not want to do it on a school night! I'm dead on my feet again today! Still could be worse I could be on lates...
 
You should never trust the sensor over the finger prick - didnt your team tell you this? The use of sensors is an art and you need more than a few days to 'understand' how they work.

A lot of effort goes into the use of sensors and it sounds to me as if your team hasnt given you the proper training. Callibration is the first thing that you need to understand as you should only do this when things are 'stable' (i.e. times when you havent eaten for 4 hours or in the middle of the night when there isnt any active still working). You shouldnt callibrate when on a dual wave as this can mess with the numbers.

You have to leave the sensor in for at least 3 or 4 hours to get it 'wet' so it can have a chance of giving an accurate first reading. You need to drink lots of water just before and just after fitting a sensor.

There are quite a few little 'tricks' that would help you to understand the workings of sensor use and this will only come with trial and error. Giving you a sensor and sending you on your way is a little bit like giving a person on injections a pump and telling them to get on with it and read the manual - it doesnt work because you need a lot of input and help in the beginning. We have used sensors for the best part of a year now and we are still learning - so it seems odd to me that your team expected you to understand and use a sensor in such a very short space of time.

The blood on the sensor is very normal - this is just the fluid that mixes with blood. Its a pity you have taken it out as normally a sensor that starts off bad usually ends up being very accurate indeed.

I put a sensor in Alex last night and gave it 2 hours warm up time and he was 9.6 finger prick at 11pm and the sensor read 9.5 (bit high due to having a set change) - so you can get very close to the 'real' time level - but it takes a bit of practice.

Dont let this put you off - if you are offered another one - come on here if you have any questions and hopefully your questions will be answered.🙂Bev
 
Standard practice at my clinic is to offer a CGM to women planning pregnancy, and to anyone having particularly difficult problems with control.

Given that I will be planning pregnancy in the next few years, I had high hopes for a CGM. Am now a bit put off! Based on your experiences, Martin, it seems to completely defeat the purpose.

Bev - do you find when you callibrate and allow the CGM time to "settle in" its results are pretty accurate?
 
bev said:
so it seems odd to me that your team expected you to understand and use a sensor in such a very short space of time
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I don't think it's all that odd to be honest - with my team, they put it in, told me I'd have to calibrate it as and when the CGM told me to, and left me to get on with it. A few hours later it went offline and I had to work out myself how to recalibrate it as my team were hopeless.

Again with the pump - I was hooked up to it, shown how to prime it and to give a bolus, and left to get on with it. My DSN knows I know a fair bit about pumping already, but even so - I was in there for probably an hour at most when she briefly ran over everything. I haven't heard from her since the hook up either. Thankfully I have been able to work out how to manage any issues that have come up.
 
It was very much case of turn up, have sensor fitted, told to calibrate when it asks and come back on Friday. The main issue I had with it was the fact that it kept me up all night with both high and low alerts. I've had a stand alone CGM before I went on the pump and no issues. Having said that, it didn't display any results and only beeped when it wanted a calibration reading.

Bev, if I do go on one again I'll definitely be out for advice. Taking it out was not an easy choice as I really wanted to see the results and now I feel like I've wasted that chance and I know these things are not cheap!
 
shiv said:
I don't think it's all that odd to be honest - with my team, they put it in, told me I'd have to calibrate it as and when the CGM told me to, and left me to get on with it. A few hours later it went offline and I had to work out myself how to recalibrate it as my team were hopeless.

Again with the pump - I was hooked up to it, shown how to prime it and to give a bolus, and left to get on with it. My DSN knows I know a fair bit about pumping already, but even so - I was in there for probably an hour at most when she briefly ran over everything. I haven't heard from her since the hook up either. Thankfully I have been able to work out how to manage any issues that have come up.
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Shiv, I think your right about the help and information people get - this is what is wrong in my view. I learnt most of what I know now from the childrens list and from Adrienne - my team didnt really help much at all. But I do think that teams should be monitoring whats going on with new patients. I met a family at the weekend who have been pumping for 6 months now and still have no idea what they are doing and the child is wetting the bed most nights due to high levels - all this can be avoided if they had a good team who had gone through it all with them from day 1.🙂

Purpleshadez, if you have another sensor fitted - please come on here for any help you need. I am NOT an expert by any stretch of the imagination - but Adrienne is and what she doesnt know about sensors isnt worth knowing.🙂I am sure we can get you up and running with another sensor as long as you dont take it out! lol.🙂Bev
 
Oh deary deary me. Sensors - where do I start.

I so so so wish you had not taken it out. We could have talked you through this.

A bit of sensor info first :

They are not accurately spot on for lots of people, only a few of those lucky ones. For the rest of us we use them for trends and to tweak basals and ratios and to use the arrows up and down to see when dropping fast or going up fast but you always do a finger test to confirm it.

They are set into intistitial blood which is mixed with intistitial fluid so it is unlike the capillary blood from finger tips which is the more exact reading. It is said that the intistitial blood readings are about 15 minutes behind finger readings. Some people find them behind, infront or spot on at different times of the day.

To totally understand how a sensor works for you, you need to persevere and have one after the other for a month or more even. It took me 4 sensors on the trott to work out how it would benefit Jessica and me. I had spent a while using one a month on my daughter and chasing alarms and not knowing what the hell was going on. If you had left it on and answered the alarms by testing and dealing with levels by testing and treating hypos and just got through the week, then you could have let us have the download readings and it is amazing what you can do with these downloaded readings. Even if they are not spot on, which is what you were finding, the trends are there even if you think they are not.

The sensor only takes readings from the tip of it. In the new year (hopefully January) there are new sensors coming out, which go straight in like the quick sets and the whole of the bit in you takes readings not just the tip. This is to make them more accurate. Afterall they can't have this closed loop system if they don't have accurate sensors can they?

Anyway I could go on and on. There are lots of tips on what to do and what not to do and I'll happily think of some if anyone needs any specific ones, I don't know them all of course 🙂 (even though Bev seems to think I do 😉)

I also think that sometimes these nurses put in a sensor and they put it in at too much of an angle or not enough of one. It takes time to get this right and unless they are always shoving them in people you can make mistakes.

It will take the sensor a good 12 hours to settle down and into what it is supposed to be doing hence your hypo alarm which yes, you are right, you should have tested. You then sent it into a tail spin as you went up and then down and up and down and the sensor can't keep up like that. It will always be chasing you. You need to let it settle and do what it says. You also need to calibrate at good times as well.

Hope that helps a bit.
 
Hi Adrienne,

Thanks for taking the time to reply, I am grateful!

I have spoken to my DSN (the one who fitted it) and she has told me to come in next Tuesday at 9:45am and we are going to try again.

From comments so far, am I correct in thinking that I would be better not having breakfast before having the sensor fitted and drinking plenty of water, as Bev suggested, both before and after?

I'm off work next week thankfully so one less thing to worry about...
 
purpleshadez said:
Hi Adrienne,

Thanks for taking the time to reply, I am grateful!

I have spoken to my DSN (the one who fitted it) and she has told me to come in next Tuesday at 9:45am and we are going to try again.

From comments so far, am I correct in thinking that I would be better not having breakfast before having the sensor fitted and drinking plenty of water, as Bev suggested, both before and after?

I'm off work next week thankfully so one less thing to worry about...
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Great news. You can have breakfast. What I would suggest is to have the sensor fitted - but dont start 'new sensor' for at least 2 hours. This gives the sensor time to get 'wet' and settle in. Yes drink water both before and after having it fitted as this helps.

I personally dont fit the transmittor for at least half an hour as this seems to help the sensor to not get confused! But thats up to you.

When you do your first callibration, I would recommend doing it at a 'safe' time - so not when you have just eaten or just had a hypo etc. Adrienne will be much better at advising you as she has years of experience on me - these are just my little tricks that seem to make using a sensor easier.🙂Bev
 
bev said:
Great news. You can have breakfast. What I would suggest is to have the sensor fitted - but dont start 'new sensor' for at least 2 hours. This gives the sensor time to get 'wet' and settle in. Yes drink water both before and after having it fitted as this helps.

I personally dont fit the transmittor for at least half an hour as this seems to help the sensor to not get confused! But thats up to you.

When you do your first callibration, I would recommend doing it at a 'safe' time - so not when you have just eaten or just had a hypo etc. Adrienne will be much better at advising you as she has years of experience on me - these are just my little tricks that seem to make using a sensor easier.🙂Bev
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Excellent news. I'm off out now but know this is here and will reply when I have a bit more time. If I do happen to forget please could someone email me or get Bev to give me a text or call. Thanks. x 🙂
 
Not amused!

I spent an hour waiting to see my DSN today to be informed that they couldn't put me on a CGM today as they didn't have any of the bio sensors as no one bothered to order them.

Not bothered too much about not going on CGM just yet but to be kept waiting for an hour when she had seen me arrive is a tand annoying!!!
 
purpleshadez said:
Not amused!

I spent an hour waiting to see my DSN today to be informed that they couldn't put me on a CGM today as they didn't have any of the bio sensors as no one bothered to order them.

Not bothered too much about not going on CGM just yet but to be kept waiting for an hour when she had seen me arrive is a tand annoying!!!
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That is disgusting, I would have been furious. 😡
 
Hmm yes a little annoying, sounds like they only thought to look in the box when they realised what you were waiting to see them for.

A question about the children on pumps with CGMs: I believe my clinic only offers them as an option on the NHS for young children, which I think is quite common practice for pro-pump clinics and perfectly understandable. I am just interested to know what happens (in general) with such a child when they reach the age at which they would not qualify for the CGM and when their current pump needs replacing? Do you know if they could expect to maintain the support for a CGM or whether they would then be expected to just use a pump with a standard BG monitor? I am quite happy with the control this second option provides me. I am just interested because I imagine the cutover age is in the teens when, as we know, maintaining the youngster's dedication towards their diabetic control can be difficult and also the onset of adolesense makes matters more difficult anyway so taking away the benefit of having a CGM at this point could only add to these issues.
 
rossoneri said:
Hmm yes a little annoying, sounds like they only thought to look in the box when they realised what you were waiting to see them for.

A question about the children on pumps with CGMs: I believe my clinic only offers them as an option on the NHS for young children, which I think is quite common practice for pro-pump clinics and perfectly understandable. I am just interested to know what happens (in general) with such a child when they reach the age at which they would not qualify for the CGM and when their current pump needs replacing? Do you know if they could expect to maintain the support for a CGM or whether they would then be expected to just use a pump with a standard BG monitor? I am quite happy with the control this second option provides me. I am just interested because I imagine the cutover age is in the teens when, as we know, maintaining the youngster's dedication towards their diabetic control can be difficult and also the onset of adolesense makes matters more difficult anyway so taking away the benefit of having a CGM at this point could only add to these issues.
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No idea. Pumping seems to be a post code lottery as it is but then trying to get the attached CGMS is sometimes even harder. We are fully funding for full time sensors. Let them try and take them away from us !!!!!

There are many clinics in the UK where it is opposite to yours, where the adults are put on pumps but not the children which whilst I believe everyone should be offered a pump it seems ridiculous some are not putting the kids on pumps as it is not helping the future health of the kids and also their budgets !!
 
As technology moves forward I would think that most pumps will have built-in CGMS - but its hard to know what will happen regarding funding etc.🙂Bev
 
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