Going to throw this pump out of the window!

[AlexandraMarnie89]

May has not been a good month at all. Started on a pump on 13th and all was great...for a grand total of 3 days! Then I started hypo-ing really bad, terrible weekend at work, but managed to get back to normal throughout the week. Back to the weekend and hypos again, even with an 80% reduction in my insulin. Managed to get back to normal again for last Monday and Tuesday when I saw my consultant. He programmed in some additional basal rates... Then it all went wrong. Levels in high 20s, 30s and then flashing hi. Ended up in hospital with full blown DKA. Managed to get my levels down and go home where they very quickly spiked again! I've had 2 low carb days (under 40g) and have bolused for everything including adding some for the protein. I haven't been below 14 since this morning and am on 250% of my basal (usually 18.64 so now around 46.6?!!!) and still at 14.6. I've done all the usual- site change, prime, change of insulin etc so now don't know what to do! Saw my DSN this morning and she wasn't happy with the amount I'm taking, said it's too much even though I'm still high :/ tempted to just go back to MDI - any other suggestions/advice?

 

[Saber]

May has not been a good month at all. Started on a pump on 13th and all was great...for a grand total of 3 days! Then I started hypo-ing really bad, terrible weekend at work, but managed to get back to normal throughout the week. Back to the weekend and hypos again, even with an 80% reduction in my insulin. Managed to get back to normal again for last Monday and Tuesday when I saw my consultant. He programmed in some additional basal rates... Then it all went wrong. Levels in high 20s, 30s and then flashing hi. Ended up in hospital with full blown DKA. Managed to get my levels down and go home where they very quickly spiked again! I've had 2 low carb days (under 40g) and have bolused for everything including adding some for the protein. I haven't been below 14 since this morning and am on 250% of my basal (usually 18.64 so now around 46.6?!!!) and still at 14.6. I've done all the usual- site change, prime, change of insulin etc so now don't know what to do! Saw my DSN this morning and she wasn't happy with the amount I'm taking, said it's too much even though I'm still high :/ tempted to just go back to MDI - any other suggestions/advice?

Hi. It has taken me over a year to get to a better position but I am still not stabilised fully on the pump and have too many high sugars currently, but it is gradually improving.. I like the freedom of not injecting all the time but it does have its downfalls. I am so sorry you have had such a bad time. And you are trying to hold a job down. It must be very hard.
It sounds like you are really poorly and they need to put more effort into stabilising you. Can they not get you into the clinic for a few days running and get it more stable. It sounds like someone calculated your daily needs wrong. But just a tip. I found recording every test and hypo and unwell ness due to highs was necessary. Then I got the hospital to download the information and analise it with me. One of the things I di was kind of keep a similar diet for weeks and have regular meal times and do it like the old days where you have breakfast , lunch and dinner and three snacks,one mid morning,one mid afternoon and one before bed.
This then allows a pattern to develop. If there are too many variables it does not work because it is too hard to analise the stats. Once you get more balanced with the regular regime then you can adin or miss the occasional snacks and change the boluses accordingly.

 

[jack412]

if you are crook and your medical support haven't an immediate solution, I would go back on injections to level out. I would ask for a referral to a consultant [I think that's a uk specialist?] to work your pump with you.
long term most seem to love their pumps, so hang in there. the nurse telling you it's too much insulin when you are high, needs a kick

 

[donnellysdogs]

First thing... If the pump isn't bringing levels down after corrections etc then you should manually give yourself an injection...

I guess you know how to change your basal rates yourself.. And this is what you should be looking to do.

Any corrections when I have gone above 12-I double the correction bolus.

What length needle are you using.. I assume that you have changed batteries..... A new user will use up batteries faster than someone who is relaxed with their pump and doing less corrections etc....

Give us a days readings and see if we can help.

Many consultants suggest changes and unfortunately I have heard of many times when the changes have left the pump user in dire straits.

It seems to me that at weekends when you were having hypo's that you may need to have a 2nd profile set up to switch to. This is easy to do. Or you lower say by 70% instead of 80%.

There are a multitude of ways to approach this... One I wouldn't suggest is giving up....

1st step.. If high manually inject a correction to bring you down... (If this works and corrections on pump aren't-then this would concern me that something isn't quite right with ur pump..).

If correcting over a level of 12 do consider that the correction level the pump is suggesting could be tweaked higher. It is set up to bring to target levels when u are under 12... Above those levels you may have to add some on to the dose it suggests...




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[dancer]

There is obviously something wrong when your basal is so much higher. Remember to correct with an injection when you have ketones.

It could be you need a change of infusion set (length of cannula or type of set). Or maybe you are coming down with something and don't know it yet!

Maybe I've misunderstood but, in the first week or two, I think you seemed to go hypo at work. It could be that you need a different basal pattern for work days (I did).

It does take a long time to get the pump "tuned in" to our bodies and the fact that we are all different doesn't make it easy for anyone to advise you.

If things don't settle down, don't give up. (Easy for me to say, I haven't had all the hypos or DKA!)

You could ask for a week's use of a sensor, to see if that can pick out what's going wrong. - In my early months of pumping, things weren't settling down and my DSN asked for a sensor to help find a pattern. This was in Glasgow but hopefully your health board does the same kind of thing.

At the beginning of the year, I had lots of highs which weren't helped by basal changes. This went on for weeks until I changed to a new vial of insulin. It never occurred to me that it could be the insulin as there were no ketones, but (rightly or wrongly) I am now convinced there was something wrong with the previous 2 vials. I asked at Boots, when I was collecting a new prescription, if anyone else had had the same problem. The pharmacist said it would be unlikely for only 2 vials to be faulty when I always got 4. She then checked the batch numbers of the 4 vials she was giving me and found 2 from one batch and 2 from another.

You did say that you changed insulin but did the vials have the same batch number?

I hope your consultant and DSN come up with something quickly. It must be so difficult for you but, as I said before, don't give up. It is worth it in the long run!

 

[iHs]

Like DD has said....you should look in the manual to see how to adjust the bssal rates yourself. As a general rule of thumb, the basal rate needs to be adjusted 2hrs before the low or high bg occurs. Always correct a very high bg (13 or above) with insulin pen or disposable syringe to safeguard DKA and add a bit more on to the correction dose.
Gradually you will get there with some basal rate testing and testing bg levels every 2hrs. In the meantime.....if you are going high 2hrs after eating, adjust the carb ratio but do a correction if outside the target range.

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[Spiker]

Running 250% basal rate unless you are clearly feeling very ill is pretty strong evidence that pump delivery is failing.

Don't give up unless you have absolutely had enough. After my second DKA I had 24 hours off. You've got to climb back on that horse. xxx

 

[Engineer88]

Out of interest what pump are you using?

Where have you got the infusion site?

 

[donnellysdogs]

Just had a friend tell me she has had to have new sets sent to her because of non delivery... This was flexlink 6mm. This too pushed her daughter up to almost 30 and more than 1 set occurence. Accuchek sending her some more. Hope you aren't possibly using same sets... Could be a peoblem with a particular batch number.

The other thing to do us to also try to irder in small quantitys of sets, tubes etc.. So that you can get a mixture of batch numbers, just incase a box of sets appears to be a rogue faulty box...


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[AlexandraMarnie89]

Hi everyone,

Thanks for all the comments. I am using the accu check combo pump and the flex link 30mm infusion set. Site is right side of my stomach just below waist band.

Weirdly it never crossed my mind to check the batch numbers on the vials, though I did draw up some from a cartridge instead of a vial last night and I seem to have had *lower* readings today (touch wood). Saying this, I have gone even lower with carbs today (under 30g) and I am still on a temp basal rate of 170% though. Also had a weird rise this morning. Woke up at 8am levels at 5.3. Had my breakfast an hour later and pre breakfast test at 9am was 12.8...what the...?!!!!

I was doing corrections by pens but also having no joy with them.
I programmed in 2 different basals for work (one for Saturday and a much lower one for Sundays) with the help and calculations of my consultant last Tuesday but due to being hospitalised this weekend I haven't had the chance to test them out yet. Hopefully I will be able to this weekend.

 

[donnellysdogs]

Your hour difference from 8-9am is normal DP.. Just needs you to alter your basal rate correctly to lower that reading.

Mine were like this the first few days and even now it can hit me differently when I get up at 5am or 7am.

You have the same sets that my friend has had replaced today..it may be worthwhile talking to accuchek and explain that you ended up in dka, tell them the batch number of the sets you are using and get them replaced.. Accuchek are really good at this. They also need to know when people get failed insulin delivery.

However with your morning levels today, that is just fine tuning your basal rate for that hour.


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[iHs]

Another thing to consider is when you got up at 8am and bg was ok, did you have any cups of tea before breakfast at 9am? If you did, then the milk in the tea or coffee will make your bg levels change. Once youve done some basal rate adjustment, the pump will start behaving itself. What you need to do is adjust the 7am basal up a bit then that will lower the bg from 8.30am to 9am so you should see a better bg level.

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