New member & New to a pump

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SamByTheSea

SamByTheSea

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Relationship to Diabetes
Type 1
Hello everyone, i'm new to this forum and in much need of some advice, but let me introduce myself a little first. Hope it's okay to post this here.

My name is Sam and i have been a type 1 diabetic since i was 14 months old. I'm now 43. Thankfully no serious complications as yet and i'd like to keep it that way for as long as i possibly can, Hence why i decided to give an insulin pump a try. This is where i need some insight and a little advice.

On September the 18th i started on the Minimed 640g insulin pump and the first couple of days seemed to be going really well, but since then my glucose levels have been all over the place. During the day they can vary between 10.0- 12.0 but it's at night and while i'm sleeping they can go up between 12.0 - 14.0. Last night i tried a temp basal and raised it by 10% which i understand isn't a lot but thought i'd try it slowly to start with but it did nothing to lower my levels. At 1.30 this morning my glucose level was 13.2 did a correction bolus and managed to get it down to 6.2 after a couple of hours, tested it again at 7.30 and it had gone up to 9.2 then tested it again before i had my breakfast at 9.00 and it had shot up to 14.5

My active basal pattern is currently:
00.00 - 0.300 0.400 U/hr
0.300 - 0.800 0.475 U/hr
0.800 - 15.00 0.275 U/hr
15.00 - 19.00 0.300 U/hr
19.00 - 24.00 0.350 U/hr

I'm due to contact my specialist nurse sometime next week to discuss how things are going and email her my carelink reports but when i phoned her last week with a few issues i felt a little, well i guess inadequate i suppose. I feel she thinks i should automatically know what i'm supposed to be doing. Maybe i should be. I guess it's still early days yet and things will fall into place eventually. I want to love my pump and to feel that i've made the right decision, just feeling a little despondent at the moment.

Thanks for reading. Any input would be great.
 
Hello Sam and welcome to the forum.

1st buy the book pumping insulin by John Walsh that's the pumpers bible 🙂
Basal testing is a must.
There's a link at the top of the page so have a good read.

Looking at your basal pattern it looks to me as if you need to add some more time slots in to accommodate your basal needs.
So set it up with 2 hourly slots to start with any changes you need to make then make the change 2 hours before they are needed.

So if after doing some testing your results show you are out of range at midnight then increase at 10 pm and so on.

Have patience Rome wasn't built in a day you will get there.
 
Hi Sam, welcome and I'm glad you have found us. I started on the same pump last November and it has been worth it, but it is hard to get right at first. If you're like me, the DSN and rep helped me set up starting basal rates based on my MDI doses and typical patterns, but I had to tweak these quite a lot. Like you I don't need much basal, but in the end my daily rate varies from 0.375 to 0.9u/hr. The first few days probably went fine because you still had some of your old basal insulin in the system. I suspect you just need to up your doses, it is scary but worth it when you get it right.

It's helpful to do some basal testing https://integrateddiabetes.com/basal-testing/ and keep fastidious BG and food diary in the first few weeks while you tweak stuff and get things sorted. I started with the morning basal as when I skipped breakfast I found that my BG went from 7 to 16 without me eating anything! So now my highest rate is from 7am til 9am. One tip is that if you identify a rise, you need to adjust the basal rate 2 hours before that rise started. So if you rise from 9am, adjust from 7am. I got a little paper log book in the box with my pump and that was very helpful for spotting where things went wrong.

Do you have a Freestyle Libre? I self funded a few in the first months and it was really helpful to spot overnight trends without needing to set alarms for the middle of the night. Asda pharmacy is the cheapest place to buy them if you can't get your GP to prescribe them.

A helpful book to buy is https://www.amazon.co.uk/dp/B06XCDTPP1/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1 , I read it cover to cover and learnt lots about diabetes and how to best use my pump for things like fatty meals and exercise.

Good luck and stick at it, do talk to the nurse and get her advice too, you shouldn't be made to feel inadequate, but to be honest I learnt more from this site and that book than from my nurse, we're the ones living with it after all!

Best of luck!
 
Hi Sam I started on the 640G last December and like Pigeon had to do some tweaking to get things 'right'. The rep and DSN when setting it up used an algorithm to create the basal patterns from my then TDD (Levemir and NovoRapid) and my weight. I found they underestimated overall, not by a lot but the patterns also weren't quite right. I would guess your basal needs adjustment, once that's done your bolus settings may also need tweaking. It allows you to copy your current basal pattern if you just need to adjust certain parts but want to keep the original. The first week or so I found I was in the 16s and 17s on occasions but just had to keep plugging away, once the basal was sorted everything kind of fell into place. The book Pumping Insulin that Sue mentions is excellent. Keep at it, speak to your DSN and although it takes time it's definitely worth it. 🙂
 
Thank-you so much for all your replies, i really appreciate it.
I have gone ahead and purchased the two books that you recommended, so thank-you for that. I'm going to start my basal testing tonight. It's my nighttime basal i feel i'm having the most problems with so that's the one i'm going to tackle first.
@Pigeon Unfortunately i don't have the Freestyle Libre. Tried to get it through my GP but that was a no go, but thiers a slim chance i may aventually get one through my hospital clinic but i might purchase some sensors just while i get my basal patterns sorted out.
@Matt Cycle That's exactly the same way my DSN & rep set up my basal patterns and like yourself i feel they've completley underestimated my basal pattern needs.
I'm sure i'll get there eventually. Once again thank-you for all your advice and input.
 
Welcome to the forum @SamByTheSea

Just to reassure you that it is perfectly normal to have a rough few weeks when adjusting to pump therapy. If anything I think slightly underestimating is a deliberate strategy by clinics. Pump infusions are typically much more efficiently absorbed than MDI injections, and some people find they need significantly less insulin than their MDI TDD. If anything running slightly high for a week or two is the easier of the two options. Coping with adjusting to pump therapy while crashing into long nasty lows all the time would be a nightmare!

As others have suggested, spend some time experimenting with basal tweaks first, then move on to bolus/corrections and all the other pump goodies.
 
We all love our pump to begin with then hate the loathsome thing for a while, before we land up loving it again. It's bonkers using algorithms when you actually consider it - who the hell's body behaves exactly like it says in the textbook? Answer - nobody that I know ! Every single one of us is different.

Don't feel your DSN expects you to just know stuff - how the heck can you know when you haven't been taught? This is the main prob with changing from MDI - MDI became so 'normal' that changes became instinctive. Suddenly - all intuition is gone - and makes us feel as bad as being diagnosed in the first place was. Lost, alone and unloved...….

The best thing I can tell you is that it does absolutely get better, with time - both you and your clinic, but especially you - have to give yourself sufficient time to get to grips with it again, that's all. Just be patient - this IS a marathon, not a sprint - remember?
 
Thanks for your reply Jenny.
I think that's half the trouble with me i'm expecting too much to soon and hoping to get instant results straight away which i understand is a ridiculous. I guess i'm being to hard on myself and being a little impatient. I know i need to give myself and my clinic plenty of time and things will fall into place eventually.

Thanks again everyone for your replies.
 
Welcome Sam. Well done for being T1 so long. I Love my 640. So adaptable what ever you are doing. As said have you tried a Libre because it gives 24hr info on your bg. Good luck 😉 Hope your feet don't get wet from the Sea :D
 
Thanks HOBIE 🙂
I want to love my 640 too, and i'm sure i will once i get my basal patterns sorted. I'm definetely going to give the Libre a go, purchasing some sensors today if i can.
My feet are going nowhere near the sea at the moment brrrr!! far to cold, but you still get some fools that will go swimming down here in the winter months. Best of british to them i say o_O
 
Hope you get in well with the Libre @SamByTheSea 🙂

I’m not sure what the current situation is for new customers. Occasionally Abbott have had to take breaks in accepting new orders because demand has been so great. Hopefully you will be able to get hold of a starter pack soon
 
everydayupsanddowns said:
Hope you get in well with the Libre @SamByTheSea 🙂

I’m not sure what the current situation is for new customers. Occasionally Abbott have had to take breaks in accepting new orders because demand has been so great. Hopefully you will be able to get hold of a starter pack soon
Click to expand...
They are not taking new customers at present but you can register and they will let you know.
 
SamByTheSea said:
Thanks HOBIE 🙂
I want to love my 640 too, and i'm sure i will once i get my basal patterns sorted. I'm definetely going to give the Libre a go, purchasing some sensors today if i can.
My feet are going nowhere near the sea at the moment brrrr!! far to cold, but you still get some fools that will go swimming down here in the winter months. Best of british to them i say o_O
Click to expand...
Seriously I used to be in the North Sea 3 times a week. Mad even in the middle of winter. Sea warm outside the water very cold 🙂
 
@grovesy Tried to set up an account earlier today but as you said they aren't currently taking on new customers at the moment. I've registered with them so fingers crossed i'll hear from them soon.

@HOBIE I think you were very brave then o_O
 
@SamByTheSea can you not have the transmitter and sensors that go with your pump as you already have a built in receiver ? I've no idea of the cost difference so just a suggestion for you to look into.
 
SamByTheSea said:
@grovesy Tried to set up an account earlier today but as you said they aren't currently taking on new customers at the moment. I've registered with them so fingers crossed i'll hear from them soon.

@HOBIE I think you were very brave then o_O
Click to expand...
I registered about 2 weeks ago.
 
If i'm wrong then please correct me but i believe the Enlite sensors would work out a little more expensive in the long run as you have to order either a box of 5 at £275.00 or a box of 10 at £525.00 then the CGM transmitter on top of that. The CGM starter kit is £490.00. I don't think i'd stand a chance in hell of getting that funded for me, even if it was for a short period of time, but i guess theirs no harm in asking my DSN when i contact her again next week.
 
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