Worldly advice needed - Steroid induced, long term insulin dependent.

[Lexilulu]

I think I might be driving myself a bit crazy.

Long story short - but probably still the long version: I been on steroids - prednisolone - for inflammatory bowel disease pretty much permanently since 2019.
I am considered steroid dependent and I’m constantly tapering or increasing my dose depending on essentially the level of blood loss I am experiencing from my bowel disease.

I have also been on one basal insulin or another since 2019 pretty continuously along with the steroids. Hospital stays (of which there have been a few months in total) have always needed bolus insulin as well, due to the need for multiple daily IV hydrocortisone - which always pushed my blood glucose into the 20s by evening… the bioavailability of the IV hydrocortisone is much higher than oral steroids - so it rockets my numbers.

I was on humilin I or similar last year along with small doses of nova rapid with meals - my hba1c was 42 in June 2023 and I was managing well.

I spent a couple of weeks in hospital in November 2023 and they struggled to get the blood sugars under control while I was on hydrocortisone IV

Anyway, somewhere during last years stay the hospital Pharmacist withdrew nova rapid and said I shouldn’t be using it at home (in case I have hypos). I didn’t challenge it because quite honestly, I haven’t got a clue what I should be on or not on with my steroid induced diabetes. I was dealing with some life changing surgical decisions at that time and it’s impossible for me to spin all the plates with everything ALL of the time. I am exhausted by it all.

The hospital put through a referral to the diabetes community nursing team on
my discharge, and my Drs - at my request - put through two more referrals…but it took ages to get anywhere….even with me chasing, lost referrals apparently! I finally got a follow on diabetes nursing appointment and I thought it helpful to get an up to date Hba1c prior to their call… when the nurse called she asked what was going on with me as my Hba1c had come in at 74.

I was really shocked as my blood capillary tests weren’t showing drastic numbers, for the high dose steroids I was back on…Although I’d suspected there may be some kind of issue, as I was so tired - but I suffer from chronic anaemia needing iron infusions and many, many blood transfusions in the past…so it wasn’t immediately obvious that it was my sugar levels.

As part of my plan from 2019 - I was only ever told to test before meals and before bed…and to adjust the basal insulin with the changes in my steroid dose. Anyway, as it turns out, the blood sugar testing I was doing was missing so much of the hyperglycaemia I was experiencing and also missing overnight hypos.

The new specialist diabetes nurse has been great. She got me on a CGM straight away - I had asked a few times for one but I think because I’m steroid induced it’s not considered long term - despite my 5 year steroid and insulin dependency! She also started me on fiasp and I’d managed to get my predicted hba1c down to 56 in just over two weeks.

But….for me and my expectations (more on this below) this needs to be much lower and even with the humilin I and fiasp it seems to matter little if I eat the NHS eat well plate, lower carb, keto, or skip lunch all together….I still get a peak of at least 12 mmol at lunch and if it’s a higher “healthy” carbs lunch - as per NHS advice it’s up to 15-18 mmol and beyond - hence the reason I don’t even need to test refined carbs and chemicals!

I stopped all refined carbs and processed foods as soon as day 2 on the CGM as it was enough info to get a baseline on white bread on day one. I don’t need to test any other refined carbs - it’s pretty obvious I’ll be blind or footless by the time I make my way through the list!

I am eating only home cooked whole foods and sticking to a Mediterranean diet - but mainly keto (have lots of experience with this WOE)

The diabetes nurse referred me back to the dieticians and they are of the mind that I must have bread and rice and potatoes - but tell that to my CGM! I just cannot get a handle on my numbers at all when I eat any starches. I tested it, as per the dietician advice and it’s taken days to get back some semblance of control.

I have no problem eating low carb/keto. I understand that I can’t tolerate refined carbs or sugars - but I just didn’t realise the extent to which all starches were a problem for me, even small amounts. Having had specialist dietician and diabetes input throughout the last 5 years the advise has always been the same, “just eat and we will fix it with insulin” despite my resistance… because it just isn’t working. I mean I can’t even keep my blood sugar under control on a strict keto eating plan or fasted - I really don’t know why they want me to even consider bread or potatoes!

I am currently on my fourth CGM and I am trying to get a handle on the data and these are the things I know:

I take my steroids at 9 ish, along with humilin I - 13 units and I have started taking fiasp 4 units -
but by 12/12.30 lunch time I am at circa 12 mmol or above… and this is with just 2 cups of coffee and cream or also with Greek yogurt, chia, nuts, cinnamon.

The fiasp profile details that the nurse gave me is so out of synch with my experience I have no idea what to do apart from almost wing it with the bolus right now until I find the sweet spot.

I was told to take the fiasp at start of meal or within 20 minutes, but that’s just not working. I was also told the fiasp lasts for 4 hours ( the dietician told me to not even look at the CGM until the 4 hours is up!) - but if and when the fiasp makes any impact (which it mostly doesn’t) it’s done and dusted within an hour or two max.

So, the timing isn’t right for me…and on top of that for the 1 unit of fiasp I am supposed to take to lower by 3 mmol I am finding I need at least 1 unit to illicit a drop of 1 mmol and that’s if the fiasp is going to work.

I’m so lost, I am happy to take control of this situation - even if it’s a secondary issue…I am proactive - I have to be. But I just don’t know what I’m doing anymore.

I’ve been told to try and move more, if I can. As there must be a significant amount of insulin resistance when the steroids take over…but then i'm trying to balance that with chronic blood loss and feeling utter rubbish all the time.

I don’t know whether I should be taking corrected doses of fiasp for the lunch tea time spikes. I don’t even know how much I should be adjusting for the steroids. I was told that I only need to take a couple of units - but that is based on an insulin profile that does not match my individual experience - the effects of the steroids when mixed with any lunch time foods are so exaggerated in relation to what I’m eating - it’s driving me a bit simple.

Before the steroid induced diabetes my hba1c was borderline diabetic and I worked hard with low carb/keto and even carnivore for a few months to get my numbers back to normal range. It worked but I got very unwell with my IBD and stuck on long term steroids.

It’s really important for me to gain some control back not only because of my predisposition to diabetes, but also because my mum died of keto acidosis in 2020 - she’d been a type 2 for 25 years and her autopsy showed that almost every organ in her body had been affected by her uncontrolled diabetes….and quite honestly, I don’t want to follow that same miserable path…

Thanks for reading my rant, I’m not even sure what my question was or if I even had one…I just think I need some reassurance or some guidance on how to manage and interpret my experience with my numbers and bolus insulin - my fear at this rate is that I will go completely bonkers before the diabetes gets me!

Thank you for letting me vent.

 

[EllieM]

Hi @Lexilulu and welcome to the forums.

I have to be slightly careful here as I'm not allowed to give medical advice and I'm T1 and not T2 (steroid induced or not).

But I am an insulin user and I can say that the amounts of insulin needed by different people varies massively, some people need 100s of units, others less than 10. Good record keeping helps to define where you are in terms of insulin ratios and needs. And insulin ratios also vary by time of day.

eg for me, on a basal/bolus regime, when I inject for a meal I have
1) fast acting for food (given by an insulin ratio which varies by time of day)
2) add in (or subtract) a correction dose, (which for me is about 1 unit per ml if my bg is high, I'm much more insulin sensitive when it's lower.)

She also started me on fiasp and I’d managed to get my predicted hba1c down to 56 in just over two weeks.

That sounds very good to me. After 54 years of T2 with decades of levels higher than that I'm still in reasonably good condition and modern technology has allowed me to reduce my levels to lower than that so am not convinced that you are about to drop dead on the basis of bgs alone.

It’s really important for me to gain some control back not only because of my predisposition to diabetes, but also because my mum died of keto acidosis in 2020 - she’d been a type 2 for 25 years and her autopsy showed that almost every organ in her body had been affected by her uncontrolled diabetes….and quite honestly, I don’t want to follow that same miserable path…

I'm sorry about your mother. DKA is caused by insufficient insulin and with access to a cgm and insulin this should hopefully not be a risk for you, though I have no idea about the organ damage for long term T2s. But I'd also argue that an hba1c of 56 isn't uncontrolled diabetes.

Do you have any experience with hypos? The reason we get advised to change insulin levels slowly is that if you have too much then you risk a hypo, so you want to make sure it is a minor hypo that you can easily treat with some carbs rather than a massive overdose that sends you crashing.

Be aware that cgms sometimes record false overnight hypos if you are lying on them - so called compression lows. I'd want to double check with a glucometer if it was me.


I feel your pain but it sounds to me that with a cgm you now have the information to start making more informed choices. Gaining control tends not to be an instant process (well not for this T1 anyway) so in your position I would keep good records and look for patterns.

Good luck.

 

[Antje77]

Hi @Lexilulu , welcome to the forum.

The fiasp profile details that the nurse gave me is so out of synch with my experience I have no idea what to do apart from almost wing it with the bolus right now until I find the sweet spot.

I think winging it while making notes and looking for patterns is exactly the right thing to do. You've already made great progress in only a couple of weeks, and the more experience you get with dosing in your unique situation, the better you'll get at it.

Insulin definitely doesn't work the same for all of us, what your nurse told you is a general starting point, from which to work out how things work for you personally.
Yes, many people find they can dose and eat with Fiasp. But not all of us. I need to prebolus with Fiasp even for low carb meals if I want to avoid spikes.
Both ratios (how much insulin for how many carbs, and in your case also with how much prednisolone) and correction factor (how much insulin to make you drop by how much) are highly different from person to person. They're also likely different depending on time of day, and on your BG to start with.

So again, our nurse gave you general starting points, from which you need to work out what works for you.

On the hba1c, there are a couple of things that can skew the results. And 3 of them are anaemia, blood loss, and blood transfusions. So your lab hba1c might not be all that trustworthy. There is an alternative test, a fructosamine test, which is often used in cases like this.
My Libre predicted hbac's are always a bit off from lab tests but still close enough to be informative.

Thanks for reading my rant, I’m not even sure what my question was or if I even had one…I just think I need some reassurance or some guidance on how to manage and interpret my experience with my numbers and bolus insulin

I think you're doing amazingly well, this quick after starting a bolus insulin!

As for low carb, it's what I do most of the time. Exactly for the reason you mentioned, I don't want to be high for hours before coming down again. My endo is perfectly fine with me eating however suits me.
Did your dietitian tell you why she wants you to eat all those carbs?

Good luck, it's quite a lot you have on your plate. Please rant away whenever needed, and come back with more questions whenever wanted.

 

[Lexilulu]

Thanks for your reply @EllieM

Yes, I think I’m just realising how different the insulin needs are from an individual perspective. My steroid induced diabetes has always been treated rather generically based on best practice advice for short term steroid use… the CGM is showing that isn’t really working anymore. But 5 years is a long time for steroid use, by any standard I guess.

I have never been educated on the insulin ratio for foods. As again…I’m guessing it was never warranted.

Yes the CGM is showing me that time of day matters and also I’ve realised that I’m much more insulin sensitive when my bgs are lower. I’m finding if I don’t catch the bgs in time then the bolus doesn’t have much of an effect.

So how do you work out individual insulin ratio needs? I’m just wondering if I should be on educational course for such things…

Hypos: no not direct experience. I’ve had a few compression lows with the CGM and I was having nightly hypos when I first started using CGM - but I just needed to adjust basal slightly and it corrected itself. I now carry glucose tablets with my bg meter, since being given the FIASP - just in case. It does worry me that I’ll over shoot…especially in frustration as sometimes the bolus doesn’t seem to work at all.

 

[Antje77]

So how do you work out individual insulin ratio needs? I’m just wondering if I should be on educational course for such things…

In the UK, there is a course called DAFNE, aimed at T1's so I'm not sure you'll get a referral: https://dafne.nhs.uk/
There is also this course, which may be easier to join: https://bertiediabetes.com/

I don't have experience with either (wrong country), and I worked mine out by logging food/carbs, insulin doses and BG before and after until I had a pretty good idea on my insulin needs.
The start is pretty easy. Have a food, count the carbs, dose. End up too high? Dose was too low for the carbs. End up too low? Dose was too high for the carbs. With this knowledge you can start finetuning.
It won't be perfect, no matter how well you count, because there are so many factors affecting BG, but it can be a great help.

 

[MrsA2]

@Lexilulu
I'm not an insulin user, nor on steroids but I've been around this forum long enough to know that it takes time to get to know your own body and what suits it with both food and medication.
It sounds like you've been through a horrendous time with lots of professionals taking over and I'm pleased you've finally got the tools (cgm and insulin) to start to take control for yourself. Only long term monitoring and noting of the data will tell you what your body needs. Your body hasn't read the dietician's text books- most of which are out of date by now - and I don't think there's been much proven about steroid induced either.

So yes, you will become the expert in you and your condition. You can now start to take control of you, but it will take time. This has taken years to develop and won't be instantly resolved overnight or even in a few weeks, so please breathe, pat yourself on the back for doing what you've done and finding the support on here and realise you are at the start of lots of learning. You won't always get it right but slowly and surely you will progress.

Just don't beat yourself up so, it's it's marathon not a sprint

And many on here report improvements in bowel issues with low carb eating, so maybe, just maybe your underlying issues might resolve and you can get off the steroids, eventually. No rush, no craziness, you've got this nailed. Never be afraid to ask questions here, best amateur professionals in the business here!

Above all breathe, relax, and hope

 

[Lexilulu]

@Antje77

Thanks so much for the reply -

I guess I didn’t appreciate until putting on the CGM how unique it all is and how insulin needs change during the day etc. it’s been a steep learning curve as I only needed to follow the guidance given on hospital discharges and the odd follow up - this kept it all pretty well controlled, meaning there was never any need to delve deeper into all the variables. I just haven’t needed to until now…

With the FIASP I am also finding I need to prebolous. I didn’t have the data knowledge I now have for when I was on novarapid…so I’m not sure if I needed to prebolus with that. I’m still spiking on low carb, but I’m definitely getting more of a handle as I navigate the insulin. And, it’s definitely low carb I’m eating. There’s no hidden carbs as I’m having zero ultra processed foods/no added sugar/no starchy carbs either. The one thing I am confident about is the food choices I’m making - for the majority of time.

I don’t think I realised until
Wearing the CGM how
Unique it all was in terms of bolusing - but I guess I didn’t realise I needed to know that. The diabetes team didn’t think I did at any rate.

I thought I had to stick to the generic guidelines from the Nurse, I didn’t realise until reading around the forum - something I’ve done for years anyway - that we need to tailor the insulin to fit. I was starting to think I was lost cause instead, as I haven’t been able to control the blood sugars with the info I was told. Now I feel a bit better lol

Thank god I don’t have to finger prick for this info now, it would be a total nightmare right now.

Yes the Dr at the hospital said that my Hba1c of 42 may have been artificially low due to anaemia - but this was only ever explained to me last November…so it makes sense that blood transfusions would affect results as well - luckily I’m managed mainly with iron these days. I will research and ask the nurse about the fructosamine test - thank you for that info.

I have new hba1c test forms for the hospital so I’ll get a better idea of recent changes and in relation to the CGM reading as well.

I think I’m only doing as well as I am because I already have quite a bit of understanding in terms of what to eat. I suspected
I could only control things with a strict low carb lifestyle…and more insulin - the CGM has 100% confirmed this at this stage.

The endo I spoke to a few weeks ago was a bit useless. The consultation report had so many typos I had trouble even deciphering the info. The letter even said I was aware I needed regular “foetus” checks….but I think he meant “feet”

Oh I knew the dietician would be difficult - she said the NHS would never recommend taking anything away from my diet. Thats just what they are taught.
She was insistent I should have starchy carbs with every meal. I just can’t do it. I knew I couldn’t, but I tested it with the CGM - so that I could give her the data. I felt awful, and my eyes remained blurry for days. I just can’t feel like that on top of feeling rubbish already. I’m an upbeat sick person and uncontrollable hyperglycaemia makes me feel really yucky and miserable.

Can I ask how your time in range is? I ask because you sound quite similar to me in the sense of still spiking on low carb. I just wondered what levels you keep and what you aspire to.

Everyone thinks I’m doing really well, but I have to be completely on the ball and pretty much keto on multiple insulin shots a day to do that… I don’t mind it, but I think people assume that it’s all under control, but in the background it takes quite a lot of managing to be even where I am at the moment. Let alone in better control…

 

[Lexilulu]

@Antje77 - ah yes, I was wondering about DAFNE as I was typing the reply to EllieM, but realised that she’s also not in the U.K. and as you say…it’s for type 1. Again I’ll ask the nurse - at least she’s coming to realise from my libre logbook and notes that I’m struggling with most food.

So how would you approach the idea that I should only look at my blood sugar after 4 hours? This is what the nurse and the dietician both said - I think that’s the total FIASP working time - although mine seems to fizzle out by 2 hours.

What testing regime did you use to establish your ratio? As the 4 hours isn’t going to work for me, unless I give up my eyesight further lol

 

[Lexilulu]

@MrsA2 aaaah thanks for your kind words.

I’m trying hard. I know a lot already, but I guess I’m just frustrated with the the gaps in my knowledge and not completely trusting myself or what I know when it comes to challenging what doesn’t seem to be working for me….especially when it goes against perceived “professional knowledge”

I am very much on top of what I need to know for my IBD and I have no problem asking for what I need…but I just haven’t gained that level of skill with the diabetes side of things yet. 1. Partly because I didn’t need to 2. Partly because I didn’t want to! But…it’s not going away and I think I’m probably at the point of no return with the steroid induced side of things anyway… I doubt things will ever be normal, even if the steroids stop.

So, I’ve got my big girl pants on and I’m going to take better care and control over the situation - using the reliable knowledge on the forum and of course the CGM!

 

[Antje77]

Oh I knew the dietician would be difficult - she said the NHS would never recommend taking anything away from my diet. Thats just what they are taught.
She was insistent I should have starchy carbs with every meal. I just can’t do it. I knew I couldn’t, but I tested it with the CGM - so that I could give her the data. I felt awful, and my eyes remained blurry for days. I just can’t feel like that on top of feeling rubbish already. I’m an upbeat sick person and uncontrollable hyperglycaemia makes me feel really yucky and miserable.

I saw a dietitian once, shortly after my 'T2' diagnosis.
The first thing she told me was to not be afraid I needed to count carbs or such. I wasn't afraid of counting carbs, and I had been starting to count carbs in relation to my BG for the 3 weeks I was diagnosed, looked quite useful to me.
The second thing she told me was that I shouldn't be afraid of needing insulin because I wouldn't need it. I wasn't afraid of insulin, I was afraid of high BG, and I was allowed to start insulin less than two weeks after that visit with the dietitian, thankfully.

This was over 7 years ago, and I chose to not see a dietitian again, suits me well.

I thought I had to stick to the generic guidelines from the Nurse, I didn’t realise until reading around the forum - something I’ve done for years anyway - that we need to tailor the insulin to fit. I was starting to think I was lost cause instead, as I haven’t been able to control the blood sugars with the info I was told. Now I feel a bit better lol

Way to go!
The pancreas is a complex organ, and it's really good at finetuning BG, something it works on 24/7.
With you having to take over its job, it only makes sense that this doesn't work well with generic guidelines instead of constant monitoring and adjusting.

So how would you approach the idea that I should only look at my blood sugar after 4 hours? This is what the nurse and the dietician both said - I think that’s the total FIASP working time - although mine seems to fizzle out by 2 hours.

What testing regime did you use to establish your ratio? As the 4 hours isn’t going to work for me, unless I give up my eyesight further lol

Definitely not my approach to ignore everything until the 4 hours is over.
Sometimes I think I'm blessed by having largely been left to figure it all out myself, I never had the need to go against professional advice because I didn't get much of it.

For me, Fiasp seems to have a tail for 4 to 5 hours (showing how different we all are), but this doesn't mean I don't correct before this time is up.

I think you'll be interested in the concept of 'Sugar Surfing', which is a more dynamic approach then carb counting and using fixed ratios and corrections only.
With the changing amounts of steroids you need, and possibly also because of the varying amounts of inflammation you have to deal with, it may be that your ratios vary more than most boring old T1's.

Diabetes Education | Sugar Surfing

Thoughts from Stephen Ponder, MD for people with type 1 diabetes. Teaching the Dynamic Approach (Sugar Surfing) using continuous glucose monitoring (CGM).

www.sugarsurfing.com

I use a mix of sugar surfing techniques and rough ratios (mine vary more than most as well), and some of my decisions are based on gut feeling even when I have no idea why my gut tells me to take a couple of units more or less than logic dictates. For me it's a pretty organic thing.

Again, this is a marathon, not a sprint, getting comfortable with this takes time and practice, and there is no need to learn it all at once!

Can I ask how your time in range is? I ask because you sound quite similar to me in the sense of still spiking on low carb. I just wondered what levels you keep and what you aspire to.

You can ask, and the short answer is 95%, according to my Libre.
The long answer is, please don't compare yourself to others. I've been playing this game for years, and I'm in the luxury position of not working due to mental health issues (going to give it a try for a couple of hours starting tomorrow though, very low pressure job but also very exciting and scary!). I also live alone, so no-one to deal with when it comes to choice and timing of food. So my life is pretty much perfect for dealing with diabetes.

What I aspire to is the best I can get without too many lows and without heading towards a diabetic burn out. At the moment, this means being on top of it, and using prebolusing and food timing to help. But things may be different at some point in the future, and if this means a 70 or 80% TIR, so what?

Also have a look at this, it's informative and very funny, and I think you've been filling your head with information at such a high speed now, you can use a break!

 

[Lexilulu]

Thanks for your reply @Antje77 - I’m really glad that I can go back to the dietician with the CGM results and argue why their approach isn’t suitable at this stage.

How can you tell if the Fiasp has a tail. Does the Libre graph show it clearly? Some of the info with the insulin isn’t quite embedded in my mind yet…I’m just at the starting point of having to work out my own reactions to everything. And I am very very grateful I can do that with a CGM instead of finger pricks!

I haven’t noticed that my Fiasp tails….it just seems to give up the ghost at about 2 hours…and that’s if it even works to start with lol.

I am not happy at the prospect of ignoring all the data for 4 hours at a time, as per dietician advice. That approach is what got me to hba1c of 70 something when I was finger pricking only 4 times a day.

And do you personally correct when you’re going out of range or is it something you do to keep lower bg levels? I’m trying to keep in range but it’s taking a lot more insulin than my DSN was suggesting, but like you say…that info was starting point.

Thanks for the info on sugar surfing. I shall read up. My DSN seems quite nice and understanding at least…she can see the impact on my CGM as I’m logging everything and she’s quite shocked by some of my bgs with foods like beans etc that DAFNE doesn’t suggest you count for etc…

No I don’t want to compare to anyone on the bg control. I’m just interested on what, after all this time, you consider to be right for you. I think we all have different aspirations and levels of compromise. I would settle for more stable levels at the moment - think I’m finally getting somewhere with it!

Yes, I am long term sick at the moment…so I have time to figure it all out, maybe not the energy, but I definitely have time!

Diabetic burn out?

 

[Lexilulu]

I saw a dietitian once, shortly after my 'T2' diagnosis.
The first thing she told me was to not be afraid I needed to count carbs or such. I wasn't afraid of counting carbs, and I had been starting to count carbs in relation to my BG for the 3 weeks I was diagnosed, looked quite useful to me.
The second thing she told me was that I shouldn't be afraid of needing insulin because I wouldn't need it. I wasn't afraid of insulin, I was afraid of high BG, and I was allowed to start insulin less than two weeks after that visit with the dietitian, thankfully.

This was over 7 years ago, and I chose to not see a dietitian again, suits me well.

Way to go!
The pancreas is a complex organ, and it's really good at finetuning BG, something it works on 24/7.
With you having to take over its job, it only makes sense that this doesn't work well with generic guidelines instead of constant monitoring and adjusting.

Definitely not my approach to ignore everything until the 4 hours is over.
Sometimes I think I'm blessed by having largely been left to figure it all out myself, I never had the need to go against professional advice because I didn't get much of it.

For me, Fiasp seems to have a tail for 4 to 5 hours (showing how different we all are), but this doesn't mean I don't correct before this time is up.

I think you'll be interested in the concept of 'Sugar Surfing', which is a more dynamic approach then carb counting and using fixed ratios and corrections only.
With the changing amounts of steroids you need, and possibly also because of the varying amounts of inflammation you have to deal with, it may be that your ratios vary more than most boring old T1's.

Diabetes Education | Sugar Surfing

Thoughts from Stephen Ponder, MD for people with type 1 diabetes. Teaching the Dynamic Approach (Sugar Surfing) using continuous glucose monitoring (CGM).

www.sugarsurfing.com

I use a mix of sugar surfing techniques and rough ratios (mine vary more than most as well), and some of my decisions are based on gut feeling even when I have no idea why my gut tells me to take a couple of units more or less than logic dictates. For me it's a pretty organic thing.

Again, this is a marathon, not a sprint, getting comfortable with this takes time and practice, and there is no need to learn it all at once!

You can ask, and the short answer is 95%, according to my Libre.
The long answer is, please don't compare yourself to others. I've been playing this game for years, and I'm in the luxury position of not working due to mental health issues (going to give it a try for a couple of hours starting tomorrow though, very low pressure job but also very exciting and scary!). I also live alone, so no-one to deal with when it comes to choice and timing of food. So my life is pretty much perfect for dealing with diabetes.

What I aspire to is the best I can get without too many lows and without heading towards a diabetic burn out. At the moment, this means being on top of it, and using prebolusing and food timing to help. But things may be different at some point in the future, and if this means a 70 or 80% TIR, so what?

Also have a look at this, it's informative and very funny, and I think you've been filling your head with information at such a high speed now, you can use a break!

Yes it really is a full time job! Good look with the part time work. I hope you enjoy it.

 

[Antje77]

How can you tell if the Fiasp has a tail. Does the Libre graph show it clearly?

Sometimes I'm perfectly stable after eating and dosing for 4 hours, and then I drop. Even on days where my basal seems to be spot on. So I figured it must be the Fiasp.

And do you personally correct when you’re going out of range or is it something you do to keep lower bg levels? I’m trying to keep in range but it’s taking a lot more insulin than my DSN was suggesting, but like you say…that info was starting point.

I don't have a fixed number at which I correct, it depends on many different things. I sometimes take some extra insulin only an hour after a meal if I'm reasonably sure the rise I'm seeing will go on. Sometimes even if I'm not reasonably sure it will go on, but decide I wouldn't mind a rare treat of something or other should I drop again.
Sometimes I leave things on the higher side (which is still well within the official range of <10), especially if I have to drive, work, will share a bed with my friendly neighbour, all situations where you definitely do not want a low or repeated low alarms.
So again, it's an organic thing, and not all corrections are the same for me.

No I don’t want to compare to anyone on the bg control. I’m just interested on what, after all this time, you consider to be right for you. I think we all have different aspirations and levels of compromise. I would settle for more stable levels at the moment - think I’m finally getting somewhere with it!

More stable levels sounds like a perfect goal for now!
You can always change your goals as you go, and it's very demoralising to reach for goals that are impossible for now, you need to learn to wals before you can run.

Diabetic burn out?

It's a burn out like any, usually caused by too much pressure not compensated by enough successes, like a burn out from work.
It's very important to keep an eye on your mental health and find a balance between dealing with diabetes and life.