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New to the insulin pump

K

kellie lees

Well-Known Member
Messages
67
Type of diabetes
Type 1
Treatment type
Insulin
My husband has had type 1 diabetes for just over two years now and he is just talking to his diabetic nurse about getting an insulin pump.
He is currently using the freestyle libre so hoping the two will link up and his control is fairly good with all of his hba1c being in range.
The reason for the pump is that his readings are a little spiky and they are hoping the pump will balance it out more.
I’m sorry if we appear naive to it all - but we are! We are just looking for some advice from people living with it and not from doctors if that makes sense. And also some help with the kind of questions we should be asking at the initial appointments
Thank you
 
Hi @kellie lees

No questions are naive, everyone has to start somewhere. With regard to resolving spiky BG's the pump should resolve that as the background basal can be set at different levels throughout the day to cope with your body's different needs. Most people find it helps best with night times and what's called the dawn phenomena where your body needs the insulin adjusted a few hours before you wake up, something the injected long lasting cannot cope with.

Ask your diabetic nurse what pumps are available (it can vary depending upon where you live), once you have these then you can search here for feedback or ask questions.

There are basically two options a patch pump where the whole unit is stuck on your body or one where the pump is on the end of some tubing.

My personal opinion is - go for the pump - I've been IDD since early 70's, it took me maybe 8 yrs to agree to move onto a pump after I was first offered, I should have moved on day one
 
Hi, @kellie lees , I'm on mdi, so can't help with the pump issue, but I see you say he is on libre.

If he's got a kindle, I'd highly recommend getting a copy of Sugar Surfing by Stephen Ponder. He's an American endo and T1 who has been using cgm from the early days.

Standard NHS treatment can be very conservative, because it's largely based on people using strips, which give very limited insight into what bg is doing.

Now that libre and cgm is becoming more common, a lot of us are playing by different rules, and it will take a bit of time for the "official" view to catch up

Official courses like DAFNE will say things like, "don't test between meals unless you feel hypo, and save corrections till your next meal if too high." (the DAFNE course is good, though, would strongly recommend him getting on that)

That's all well and good on strips alone, but with libre, when we can see bg starting to rise too high between meals, that's a good enough reason to say, ok, I got that meal bolus wrong, if I leave this, it'll end up at 12 by my next meal, then I'll have the bother of dragging a too high bg down as well as trying to bolus for the next meal, so why don't I just fire in another 1 or 2u correction now to save it getting anywhere near 12?

The basic idea of Sugar Surfing is to look at libre/cgm output regularly so you can then gently nudge and steer bg levels with a few dextrotabs here and a unit or two there long before they get anywhere near out of range.

I got libre about 3 yrs ago, read Sugar Surfing a few weeks later. The techniques it describes played a major part in me being able to smooth out my bg levels.

The author isn't some left-field crank, he's recommended as further reading on cgm by some NHS hospitals.

Libre is pretty good on its own, but many of us are using a small transmitter called MiaoMiao, about £160 one off cost, which reads the sensor every 5 mins and sends it to a phone app, xDrip+, to get "proper" cgm. It's a really useful tool in being able to see what's going on with bg, which makes it a lot easier to smooth levels out.

Good luck!
 

Thank you. We have found that my husband is waking up every night at around 2am - he isn’t having a hypo but just waking up at this time and I think this is because he has too much insulin in his body during the night time and (12-4am) and so his body isn’t fully relaxing? Does that even make any kind of sense? And if so I think he will really benefit from the pump!
Thank you for your reply it really helps us
 

Thank you so much. We will look into the MiaoMiao definitely and source the book. We were lucky that my started using the libre quite soon after his diagnosis (as it came as a huge shock) so the libre making life slightly easier was hugely beneficial. He’s done the DAFNE course and we had to take some of it with a pinch of salt ‍ thank you!
 
Hi @kellie lees,

First up, welcome to you and your husband to this site.

There are a number of us have been on insulin for more than 30, 40 or 50 years.
And on insulin pumps for some of those years !!!
And we come from a number of different countries.

Are you and your husband in the UK? That matters as the accessibility to pumps and
choice of pump etc varies from country to country.

I am from Australia - been on insulin for 52 years, 6 1/2 of those on an insulin pump.
I have never used the Libre - but have tried one of the Continuous Glucose Monitoring ones(CGMs)
which connects remotely to my pump.
I am not sure that Libre can link with an insulin pump and leave that to those expert in such matters
such as @tim2000s.

I was placed on an insulin pump due to difficulty managing night-time hypos despite 8 plus insulin
injections of short (bolus) and long (basal) insulin per day.

No diet known to me then helped either. The pump helped stop hypos and improved my diabetes control.
For example the rise in BSL at around 3 to 4 am in the morning mentioned by @Chas C (see Home page
go to question box - right upper corner - type in Dawn Phenomenon) can be controlled by programming the
pump to infuse more insulin to deal with that - and without me having to wake up to deal with it.

Having said that, there are some realities about pumps to consider:
some of us have trouble with the cannulas - the needles that reside under the skin (just like the needles in the
Libre sensors) but these ones allow insulin to be infused. Any kink, bending of the cannula can stop the infusion.
People who are thin seem to have more difficulty with this as the cannula may hit muscle etc.
Infusion stops or is slowed and BSLs go up - I become
prone to ketones developing much quicker than when I was on multiple daily injections. Since moving to metal
cannulas this problem has been far less.
pump failures - I have never had a pump fail - but it does happen and there have been reports of some people
having up to 4 (one and then 3 replacements) fail before changing brands.
Others with the same brand have had sterling service from them.
Not a total panacea: despite the wonders of the pump my BSL control was not optimal. The DAPHNE approach
did not work for me nor for that matter did any diet approach in the past 50 plus years).
It was only by going to a Low Carb High Fat diet that I obtained the BSL control I craved.

I would suggest you look at all combinations of pump and diet regimes: ask on here for references to articles etc
if you need them, ask your health team and be fully informed so that you can (both) make the best choice.

It is tricky to know exactly what you wish to know further without going into pages of text here.
But know that you are both welcome to ask whatever questions you wish and learn at whatever pace suits you
- we have all asked the seemingly obvious questions so no question is ever too simple or obvious to ask.

Best Wishes and please bring on the questions for us all to provide our experience and
what we have learned from our mistakes.!!

............. ........... .............
 
I transitioned to the pump 3 years ago after 12 years of injecting.
The pump can be frustrating: mostly because I am a vain woman who hates to have my diabetes on show but also the time it took to set it up, the fear of it going wrong and the extra paraphernalia I have to take with me when I go away. However, I would be very distressed if I was told my pump was going to be taken away from me.
The main motivation for the pump was to manage my BG when exercising but the ability to adjust the basal profile for different times of the day (and different types of exercise) is great. It is also great when eating larger meals (I found no need to change my diet when I changed to the pump) by allowing the bolus to spread over a period of time rather than having to do multiple injections.
The pump is not an easy option - you still have to count your carbs ... I was told I would have to be more accurate with my counting because, unlike when injecting, I have no "spare basal" in my body during the day ... you still have to diligently measure your BG and there are more things you can tweak, adjust and get wrong.
To my knowledge, the Libre does not talk to any pumps so there is no option of a closed loop system with the Libre. But the Libre can still be very useful, especially the trends, to adjust basal levels for different times of the day.
Talking of Libre - the Miaomiao mentioned above is used by quite a few people on the forum. I am definitely considering getting one but ... Libre v2 is due out soon and it has some differences such as a Blutooth alert and data encryption. The Miaomiao uses freeware phone app which will need to work out how to decrypt the Libre v2 data. Therefore, I am holding back from buying a Miaomioa until Libre v2 has been out for a while and the app developers have overcome the data encryption and any other foibles in the new Libre.
 
Last edited by a moderator:
HI @kellie lees - just confirming what the others have said. The Libre doesn't connect with any current pumps, regardless of whether you add the little transmitter that @Scott-C mentions.

In the future, Bigfoot plans to use a next gen version of Libre with their artificial pancreas system.

The other alternative is to get a Tandem T:Slim X2, which you can use with Dexcom CGM systems. It's a relatively new pump in the UK, but seems to be very popular, or you could look at the Medtronic solutions that have their own (very expensive) CGM system, which gets variable feedback from users.
 
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