Help needed!

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 said:

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.

Click to expand...

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 said:

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/

Click to expand...

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!