I would like some support through this difficult journey

[MeiChanski]

I know that feeling FWIW it's normal to set a blood sugar alarm at a level such that it goes off before things go bad, so you're not in that bad state. Mine is at 4.5 low, 9 high (I'm less worried by high). I know this doesn't help if you don't have one, but should that change in the future, it's worth knowing.

Thank you, I'll try to incorporate it into my nightly routine for a BG testing lets say 1-2am. Looking at the libre graph, I think thats where the diabetes gets into party mode and tumbles it's way down.

 

[MeiChanski]

A short update, I have contacted both my GP and Warwick hospital. GP surgery said they don't have a diabetes nurse in their office to give diabetes advice. So I contacted Warwick hospital and it was an answer machine so I left a message as a matter of urgency.

 

[kitedoc]

Hi @MeiChanski,
Can you please provide the Libre readings you are writing about, plus others in the 24 hours, what your insulin types and doses are for each day and an idea of what food you are eating and when?
Some BSL readings (meter not Libre) around the trouble time and other parts of the day could be useful also.
Thank you.

 

[MeiChanski]

Hi @MeiChanski,
Can you please provide the Libre readings you are writing about, plus others in the 24 hours, what your insulin types and doses are for each day and an idea of what food you are eating and when?
Some BSL readings (meter not Libre) around the trouble time and other parts of the day could be useful also.
Thank you.

Hello Kitedoc!

I'm on novorapid and levemir but currently been advised by my new consultant to give tresiba a try. I've been on tresiba for 5 days at the moment. I am taking 8 units of tresiba, I was on 5 units and 6 units of levemir split, novorapid is anything between 4-8 units per day.

I am eating mostly fruit - banana and an apple and a brevita soft bake biscuit in the mornings (around 8am) with a coffee, sugar free syrup (0 net carbs) and oat milk (100ml is around 6g carbs, I don't count insulin for it). Lunch (around noon-13:00) is anything between 150g-200g of rice, along with stir fry or egg toastie - unfortunately my bf prefers white bread, or a cheesy omelette) and I have a snack around 17:00, again any fruit I can find. lastly dinner is around 18:00-20:00, quite late. again rice with stir fry chicken and veggies or pork, mashed potatoes and veggies or fakeaway chinese.
Bed time is around 22:30-23:30, I'd have a snack too, not because of a hypo. im just generally hungry .

Oh dear me, you've been me to work. I couldn't download anything from the libre app to my computer. so I did things manually. So apologies if it's not in chronological order.

 

[MeiChanski]

I couldn't upload my BG readings from my meter.
So I decided to type it.
10th April
16:18 7.6
14:09 4.0
11:51 13.1
10:24 11.4
08:47 10.6

9th April
21:38 3.5
19:41 3.1
18:45 4.1
18:13 5.2
15:03 13.1
14:10 13.1
13:26 9.7
04:24 2.6

8th April
19:23 5.6
18:56 4.2
14:36 8.0
12:52 4.9

7th April
19:25 5.2
18:53 6.1
18:13 7.5

 

[MeiChanski]

I don't know if this is any of help either.

 

[MeiChanski]

The 24 hour graph

 

[kitedoc]

Thank you @MeiChanski, thank you for all that work!!!
I know you have done the course and appear to be following the DAFNE approach.
Ask yourself whether it is really working for you?
During 50 + years on insulin no diet really worked well for me including DAFNE.
And that includes with an insulin pump for the last 6 + years. Just my personal observation.
Recently something different did work but you need to try out all you can with what you have
been educated about first.
If that starts to work better for you you have a way forward.
If you have given it your all and the results are just not enough, too many highs and lows
something else might help.
Not a guarantee and not without effort but doable !!
Best Wishes

 

[MeiChanski]

Thank you @MeiChanski, thank you for all that work!!!
I know you have done the course and appear to be following the DAFNE approach.
Ask yourself whether it is really working for you?
During 50 + years on insulin no diet really worked well for me including DAFNE.
And that includes with an insulin pump for the last 6 + years. Just my personal observation.
Recently something different did work but you need to try out all you can with what you have
been educated about first.
If that starts to work better for you you have a way forward.
If you have given it your all and the results are just not enough, too many highs and lows
something else might help.
Not a guarantee and not without effort but doable !!
Best Wishes

No problem, I'm inbetween with DAFNE, it works sometimes and sometimes it doesn't due to various other reasons. I like their sick day rules and alcohol beverages advice. We could argue if we ate the same 3 meals a day and inject the same amount of insulin for those meals, we either end up high or low or okay. you'll have to enlighten me about the new thing. i'm all eyes and ears. Everything is doable, I am positive that I will get through this summer without dangerous hypoglycemia and get through my last year of university.

 

[Fairygodmother]

It sometimes goes awol for me if I over-correct for highs and fail to take the liver dump into account after a low. I wonder if you’re facing that kind of merry-go-round?

 

[MeiChanski]

It sometimes goes awol for me if I over-correct for highs and fail to take the liver dump into account after a low. I wonder if you’re facing that kind of merry-go-round?

I've been experiencing the liver dumping after a hypo, then go high after treating it. I usually don't go extremely high after eating something as simple a bread.

 

[Fairygodmother]

I've been experiencing the liver dumping after a hypo, then go high after treating it. I usually don't go extremely high after eating something as simple a bread.

Yes, I always need to keep a close eye on it after treating and often have to correct more than once if I’ve been too hesitant.

 

[MeiChanski]

Yes, I always need to keep a close eye on it after treating and often have to correct more than once if I’ve been too hesitant.

I agree, thank you, It's a bit strange because my boyfriend and I always measured the amount of fast acting carbs, such as coke before I consume it. So I guess I'll keep a stricter eye on my BG.

 

[UK T1]

Hello! Thank you, I'm just baffled about how it would work because normal food and split dosage is slightly different than eating greasy/fatty foods for split dosage. I am also scared about running high because having a high BG does not feel good whatsoever, it's like I've lived in the desert for a day without water. Does it mean I'll have to break some DAFNE rules if I were to eat half my meals before injecting? I'd have to ask my consultant at some point. XD

Hi,
Yes, I'm aware this doesn't follow advice from a nurse/consultant but their advice was often hard to follow/unrealistic (eg. Always inject before a meal and split doses all the time rather than just inject say 10 mins after I started eating - I'd have got through about 8-10 needles a day as I eat little and often, usually 4 meals a day and split my levemir morning and evening so I bet their next complaint would have been my needle prescriptions!).

Personally I have always found the on call nurses at my diabetes centre fantastic, and more than happy to help even if it was just a 2 min call. My GP surgery doesn't have specialists for diabetes either so if they have tried restricting my prescriptions (or once changed my novorapid cartridges, which I use with my Echo pen to get 0.5 unit increments, for prefilled pens which only did 1 unit increments and was bizarrely 10p more expensive per box!) the diabetes centre nurse was fab and quickly wrote them an email explaining exactly which product should be prescribed and why.

As for going high, because I'm not delaying the injection much I really don't notice that I do go high, I eat quite slowly so think I'm just aligning when the insulin takes effect with when I've started digesting. It's a habit I'm now in. I have to say I usually feel quite ill with symptoms if my blood hits 9/10mmol ish, but don't notice that happening after meals, instead it did stop me from hypo-ing at the end of meals which was a relief to say the least!

Best of luck with the hospital! My centre runs their own version of DAPHNE including one off things so it might be worth seeing if they have anything similar to meet T1s in your area perhaps?

 

[Fairygodmother]

I agree, thank you, It's a bit strange because my boyfriend and I always measured the amount of fast acting carbs, such as coke before I consume it. So I guess I'll keep a stricter eye on my BG.

I’ve found that the Dafne rules are a good foundation but it’s very easy to enter a less well-ordered world of multi-reaction factors with T1.
I think the combination of a basal test a few times a year to confirm or adjust the Levemir plus a reading of Stephen Ponder’s Sugar Surfing has helped me. However, there are always those odd frustrating days when T1 just gets away and behaves like a toddler having a tantrum or a puppy in a split feather pillow.

 

[MeiChanski]

Hi,
Yes, I'm aware this doesn't follow advice from a nurse/consultant but their advice was often hard to follow/unrealistic (eg. Always inject before a meal and split doses all the time rather than just inject say 10 mins after I started eating - I'd have got through about 8-10 needles a day as I eat little and often, usually 4 meals a day and split my levemir morning and evening so I bet their next complaint would have been my needle prescriptions!).

Personally I have always found the on call nurses at my diabetes centre fantastic, and more than happy to help even if it was just a 2 min call. My GP surgery doesn't have specialists for diabetes either so if they have tried restricting my prescriptions (or once changed my novorapid cartridges, which I use with my Echo pen to get 0.5 unit increments, for prefilled pens which only did 1 unit increments and was bizarrely 10p more expensive per box!) the diabetes centre nurse was fab and quickly wrote them an email explaining exactly which product should be prescribed and why.

As for going high, because I'm not delaying the injection much I really don't notice that I do go high, I eat quite slowly so think I'm just aligning when the insulin takes effect with when I've started digesting. It's a habit I'm now in. I have to say I usually feel quite ill with symptoms if my blood hits 9/10mmol ish, but don't notice that happening after meals, instead it did stop me from hypo-ing at the end of meals which was a relief to say the least!

Best of luck with the hospital! My centre runs their own version of DAPHNE including one off things so it might be worth seeing if they have anything similar to meet T1s in your area perhaps?

Hello! before DAFNE and when my consultant decided to change me from mixtard 30 to novorapid and levemir, I was told it was okay to either take it before eating or after eating. Since I did DAFNE, I had my hair ripped out by my DSN for taking insulin after food. She did not look happy Back in SE london, doctors were not happy with me using up test strips and novorapid before my next prescription. But they were fantastic for getting back to me as well and at that time she had nothing against me for asking for more novorapid. Since I moved, I have yet to develop a conclusion because DSN hasn't got back to me yet.

For me, it depends on what im eating, usually sauces like sweet and sour sauce kicks in quite quickly and white bread. So I notice i'm running high after eating and if I took my insulin after. However before the libre sensor and the DAFNE course, taking my injection after and waiting until my next meal, i'm not running high. With my sensor I'm noticing i'm running high after food within the first hour, then drop and settle. So I don't really see a difference if I were to take my insulin before or after, i'm running high either way and will settle. I have yet to experience where I don't run high after food, along with liver dump in the mornings.

 

[evilclive]

My GP surgery doesn't have specialists for diabetes either so if they have tried restricting my prescriptions (or once changed my novorapid cartridges, which I use with my Echo pen to get 0.5 unit increments, for prefilled pens which only did 1 unit increments and was bizarrely 10p more expensive per box!)

An aside from the main discussion :

If you're in that situation, and haven't managed to get the prescription changed before getting the prefilled pens, it's worth comparing the sizes/dimensions of the vials in the prefilled pens to a normal cartridge. On novo cartridges, the screw thready bit can come off the end of an old one and will go on other 3ml cartridges, so if the dimensions were identical, it would work. (assuming 100u insulin, ie not Toujeo - but that's 1.5ml cartridges so won't fit anyway).

(never quite got the courage to do this for lantus in a novopen, even though I much preferred the novopen to the pen I had for Lantus. Fortunately on levemir now. But I did take cartridges out of a prefilled pen and use it in the matching refillable one - just can't remember the brand)

CAVEAT : Obviously you mustn't even think about using cartridges in pens they're not designed for, just as you mustn't use xdrip etc for medical purposes.

 

[MeiChanski]

I’ve found that the Dafne rules are a good foundation but it’s very easy to enter a less well-ordered world of multi-reaction factors with T1.
I think the combination of a basal test a few times a year to confirm or adjust the Levemir plus a reading of Stephen Ponder’s Sugar Surfing has helped me. However, there are always those odd frustrating days when T1 just gets away and behaves like a toddler having a tantrum or a puppy in a split feather pillow.

Basal test like fasting until noon to check or do the 3am test to check? One guy in my DAFNE course did the fasting to check levemir and he was told the day before he could only have a palm size of protein, so either an egg or a small piece of chicken. He looked very sad when he couldn't eat his whole lunch. I have seen a few recommendations on sugar surfing, maybe it'll be another excuse to order books again. hehehehe. Indeed, I often feel like a human pin cushion thats been punched by mike tyson a few times.

 

[Fairygodmother]

Basal test like fasting until noon to check or do the 3am test to check? One guy in my DAFNE course did the fasting to check levemir and he was told the day before he could only have a palm size of protein, so either an egg or a small piece of chicken. He looked very sad when he couldn't eat his whole lunch. I have seen a few recommendations on sugar surfing, maybe it'll be another excuse to order books again. hehehehe. Indeed, I often feel like a human pin cushion thats been punched by mike tyson a few times.

https://mysugr.com/basal-rate-testing/
http://www.stmichaelshospital.com/pdf/programs/diabetes/basal-rate-testing.pdf
Here are a couple of sites that set out what’s involved in a basal test - it’s pretty rigorous so it’s wise to do each section of the day with a few days off in between them.
Another thought, does your insulin pen do half units? I use a novopen echo with Levemir and Fiasp. I’ve got a blue one and a red one so I don’t mix them up. Being able to inject half units gives more wriggle room.
When I used novorapid I knew that it’d be at least 20 minutes before the injected insulin became active in my system so I always pre-bolus, unless my blood sugars are below 4.5. I also try to avoid foods with a high sugar content as they can spike my blood sugar - sugar’s not got as small a molecule as glucose but it’s pretty rapidly taken up.
I also like a proportion of high fibre carb in meals, partly for the taste and partly as uptake will have a steadier profile.
That’s just me though. One thing this site reveals is that we’re all different

 

[MeiChanski]

https://mysugr.com/basal-rate-testing/
http://www.stmichaelshospital.com/pdf/programs/diabetes/basal-rate-testing.pdf
Here are a couple of sites that set out what’s involved in a basal test - it’s pretty rigorous so it’s wise to do each section of the day with a few days off in between them.
Another thought, does your insulin pen do half units? I use a novopen echo with Levemir and Fiasp. I’ve got a blue one and a red one so I don’t mix them up. Being able to inject half units gives more wriggle room.
When I used novorapid I knew that it’d be at least 20 minutes before the injected insulin became active in my system so I always pre-bolus, unless my blood sugars are below 4.5. I also try to avoid foods with a high sugar content as they can spike my blood sugar - sugar’s not got as small a molecule as glucose but it’s pretty rapidly taken up.
I also like a proportion of high fibre carb in meals, partly for the taste and partly as uptake will have a steadier profile.
That’s just me though. One thing this site reveals is that we’re all different

Thank you so much!My pens does whole units and not half units, so I have to either round up or down for carb amounts. (my pens are as old as my diabetes diagnosis ) Do you think I should ask for half unit pens? I did try one morning where I was slightly high from liver dump, so I took a small amount of novorapid and went to do washing up and laundry, then came back I was normal and ready to eat breakfast, it also settled quite nicely in time for lunch. But sometimes i'm too hungry and would go in before novorapid kicks in and face consequences later. I don't consume high sugar foods often, I do make my own takeaways hence homemade sweet and sour sauce does kick in quite quickly. High fibre does indeed sound good, and I agree it gives a more steady control. I think protein does something similar but my BG does slightly go up, only slightly, nothing compared to something sugary.