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Information for type 1 and pump

K

Kimbo10

Member
Relationship to Diabetes
Type 1
Hi guys .
Just wondering if anyone on here who has been diagnosed type 1 and on pump therapy still can’t control there sugars ? I’ve been diabetic now 28 yrs and I have been on a pump for 5 yrs , my sugars are so up and down. They are ok then for weeks I can be so unwell with highs and sickness and generally feeling so rubbish . I carb count and use pump for dose set by my care providers . but I was under the impression Omnipod’ 5 was supposed to stop the highs and lows I’ve had this new pump 5 weeks now .. and I am so confused . I have obviously been in contact with them but tbh I have little faith in them now as as I said I’ve had this for many years and never seem to get anywhere. I also the last 6 months have become so hungry litrally could eat anything in sight and be never exsperienced anything like it I’ve never had an appetite till now . And weight I’ve gained weight .. Have any of you had this ? It’s really starting to play on my mental health cos I feel so ruff daily and just want help to feel better .. I just wondered if anyone’s gp consultant has tried any wonder drug for these symptoms cos I am loosing the will to live now ..
thanks
 
Welcome @Kimbo10
Sorry you are currently struggling with your diabetes since adopting a pump.

I cannot control my diabetes nor do I expect to. There are too many things that can affect our BG that controlling diabetes all the time is as likely as controlling a classroom full of 5 year olds all the time.
That said, I feel I do manage my diabetes with my pump.
I do this with a fair amount of tweaking of my pump because my basal requirements vary so much depending upon exercise. stress, food, etc which vary every day. Thankfully, it was made clear to me when I adopted a pump that is just another way to administer insulin and not a silver bullet.
I do not have HCL and, with my varied lifestyle, I am not sure how it would work for me.
I am not clear from your post if you have HCL (and with which CGM) ir whether you "just" have the Omnipod
 
Hi ,
I have the libre 2 + sensor which talks to the Omnipod and is supposed to administer insulin when it hits a certain number that my pump is set at , but I don’t understand why although it says it’s automated and is obviously delivering why I am still getting the highs so I have to do correction dose which I wasn’t aware I’d have too do so as that was the point of it in the first place ? I obviously don’t exspect it to be perfect and I do adjust according to my day ect .. but I have spoke to many people and seen things posted about a weekly injection that they have been prescribed even though they have type 1 and it has done wonders for there sugars and weight ect but I keep seeing these are only available for type 2 .
 
Kimbo10 said:
I was under the impression Omnipod’ 5 was supposed to stop the highs and lows I’ve had this new pump 5 weeks now .. and I am so confused . I have obviously been in contact with them but tbh I have little faith in them now as as I said I’ve had this for many years and never seem to get anywhere.
Click to expand...
Sounds like your expectations may perhaps be unrealistic? Whats your time in range (3.9-10.0) for the last 7/30 days (assume you can get this from your libre).
 
Kimbo10 said:
lucyr… yes 3.9 -10.0

Sensor only in range 19 %
Click to expand...

That’s not good @Kimbo10 :( You need to go through methodically and check all the settings. Where are you putting your pod? Perhaps you’re using a body area with poor or erratic absorption? Or perhaps the cannula on the Omnipod simply doesn’t suit you?

Have you always used an Omnipod?
 
Lucyr said:
Sounds like your expectations may perhaps be unrealistic? Whats your time in range (3.9-10.0) for the last 7/30 days (assume you can get this from your libre).
Click to expand...

Inka said:
That’s not good @Kimbo10 :( You need to go through methodically and check all the settings. Where are you putting your pod? Perhaps you’re using a body area with poor or erratic absorption? Or perhaps the cannula on the Omnipod simply doesn’t suit you?

Have you always used an Omnipod?
Click to expand...
Hi inka .. no I know it isn’t that’s why I am asking for some advise . The pod is on back of my arm near to sensor or they won’t communicate . I have been through all settings ect with both Omnipod and my diabetic team and all is right .. I had Medtronic pump then Omnipod dash and now Omnipod 5 . My previous pumps I wore on my tummy but libre 2 + is only licensed for arm so that’s where I have to put it ‍♀️
 
HCL pumps are great, but they can’t stop all highs and lows. You do still have to put some work in yourself. I don’t know how the Omnipod works, my daughter has T-Slim and that uses a pre-set basal pattern (similar to a non-looping pump) and a couple of other pieces of information on which to base its calculations. If any of those bits of information aren’t quite right then the pump will either not react fast enough or be a bit overzealous in its adjustments, which would then result in your blood sugars being out of range more than they should. And as we know, things change from time to time, so you have to be on top of it making sure that you’ve got everything adjusted the best you possibly can. When my daughter was younger there would be periods of time when it felt like I was almost constantly fiddling with pump settings and never quite getting it right! Now she’s on HCL less fiddling is necessary, but you do still need to keep an eye on things (and she pretty much gets on with it on her own now, I have hardly anything to do with it any more).

What sort of pump training did you have? I notice that you say you use the pump to do the “dose set by your care providers” - how often do you see them to check whether the dose is still correct? These things can need adjusting from time to time, and ideally you should be able to make any adjustments you need yourself rather than having to wait to see someone. Could you ask for more training if you aren’t confident to do this yourself?

I also wonder whether you need to do some basal testing - going for a few hours a day without eating to see if the pump holds you steady, if it doesn’t that usually means that you need to make adjustments somewhere. Pumps are not perfect, but to me it sounds like you haven’t been taught how to make the best of yours, our clinic expects at least 70% time in range if it’s working properly for you, and if it isn’t you need to look for the reasons why. Apologies if you’ve been through all this, but that’s what comes to mind for me.
 
Whilst using closed loop there are still a lot of things that we need to do.

If you had a sensor before switching to the closed loop do you know what your time in range was before you switched to the pump.

I am wondering how tight your carb counting is. The bolus calculator with any pump is dependent on us telling the pump how many carbs we are eating at each meal. Whilst the looping will deal with small errors it will not deal with us forgetting to bolus or being a long way out.

The bolus that is delivered is then dependent on your carb ratios. I think I picked up that these were set by your HCP. Are able to review these and alter them as necessary. If not, it would be worth working with your team on this, as that will make the boluses more accurate.

You mention that you are doing corrections. Are these ones suggested by the loop, or ones that you are adding in in some way. Sorry I am not familiar with the Omnipod’s system although I think the closed loops work in similar ways, they do have their differences.

For me, using the closed loop, there are the following variables that I need to tweak at regular intervals to make the algorithm work for me.
  • Carb ratios ( mine vary through the day)
  • Active insulin time (not the same as the profile for the insulin)
  • Sensitivity factors (used by the p7mp when doing corrections)
  • Target level (I can change this for exercise and also for changes in medication)
I then need to make decisions about
  • Timing of my bolus - they recommend injecting 15 min before you eat, us I find that I need a bigger gap between bolus and eating in the morning. It is a case of trial and improvement.
  • Carb counting for each meal
  • Changing target to match what I am doing.
Pumps do a lot for us but they do not take away all the work. I found it very difficult when I first started looping to let the pump get on with it. I nearly threw the pump out went back to my old once for a month after starting. Then I did a restart, and find that it works well for me.

Work with your team step by Etsy to find out what needs to be changed. The loop should certainly be getting you a higher TIR . With 19% TIR it is no wonder you feel rough. I hope that you can get the help that you need.
I am now able to reach the >70% in target most of the time and it keeps me in the 80s or 90s a lot of the time.
 
Hi thank-you for your comment I have had a pump for over 5 years and I have worked very hard to adjust and carb count ect . As far as I am aware all I am doing is correct . I speak to my diabetic nurse regularly and my consultant and it seems I am a mystery to them , when I was first diagnosed 28 yrs ago I was told I had brital diabetes then just type 1 nothing has ever worked and I have looked in to all the different types .. it has never been well controlled I just feel something is missing in the diagnosis .
 
SB2015 said:
Whilst using closed loop there are still a lot of things that we need to do.

If you had a sensor before switching to the closed loop do you know what your time in range was before you switched to the pump.

I am wondering how tight your carb counting is. The bolus calculator with any pump is dependent on us telling the pump how many carbs we are eating at each meal. Whilst the looping will deal with small errors it will not deal with us forgetting to bolus or being a long way out.

The bolus that is delivered is then dependent on your carb ratios. I think I picked up that these were set by your HCP. Are able to review these and alter them as necessary. If not, it would be worth working with your team on this, as that will make the boluses more accurate.

You mention that you are doing corrections. Are these ones suggested by the loop, or ones that you are adding in in some way. Sorry I am not familiar with the Omnipod’s system although I think the closed loops work in similar ways, they do have their differences.

For me, using the closed loop, there are the following variables that I need to tweak at regular intervals to make the algorithm work for me.
  • Carb ratios ( mine vary through the day)
  • Active insulin time (not the same as the profile for the insulin)
  • Sensitivity factors (used by the p7mp when doing corrections)
  • Target level (I can change this for exercise and also for changes in medication)
I then need to make decisions about
  • Timing of my bolus - they recommend injecting 15 min before you eat, us I find that I need a bigger gap between bolus and eating in the morning. It is a case of trial and improvement.
  • Carb counting for each meal
  • Changing target to match what I am doing.
Pumps do a lot for us but they do not take away all the work. I found it very difficult when I first started looping to let the pump get on with it. I nearly threw the pump out went back to my old once for a month after starting. Then I did a restart, and find that it works well for me.

Work with your team step by Etsy to find out what needs to be changed. The loop should certainly be getting you a higher TIR . With 19% TIR it is no wonder you feel rough. I hope that you can get the help that you need.
I am now able to reach the >70% in target most of the time and it keeps me in the 80s or 90s a lot of the time.
Click to expand...
 
It sounds a similar devise , the correction doses are what the pump offers when it’s very high . Which is all set up on the pod so it’s basically 1 u for every 3 that it’s over but I can do that and it still rising .. I do have a lot of knowledge living with this for all this time but I feel this pump is not what I was told it would do and I feel no one is listening to me in my care team I mean not you lovley people .. it is also supposed to shut of when low and it dosnt so I really don’t know
 
If a correction ratio of 1 unit to 3 mmol isn’t enough then try 1 to 2
If the pump isn’t shutting off when low then that sounds like it might be a fault with the pump itself, contact the pump company and ask them. If they are anything like the pump companies we’ve had dealings with they should hopefully be very helpful.
 
Sally71 said:
If a correction ratio of 1 unit to 3 mmol isn’t enough then try 1 to 2
If the pump isn’t shutting off when low then that sounds like it might be a fault with the pump itself, contact the pump company and ask them. If they are anything like the pump companies we’ve had dealings with they should hopefully be very helpful.
Click to expand...
Oh I have contacted them and they run all tests and have assured me it is totally fine .. and checked all setting ect with care professionals
 
Kimbo10 said:
Hi inka .. no I know it isn’t that’s why I am asking for some advise . The pod is on back of my arm near to sensor or they won’t communicate . I have been through all settings ect with both Omnipod and my diabetic team and all is right .. I had Medtronic pump then Omnipod dash and now Omnipod 5 . My previous pumps I wore on my tummy but libre 2 + is only licensed for arm so that’s where I have to put it ‍♀️
Click to expand...

I was agreeing with you @Kimbo10 🙂 Did the Omnipod Dash work ok for you? I’m trying to work out whether it’s the loop that’s the issue or the Omnipod/arm.
 
Does the pump know you are injecting corrections yourself? I wonder if this may be part of the problem in that you taking action yourself is stopping the pup from learning what your body actually needs and those corrections that you are doing on top of whatever the pump calculates could then drop you low quicker than the pump can shut off.
I think @SB2015 had problems stopping herself from intervening when she first switched to HCL and had to go back to manual mode for a while before trying again.

Which insulin are you using in the pod? Just wondering if it is FIasp and if you are perhaps one of the people who have problems with using it in a pump.

Can you post a photo of a typical day's Libre graph so that we can perhaps see the sort of issues you are having?

Have you considered having a pump break and going back to MDI for a bit?
If you managed better with the Medtronic pump then it may be possible to switch to that system if you feel the Omnipod is not working out for you. As I understand it, because the pods are disposable, you may not be tied into a 4 year contract.

What do your team say about your low TIR? Clearly you are not benefitting from it.

As regards the hunger, I find following a low carb way of eating helps enormously with hunger and cravings. The more carbs I eat the more I want. The less carbs I eat, the less food I eat in general because I simply don't feel like I need to so much and my stomach has shrunk as a result.
The problem with the GLP-1 medications that you inject once a week like Ozempic and Mounjaro are firstly that they only work to supress your appetite as long as you use them, from what I have read and you have to steadily increase the dose. I think there may be an increased risk hypos because it slows down your digestion and can sometimes cause you to vomit. I also have the feeling there may be an increased risk of DKA, but hopefully someone will correct me if I am wrong. I have read that some people can't face eating for a day or two after the injection.
 
My daughter was having issues with dropping low after her evening meal. After a bit of investigation it was found that she was sometimes forgetting to do her bolus before she ate, was doing it during/after eating as soon as she remembered, but in the meantime the pump had detected the blood sugar rise and done a correction dose, so she ended up with two doses of insulin for the same food. So no surprise that she was dropping really. All sorts of little things like this can cause problems, and you don’t always think about it until it happens!
 
Kimbo10 said:
Hi inka .. no I know it isn’t that’s why I am asking for some advise . The pod is on back of my arm near to sensor or they won’t communicate . I have been through all settings ect with both Omnipod and my diabetic team and all is right .. I had Medtronic pump then Omnipod dash and now Omnipod 5 . My previous pumps I wore on my tummy but libre 2 + is only licensed for arm so that’s where I have to put it ‍♀️
Click to expand...

Tbh I don't get great absorption on arms so rarely place my pods there, maybe after many years of injections not to sure.

When using Libre I used different sites other than arms, so stomach & chest areas & got great accuracy using these sites, if you look on likes of YouTube you'll see that many users use alternative sites successfully. Even now using Dexcom G6 use my sides stomach & chest areas with no issues at all, regardless if sensor & pod is on opposite sides.

Might be worth asking your diabetes team if you should try alternative sites if you had better absorption there with Medtronic pump, infusion sites just like injection sites can easily become overused leading to erratic insulin absorption, been there myself more than once in my lifetime with type 1.

Think if things don't improve switch back to previous pump if your TIR was a lot better than now, Omnipod 5 if set up correctly should keep your bg in range a great deal higher than 19%, that TIR should sound alarm bells to your team that something isn't working right.
 
Thank you I was told I could only use sensor on arm and pod needed to be near as I had sensor on arm and pod on tummy and it wouldn’t register . I hate wearing pod on the arm so when I change my sensor if I can out it on my tummy I shall move both to that site as I’ve always worn pump there . Didn’t even think of doing that thank you
 
Libre is only authorised for use on your arm, but people do successfully use it on other parts of the body. (@nonethewiser uses Dexcom I believe, which can be used on other parts of the body) The things to consider are that Abbott won't guarantee it's use on other sites and you might need to finger prick for driving because Libre is being used in a non-approved site. It might be worth experimenting though when you are getting such poor results though.
 
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