Toying with an experiment....

[rebrascora]

Almost an hour since last post, so pretty much all of that Fiasp gone now and on the way up again at 6.0 but still with an horizontal arrow. Will do another similar 1.5unit input (trying not to call it a correction so as not to confuse people) when I get between 6.5 and 7 and see if that provides an equally good result. Will probably eat between 8 and 9pm tonight so ideally I want to be between 4.5 and 5.5 then and I am half planning towards that now. No big deal if I am not but makes life easier for bolus timing and with things being pretty stable most of the day at this level, I don't think it will be too difficult.... but always prepared to be surprised.

I appreciate that I am spending a lot of time and thought on this today, but this is an exceptional situation and I am trying to learn as much as I can from it, so whilst it might look like I am being a bit (probably very) obsessive, if this is repeatable to some extent, it could really revolutionise my diabetes management without a pump or basal insulin and by the looks of it, potentially significantly reduce my insulin usage and once I have learned what I need when, it could just become a new regime with the help of Libre and in some respects just a manual Closed Loop system . I have dropped the H for hybrid as of course I have the ability to add in carbs as well as insulin. I am really surprised that this very crude attempt at mimicking a pump is being so incredibly effective and giving such stable results.....so far anyway!

 

[rebrascora]

Interesting development after my last post.........

6pm levels were 6.3 with an horizontal arrow. I had another milky coffee (5g carbs) and then headed out of the house to go feed GGs. Had a big quite heavy bag of hay and empty buckets in the back of the car but decided to carry them on foot instead of take the car. Not desperately exertive so I am not sure if it was the activity or the coffee or my liver suddenly waking up but within 10 mins my high alarm went off and I was 8.3 and a diagonal upward arrow. Jabbed 2 units and continued up the hill. Got to my yard where I had a few small tasks to do, but 20 mins later I was 9.2 and still diagonally upwards, so I jabbed another 1.5u and then continued up the big hill with hay on my back for GGs in the top field. Fed them and came back down home, a mile in total and I was down to 6.1. Jabbed 4 units for my evening meal and zapped it in the microwave. my low alarm went off and I was 4.3 with a downward sloping arrow, so I had 2JBs which stopped the drop and now almost finished my meal and currently 4.7.
more carbs than I normally eat in my evening meal with a mixture of rice and quinoa (probably 50g carbs total) but didn't have any lunch and I am not rigid about my carb intake. I have another trip to do up the hill in an hour or so with a warm mash for GGs, so another mile of up and down hill walking with weights, so will be interesting to see how that goes.

Starting to think overnight might be the challenging bit as I might need more than I expect and perhaps need a couple of corrections to keep in range. At this time I am reasonably tempted to continue the experiment into tomorrow.

Just going to total up my current units of insulin and see how I have fared so far...

 

[rebrascora]

OK, Current tally is 20units of Fiasp since waking up or 21units since I went to bed last night, but I have had to eat 6 jelly babies during that 21 hour period to get me out of the red or keep me out, so potentially 3 units of insulin too many and that is including food as well as covering basal needs, but perhaps the tail end of my previous morning Levemir had covered a little bit of that 21 hour period.

My current dose of Levemir has been 22-24 units in the morning and 2.5 at night and I use a 1:10 ratio for food for all meals with typically 80g carbs a day so 8 units of Fiasp plus 2 extra units of Fiasp to help combat Foot on the Floor in the morning and then there might be a couple of 2 unit corrections after meals for protein release. So a typical daily insulin requirement would be about 40 units. My current tally is at 20u of Fiasp alone so the question is, am I going to need another 20units to get me through to 8am tomorrow morning??

 

[rebrascora]

It looks like my meal spiked up to 8.1 according to Libre 🙄 and is now 7.9 with an horizontal arrow, so about to head out to give GGs their supper and see what exercise does to that.
It is an hour and a half since I injected that 4 units so there is still some activity left in that bolus, but probably some glucose still left to release from the food too. This second trip up the hill with feeds might drop me or it might use up any glucose my liver decides to release. JBs at the ready!

 

[everydayupsanddowns]

Obviously I am not going to be injecting a tiny dose every few minutes, but just wondering if, with perhaps hourly daytime jabs and one per night, I can keep a lid on it and keep in range.

When I shifted to a pump I knew I didn’t want 24 hour basal running when I had my pump start because I’d then overlap it with my pump basal when that started.

I took my Lantus in the mornings, and my pump start was the afternoon. I opted for 2-hourly ‘top ups’ between my usual Lantus dose time, and my appointment.

Worked pretty well!

I ponder whether 2 doses might give you a bit more even-ness rather than running out and then having a bit of a surge then running out again?

 

[Inka]

It looks like my meal spiked up to 8.1 according to Libre 🙄 and is now 7.9 with an horizontal arrow, so about to head out to give GGs their supper and see what exercise does to that.
It is an hour and a half since I injected that 4 units so there is still some activity left in that bolus, but probably some glucose still left to release from the food too. This second trip up the hill with feeds might drop me or it might use up any glucose my liver decides to release. JBs at the ready!

Why the long face (yes, I tried a kind of horsey joke ) Spiking up to 8.1 sounds pretty good to me.

 

[rebrascora]

Thanks for that @everydayupsanddowns . It is interesting. The only surge I had was when I left the house to do some exercise but up till then things had been incredibly stable. Even the surge I did get just after 6pm was not that excessive and some of it may have been explained by the milky coffee I had 10 mins before. I had resolved to jab some more when my levels got between 6.5 and 7 when I left the house, I was in the low 6s and right before exercise, it seemed like tempting fate to jab some bolus. Thankfully, lowering my high alarm to 8.0 enabled me to deal with it pretty effectively and I am pretty confident with stacking corrections as I do it a lot, so I was happy to give it another jab when it continued upwards, although 2.5 in the first place might have been right rather than 2 and then 1.5 and then needing 2 JBs later. I am learning lots from it and may well extend the experiment of maybe even adopt this longer term depending upon how things go tonight.

I am curious about @Lucyr's post on the first page.....
Do I really need some active insulin in my system at all times in order to prevent DKA or does managing my BG levels with insulin by keeping them in range all the time, whether that means there are short periods where the insulin has run out but BG levels are still nicely in range, negates any DKA risk? So say I am on 6.3 and my last Fiasp injection ran out 5 hours ago, is that a concern, that I have no active insulin in my system, providing that I don't suddenly zoom up to 15 or whatever. I have never had DKA so it is not something that causes me any real concern or worry. I am very particular and proactive about keeping my levels in range and more than happy to use my bolus insulin proactively to do so, so I find it hard to understand how I might develop DKA if I inject enough insulin to keep me below 10??

 

[rebrascora]

Why the long face (yes, I tried a kind of horsey joke ) Spiking up to 8.1 sounds pretty good to me.

They will have very happy faces when I get there with their warm feed buckets I can tell you!
Yes, I am more than happy with an 8.1 after 50g carbs and no real prebolus, although it has started to climb a bit again (8.9), so hoping the hike up the hill will deal with that but have my insulin with me in case exercise pushes it up again.

 

[mashedupmatt]

Such an interesting experiment, and better than any programme on TV at the moment - more twists and turns than Line of Duty - the constant monitoring must be exhausting!

 

[everydayupsanddowns]

So say I am on 6.3 and my last Fiasp injection ran out 5 hours ago, is that a concern, that I have no active insulin in my system, providing that I don't suddenly zoom up to 15 or whatever.

Have you had your cPeptide measured @rebrascora ?

It’s relatively common for people diagnosed in adulthood to retain a whiff of their own home-grown insulin production even after many years of T1 diagnosis. Some Joslin Medallists had measurable cPep and ongoing antibody positivity after many decades. which may suggest an ongoing beta cell growth-and-destruction cycle. I think this was something I heard in a talk by Prof John Pickup (one of the clever bods who first developed / converted insulin pumps from existing mechanised syringe devices.

Perhaps you have a little home grown insulin ticking away in the background. Just not enough to fully cover your basal needs (except on some nights)?

 

[Lucyr]

I am curious about @Lucyr's post on the first page.....
Do I really need some active insulin in my system at all times in order to prevent DKA or does managing my BG levels with insulin by keeping them in range all the time, whether that means there are short periods where the insulin has run out but BG levels are still nicely in range, negates any DKA risk? So say I am on 6.3 and my last Fiasp injection ran out 5 hours ago, is that a concern, that I have no active insulin in my system, providing that I don't suddenly zoom up to 15 or whatever.

You can get DKA with normal bgs, I’ve had it, so you’re misinformed by not worrying about DKA so long as bgs under 10. DKA can be caused by lack of insulin in the system even if you’re using up the glucose through exercise or lack or food or peeing it out to maintain normal bgs. Look up euglycaemic DKA.

 

[Lucyr]

You could also read about why DKA risk is higher in pump users than those on MDI. I know you don’t use a pump but the risk of DKA in pump users (notably in event of insulin delivery issues) is higher due to lack of long acting basal insulin (using only rapid insulin), so it is a relevant comparison.

 

[Satan’s little helper]

Do you have access to a ketone meter @rebrascora ? Been following this “experiment.” Tried similar years ago without a CGM on Novorapid. Found myself all over the place.

 

[Lucyr]

Actually perhaps looking into / asking pump users how many hours they’ve been advised it is safe to disconnect from pump for during long exercise with ok bgs would be the best guideline?

If pump users are advised they can disconnect as long as they want so long as bgs ok then perhaps the DKA risk is very small, but if pump users are advised to give a small amount of insulin every x hours to reduce DKA risk you could consider it a starting point?

 

[mashedupmatt]

Have you had your cPeptide measured @rebrascora ?

It’s relatively common for people diagnosed in adulthood to retain a whiff of their own home-grown insulin production even after many years of T1 diagnosis. Some Joslin Medallists had measurable cPep and ongoing antibody positivity after many decades. which may suggest an ongoing beta cell growth-and-destruction cycle. I think this was something I heard in a talk by Prof John Pickup (one of the clever bods who first developed / converted insulin pumps from existing mechanised syringe devices.

Perhaps you have a little home grown insulin ticking away in the background. Just not enough to fully cover your basal needs (except on some nights)?

It's weird as I am the opposite - basal I could probably do away with completely - but if I weren't to bolus I'd be in big trouble

 

[Inka]

Actually perhaps looking into / asking pump users how many hours they’ve been advised it is safe to disconnect from pump for during long exercise with ok bgs would be the best guideline?

If pump users are advised they can disconnect as long as they want so long as bgs ok then perhaps the DKA risk is very small, but if pump users are advised to give a small amount of insulin every x hours to reduce DKA risk you could consider it a starting point?

An hour or so is generally the rule for removing you pump. After that, you might need top up doses to keep ketones at bay. I was told that DKA could develop in around 4hrs in pump users (if there was a pump/site issue).

 

[Lucyr]

An hour or so is generally the rule for removing you pump. After that, you might need top up doses to keep ketones at bay. I was told that DKA could develop in around 4hrs in pump users (if there was a pump/site issue).

I think that means the answer to this is yes, it’s a concern then

So say I am on 6.3 and my last Fiasp injection ran out 5 hours ago, is that a concern, that I have no active insulin in my system

 

[rebrascora]

Well I survived the night and the experiment continues.....

I will post my daily graph from yesterday and so far this morning.....


Yesterday's graph, I will confess I slept late and didn't get up till 10am. You can see the long period in the red which is a common feature for me, even with no evening Levemir dose particularly after exercise. It is now looking like the previous morning's dose of 24u injected at 9.12am on the 25th still had some activity left in it and this is part of what I am trying to establish with this experiment. These hypos are generally very mild and I don't double check them because that would mean I lose too much sleep, but generally Libre reads lower than my Caresens BG meter at low levels, so I suspect a considerable proportion of that red will not be below 3.9 and very little if any below 3.5mmols. I woke up when my low alarm went off at 4.5 and I ate 1 jelly baby thinking that there was no insulin in my system, so a single JB (5g carbs) would be enough, but it never brought be back up above 4.5 so I didn't get another low alarm and slept on. Again this is a common occurrence.... and maybe I should have learned from it by now, but there are times when 2 JBs will take me up to 8 and I sleep really badly at that level whereas I sleep pretty well even when my levels are in the red a bit and I can get back to sleep within 2 mins of chewing a JB to fix it. They really do not bother me at all..... which I know is something that I have to be wary of, but good sleep is really important to me.

The next dip in the graph into the red is where I jabbed the 10u of Fiasp for breakfast and to cover FOTF and whatever basal I normally get from my Levemir in the morning, which with hindsight was clearly too much, so I have learned from that lesson. After that I had a long period from 11am until 6pm when things were really stable with just a couple of small jabs of Fiasp (1.5u and 2u) At 6pm I was 6.3 and about to go out and do some physical activity having been pretty sedentary all day watching the rain lash down! I had decided that I would inject some more Fiasp when I was between 6.5 and 7 but I seemed to be quite stable in the low 6s for about an hour, so I headed out and levels shot up to 8.3 with an upward sloping arrow within 10 mins of leaving the house which was quite a surprise. I jabbed 2 units and carried on up the hill. 20 mins later I was 9.2 and still heading up so I hit it with another 1.5u and continued my steady but exertive activity. Hindsight tells me that 2.5u on 8.3 would have been enough and I wouldn't have needed the second jab. Got back home at 7.30pm to levels dropping rapidly and needed 2 JBs to stop the drop and jabbed 4u for my evening meal (50g carbs) with a slight deduction for planned exercise to follow it. Got to 8.1 and leveled out after the meal but then took off again and I jabbed 2 units at 9.30pm when I hit 9.8 with an upward sloping arrow. More physical activity saw it come crashing down and by 10.05pm I was 5.1 and a vertical downward arrow and needed 2 JBs but by 10 48pm I was back up to 8.1 with a vertical upward arrow! I got a little gung-ho and jabbed another 3 units thinking my liver was suddenly alive and kicking and this was increased basal requirement after a day of it being quite quiet. Of course I ended up dropping into the red a tiny bit again and needed some more JBs after I got into bed but from about 1.30 am I had the measure of it and just needed 2 units just before 4am and another 1.5 at 6.30am when I rose into the 6s.

I did quite a lot of exercise long before breakfast this morning which is why I had a minor dip into the red at 9am. I jabbed by usual 2u FOTF buster just before I got out of bed at 7.30am and on top of the 1.5 units I had injected an hour earlier and the 2 hours of exercise I did before breakfast, I ended up needing 20g carbs so those 2 units were unnecessary. Since then my levels have been steady again, very much like yesterday and ticking along with very little extra insulin than my bolus for breakfast plus 1 extra unit to cover basal, but getting ready to jab another unit and a half now as just hit 6mmols.

My conclusion is that so far, is that it looks like I don't need such a large morning Levemir dose, but might need a bigger dose earlier in the evening, which I can then whittle down for exercise a lot more than just the 3 units I was previously adjusting, so a lower morning dose and having more adjustment on the evening dose will hopefully help me prevent those nocturnal hypos. Going to continue through today and probably tonight as the more experience I get at this, the better I learn to balance things with just the Fiasp and the more meaningful the results get are to draw useful conclusions from.

@Satan’s little helper Libre is absolutely essential to both the safety and success of this experiment in my opinion and I am not sure I would have had the guts to try it without a CGM. My low carb diet also helps I think. Yes, I have access to a ketone meter and strips but haven't felt the need to use it so far, but doing lots and LOTS of Libre scanning with my trusty reader.

@Lucyr I think I mistyped my thoughts last night. What I meant to say is that if I injected Fiasp 6 hours ago and my levels are still in the 6s, do I need to be concerned about DKA. I had previously assumed that FIasp was only active for 3 hours but this experiment is changing my views on that too and it looks like there is still a bit of activity in it after that and perhaps enough to keep me ticking over between 3 and 5hrs post injection. I certainly did not mean to suggest that I would leave it 6 hours after the last Fiasp injection had run it's course, which it appears I actually wrote, although I suspect my levels would tell me I needed insulin well before then. I have not gone longer than 5 hours yesterday without jabbing some and I have lowered my high alarm to 7mmols to give me more advance notice of it rising which it definitely does quite rapidly once I need some more.

@everydayupsanddowns I had my C-pep tested at diagnosis but I was borderline low at the time and only on 7 units of basal and that gradually increased over the first 2 years to my current dose of 20-24 in the morning and 0-5 in the evening so basically about 4x what it was at diagnosis, so I suspect I don't have much left and my problems are/were that large morning Levemir dose lasting slightly longer than 24 hours which I didn't think was possible.

@mashedupmatt Pleased you are finding my experiment interesting. I am loving it albeit I woke a lot through the night last night to check levels, so definitely not to be recommended long term and those crazy spikes last night before bed were, shall I say challenging, but partly because I let things go a little too long and partly because I started chasing the dragon's tail with my Libre readings.

 

[Satan’s little helper]

Well I survived the night and the experiment continues.....

I will post my daily graph from yesterday and so far this morning.....
View attachment 31636View attachment 31637

@Satan’s little helper Libre is absolutely essential to both the safety and success of this experiment in my opinion and I am not sure I would have had the guts to try it without a CGM. My low carb diet also helps I think. Yes, I have access to a ketone meter and strips but haven't felt the need to use it so far, but doing lots and LOTS of Libre scanning with my trusty reader.

I agree. A sensor gives a clearer view on what’s happening. I had nothing more than a meter when I attempted it and still have my hypo awairness. So I can’t realy say my experiment was any good. You seem to be keeping to the time in range, there. Apart from the lows? From my memories years ago. I was all over the shop with my BGs.

 

[helli]

Instrad

Actually perhaps looking into / asking pump users how many hours they’ve been advised it is safe to disconnect from pump for during long exercise with ok bgs would be the best guideline?

If pump users are advised they can disconnect as long as they want so long as bgs ok then perhaps the DKA risk is very small, but if pump users are advised to give a small amount of insulin every x hours to reduce DKA risk you could consider it a starting point?

As I have a patch pump, the equivalent of disconnecting is suspending my basal.
My pump/CGM has an auto suspend function: if my CGM spots I am going low, it will suspend basal.
As I mentioned in this post (the explanation is long so I won’t bother repeating), my pump auto suspended for about 4 hours. Based on previous experience, I would say this was about 30 minutes longer than ideal but I would have had very little Fiasp (the insulin used by my pump for both basal and bolus) on board by the end and my BG never rose out of target until much much later and nothing to do with the basal suspension.