Anyone struggling to get it right?

[ebony321]

I agree with you all. I was so excited to get the pump, as a needle phobic I thought this would solve everything, the first year was great, eventually got to grips with it, did all my adjustments, HBA1c came down and I got some control back in my life, however, during this second year of having the pump, I've had nothing but problems, constant hypo's from excersise, even just walking to the shop and back, I can't dance without having a hypo and I love to dance. The other problem that some of you are aware of is cannula changes, 1 in 4 go in - the rest kink, don't penetrate the skin leaving my sugars at 27+ everytime then of course it's back to the good old faithful injections.

I do love having the pump when it works as my control is a lot better than it used to be, don't get me wrong its not perfect, normal weeks I can run between about 6-12 but when the pump fails me I absolutely hate it with a passion! Take today for example, I've had about 3 hours sleep as I woke up in the middle of the night high, realised it was the pump, changed the set, gave a correction by needle and then woke up again with a severe hypo - twice! (my own fault probably by giving to much insulin) but when this happens I definitely contemplate going back to injections. I'm just not sure. Sorry for the rant all, i'm a bit deflated today Wonder when they'll cure us all ey??

Hi,

Can i ask how old you are if you don't mind saying?

Just that something may have just occured to me..

I've been told that for my size (i'm 5''3 and weight 9.5st) that my insulin requirements are quite high, but i'm 23 so my nurse had warned me that due to hormones and stuff when i get to 25/26 that these may drop dramatically.

Which could mean i could have a great 2/3 years on the pump, then all of a sudden when these hormones calm down that my requirements could change dramatically.

Just thinking this could be the case for people like you who all of a sudden it seems to go haywire?

Also, With the kinking issues, if your comfortable with it it may be useful to change to a steel cannula, i had a few kinking problems when i used a teflon cannula, and havent had and occlusions or mysterious highs that could indicate a cannula problem since i switched to steel ones. Not for everyone but this may help?

Just a few ideas

 

[liklejojo]

Hi ebony,

I'm 25 next month, my sugars aren't too bad at the moment, maybe they have settled down like you said, it's very interesting to hear about the sudden hormone drops though, I wonder whats wrong with me sometimes as I can be really insulin sensitive and then be quite resistant too - wierd!

I do wonder about the steel cannula's but I'm a bit apprehensive about the thought of having, almost like a needle permanently in me? does it hurt?

Not sure what the problem is with the teflon cannula's, they just won't go in and I can't really tell till 1-2 hours later when its a bit too late. My nurse said its because i'm too slim, but surely other slim people get on just fine... who knows....

 

[ebony321]

Hi ebony,

I'm 25 next month, my sugars aren't too bad at the moment, maybe they have settled down like you said, it's very interesting to hear about the sudden hormone drops though, I wonder whats wrong with me sometimes as I can be really insulin sensitive and then be quite resistant too - wierd!

I do wonder about the steel cannula's but I'm a bit apprehensive about the thought of having, almost like a needle permanently in me? does it hurt?

Not sure what the problem is with the teflon cannula's, they just won't go in and I can't really tell till 1-2 hours later when its a bit too late. My nurse said its because i'm too slim, but surely other slim people get on just fine... who knows....

Oooh, that could be why then, as your hormones are calming down. I was surprised when my nurse told me, as i was wondering why my requirements seem to be so high compared to some other T1's. Theres so many factors into diabetes it's hard to narrow things down sometimes, was just a theory though. I'm waiting til i age a few years to see if that theory is true for me!

I too was put off at first at the thought of it being steel, thats why i opted for the teflon first.

I find steel easier to insert, almost always painless, only ever hurts if i get a bad site or hit a nerve or scar tissue but that would be the case with teflon too.

I think it's down to an individual basis, lots of people are happy with teflon and have no problems, despite size and where they put it, but i know others have swapped to steel cannula's because of problems with teflon.

Do you leave your old cannula in when changing to a new one? with teflon i was told to keep it in until you know your new one is working properly then if you find there is an issue you can swap back to your old one, but i guess this might depend how your cannula works, i used to use the flex link plus which dettached from the tubing at the infusion site so it wasn't any hassle leaving it in for a few hours aswell as the new one.

You could always request to try a steel one, and if it's not for you then keep with teflon ones

 

[liklejojo]

sorry ebony, i've not figured out how to 'quote' yet lol

I've got my clinic appt in 2 weeks so i might ask them then and see what they say. fingers crossed hey. It's mad how hormones cause so many problems, that and stress I find. You wouldn't think stress could cause so much problems..

I do leave the old cannula in for a while but I should probably leave it in a bit longer until I know for sure the other one is in . I dread changing it sunday, it will no doubt not go in

What would you define a bad site as?

 

[ebony321]

sorry ebony, i've not figured out how to 'quote' yet lol

I've got my clinic appt in 2 weeks so i might ask them then and see what they say. fingers crossed hey. It's mad how hormones cause so many problems, that and stress I find. You wouldn't think stress could cause so much problems..

I do leave the old cannula in for a while but I should probably leave it in a bit longer until I know for sure the other one is in . I dread changing it sunday, it will no doubt not go in

What would you define a bad site as?

To quote: scroll down when replying and you'll see a box that lists all previous posts, in the top right corner of each post there will be a button that says 'quote' click this and it'll bring it into the post your currently typing

Yeah it's a bit of a pain, you think you have it down then it goes haywire again! i find if i'm emotional (mad, upset, stressed) my BG's tend to shoot up!

If your fine with it i would definately leave it in for a while just incase. Then when your sure the new one is fine then you can take the old one, i'm not sure how many people do this but i was advised to, and found it useful on a couple of occasions.

For me a bad site is when i go to insert it and it's very uncomfortable and unusually painful, if it's a good one i cant feel it when i move around. The other day i got a really bad one but only realised when my stomach touched my desk at work and boy was it painful, when i changed it it was very bruised, so i must have caught something.

Good luck if you do decide to try the steel ones

 

[jopar]

icklejojo

Do you self insert or use a gadget to insert!

I'm pretty thin well very to be truefull... I can't use any cannulars on my thighs just not enough of a fat layer even with using angle ones!

From what I gleem from seeing what other pumpers have said in the past,

It seems to me that those who use a gadget to insert their infusion set tend to suffer more problems with kinking or failing than those who self insert!

Not sure whether this is due to the power behind the firing making it more likely to kink if it hits the underlying muscle or perhaps a tough piece of skin or slighly more resistent fat area!

If you thing whether you self insert or use a gadget

Getting the cannular too near the muscle can cause problems with adorption, because you can find even though the end of the cannular isn't actule toughing the muscle so not causing a kink or occlusion the actuall insulin is pooling on top of the muscle effecting it's adsorption rates, hence sometimes the differnce..

And yes hormones can have a large impact on our Blood glucose levels very quickly at times.. I've spent 3 years trying to pin down the point of the month where due to my period my levels first drop into my boots for a couple of days, then I start getting resistent to insuin.. I hoped to be pro-active about it.. But alas I haven't found the indicator yet so still a reactive approach, deal with it when it happens...

 

[liklejojo]

thanks ebony I've finally found it, I was pushing the quote button above the plain text box you write in - what an idiot lol

Ah, I know exactly what you mean about your bad sites now, mine can do that, especially round the front of my stomach. too many years of injecting there i think, it must be old scar tissue. I will let you know if and when I try the steel ones, will have to see if the hospital will give me them first, last time I changed she claimed these were the only others available, now I know better!! Thanks for your advice

Do you self insert or use a gadget to insert!

Hi Jopar,

I use the spring gadget thing, I think sometimes the needle goes through the cannula and thats why it kinks not too sure though, your idea about it hitting the underlying muscle is definitely something i've thought of but wasn't too sure. I've got to change it tomorrow as well - here's betting the first one doesn't go in!! It never used to do it until the last 6 months were i've lost loads of weight. I can't believe it has such an effect being skinny!!

Is it ok to use different sites, as my pump nurse just said to stick with my stomach?

I didn't know about the slow absorption over the muscle, that would certainly explain the abnormal highs.

I take it you self insert???

 

[jopar]

Hi icklejojo

Yes I've always have self inserted, when I was choosing my infusion sets I was shown the verious rouche kind the flexilink, 90 degree and the 45 degree tenderlink (the one I use) then the rep showed us (I started with 3 others) the inserter gadget, firing it against the table.. Put off in one fell swoop!

Congratulations of your weight loss with this in mind perhaps it's time to start using a shorter cannular see if this improves things for you..

when I went on the pump it was hoped that I might gain some weight, as I'm struggle to stay on the right side of the line between being underweight and borderline underweight.. but alas all I've managed put on is 1kg on a good day and contrary to believe it ain't no fun being zero size at all..

 

[MushyPeaBrain]

liklejojo have you tried storing your sets in the fridge? It toughens the cannula slightly and it goes in much better. I use an inserter and was getting kinking, esepcially in the warmer weather, but since putting them in the fridge haven't had any more kinks.

I have lost a huge amount of weight since pumping (all put on due to allergy to Levemir) and I thought I was hitting muscle. I can't pinch an inch anywhere on my legs and am wondering if using a straight set will start to cause issues in I lose any more weight. Hoping not!

 

[liklejojo]

Hi icklejojo

Yes I've always have self inserted, when I was choosing my infusion sets I was shown the verious rouche kind the flexilink, 90 degree and the 45 degree tenderlink (the one I use) then the rep showed us (I started with 3 others) the inserter gadget, firing it against the table.. Put off in one fell swoop!

Congratulations of your weight loss with this in mind perhaps it's time to start using a shorter cannular see if this improves things for you..

when I went on the pump it was hoped that I might gain some weight, as I'm struggle to stay on the right side of the line between being underweight and borderline underweight.. but alas all I've managed put on is 1kg on a good day and contrary to believe it ain't no fun being zero size at all..

My pump is a medtronic one so my sets are different to the ones you've mentioned, I've tried the paradigm and silhouette sets but found the paradigm less painful, apart from the kinks, so i've stuck with that for now. Now that I have a few more options that I didn't know about I'm going to ask my nurse to find me them all lol.

Sorry to hear about your difficulties on gaining weight - still even a kilo is better than nothing at all! you must be busy bee?? Do you use suppliments as well?

 

[liklejojo]

liklejojo have you tried storing your sets in the fridge? It toughens the cannula slightly and it goes in much better. I use an inserter and was getting kinking, esepcially in the warmer weather, but since putting them in the fridge haven't had any more kinks.

I have lost a huge amount of weight since pumping (all put on due to allergy to Levemir) and I thought I was hitting muscle. I can't pinch an inch anywhere on my legs and am wondering if using a straight set will start to cause issues in I lose any more weight. Hoping not!

OMG that must have been a challenge, did they change your levemir to something else? I've just changed my set and popped it straight in my leg for the first time ever and it went in ok this time, maybe my chunky legs saved the day. I will try and put a few sets in the fridge though for the next time I insert into my stomach - interesting about the weather though, the heat doesn't do much for us all does it.

 

[iHs]

Hi

A while ago Medtronic launched a new set called the Mio. It's very much like the Inset II to put in and has its own self contained spring. Some don't like it but others say it's good and has less problems than the Quickset.

Also, I don't always get my bg levels all ok either. Sometimes its due to whatever reason usually the weather temp changing. Also, I find that when I try to insert elsewhere on my body, I need a different basal rate and carb ratio. I'm trying to not use the same area over and over. I think a pump definately makes you much more sensitive to insulin's action on bg levels.

Since starting pumping last June I've also lost weight - about 3.5kgs now. I still eat about the same amount of carb as I did on MDI. Amazing what effect insulin really has on the human body :?

 

[liklejojo]

Ooh I'll have to have a look at that new set, thanks iHs.

Who would have though insulin was a weight buster!

I've had my set in my thigh for 2 days now with no problems so fingers crossed i've solved half the problem Yeey!

 

[Cheryl]

It's comforting not to be the only one having problems with a pump. I've had mine for two years & the only benefit has been a reduction in my Hba1c (until recently!) After years of MDI with middling Hba1c (around 7 to 7.5) but suffering multiple mild hypos I was persuaded to go on a pump. By this time my Hba1c had risen to 8.5 but I still suffered around 30 hypos per month. I really really didn't want the pump, but my doctor insisted that it would sort out all my problems.
My bgs initially dropped to 6.8 then stabilised around 7 but I still couldn't shift the hypos. 20+ per month was average. Then, suddenly 18 months in my Hba1c jumped to 9.8. I'm at the end of my tether, I don't know what to do next. In trying to bring down the hba1c, I'm now running at 60 hypos per month. I don't like the pump, but have got very used to the lack of injections & flexibility when eating out. I have skipped dozens of meals to get my fasting basals right, but still seesaw from 14 to 3 in 2 hours, then the next day I stay at 13 all day on the same meal.
I have to ring for my Hba1c result today, following the 9.8, I'm dreading it, on 60 hypos a month it should be 6, but I bet it'll be higher.
Any advice on dealing with this situation would be gratefully received.

 

[ebony321]

It's comforting not to be the only one having problems with a pump. I've had mine for two years & the only benefit has been a reduction in my Hba1c (until recently!) After years of MDI with middling Hba1c (around 7 to 7.5) but suffering multiple mild hypos I was persuaded to go on a pump. By this time my Hba1c had risen to 8.5 but I still suffered around 30 hypos per month. I really really didn't want the pump, but my doctor insisted that it would sort out all my problems.
My bgs initially dropped to 6.8 then stabilised around 7 but I still couldn't shift the hypos. 20+ per month was average. Then, suddenly 18 months in my Hba1c jumped to 9.8. I'm at the end of my tether, I don't know what to do next. In trying to bring down the hba1c, I'm now running at 60 hypos per month. I don't like the pump, but have got very used to the lack of injections & flexibility when eating out. I have skipped dozens of meals to get my fasting basals right, but still seesaw from 14 to 3 in 2 hours, then the next day I stay at 13 all day on the same meal.
I have to ring for my Hba1c result today, following the 9.8, I'm dreading it, on 60 hypos a month it should be 6, but I bet it'll be higher.
Any advice on dealing with this situation would be gratefully received.

Awwwe bless you, sounds like your having a really tough time.

Are you hypo's due to not having hypo awareness?

Sounds like your HBA1C won't be very truthful in reflecting your control if you are swinging high and low.

I would concentrate less on bringing your HBA1c down until you can reduce the amount of hypo's your having...

Do you carb count accurately? personally i don't weigh things anymore, i do count from packets though. If i started to slip control wise, i would go back to weighing accurately to make sure my ratios were spot on.

Your likely to find it quite hard to get ratios right until you have your basal correct, which i know is a pain when your fasting time and time again to tweak things, i went through a period of tweaking basals down to avoid lows then as a result i would swing high, so felt like i was getting nowhere, but eventually it seemed to slot into place.

Have you considered a GCM? i would think you would be able to trial one from your hospital as the amount of hypo's your having should warrant borrowing one?

If you really are uncomfortable on the pump and feel like it's making things worse than better then tell your consultant it's not working right now and you would like to go back to MDI, pumps don't work for everybody, but theres no reason why you can't go back to it later on though!

 

[Cheryl]

Hi ebony321, thanks for the info. I do carb count religiously. What I really struggle with is change. I can't cancel life for 3 months while I fast & rest, so I have to try & work out the reason for each hypos & I think that's where I struggle. I don't need much insulin, usually 35-40 units a day, I'm active, I swim, cycle & gym, but not with enough regularity to affect my basals continuously. I also think that it was by trying to exercise only on a basal adjustment only that I pushed my Hba1c up. I know what you're saying about dealing with hypos then sorting out the Hba1c and that's what I'm working on.
The trouble is, managing to get more than 1 day hypo free so I can start on with it. After all, hypo begets hypo. I worked out twice over the weekend & despite reducing my basals to 80% all night, I was still hypo.
I don't think I want to go back to MDI as things were no better then, I don't like the pump, mainly because I'm vain, but it does have some advantages.
Thanks for the supportive words, I wish that I could ignore it all for a few months then pick myself up & get back to it, but unfortunately that can't happen.
I tried CGM twice when I first got my pump. I've been offered it again, I will probably do it though I find a 5 day snapshot not terribly helpful, it's not long enough to evaluate make changes & reevaluate.
I keep telling myself that I'm lucky to have all 4 limbs, a working brain & a comfortable living, there's a lot of people worse off than me. Keep plugging on...

 

[ebony321]

I can imagine it's difficult to pin point hypo's and causes if you have them so frequently!

Have you tried breaking the whole thing down to basic doses and working your way up again? I mean by slashing your basals and ratios right down, and building them back up, sort of like starting a fresh. But it would mean you would have alot of highs in the beginning. I did this with MDI a few times when i couldn't get things right and sometimes it worked for a while, until i traded it in for the pump!

I understand what you mean by sort of having a break then coming back fresh faced, it's hard when it's an everyday thing and it does get tiring.

5 days doesn't seem quite long enough really does it, would they not let you double that period at all?

You're right in saying you still have your limbs, your brain, comfortable living, but still give yourself some credit, it takes courage and effort to tackle diabetes head on, especially if you've been struggling with hypo's for so long, and so many!

I went through a period of having around 2-4 hypos a day, this was in the early days of the pump, it absolutely drove me crazy and i really did think about handing it back, i felt like i was being terrorized! so i sort of know how you feel.

I wish i could be of more help and suggest something new and innovative!

Do keep trying, try starting over maybe, see if you can get the CGM for longer than five days. Keep a diary and try to find a good routine you can settle into whilst your getting things on track.

Keep posting too and let us know how you get on.

You can do it, i'm sure of it. Some people get it right straight away (lucky buggers) and some people (like me thats for sure) take a bit longer as everyones different.

good luck

 

[Cheryl]

Hba1c down from 9.8 to 6.5! At least I now know that I have some room for manoeuvre to reduce the hypos without the dreaded 8+ Hba1c hanging over me.
Back to skipping meals & being grumpy with everyone while I do it I suppose, double check those basals & pare back by 10-20% for at least 24 hours after exercise.

Four days of July gone, 10 hypos so far. One day it'll be 10 in a month. If I say it often enough, it'll come true.

Thanks again for the words of support ebony, it does help.

 

[ebony321]

Hba1c down from 9.8 to 6.5! At least I now know that I have some room for manoeuvre to reduce the hypos without the dreaded 8+ Hba1c hanging over me.
Back to skipping meals & being grumpy with everyone while I do it I suppose, double check those basals & pare back by 10-20% for at least 24 hours after exercise.

Four days of July gone, 10 hypos so far. One day it'll be 10 in a month. If I say it often enough, it'll come true.

Thanks again for the words of support ebony, it does help.

That's good, i'm sure if you can get rid of the majority of your lows and bring some highs down you can keep a good HBA1c and feel better!

Definately keep telling yourself that! it's better to set little targets that you can acheive one at a time than aim for perfect control and feel terrible when you don't quite make it.

Even if you still have alot, if it's less than the month before so it's an improvement!! then before you know it it'll be minimal hypo's and you will feel loads better!

It's no problem at all, it's what the forum is for, sometimes just friendly words help more than factual advice

Really do hope it gets better for you. Hang in there

 

[donnellysdogs]

Are your hypo's all at random times, or are there patterns? i.e. are weekends different to weekdays...I know when I walk dogs I have to swich my pump down to 70% 2 hours before walk, and have got a bolus for eating pre walks...activitys might just be the same sort of thing for you...

As an idea? If your hypo'ing so much, and they are at random times wouldn't it be an idea to lower your basals up by 0.02, or 0.03 an hour over the 24 hour period and then to concentrate on getting rid of the higher levels? I had to do this when I went on to citilopram-it lowered my BG levels so dramatically I had to get them up and then sort out any peaking that occured, but at least I knew I was safe....I actually raised mine by 0.05 an hour for the whole 24hour...knew that my lows were pretty constant all day though and a friend suggested that the drug was to cause and she was right.

When looking for patterns don't just look back on a daily basis, check back and look if they are at weekends....or every Wednesday etc..... or 2-3 hours after food-becuase then it may well be your bolus's that are out.....

I would be loathe to go back to MDI, as I just like my remote control to be honest..and like to just type in the carbs and hit enter!!!! (Very basic!!)....I also just been away for the weekend, and I loved the fact that I didn't have to worry have I got my insulin pens with me etc...where are they etc....etc... I know my pump is on my arm, and my best pal the remote is in my bumbag....and I was amazed at the extra bit of flexibility it gave me, I am dead chuffed with it for my weekend away experience....

You will get rid of the hypo's...and after 2 years on a pump, I am sure that you know what to do, but just don't really want to faff around to do it...I also hate fasting!!!!