Unpredictable sugars !!!! Absolute mystery

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Sophiesophie

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Relationship to Diabetes
Type 1
Hey all !
Background info ; type 1 diabetic of 20 years . On Lantus & Humalog . Reasonably low carb, high fibre diet in a means to stop sugar spikes that I’ve struggled with my whole diabetic life .
I have been really , really trying to sort out my blood sugars in the last few months after many years of negligence due to hypo anxiety .
After some much needed re-adjustments to my lantus ( split ) dose to avoid night time lows ( from 10 units at night and 10 units in the morning to 6 units at night , 10 units in the morning ) after a week I am starting to see some much needed progress in avoiding my blood sugar dipping between 3-6AM. I was previously awaking with serious night time lows ranging between 3-1.9, no matter what I ate before bed . This ended up with a chat to a pharmacist who suggested I lower my total lantus dose , especially at night . For a few days this worked wonders; not only did I see smoother readings throughout the night on my CGM and no hypos, but the reduction in background insulin seemed to give me better control in the day too and despite being less insulin in total, stopped my glucose spikes post meals too . It really gave me some hope ! However , there has been a day or two this week when these golden glucose readings totally vanish and all hell breaks loose . I’m talking from readings between 4-8 one day, to waking on a glucose of 7 and it spiking to 18 within 15 minutes of getting up ; and countless correction doses given , with very little downwards movement ( 15-18 glucose reading through out the whole day ) ; often slowly climbing down to normal post dinner and then just spiking straight back up before bed . The next day will be amazing again and then the next , relentless highs despite eating the same , exercising the same etc. I’m at my end as I don’t know how to make adjustments to my dose due to how different my glucose is behaving day to day. ANY help or advice would be so greatly appreciated
S x
 
I’m male 66 and had type 1 for two years. I have had good glucose control until the last few months. I have recently experienced similar glucose swings, especially during the night. I spoke to my diabetic nurse about it and was advised to try changing the injection sites. This seems to have helped. Hope this may help and is not too obvious to you since you have had the condition for some time.
 
Welcome @Sophiesophie 🙂 I was going to suggest injection sites too. That can make a big difference to absorption. Also, when did you last have a coeliac screen. Sometimes undiagnosed coeliac disease can cause erratic sugars. Finally, have you considered trying a change of basal insulin? Lantus can release unpredictably sometimes (google Lantus hypos) and you might find something like Levemir works better for your twice daily regime.
 
Hi and welcome.

Firstly, I know it is probably a bit obvious, but are you definitely remembering to take both doses. I imagine, if you have been in a routine of taking your basal just once a day, it might be easy for it to slip your mind. Missing just one of those 2 doses occasionally would cause major disruption to your levels like that.
I am a massive fan of Levemir for it's flexibility. I don't think Lantus is quite as effective split dose as Levemir which was designed to be administered in 2 doses, so I would consider asking about that as an option. I think there is more concern that Lantus can become crystalline when injected and get trapped in tissue and release weeks or months later even when you least expect it. It is rare for that to happen but it can, so something to keep in the back of your mind if you are absolutely sure you injected both doses on the day before these manic days.
Do you have reuseable pens or are you still using disposable pens? The reusable pens often have a dose reminder, so it tells you what your last dose was and when, which is invaluable for those "Did I?" Didn't I?" moments when you inject so automatically, that you just can't remember physically doing it. The pens are also much kinder to the environment and really nice quality and easy to use.
 
Inka said:
Welcome @Sophiesophie 🙂 I was going to suggest injection sites too. That can make a big difference to absorption. Also, when did you last have a coeliac screen. Sometimes undiagnosed coeliac disease can cause erratic sugars. Finally, have you considered trying a change of basal insulin? Lantus can release unpredictably sometimes (google Lantus hypos) and you might find something like Levemir works better for your twice daily regime.
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Thanks for your response Inka ! This is very interesting ; I didn’t know coeliac disease can cause erratic swings in diabetes . I actually have a massive line of coeliacs in my family so this sounds like something I should look into . Defiantly considered changing my background insulin ; in fact it has been suggested that I try Levemir like you have mentioned and I think I will do that if things don’t settle soon .
 
Featherstep said:
I’m male 66 and had type 1 for two years. I have had good glucose control until the last few months. I have recently experienced similar glucose swings, especially during the night. I spoke to my diabetic nurse about it and was advised to try changing the injection sites. This seems to have helped. Hope this may help and is not too obvious to you since you have had the condition for some time.
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Hi Featherstep , thanks for your response ! Injection sites was something that was brought up with me over the summer with my doctor as I have been injecting in my legs for 20 years; I was well aware I should regularly changed my sites but I guess routine just took over ! This has actually changed my life in regards to short acting insulin ( now injecting in my stomach and it works WAY better ) . As for the lantus I was told to continue using it in my legs for some reason? Any idea why ?
 
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rebrascora said:
Hi and welcome.

Firstly, I know it is probably a bit obvious, but are you definitely remembering to take both doses. I imagine, if you have been in a routine of taking your basal just once a day, it might be easy for it to slip your mind. Missing just one of those 2 doses occasionally would cause major disruption to your levels like that.
I am a massive fan of Levemir for it's flexibility. I don't think Lantus is quite as effective split dose as Levemir which was designed to be administered in 2 doses, so I would consider asking about that as an option. I think there is more concern that Lantus can become crystalline when injected and get trapped in tissue and release weeks or months later even when you least expect it. It is rare for that to happen but it can, so something to keep in the back of your mind if you are absolutely sure you injected both doses on the day before these manic days.
Do you have reuseable pens or are you still using disposable pens? The reusable pens often have a dose reminder, so it tells you what your last dose was and when, which is invaluable for those "Did I?" Didn't I?" moments when you inject so automatically, that you just can't remember physically doing it. The pens are also much kinder to the environment and really nice quality and easy to use.
Click to expand...
Hey Rebrascora, thanks so much for your reply ! I certainly have forgotten wether I have done my shots before and of course, if I have forgotten then I have not injected, just incase . A big high for me is better than a big low ! But recently ( the last year ) I have a really solid routine with my lantus . I even have my boyfriend check the insulin type & shot amount every time I do it - he’s even in the routine of asking me now and reminding me of when it’s due ( 12 hours apart from one another ) so I’m certain that’s not the reason . But I think you may be bang on about the lantus being an issue . It’s almost as if some days it works perfectly and some it’s just not there at all ; and I guess the only logical reason for that would be on the days it doesn’t seem to be working , it didn’t absorb fully / only some absorbed . I have read about Lantus lows before ! It’s terrifying ! Luckily I have never had a sudden drop from lantus and monitor my sugars closely the first hour I take it , just incase .
 
rebrascora said:
I think there is more concern that Lantus can become crystalline when injected and get trapped in tissue and release weeks or months later even when you least expect it.
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I‘m not sure that’s quite right @rebrascora ?

The unexpected release is insulin (any insulin) getting trapped in scar tissue.

Some people talk about humalog crystallising in insulin pump tubing?

The description you make of Lantus is pretty much how it works as I understand it. Lantus is soluble at acidic pH, but when injected the body neutralises the acidity making the insulin precipitate forming a ‘depot’ which then gradually absorbs over the 24 hours or thereabouts.

Welcome to the forum @Sophiesophie

Sorry you are having such a runaround with great levels and then chaos from one day to the next :(

For what it’s worth, Lantus is reported to have about an hour of ‘onset’. The slight ‘bump’ in its action is around 5hrs in most people I think.

After many years of nighttime lows that Lantus seemed to give me more often than I care to remember, I finally (after finding forums for support) got it to work by taking it all at breakfast time. That way it was tailing off over night, rather than peaking at night (when I took it at bedtime).

Keep going! You’ll get there 🙂
 
everydayupsanddowns said:
Gosh I’d not heard of that. Do these get yellow carded? Scary. 😱
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Very scary! I don’t know about the yellow cards but I know somebody it happened to and it sounded terrifying. It’s part of the reason I use an ‘old-fashioned’ basal insulin when I have a pump break. I’d never use Lantus and because of the issue with that insulin, I’m nervous of anything too engineered.
 
Thanks for the corrections guys. I thought I had read that it was something to do with crystallizing with Lantus but typical of me to get it the wrong way around. 🙄
 
Well I’ve learned something about the non-precipitating (crystallising) too @rebrascora !
 
Hello and wecome. 🙂
 
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