New to pumping, finding it a pain!

[ChrisWoodward]

Hi all,

Got given an insulin pump last week but ever since I have had it my BG has been even more unpredictable.

I know that it takes a little while to setup and I know all the best practise house keeping for it like how not to get air bubbles and best place for the infusion sites etc but I'm not finding it to be a benefit at all, it seems that my BG readings are all over the place keep waking up with extreme highs 25+ the carb ratio I was using before now seems completely wrong sometimes and fine other times like lunch today for example:

Pre Meal: 6.3 68g of carbs 3.4u of insulin 1:20 ratio
Post Meal: 16.4 :-S

Yesterdays lunch went fine and I ate exactly the same thing.

How long does it take to set one of these up? In your opinion is it even worth having if my pens gave me more stable BG readings?

I was given a pump because my last Hba1c was 66 or 8.2%, this was put down to dawn phenomenon because a normal night for me is like this:

Bedtime 5-6
3am 7-8
7am 25+

but the pump isnt helping this at all and I dont see how it could because sometimes my sugar levels in the morning are fine so we cant increase my basal rates to try to cope with it because otherwise I could run in to serious problems on the 2 or 3 days a month that it doesnt happen to me.

 

[shedges]

Hi Chris,

Sounds like a lot of similar frustrations to a lot of people on a pump. Give it 5-6 weeks to really settle down. And don't look to blame the pump, i.e. I can eat the same meal two days running but external factors can affect how my body deals with the insulin/carbs.... exercise and alcohol over the last couple of days, stress, dehydration... and probably lots of other things.

It's a long process to tune it to your basal requirements and then get the bolus dosing correct. Your ratio may be different after going onto the pump - mine was 10g per 1 unit of insulin but went to 12g on the pump - 20% difference!

Varying basal rates is one of the biggest advantages of the pump over mdi - and temporary basals for exercise or sick days are also really handy.

There's so much to know; I consider I'm still learning, 3 years in! Don't stress, keep in contact with your nurse and trust that things will work out in a few weeks. Then you won't look back.

 

[iHs]

Hi

If this was me, I would increase the carb ratio at breakfast so that my mid morning levels were ok......so instead of 1 to 20, try 1 to 10 and then hopefully yr bg will be a bit lower. Trial and error is key to everything and loads of bg testing.....but we all get there in the end and you will to. Sometimes, during the night my bg decides that its going to change so I wait for 2 days to make sure that its not flash in the pan stuff but if the same thing keeps happening, then on 3rd day, I do some changes to the basal and use trial and error again to get the settings correct.
Pumps are very demanding and if the settings are not correct for whatever reason, then bg till be tish until we pay some attention....

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[ChrisWoodward]

Hi

If this was me, I would increase the carb ratio at breakfast so that my mid morning levels were ok......so instead of 1 to 20, try 1 to 10 and then hopefully yr bg will be a bit lower. Trial and error is key to everything and loads of bg testing.....but we all get there in the end and you will to. Sometimes, during the night my bg decides that its going to change so I wait for 2 days to make sure that its not flash in the pan stuff but if the same thing keeps happening, then on 3rd day, I do some changes to the basal and use trial and error again to get the settings correct.
Pumps are very demanding and if the settings are not correct for whatever reason, then bg till be tish until we pay some attention....

Sent from the Diabetes Forum App

I take a corrective dose every morning when I wake up so that I can keep my carb ratio the same because on the odd occasion that I was up and my BG is fine the 1:20 ratio works a-ok.

 

[ChrisWoodward]

Hi Chris,

Sounds like a lot of similar frustrations to a lot of people on a pump. Give it 5-6 weeks to really settle down. And don't look to blame the pump, i.e. I can eat the same meal two days running but external factors can affect how my body deals with the insulin/carbs.... exercise and alcohol over the last couple of days, stress, dehydration... and probably lots of other things.

It's a long process to tune it to your basal requirements and then get the bolus dosing correct. Your ratio may be different after going onto the pump - mine was 10g per 1 unit of insulin but went to 12g on the pump - 20% difference!

Varying basal rates is one of the biggest advantages of the pump over mdi - and temporary basals for exercise or sick days are also really handy.

There's so much to know; I consider I'm still learning, 3 years in! Don't stress, keep in contact with your nurse and trust that things will work out in a few weeks. Then you won't look back.

Thanks for the advice, I know a fair amount because I have been carb counting for about the last 5 years, obviously I know it will take a little while I suppose I am just frustrated, particularly with this dawn penomenon my poor girlfirend has had her head bitten off first thing in the morning for no reason at all, 2 hours later when my BG is fine have to go back and grovel. Im just fed up of feeling like a mess because of these fluctuations.

 

[iHs]

Although its a complete PITA getting up in the night, testing bg....its the only way to get the basals correct so that when you get up when you do, you wont keep needing to do a correction. I found that writing everything down in a pump bg diary enabled me to slowly get my bg levels to a level I was happy with. Animas and Accu chek do pump bg diaries and you can write yr correction doses, bg levels, basal rates, carb eaten, bolus, TBR, and by studying 'form', you can work out what needs to be done.
Its possible that either yr breakfast carb ratio is not correct or yr morning basal rates need adjusting. Have you done a bg test 1.30hrs after eating the morning carb with the 1 to 20 ratio to see how high you are going?

On mdi my ratios were 1 to 7 but when starting on the pump my starting ratios were 1 to 20.
I came home and chatted to my friend who had a Veo about these ratios and told her that I gave myself 1 unit of insulin but only ate 10g as didnt think that the ratio was going to deliver enough insulin. I was right...even using 1 to 10 wasn't enough insulin and went high. Friend killed themselves laughing and I said I was going to adjust the settings to 1 to 8, which worked.
It does take time, patience etc to get the settings correct so get out the pump manual and look up basal rate adjusting and adjusting the carb bolus.



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[Beth_Robinson]

It settles down I promise! Before pump my Hba1cs were 10/110, not 7/8

Notmally the main change is a change in ratios (mine have gone from things like 1:20 to 1:7 for carbs)

something that's really helped me is carb free days.. Just don't eat anything with carbs in all day (ie just meat, eggs, cheese, some fruit, some veg etc) This will let you know whether ornot your background dosage is right, If your bs stays good all day, you know know it's your carb ratio that needs to be adjusted. If it doesn't, alter your background Hope this helps, it will get better, promise!

 

[JacHibbert]

Hiya Chris

I started on my pump around 18 months ago, and it probably took the best part of 6 months to get the readings somewhere near what I wanted. I started off with one basal rate over 24 hours but am currently on 9 different ones. It's a lot of hard work but I wouldn't be without mine although I've had days when I just want to rip it off. I did lots of testing (still do) - sometimes 15 per day so I could work out what was going on.
Completely agree with Beth carb free meals or no food - I only managed no breakfast. My bolus rates are also different for each meal which came to light through carb free.
Love the freedom the pump has given me and would never go back to my pens. Keep going with your pump - diabetes sets us all challenges. We just need to decide to overcome them. Good luck.
Jac

 

[DunePlodder]

"I was given a pump because my last Hba1c was 66 or 8.2%, this was put down to dawn phenomenon because a normal night for me is like this:

Bedtime 5-6
3am 7-8
7am 25+"

I can't help feeling that in the short term a CGM would be more useful than a pump in sorting this problem out. It would also help in fine tuning the pump set up.
Surely it's time every Type 1 had the option of a CGM if only for a week or so?

 

[ChrisWoodward]

Thanks for all the responses everyone, I didnt explain myself very well though I dont think.

My carb ratio in the morning is fine, these highs are before I eat breakfast, my pre and post meal BG's are fine in the morning after my corrective dose has brought down my BG.

I actually have had a CGM on in the past which is what first showed this dawn phenomenon, the reason why it cannot be treated is out of the 14 days I had it on I got dawn phenomenon 10 out of the 14 days but the other days were fine so increasing my basal further over night is not possible because it would cause me to have major lows on the days that I dont wake up high.

I keep a diary of everything I do and even my DSN struggled to see a pattern in these highs which is why I am frustrated because not only does my carb ratio change by the time of the day which is fairly normal my ratio changes sporadically day to day without any patterns in it, hence why I cant see how the pump is going to help apart from not having to take injections which is a welcome break because I have literally no fat on my stomach but apart from that I cant really see the benefit.

I will keep on it though for 6 months but I think if I can see an improvement it will be back to pens for me.

 

[CarbsRok]

Hi all,

Got given an insulin pump last week but ever since I have had it my BG has been even more unpredictable.

I know that it takes a little while to setup and I know all the best practise house keeping for it like how not to get air bubbles and best place for the infusion sites etc but I'm not finding it to be a benefit at all, it seems that my BG readings are all over the place keep waking up with extreme highs 25+ the carb ratio I was using before now seems completely wrong sometimes and fine other times like lunch today for example:

Pre Meal: 6.3 68g of carbs 3.4u of insulin 1:20 ratio
Post Meal: 16.4 :-S

Yesterdays lunch went fine and I ate exactly the same thing.

How long does it take to set one of these up? In your opinion is it even worth having if my pens gave me more stable BG readings?

I was given a pump because my last Hba1c was 66 or 8.2%, this was put down to dawn phenomenon because a normal night for me is like this:

Bedtime 5-6
3am 7-8
7am 25+

but the pump isnt helping this at all and I dont see how it could because sometimes my sugar levels in the morning are fine so we cant increase my basal rates to try to cope with it because otherwise I could run in to serious problems on the 2 or 3 days a month that it doesnt happen to me.

Ok Tuff talk time.
Do your basal testing end of story.
If your basals are wrong which they will be as you have just started on a pump then nothing is right. If you start messing around with other settings then you are asking for trouble. Look in the pump forum as plenty of info there.

Rome wasn't built in a day and basals weren't fixed in a day.
Bottom line is the pump only does as you tell it. So if you have set **** basals you will get **** results. Pumps are not plug and play and involve a lot of hard work and even more frustration. before things come right. Good luck

 

[ChrisWoodward]

Ok Tuff talk time.
Do your basal testing end of story.
If your basals are wrong which they will be as you have just started on a pump then nothing is right. If you start messing around with other settings then you are asking for trouble. Look in the pump forum as plenty of info there.

Rome wasn't built in a day and basals weren't fixed in a day.
Bottom line is the pump only does as you tell it. So if you have set **** basals you will get **** results. Pumps are not plug and play and involve a lot of hard work and even more frustration. before things come right. Good luck

I'm not sure whether you meant to or not but talking down to me as if I am a child is hardly going to help.

I cannot test basal rates currently as my sugar levels are frequently exceeding 14 and the NHS guidelines stipulate that once your BG exceeds 14 you are to cancel the test and correct.

I am not stupid I do realise this will take some time but you seem to miss the point of what I have said, how can you set a night time basal rate to try to correct dawn phenomenon when it does not occur all the time and there is no pattern to it. No one seems to have been able to awnser this not even my DSN which is why I say if a pump cannot solve that problem then the treatment is no better than pens in my case because on pens my BG's were at least stable during the day.

 

[Spiker]

I agree it is a tough situation when you have a blinder of a DP - biggest I've ever heard of - but it's not reliable.

But were you able to control this DP using pens? Presumably not. It would be even more difficult with pens. I don't see any alternative other than waking yourself up to test if the DP has happened, and switching your basal programme accordingly. A very tricky one. Maybe make a case for a CGM so it can wake you if the DP doesn't happen?

Have they looked into any possible endocrine causes of this massive DP?

Volunteer for one of the overnight artificial pancreas trials?



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[Spiker]

Are you sure this big DP isn't an overnight hypo and rebound liver dump? That would make more sense than such a huge DP. In which case the solution would be to decrease overnight basal.

Sent from the Diabetes Forum App

 

[Spiker]

I cannot test basal rates currently as my sugar levels are frequently exceeding 14 and the NHS guidelines stipulate that once your BG exceeds 14 you are to cancel the test and correct.

NHS guidelines are not exactly written on stone tablets, you can use your own discretion of course. Are we talking about just the DP here? Fair enough you want to be cautious about correcting such a massive DP while you are asleep. But if there is any other part of the day when you are routinely going into 14+ BG that needs to be fixed. A fasting day to sort out your basal rates (other than the dawn to waking period perhaps) would be a good idea. At the very least that's a firm foundation for then tackling the tricky DP, if you get everything else right first.

 

[iHs]

Hi again

Try to get yr going to bed bg levels to be more or less the same by eating a lower carb meal like 30g instead of 50-60g and adjust the eve meal carb ratio in order to achieve it. Once youve done that, start doing some basal rate tests and any bg tests that are high, adjust the basal rate 2hrs beforehand and cancel the rest of the test. So, try to eat eve meal no later than 7pm and start basal testing 4hrs later every 90mins. At the moment, the weather temp is a bit up and down, so wait until the temps stay a bit more even (hopefully weekend) and then start the adjusting and the bg testing. Yr DP is a problem but whats wrong is that yr basal need for insulin is changing and so youve got to sort out the changes to the offending basal rates by testing them out.

Sent from the Diabetes Forum App

 

[CarbsRok]

I'm not sure whether you meant to or not but talking down to me as if I am a child is hardly going to help.

I cannot test basal rates currently as my sugar levels are frequently exceeding 14 and the NHS guidelines stipulate that once your BG exceeds 14 you are to cancel the test and correct.

I am not stupid I do realise this will take some time but you seem to miss the point of what I have said, how can you set a night time basal rate to try to correct dawn phenomenon when it does not occur all the time and there is no pattern to it. No one seems to have been able to awnser this not even my DSN which is why I say if a pump cannot solve that problem then the treatment is no better than pens in my case because on pens my BG's were at least stable during the day.

No I was not talking down to you.
My point was you must test your basals until you do, nothing will move. So put brain in gear and do the obvious, you know where you are high so increase your basal 1 - 2 hours before the high number then you have a better starting point the next day for testing.
Your way of thinking or total inaction means your blood sugars will stay high. Thus a complete waste of time and money having a pump.
As to DP sometimes and not others is normally caused by the type of food eaten the evening before. IE., High fat or protein will quite often leave type 1's high the following morning unless they use the right type of bolus for it.

 

[lilyfleur]

Ok Tuff talk time.
Do your basal testing end of story.
If your basals are wrong which they will be as you have just started on a pump then nothing is right. If you start messing around with other settings then you are asking for trouble. Look in the pump forum as plenty of info there.

Rome wasn't built in a day and basals weren't fixed in a day.
Bottom line is the pump only does as you tell it. So if you have set **** basals you will get **** results. Pumps are not plug and play and involve a lot of hard work and even more frustration. before things come right. Good luck

To be fair, this did come across as talking down to someone (and like you've ignored the point completely).

I can totally understand the frustrations as I have issues of massively fluctuating blood glucose which no amount of basal testing and recording of what feels like bloody everything seems to be able to solve (food, carbs, insulin, activity, amount of sleep etc etc). Unfortunately though the chances are the pump is the best way to control the problem because there's very little injections can do about dawn phenomenon (unless you inject as and when it happens, but even that would be easier with pump).
It sounds like the best thing you could do is see if you can get more CGM monitoring, maybe for a month, make sure the food (incl fat and protein details) and activity is logged perfectly for that time period, and if there are still no patterns I'd agree with Spiker and say make a case for keeping the CGM- that way you can adjust your basal rates for the majority of the time and the CGM will protect you from the odd nights where you don't have DP.



Type One Diabetes since 2001, Coeliac Disease since 2003 ish, IBS, and on and off depression and diabulimia.

Current HbA1c 11.7%

 

[ChrisWoodward]

Are you sure this big DP isn't an overnight hypo and rebound liver dump? That would make more sense than such a huge DP. In which case the solution would be to decrease overnight basal.
Sent from the Diabetes Forum App

Had thought this but the CGM showed (as well as 2 hourly night-time tests) it wasnt low, it just starts climbing rapidly at 4am though of course only some times though which makes this tricky.

NHS guidelines are not exactly written on stone tablets, you can use your own discretion of course. Are we talking about just the DP here? Fair enough you want to be cautious about correcting such a massive DP while you are asleep. But if there is any other part of the day when you are routinely going into 14+ BG that needs to be fixed. A fasting day to sort out your basal rates (other than the dawn to waking period perhaps) would be a good idea. At the very least that's a firm foundation for then tackling the tricky DP, if you get everything else right first.

Yeah I agree with you there will have a shot over the weekend.

Hi again
Try to get yr going to bed bg levels to be more or less the same by eating a lower carb meal like 30g instead of 50-60g and adjust the eve meal carb ratio in order to achieve it. Once youve done that, start doing some basal rate tests and any bg tests that are high, adjust the basal rate 2hrs beforehand and cancel the rest of the test. So, try to eat eve meal no later than 7pm and start basal testing 4hrs later every 90mins. At the moment, the weather temp is a bit up and down, so wait until the temps stay a bit more even (hopefully weekend) and then start the adjusting and the bg testing. Yr DP is a problem but whats wrong is that yr basal need for insulin is changing and so youve got to sort out the changes to the offending basal rates by testing them out.
Sent from the Diabetes Forum App

Cheers for your help as said above ill give it a shot over the weekend and see how I go.

No I was not talking down to you.
My point was you must test your basals until you do, nothing will move. So put brain in gear and do the obvious, you know where you are high so increase your basal 1 - 2 hours before the high number then you have a better starting point the next day for testing.
Your way of thinking or total inaction means your blood sugars will stay high. Thus a complete waste of time and money having a pump.
As to DP sometimes and not others is normally caused by the type of food eaten the evening before. IE., High fat or protein will quite often leave type 1's high the following morning unless they use the right type of bolus for it.

Please do not assume what my way of thinking is.

I asked a simple question to you last time which you failed to answer, if this DP cannot be corrected by the pump then is pump therapy right for me seeing as I had better BG results with pens, thats all I asked, this is my health at the end of the day and I am trying to work out what is the best treatment for me not whats best for everyone else.

All you have responded with is a mixed bag of reasonably helpful info, incorrect assumptions and attitude.

 

[ChrisWoodward]

To be fair, this did come across as talking down to someone (and like you've ignored the point completely).

I can totally understand the frustrations as I have issues of massively fluctuating blood glucose which no amount of basal testing and recording of what feels like bloody everything seems to be able to solve (food, carbs, insulin, activity, amount of sleep etc etc). Unfortunately though the chances are the pump is the best way to control the problem because there's very little injections can do about dawn phenomenon (unless you inject as and when it happens, but even that would be easier with pump).
It sounds like the best thing you could do is see if you can get more CGM monitoring, maybe for a month, make sure the food (incl fat and protein details) and activity is logged perfectly for that time period, and if there are still no patterns I'd agree with Spiker and say make a case for keeping the CGM- that way you can adjust your basal rates for the majority of the time and the CGM will protect you from the odd nights where you don't have DP.



Type One Diabetes since 2001, Coeliac Disease since 2003 ish, IBS, and on and off depression and diabulimia.

Current HbA1c 11.7%

Thats a good shout, must just battle on and see where I get. I did have limited success whilst on the CGM at correcting this DP, I set the CGM to warn me when my BG was increasing quickly, woke up and took some Novo, then went back to sleep and generally woke up in an ok (7-10) situation.

Problem is of course is that the CGM didnt always pick these rapid increases up however switching my Lantus to night time did help until I freaked out because I woke up at 4am on 1.1 no DP day I guess.

Ill stick with it and see where I get, at least I know its not just me who gets these dramatic fluctations for what feels like no reason, was starting to think I was going mad as I am well educated on how to treat diabetes, have been living with it for 15 years and I would say probably do more research on it than average (my work comes in peaks and troughs so I get a lot of free time).