Advice please about glucose levels

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Beckyb300

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Type 1
Hi everyone,

I would really appreciate some advice. I was diagnosed with type one diabetes, four months ago. At first, my glucose levels came down (usually between 16-19) with insulin. I was on 15 units of long-lasting insulin and roughly 1:10 units for carbs.

The last few months have been awful. My glucose levels have been between 15 - 24 in the last two weeks. I’m massively struggling to get them down and I feel so poorly. The nurses have upped me to 40 units of long lasting and a carb ratio of 1:5. I also give myself a correction of 10 units as my glucose is always very high at night. This still doesn’t seem to be helping. Here are yesterday’s results following all that and barely eating due to nausea.

I would appreciate any advice on what to do or say to my diabetes team as I feel like nothing is working.

Thanks so much
 

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Welcome to the forum
I can't actually help but hopefully some of the others with Type 1 will be along soon. It would help them if you say what specific insulins you take and when.
Also do you have a means of testing for ketones as if high that can make you feel unwell. If not then it would be advisable to get some ketone urine dip sticks from the pharmacy, they are cheap.
 
Hi thanks for the reply. I take 40 units of levemir and my fast-acting is novorapid. I test my ketones and they tend to come down with the insulin just not my glucose levels.
 
Welcome @Beckyb300 Those are high levels. You say they’ve gone mad over the last couple of weeks. Can you think of any reason for that, eg a Covid vaccine, an illness, stress, etc?

When do you take your Levemir? And are you fingerpricking to check the highs?
 
The first thing to do is change to a new cartridge of insulin(s) just in case the ones you’re using have become degraded and ineffective. Then look at your Levemir. I hope you’re taking it twice a day?

That shoot upwards at midnight on your graph is very pronounced. Did you eat before bed? When did you eat your evening meal? What time did you do the 10 unit correction?
 
Thank you for replying. I do have a very minor UTI at the minute but they’ve been high for the last month. I take levemir twice a day - at 7am and 9pm usually. I don’t eat past 7ish but my levels always seem to shoot up around midnight and stay high overnight. I usually do the correction about 8 in the morning to try and bring me back down to 12ish. I was switched from glargine to levemir so I don’t think it’s the insulin but I’ll switch my novorapid to make sure.
 
I've not heard of some insulin types not working for some people, though definately try a fresh vial. You are storing your insulin in the fridge until you start using it? Using it within 4 weeks? It wouldn't be getting too near the cooling element and freezing. This would stop it working, same as if it got too hot. I keep mine in the door, near the top, in the egg bit.
May be worth ordering some new insulin and using it fresh from chemists, see if that makes a difference?
What are you eating? How many carbs per day is normal for you? Low carb can cause insulin resistance over time.
Have you checked the videos re taking insulin, air shots etc...just to be on safe side that your injection technique is ok.
 
I am concerned about the nausea when your levels are so high. Are you testing for ketones and if so, what sort of results are you getting? If not testing for ketones then you should be? If you don't have anything to test them with, find a pharmacy tomorrow which has Ketostix and buy some. You might need to ring around a few to find one with some in stock. They should be about £5-£10 for a pot of 50 and you dip them in your urine. If you continue to feel ill and levels remain high then I think you need to consider contacting 111 for advice or even 999. You can't mess with high BG levels that won't come down especially when you feel nauseous.

You say that they have upped your dose to 40 units of Levemir.... is that evenly split 20 in the morning and 20 at night.
I too am very shocked by that very fast and dramatic rise at midnight. Could you have forgotten to take your evening Levemir that night?

Excuse me asking a basic question but do you do an air shot every time you inject. Have you changed to a new box of needles in the last month? Someone recently had some that were not dispensing insulin, so doing that air shot and seeing the insulin come out is important.
 
Sorry, I must have missed the post when you talk about testing for ketones. When you say they come down with insulin how high are they coming down from?

Are you stressed about going to sleep. I have seen my levels shoot up like that with stress. Or could it be delayed glucose release from your evening meal.

Do you know why you are feeling nauseous? Do you have a bug or are you taking medication for the UTI which is making you feel sick.

If you don't mind me asking a personal question, what is your BMI? Just trying to work out if 40 units of Levemir should be enough for you and something else is going on or if you may have some significant insulin resistance as well as Type 1 diabetes and perhaps need much larger doses as a result. Were the nurses concerned about upping your Levemir so much? Did they suggest it may need to go higher or give you any advice about increasing it?

Where are you injecting your insulin? Ie which part of your body? It might be worth trying a different site if you are currently just using your tummy. ie thighs or buttocks.
 
Tdm said:
I've not heard of some insulin types not working for some people, though definately try a fresh vial. You are storing your insulin in the fridge until you start using it? Using it within 4 weeks? It wouldn't be getting too near the cooling element and freezing. This would stop it working, same as if it got too hot. I keep mine in the door, near the top, in the egg bit.
May be worth ordering some new insulin and using it fresh from chemists, see if that makes a difference?
What are you eating? How many carbs per day is normal for you? Low carb can cause insulin resistance over time.
Have you checked the videos re taking insulin, air shots etc...just to be on safe side that your injection technique is ok.
Click to expand...
Thanks for the advice. I usually eat around 40g of carbs a day - I have been wondering about insulin resistance as it sometimes makes no difference to my levels at all!

I was on insulin for gestational diabetes too so I’m pretty sure my injection techniques are okay. The insulin also brings my ketones down just not my glucose levels.
 
rebrascora said:
Sorry, I must have missed the post when you talk about testing for ketones. When you say they come down with insulin how high are they coming down from?

Are you stressed about going to sleep. I have seen my levels shoot up like that with stress. Or could it be delayed glucose release from your evening meal.

Do you know why you are feeling nauseous? Do you have a bug or are you taking medication for the UTI which is making you feel sick.

If you don't mind me asking a personal question, what is your BMI? Just trying to work out if 40 units of Levemir should be enough for you and something else is going on or if you may have some significant insulin resistance as well as Type 1 diabetes and perhaps need much larger doses as a result. Were the nurses concerned about upping your Levemir so much? Did they suggest it may need to go higher or give you any advice about increasing it?

Where are you injecting your insulin? Ie which part of your body? It might be worth trying a different site if you are currently just using your tummy. ie thighs or buttocks.
Click to expand...
Thanks so much for the reply. My ketones can go up to 1 but come down with my first novorapid shot.

I am sometimes a bit stressed (have a toddler) but I wouldn’t say every night.

I’ve been feeling on off nauseous since my diagnosis (5 months ago). I have been to both the diabetes centre and my gp a few times as I felt there might be something else going on but I find the diabetes centre say it’s not diabetes related and send me to the gp and they say it’s my levels and send me back.

I used insulin in my pregnancy so I don’t if that would affect my insulin resistance. My BMI is 27. The nurses have just been pushing it up for the last 2 weeks - they didn’t seem concerned.

I currently inject mostly in my stomach but sometimes my legs. I think the insulin is getting in my system as it brings the ketones down just not my glucose. Looking at my levels today, I’m wondering if it’s my levemir not working as I took 20 units at 9 and I’ve been high all night.
 

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Beckyb300 said:
Thanks for the advice. I usually eat around 40g of carbs a day - I have been wondering about insulin resistance as it sometimes makes no difference to my levels at all!

I was on insulin for gestational diabetes too so I’m pretty sure my injection techniques are okay. The insulin also brings my ketones down just not my glucose levels.
Click to expand...

That’s probably a big part of your problem then. Too few carbs cause insulin resistance, sometimes quite shockingly so. Up the carbs gradually (it takes your body a few weeks to adjust).

You mention Gestational Diabetes. Are you saying you were misdiagnosed as GD but actually had Type 1? That’s surprisingly common (assumed to be GD but actually the early stages of Type 1). Apologies for asking but what’s your BMI?
 
With a BMI of 27 you should not be suffering from any obvious insulin resistance, certainly not to the level that you are seeing. I follow a low carb way of eating and don't see any obvious problems with insulin resistance but I am a bit less strict with it and generally aim for 70-100g a day. It is certainly worth experimenting with a few more carbs to see if that makes a difference, much as it will probably be scary to do so when your levels are this high. Have you been injecting for protein release? Protein will start to release glucose about 2 hours after a meal if you don't eat enough carbs for your body to get sufficient glucose from them. I always have to inject about 2 units 2 hours after a meal as well as whatever insulin I needed up front for the carbs in my meal. Basically, my high alarm is set at 9.2 and when my high alarm goes off I inject 2 units. Sometimes it might continue to go up instead of come down and I may need another 1-2 units an hour later. I have learned that this is how my body works and I just proactively deal with it.

I have a rule that I simply don't eat when my levels are above 8mmols. I inject whatever correction I think I need and I wait and if it doesn't start to come down in an hour or so, I inject another modest correction until it does come down. I can always eat a jelly baby or two if I end up coming down too far too quickly, and I try to eat mostly when my levels are mid 5s, but being permanently high makes me feel rough and is not good for me and if my pancreas was working, this is what it would do... keep releasing insulin until levels came down. I think the rules about not stacking insulin corrections were more important when we were reliant on finger pricks, but now that we have CGM and alarms, I personally think we can be more aggressive with our corrections when necessary because we can keep a very close eye on how they are impacting us. I regularly need to stack corrections like this and I always have JBs close to hand just in case and I make sure to watch my levels closely whilst the correction insulin is active.

Once my levels get above 10 they are really tough to bring down and can take hours and take a lot more insulin than they should, so for me keeping them below 10 is really important and I will do whatever it takes to maintain that. Once you can keep them mostly in range, I am guessing you will need less insulin, but it is because they are persistently so high, that you are needing so much.
 
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May be insulin resistance. My bmi is low but i went down to a ratio of 1 to 3 basal insulin on low carb. When i upper my carbs my ratio went to 1 to 20. This is bolus...for me basal didn't change, not sure why.
Plus, having high glucose in itself means you need more insulin.
Either way, if new insulin doesn't work and you have checked injection technique, if it were me I would take more insulin to bring my levels down.
Do you do have a cgm? Setting you cgm low alarm to as high as it goes (eg 5, 5.5, poss 6) and have hypo tratment always on hand ( which it should be anyway) to keep yourself safe whilst you do so. Also, check cgm readings against a new pot of test strips. And test for those ketones!
I would then up carbs and down fats. In my experience, low carb is reassuring at first but its a shame to restrict your diet. I still do low carb at midday whilst working.
Of course, not everyone will get insulin resistant on low carb, but its wirth seeing if thats the root cause. When i went normal carb my insulin sensitivity increased in a week or so (it wasn't even on purpose...i had a kidney stone and took to comfort eating as i felt poorly)

Then, when you have your levels down, a basal test.

Let us know how it goes
 
Type one can be horrible. I go with rebrascora 's very sensible and careful advice. I am lucky with long term stable weight (75kg 6 ft tall) on about 100-125 gms of carb per day. You've got to get those BG levels down. I have some terrible ups and downs in BG like most of us and taking correction boluses at hour or so intervals seems the way. I sometimes have to inject quite large corrections when the pumped insulin doesn't have much effect and then about six hours after my BGs suddenly come down. Can you get a pump? Life is much easier with a pump and CGMs.
Type 1 since 1956, on a Medtronic 640G pump with Guardian 3 sensor about to change to 780G with Guardian 4 CGM. HbA1C 7.4, 30 units Novarapid a day
Good luck, you will get there!
 
Thank you so much for your advice. The last few months have been very challenging so thanks for responding.

I’m definitely going to try going higher carb and seeing if it changes things. I’m also going to program my Libre to alert me at 9.5 to try and keep me in range.

I had gestational diabetes when pregnant which was controlled with insulin and only went over 10 twice so finding it hard that my levels seem so random now!
 
The reason I asked about the GD was that I was wondering if you were actually Type 2 @Beckyb300 How long after your pregnancy did you develop Type 1?
 
Hi, I had gestational diabetes about 20 months ago and then had my HBA1C test after I had my baby which came back at 36 at Christmas. I started getting symptoms in Easter and assumed it probably would be type 2 but I ended up in A&E with DKA in June. They did antibody and cpeptide tests which came back positive and 0.15 and my consultant said it’s definitely type 1.
 
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