Feeling lost, clueless and tired

[Sammi87]

since my new diagnosis of LADA on the 1st of may this year I haven't reLly been given much advice on what the hell it is I'm actually meant to be doing? My BG is still high in the 20s but at times has fallen below 10 which I haven't experienced in a very long time. But i really don't understand how, when and how much I'm meant to be injecting. I was given a basic of breakfast 10 lunch 12 supper 14 for the Novorapid and 20 bedtime for the Lantus. I have been tweeking these slightly when my BG is high but I don't know how much I should be tweaking as I'm worried I'll give myself a Hypo. I have downloaded the cals and carbs app but again if I am already high how do I account for this as well as the suggested amount to cover meals? I have been put ion the list for the DAFNE course but again I'm having to await that. I'm not a big eater through the day as I work 12 hour shifts but obviously by the evening I'm very high and then end up stuffing my face. Same on my days off I just don't feel hungry, trying to make myself eat regularly but it isn't difficult, being my waking blood sugar was 19 I have taken my insulin anyway to bring it down. Am I doing the right thing?

 

[Ljc]

Hi @Sammi87. Sorry I don’t know much about LADA. It sounds to me that they haven’t got you ratios right yet , I’m T2 and my experience with going on insulin was that , initially it’s a best guess about the ratio needed and much tweaking is needed .
I think you should contact your DSN /team ASAP for advise, they do need to know what is happening , how you are getting on and should be there to support you, I assume you are under a hospital team rather than th GP nurse ?
Others with far more experience than me will be along soon.

Once you know how to adjust your insulin’s it will get easier.

 

[Sammi87]

I've been on insulin since June last year, they have recently changed the type of insulin I am taking. I am under the hospital now. I have a DSN appointment next week, not really sure what I need to take for that or what I should be doing in preparation for it it's my first appointment with them since initial diagnosis. Thank you for responding.

 

[Ljc]

They have left it a long time to see you again haven’t they.
If you have their number / email you could contact them to see what you need to take or do.
My advise is pen and paper to take notes , a bag to put leaflets etc in and your repeat prescription list.

 

[Lisa66]

Hi Sammi

Well no doubt the highs are making you feel tired...and shift work too I imagine. There's always a certain amount of tweaking to be done when you start any new insulin regime, but as frustrating as it is now, you will get there.

I think you need to speak to your team with regard to any tweaking advice. Can you ring and speak to your DSN before next week? They won't want you to be struggling on your own. You'll also have a chance to make any changes and see what happens before next week, when you'll have a good opportunity to discuss changes made. With regard to your appointment, take a list of questions (no matter how long it is) and a record of everything you're doing. This gives them information to help you.

 

[Sammi87]

Thank you both for your advice, my appointment is on Tuesday I don't have a direct number for them just my appointment letter. I will take my notebook with my and I'm guessing they will want a food diary and BG levels so I'll take this as well. My previous insulin was humalog mix 25 which I was on set doses 24 and 27 am and pm so I didn't have to work anything out but obviously that along with the metformin and stigliptin were acheiveing nothing but at the time they were treating what they believed to be T2.

 

[Lisa66]

Oh that's annoying. Any admin numbers that might be able get you a number? Yes, that all sounds good, take as much info as you have. Ask them to explain to you how to tweak your doses and don't leave without a contact number🙂, must just be an oversight that they haven't already given one to you. Is there anyone you can take with you....two pairs of ears etc? Don't worry about asking anything you may think is trivial or obvious, they'll have heard all the questions before and don't forget they're there to help you!🙂

 

[Ljc]

Not long to wait now then. Do ask for the DSNs contact details

I’m wondering if the DSN can help you adjust your insulin for carbs eaten , correction doses and insulin stacking. Don’t worry it’s nowhere near as difficult as it sounds
I’m also thinking you may find the BERTIE online course helpful.
It’s meant for T1 but I found it very helpful
https://www.bertieonline.org.uk/

 

[Sammi87]

I was told for every 3 over my ideal BG it's 1 unit of insulin but obviously I'm having to go above that. For example my BG was 22 which would be say 7 units but is that 7 as well as the stated 10 for breakfast plus whatever I need to cover what I've eaten? It's all very confusing. Sadly I'm attending this appointment on my own as my mum is working and my partner works nights. I may see if he can attend with me as I would like him to understand it better too so he can help me when he preps meals of for instance if I have a hypo etc but obviously it's difficult to get time off at the moment as kids are on half term and many people are already off.

 

[Sammi87]

Not long to wait now then. Do ask for the DSNs contact details

I’m thinking the DSN should be able to help you adjust your insulin for carbs eaten , correction doses and insulin stacking. Don’t worry it’s nowhere near as difficult as it sounds
I’m also thinking you may find the BERTIE online course helpful
Back in a mo with a link.

That's what I'm hoping I think once I actually understand what I'm doing I should be able to control things but at the moment it's a stab in the dark haha thank you I would appreciate that very much I'm open to any form of help I can get.

 

[Ljc]

Here it is
https://www.bertieonline.org.uk/

 

[everydayupsanddowns]

I was told for every 3 over my ideal BG it's 1 unit of insulin but obviously I'm having to go above that. For example my BG was 22 which would be say 7 units but is that 7 as well as the stated 10 for breakfast plus whatever I need to cover what I've eaten?

I think you need to ask for a much clearer system Sammi.

What is the 10 you mention? My guess is that those were suggested fixed doses for different meals?

Unless I have completely mis-understood, if you are carb counting your meals (as in "whatever I need to cover what I've eaten") then that would be instead of the fixed doses that were suggested to you before (10 at breakfast, 12 at lunch, 14 at eve meal) not as well as insulin you are calculating based on the carb content of those meals.

But I'm not sure I've understood you right, so you are best off asking the DSN at the appointment. Either way around, if you are regularly in the 20s something is really not right with your doses/ratios.

 

[Sammi87]

I think you need to ask for a much clearer system Sammi.

What is the 10 you mention? My guess is that those were suggested fixed doses for different meals?

Unless I have completely mis-understood, if you are carb counting your meals (as in "whatever I need to cover what I've eaten") then that would be instead of the fixed doses that were suggested to you before (10 at breakfast, x at lunch, y at eve meal) not as well as that insulin.

But I'm not sure I've understood you right, so you are best off asking the DSN at the appointment. Either way around, if you are regularly in the 20s something is really not right with your doses/ratios.

Yeah the ten is the suggested fix dose fro breakfast but obviously it's always more then that. Yes I've been advised to carb count using an app you have definitely understood and interpreted my ramblings well lol yeh I have so many questions for her I may write them down so I don't forget. My Bgs have been high for such a long time now I'm not going to know what to do with myself when they are within normal range

 

[Sammi87]

Here it is
https://www.bertieonline.org.uk/

Thank you so much

 

[trophywench]

I think this is something you should also seriously consider - testing to see how your basal insulin (Lantus) dose is serving you. Have a read of this article and explanation of how to do it.

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

It sounds very much - to me - as if your dose of Lantus isn't enough at the moment, but until you test it in real life you'll never know.

At this rate you'll be ahead of what the DSN is expecting - and she'll be pleased!

 

[Sammi87]

I think this is something you should also seriously consider - testing to see how your basal insulin (Lantus) dose is serving you. Have a read of this article and explanation of how to do it.

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

It sounds very much - to me - as if your dose of Lantus isn't enough at the moment, but until you test it in real life you'll never know.

At this rate you'll be ahead of what the DSN is expecting - and she'll be pleased!

Thank you so much for your help, this forum really has been such a saviour to me.

 

[Maz2]

I am sorry to hear you are still having problems Sammi. I am afraid I am no help as I know nothing at all about LADA.