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T1 suddenly out of range all the time

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MollyBolt

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I was diagnosed with T1 last June. It was - and remains - a horrific development. But I was keeping my BG well in range (more than 90% of the time) and then a few weeks ago things began to change. I was stressed at work and found myself out of range - which I put down to stress raising my BG and probably being less good about the timings of my NovoRapid. I was on holiday last week, and found things had become even worse (even though less stress and more able to manage the timings - though also harder to carb count). Then last night (back home) I spent most of the night around 19 and feel awful. I took a 3u correction in the night and was at 9 something this morning (much higher than normal when I wake). I had breakfast just now and injected, waited as usual and am now at 12 (even though this never usually happens). I have increased my Levemir slightly over the last week (and presume I should keep tweaking) but am wondering whether to increase the amount of NovoRapid I take. I assume that this is the end of the honeymoon period and I should expect erratic - but I basically now have a constant headache and feel awful so I’d like to try and edge it more into range.

Also I have normally managed without too many correction doses (through walking etc) but I fear that’s not sustainable at least for the short term. But I am also worried about insulin stacking. How many times can I inject and within what time period without needing to worry?
 
First question to consider, @MollyBolt, before you assume it’s your body that’s the problem Have you tried changing your insulin cartridge (or pen if you use disposable pens), or changing to one from a new box if you have changed. Sometimes insulin stops working properly because it’s been stored incorrectly (even before you got it, I mean) or there’s a hairline crack in the cartridge or something. So first port of call is always, swap to fresh insulin and if it doesn’t work, then assume it’s your insulin requirement changing.

It’s hard to say about stacking, because all the official advice is 'dont' so whatever I do (and I do do it) might not work the same for you. What I would say is, give your current correction time to work before adding more, remember that Novorapid reaches peak action after a couple of hours, so don’t expect it to drop you much before then.(hard to remain patient, I know) and have hypo remedies close at hand at all times.
 
When my honeymoon period came to an end I had nearly 3 months of slowly adjusting my Levemir every few days/week by a unit or two until it levelled out and I had one day at the end of that when I ended up having a load of hypos because I had a very active day. I dropped it back 2 units and my Levemir doses have been pretty stable since then give of take a couple of units or so for exercise and summer to winter adjustment.

I think what I am trying to say is that it doesn't have to be more erratic once you come to the end of the honeymoon period and indeed I find it more predictable but the transition period was hard work. I ended up needing pretty much double the Levemir I had been on and as I was increasing it so frequently during that 2-3 month period, I did worry if one day I would drop off a cliff edge and have a whopper of a hypo... in reality the hypos I had that last day were all very manageable, just inconvenient. It was a relief for things to level out though as you do start to wonder when it is going to end.

Once you have your basal dose(s) right it all becomes so much easier again.
 
I had breakfast just now and injected, waited as usual and am now at 12 (even though this never usually happens)

12 isn’t at all awful @MollyBolt if it comes down by your next meal. Don’t be too hard on yourself, and be patient/cautious with any changes you make to your insulins. This could be the end of your honeymoon, or it could be a temporary issue like stress or illness, etc. Sometimes high blood sugar is the first indication I get of illness. Covid does that to me, but a recent non-Covid virus did too.

But Robin has told you the important first step above: change your insulins to fresh cartridges.
 
Sorry to hear you've been struggling @MollyBolt - as everyone has said before it could be a number of factors that have caused the numbers to rise - over the past year, as my (dreadfully named) Honeymoon Period has ended/is coming to an end, I found I have had to literally double my mealtime ratios, but my basal amount has remained pretty steady (still on a relatively low dose),which I do tweak from time to time based on exercise etc. - If you test your basal rate and that is ok though then you could consider tweaking your mealtime ratios (gradually, of course) - this link shows you how to test your basal rate

www.mysugr.com

How To Successfully Test Your Basal Rate

Are you looking for basal rate information and testing instructions? Perfect! You're in the right place!
www.mysugr.com www.mysugr.com
 
Thanks so much for all the very helpful responses.

I’ve changed both insulin pens as suggested (and am particularly suspicious of the Levemir which probably coincided with things getting bad).

And I feel more hopeful that if I am coming to the end of a honeymoon period it doesn’t mean that it will forever be erratic.

Really grateful to you all - as always.
 
Sorry your levels have gone on a wobble @MollyBolt

As others have said, there are a number of possible causes, and like @Robin if things are not behaving normally I will switch the vial of insulin that I am using, just to eliminate that variable.

If it is the end of your honeymoon that will lead to a need for more insulin. I was relieved when mine ended as life became a lot more predictable once those remaining beta cells stopped getting involved without warning. I found that the need for more insulin gradually increased and then seemed to step up.
I well remember the wise words of my consultant where I was concerned about the rise ins insulin dose. ‘You need what you need’.

It is frustrating to wait for a correction dose to get to work, and it is important to remember just how long your insulin is doing it’s work. It is very easy to stack doses. In my early days we did not have sensors so we just tested prior to a meal and had little idea of what was going on in between meals, unless hypo or very high (your 12 is not very high at all if after a meal)

With our sensors we are able to gather a lot more information about the impact of different foods. I was amazed at how difficult I found managing pizza and also porridge. One because of the high fat(as I now know) and the other just because it is for me. We all react differently and then decide on portion sizes and which foods we will have.

Lots to learn and many decisions to make. Just keep asking on here and tap into the wealth of knowledge, then work out which. It’s work for you.
 
Argh! Sorry your diabetes has been messing you around recently @MollyBolt

Hopefully with a few modest tweaks, and some cautious experimentation you’ll get things pottering along relatively uneventfully again (until the next time your diabetes throws its toys out of the pram)

I think many of us long term T1s have had times where stacking insulin was the right (albeit slightly risky) strategy. Remembering that ‘rapid’ insulins are often still working 4-5 hours later is important, but sometimes, if it becomes clear you’ve made an error in estimating a meal, or whatever, then adding the insulin you *should* have dosed originally can help restore things earlier.

If you do it, just keep in the front of your mind that overlapping insulins can act a bit differently, and be cautious - especially if you have any activity coming up in the next 4 hours.

One of the trickiest things when you have both food digesting, and active Insulin On Board, is that the number you are seeing on your BG meter most likely isn’t where you’ll end up once the earlier dose has run its course. And trying to second-guess how much ‘push’ you have from remaining food, and ‘pull’ you have from IoB is never going to be easy. If you stack-correct for a frustrating 14.4mmol/L, which would eventually have ended up being a perfectly acceptable 9.1mmol/L if you just left it, you are pretty likely to overshoot. Then you’ll have a frustrating low BG to battle too. Doubly exhausting!
 
One thought that occurs to me is, are you aware that when our BG is already high, in double figures - any correction doses seem to take longer to get going and/or need increasing to have the effect required? You just have to remember to not be too aggressive though and if you only have a 1 unit pen, if the exact correction dose would be under the next 0.5, rounding that up to the next whole number might well be too much and send you the other way - though if it's well above 0.5 it's usually OK to round it up.
 
Other things go chuck into the mix: you say you have a constant headache, this may be a sign of illness and not related to your BG. And I hate to say it but as people lose weight before diabetes diagnosis that weight tends to go back on after BG has been brought down so if your weight had changed that will mean you need more insulin.

As everyone has said though it’s just likely to be the end of the honeymoon phase.

I hope you get it all sorted.
 
Thebearcametoo said:
As everyone has said though it’s just likely to be the end of the honeymoon phase.
Click to expand...
I think we should be carefully suggesting “the end of the honeymoon phase” for an adult after a few months. I think studies have shown some Insulin production after tens of years.
It is not uncommon for insulin doses to slightly increase over years before stabilising.
I found my beta cells would die off in little fits and starts. This meant there were multiple times over eight years when I needed to nudge my basal dose up and change my I:C ratio before they became stable (ish).
Thankfully, I did not experience that horrible unpredictability when dying cells would suddenly kick back in resulting in a few days of lower BGs. When my cells died, they stayed dead.

In my experience, I would talk about “the next step along the honeymoon phase” rather than the end of it.

However, there are so many things that can affect BGs it is often hard to diagnosed until after the event. For example, like @Inka, raised BG can be an advanced notice of a cold.

@MollyBolt i hope you work out what you need to do this time and it helps to prepare you for the next bump along the road.
 
Hi @MollyBolt. Sorry to hear you’re higher than you have been. It’s frustrating. I’ve had a week off work and the last 2 days I’ve gone into double figures. Happens every time I have a holiday as I’m not as active. Go back to work and it goes back down again.

I had a big issue over Christmas where a box of insulin had been compromised it took a little while to figure that out.

As others have said don’t “beat yourself up” about it. It does seem to be one of those really frustrating things that no matter what you do it happens from time to time.

Do you have a DSN (diabetic specialist nurse) at the hospital you can contact for a bit of help ?

Remember tomorrow is another day
 
So many useful thoughts here - thank you. And particularly helpful to have moral support and counsel right now given I am at 13.2 right now, despite having eaten dinner absurdly early at 6.30 tonight and injected an appropriate amount of time before (early eating was to try and avoid being high in the night). (Especially timely reminder not to be too aggressive in my correction dose!)

Good reminder that I have a virtual appointment with the DSN this Friday. And before that I suspect that @Thebearcametoo is right that I should weigh myself beforehand 🙂
 
I changed my insulin as suggested and everything has been so much better since then. I would never have thought of there being something wrong with the insulin and am so grateful for the prompt. I do think my insulin needs are changing a bit at the moment too - but not feeling that the BG is spiralling out of control is such a relief. Thank you once again for coming to my rescue.
 
I spoke too soon! Since I posted, I’ve now had a bizarre number of lows, with a hypo alarm most nights. I changed my cgm on Tuesday and wonder if it could be something faulty with it? It’s not compression lows because I sleep on my side (the opposite side to the one with the cgm on it). Or could it be an over-reaction to all the highs of the week before? During the days I am a bit zig zaggy (which I wasn’t before the experience of being high all the time). I don’t want to waste a CGM unnecessarily but the night time alarms are getting me down. What’s particularly odd is that I don’t think they are real lows - for example this morning I was woken at 5.30 with an alarm saying I was at 3.5. I swallowed one of those lyft drinks and then went back to sleep - and when I looked a couple of hours later I saw that I had actually then shot up above 10 and only ever really been about 5. (I recognise that this all really sounds like a compression alarm but I really don’t think it is. I also recognise that in an ideal world I’d be testing properly before treating but I’m afraid I struggle to do that in the night because it means I’m doomed not to go back to sleep.) But I’m definitely fluctuating more - day and night - than I did before the experience of being really high all the time.

Advice?
 
Do you have a BG meter by your bed that you can cross-check with @MollyBolt

Sensor manufacturers recommend we always double-check sensor glucose values with a fingerstick check if the reading doesn’t match how we are feeling, just as fingerstick meter manufacturers say if a result doesn’t seem right, check again with another strip, ensuring washed hands etc.
 
You might also find @helli ‘s post about CGM limitations and precautions helpful if you’ve not read it?

H

Thread 'CGM limitations and precautions'

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors.

MarinaDE said:
My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of hypos while I sleep and this morning I had a hypo alarm.
Click to expand...
If these are very short periods of lows and occur overnight, they are more likely to be compression lows - when pressure is applied to a sensor, it will report a false low. The reason I say this is more likely to happen at...
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Sometimes some sensors are more sensitive than others @MollyBolt I once had a couple that gave false low alerts overnight even though I wasn’t lying on them. I eventually worked out that for one it was my nightshirt kind of pulling on it, and for the other it was the position of my arm and the muscle of that arm. So, not compression but still false lows.

I always keep a meter by my bed to check. I use my phone light so as to not wake myself up too much.
 
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My kid sometimes had lows like that because of lack of fluid getting to the sensor so maybe check that you’re well hydrated.
 
MollyBolt said:
I was diagnosed with T1 last June. It was - and remains - a horrific development. But I was keeping my BG well in range (more than 90% of the time) and then a few weeks ago things began to change. I was stressed at work and found myself out of range - which I put down to stress raising my BG and probably being less good about the timings of my NovoRapid. I was on holiday last week, and found things had become even worse (even though less stress and more able to manage the timings - though also harder to carb count). Then last night (back home) I spent most of the night around 19 and feel awful. I took a 3u correction in the night and was at 9 something this morning (much higher than normal when I wake). I had breakfast just now and injected, waited as usual and am now at 12 (even though this never usually happens). I have increased my Levemir slightly over the last week (and presume I should keep tweaking) but am wondering whether to increase the amount of NovoRapid I take. I assume that this is the end of the honeymoon period and I should expect erratic - but I basically now have a constant headache and feel awful so I’d like to try and edge it more into range.

Also I have normally managed without too many correction doses (through walking etc) but I fear that’s not sustainable at least for the short term. But I am also worried about insulin stacking. How many times can I inject and within what time period without needing to worry?
Click to expand...
In all honesty it sounds as if you have come to the end of your honeymoon period so your pancreas has coughed up it's last dredges of insulin, thus you need more.
Are you confident in adjusting your own insulin? If so increase your basal first, then if need be adjust your carb ratio.
 
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