Did anyone else feel like this when starting on a pump? CamAPS/Libre 3/Ypso

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Verity14

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Type 1
Hello, this is my first time posting on a forum so want to say thanks in advance to any one who replies to this!

I’ve had type 1 for 32 years, since the age of 6, and have always been on MDI (lantus and Fiasp for the last few years). I decided to make the leap to a pump back in October 2023 as for the last few years my control hasn't been so good and HBA1c had crept up to 58. I was told in February this year that I had been approved for a closed loop which was a huge (but exciting) shock as I wasn’t expecting this. I have a wonderful diabetes team and decided that the Ypsomed and Libre 3 with CamAPS was best for me. I started the pump in April and of course it has been an enormous learning curve. Physically it’s going ok, it’s up and down (well, mainly low to be honest!) but HBA1c estimate is already 50% so a huge change). However I’m really struggling mentally which is just not something I had expected. I just feel so different, highly anxious most of the time and feel very distracted. It’s so strange as I’m not obsessively checking levels or anything but I think I do feel more ‘out of control’ than I did before. I was warned it’s can be like being re-diagnosed which I think may be a good description, but I just wasn’t expecting to feel so strange. Physically I think I feel better with less ups and downs BG wise but mentally I’m really struggling in a way I didn’t expect to, and find very hard to put in to words. I wonder if anyone can relate to this or has felt anything similar? Thanks again for any advice or ideas!
 
Hi and welcome.

Congratulations on getting an HCL system with your pump, but sorry to hear it is causing you some emotional turmoil. Did you run the pump in manual mode for a few months before looping? Have you considered putting it into manual mode for a while if the HCL is causing your anxiety or even having a short or even longer pump break and going back to MDI. I don't pump, but I beileve @SB2015 had a bit of a wobble when she first started looping and found it difficult to "trust" the system and wanted to keep intervening. I think she went back to manual mode on the pump for a few months before trying again and now she seems to love it. I know when I first got Libre, I needed a break from it every now and then and each time after a week or two I was really appreciative of how much easier and more convenient and reassuring it made my diabetes management and my frustrations with it and anxiety just disappeared. They say, absence makes the heart grow fonder and I certainly found that taking a break made me realise how much better my life is with it. I no longer need a break from it, but is was important for me to do that in that first year, and I am guessing the HCL system could well affect me in a similar way.... especially as I am a bit of a control freak! 🙄
I really think that what you are going through is quite common and talking to your DSN about a possible break might be helpful in reassuring you and resetting your perspective.
 
Welcome @Verity14 🙂 Do you think it’s the loop that’s the biggest factor in you feeling like this? I’ve used a pump (no loop) for more than 20 years. I turned down a loop recently as I felt it would unsettle/stress me. Perhaps what you’re feeling is similar?
 
Hi and welcome. I’ve been on camaps for about 18 months although I have different pump and dexcom six before I moved to the pump I was on MDI and I agree it is a massive change and a very emotional one. I can say that I’m not usually emotional person in public but I bawled my eyes out through my entire pump set up appointment and for a couple of days afterwards! I think one of the things that can be challenging is the idea of handing over control to the loop when you’ve been used to managing it yourself. I don’t think I check my glucose levels less often on camera apps but having gotten used to handing over control most of the time some of the burden has definitely shifted. I think by calling it an artificial pancreas camAPS set an unreasonable expectation because the loop still does require a level of management and it’s about finding a new balance between letting the loop do its thing and keeping an eye on what’s going on. That is a bit of a shift if especially if you’ve been hyper-vigilant on MDI ( I certainly was).

If you’re feeling it’s a bit bit much at the moment then I would definitely talk to you DSN and maybe consider running the system out of loop for until you get used to it. It hasn’t really been very long and it’s a significant change so do allow yourself time to adapt. If you have any questions I’m happy to share my experience so far. Sendings you a camAPS high-five.
 
Hello everyone and thank you so much for your replies, it was lovely to read these this morning and I’m so grateful for you sharing your experiences. I actually went straight on to the HCL from MDI, literally going from one evening doing my normal 9pm lantus dose to the pump the following morning so it was a big change. What’s so strange is that I didn’t think I was that vigilant pre-pump really, I didn’t check my Libre obsessively and although I always did carb counting I always felt I had quite a good ‘relationship’ with my diabetes and never felt it dominated my life in any way. I agree totally that handing over the control though to the A.I brain has been a really big adjustment and one I am still going through really, and do fully anticipate this taking months to get used to. It’s just the constant underlying anxiety that is so unexpected and really I can only put it down to the pump. It feels like such a huge physical change for my body and I think it must be linked. I actually emailed my DSN last night with a big rambling email as after I posted on here I realised I really do need some help to talk through what I’m feeling and hopefully discuss some strategies to help. It’s been 6 weeks (today!) now so still very early days indeed and I am am trying to keep telling myself that this will become normal. I found the Libre transition quite tough when I first got one a few years back so trying to use that experience to help rationalise why this change, which is so much bigger, is not straightforward. Saoirse, I was so reassured reading your reply and thank you for sharing your experience with this system. I feel much more emotional and have cried a few times when work colleagues have asked me how I’m feeling which has also thrown me as just not something I would usually do! One question I have about the CamAPS system is do you experience frequent signal loss between your CGM and phone? And also from your pump to the phone? I’m having a lot of them and Ypsomed have referred me to CamAPS direct to try and understand why. It’s certainly not helping me that it keeps beeping at me to tell me it’s disconnected and I then have to turn Bluetooth off/on again to try and reconnect, sometimes it does it quickly but sometimes it takes ages!

Thanks again to you all. Verity
 
Why don’t you try switching the loop off for a few weeks @Verity14 ? That seems the obvious solution to me. As I said, I’ve had a pump years and years, but the only anxiety I’ve felt about it was in the first few days. A lot of that was worry about knocking the cannula out or accidentally pressing buttons (so I used the button lock when asleep at first). I don’t remember exactly, but I’d say it took me something like a couple of weeks to fully get used to it. If you tried the pump alone, you might find the anxiety lifts a bit. To me, it actually reduced my anxiety as I liked the fact that it trickled in tiny amounts of precise basal, thus reducing the risk of hypos, especially overnight. I’d also say that you can control it even more by not using the bolus wizard or whatever it’s called on the Ypsomed. I’ve never used that on a pump or let it tell me how much insulin it thinks I need. I just calculate my bolus myself.
 
Verity14 said:
do! One question I have about the CamAPS system is do you experience frequent signal loss between your CGM and phone? And also from your pump to the phone? I’m having a lot of them and Ypsomed have referred me to CamAPS direct to try and understand why. It’s certainly not helping me that it keeps beeping at me to tell me it’s disconnected and I then have to turn Bluetooth off/on again to try and reconnect, sometimes it does it quickly but sometimes it takes ages!

Thanks again to you all. Verity
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Hi. Are you close to the phone when it’s losing signal? If so then my guess would be it’s the phone’s Bluetooth that’s the issue. Because it needs to constantly talk to two devices at the same time the Bluetooth for looping needs to be strong, and some older phones can’t handle it - the signal should not otherwise drop often. That would definitely stress me out too. if I had it happening and beeping at me the whole time - I had a Samsung A and that lost signal all the time so I bought a second hand S and that handles things fine- see what the camAPS bods say, hopefully they can advise you well.
 
Hi @Verity14 i am so pleased that you have been given access to a HCL but amazed that people are now moving onto that straight from MdI.

As @rebrascorasaid I found trusting the closed loop to do all that I had been doing was a massive step, and I abandoned the attempt initially and tried again successfully after a month, having set out a clear plan with my DSN.

I am out all morning and have just typed a very long message to you, only to lose it all, so will come back to you later. Don’t be disheartened, or surprised that this transition is a challenge. I am a complete convert and would not want to go back, and so pleased that I stuck with it.

Be in touch again soon.
 
Some others have already said what I'm about to say. I've now had Type 1 for over 50 years, it arrived when I was 22 and been married 15 months. I'd done the glass syringe, boiling up pee then finally getting plastic syringes, the invention of the home use glucometer, yada yada - and then 20 years ago got my first pump. Jesus H Christ! (to quote Holden Caulfield) I suddenly had completely lost the intuition I'd gained over my diabetes where I 'automatically' just knew exactly what to do and when to do it and even the bastard thing I had to keep looking in the manual every sodding time I wished it to do anything at all. Just aaaarrgghh - and I felt VERY alone. Ridiculous feeling lost, alone and unloved when I certainly wasn't - but, that's how I felt. Hence it was obviously me that was going batty - and that was worrying! A lady from this very forum was extremely helpful to me at the time but what really really got to me was my own husband when I commented out loud one night that for two pins I'd remove the damned thing and dump it in the dustbin, merely said in a very offhand way that he thought it would all be too much for me to cope with, so he wasn't surprised I'd said that. Red rag to a bull - damned cheek - how very DARE he!!!!! Which instantly made me grit my teeth and made me determined to sort it and myself out. Which I did - within about a week and within another couple of weeks, I was totally at home.

What did actually assist me was the realisation that I had felt like this once before in my life - ie a short while after coming out of hospital (cos in those days they admitted you on diagnosis) when I suddenly had nobody fairly immediately to hand, to ask 'Oooh, so what do I do about this, then?' - answer usually 'Just take your best guess Jen, do whatever that is - and test test test thereafter until you know whether it worked or not!'

I did get a bit over obsessive about the test test testing at that time, but that wore off when I found summat that interested me more - in my case reading the Discworld novels followed by the Brentford Trilogy ......... I do enjoy a good read!
 
Hi @Verity14 Back from weaving now.

What you are experiencing does not surprise me. Switching from MDI to closed loop is a massive transition, rather than the baby steps that I took as the tech was not available/accessible at the start.
m MDI > Pump > Sensor (Libre) added > HCL

The switch from MDI to a pump was a big step and I still remember how scared I was. I then found all the benefits of being on a pump, where I was then able to match the basal insulin to what I needed hour by hour. I was also to manage exercise more easily. Delivering the bolus in different ways : all up front, some up front and the rest over a period of time I chose , depending on what I had eaten (mainly fat content), …
All of these factors are part of the HCL algorithm but I find it helps me to know what it is doing in its calculations as this helps me know when to tell it about what I am planning to do.

I found changing from one pump to another manufacturer at the same times as starting closed loop was too much. I had a month in manual, before we started on HCL. Even then I abandoned the HCL after the first start, as I just couldn’t trust it and I found there was too many interruptions. I was definitely ready to throw the sensors away and return to Libre and what I had done before. My DSN worked with me to come up with a plan to have another go, supported me through the steps, and I also tapped in to the excellent help from the manufacturer’s technical support.

Having now used the HCL system for over three years I would not want to be without it. She (Hermione -my wizard pump) chucks me out of the looping if she needs action from me. This can be because I have forgotten to do a bolus and levels are rising very quickly, my pump is in the opposite side of my body from the sensor and they can’t communicate (easily solved), the sensor is not behaving well enough so it tells me to change it (always replaced in this case) or for no obvious reason. That can all sound very irritating but when I compare it to the amount of thinking I was doing when I used the pump in manual, it does not seem unreasonable that she wants some attention. I would prefer that the system does a check since she is responsible for keeping me alive.

I am pleased that you have opened up to your DSN. You are definitely not alone in finding these changes challenging, and they will be able to support you with this. I would say that it is well worth persevering: I enjoy sleeping all night and waking to a flat line on my graph, going about my day and being able to ignore my pump apart from at meals. Hermione does a lot of the work that I did and I am so much more relaxed about my diabetes.

Very pleased that you have found the forum. There is so much support and expertise to tap into, and no questions are considered silly on here. Just ask, or have a rant, …Whatever helps

Let us know how you get on.
 
WHY THE ( H } ARE WE ALL BEEN FORCED DOWN THIS LOOP ROAD .
NOT BY N I C E BUT
THE MANUFACTURERS you now cannot by a PUMP that's run on it own ALL DAMM SMARTPHONE
AND IT GOT TO BE NEXT TO YOU DAY AND NIGHT WHY WHY
VIC 60 ODD YEAR ON INSULIN ..........
 
o ANOTHER THING WHEN I START MY NEW PUMP MY COST OF PROVIDING A SMART PHONE BROADBAND FOR MY LAPTOP TO DOWN LOAD LIBRE £ 30-00 plus phone sim £ 10-00 .per month
cost of phone £10-00 per month has to be renewed every 2 years ref security updates running out . so say £ 60-00 p month
but it may be better i will all you'll soon tulle i can work it on it i am trying to stay calm vic
 
No one is forced to use a pump or to use the more recent hybrid closed loops.
I do understand the concerns about costs of compatible tech.

The plan is that people that fit the criteria should be offered loops/pumps/Libre.
However I know people that choose to stick with MDI, others happy with a pump but don’t want to loop. We each to make our own choices, but I know that I am very happy to be using the closed loop in my pump. Each to their own.
 
You don't actually need a sim card and data to use a Libre with a smart phone I believe, but you can't download the data to LibreView without it I think.

I used to use a reader with my Libre which I loved and then downloaded the data to my PC every couple of months. I already pay for broadband for my computer, so I don't see it as an additional cost. I do now use an old iphone for my Libre and have reluctantly moved my sim card to it from my Motorola which wasn't compatible with LibreLink, so I use the iphone for everything now but I don't like it at all and it is taking a lot of adjusting to.... Nearly a year now!

PS. I am happy on MDI.
 
rebrascora said:
but you can't download the data to LibreView without it I think.
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It'll work fine over wifi, which most people have in their homes. If you don't, you could sign up with some coffee shop's wifi (or a supermarket's) and visit once in a while. (Normally the data gets uploaded in real time, but almost always nobody will be looking so doing it once in a while will be fine.)
 
VICTOR HILL said:
WHY THE ( H } ARE WE ALL BEEN FORCED DOWN THIS LOOP ROAD .
NOT BY N I C E BUT
THE MANUFACTURERS you now cannot by a PUMP that's run on it own ALL DAMM SMARTPHONE
AND IT GOT TO BE NEXT TO YOU DAY AND NIGHT WHY WHY
VIC 60 ODD YEAR ON INSULIN ..........
Click to expand...

You don’t have to loop. I was offered a loop with my pump and turned it down a year or two ago. I just use my pump by itself. What you’re saying isn’t correct @VICTOR HILL
 
My daughter uses T-Slim at the moment, looping with Dexcom G6, and it’s made a massive improvement to her HbA1c; but it will also work quite happily as a basic pump with no sensors if that works better for anyone. Pumps don’t suit everyone and there are always choices.
 
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