Normal or concerning?

[LittleSunflower]

Hello all, I have another question.
(For reference if you haven’t read my other posts; Diagnosed Type 1 April 2021. I am in a honeymoon period, have a Libre 2 and currently only taking 2 units of Levemir in the morning) I have been on Levemir for one month already!

Earlier, I was sat down watching the television when I felt a headache come on but brushed it off.
My Libre alarm went off for a high glucose warning of 13.8. Now I know why I had the headache.
I tested my blood glucose within this time period and they were in the 14+ (Can’t remember exactly). I tested again ten minutes later with the libre which read 14.9. I tested for ketones but it said 0.1 which is ok.
I drank some water to try and lower my levels. I tested again after an hour and it read 11.2. I tried to test my libre level again another half an hour later but it said to try again in 10 minutes. It had dropped to 8.6.
I had the error message again and it had dropped to 8.1. At this point, I began to feel sick.

14.9 to a 6.0 in a two hour period.
Is this why I have a headache, feel nauseous and tired? I am a natural worrier, should I be concerned or is this just because of the major fluctuation of my levels?
Thank you

 

[rebrascora]

Hi, Good to hear from you again but sorry that you had another unpleasant experience.

Yes, it is likely the big fluctuations which are making you feel unwell. I remember my first big spike and trough and it wiped me out for the best part of a day! I think panic is part of it too as it feels pretty scary, but whilst it shouldn't do you any damage as a one off, you definitely don't want that to be happening regularly.

The Libre system gets a bit upset when levels are changing that rapidly and that is why you get the try again in 10mins message, so don't worry too much about it malfunctioning or anything as long as it is reading OK now that (hopefully) your levels have settled down a bit.

Are you using the NovoRapid yet? If not, it may be time to start, as those sort of huge peaks and troughs are not pleasant to experience. Please discuss this with the DSN as soon as you get the opportunity, to see about starting the NR for meals.

 

[Peely66]

I had a similar experience a couple of months ago when my bloods dropped quickly after a correction. Very nauseous. I'm not a newbie to diabetes having had it for over 30 years but that's the first time I really connected the two events. Of course correlation is not causation but I think it was this time.

 

[LittleSunflower]

Hi, Good to hear from you again but sorry that you had another unpleasant experience.

Yes, it is likely the big fluctuations which are making you feel unwell. I remember my first big spike and trough and it wiped me out for the best part of a day! I think panic is part of it too as it feels pretty scary, but whilst it shouldn't do you any damage as a one off, you definitely don't want that to be happening regularly.

The Libre system gets a bit upset when levels are changing that rapidly and that is why you get the try again in 10mins message, so don't worry too much about it malfunctioning or anything as long as it is reading OK now that (hopefully) your levels have settled down a bit.

Are you using the NovoRapid yet? If not, it may be time to start, as those sort of huge peaks and troughs are not pleasant to experience. Please discuss this with the DSN as soon as you get the opportunity, to see about starting the NR for meals.

Hello Barbara, lovely to speak with you again. How are you?

I believe I had the same experience Monday evening. What happens if this is a regular occurrence? Is this what effects the eyes?
It seems after my dinner (around 5:30-6:30pm) my levels will shoot up 2+ hours later. Having the libre, the daily graph definitely shows that I spike an hour or two after I eat but more so in the evening so I wondered if I would be started on the Novorapid. Unfortunately the diabetic community team have discharged me as I got seen by the hospital but I’m yet to be contacted by them to discuss anything further. I miss my community nurse as they are basically the ones who saved my life last month to put it lightly! It makes no sense to me to be discharged from a great team who check in every other day just because the hospital are taking over my care but I’m yet to speak with anyone further since my diagnosis. (Understanding they are under huge pressure at the moment)

The past week has been VERY stressful for me and it still is so I know levels can rise with stress. No two days are the same with this whole diabetes thing!

 

[rebrascora]

That spike 1-2 hours after eating is not stress related though, it is down to the food you ate and if you take the NR before you eat, the insulin starts to hit your blood stream about the same time as the glucose does and it stops the spike happening or at least flattens it out a lot. The big variations put small blood vessels under pressure and if it is happening a lot it can, but not necessarily will lead to complications. The whole thing with diabetes is reducing the risks by managing things as well as you can. There are no guarantees of anything. Some people go through phases where they really neglect their diabetes management for a variety of reasons and get away with it and some people try really hard to have very good control and still suffer complications, so there is an element of it being a lottery but certainly worth doing your best to minimize the risks by preventing those large spikes. What did you have to eat? Maybe look at reducing the carb content next time you have that meal if you don't have anyone to support you starting the NovoRapid at the moment. Or ring the diabetes clinic helpline number and ask for advice. Our clinic is just an answer machine but if you leave a message and your number they will ring you back the next working day. I would imagine most hospital diabetes clinics have a similar system.

 

[Inka]

Yes, blood sugar falling fast can make you feel rough and almost panicky @LittleSunflower Its an unpleasant feeling. You already know what I’m going to suggest, don’t you? Clue: it begins with N and ends with ‘d’! You don’t have to take it at every meal.

I suggest you speak to the hospital DSNs. Phone the Diabetes dept (or get to it via the switchboard) and ask to speak to a DSN. That’s what they’re there for. Mine have always been extremely helpful.

P.S - ensure they prescribe a half unit pen.

 

[LittleSunflower]

I also have another question in regards to the Libre; @rebrascora around 3pm tomorrow, it will have been 2 weeks since I had my first Libre applied. I’ve asked for help from the nurse again and have an appointment for fitting at 1pm - is this ok?
Any tips for helping get it off? It’s peeled up at the sides but I have a feeling it may hurt when the filament comes out.
also, in regards to location - it’s currently on my right arm, do I have to have the new one fitted on the left?
Thank you x

 

[Bruce Stephens]

I’ve asked for help from the nurse again and have an appointment for fitting at 1pm - is this ok?
Any tips for helping get it off?

Just slowly and gently peel it off.

It’s peeled up at the sides but I have a feeling it may hurt when the filament comes out.

It won't. The filament is flexible so you won't feel it.

it’s currently on my right arm, do I have to have the new one fitted on the left?

You don't have to. You do want it to be a little apart from where the last one was, so using the other arm makes that easier.

 

[rebrascora]

Yes, getting it fitted at 1pm is fine. Are you going to continue to use the existing one until it runs out or start the new one straight away. Probably better to let the old one run it's full time and let the new one bed in for a couple of hours before you start it.
The sticky adhesive will hurt far more than the filament coming out which is very fine and flexible and you won't feel at all. I believe baby oil can help to loosen the adhesive or there are special sprays I think to make removing them easier. I just prise one edge up and then pull it off just like a sticking plaster. Don't worry about the filament though it really is nothing more than the thickness of a hair... maybe a beard hair rather than head hair.... but still not a problem.

I think most people alternate arms and with you being quite petite it is probably best to do so as there will not be a lot of space on your arms to locate it in a new position on the same arm and if you use a product to remove the old one you could get some on the new one and compromise the adhesive, so yes I would go for the other arm.

 

[LittleSunflower]

Yes, getting it fitted at 1pm is fine. Are you going to continue to use the existing one until it runs out or start the new one straight away. Probably better to let the old one run it's full time and let the new one bed in for a couple of hours before you start it.
The sticky adhesive will hurt far more than the filament coming out which is very fine and flexible and you won't feel at all. I believe baby oil can help to loosen the adhesive or there are special sprays I think to make removing them easier. I just prise one edge up and then pull it off just like a sticking plaster. Don't worry about the filament though it really is nothing more than the thickness of a hair... maybe a beard hair rather than head hair.... but still not a problem.

I think most people alternate arms and with you being quite petite it is probably best to do so as there will not be a lot of space on your arms to locate it in a new position on the same arm and if you use a product to remove the old one you could get some on the new one and compromise the adhesive, so yes I would go for the other arm.

I’ve just had a notification saying it expires in 24 hours so it must’ve been just before 2pm I had it fitted. Should I try to rearrange the appointment for later on in the day? I was just going to take this one out in the morning and then have the new one fitted at 1pm but if you say it’s better for it to completely expire, I think I will do that.

 

[rebrascora]

It might have been better if the new one was being applied today and then had 24 hours to bed in before activating it, but if your appointment is 1pm tomorrow that will be fine but I would leave the existing sensor in place until it stops working and then activate the new one and remove the old one. Many people find that the first 24 hours the readings can be a bit erratic and applying the sensor a day in advance of activating it helps it to be more accurate when they do start it. I personally wait for the old one to expire and then apply the new one because I struggle for the adhesive to survive the full 14 days without adding an extra day and for me it is pretty accurate right from the 60 minute count down, so no real benefit in applying it early.
Please don't worry about the timing of it though. It isn't that important because you always have your finger prick and BG meter to fall back on even if there is a gap between the old one running out and the new one being applied or you can have two attached at the same time but once you start the new one by scanning it and telling it to start the old one will stop.

 

[LittleSunflower]

It might have been better if the new one was being applied today and then had 24 hours to bed in before activating it, but if your appointment is 1pm tomorrow that will be fine but I would leave the existing sensor in place until it stops working and then activate the new one and remove the old one. Many people find that the first 24 hours the readings can be a bit erratic and applying the sensor a day in advance of activating it helps it to be more accurate when they do start it. I personally wait for the old one to expire and then apply the new one because I struggle for the adhesive to survive the full 14 days without adding an extra day and for me it is pretty accurate right from the 60 minute count down, so no real benefit in applying it early.
Please don't worry about the timing of it though. It isn't that important because you always have your finger prick and BG meter to fall back on even if there is a gap between the old one running out and the new one being applied or you can have two attached at the same time but once you start the new one by scanning it and telling it to start the old one will stop.

Having the new one applied and letting the old one expire sounds like a good idea. I will double check with the nurse when I see her tomorrow anyway but thanks for reassuring me. Have you had one on each arm before due to letting it expire before removing?

 

[rebrascora]

Having the new one applied and letting the old one expire sounds like a good idea. I will double check with the nurse when I see her tomorrow anyway but thanks for reassuring me. Have you had one on each arm before due to letting it expire before removing?

Yes I sometimes put the new one on before the old one expires but only by an hour or two if I am going to be busy later when it is due to expire and I won't be in a position to apply the new one. It is common practice with many people though to apply the new sensor the day before the old one runs out and just let the cells in contact with the filament get chance to settle down after a "foreign object" has suddenly appeared in their midst and then start the sensor the next day when the old one runs out, so having 2 on at the same time is absolutely not a problem.

 

[helli]

Have you had one on each arm before due to letting it expire before removing?

I always do this because the first day is unreliable whilst my body gets used to the alien object in my arm.
I insert the new sensor in my other arm at least one day before the old one expires and wait until the expiration of the old one before activating the new one.
Otherwise, I get a day of unusable readings from the sensor which is a waste.

 

[trophywench]

Well since I'm very used to removing cannulas I wasn't partic concerned about removing Libres, except that which middle disc is ruddy hard in comparison to a pump cannula sooooooo .....

Waggle your thumb nail under the edge of the stick 'halo' around it until your nail is just under the hard edge - and just peel - absolutely no effort whatsoever! Practically fall off, NP. definitely no pain and no discomfort.

 

[PattiEvans]

It's easier and less painful to remove than an ordinary sticky plaster!

 

[LittleSunflower]

Thank you so much everyone for your responses. I’d be sick with worry if it wasn’t for your reassuring replies! X

 

[everydayupsanddowns]

Sounds like you are doing great @LittleSunflower

Don’t worry too much about all these little (or even larger!) wobbles in your Libre graph. I have no way of knowing what BG chaos i was creating for the first 10-15 years of my pancreas impersonation career and my eyes are still OK.

All you can do is your best to try to limit the extremes of variations, but a bit of wobble is fine, and nothing to get stressed about. Just keep trying. 🙂

 

[LittleSunflower]

All went fine with the application of the new libre on my left arm and the removal of the one on the right. I let it expire fully and the nurse helped me with removal as the adhesive was super stuck to my skin, although the device itself was half hanging off.

@rebrascora I know the libre readings can be off for the first 24 hours but the low glucose alarm woke me 3 times last night!
I went to bed at a finger prick test of 10.3 (after my usual 2 digestives and milk) and woke up to the libre saying I was 4.4 with the arrow facing downwards at 2:59am so I tested my finger and it was a 5.1. I had a digestive biscuit, waited for it to digest and fell back to sleep. I was advised not to sleep with a reading lower than a 9 due to that nighttime hypo that happened the other week. So I aim for a 9-10.
I ended up having 2 digestive biscuits and half a chocolate digestive throughout the night. Before breakfast I was still only a 6.8.

I am only on 2 units of Levemir in the morning at the moment, I have been for nearly 2 weeks but today I only took 1 unit in the morning to avoid my level plummeting in the night again - we shall see what happens.
I’m still waiting to hear from the hospital
I believe the community nurse said because of my honeymoon period, I could end up not needing any insulin like @Inka explained previously, then I will need a higher dose when that period has ended?
I felt so silly injecting 1 unit this morning so it’ll be interesting to see what tonight holds!
Unfortunately, still no news on Novorapid (Inka won’t be pleased) but hoping to discuss this next week when I phone the hospital again. Yes, I will get answers from somebody in the healthcare team!

 

[Inka]

Don’t feel silly injecting one unit. I was on one unit basal for quite a while. You need what you need. 🙂 Yes, this sounds like your honeymoon. The insulin has probably allowed your remaining islet cells to rest and recover a little. That’s why early introduction of insulin for Type 1s is good. Even if a person only needs tiny amounts, it helps preserve the cells longer. When your honeymoon ends, you’ll notice your blood sugar going up and that you need more insulin. This happens gradually but sometimes in fits and starts.

Ha - you guessed right about my feelings on the Novorapid Good luck with your chat to the hospital next week. You’re doing great and honestly coping very well🙂