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Need some information.

Julie1471

Julie1471

Well-Known Member
Messages
504
Location
Broadstairs,Kent
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Having high blood sugars!!!!!
Hi, I've been a type 1 , for 30years now, and have always found it hard to control, no matter what I've been told to do and try, on my last app my hb1 was 7.6%, which is the lowest it's ever been, but to get it that low I was having constant hypo's each day and on one occassion I had 3 in one, at my last hosp I felt perfectly fine and drove to it , I had a good breakfast before going, when they tested my sugar it was 1.3 and I had no hypo signs it wasn't till I got back to the waiting room when I started to feel it. Anyway got asked to come back today for another app with the reg that I saw last as he cut all my insulins. and the result was BS through the roof at points at 17.2 and then crashing hours later overnight it dropped to 1.8, with no signs, I also don't get the symptems that go with a high, no going to the loo a lot or feeling thirsty. Today at the app I showed what my bloods had done over the past few weeks and he came back with I should be considered for the pump and he is making me an app with the diabetes nurse. Now for the past 15 years I have been told try this and if this dosen't work we will get you a pump. Now today I feel I have got a step closer, and feel a little happier. As I rember being told when I was diagnosed you run your life round diabetes not your diabetes round your life, but I feel I have become so restricted with diet, eating the same diet as I carb count, so I can control my sugars, but it's not working. So today as I said I am being considered for a pump, as this has had a drastic effect on not only my life but my family's as well, my husband is worried all the time he is at work . Now I would like to find out if their are any other guidelines that I need to look at apart from the NICE ones.???
I also test as much as I can, which can get quite sore at times, due to the fact that I only have one hand to test from.
 
A pump will only ever be as good as the user. What I mean by this if your control problems are based around lack of knowledge or empowerment to take control of your diabetes, this isn't going to change with a pump!

But if your control problems is based on, that it's the insulin failing you as you can inject it to use the insulin profile to counter react then yes a pump will be very helpful with gaining control...

A book I suggest which is considered to be the bible for pumper, is Pumping Insulin by John Walsh. this goes through all aspects of insulin pump therapy, how to work out basal settings, bolus settings, corrections... How to use the different basal settings, how to use the TBR (temp basal rates) working out the various factors that you need to set up your pumps wizards etc...

Any wearing the pump, you get used to pretty quickly, and you soon get used to wear to place it with what clothing or activity etc...

And at the end of the day, if they offer it give it a go, if you don't like it then you can always hand it back! But there's not many people no matter how apprehensive they've been about the pump, once they tried it have given it back!
 
Sorry mabye I didn't say it, I do muliple injections to try and get the highs down, I'm even doing them through the night, as I check in the middle of the night to see if the insulin I've injected is working and some days, it feels like I'm doing one constant jab, the other problem I have is I don't get the signs of being high untill my blood sugar is into the 30's, lucky enough I'm not getting that high. I'll give an example did blood sugar 19.3, did short acting jab tested a while later and it had only brought it down to 17, so did another jab in the morning the blood sugar was 17.3, so if I doing something wrong I'd like to know what it is as none of my health team can tell me. I already have that book and the think like a pancreas.Any other help will be gratefully recieved.
 
Hi Julie,

Sounds like you're having a rough time, and yes a pump may well help. You're obviously working hard to try and sort out your highs. I'm not sure of any additional criteria to the NICE guidelines. Just general stuff that your hospital would want you to follow like numerous blood sugar tests and accurate carb counting, which you say you do.

Just a couple of thoughts - when you correct your highs, do you base your correction dose on say, 1 unit of insulin to bring you down by 3mmol/l? I wonder whether you're actually over-correcting so that you then end up having crashing hypos? Because your correction factor may be different for different times of the day too. ie 1 unit of insulin may bring you down by 3 at some times of the day and only by 1 at others.

Are you always high overnight and when you get up or does that vary too?
 
Hi Pickle, At the moment I'm permantly high due to reg cutting doses to get my hypo signs which hasn't worked :roll: it's taking a toll at the moment as I am working on the 1=3, but had thought that it might be the case that it possibly wasn't working. It used to vary, but not so much now. I have read that their might be problems, Lantus which is what I'm on along with Novorapid. I'm wondering if thats not helping the situation either??
 
All sounds a bit mind-boggling. Really hope you get some help from your team. I'd give them a ring if you're really struggling and be a bit pushy (easy for me to say - I hate making a fuss!). Obviously you want to regain your hypo awareness but don't want to be running high all the time in the process. I don't really know what else to suggest. Although I do know that I permanently struggled with my levels when on Lantus for years, and as soon as I was switched to Levemir things got significantly better quite quickly. I know others may have the opposite experience but this definitely worked for me.
 
Thanks Pickle, I know I hate running high as Hubby said earlier medicine is not a one size fits all, which is all I feel I'm getting at points, from my team untill this new reg turned up on my team and who I've seen on the last 2 appointments and who has taken on board what I'm doing and both times I've been in tears, so much so, hubby at last app where he said you need the pump, Hubby put what J do and how it affects him and my kids, when they see a Lucozade or a glucogen kit, which is have you been hypo again, my son is autistic and he knows the signs, where I don't he's 12 my daughter is 7, this has now began to effect them, I have to drive son to secondary school and then daughter to school it's either morning or an afternoon drive twice a week due to hubby's work. I remember when my son was 2, he climbed into bed with me, still with his nappy on when I went hypo in the afternoon and hubby came in at 8pm, my son Kieran went to sleep with me in bed with his fingers in my mouth untill hubby came in. Lucky enough I have never done that since. But I'm either high or in the lows despite what I do. I mean I'm also a beaver leader (6-8) year olds and I've got my DC saying she wants me to do my nights away course, but I either have to drive 16 miles to Canterbury or 100 mile round trip to Maidstone at the moment I'm relying on other groups to do joint sleepovers, for my beavers. As I don't want to be ill as it's basic first aid run on training courses and like at the moment with my diabetes team I feel caught beteween the devil and the deep blue sea. I have always been told Lantus is the best thing, I'm now starting wonder. Thanks for taking the time to listen, I think all diabetes teams need to listen, they just don't always get it. :(
 
I really feel for you. Living with diabetes day in day out with all that comes with it is hard enough when things are going well, let alone when you're really having problems with control. And being concerned about your children. I really do hope that the new person on the team who you've seen, helps you more and can maybe talk to you more about a pump. But you're right - there aren't that many in the medical profession who really 'get it' and how complex it is. Very few of us fit into those textbook rules and formulas. Keep at it, and keep asking for help. Hopefully you'll get the support you need to gain some more control x
 
Hi Pickle, can I ask you a couple of questions, hopefully you might know? if I am offered a pump can I chose 1, they can't tell me that they only offer 1?. What pump do you use and do you use human or analogue insulin in it??
 
Well I wasn't offered a choice of pump, but you could ask if there's more than 1 option. I use the AccuChek Spirit Combo pump which comes with a blood glucose monitor. The monitor connects by bluetooth to your pump meaning that you can operate the pump with the handheld monitor without having to get your pump out each time. The glucose monitor also has lots of features to work out how much insulin you need based on your blood sugar, what you're eating and if you've still got insulin working from your last dose. So it's really great in my opinion. I use Novorapid in the pump which is an analogue insulin. I was using this prior to the pump too and got on well with it. You do not need a separate background (basal) insulin with a pump. I don't want to bombard you with too much info but please ask if you want to know anything else.

Obviously these are just my opinions/experiences and I'm sure other's would differ :)
 
I found on one of the posts on this board a training programe from Accu Check, on how to use the pump you have and to me it looks pretty good, and if I'm told I can have one, I think thats the one I would ask for as it looks easy to use. How easy is it to fill the cartridge? and can you get pre filled cartridges as well or not? also do you use the hard canula or the soft?. I have already spoken to the maker of the spirit, to find out what the costs are and it works out to be roughly £98 a month from what I can gather, which don't look to be that bad.
 
Julie1471 said:
I found on one of the posts on this board a training programe from Accu Check, on how to use the pump you have and to me it looks pretty good, and if I'm told I can have one, I think thats the one I would ask for as it looks easy to use. How easy is it to fill the cartridge? and can you get pre filled cartridges as well or not? also do you use the hard canula or the soft?. I have already spoken to the maker of the spirit, to find out what the costs are and it works out to be roughly £98 a month from what I can gather, which don't look to be that bad.
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Julie I think different hospitals have different rules but we were offered a choice of pump. Our DSN met with us and brought along several pumps to look at. We had in mind which pump we wanted but after having an opportunity to play with the pumps and work through the menus we actually had a change of mind and chose the other pump. If possible see if you can physically see and play with the pumps to help you decide which one to go for. I'm sure you'll be delighted with whichever one you choose, they more or less all do the same thing give or take a few features here and there. I hope that pumping works well for you, it's been a godsend to us and I would never want to return to injections for my daugther. She loves the pump and there's no way she'd part with it now, it's made a big difference to all of us as a family.
 
Julie
I'm not a T1, but my husband is.
He's had an iffy level of control over about 35 years and now has some severe complications. I have nagged him into reducing his carbs [and his insulin] and he's so much better, that last visit to the consultant, when he asked about a pump, he was told he doessn't qualify, because he's too well controlled on MDI, basal and bolus.
Have you looked at your diet?
Perhaps a bit of adjustment there might help. If you do get a pump, you'll need to count carbs anyway.
Hana
 
Hi guy's, thanks for the response. I would have liked to be able to go to a pump road show, but their aren't any in my area, I would really like to be able to look at them before making a choice, but I also think I would take hubby with me as well, just in case my brain frooze, and I forgot what questions to ask :roll: .

Hana, I already carb count and have reduced my intake of carbs as well, and it still hasn't worked, I've even got the Carbs & cals app on my phone, just in case we go out for a meal, not that I do any more as my diabetes is so un stable.
 
Julie1471 said:
I found on one of the posts on this board a training programe from Accu Check, on how to use the pump you have and to me it looks pretty good, and if I'm told I can have one, I think thats the one I would ask for as it looks easy to use. How easy is it to fill the cartridge? and can you get pre filled cartridges as well or not? also do you use the hard canula or the soft?. I have already spoken to the maker of the spirit, to find out what the costs are and it works out to be roughly £98 a month from what I can gather, which don't look to be that bad.
Click to expand...

It's pretty easy to fill the cartridges once you get the hang of it, but no you can't get pre-filled ones. I use the hard cannulas and find these fine - haven't tried the soft ones as I have no probs using the ones I'm on at mo. Are you having to fund the pump yourself then? If you 'qualify' and have had one offered to you then surely you don't have to foot the bill?
 
At the moment Pickle I'm looking at all options and I rang Roche, just find out how much it was. As I was offered one 12 years ago, but couldn't accept it due to the up keep costs of £500 a year, due to having a baby on the way and the cost of clothing and and everything that goes with having a child. If I could have afforded it I would have jumped at the chance. I wish at points I could turn the clock back to that appointment, but hey ho. But as I have said I got the carrot waived at other appointments but have never got to the point of going onto the next stage.
 
Ah I see, well if you decide to go for it this time if they've offered it to you officially again then it shouldn't cost you anything. I hope you go for it (although obviously your decision and everyone's different) - it really could change your life. It's changed mine!
 
Julie I really can't see how they could possibly refuse you a pump after what you have described. The current problems are affecting you and your family's quality of life, I think you have every reason to be offered a pump and I'd seriously push hard for one if they are reluctant. If your clinic still don't think a pump should be offered to you perhaps research other clinics in neighbouring counties, there may be a more pump friendly clinic which will be more supportive. You have patient choice about which clinic you go to and if it means moving clinic to make quality of life better for you and your family then don't hesitate.
 
Thanks Pickle & Sophia, when I've been to previous app I've been told try this then we will look at the pump and this has gone on for the past 15years as hubby said to the reg on the last app and we've done as they have asked and on the next app it's been well try this and if that does not work then we will look at the pump. But the new reg has moved it onto the next stage by saying the pump is a viable option for me as I have done all that they have asked, but it hasn't worked. So at the app he said he would go to my diabetic Dr and if he did not agree go to the other diabetic team, and he would write a letter to the diabtes nurse, but I have read a report on the input site into pump take up in the Uk, and if it's the right pct, my pct is failing Nice guide lines on pump therapy by 97%. But I need to find out which Pct my hospital trust comes under. I hadn't thought of that one Sophia I had thought about going down the Endo route and getting a private consult.
 
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