Glucose levels with a mind of their own

[welshannie]

I have been type 1 since 1996 and levels have been well controlled until the past couple of years. Now they fluctuate for no reason as if my body is doing its own thing. Test at 5.30 am and say it's 10, test at 7.30 am before having any food or drink and they could be 15-18. They go up or down as they please. Have a Libre 2 sensor which is driving me crazy. Last night before bed 14.2 One hour later 15.1 so I took 1 unit of Novorapid as the alarm is set at 15. Didn't want that going off all night. 13 units of Toujeo and 3 hours later 4.6. 2 Glucose tablets, 1 hour later 4.9 going down, another 2 glucose, 1 hour later 4.9 so another glucose tablet, 5 haribo sweets and 1 twix finger. 1 hour later 15.1. As the lower alarm is set at 5 this means it went off 5 times in one night. I am ratty!
My daytime Novorapid takes ages to kick in so my levels go sky high until they start coming down. Yes I have seen both my GP and also diabetes specialist nurse who both cannot tell me what is going on. Now been referred to the diabetic team in the hospital but as no-one seems to be monitoring my levels remotely I wonder how long it will be before someone gets back to me. Anyone else got problem like this?

 

[Inka]

Sorry to hear about your struggles @welshannie It’s very disconcerting when something like that happens. My first thoughts: have you had a recent coeliac screen to rule that out; and could it be an injection site problem? Even if you’ve looked after your sites well, over time areas can start to have dodgy/erratic absorption. This often shows itself as highs after meals then a sudden plunge down at 3 or 4hrs.

You’ve mentioned the daytime NR does this so it might well be the cause, or part of it at least. With insulin not following its usual pattern of absorption, levels can go mad. It doesn’t have to be full-on lipohypertrophy. Even small changes or scarring, or even re-distribution of body fat, can cause problems.

I’d also recommend doing a basal test just to make sure that’s ok before you look at your boluses.

 

[trophywench]

Glargine - too slow to catch cold and unabsorbed crystals can build up in the body then suddenly let go and absorb without any warning whatsoever for me - with Lantus I hasten to add. Awful if this happens to affect you - and it sounds to me like you might have this.

Toujeo isn't that very old, what did you use as basal before and why did you change?

 

[Inka]

Glargine - too slow to catch cold and unabsorbed crystals can build up in the body then suddenly let go and absorb without any warning whatsoever for me - with Lantus I hasten to add. Awful if this happens to affect you - and it sounds to me like you might have this.

Toujeo isn't that very old, what did you use as basal before and why did you change?

I think you’ve mentioned the scary crystals before @trophywench It sounds awful indeed. Is it just Lantus that can do that or are there other basal insulins that could, in theory, do the same? Just asking out of interest but mainly so I can avoid them!

 

[trophywench]

Any 'insulin glargine' @Inka. The crystalline thing is the specific way in which glargine is extended release, ie it is honestly intended to form crystals. But certain people's bodies sometimes hang onto them sometimes, instead of just letting them all 'melt' gradually and do what they are sposed to do, that same day. Other folks' bodies just don't store them. Much the same as any side effect of anything.

So that's Lantus, Basaglar, Toujeo and Semglee - and for all I know there could be others.

 

[Inka]

Thank you @trophywench 🙂 Won’t be using any of those when I take a pump break then!

 

[Satan’s little helper]

Any 'insulin glargine' @Inka. The crystalline thing is the specific way in which glargine is extended release, ie it is honestly intended to form crystals. But certain people's bodies sometimes hang onto them sometimes, instead of just letting them all 'melt' gradually and do what they are sposed to do, that same day. Other folks' bodies just don't store them. Much the same as any side effect of anything.

So that's Lantus, Basaglar, Toujeo and Semglee - and for all I know there could be others.

Hello,

What I know with Glargine based basals (Lantus. Personal experience on a working day.) is that hitting them with just fast acting carbs (sugar.) will not help a short term recurrence of lows if the dosage is too high? Basal testing can at least limit the multiple Lows longer acting carbs can impede a recurrence.

Oddly, using a sensor these days. (With a meter.) Lantus can work pretty well for me, long after it has meant to have tailed off. It can still be a cow during the day.

 

[welshannie]

Glargine - too slow to catch cold and unabsorbed crystals can build up in the body then suddenly let go and absorb without any warning whatsoever for me - with Lantus I hasten to add. Awful if this happens to affect you - and it sounds to me like you might have this.

Toujeo isn't that very old, what did you use as basal before and why did you change?

I was using Levemir before but was changed by the specialist diabetic nurse who insisted I use 13 units come what may and she will see me after a month usage. (She also mentioned that she thinks it may be my hormones - I'm 69 !)

 

[trophywench]

Have you actually rung and spoken to said Nurse, told her about this variance with the Toujeo and asked her for advice? I'm presuming here that she is at the hospital diabetes clinics since they have to work full time in a diabetes clinic in order to be eligible to get the extra University course and degree at the end having passed the exams.

 

[welshannie]

Have you actually rung and spoken to said Nurse, told her about this variance with the Toujeo and asked her for advice? I'm presuming here that she is at the hospital diabetes clinics since they have to work full time in a diabetes clinic in order to be eligible to get the extra University course and degree at the end having passed the exams.

No, she is seeing me on 4th April and said to expect ups and downs, but I had all the ups and downs before she changed the insulin so there really hasn't been any overall change at all.

 

[welshannie]

Hello it's me again! Well, no further on with the ups and downs when my body feels like it. Pattern is definitely that my sugar levels start to rise by themselves at 6 o'clock in the morning so now have to get up then and take a small dose of fast acting insulin (they have now changed that to LYUMJEV). Again I was told expect to have to get used to it. The Libre 2 is driving both my dog and my husband absolutely crazy (and me of course) as I have to carry my phone around with me everywhere (even the loo) in the house and garden otherwise the out of signal range goes off. I am having to make so many decisions about how much insulin before meals based on where the numbers are at the time. No I haven't been on the carb counting course yet. I believe I am on the waiting list. I am so disappointed that even when I see the nurse she only looks at the last week's results (some weeks are better than others) so what happens to the all the previous information. I know it is used for trends and gives an overall picture but it would have been nice if they had kept an eye on it and called me in rather than me have to keep pushing for meetings. I have now decided to keep a food diary and list everything eaten and at what time. This seems to be my only way of tracking what is happening. Sorry to rant again but I don't seem to be getting anywhere.

 

[Pumper_Sue]

@welshannie here's a link to BERTIE an online carb counting course https://www.bertieonline.org.uk/Login.asp it will help you no end 🙂

 

[Tdm]

Do you always check your libre readings with blood tests? I found libre to be very inaccurate at night- 10 false alarms one night!

 

[eggyg]

Hello it's me again! Well, no further on with the ups and downs when my body feels like it. Pattern is definitely that my sugar levels start to rise by themselves at 6 o'clock in the morning so now have to get up then and take a small dose of fast acting insulin (they have now changed that to LYUMJEV). Again I was told expect to have to get used to it. The Libre 2 is driving both my dog and my husband absolutely crazy (and me of course) as I have to carry my phone around with me everywhere (even the loo) in the house and garden otherwise the out of signal range goes off. I am having to make so many decisions about how much insulin before meals based on where the numbers are at the time. No I haven't been on the carb counting course yet. I believe I am on the waiting list. I am so disappointed that even when I see the nurse she only looks at the last week's results (some weeks are better than others) so what happens to the all the previous information. I know it is used for trends and gives an overall picture but it would have been nice if they had kept an eye on it and called me in rather than me have to keep pushing for meetings. I have now decided to keep a food diary and list everything eaten and at what time. This seems to be my only way of tracking what is happening. Sorry to rant again but I don't seem to be getting anywhere.

A lot of us knock the signal loss alarm off as it’s a blooming nuisance. I’ve never needed it even 18 months down the Libre 2 line.