Newbie T1

[Anne Aberdeen]

Hi I was diagnosed one year ago with T1D at the ripe old age of 65. Due to the pandemic I feel I haven’t had the support I would have been given pre pandemic. I’m still trying to work out why my blood sugars don’t do what I expect them to do. Can’t seem to be able to get them to settle between 4 and 8 as advised by hospital. Anyone else struggling with this?

 

[Inka]

Welcome @Anne Aberdeen 🙂 Diabetic control is hard work, and even when you do everything right you can still get out of range results.

What insulins are you on? Are you carb counting and adjusting your mealtime insulin accordingly? How high/low are you going? How often?

 

[Anne Aberdeen]

I use Humalog and Levemir. I carb count using Carbs & Calc app. I adjust mealtime insulin when necessary ie add 1u insulin per 2 I’m high but only if minimum 4-5 hours since last dose. I can go as Hugh as 20, not unusual for me to spike over 14. Then I can hypo later. I’m high daily and average 1 to 2 hypos a week.

 

[SB2015]

Hi @Anne Aberdeen and welcome to the forum from another late starter (53)

I also remember being sent off with all my kit and told just keep your levels between 4 and 10. That is simply not possible 100% of the time. We each manage a large number of variables every day and we will get it spot on sometimes and other days we won’t. You just do the best you can.

If you feel happy to answer @Inka ‘s questions that will help us to tailor our answers to how you manage your diabetes.

A couple of things that really helped me at the start was being given half unit pens to use. This enabled me to make smaller adjustments to my doses which was great as I was only on small amounts for each meal.

There are education courses that can help you to learn how to adjust your own doses to match the meals you are eating, which you may be doing already. There is an online course called BERTIE which takes you through the steps. In other areas a Dose Adjustment For Normal Eating (DAFNE) course is available. Do ask your Diabetes Specioaist Nurse about these.

Whatever questions you have fire away. Nothing is considered silly on here. Just ask.

 

[SB2015]

Oops. I was typing when you were.

 

[Anne Aberdeen]

I was told to eat as I normally would. I love carbs bread, potatoes, pasta, rice I love them all. I think my ratio is quite high. I take 1:4 breakfast and 1:6 or 1:7 for lunch and dinner. My blood sugars usually rise quite steeply after breakfast.

 

[Inka]

I use Humalog and Levemir. I carb count using Carbs & Calc app. I adjust mealtime insulin when necessary ie add 1u insulin per 2 I’m high but only if minimum 4-5 hours since last dose. I can go as Hugh as 20, not unusual for me to spike over 14. Then I can hypo later. I’m high daily and average 1 to 2 hypos a week.

Ok - so that looks like something’s wrong somewhere if you’re running high frequently.

Sorry for all the questions but are you taking the Levemir twice a day or once?
Have you done a basal test to make sure your Levemir is the right amount?
Are you waiting until your blood sugar comes down before eating if you’re high eg if you’re 11, correct and wait until you’re under 8 to eat?
Very importantly - are you bolusing enough in advance of your meals, particularly breakfast? I need to bolus 30 mins in advance of breakfast with Humalog. That stops any spikes.

P.S - eating normally is fine. Bread, pasta, potatoes, rice are fine.

 

[Cherrelle DUK]

Hi @Anne Aberdeen, welcome to the forum!

I just wanted to pop in and share our helpline number as it might be worth giving them a call on 0345 123 2399. You can have a chat about any concerns you may have and also get advice on managing your BS levels.

We've got lots of lovely members with great advice on the forum who've been in the same boat so do have a look around. 🙂

​

 

[trophywench]

So how many times have you rung your clinic at the hospital to discuss the problems? They ARE still at work.

My clinic rang me last Friday to tell me the CCG have now authorised the prescription of the Libre 2 - which I started with last autumn, and actually went in person to the hospital and had a face to face with the Nurse/Manager to be shown how to use it, same in January when I got my replacement pump, and my Consultant rang me this afternoon for my 6 monthly review. Though some years I've gone 12 months between needing them, at other times I've needed them quite a bit, it's just the way it happens.

They have always been and still are, 'there' for me.

 

[SB2015]

Hi Anne

As a T1 eating normally is fine. We just need to match our insulin to what you eat which your DSN can help you with. As @trophywench has said they are still there and they are there to help you making adjustments to your ratios, for your cabs and your corrections, as well as adjusting your background insulin (Levemir)

My spikes are bigger if I eat a bigger meal, which took me a while to clock!! I also find that timing my meal injections so that the insulin has got going by the time I eat the carbs helped. It is lots to learn and it takes a bit or trial and improvement to sort out what works for you.

Do get back to your team and discuss adjusting your doses.
Let us know how you get on.

 

[Anne Aberdeen]

Ok - so that looks like something’s wrong somewhere if you’re running high frequently.

Sorry for all the questions but are you taking the Levemir twice a day or once?
Have you done a basal test to make sure your Levemir is the right amount?
Are you waiting until your blood sugar comes down before eating if you’re high eg if you’re 11, correct and wait until you’re under 8 to eat?
Very importantly - are you bolusing enough in advance of your meals, particularly breakfast? I need to bolus 30 mins in advance of breakfast with Humalog. That stops any spikes.

P.S - eating normally is fine. Bread, pasta, potatoes, rice are fine.

I take levemir twice daily.
Not done basal test.
No I dont wait until I am under 8 as I was told to adjust dose.
I usually bolus 30 mins before breakfast (sometimes a bit more). With lunch and dinner usually about 10-15 mins. as advised.

 

[Inka]

A basal test would be worth doing. If your basal is wrong it makes it harder to get things right as basal is the foundation on which we build:

https://www.diabetes-support.org.uk/info/?page_id=120

Although you can just add the correction amount to your mealtime dose, if you don’t wait long enough until your blood sugar is going down then the food you eat will be putting your blood sugar even higher. At higher blood sugars, resistance to insulin increases making it harder to get blood sugar down and often meaning we need more insulin to correct than we would if at a lower blood sugar.

My advice is to try to see if your basal is correct first. Then once that’s done, look at your mealtime ratios. Sometimes it’s just easier to inject the correction/meal dose together and get on and eat, but if you can wait and get back into range first it might help the lurch from high to high.

Be cautious and check in with your team if you need to.

 

[everydayupsanddowns]

Sorry to hear your diabetes is giving you a bit of a runaround @Anne Aberdeen

Sounds like you are working hard and trying to follow the advice yoi were given, so getting such variable results must be frustrating.

Managing T1 diabetes can be a bit of a runaround at times, and sometimes it's hard to see the wood for the trees. I found keeping notes of my BG readings, along with details of what I was eating, dose timings and any other potentially significant factors (exercise, alcohol, stress, illness...) helped me begin to piece things together and spot patterns in the randomness.

I second the idea of a basal check, to ensure that your levemir doses are tailored as accurately as they can be for your insulin needs, to just keep your BG level in the background.

If you would like to you can sign-up to one of the online structured education courses in insulin management, which might help fill in some of the blanks for you

DAFNE - now available in an online version
(dose adjustment for normal eating)
https://dafne.nhs.uk

BERTIE Online carb-counting course:
www.bertieonline.org.uk

Alternatively these books are both highly recommended

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes. Don't be misled by the title - this book is relevant to people of all ages!

Think Like a Pancreas’ by Gary Scheiner - A practical guide to managing diabetes with insulin

Good luck, and keep chipping away at it - you will get there 🙂

 

[Anne Aberdeen]

Hi Anne

As a T1 eating normally is fine. We just need to match our insulin to what you eat which your DSN can help you with. As @trophywench has said they are still there and they are there to help you making adjustments to your ratios, for your cabs and your corrections, as well as adjusting your background insulin (Levemir)

My spikes are bigger if I eat a bigger meal, which took me a while to clock!! I also find that timing my meal injections so that the insulin has got going by the time I eat the carbs helped. It is lots to learn and it takes a bit or trial and improvement to sort out what works for you.

Do get back to your team and discuss adjusting your doses.
Let us know how you get on.

Last night I went to bed

A basal test would be worth doing. If your basal is wrong it makes it harder to get things right as basal is the foundation on which we build:

https://www.diabetes-support.org.uk/info/?page_id=120

Although you can just add the correction amount to your mealtime dose, if you don’t wait long enough until your blood sugar is going down then the food you eat will be putting your blood sugar even higher. At higher blood sugars, resistance to insulin increases making it harder to get blood sugar down and often meaning we need more insulin to correct than we would if at a lower blood sugar.

My advice is to try to see if your basal is correct first. Then once that’s done, look at your mealtime ratios. Sometimes it’s just easier to inject the correction/meal dose together and get on and eat, but if you can wait and get back into range first it might help the lurch from high to high.

Be cautious and check in with your team if you need to.

 

[Anne Aberdeen]

Hi thank you all for your replies. I can see I have a lot of work to do to get my readings where I want them to be. I do feel that perhaps my basal dose isn’t right and this could be causing the spikes and hypos. I will contact my support team for help. I had heard about the book Think Like a Pancreas but not from a diabetic source so didn’t know if it would be of use. I think I’ll have a look at the books suggested. Thank you so much

 

[Inka]

Think Like A Pancreas is a great book 🙂