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Maybe coming off pump

I'm presuming since you got your pump you run regular basal checks and not on the basal rates your dsn has set.

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brett said:
Have you tried all available sites, and all different types of cannula

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I have skinny arms so all that is left is abdomen – When I changed from MDI last year I was using 6mm needles so started with 6mm cannula. I have tried 6, 8 & 10mm Rapid-D Link steel cannula inserted in as many places in my abdomen as I can reach. I was wondering about the FlexLink cannula but don’t see how they would be any different?
 
brett said:
I'm presuming since you got your pump you run regular basal checks and not on the basal rates your dsn has set.

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Yep. I check them at least monthly and occasionally tweak them a little. My basal rates seem to be quite stable when things are working properly. The insulin not working thing can last from a few hours to four days. If it is going to be a long one, changing the cannula/set/insulin makes no difference. I have a second basal rate profile that is about 50% higher than my normal one that I switch to, plus I set the bolus advisor to add 20% to all boluses. Doing this plus my CGM means I muddle through. Don’t get me wrong, I would never want to give up the pump. When it works, my bloods are usually above 5 and less than 10 which is fine. The good bloods continue for a week or two then suddenly, when I have been lulled into a false sense of security, the high BM alarm on the CGM goes off and I start pumping in insulin that does not usually work and off we go again.
 
This is major problem for me i have been on pump 4yrs with constant highs and lows to the point when i feel i am going hypo i will be 14+ over these years i have driven myself crazy now at last consultant for first time last week said gosh you really have been doing everything i would have done i.e increasing for highs eating more for lows he then said wait on i feel your body is going into a kind of insulin shock what he meant was when you respond to a high with increased insulin it appears to scream out emergency too much insulin and instead of a steady decrease in bg it releases i.e rebounds releasing stored glucose from liver etc which then increases bg even higher and of course this leads to another high dose of insulin (merry go round of feeling ****)! He cut bolus/sensitivity settings as well as increasing insulin time from 4hrs to 6hrs in order to cut insulin amount and said i want to see you high all the time without hypo's to give your body time to recover.
It has made a huge difference up to now but of course time will tell and getting settings right will not be easy because he said you are very insulin sensitive? I am will be really annoyed if i have spent 4+ yrs with no quality of life all because experts have stuck to the norm and not looked outside the box? Its the easy answer "the patient is cheating"
 
There are some angled sets specifically for skinny places. They look lethal as they are massive compared to other ones but, as they go in at an angle same depth, and, fine to insert. If you have not tried your arms for a while, would be worth a try, specifically if you got absorbtion issues with current sites. The metal cannulas can react with fatty tissue but, if that was happening would expect to happen all the time, not just some of the time. Again, worth a go with the flexlink but, if you try them ensure you get the inserter device for them. I first tried these and inserted manually as the rep had no inserter devices when I was issued pump. Result was they bent 50% of the time. Tried the rapid ds but, found they came loose quite often and insulin not always inject,but would leak out. Hope you.manage to.sort this issue.

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Had a good look at the flexlink tonight and saw that the introducer needle slides up the centre of the cannula and just a tiny bit of the needle shows. This explains why the insertion device needs to be used to ensure a fast swift delivery so that tne cannula doesnt bend. No good really pushing this set in slowly by hand. Have used Tenderlink but much prefer Flexlink

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Don't get me wrong, I did it as quick as I possibly could, but, the outcome was 50\50. Since using the gizmo 100% (till today).

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If levels going high at peculiar times do please check the lueur connector on the tube connecting to the pump.

I started to have odd higher levels today, checked my set to look for leakage and then the lueur lock connection. For the 3rd time now, after using 3 years without any problems I discovered that the tube was not connected tight. I check this every morning now because of 2 previous incidents, in recent months.this morning it was tight, but by 5pm it was slightly loosened, enough to interrupt my supply of insulin in to the tube.


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I get on OK with the Rapid-D’s – They usually stay put, but I will get a box of FlexLinks and an inserter & see what happens – If no joy I will try the TenderLinks - Thanks for the advice! I did not mention earlier, but the insulin not working problem sometimes reverses and it works TOO WELL, but this is not often and usually goes back to normal after a day.
 

This is interesting but may not apply to me as the CGM means that my BM does not get too high as I get the early warning and can correct. My hypos are down to one every two months or so for the same reason – When my bloods fall to 5 mmol/L the CGM beeps and I have some carbs. It is just that when it does go wrong & the insulin does not work too well, I am correcting with extra boluses eight/twelve times a day. Each time I correct I wonder if it will suddenly work & send my bloods crashing down. When things are OK, I do not need to correct at all.
I think that everyone should get a CGM with their pump.
 

You are right a CGM could prove really helpful but at present cost is the problem maybe when they succeed in making CGM's more reliable and accurate they will be more available? soon i hope?
I have asked if i purchase a CGM would NHS supply me 1-2 sensors a month in the hope that i could keep a better check on what is going on but up to now not been successful`
 
I have tried REALLY hard to get funding for the CGM sensors but no joy. I was hopeful as I managed to get my GlucoJoice on prescription (It is a much nicer way to bring you BM up rapidly than the GlucoGel which is like eating frog spawn!). My argument was that the Glucojuice is 15g CHO which is the NICE recommended amount. The GlucoGel tubes are, I think, only 11g CHO so do not meet the NICE guidelines.

My DSN said that I may stand a chance of funding if I lost my hypo awareness (And thence my driving licence and job).

My (Dexcom) CGM costs me around £260/month. A pack of four sensors costs £257.50 and every nine months or so I need a transmitter which costs £332.50. The sensors are meant to last seven days, but I can sometimes get them to last upto two weeks hence the rough figure of £260/month.

I agree it is hideously expensive, but before I got it I was having 4-5 hypos a week plus loads of highs. This was despite testing 12-15 times per day. As I said before, the CGM has really helped!
 
Hi Platinum,
Do you pay tax on your sensors? As I only pay £186 for 4 sensors, although it may be cheaper as I'm an animas pump customer, maybe worth asking if you can get them cheaper somewhere else?
On your original post, I have a similar problem although I find it really hard to put a precise pattern to it. Mine i know now is due to hormones, although I went years pre and post pump without knowing why, wasn't until I saw a really nice gynae that we tested hormone levels when my bgs started to fluctuate that we put some sort or picture together. I know that doesn't apply to blokes or so much anyways but sometimes there might be something more hidden going on, that doesn't really cause any trouble apart from occassionally flutuating bg levels.
I've gone 2 days now without having my CGM attached to me, feel like my arm has been cut off, my target i'm aiming to get to is always in the green, still a long way off but ever so slightly more closer now.
 
I have completed the VAT exemption form so don’t pay tax on the sensors. I have tried to get the sensors for a lower cost, but have had no luck. Do your Animas sensors last longer than seven days?

I chose the Dexcom for its accuracy and the fact that the sensors usually last for longer than seven days, so felt it was the most cost effective CGM.

I know what you mean about the CGM not being used – Every seven days I have to tell the CGM that a new sensor has been inserted (Even if one has not been and I am just reusing) and it takes two hours to reset - during this time I can’t use it – I also feel really worried about my BM’s during this time.

Before I bought it I planned to use it to stabilise things and then leave for a week or so; but now I really would not be without it – CGM should be mandatory for all pumpers!

When your BM’s were fluctuating, how much help did your DSN give you? Mine has told me that what I have is a good as it gets?
 
Hi Platinum, it's the same sensors that we use I just get mine from animas which appear to be cheaper than where you get yours from, but that might just be because I'm a pump customer of theirs but it's worth a call to find out. As it's the same sensor yes they last longer my last one was in for almost 4 weeks and eventually was too innaccurate so I took it off.
Unfortunately, my DSN is absolutely lovely but as useful as a chocolate teapot when talking about fluctuating readings like mine. She advised me to not just react to every high that I get and try and see patterns so that's what I do I don't get too pinickity about it I could see myself get very OCD about it but then I wouldn't have a life. The CGM has been amazing I've been able to stay green (between 4.4-10) for the last 4 days which would be impossible without the CGM, I'm getting really excited to see what my next HbA1C is like as I imagine it will be a big drop from the 9 odd reading I had before christmas after having tonsilitis then bad cold then cough still don't think I'm fully cleared up yet lymph nodes are still swollen (hate being a student and getting other peoples germs errr!) I'm going to say mine once I've had a lot of practice with my CGM will be as good as it gets and that may well be worse than someone just on injections, but I'm happy with that!
 
Hi Pumppimp
Thanks for the sensor info – I have just emailed Animas & asked if they can supply me.

When I was first offered a pump, I was given a choice between the Animas and the Accu-Chek. I chose the Accu-Chek as it has a remote control.

My DSN is also really helpful and amazingly knowledgeable, but I run into a brick wall when I try and discuss my erratic insulin absorption. My Hb1AC has always been fairly good, my most recent was 6.4 and my DSN and consultant don’t seem to be able to see beyond it.

When I was on MDI, my BM would fluctuate between hypos and high twenties just about daily, but my Hb1AC never went above 7.6, so I was told ‘I wish all the diabetics I looked after were as well controlled as you’.

I am due my fourth laser eye zapping in the next few weeks and have been told I will probably loose my driving licence this time – I blame a lot of this on the ‘specialists’ that could not see past the good Hb1AC. Last time the eye specialist told me the worst thing for your eyes is a rapidly fluctuating BM!
 
Hopefully you'll get a better price, Sorry to hear about your eyes. I know what you mean about the standard deviation of control, In my opinion I would rather be stable and a few points higher on the HbA1C scale than in target but zipping up and down. I remeber going in and getting told off about my 7.8% I think it was and being shown somebody on injections who had a lower HbA1c and told that to fluctuate and have lots of hypos and hypers was normal and that I must have had really bad highs to get my 7.8%. He was mortally embarrassed when i showed him my readings and realised that I did check regularly and rarely went into the twenties, I just prefer to be slightly higher when going through a bad patch or when feeling unwell.
I've not had my CGM long although I also need to be careful that I don't manage to pull my control in too tightly too quickly or I might be in the same situation, I was told about some background retionpathy 6 months after my pump but has since cleared up, hopefully I won't do the same thing.
 
I agree – I would rather a slightly higher HbA1C than the fluctuating BM’s. When my insulin absorption is OK, I manage excellent control – I can easily keep my BM’s higher than five and less than ten for a week or so, but then it all goes haywire for no obvious reason. I am currently keeping a diary of ambient temp, food types consumed, insulin dose, cannula location etc. to see if I can find a correlation.
One thing I have found that helps, is to give my insulin gradually using an extended bolus. If I need say 20 units, I get better results giving it over 30 minutes then all in one go – My thought was maybe less chance of insulin pooling?

I can’t wait for a ‘closed loop’ system, but until CGM gets more reliable, this won’t happen.

Hopefully your retinopathy will stay away, especially as you seem to be under better control now. I have been diabetic since 1974 – The days of being given four needles to last the month along with stainless steel wires to keep the needles unblocked!
 
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