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Hello

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Fatterthantheshadow

Fatterthantheshadow

Member
Relationship to Diabetes
Type 1
Just joined Diabetes UK, I've been meaning to do this since I was diagnosed with type 1, 21 years ago at the age of 28.
I'm sure lots of people will have similar story of evolving therapy as mine, I've been on mixed stat dose, MDI, pump for the last eight years. During lock down I was prescribed Libre, due to Covid no face to face training was possible so I got busy on the Internet. In the last few months I've taken control like never before, even built my own artificial pancreas. I'm hoping to learn but also share
 

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Hi and welcome.

It sound like you are pretty tech savvy. I am very impressed that you built your own artificial pancreas (closed loop system?)
I am not familiar with the format of the graph you have posted but it looks like you had a couple of quite big spikes.... I am assuming the first is breakfast and the second is your evening meal. Libre is fantastic for highlighting problems like that and helping you to fine tune the timing of your bolus insulin to prevent them. I found that I had to prebolus over an hour at breakfast with NovoRapid to prevent my levels spiking but just 45 mins with Fiasp and it has recently dropped to about 30 mins for some strange reason after a year of being longer. I can usually get away with just 15-20 mins at other times of day and sometimes evening meal needs to be when I eat or occasionally after if I had had a particularly active day. Diabetes certainly keeps you on your toes trying to figure out the best strategy to tackle the challenges it throws at you from time to time.
I look forward to learning more about your journey with diabetes and hopefully gaining knowledge from some of your experience.
 
Thank you for the warm welcome Barbara, it's a screen shot of my AP.
I too suffer carb spikes and somtimes unpredictable, I've given myself hypos from pre bolusing poorly so happy to correct the spikes, my AP has an eating soon temporary target option that can help manage them.
Very interesting how you have to pre bolus so far in advance even with fiasp, do you mix it with NR? It looks like you do very well on it! I've looked at it myself, it's not the easiest insulin to use in an insight pump as it doesn't come in the pre filled cartridges
 
Hi. Yes I occasionally get it wrong with the prebolusing... get distracted etc and hypo but not badly and I still prefer that to heading up into the teens and then dropping back down which makes me feel rotten. I also seem to have a very fast digestive system so even with low GI foods the glucose hits my blood stream really quickly and it soon catches up with the insulin if I have got the timing wrong.

I started out on NovoRapid and found that sometimes it would literally take forever to have any effect on a morning and I would try to fit things into that time (an hour + ) and often get caught out. I also wanted something which was quicker for corrections as with my low carb, high fat way of eating, I don't need much bolus insulin for carbs but I need to correct for protein about 2 hours later, so I was hoping the Fiasp would be more effective for that.
I have had 2 trials of Fiasp now and after 3 months I wanted to give up on both occasions but I think I have worked through it this time. It seems to need exercise for the corrections to have any impact. If I can't get exercise, you would think I injected water and I see almost no effect, but a bit of a walk or jog after a correction really seems to really get it going. But no, I don't mix it. I think some people have problems with their sites using Fiasp with a pump but because I am just injecting small doses with MDI and rotating injection sites it is working OK for me now. Would love something faster but there doesn't seem to be anything on the market at the moment and LIbre helps enormously with getting the timing right as I can just keep scanning every 5 mins on a morning until I see the insulin kick in and then eat. Other times of the day I have less issues with spikes and the timing of 15 mins or less is easier to manage without distraction.

Libre really is a game changer and I particularly like the time in range feature rather than concentrating on actual numbers. It makes targets much more achievable if you know that anything above 70% TIR is a bonus and then it just becomes a bit of a game to see what sort of personal best I can get, rather than feeling like a failure most mornings when my levels are above 7. I just think it makes you feel good about your diabetes management rather than feeling like a failure when your BG tests didn't fall into range. I also think it makes a big difference for me with my dietary choices as the protein release is difficult to cover unless you are testing much more frequently than the recommended 5 times a day BG tests.

I am not familiar with the insight pump but can you not use a syringe to fill a cartridge with Fiasp for it if you wanted to give it a go. t does take a bit of getting used to though and quite a few people seem to try it and give up. It can be a bit unpredictable as I said with corrections particularly.

Anyway, that's my very ,limited experience in a nutshell. The forum is brilliant for learning all sorts of stuff. The combined, shared experience of everyone amounts to centuries of knowledge condensed into an easily accessible format and people are so friendly and helpful. I would say, apart from the DAFNE course I went on, the forum has taught me pretty much everything I have learned in the last 2.5 years and I really don't know how I would have managed without it and it's wonderful members steering me in the right direction.
 
No, you can't fill cartridges with a syringe, the ONLY cartridges it takes are prefilled Novorapid cartridges - much like pen cartridges but only about 60% of the size. Suited me down to the ground but my CCG stopped funding them so couldn't have another unless I moved house!
 
Hello and welcome @Fatterthantheshadow it sounds like you have now got a good handle on your regimen, I’d be interested in how you put together your AP setup, I’m considering doing it myself and using „we don’t wait“ for info
 
Thanks Paul, it's quite funny really I didn't intend on it or have any real knowledge. It took an age to get a funded libre from my trust (that's another experience) when it happened I thought I buy myself a Bluetooth transmitter so I could see my levels on my watch when cycling.
From YouTube I realised I now owned the hardware but it seemed quite complicated, lengthy process. The final peace of my jigsaw was time, when my wife caught Covid in November firstly she was really careful not to have any contact with me and confined herself to our ensuite for 14 days , I spent my two weeks of isolation building my AP.
Firstly you need to understand you use a diy Ap at your own risk, the reason they are diy is because there's no approval in place so can't be distributed.
There are 3 main systems and all have their own the read the docs instructions to follow and different hardware requirements, take a look what best suits what you already have.
I'm on AAPS, there's also LOOP and APS
 
Hello Fatterthantheshadow, welcome to the forum.

Just popping in to say hello, I'm glad you found us! It sounds as though you've got a good grip on things and are taking control which is half the battle.

I think the Libre is a game changer too and we have many that have also found it beneficial so I'm sure your experience will be of help to others.

Keep asking questions as we have a wealth of info on the site and many are happy to help.
 
Welcome to the forum @Fatterthantheshadow

We have another member or two on open source hybrid closed loops, is it the Android ‘AAPS’ you are running?

How have you found it?
 
Welcome to the forum @Fatterthantheshadow
Interesting to read about your DIY closed loop system.
I am on the Medtronic 780G with self funded sensors. It has certainly led to me having to think a lot less about my Diabetes, without losing the level of management.

I am another that tried using FIASP, which is only Novovraoid with some sort of adjustment to make it more rapid. I found it did mean I needed a shorter pre bolus, but was so uncomfor to deliver and led to many skanky cannula sites that I gave up and went back to NR.

I look forward to hearing more from you.
 
Thanks for the warm welcome, yes it is the Android APS. Like any therapy there are pros and cons for example there's no professional back up on the end of a help line.

I've heard this about fiasp, some are mixing it with NR to reduce the effects of vitB3. As I have an insight pump it's quite difficult to use, I've read about other people not needing to announce carbs to their system because it works so quickly
 
Do you mean the mixture works quickly because I certainly don't find Fiasp itself very quick.
 
everydayupsanddowns said:
Welcome to the forum @Fatterthantheshadow

We have another member or two on open source hybrid closed loops, is it the Android ‘AAPS’ you are running?

How have you found it?
Click to expand...
SB2015 said:
Welcome to the forum @Fatterthantheshadow
Interesting to read about your DIY closed loop system.
I am on the Medtronic 780G with self funded sensors. It has certainly led to me having to think a lot less about my Diabetes, without losing the level of management.

I am another that tried using FIASP, which is only Novovraoid with some sort of adjustment to make it more rapid. I found it did mean I needed a shorter pre bolus, but was so uncomfor to deliver and led to many skanky cannula sites that I gave up and went back to NR.

I look forward to hearing more from you.
Click to expand...
SB2015 said:
Welcome to the forum @Fatterthantheshadow
Interesting to read about your DIY closed loop system.
I am on the Medtronic 780G with self funded sensors. It has certainly led to me having to think a lot less about my Diabetes, without losing the level of management.

I am another that tried using FIASP, which is only Novovraoid with some sort of adjustment to make it more rapid. I found it did mean I needed a shorter pre bolus, but was so uncomfor to deliver and led to many skanky cannula sites that I gave up and went back to NR.

I look forward to hearing more from you.
Click to expand...
Thank you SB2015
everydayupsanddowns said:
Welcome to the forum @Fatterthantheshadow

We have another member or two on open source hybrid closed loops, is it the Android ‘AAPS’ you are running?

How have you found it?
Click to expand...
Yes that's the one I've built, I literally trust it with my life and I'm very proud of it and thankful to the people who shared the system as open source.
From what I understand it's way ahead of the commercial systems available that seem to take an age to progress and become funded
 
rebrascora said:
Do you mean the mixture works quickly because I certainly don't find Fiasp itself very quick.
Click to expand...
I've no real knowledge and I'd like to find out more about this myself. I understand people have tried mixing it with NR/Humalog at different ratios to help them tolerate the effects it has on their sites
 
rebrascora said:
Do you mean the mixture works quickly because I certainly don't find Fiasp itself very quick.
Click to expand...

Did Fiasp work noticeably more quickly than NR for you to begin with? Has it slowed down? It stopped working quickly for me after about a vial’s worth… and then sites became increasingly itchy and I seemed to get resistant to it (or something) so that it was quite erratic by the end of the third vial when I switched back to NR.

I watched Tim Street’s mixing experiments with some interest, but I think he eventually abandoned it?
 
everydayupsanddowns said:
Did Fiasp work noticeably more quickly than NR for you to begin with? Has it slowed down? It stopped working quickly for me after about a vial’s worth… and then sites became increasingly itchy and I seemed to get resistant to it (or something) so that it was quite erratic by the end of the third vial when I switched back to NR.

I watched Tim Street’s mixing experiments with some interest, but I think he eventually abandoned it?
Click to expand...
Initially it cut about 15 mins off my morning pre-bolus but that still left a 45min wait for breakfast so not a huge improvement and just 5 mins quicker at other times of day (I suppose that is about a 25% improvement so I shouldn't knock it!! Corrections don't really seem to be any faster than NovoRapid unless I do exercise and that is when I tend to get vertical downward arrows. My corrections are usually dealing with protein release which is probably continuing whilst the Fiasp is becoming active, so I think it is difficult to tell if I just misestimate the protein sometimes. I know I wasn't particularly impressed with the Fiasp in those first 3 months of trial each time and I wanted to go back to NR. I think maybe expecation was a bit too high and I found it a bit unpredictable and I feel I am needing more Fiasp than NR to get the same effect but I have worked through the difficult phase this time and I am now better with it but I often need to do corrections when my levels are 7 or 8 and pretty steady or rising slightly and give myself more than I feel I should need in order to keep in range and I regularly stack corrections (naughty I know 😱) to get the result I want, so it has been challenging to come to an understanding with it.... I have found that I need to be "braver" or more generous with it than NR to get the result that I want. This may be partly to do with my low carb diet, but aside from the waiting time for NR I was doing pretty well with it, so I do think that Fiasp has been much more challenging to figure out how it works for me.
I haven't seen any increase in the time it takes to get going since I started using it but I think there may be an increase in how much I need from when I started. As you will be aware it is quite difficult to quantify this, particularly as I have very little routine in my life. I think it is likely that I may ask to go back to NR at some point to see if my usage drops again, but I have found a balance at last using the Fiasp and I no longer regret swapping as I did during the first 3 months.

I probably haven't explained it very well but it is quite subtle in the way it is different. I don't love it like I do my Levemir which I would fight tooth and nail to keep. There are slight gains with Fiasp but not as much as I had hoped and some deficits, so I wouldn't be sad to go back to NR, it would just need some readjustment.
 
rebrascora said:
I think it is likely that I may ask to go back to NR at some point to see if my usage drops again, but I have found a balance at last using the Fiasp and I no longer regret swapping as I did during the first 3 months.
Click to expand...

I was struggling on through some quite chaotic BG fluctuations at the end of my last Fiasp vial, and was much relieved when I swapped back to NR and things just snapped back into place with a very high TIR for the first few days (something like 20-25% higher TIR than my last days on Fiasp!)
 
everydayupsanddowns said:
things just snapped back into place with a very high TIR for the first few days (something like 20-25% higher TIR than my last days on Fiasp!)
Click to expand...

That is a very significant difference Mike! I bet it was a relief!
I think I may have gone through that phase (I certainly remember feeling really frustrated) and I would agree that it was the 3 month stage for me when I found it most difficult but I promised myself that I would give it a full year's trial this time and having pushed on with it I now just seem to have a better understanding of it and how best to use it for me. It's a long way off being a perfect solution though and I am not committed to remaining with it after the year is up but we are getting along better together now.
 
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