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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Thank you so much for all your replies - you've all definitely given me a lot to think about - I do have hypos and do get very anxious regarding them particularly at weekends when I am very active - tend to over carb before exercise and then have a massive low afterwards so have to over-compensate again, before eating again - a real rollercoaster - so it's worth me mentioning this to the powers that be - I'd definitely like to try a pump to see if that helps - really appreciate all of your input
My problems can be at work? Spent decades being the “muppet” with lows. I don’t explain just sort it as a team player. About time I had a tool to help with that “employee of the month?” At least I show up on time & never pull sick.
 
My problems can be at work? Spent decades being the “muppet” with lows. I don’t explain just sort it as a team player. About time I had a tool to help with that “employee of the month?” At least I show up on time & never pull sick.
I'm a hockey umpire at weekends (Field, not Ice - to a good standard - equivalent of conference level in football) and have enough to worry about in getting decisions right and managing players - the anxiety of having hypos whilst on the pitch makes it more stressful so anything that could help with that would be a blessing
 
I'm a hockey umpire at weekends (Field, not Ice - to a good standard - equivalent of conference level in football) and have enough to worry about in getting decisions right and managing players - the anxiety of having hypos whilst on the pitch makes it more stressful so anything that could help with that would be a blessing
I hear you, my bother. (From your profile I’m not much older than you?) It’s about holding the competency together (the professionalism we value.) we know we have when on “form.” We shouldn’t have in this day & age to deal with these challenges. nearly five decades for me & Doc Kar is chancing on Twitter a “yarn.” Just another “influencer.”
 
I do think it will happen, just a matter of time, money, and resources - just a bit frustrating at the moment
 
I do think it will happen, just a matter of time, money, and resources - just a bit frustrating at the moment
Time and money were always said to be the problem although the NHS did have the resources way back when the likes of me and Mike got our first pumps. I just said to my DSN one day that frankly I was blooming sick of constantly needing to adjust my basal a tiddly bit here there and wherever, and I was sick of it and thought I might do better with a pump - ansd she asked about hypos. I replied that of course I was worried about having hypos, how is it possible to have Type 1 for any length of time and not be? - just because I also constantly took steps to avoid the buggers as well as the huge hypers that it now didn't keep involving a 999 call was all down to me, nobody and nothing else - so I thought I probably ruddy well deserved a bit of a rest from that malarkey every few weeks, please!

And it was another 6-ish months, but I got a pump.
 
Interesting discussion. I'm not particularly worried about hypos at the moment but I am concerned that I'm constantly running high and all the small doses of rapid to try bring that down to a safer level. Its mentally draining as well as risking complications. Are the pumps only for long acting insulin? I feel mines about right and its the meals and snacks that are the challenge.

The guidelines also feel like if I stop making an effort I get a reward?
 
@Standup No, the pumps only use fast-acting insulin. It’s dripped in in tiny amounts every few minutes as a basal, then you add extra, larger amounts as boluses for meals.

Have you done a basal test? Basal is the foundation of good control and if it’s wrong it will throw everything off. If you’re constantly running high, you’re not having enough insulin.
 
@Standup No, the pumps only use fast-acting insulin. It’s dripped in in tiny amounts every few minutes as a basal, then you add extra, larger amounts as boluses for meals.

Have you done a basal test? Basal is the foundation of good control and if it’s wrong it will throw everything off. If you’re constantly running high, you’re not having enough insulin.
Sounds like just what I need 🙂

I have done a basal test and numbers are reasonably steady when fasting. I'm probably not having enough insulin after meals/snacks but having no pancreas at all everything up/down gets exaggerated. Or just totally random some days.
 
Ok, so if your basal is right then you need to look at each meal ratio (ie breakfast, lunch, etc). This will take a few days or even a week or two. I usually start with breakfast, get that as right as possible, then move on to lunch.

I’ve used a pump for more than 20 years. The major benefit is being able to get the basal I need (my basal needs vary a lot over 24hrs). It’s more work than injections and you still need to adjust your own basal as that doesn’t stay static and adjust your meal ratios as they change too.

As you’re Type 3c, I appreciate you also have digestive issues to contend with.
 
To be clear @Standup the pump is only as good as its user. I was a bit worried when you said it sounded “just what you need”. A pump itself is just another insulin delivery system controlled by us. It’s perfectly possible to have a pump and to have poor control.

The hybrid closed loops give some of the control to an automated system which uses blood glucose readings from a sensor to adjust insulin output from the pump, but it’s a long way from an artificial pancreas. How’s your TIR? My consultant said if it was around 85% then there’d be little extra benefit from a loop.
 
To be clear @Standup the pump is only as good as its user. I was a bit worried when you said it sounded “just what you need”. A pump itself is just another insulin delivery system controlled by us. It’s perfectly possible to have a pump and to have poor control.

The hybrid closed loops give some of the control to an automated system which uses blood glucose readings from a sensor to adjust insulin output from the pump, but it’s a long way from an artificial pancreas. How’s your TIR? My consultant said if it was around 85% then there’d be little extra benefit from a loop.
Ignoring the blip for my flu and covid jabs its around 80%. The reason it sounded interesting is that I'm taking my rapid in small doses over a longer period of time rather than all before a meal as larger doses have a disproportionate effect regardless of how many carbs I have and individual small doses don't do enough e.g. 6 units means a hypo and 5 means a high but 3+2 seems to work. As you say my digestive issues (and current lack of Creon) keep things interesting.

It may not improve my TIR but I think my mental health would benefit.

Having said that I do like being in control so would need some convincing about handing over to a pump.
 
If you just had a pump, the control would be all yours @Standup 🙂 I empathise as I like being in control too. That’s one of the reasons I turned down a loop when I was offered it, but the main one was I wasn’t convinced it would do a better job than me or could cope with my lifestyle any better than I could.

That’s interesting re your rapid insulin needs. I’m guessing that’s related to your digestion? Which fast/bolus insulin do you use? On a pump, you can do an extended bolus - ie spread your dose over an hour or two hours or whatever.
 
If you just had a pump, the control would be all yours @Standup 🙂 I empathise as I like being in control too. That’s one of the reasons I turned down a loop when I was offered it, but the main one was I wasn’t convinced it would do a better job than me or could cope with my lifestyle any better than I could.

That’s interesting re your rapid insulin needs. I’m guessing that’s related to your digestion? Which fast/bolus insulin do you use? On a pump, you can do an extended bolus - ie spread your dose over an hour or two hours or whatever.
Novarapid. Its the only one on offer at the moment. I think it is digestion related as had some of stomach and large intestine removed as well as a few other things. It could be surgery related and I'm on one 6 month sick day...could be brittle diabetes....or something else completely.

I might raise it at my next clinic although I'm not hopeful as my local hospital didn't even have an option for type 3c on the system. "oh we don't get many of these so we'll just put you as type 1"

Edit: Which sort of takes us back to the guidelines and how useful/effective they are?
 
Hi @Standup,
@Inka touched on a possible issue: your digestion. Are you certain you are taking enough Creon to be sure your counted carbs are all getting digested?

I certainly agree that after the basal check it's most helpful to systematically sort out one meal at a time. I do remember that somewhere in my 2nd year after diagnosis, by which time I had Libre 2, changed my DSN and Consultant - I set about getting my bolus arrangements improved. I looked at one meal at a time, starting with breakfast.

Until then my breakfasts were quite different from day to day, so I went with yoghurt, various fruits, seeds and nuts and a frothy coffee. I standardised the amounts of each to achieve a fairly standard breakfast but because of fruit availability in our village shop there was always some variation; so I weighed, measured and carb counted. In hindsight I could have used frozen fruits and quite fixed portions. I spent 3 or 4 weeks persisting with this and started to get a fair amount of uniformity with my breakfast results.

I then repeated that with a different sort of breakfast based on eggs, bacon and toast. This took less time to get the repeatability and stability - but it served me well because I was needing to travel and take overnight stays in hotels or B&Bs. I then had a useful launch pad for my day. There were glitches from time to time, but because I'd spent a decent amount of effort in assuring myself that my processes worked, I'd check after a glitch if I'd got an obvious explanation. Sometimes I could explain to myself why - and when I couldn't explain I moved on; tomorrow was a fresh start, forget yesterday

Having sorted breakfasts I did the same for lunches; these were always pretty simple: cheese, cold meat or paté and bread or biscuits, plus more latte.

Dinners became my next target, and my wife most helpfully played her part by creating 20 or so very repeatable home cooked meals, which we carb counted from the ingredients initially but then developed a composite % carb content per 100 gms and now I could have different sized portions just weighing out however much I wanted. I could also have seconds, provided I weighed the second portion and bolused just before eating.

This all took a fair amount of time. I kept an alphabetical indexed book with notes and records against each type of meal. I still use that index book - it's my variation on the carbs & cals book (which I still also use). The bonus is that when eating out I can often find menu choices that work with my own data and invariably chefs are happy to give me the weights of different portions, particularly potatoes.

Since then I've felt happy that my guestimates for the carbs in any one meal are about right. I used to scrupulously use different bolus / carb ratios for breakfast, lunch and dinner. These days I use 1:10 for all meals including snacks. After doing the maths I find the bolus requirements are too small for even my half unit pen. Also because the bolus dose needs an adjustment factor to mitigate against how active I'm going to be or have been, I decided there is little point in deriving an exact figure for the carbs, which is then going to have an arbitrary reduction based on my instinct, but with no justifiable precision.

I always keep an eye on my CGM and have a reserve 10-20 gms of carbs available, in case it's all going wrong. At home that's easy; when away I have various snacks easily accessible, from known sources. These can be things like Graze or Nakd bars, biscuits, a small pack of crisps, etc; and of course hypo response foods. Those used to be JBs, but nowadays the mini packs of haribos or a small carton of orange juice work well for me; if there are grapes that need eating up from home I'll take a small tub of 100gms, ie 15gms CHO.

If this sounds that I have this cracked and it's all easy, then I'd be misleading you. My systematic approach only works most of the time. There are always glitches and mishaps - some of my own making, some not. But I feel happy that I can have some confidence in my food calculations. I probably need to do a bedtime correction 1 day in 5, maybe once a week. During daytime, I only deal with highs over 14, otherwise I let the day's events overtake highs; just sometimes I'll specifically go for a fairly brisk walk to knock down a high. Anything up to 14 I'll usually wait and correct in the pre-bolus before the next meal. When high just before a meal I will probably wait after my prebolus until there is clear evidence from my sensor that my BG is falling; this can be a major intrusion into family life and really irritating to my wife who wants to put hot, but not overcooked, food on the plate.

I often do a split bolus with home meals and always when eating out. At home I prebolus for the main meal and then a second bolus if I decide to have a dessert. Puds are rare for us, but I can often have some ice cream and banana or whatever ... (measured of course) or a magnum, or a supermarket "off the shelf something" (heavily processed of course) with a given carb count from the packaging.

The other reason for not getting too bogged down in tight carb calculations is that there are 41 or 42 known factors that can affect our blood glucose and several of those (like exercise and activity) can not be calculated, only estimated and some not even foreseen. So with so many other things at play in this D malarkey, I find it less stressful to directly manage what is in my reach and deal with those I can't foresee or pre-empt by bolus, snacks or exercise as appropriate. All of that is relatively doable thanks to CGM and I can't start to imagine how people managed before CGM!

In his book Think Like a Pancreas, the author Gary Scheiner tells the reader that Diabetes is Complicated, Confusing and Contradictory. It is so true. I could write pages with examples of each of those descriptions. The 43rd factor is a wrong colour socks day.
 
I'm probably not having enough insulin after meals/snacks

Are you taking your mealtime insulin after eating? Sometimes nurses suggest this initially because it's a more cautious approach, but 'rapid' mealtime insulins can still take 15-30 minutes to become available in the body, so many T1s on the forum find it helps to take before eating, and sometimes it's helpful to give the insulin a bit of a head start with a pre-bolus - taking the meal dose 10, 20, or 30 minutes before actually eating the meal (or if splitting, the first part of the dose, with the second part following on later).

Adjusting my insulin timing went a LONG way to evening out the post-meal fluctuations for me. Over the years I've found these aren't set in stone, and can ebb and flow like many other factors in my diabetes management arsenal. Initially I experimented to find the (different) timings that seemed to work for each mealtime... (longest at breakfast, shorter at lunch, and hardly anything at evening meal) then over the years I've adjusted based on the post-meal numbers I'm seeing.

For me it can be the difference between a meal dose struggling to keep me out of the teens, and exactly the same dose matching the absorption of the food better and topping off in the mid 8s.

Might be work some experimentation to see if it helps?
 
Hi @Standup,
@Inka touched on a possible issue: your digestion. Are you certain you are taking enough Creon to be sure your counted carbs are all getting digested?
Definitely not but then my local pharmacy hasn't had any Creon since July and each week is a drive/phone around to get another 100 or 200 tablets which then has to be rationed.

Edit: correcting typo
 
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Are you taking your mealtime insulin after eating? Sometimes nurses suggest this initially because it's a more cautious approach, but 'rapid' mealtime insulins can still take 15-30 minutes to become available in the body, so many T1s on the forum find it helps to take before eating, and sometimes it's helpful to give the insulin a bit of a head start with a pre-bolus - taking the meal dose 10, 20, or 30 minutes before actually eating the meal (or if splitting, the first part of the dose, with the second part following on later).

Adjusting my insulin timing went a LONG way to evening out the post-meal fluctuations for me. Over the years I've found these aren't set in stone, and can ebb and flow like many other factors in my diabetes management arsenal. Initially I experimented to find the (different) timings that seemed to work for each mealtime... (longest at breakfast, shorter at lunch, and hardly anything at evening meal) then over the years I've adjusted based on the post-meal numbers I'm seeing.

For me it can be the difference between a meal dose struggling to keep me out of the teens, and exactly the same dose matching the absorption of the food better and topping off in the mid 8s.

Might be work some experimentation to see if it helps?
Started taking it before meals which saw a hypo before going high and then smoothing out. Currently taking some with my meal and then an hour later which until my flu jab was working ok. This is only for high carb meals (80g +). I'm probably not describing it very well but the more insulin I take the more extreme the effectiveness. There's probably a maths term for it but its not a straight line in per unit effectiveness. I may need 8 units in total but if I take them all together its too much. Taking them in 2x4 doses even fairly close together works much better. And no reducing the amount doesn't work either as it ends up being 6+2 (to take random examples).
 
When I decided to start experimenting with split boluses, any number of Type 1s agreed that you start with 60% upfront, balance thereafter. OK I'll try that first then, though I'm only intending to do this with 'fatty' meals (eg pizza, fish & chips etc) in which case because even the first carbs in my mouth will be just as fatty as the last mouthful, surely more logical to have less upfront and more later? and found logic was correct in my case. So it's a max 40% to begin with now and just drip the rest in over the next hour-ish cos I use a pump - otherwise it would be the upfront part, then half the balance after half an hour ish, rest after another half hour ish - or more likely, when I remember ! TBH. (I am terrible at that, get far too interested in summat else and forget what I'm sposed to be doing.)
 
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