Help needed!

[Michele01]

Hello lovely forum - apologies in advance for a LONG post but I really need your help.

I was diagnosed as type 1.5 several years ago, then got cancer and so I never actually went on a food awareness course (although I now realise I'm in desperate need of one. The good news is that my Hba1c is 48 despite that. HOWEVER, whilst I thought that was good (and so did my endo), it appears I've only achieved that by having huge peaks and troughs. I take Levemir in the morning and before bed and Novarapid before meals. My endo suggested that I was over using the Levemir in the evening and wanted me to reduce this to avoid the early morning hypos and I've also had a Libre2 fitted - which I've been using for almost 2 weeks.

So before the convo with my Endo and Libre2 fitting I was taking (on average):

On waking - 24 units of Levemir / A variable amount of Novarapid but generally if on waking I was at 8 I would take 4 units. I basically just took the amount of units to bring me down to 4 (mathematically) if that makes sense?
No breakfast (ever)
Before lunch - Between 12-16 units of Novarapid - just based on a "I think that may be more bad for me" gut feeling.
Dinner - Typically 18 units of Novarapid.
Before bed (quite late) - Normally 24 Levemir

Clearly all of that was contributing to the peaks and troughs and based on nothing more than gut feeling.

So my Endo wanted me to reduce my Levemir in the evening to 16 or less (which I've done) but I'm still getting hypos. Looking at it logically, my morning Levemir is lasting from 8am to around midnight so I shouldn't be taking nearly as much more bedtime OR should take it earlier AND maybe reduce both doses. However although I think the Levemir was part of the issue, I don't think it was contributing to the hypos.

However, this is where I'm struggling with a number of issues:

1. I'm trying to count carbs and it doesn't seem to be working for me. For example I just had a hypo (3.3) and ate a 24g packet of hula hoops that contain 16g of carbs. So that equates to around 2 units of insulin if I was eating it without having a hypo (I think) - clearly I haven't taken any insulin! However, it's pushed my level up from 3.3 to 9.7 in just under an hour. If my body is reacting to a small portion of carbs in this way, it's no wonder I'm having huge spikes after my evening meal!!!!! Is this normal?

2. I've reduced my Novarapid to between 10 and 14 units before my evening meal but I'm getting huge spikes (up to 20). I then take my Levemir before bed (now reduced to 10) but my Libre2 graph shows my levels decreasing all the time until I get a low level alarm around 6am under 4). So how do I take the right amount of Novarapid to stop the peaks and troughs and avoid the hypos in the early morning?

3. I seem to be able to control my levels during the day but do have hypos in the late afternoon which suggests to me something is going wrong with the lunchtime insulin levels (probably both long and short acting). A typical day for me now is:

On waking - 22 Levemir / variable Novarapid (as above) - no change just slightly less Levemir
Before lunch - 8-10 units of Novarapid (a reduction from 12-16 before)
Before dinner - 8-12 units of Novarapid (a reduction from 18 before)
Before bed - 10 units of Levemir (reduced from 24 before)

I'm sorry for the long convoluted post and I really hope some of you seasoned diabetic professionals can help me. I will be having a review with my Endo in 3 weeks but want to try and get a grip of things before then and I certainly want to get rid of the hypos. Thank you so much for reading x

 

[Lisa69free]

I'm newly diagnosed T1 since last month and I'm enjoying the research. If you are 8 in the morning when you wake, I've been told unless it's over 10 just before a meal to take 1 unit of fast acting per 3 you are too high. So if ideal is 5 then you only need to take 1 unit more insulin to bring that down plus an amount for next meal.

 

[Michele01]

I'm newly diagnosed T1 since last month and I'm enjoying the research. If you are 8 in the morning when you wake, I've been told unless it's over 10 just before a meal to take 1 unit of fast acting per 3 you are too high. So if ideal is 5 then you only need to take 1 unit more insulin to bring that down plus an amount for next meal.

Thank you for replying. Does it appear to work for you? I'm not sure 1 unit would touch the sides for me I'm afraid. I think it's all about trial and error isn't it?

 

[Marie 2]

It is harder to pinpoint your bolus for foods if your basal rate is wrong. When you are on a MDI regimen you want the lowest amount of basal so you don't drop too much at any point of the day. Basal is not supposed to help with food, only what your liver makes. So you need to do a basal test. You can split that up into sections of the day if it makes it easier for you. I have a feeling it's off so it will probably take several attempts with adjustments to get it down right.

You have to carb count to have any kind of decent control. Gut guessing amounts will lead to highs and lows, weight gain etc. We get better at guessing and we all do, but when you don't really know basic carbs in the foods you eat it will not work. The same goes for set doses unless you are eating the exact same thing. What happens when you eat a bowl of spaghetti at 50 carbs versus a bowl of veggies with a protein with 15 carbs? A far difference in carb counts and insulin requirements.

So I suggest you start with basal testing. Also start carb counting and it will help you at first to make some notes of the carbs you are eating and the dose you took. Then make notes of your BG readings over the next 1-6 hours. The Libre makes that a lot easier. You can then use that information to know better what bolus amounts you need. Keep in mind insulin can work up to 6 hours, but the bulk of it is used within the first 3 hours with a trailing effect after.

Good luck, but you really need to carb count.

https://integrateddiabetes.com/basal-testing/

https://www.mysugr.com/en/blog/basal-rate-testing/

 

[EllieM]

I'm newly diagnosed T1 since last month and I'm enjoying the research. If you are 8 in the morning when you wake, I've been told unless it's over 10 just before a meal to take 1 unit of fast acting per 3 you are too high. So if ideal is 5 then you only need to take 1 unit more insulin to bring that down plus an amount for next meal.

Unfortunately just as people's insulin to carb ratios vary so do their insulin correction doses. Plus if @Michele01 doesn't eat breakfast, she may possibly but not necessarily need some extra insulin just to get over the dawn phenomena (liver dumps sugar first thing in the morning.) Insulin doses and sensitivity is so variable that you can't share dosing amounts with others, though you can share calculation techniques.

I agree with @Marie 2 , the first thing to sort is the basal, because if that is wrong it completely undermines any attempts to calculate correction doses or insulin carb ratios.

Michele, do you know if you are still producing any of your own insulin?

 

[Michele01]

It is harder to pinpoint your bolus for foods if your basal rate is wrong. When you are on a MDI regimen you want the lowest amount of basal so you don't drop too much at any point of the day. Basal is not supposed to help with food, only what your liver makes. So you need to do a basal test. You can split that up into sections of the day if it makes it easier for you. I have a feeling it's off so it will probably take several attempts with adjustments to get it down right.

You have to carb count to have any kind of decent control. Gut guessing amounts will lead to highs and lows, weight gain etc. We get better at guessing and we all do, but when you don't really know basic carbs in the foods you eat it will not work. The same goes for set doses unless you are eating the exact same thing. What happens when you eat a bowl of spaghetti at 50 carbs versus a bowl of veggies with a protein with 15 carbs? A far difference in carb counts and insulin requirements.

So I suggest you start with basal testing. Also start carb counting and it will help you at first to make some notes of the carbs you are eating and the dose you took. Then make notes of your BG readings over the next 1-6 hours. The Libre makes that a lot easier. You can then use that information to know better what bolus amounts you need. Keep in mind insulin can work up to 6 hours, but the bulk of it is used within the first 3 hours with a trailing effect after.

Good luck, but you really need to carb count.

https://integrateddiabetes.com/basal-testing/

https://www.mysugr.com/en/blog/basal-rate-testing/

Thank you SO much. This is exactly what I need. I think you're right that I should start with the basal and work from there; I think everything is "off" if I'm honest. Do you by any chance know of a good app that help to carb count? I came to the same conclusion last night. I downloaded one today and it was so limited!

 

[Marie 2]

I use Calorie King probably the most. But I am strictly just looking up certain foods off and on. You can usually also just put carbs in a food in search and the carb count comes up. A lot of your carbs are on packages and it also becomes easy to memorize common foods you eat all the time. I believe a lot of people like the My Sugr ap. It helps with various things and I believe the basic is free. Someone else might be able to chime in with more information on aps.

 

[Juicyj]

Hi @Michele01

Couple of things - firstly do you have a diabetic nurse ? They tend to be more accessible than an endo and can be reached fairly quickly if you can get hold of an email address for one, I bounce stuff to mine on email and get a response within a day this way. You need a more direct contact than an endo to resolve your hypo issue as it's vital you avoid these where possible, call today and see if you can locate one ?

In regards to carb counting, carbs and cals is a good app to download on your phone and this course which is available online is a great resource: https://www.bertieonline.org.uk/

As you may of gathered we are all uniquely different which is why someone's correction dose will be different to yours, so never use insulin dosing advice from another t1. The foundation to good control is basal testing as it supports the basic requirements, so doing some basal fasting tests to figure things out is the first place to start.

Getting a handle on things will help for a less bumpy ride, I personally limit my carb intake to keep my BG levels more stable, I also take less quick acting insulin which reduces the margin for error too, I also exercise 3-4 times a week which helps with my glucose control. I use a Dexcom G6 which is similar to the libre and it helps me to identify patterns with my control, I can then see where basal tweaks need to be made, it is always work in progress though as hot weather improves my insulin sensitivity so things can dynamically change from time to time, keeping good resilience to cope with the never ending changes is vital.

 

[becca59]

Hi @Michele01 as others have said insulin doses are very individual and the amount others dose at particular times are not relevant to ourselves. Basal is key and when that is spot on you can sort out the bolus with help from your team. Or even on your own with experimentation. (I have personally always wanted to sort it myself. But that is just me)
What I did pick up is, that rise from 3.3 to 9.7 is a 6.6 rise. Which is about right for a 1 unit to 10 carb for a rise of 3 mmol. Which is basically what you said. Personally I would eat something much faster acting and not so much of it to get me back to a 5 as quickly as possible. For me that is 1 jelly baby. For you it could be 2 or more. The fat in those hoopla hoops would delay the rise and may keep you rising later. And to go to a 9 is too high a rebound. The process of hyper and hypo is what you are trying to break. Sit down, eat something fast acting and check after 15 minutes. Don’t be tempted to eat everything in site. It is very difficult as our brains are telling us to eat. But been disciplined with hypos by eating the correct amount for you, will bring as big a dividend as getting that basal correct. Good luck.