New to pump - difficulty getting level

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Anna1

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Type 1
Hi
I started on the Medtronic 640g about a month ago having had dreadful control for over a year on MDI (last HBA1C 9.7!!) - so far I've managed to get my numbers down into single figures and my CGM is saying my current HBA1C is 8.1. However, I still find some of the issues I had on MDI still exist. I have done lots of basal testing and have found a somewhat stable basal but still find when I eat I have to set a huge temp basal as otherwise my BG can shoot up 2-3 hours after eating especially in the evening. It seems whenever I eat (even if I eat no carbs) my body releases glucose which together with food makes it very difficult to control. On top of that I was hopeful that being on the pump would mean I would not need to eat if I did not want to but have found in the evening when my last bolus was over 5 hours ago my blood sugar will keep going down slowly until I eat something and then it immediately starts to go up. I have even suspended basal delivery for 30 min and it still keeps going down and just keeps going until I eat something! Very frustrating as makes it difficult to sit between 5-7.

The funny thing is even though it's going down when I then do eat something with say 20-25g of carbs and take bolus it can then shoot up to 13 and sit on 13 for 3-4 hours without coming down so then I have to do a temp basal of double of what I had prior to eating and correction boluses on top. I know all this could be hormone related as I am peri-menopausal but as this is not a very researched area of diabetes healthcare team don't seem to know much about it and my diabetic nurse simply says "must be your hormones how strange"

Having struggled now for over a year I'm getting tired of constantly having to either suspend delivery as going low and then temp basal just to get it back down. Hoping it will settle down again at some point as had 10 years of great control previously.

Currently use Medtronic CGM and know I could get smartguard CGM with Medtronic but that is about £70 more a month and self funding CGM is costing me a fortune already.

Can't remember ever being between 6-7 for more then an hour as it just doesnt stabilise and either starts to go up again or keep going down never just sits flat.

Anyone else experienced difficult control on a pump?
 
Sorry to hear how difficult you are finding things @Anna1 :(

I found it took me at least 6 months to get my head around using an insulin pump, and probably 12 months before I really felt I had some strategies that I had tried and tweaked enough to give me fairly predictable results.

Sounds like your peri-menopausal state really is wreaking havoc, in just the way it does with teenagers.

Sounds like you are doing the right things though, in terms of basal testing first to try to reset things. I wonder if some of your other interactions (significant TBRs) are clouding things.

I’m not sure how often you expect to need to adjust your basal, some seem to be able to set it and forget it, but personally if I want *really* good numbers I have to make small ongoing adjustments every week or two.

The fact that you can’t not eat seems basal related to me, so I’d look at rechecking your evening meal slot by fasting-testing it until you are held level without food.

For meal boluses I’m not sure what ratio you are using - maybe that needs adjusting too? But best to get the basal sorted to just hold you level before tinkering with ratios and correction factors. My meal ratios and correction factors rarely change, and if my basal is tweaked they fall back into working well again from seeming massively out before basal tweaks.

Another thing I’m not sure you’ve experimented with is pre-blousing. Usually 10-20 minutes for the insulin to start working. This can help to reduce the rise after meals, which means that the meal dose can work more effectively as it’s not trying to correct BGs in the teens.

Good luck with it, and stick at it - you will get there, but it will take patience and determination.
 
Thanks Mike - really helpful information. Guess I'm having one of those periods where nothing seems to work and frustration takes over. I will keep at it but feel like I've become a different person this past year as constantly have to check my levels and restrict eating to not upset my levels too much especially in the evening. Guess it's just one of those frustrating periods where everything seems to be up and down and hopefully it will all settle down at some point and make life a bit easier. Pre-bolusing is a good idea.

Also not sure CGM is the best for someone like me as you can become a bit obsessed with watching the arrows go up and down and then try and correct or eat depending on what the arrows say so you're probably more aware whats going on whilst on just BG meter you didn't know what was happening in between the tests but everything has positive and negatives.

Thanks again
Anna
 
Anna1 said:
Hi
I started on the Medtronic 640g about a month ago having had dreadful control for over a year on MDI (last HBA1C 9.7!!) - so far I've managed to get my numbers down into single figures and my CGM is saying my current HBA1C is 8.1. However, I still find some of the issues I had on MDI still exist. I have done lots of basal testing and have found a somewhat stable basal but still find when I eat I have to set a huge temp basal as otherwise my BG can shoot up 2-3 hours after eating especially in the evening. It seems whenever I eat (even if I eat no carbs) my body releases glucose which together with food makes it very difficult to control. On top of that I was hopeful that being on the pump would mean I would not need to eat if I did not want to but have found in the evening when my last bolus was over 5 hours ago my blood sugar will keep going down slowly until I eat something and then it immediately starts to go up. I have even suspended basal delivery for 30 min and it still keeps going down and just keeps going until I eat something! Very frustrating as makes it difficult to sit between 5-7.

The funny thing is even though it's going down when I then do eat something with say 20-25g of carbs and take bolus it can then shoot up to 13 and sit on 13 for 3-4 hours without coming down so then I have to do a temp basal of double of what I had prior to eating and correction boluses on top. I know all this could be hormone related as I am peri-menopausal but as this is not a very researched area of diabetes healthcare team don't seem to know much about it and my diabetic nurse simply says "must be your hormones how strange"

Having struggled now for over a year I'm getting tired of constantly having to either suspend delivery as going low and then temp basal just to get it back down. Hoping it will settle down again at some point as had 10 years of great control previously.

Currently use Medtronic CGM and know I could get smartguard CGM with Medtronic but that is about £70 more a month and self funding CGM is costing me a fortune already.

Can't remember ever being between 6-7 for more then an hour as it just doesnt stabilise and either starts to go up again or keep going down never just sits flat.

Anyone else experienced difficult control on a pump?
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Hello Anna1. T1 is a very strange illness at times. Some days you think you have it sorted & then you try to do the same next day & thump. It changes. Every day it can be different. Really good luck 🙂
 
Hi Anna, remember it has only been 1 month so far, give it time! I got my pump in November and I do love it, but I am still having ups and downs, like you. Have you read any books about it? I found "Think Like a Pancreas" by Gary Scheiner very useful. I'm trying to get my post-meal spikes down at the moment too, Scheiner recommends doing a "super-bolus" which is where you give an extra bit of bolus with a meal and then reduce your basal for 3 hours afterwards to add up to the same total insulin over that period, to prevent a hypo. I tried this today and I didn't get a spike, but then I did some gardening so got a hypo at 2 hrs instead! Pre-bolussing by 30 mins also helps as well, I find, and I did some basal testing this week which also helped to iron out some hypos. I think keeping a food and results diary is the main thing, and then you can look back on what worked or not and try something different next time you have that meal or do the same activity. Like you I find non-carb foods still push up my BG, this week I tried a low carb lunch of quinoa with ham and cheese and there was no spike but a massive rise to 12 two hours later that lasted all afternoon, so I guess I'll try adding a couple of units square wave bolus for that kind of thing in future. I already bolus if I eat eggs on their own, and for peanut butter on toast (need more bolus than if I just eat plan toast, but neglibible carbs in the peanut butter?) and also meals where I eat a lot of meat, e.g. a barbecue. Scheiner suggests if you eat a fatty meal eg in a restaurant then do a 150% TBR for 8 hours afterwards, which is quite scary but also seemed to work, so no more morning highs after a meal out the night before! Stick at it and record everything and you will get there.

Have you come across the Freestyle Libre? It's a cheaper alternative to funding the Medtronic CGM, a lot of people on here use them for doing overnight basal tests etc. My CCG has just agreed to fund it in certain cases, so you may be able to get it on the NHS too - it's a bit of a postcode lottery but worth asking.

Hope that helps,

Pigeon
 
Hi Anna
It does sound frustrating. I too find that protein in my evening meal has a large effect on my blood sugar. I also find that eating anything upsets the lovely stable basal rates achieved through basal testing!
I’m surprised that you use temporary basal rates to cover post meal spikes though. Wouldn’t an extended or mutiwave bolus work?
Have you tried doing a little aerobic exercise after your evening meal? It makes a big difference for me.
I hope you manage to find a way to make this work for you.
 
Going for a simple walk after Tea does it for me at times 🙂
 
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