Continuous Glucose Monitoring- help!

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Lizzzie

Lizzzie

Well-Known Member
Relationship to Diabetes
Type 1
hi. If this is in the wrong place please do move it!

I have a pump and CGM that talks to my phone. At first I was amazed by this technology - on the nhs and everything - but since I’ve had it my glucose seems awful. it’s really hard not to overcorrect, so I have this jagged path (hypo. Treat. Glucose goes up too high, alarm goes off, take insulin. Glucose goes down too low. Eat. Glucose Goes up too high.....). I’m getting fat for the first time ever and seem to eat all day long trying to sort it. Anyone any advice / know any recourses I can look at? I took my problems into clinic and they said I was doing really well and I now don’t have an appointment for ten weeks!!!! But feel incredibly out of control
 
Hi @Lizzzie, nice to hear from you again 🙂 Sorry to hear about the roller-coaster you are experiencing though :( We have a few members who use alarming(!) CGMs, so hopefully they will come along to advise soon 🙂 At what levels do you have the alarms set? I have used the Freestyle Libre and although that doesn't have an alarm I do a lot of tests when wearing it. I wouldn't normally correct below 12 mmol/l. I'd also treat lows conservatively e.g. a 3.8 mmol/l with a downward trend might only get one or two jelly babies. Is there anything you might change in your diet and dosing routine that might help avoid the highs and lows? I have worked out that I need to inject 45 mins before eating breakfast to avoid highs, 30 mins before lunch and 5-10 mins before evening meal - the timing of the doses has really helped me to smooth the peaks and troughs and the Libre helped me to do this.
 
Sorry don't have much time but these are my initial thoughts:

1. Try doing some basal testing, if that's out of whack then that might explain what's causing the hypos;
2. Perhaps your correction factor needs a tweak, if you always drop low after correcting;
3. I think it was @trophywench who posted a brilliant tip on here, that if you are on a yoyo bouncing from high to low and back again, just give HALF the recommended correction when you are high. This might not bring you back all the way in range but might at least prevent you from dropping low again and then you can start to get some stability back. I tried it when my daughter was having a similar problem, and it works!
 
Hi, I do not pump, injection only.
I have used free style libre with the Bluetooth dongle allowing cgm through mobile phone using 'xdrip+'. I found that the alarm allows me to catch every hypo event, but has also pushed me to over react to the highs, because the alarm would keeping going off every 10 minutes. The answer for me was to set the high alert to a higher value (15) and to treat the hypos with the lowest amount of carbs. Also, I try to limit what I have available to treat hypos. If I have a 2 finger KitKat in my pocket that is fuel to feed the hypo, if I had a 4 finger KitKat in my pocket I might be tempted to eat the lot.

As you pump you should be able to fine tune your dosage.
 
Hi Lizzzie

Do contact your DSN again sooner and ask for help as you need to feel as safe and as in control as you possibly can.
Agree with all that's been said so far-

Have you done a basal test to make sure your background insulin rates are right?. Having a cgm makes this easier to do.
Check that your carb rations are right and also try tweaking when you bolus for food- do you pre bolus at all to give your insulin a bit of a head start before the food hits?
Do have a look at what thresholds you've set for warning alarms and ask you DSN for advice with tweaking them.My DSN and the Medtronic rep helped me to adjust mine as I was going crazy with relentless alarms.

From my experience of cgm it is very easy to start to feel as though you have to react to every alarm - which is most definitely not the case! Often my cgm alarms with rapid glucose rise when my bg is only rising gradually due to food and insulin being a bit out of sync.The majority of the alarms I just acknowledge and leave the bolus I've had to work and usually (hopefully) end up back where I should be without any further correction. Obviously react to the rapid drops heading for hypo. Once you start stacking insulin by correcting with active insulin still working things can get out of control with hypos and rebound hypers. Try and sort the basics of the pump settings, basal/bolus/correction factor and see if that helps iron out some of the problems you're having. Sometimes I just take a step back from watching my cgm too closely and if the basal rates are set correctly there shouldn't be too many occasions when I need to correct.
 
Hi @Lizzzie great to hear from you again, and brilliant news that you have some tech that can help you improve your quality of life.

You are absolutely not the first though, that has struggled with the gluco-coaster as a result of over-reactions to CGM data. I've been there and it's infuriating!!

The brilliant thing is that you have identified the issue and can see what is happening.

Some great suggestions made so far, but the most powerful one I think was in your own post. You can see that you are over-reacting to rising CGM alarms and then crashing into hypo.

A couple of thoughts:

For a week (or however long you can stand) either turn off your high alarms, reset to as high as they will go or commit to NOT correcting a high alarm on any day in which you've had a hypo*. This will be hard. And you may be uncomfortable doing it - BUT at the moment you are not able to see what the effect of the insulin you already have onboard is having. Just that you are overdoing the correction then crashing. If you can 'ride it out' a few times you may find that the CGM trace often tops out soon after the alarm and then descends to put you mid-range.

* Research shows that any day on which you have a hypo you are MUCH more likely to have another one. So even if your correction ratios are bang-on usually... on a day you've already had a hypo they may well be too much.

The important thing is to get off the gluco-coaster.

When I am wearing a sensor, I check carefully to see what insulin is still active before correcting. Remember that it will be active for something like 4-5 hours (even though it sometimes *seems* to be finished after about 2!) so it's important to set the DIA on your pump to long enough that you get a good guide to unused insulin to inform your decisions.

The other thing that really helped me when I was in your position was aiming corrections ONLY to get me to 9mmol/L - especially if I was considering adding insulin when I had any IOB at all.

I wrote a blog post about some CGM realisations I'd had during last year. Not sure if the go-karting analogy will seem familiar?: http://www.everydayupsanddowns.co.uk/2017/12/cgm-diabetes-time-travel-and-lessons.html
 
I have just had a go with that tech. I have been T1 for 52yr & my Hboa1c is 52 . Medtronic 640G. As others have said your pump needs to be set up for you. Good luck 🙂
 
Am I right in thinking that this combination turns off the basal insulin if it detects a hypo? If so then I can see how that would lead to rebound highs. I have never really understood why I would want to do that, since the basal I am getting now impacts my levels over the next four hours. But then my basal doses are very low so perhaps it’s different if they are higher.
 
Radders said:
Am I right in thinking that this combination turns off the basal insulin if it detects a hypo? If so then I can see how that would lead to rebound highs. I have never really understood why I would want to do that, since the basal I am getting now impacts my levels over the next four hours. But then my basal doses are very low so perhaps it’s different if they are higher.
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I was getting lots of night time hypos & the Medtronic 640 indeed turns the pump off & does not give you insulin when it detects a hypo. I can see the figures of how many night hypos.
 
Radders said:
Am I right in thinking that this combination turns off the basal insulin if it detects a hypo? If so then I can see how that would lead to rebound highs. I have never really understood why I would want to do that, since the basal I am getting now impacts my levels over the next four hours. But then my basal doses are very low so perhaps it’s different if they are higher.
Click to expand...

My experience is that when my basal is set right I don't get rebound highs from Smartguard. The basal that ends up getting 'removed' is some that I don't need that day for whatever reason (level of activity... slight day-to-day variation or whatever).

If my basal needs have changed I can see either increased hypos (Smartguard can't catch them all if basal is out) or afer Smartguard I end up higher than I'd like. When basal is set OK I tend to see the CGM trace gently level out between 4-5 and settle somewhere in the 6-7s.

All depends on what you have your Smartguard set at, of course!
 
It is what you have it set at. I was not in charge of that. The lowest I have been & been aware is 0.8. Thought I would have to do something ! 😱
 
HOBIE said:
It is what you have it set at. I was not in charge of that. The lowest I have been & been aware is 0.8. Thought I would have to do something ! 😱
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Surely you can program the settings yourself?
 
Radders said:
Surely you can program the settings yourself?
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Yes. You can set it however you like and update settings as needed, though it’s good to get HCP input especially to begin with to get your head around what the levels mean, and what levels are set around those for start and stop of the glucose suspend/alarms etc.
 
My DSN set them & told me at the time to leave them. So I behaved Radders. :D
 
Ooh you are too well behaved, I'd want to understand it all and then fiddle! For the first year after my daughter was diagnosed I didn't change anything without seeing the nurse first, fair enough it was all new; then I said to her that I wanted to set up a second basal pattern for non-school days as it was obvious the insulin requirements were different when daughter wasn't at school, and she said "OK, you know how to do it!" 😱😱😱 How scary was that, although of course I did it and haven't looked back. We don't have the Medtronic pump so no smartguard, but I would have thought that is the same, you can learn!
 
When someone who knows more than me tells me to not adjust. If a Headmaster told you to sit in Assembly what would you or your daughter do ?
 
I'm sure your DSN didn't mean that you can never ever change the settings, as we all know diabetes doesn't stay the same for long, and you are the person who knows most about your diabetes! But if you think those settings are still working for you then that's great, no reason to change them anyway. I just wouldn't be happy with "never change that", I'd want to know why it never needs changing when everything else does from time to time. But that's just me, some people are happy to just follow instructions and do this, do that, without questioning. I like to understand why those particular instructions are correct. It doesn't mean I'm accusing the person giving the instructions of being wrong, I just want to understand as much as I can myself. Particularly where my daughter's diabetes is concerned.

My daughter would do anything anyone in authority told her... Unless she was having a hypo, in which case she would do whatever was necessary to sort that out first, as staying alive is slightly more important! No point being a good girl and sitting listening to the headmaster for ages if you are going to fall unconscious while doing it!
 
Sally71 said:
I'm sure your DSN didn't mean that you can never ever change the settings, as we all know diabetes doesn't stay the same for long, and you are the person who knows most about your diabetes! But if you think those settings are still working for you then that's great, no reason to change them anyway. I just wouldn't be happy with "never change that", I'd want to know why it never needs changing when everything else does from time to time. But that's just me, some people are happy to just follow instructions and do this, do that, without questioning. I like to understand why those particular instructions are correct. It doesn't mean I'm accusing the person giving the instructions of being wrong, I just want to understand as much as I can myself. Particularly where my daughter's diabetes is concerned.

My daughter would do anything anyone in authority told her... Unless she was having a hypo, in which case she would do whatever was necessary to sort that out first, as staying alive is slightly more important! No point being a good girl and sitting listening to the headmaster for ages if you are going to fall unconscious while doing it!
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I'm with you Sally. I decided my levels, tried to undersrand how they worked and what implications were for BG management, saw how they worked in practice and decided whether they were right for me or needed review.

I don't think I would like it if I didn't feel 'allowed' to change a setting on my own pump - but everyone's different!
 
When someone who knows more than me tells me to not adjust. If a Headmaster told you to sit in Assembly what would you or your daughter do ? Everyone is different. I have been T1 since being 3yrs old. I have excellent NHS & Medtronic staff looking after me. I respect them totally & if I am told to do it one way. Guess what ? They see lots of patient every week & yes I do things my way at times but in my book I do as I am told. Thank you 1966 when diagnosed tells you something still full time employed 🙂
 
Good for you if you are happy just being told what to do. I'm not, I prefer to be a bit more proactive in my daughter's diabetes management. We also have an excellent medical team, and I don't know what I'd have done without them in the beginning; but I don't want to be totally reliant on them for every little thing and they think it's great that we are now pretty much self sufficient and they don't need to be involved much any more, because they can spend more time with people who really do need their help, e.g. Those who haven't been diagnosed as long.

We are all just trying to do our best with a very complicated medical condition, and there are many ways it can be done. You carry on doing what works for you and I'll carry on doing what works for us. If we aren't doing exactly the same thing then it really doesn't matter does it. I've already told you what my daughter would do if told by the headmaster to sit in assembly, and I don't see what being employed your whole life has got to do with anything, so I will now come off this thread as I have no interest in arguing and just going round in circles trying to score points is just a childish waste of time. I've said everything I wanted to say here and can't add any more.
 
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