Struggling with levels

[freesia]

I really don't know whats happening with my levels lately. I'm struggling.

Last week before we broke up for the school holidays, i kept going high. I put it down to the heat, dehydration etc. I'm usually not too bad. Since finishing for the holidays, i've upped the basal slightly but my levels have gone haywire. Waking levels aren't too bad but after that they just go up. 3-4 hours after breakfast they are going into the 10s, even when i have extra insulin. I need corrections with lunch then they dip low in the afternoon before suddenly shooting high before tea.

Today, i had an extra unit with breakfast and despite cleaning all the windows in the house inside and out and walking up the hill to a postbox i still needed a correction with lunch. This afternoon, they dropped to 5 before a massive rebound before tea. I had a 2u correction before cooking tea but by the time i needed to inject to eat it had gone higher to 14. Its now 90mins after the correction and its high still, now almost 17. I'm getting spikes overnight as well, usually around 3am so i'm guessing they're the DP.

I think its all down to the difference in activity levels and am going to increase the basal again tonight. Its making me feel really low and tearful and struggling to manage the levels.

My other half tries his best to understand but doesn't get how i feel physically and mentally when levels are like this. I know all i can do is my best to manage day to day but apart from you folks on here, no one else understands. I can't even ring a DSN as they discharged me back to GP care so unless i get rereferred i've nowhere to go.

Sorry for the moan everyone, i just needed to have a rant before i really cry.

 

[freesia]

I really don't know whats happening with my levels lately. I'm struggling.

Last week before we broke up for the school holidays, i kept going high. I put it down to the heat, dehydration etc. I'm usually not too bad. Since finishing for the holidays, i've upped the basal slightly but my levels have gone haywire. Waking levels aren't too bad but after that they just go up. 3-4 hours after breakfast they are going into the 10s, even when i have extra insulin. I need corrections with lunch then they dip low in the afternoon before suddenly shooting high before tea.

Today, i had an extra unit with breakfast and despite cleaning all the windows in the house inside and out and walking up the hill to a postbox i still needed a correction with lunch. This afternoon, they dropped to 5 before a massive rebound before tea. I had a 2u correction before cooking tea but by the time i needed to inject to eat it had gone higher to 14. Its now 90mins after the correction and its high still, now almost 17. I'm getting spikes overnight as well, usually around 3am so i'm guessing they're the DP.

I think its all down to the difference in activity levels and am going to increase the basal again tonight. Its making me feel really low and tearful and struggling to manage the levels.

My other half tries his best to understand but doesn't get how i feel physically and mentally when levels are like this. I know all i can do is my best to manage day to day but apart from you folks on here, no one else understands. I can't even ring a DSN as they discharged me back to GP care so unless i get rereferred i've nowhere to go.

Sorry for the moan everyone, i just needed to have a rant before i really cry.

Finally, its coming down again.

 

[Inka]

I totally understand @freesia My levels have gone mad in this heat. I’ve never had them as bad as this. I’ve had highs, hypos, massive drops with only 1/2 unit correction, big changes to all my ratios. I was in tears the other day too. Type 1 is hard enough without madness like this.

All I can suggest is to not beat yourself up about the highs. Don’t overcorrect (with food or insulin). Just try to edge everything downwards over days, slowly.

A big hug for the utter crapness of it all. xx

 

[freesia]

A big hug for the utter crapness of it all

Thanks. A big hug for you too! I'd say its nice to know i'm not the only one but sorry you're having issues too.

 

[rebrascora]

Really sorry to hear you are struggling so much @freesia.... and you too @Inka. My TIR is probably the lowest it has ever been if it is any consolation but I am keeping muy head above water and I think I am getting to grips with it a bit better now.
I wonder if part of the problem is the lack of flexibility with your Tresiba, when your work routine stops for the holidays..... compounded by the unseasonable heat we have had. I think it is easy to be resistant to making corrections or being conservative with the corrections for a few days until you start to realize that you need to be more heavy handed. I went through this when I changed from NR to Fiasp and it took me months of frustration to finally get tough with it rather than being overly careful because I didn't believe/accept that I needed more. I am now more Gung Ho and take the view that if I need a JB here and there or a dried prune or fig or a fresh apricot (since the tree is laden) that that is preferable to sticking needles in myself several times a day for corrections. Obviously, you need to be careful with Tresiba because it covers day and night and you don't want to be having nocturnal hypos but perhaps just being a bit more proactive and assertive with your corrections will help. Obviously, you need to keep a close eye on your Libre and have top up carbs ready if needed.

Hope things settle down soon. Don't forget that you are doing your best and that is all any of us can do. This turbulence will pass (hopefully sooner rather than later) so just hang in there and deal with it as best you can until it calms down.... and it surely will.

Sending ((((HUGS)))).

 

[freesia]

@rebrascora i think it is the Tresiba. Its fine when i'm at work on the whole. I do still get some highs and lows but nowhere near as big spikes and sudden drops.

The problem is the holidays. Being as we have a week/fortnight every 6-8 weeks depending on how long term is, by the time i've got the Tresiba sorted, its time to adjust it back to work amounts again. I'll manage to sort it for now but we're away soon and will be doing lots of walking so i'll end up low. I'll just have to take lots of snacks out with me.

I think yesterday just got to me more, i don't know why. Maybe because since i've finished this time, i've not much energy and feel really tired. I could sleep at the drop of a hat. Its been a very long year with changes and pressures at work and at home trying to deal with social services for parents. Oh well, today is another day.

I hope your levels settle soon too.
@Inka i hope you have a better day as well.

 

[Proud to be erratic]

@rebrascora i think it is the Tresiba. Its fine when i'm at work on the whole. I do still get some highs and lows but nowhere near as big spikes and sudden drops.

The problem is the holidays. Being as we have a week/fortnight every 6-8 weeks depending on how long term is, by the time i've got the Tresiba sorted, its time to adjust it back to work amounts again. I'll manage to sort it for now but we're away soon and will be doing lots of walking so i'll end up low. I'll just have to take lots of snacks out with me.

I think yesterday just got to me more, i don't know why. Maybe because since i've finished this time, i've not much energy and feel really tired. I could sleep at the drop of a hat. Its been a very long year with changes and pressures at work and at home trying to deal with social services for parents. Oh well, today is another day.

I hope your levels settle soon too.
@Inka i hope you have a better day as well.

Hello @freesia, you've been managing D a lot longer than I have.

Can I ask how long have you been using Tresiba? I've momentarily lost track of when I changed from Levermir, but it's got to be over 12 months now. At some point I was on 12 units daily, tuned that down to 11.5, then with the recent heat wave steadily had to come down to 8 units. That has proved to be a step too far and I'm currently at 8.5 and waiting to see if I need to take a further small increase. Over the last 2+ months my world has been relatively turbulent: I had an incisional hernia repair, which was a day procedure but more intrusive than I expected with my original op site from Feb 20 being reopened. Then 3 weeks later I had a blockage in my colon, directly beneath the hernia repair site, from scar tissue snagging my colon; so emergency surgery, same place, and I'm still recuperating. Oh, yes, I got Covid while in hospital and I think the after effects of that are adding to my current tiredness and I continually feel a bit 'spaced out'; hard to pinpoint what or why.

Anyway, through all of this I've found the Tresiba, with its so-called inflexibility to be very predictable and dependable - for me. Yes, I've made basal adjustments, but in response to clear trends displayed on LibreView and solely to try and ensure I get undisturbed nights (no alarms, no hypos while sleeping). Thus, by day I let Libre tell me when I've reached 5.6 and respond accordingly. I unashamedly snack if needed, sometimes with high GI things like sweets or Lucozade, more usually with a biscuit - formerly sweet ones, lately I've got a penchant for cheese flavoured 'Crispies', 'Twists', even Nairns cheese oatcakes. The point is these have carb counts from 2 to 6 each, so my snacks are each quite modest. I do have periods when I inexplicably go high and if I can't reasonably 'get active' to break that trend I take a correcting bolus. My underlying rationale is optimise basal for nights, use snacks and bolus to keep some stability by day.

I hope your break gives you the recovery (and sleep) that you need and that you can find your way out of your current maze!

 

[freesia]

Can I ask how long have you been using Tresiba

I've been on Tresiba almost 3years (i think). Originally i was given Lantus and that worked for a time but then gradually it seemed it wasn't lasting the full 24 hours. Tresiba has been much better for me in that respect but i do get frustrated with the time it takes for any changes to take effect. Working in school, for half term breaks changes may only just be kicking in when i have to change again. I have started to just 'fire fight' if off for a week as its too much hassle.

I'm glad Tresiba is working well for you.

 

[SB2015]

The problem is the holidays. Being as we have a week/fortnight every 6-8 weeks depending on how long term is, by the time i've got the Tresiba sorted, its time to adjust it back to work amounts again. I'll manage to sort it for now but we're away soon and will be doing lots of walking so i'll end up low. I'll just have to take lots of snacks out with me.

The contrast in your insulin needs between the holidays and term time show How much you are on the go both physically and mentally during a school day. Before looping I had to have a completely different profile for term time and holidays, and also had to muck around with ratios and profiles for a bout a week through the transition when I was usually physically sick at the end of each term with exhaustion.

It is hard to explain to others how high levels make you feel so a rant on here is good for you, as we ‘get it’. Sorry you and @rebrascora have been having a wobbly time and hope that things settle soon, and that you can then get a good break.

 

[Proud to be erratic]

I've been on Tresiba almost 3years (i think).

Plenty of time to get used to its longevity, then. I was on Levermir 2× daily, but this was started just before lockdown, initially on fixed bolus doses and no F2F with MY DSN, so minimal explanation about how I might be using the insulin, including basal to act as an adjusting 'tool'

Originally i was given Lantus and that worked for a time but then gradually it seemed it wasn't lasting the full 24 hours.

I was under the impression that Lantus was normally a 2x daily basal.

I have started to just 'fire fight' if off for a week as its too much hassle.

I think those of us who are trying to be conscientious about managing our D are, in many ways, just 'fire fighting'. I certainly feel that it's a continuous task; I try to step away from a term like fire fighting, simply because that has a slightly defeatist aspect to my perception and I recall being told:
"Never mind the Facts, Perception is Reality".

But, although I'm totally retired, much of my week is programmed by events or commitments that I have little control over; sometimes medical appointments, but more often wider family commitments. So I understand what you mean in terms of quite rapid changes between work and other activities and stepping away from the hassle of navigating short term basal changes. I just fall back on snacks and bolus, both of which I can manage while awake!

I'm glad Tresiba is working well for you.

Thanks. As I said previously I hope you get some proper rest ASP then get on with enjoying the break. I'm married to a Teacher, so know how the term builds up and the breaks need a mindset change.

 

[Inka]

I have started to just 'fire fight' if off for a week as its too much hassle.

That’s basically what I did @freesia . I also ran high as I just couldn’t cope with the fear of dropping with tiny amounts of insulin. It’s incredibly hard when things go wrong and you have a life to live. I do what I have to to get through. No, it’s not perfect but sometimes we just have to do the best we can. My blood sugar is higher than usual but not as high as it was, so I count that as a big success. Set yourself tiny targets and give yourself praise when things are ok. I found that mentally resetting my expectations helped my stress.

I’m on a pump not Tresiba or any other such insulin, but even so it’s still a massive pain. This is the tightrope we walk every day. It’s hard. You’re doing ok - just keep going and get through each day safely.

 

[freesia]

Thank you everyone for your kind words of encouragement. I've only had one spike so far today (famous last words, i hope i'm not tempting fate) though no idea why..maybe i shall alter the ratio for that meal. Hopefully the second increase in basal will kick in soon.

 

[Bexlee]

Thank you everyone for your kind words of encouragement. I've only had one spike so far today (famous last words, i hope i'm not tempting fate) though no idea why..maybe i shall alter the ratio for that meal. Hopefully the second increase in basal will kick in soon.

Are you able to just contact DSN at hospital ? Maybe explain. Even if you’ve be referred back to GP surely they’d help as a former patient ??? Maybe worth a try.

 

[freesia]

Are you able to just contact DSN at hospital ? Maybe explain. Even if you’ve be referred back to GP surely they’d help as a former patient ??? Maybe worth a try.

When they discharged me, i asked if i could ring them for help or support. I was told that if it was a general question they could answer but if it was something specific to me then i would need to be rereferred. Seems a faff to try and get an appointment with GP to ask to be rereferred. Last time i did this (when Lantus wasn't working) i had a call from a DSN asking what was the problem before they even agreed to see me again. I feel like if my HbA1c isn't too bad, in our area if they think you are doing ok, you just get referred back to GPs. You folks on here are my source of information and support.

I can understand that they are probably over stretched and struggle to cope/manage workloads and that it is my D and i am responsible for managing it, but it would be nice to be able to ring direct if you have problems.

 

[helli]

was under the impression that Lantus was normally a 2x daily basal.

I used Lantus as my basal for 12 years and always took it once a day.
As others have said, it doesn’t always last a full 24 hours but I was able to time it such that I “filled the gap” with my evening meal bolus.

 

[freesia]

I used Lantus as my basal for 12 years and always took it once a day.
As others have said, it doesn’t always last a full 24 hours but I was able to time it such that I “filled the gap” with my evening meal bolus.

I only took it once a day, usually at bedtime but when i had problems, the DSN took a look at the records i kept and said it was a basal issue and that it didn't seem to be lasting.

 

[freesia]

I was under the impression that Lantus was normally a 2x daily basal

I thought that was Levemir

 

[Proud to be erratic]

@freesia in the 7 day average thread you said:

"Yesterday was a low day, needing lots of glucose to stop me being in the red, then a sudden spike before tea into the 12s before a gradual drop to the hypo. I was a bit low last week through the day so i might knock off half a unit from the basal and see what happens".

You have far more experience with D than myself and I'm conscious that I might be jumping in unwisely. I do find Tresiba needs adjusting occasionally. But I use it to give me assured nighttime stability and I only adjust for nighttime variations.

If your days are not working out so well and I have my share of those, it might be worthwhile looking at adjusting your bolus dosing. Ratios do change over time. But also your activity levels have a huge effect on how your body manages your bolus dose. I presume you are now back at school and perhaps you are doing just a bit more or different than last term - but perhaps that is not accounted for in the bolus dose?

There is a clue in your spike into the 12s before falling again towards hypo. That suggests that initially the bolus arrived before the carbs into your bloodstream and you needed lots of glucose, then the hyper spike, then bolus plus activity could have triggered your subsequent fall. If the spike was short lived it is, as I understand, neither abnormal or serious.

But overall our bodies vary in their basal needs across the day and no basal delivered by MDI can cover these variations; drip supply by pump with varying hourly rates can be a big step towards better stability, but not a single daily long lasting injection.

Twice daily short profile basal could help, eg levermir, but this does mean a lot more "daily tuning" than is apparent at first sight. Depending on whether you are very low carb, moderately low carb or just bolus for whatever carbs you decide to eat will affect your basal needs - because the type of diet has a bearing on your overall natural insulin resistance, which affects any insulin on board - bolus and basal. So the basal split between am and pm needs managing; thus affects how frequently you change each basal dose. It's all inter-related and potentially very confusing.

This is why I stumbled into the convenience and safety of Tresiba and find that works for me. Receive steady night cover, deal with the day as it unfolds. Activity can have more influence than you might realise and, annoyingly, can affect BG across more than one day.

The real challenge is that MDI is providing the wrong insulin at the wrong timings into the wrong place. Its a necessary compromise and we are alive thanks to that compromise. Your pancreas should release fast acting short life natural home-made insulin, into a large vein which gets quickly to where its needed and all regulated by your brain with quick releases from the glucose stores, triggered by the hormone Glucagon from your pancreas, when the balance isn't quite right. On MDI we're doing all that artificially with artifical insulins that last hours, not minutes, from very fine needles (thank goodness) into sub-cutaneous injection sites. In my case, with no pancreas, my liver's glucose store can't receive instructions from my brain (it's the way we evolved!) so extra essential artificial management for me. Pumping is the way forward, but that isn't quite as easy as it is to say. If it was, I'd be there already.

Apologies if I'm meddling, but hope this helps you decide what to change.

 

[freesia]

@freesia in the 7 day average thread you said:

"Yesterday was a low day, needing lots of glucose to stop me being in the red, then a sudden spike before tea into the 12s before a gradual drop to the hypo. I was a bit low last week through the day so i might knock off half a unit from the basal and see what happens".

You have far more experience with D than myself and I'm conscious that I might be jumping in unwisely. I do find Tresiba needs adjusting occasionally. But I use it to give me assured nighttime stability and I only adjust for nighttime variations.

If your days are not working out so well and I have my share of those, it might be worthwhile looking at adjusting your bolus dosing. Ratios do change over time. But also your activity levels have a huge effect on how your body manages your bolus dose. I presume you are now back at school and perhaps you are doing just a bit more or different than last term - but perhaps that is not accounted for in the bolus dose?

There is a clue in your spike into the 12s before falling again towards hypo. That suggests that initially the bolus arrived before the carbs into your bloodstream and you needed lots of glucose, then the hyper spike, then bolus plus activity could have triggered your subsequent fall. If the spike was short lived it is, as I understand, neither abnormal or serious.

But overall our bodies vary in their basal needs across the day and no basal delivered by MDI can cover these variations; drip supply by pump with varying hourly rates can be a big step towards better stability, but not a single daily long lasting injection.

Twice daily short profile basal could help, eg levermir, but this does mean a lot more "daily tuning" than is apparent at first sight. Depending on whether you are very low carb, moderately low carb or just bolus for whatever carbs you decide to eat will affect your basal needs - because the type of diet has a bearing on your overall natural insulin resistance, which affects any insulin on board - bolus and basal. So the basal split between am and pm needs managing; thus affects how frequently you change each basal dose. It's all inter-related and potentially very confusing.

This is why I stumbled into the convenience and safety of Tresiba and find that works for me. Receive steady night cover, deal with the day as it unfolds. Activity can have more influence than you might realise and, annoyingly, can affect BG across more than one day.

The real challenge is that MDI is providing the wrong insulin at the wrong timings into the wrong place. Its a necessary compromise and we are alive thanks to that compromise. Your pancreas should release fast acting short life natural home-made insulin, into a large vein which gets quickly to where its needed and all regulated by your brain with quick releases from the glucose stores, triggered by the hormone Glucagon from your pancreas, when the balance isn't quite right. On MDI we're doing all that artificially with artifical insulins that last hours, not minutes, from very fine needles (thank goodness) into sub-cutaneous injection sites. In my case, with no pancreas, my liver's glucose store can't receive instructions from my brain (it's the way we evolved!) so extra essential artificial management for me. Pumping is the way forward, but that isn't quite as easy as it is to say. If it was, I'd be there already.

Apologies if I'm meddling, but hope this helps you decide what to change.

Thank you for replying. You are not meddling, sometimes it can be hard to see things for yourself.a

On the whole, Tresiba suits me for overnight and through the day although the fact that any changes i made take 3+ days to show any effect does drive me crazy.

On a workday i can't guarantee my level of activity will be the same each day. I often adjust my bolus ratio dependant on what my level is and what i am expecting to do after. Generally though, my bolus ratios tend to be ok (unless i make a mistake with the carb counting, but don't we all occasionally) so i think it is the Tresiba that just needs a bit of a tweak.

Over the last couple of weeks i've noticed a difference in that i'm needing glucose around an hour or so before i get up, which then, even though i bolus less for breakfast, i drop again a few hours after.

I shall drop half a unit of basal for a while and see how that goes. Trying to do the job of a pancreas can be frustrating at times, we can only do our best and just keep adjusting/tweaking when we need to and have a moan on here when its not going so well.