I want to change onto a pump, advice?

Status
Not open for further replies.
S

saruh

New Member
Relationship to Diabetes
Type 1
Hiya 🙂 I'm Sarah. I'm 23 and I was diagnosed with type 1 diabetes when I was 8.

When I was diagnosed I was on two injections a day, and for a child ate really healthy! I remember having hypos but overall my blood sugars weren't bad.

once I hit my teens, a mixture of factors lead to my blood sugars being out of control. Diabetes team put me onto humulog and lantus. I never got on with lantus and was switched to levemir. however there was never a great improvement in my control. I upped the amount of blood glucose tests but whatever insulin and food would produce perfect results one day, would produce extreme highs or lows the next. my nurse and me were at a loss.

I stupidly literally gave up for a while. Sick of sticking to the same foods daily, struggling with carb counting I would go weeks without testing and guess my insulin.

a year or so ago after hba1c results of 12 or 13, and as a 22 year old experiencing nerve pain know my feet... it was a wake up call and I got serious about sorting my diabetes out. testing more up to 10 times daily, eating healthy and working with my nurse.

I thought as an adult my levels wouldn't be so erratic, I thought the efforts I put in would equal reward, for once. A year on I'm still struggling with a hba1c of 8.9. I am serious about being healthy but I'm fighting a losing battle. I also suffered a scary, severe hypo in my sleep two weeks ago, I didn't wake up for work (I was unconscious) so ended up getting an ambulance to resus.. that's the first time I have been unconscious but I have multiple hypos a week.. ontop of my high hba1c.

since pumps became more known in the UK I've been interested.

How did those using pumps get onto pump therapy? does it depend on where you live (I'm in Surrey) lr is there criteria? and lastly if the nos won't fund, how much is it to fund yourself and is that a possibility?

thanks for your help!
 
Last edited:
Hi Saruh. welcome to the forum 🙂 I'm not on a pump, but I'm sure some of our pumpers will be along to share their experiences soon. I would suggest having a look at the INPUT website, which is a great resource for people interested in going on pumps:

It sounds like you are trying really hard to get things under control, and you might benefit from being able to set different basal doses for problem times of the day and night, something you can't really do on lantus or levemir. Pumps are not magic though, and do require a lot of work, especially to begin with. They do offer lots of features that would be tricky or virtually impossible on injections. 🙂

If you want to read up on what pumping insulin entails, I would suggest trying to get a copy of the book Pumping Insulin by John Walsh.
 
Last edited:
There are 3 possible criteria for getting an NHS pump - you only have to meet one - plus your Consultant has to recommend it.

These are

(from http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/


NICE criteria, Technology Appraisal 151 (2008)

Only applicable to type 1 diabetes (there is insufficient evidence to routinely recommend pumps in type 2 diabetes, except for individual cases)

? Under 12 years old: MDI is inappropriate or impractical

? Aged 12 or older: hypos occur frequently or without warning, causing anxiety about recurrence and a negative impact on your quality of life
OR your HbA1c is still 8.5% or above despite carefully trying to manage your diabetes, including the use of Lantus or Levemir


If you meet the NICE criteria and your consultant recommends pump therapy, the Clinical Commissioning Group (CCG) cannot refuse to fund it on grounds of cost


The main 'personal' criteria for using a pump once you get one, is your ability to calculate carbs and the correct insulin doses for them and your ability to keep records - although a lot of pumps/meters actually record this for you now from what you input into eg the bolus wizard. And to become expert at spotting the root of any problems. (eg it would be no good reducing your basal at the time the hypos always occur, has to be an hour or usually several hours, prior to that time. These are things that you can only suss out with time!)

Good luck.
 
Hi Sarah, i love my pump & would not give it back. It is so much easier to bolus with a couple of pushes of buttons. You can put Temp Basals on & trim it to suit the day you are having. It takes a while to sort but really worth it. Good luck getting one 🙂🙂
 
Hi Saruh , I've been pumping for 3 years now I got mine because I have hypo unawareness , i read about your night time hypo how scarey , do you normally get warning signs ? I live in London .
 
Hello Saruh

I use a pump because of hypo unawareness. I was suffering hypos where I needed help. Because of my hypos I was trying to keep my blood sugar higher so despite my efforts I had a stubbornly high HbA1c.

Trying your best with MDI, experiencing severe hypos and having a high HbA1c that you can't reduce by much should be good reasons for considering and being considered for a pump. Discuss how it might help you with your diabetes team.
 
Have you done basal tests recently? If not you ought to do it pdq.
 
Thanks for the welcomes and replies 🙂 I look forward to reading and replying to threads!

Flower said:
Hello Saruh

I use a pump because of hypo unawareness. I was suffering hypos where I needed help. Because of my hypos I was trying to keep my blood sugar higher so despite my efforts I had a stubbornly high HbA1c.

Trying your best with MDI, experiencing severe hypos and having a high HbA1c that you can't reduce by much should be good reasons for considering and being considered for a pump. Discuss how it might help you with your diabetes team.
Click to expand...


Thanks for your reply, how you were prior to having the pump sounds a lot like my life. It's so frustrating, I am really anxious about having hypos and not realising, especially since waking up in resus a fortnight ago. I think my high hba1c isn't helped by my worry of hypos, I think I do let my blood sugar run higher because of this.

I have a horse and i do compete in show jumping frequently and ride a lot. A lot of people don't realise how strenuous riding can be - and It's a bit of a catch 22 at the min. I seem to purposely allow my blood glucose to run higher before exercise or eat too much prior to exercise, which in turn makes me feel lethargic and a bit rubbish and not able to exercise to my ability. I do blame high blood sugars for not performing as well as I could with regular sugars and i do feel I let my horse down in these situations.

That sounds like a rubbish reason to get a pump, but i really am fed up of trying hard and getting nowhere with my diabetes. Turning down meals with friends cos i find it easier eating the same boring foods every day. It's not all diabetes related but i also suffer with anxiety and depression. I've been on so many meds for this and the deflation I get from fluctuations in blood sugar don't help. It's also affecting my job - I had to have a day off when I had a hypo and a month previous I had 3 days off with a sick bug which led to ketoacidosis - I really get sick with sick bugs and ended up in hospital. My work (pharmacy) gave me a written warning for this as I'm in my probation period of the new job. I as at the end of my tether.

I have done basil tests in about 6 weeks. I'm definitely going to again this week coming as i have 3 days hol off work which makes it easier. Last time i learn to lower my levemir from 23 units at night to 21, this helped stop hypos in the morning apart from my unconscious one which I think was due to overestimating a evening snack and giving too much short acting.

I'm not sure now if I'm not on enough levemir because even without food my blood sugar is usually 13ish, I've got used to this which i know isn't right.

I've actually recently moved back from Northumberland, and am waiting for an appt with diabetes team in Surrey. I've spoken to my gp about things without mentioning a pump, she suggests "making things simple again and going back to two injections a day". What are peoples views on this?? Will this not restrict my diet further?

Also as an adult, who looks after your diabetes? I think I'm booked for a DSN to manage everything - no consultant involved ever.
 
Ah and one more thing to add. I obviously had a severe hypo in my sleep, but i do often have bad (sugars anything from 1.0 to 1.9) bad hypos...I'll usually manage to treat these hypos alone, like a lot of people on here I expect I'm used to having to deal with it since childhood and know the only way to fix it is to drink something sugary etc. There have been timeee I've been too faint to move and people have had to get me a drink and straw.

I hate that. But I'm also too scared to admit this to professionals in fear my driving licence will be taken. I always test my blood before driving and once an hour in the car because I have learn I find it harder to spot hypos sitting down (in the car or on my horse It's harder to notice). I know I'm safe while driving and don't want to incriminate myself by admitting I have had bad hypos!

I know a pump doesn't = no hypos but i would like to think if I put work in would help.with the highs 🙂

Sarah x
 
Look at Runsweet.com for ways to control during exercise it has most sports up and will give you a starting point to get better control
 
From the sound of it I would have thought you fit the criteria for getting a pump. But it can be a bit of a lottery with the Diabetes team you're with, funding constraints and their experience as to how eager they are to get you one.

I moved from Glasgow to London a couple of years ago, whilst my team up there often asked what I thought of going on to a pump but I never really liked the idea. I would have had to change teams as they didn't have the expertise at that time, which I didn't want having got to know them. I was also very resistant to the idea of being attached to something all the time.

However when I moved down to London I had to change team! When the DSN I saw suggested a pump I surprised myself and said yes. I really liked the way she talked to me about it and about the pros and cons of her and other patients experiences. All helped as she is a pump specialist. So when she told me about the wireless Omnipod pump I was sold - and think it is amazing.

In my short experience (4 months or so) I would agree with your last comment about it definitely helping with the highs, and that it doesn't = no hypos!

My HbA1c has gone from 8.6 to 7.8 since using the pump (was 9.2 first time I saw new nurse, but that was not helped by moving...)

On your question about who looks after you I have always relied more on the nurses than the doctors. I have seen a couple of good doctors over the past 12 years since being diagnosed. Most have been pretty average and don't seem to have the time/inclination to go through what I want to know about rather than what they want to impress on me! I think I have rarely felt relaxed with a doctor whilst I do with the nurses.

Good luck 🙂

Natasha
 
Hi Sarah, like you i am allways doing different things you on your horse me on motorbike, mountain bike. There is a bit trial & error but a pump is so so much more adaptable. Temp Basal ? You push in how long & what %. If you are going out on horse for an hour then turns out to be 2hrs ?? You are in charge & not the INSLIN you put in by mdi. Get one & see how much better they are for people who dont sit still. 😎😎
 
Friend in Croydon has a pump, his clinic are really fans of them and are jolly good with MDI too.

I discuss everything with DSN really, she's less likely to panic or be judgmental than the consultants.

What are you doing about correcting for the effects of the anxiety? Because I was correcting 1u to 3 mmol/L and would then go VERY hypo, and guess what, I also got into trouble at work, lack of concentration etc so I wasn't as productive as I should have been. I was under a certain amount of stress anyway - family stuff, they won't go away LOL but they weren't there all my waking hours and I'd always coped with it before. The mere word 'work' could cause me a panic attack ......

DSN came up with the gem that I should try halving every correction for any high BG that I felt stress had contributed to.

In other words if you've guessed the carbs for something and are aware you might have been wrong (we all do it!) and it wasn't a particularly stressy day, then do a normal correction. otherwise half.

Sounded potty, but hell, what I was doing sure wasn't working so let's give it a try.

To begin with I halved every correction because I couldn't judge what fell into either category really.

It only worked ! It did mean that I had to run at a higher BG than I really thought I wanted to, because of the times it was over-eating/under blousing - but at least I was a lot more stable and that was a tremendous relief, which actually started to help with the mental health thing as well as the diabetes. I also bought a decent set of digital 'add &weigh' scales and di all the maths properly - most times. After a few weeks, I could identify which was which.

We were both absolutely delighted. I love her to bits!

My advice generally is to be absolutely honest with your DSN - how can they help you properly if you don't tell them all of it? Mine is insistent that anything under a 4 needs treating and although I'd always pooh poohed that, knowing for a fact that clinically it shouldn't definitely affect your brain till you are under 3.3 - so I never really classed anything above that as hypo. In my case it turned out to be 100% true. And still is.

So you could possibly ask 'Could I talk to you about hypos, please - but off the record?' However be aware that when an ambulance comes out to you, all sorts of people get a report on that (my GP astonished me once by waving an ambulance report at me when I went in about me menstrual problems!) and if it's the same hospital although your full diabetes notes will only be in the diabetes clinic, your general hospital notes won't be and in any case, they could already know if they have a good info-sharing system set up there.
 
Ahh you have all been SO helpful I really appreciate it 🙂

Trophywench - I'm not glad to hear you've had problems at work, but it is comforting to know I'm not the only person to have diabetes related problems with work. Id HATE to use my diabetes as an excuse for anything, I don't like mentioning diabetes in RL unless I have to. But I was starting to feel like I'm just rubbish at my job. My previous job before I moved wasn't stress free. Not so much diabetes problems, there was an incident with a senior collegue.. I ended up having panic attacks at work, signed off with stress and splitting up with my boyfriend and moving 300 miles back home!

High blood sugars where i get stressed I think i do over compensate with insulin. To be really honest there's been many times I'll dial up a random unknown amount and injection 'just to get my blood sugar down..' not even noting how many units. I know that's ridiculous and often the cause of my levels yo-yoing but at times I didn't care at all. I do now though but I'm still trying to work out how many units I need for what.

That is scary about ambulance reports! Luckily that's the one and only time It's happened, although I do sometimes wake up hypo, but any less units of levemir lead to hyperglycemia which is frustrating!! I don't know what to do. I usually eat before bed and even if i do no humulog I can go hypo, I feel so stupid and inexperienced in correcting my own blood sugars It's frustrating.

My local hospital is the royal Surrey which according to INPUT site does offer stumps to children and adults if suitable. I'm not sure if my nurse is just at ky gp surgery, if it is I'll be asking my gp to refer me back to the hospital.

HOBIE - I'm glad to hear from an active person who recommends the pump 🙂 I'm definitely going to research more before my first appt with the nurse since moving back. Thanks 🙂
 
DO talk to INPUT as well - they may know useful info, like who is the main pump consultant and who is the pump DSN. Then once you get a hospital appt come through, you can ring the clinic up and ask to see the right person !
 
Hi Saruh,

This all sounds hard work for you atm.

How do you bring your blood sugar down to normal when it is high?

When I have a high blood sugar, I consider how much food I have already had, how much insulin may still be in the back ground (unused), and how much I would need - to bring it down to around 7 and no more(!) to avoid a hypo. I use 1Unit to bring it down by 3mmols - meaning that if it is 17mmols I would take 3.5 units of novorapid which would bring it down to 7.5mmols.
 
Last edited:
Just thought - have you done DAFNE or similar course? If not you should ask for one, or if you had, you'd know what Joules had said already!

You still need to basal test though LOL
 
As trophy said, some kind of educational class/course would be beneficial if you haven't done so already.......

Its not the same everywhere but my pump clinic requires all pumpers to have attended DAFNE, with some minor exception for people having hypos etc......🙂
 
Hey

You should defos give the pump a go. Im 23 and got the pump 3 years ago. It makes your life so much easier. I recently had a break from the pump and lasted 2 days without it then wanted it back. Made me realise how much like rubbish I felt when I was on MDI and how many hypos I had!!

Defos worth a shot and if you dont like it you always have the jags to fall back on.

Here for a chat if you would like one 🙂 xxx
 
Status
Not open for further replies.
Back
Top