Feel like I’ve not been listened to

[PhoebeC]

So for anyone who hasn’t seen my previous post, I’ve been having okay levels before bed and then it’s been sneaking way up 14-18 about 1am. I am not having a hypo. The Libre shows it going up and up and there is no break in readings, and I checked on my freestyle meter too.
So I spoke to a nurse this morning (not the diabetes nurse, despite me asking to speak to one) And she said to send over my results and she would speak to the diabetes nurse. So I did.

Just had call with the nurse again. She’s well out of her depths.

So she advised me I am probably having a hypo in the night (I am not)
That 7-8 is too low to go to sleep (it’s not)

And based on these two wrong points I should reduce my Lantus from 20 to 16 and my tea time novo from 12 to 10
The offered to book me in for a check up in two weeks.

So I explained again, I am not having a hypo in the night, it’s not the Dawn Phenomenon and I need help quickly. That the Libre is correct and recording what happens.

It scares me they would give out this advice based on not seeing the results.

I never ask for medical help, for this reason!

so I have a call with the diabetes nurse tomorrow. Hopefully she will have actually seen my Libre results.

I actually need help and am not getting it

 

[Amity Island]

So for anyone who hasn’t seen my previous post, I’ve been having okay levels before bed and then it’s been sneaking way up 14-18 about 1am. I am not having a hypo. The Libre shows it going up and up and there is no break in readings, and I checked on my freestyle meter too.
So I spoke to a nurse this morning (not the diabetes nurse, despite me asking to speak to one) And she said to send over my results and she would speak to the diabetes nurse. So I did.

Just had call with the nurse again. She’s well out of her depths.

So she advised me I am probably having a hypo in the night (I am not)
That 7-8 is too low to go to sleep (it’s not)

And based on these two wrong points I should reduce my Lantus from 20 to 16 and my tea time novo from 12 to 10
The offered to book me in for a check up in two weeks.

So I explained again, I am not having a hypo in the night, it’s not the Dawn Phenomenon and I need help quickly. That the Libre is correct and recording what happens.

It scares me they would give out this advice based on not seeing the results.

I never ask for medical help, for this reason!

so I have a call with the diabetes nurse tomorrow. Hopefully she will have actually seen my Libre results.

I actually need help and am not getting it

Hi Phoebe,

It's not protein conversion is it? I can get this exact same problem if I have meat/chicken/fish with evening meal. Everything fine, then about 5hrs after meal I get a upturn in blood sugars.

 

[PhoebeC]

Hi Phoebe,

It's not protein conversion is it? I can get this exact same problem if I have meat/chicken/fish with evening meal. Everything fine, then about 5hrs after meal I get a upturn in blood sugars.

I’ve no idea, if it is then it’s okay just started. A week or so again.
How do I find out?
I’m willing to try anything

 

[Bruce Stephens]

I’ve no idea, if it is then it’s okay just started. A week or so again.
How do I find out?
I’m willing to try anything

I think (absent any useful advice from your DSNs) eating a bit less in the evening for a few days. The graph looks to me like it could be caused by slow (or at least delayed) digestion of the evening meal (or at least, it's consistent with something like that) so maybe try and eat something that's easy to digest and see what happens later.

I've no idea what would cause that to happen suddenly. (Well, there are some obvious things but you'd know they'd happened. If you'd recently started drinking a glass or two of wine with your meal, or had increased your evening meal size.)

It's certainly frustrating that your healthcare team apparently won't look at the graphs. We've got this wealth of data they can use and (in your case) they don't seem to be really trying. Back in the old days, a hypo at night would be plausible and really tricky to rule out, but with a Libre they can just look and see that it's not happening.

 

[Ljc]

It scares me too. (Hug). I am sorry to say that until I met my current DN I had a very low opinion of all of my DN’s in regards to diabetes info , even the foot checks were laughable, so you have my sympathy.

I trust you will get some helpful advise from your DSN and your able to solve your problem .

I am wondering if that nurse knows/understand what info a Libre gives us

 

[leonS]

Could it be that you simply need to increase your long acting insulin?

The hypo-in-the-night is not supported (according to Abbot) by the data in any case. I would never change the dose by such a large amount as 4 units EVER!

Protein will eventually be converted to glucose if not needed for other things. Just avoid protein rich foods for a few nights to see if this helps.

If this were my problem I would increase the long acting insulin by a sibgle unit and see if that improves matters, but a base test would be the best way to go.

 

[PhoebeC]

So tycial this has happened when I am the most busy I have ever been at work. I literally have not got the time to spend on messing about, I know I have to and I will, but it is really not ideal.

It was just the way she was like 'then we will book in a check up in two weeks', I shouldn't have had to wait 30+ hours since I booked the appointment, if my levels are at 18 really, for no answer.

Sometimes this illness can be so isolating, when help is hard to get! Thank you for the suggestions.

I will try less protein, which is the best food ha! and then increasing the long acting, and not having the 2 units of fast with it, that has been the only way I have had okay levels during the night and got more than 6 hours sleep.

 

[Northerner]

I've had conundrums like this in the past, although obviously my situation is more than likely to be unlike yours 🙄 My insulin requirements can vary quite a bit over time, and what I've found is that when my requirements are quite low then the insulin for my evening meal can be 'spent' whilst my food is still digesting, which can result in my levels than climbing at bedtime. I'm fortunate because my pancreas is still working sufficiently to bring levels back down overnight, but I appreciate that is a very difficult thing to manage on injections.

One thing that may help is that I know my insulin releases much more slowly from my (ahem!) posterior than from my abdomen and this can therefore result in it remaining active for longer, so changing injection sites might yield some benefit 🙂

 

[PhoebeC]

One thing that may help is that I know my insulin releases much more slowly from my (ahem!) posterior than from my abdomen and this can therefore result in it remaining active for longer, so changing injection sites might yield some benefit 🙂

So abdomen for tea also

I am just going to try everything in the hope that one if it works, and then I will try and work out which thing. I don't like doing my lantus in my tummy, but I will give it ago.

All the corrections have made me more like a pin cushion than normal, and I have never had a lot to work with anyway so that's an added fun game, find a suitable spot.

My requirements have massily changed since lockdown anyway, which is super annoying, I was on 4,6,10 for meals, it is now 10,10,12 urgh!

 

[trophywench]

Phoebe - I have run out of bright ideas, but truly personally know for a fact that the stress and frustration your diabetes is currently causing are absolutely NOT helping whatever in any way - especially with your flipping diabetes! Damn vicious circle.

I ask you a simple question. If you go off sick from work - is anyone going to die?

 

[Goldiebrowse]

So abdomen for tea also

I am just going to try everything in the hope that one if it works, and then I will try and work out which thing. I don't like doing my lantus in my tummy, but I will give it ago.

All the corrections have made me more like a pin cushion than normal, and I have never had a lot to work with anyway so that's an added fun game, find a suitable spot.

My requirements have massily changed since lockdown anyway, which is super annoying, I was on 4,6,10 for meals, it is now 10,10,12 urgh!

I found that my carb ratio varies significantly depending on how busy I am and also the weather (summer I reduce my insulin, winter I increase) and I’m just as busy. Since starting cycling I’ve reduced my background by 4 units over period of 10 weeks but I’ve also found certain foods impact my levels significantly especially things like whole meal bread (I have for toast in morning). I used to suffer dawn syndrome but when they changed my insulin and put me on the libre I got that under control. I suffer night hypos especially following days exercise but I can see these much easier with the libre, injection points are literally a bit of a sore point but can make all the difference due to absorbing and reaction rates so depending on foods you eating you may also need to change injection sites. Like you say it truly is frustrating when health care professionals dismiss us, I sometimes wonder who is educating who. Best of luck and you are not alone

 

[PhoebeC]

Phoebe - I have run out of bright ideas, but truly personally know for a fact that the stress and frustration your diabetes is currently causing are absolutely NOT helping whatever in any way - especially with your flipping diabetes! Damn vicious circle.

I ask you a simple question. If you go off sick from work - is anyone going to die?

No. And last week I moved my day off around, because I felt so rotten on Tuesday. It would always typically be the busiest week, like that one major week I need to just crack down to it. It’s just how life is.

I’ve had a nearly perfect day today, even with that weird thing I’m 70% in range. Which is more annoying because, I want it to be perfect for sleep too!

 

[PhoebeC]

I found that my carb ratio varies significantly depending on how busy I am and also the weather (summer I reduce my insulin, winter I increase) and I’m just as busy. Since starting cycling I’ve reduced my background by 4 units over period of 10 weeks but I’ve also found certain foods impact my levels significantly especially things like whole meal bread (I have for toast in morning). I used to suffer dawn syndrome but when they changed my insulin and put me on the libre I got that under control. I suffer night hypos especially following days exercise but I can see these much easier with the libre, injection points are literally a bit of a sore point but can make all the difference due to absorbing and reaction rates so depending on foods you eating you may also need to change injection sites. Like you say it truly is frustrating when health care professionals dismiss us, I sometimes wonder who is educating who. Best of luck and you are not alone

Thank you!

 

[Deleted member 27171]

Hi @PhoebeC - Glad you will be speaking with the DSN tomorrow, let us know if you get a more helpful response. I can't offer any suggestions, but hopefully something that has been mentioned will help.
Thank goodness you do have the Libre and the understanding to make not following the advice from the nurse an easy decision. Very frustrating response, hopefully the DSN can give the practice nurse(?) a lesson in diabetes management.

 

[PhoebeC]

Thank you all! I basically followed everything you suggested, so went low protein, 12 units rather than 10, tummy for both my novo and then lantus.
So it’s better than it has been, it’s still raising to about 12ish at 1am and but last night it actually slowly dropped back down, which it wasn’t before, I went to bed at 4.9 (scary) and then woke 7.4, but like I said that peak in the night!
Nurse suggested upping the Lantus by 2-4 upto me, and seeing how I get on. call next week to check up.
Again she said I was the expert on my own condition, I know they mean well by it but I would like an expert help sometimes. And we ever it is other diabetics! Thank you xx

 

[Bruce Stephens]

Nurse suggested upping the Lantus by 2-4 upto me, and seeing how I get on. call next week to check up.
Again she said I was the expert on my own condition, I know they mean well by it but I would like an expert help sometimes.

OK, that advice on Lantus at least makes sense. As to you being the expert, I fear that's right; DSNs have lots of experience (of different patients) which can be really valuable, but sometimes weird things happen.

 

[Amity Island]

Thank you all! I basically followed everything you suggested, so went low protein, 12 units rather than 10, tummy for both my novo and then lantus.
So it’s better than it has been, it’s still raising to about 12ish at 1am and but last night it actually slowly dropped back down, which it wasn’t before, I went to bed at 4.9 (scary) and then woke 7.4, but like I said that peak in the night!
Nurse suggested upping the Lantus by 2-4 upto me, and seeing how I get on. call next week to check up.
Again she said I was the expert on my own condition, I know they mean well by it but I would like an expert help sometimes. And we ever it is other diabetics! Thank you xx

Phoebe,
I couldn't I agree with you more about sometimes needing "experts" help even though you are the expert. I've only ever asked for help once in all the years I was diabetic, all I got was huffing and puffing down the phone, and not you again! after I rang 3 times in 25 years.

We need some kind of new system in healthcare, actually; a new system in all parts of life and work. It's just not enough for a nurse (or anybody) to have the right qualifications, they must also have the right attitude! They go hand in hand. There are way too many people doing jobs just for the money, not enough people interested in what they are doing.

Your point about them not believing the libre graph, shouldn't be happening. The libre should be putting an end to all this silliness about believing what the patient is telling them. It's hard proof. With the finger pricking blood tests, they could always avoid doing things properly by blaming the patient, but now with the libre, this shouldn't be happening anymore.

 

[Bruce Stephens]

So it’s better than it has been, it’s still raising to about 12ish at 1am and but last night it actually slowly dropped back down, which it wasn’t before, I went to bed at 4.9 (scary) and then woke 7.4, but like I said that peak in the night!

That's at least not horrible (so with any luck you'll be able to sleep easier). Maybe Lantus isn't quite right for you, or maybe you need a pump. (Or maybe this'll just be one of those temporary things and you'll be back to something more like normal by next week.)

 

[atoll]

i have this problem sometimes with novo rapid that is in use and kept outside the fridge and if the same penfil has been in use for more than 3 weeks,apparently it loses effectiveness.
change to a new penfil to eliminate this as a possible cause

 

[trophywench]

I used to get that too sometimes atoll and it usually happened in summer even if like today, it wasn't actually all that warm.