LADA - When did things start to change for you?

[Purrpleness]

Hi guys,
I was diagnosed with LADA (type 1) this time last year. I was put on Lantus from the off, i take 6 units every morning. Also, every morning i have 2 coffees, each with 3 sweeteners (before diagnosis i would have 2 sugars per cup, i drink a lot of coffee). My levels from the 2 coffees would raise me to about 10.4 then drop back into range pretty quickly, no issue. Fast forward a year, my 2 coffees spiked me to 19.5mmol and thats after i cleaned the bathroom, changed the beds and hoovered the floors, getting a sweat on.
Previously my Lantus was keeping me in range through the night and i would be in range till i consumed anything, now i am waking up between 13-14mmol. I saw my endo in January and she was happy my Lantus was keeping steady through the night, so no adjustment. I had my HBa1c in feb, it came back as 63, my Libre is now showing estimated 68.
I also saw a Dietician last month and i find cause i am LADA, i guess everyone thinks it's going to be ages before any dramatic changes are needed as we did catch it very early and accidentally (i knew something was off and type 1 runs in my family). The dietician gave me a ratio of 1unit - 30carbs and we will only treat it at breakfast/lunch as thats where the spikes are showing, i just want to say, it does not work!! that ratio doesn't touch it, i just took 3units for a bacon sandwich and i'm currently sitting at 19.5mmol and i had that 2hrs ago now.
I guess what i am trying to find out is, how long after a diagnosis like mine did you see a change? I get the impression from reading many of the advice online that i probably could get away with years and years of not even having to touch bolous *shrugs*
Guess i am a little frustrated and would love to hear some of your experiences and stuff.
Thank you for listening to me go on.
Sarah

 

[rebrascora]

Hi and welcome.

The time scale can vary quite significantly from one person to another and it sounds like things have definitely changed for you and your doses need to be increased because you do not want to continue with levels in the teens or above for much longer than a few weeks. Do you feel confident to do some experimenting with doses yourself? If so, only change one thing at a time and work on basal insulin first. It is best to make a small change and then leave it 3 days before you decide whether you need to make another change.... unless the change is causing you to hypo, in which case you would take action straight away. With your basal, you are looking to find a dose which keeps your levels fairly stable overnight, so if you go to bed on about 10 then you would want to wake up somewhere between 8.5 and 11.5. Ultimately you would want to get to the stage where you are going to bed on a stable reading of 6 or 7 and waking up in target but it is safer to start from a higher level and work downwards when you become more experienced. Once you have your basal holding you steady, then you can start to look at bolus ratios, but getting your basal dose as close to keeping you level first is key.

Having an illness or virus which of course stimulates the immune system, can bring about a change and I found my first Covid vaccine had an impact and I needed to up my basal insulin to nearly double in the couple of months following that and they have been pretty steady since then which is nearly 4 years ago so I am pretty sure my honeymoon period is over and my beta cells have pretty much all bit the dust now. In some respects for me that makes it easier because what I inject is all that impacts my levels rather than my body tossing in a bit here and there to make a mess of my calculations! 🙄

Do you have Libre or other CGM (Constant Glucose Monitor) so that you can see what your levels are doing overnight? That makes sorting your basal dose much easier as long as you understand the limitations of Libre or other CGM, so things like lying on the arm with the sensor on it can give a false low reading. If you don't have a CGM yet, you can apply to Abbott for a free 14 day trial, essentially one sensor, which you will need a smart phone to read. We can talk you through all that later if you need help with it, but as a LADA on insulin you are entitled to a CGM on prescription so if you don't have them yet, then ask, but get the free trial to be going on with.... if you haven't already tried it.

 

[trophywench]

I never had LADA though I think @SB2015 did - but for what it's worth I think the first thing most actual newly diagnosed with straightforward Type 1 are advised to start off with for mealtimes is 1u per 10g carbs - so if it was 2 full slices of normal white sliced, that's at least 30g carb if not more. (refer to label) Also that 1u of fast acting insulin usually reduces BG by roughly 2.5 or 3.0 - the same amount that eating 10g carb increases the meter reading by. However - that IS assuming the BG before starting to eat is between 4 and 7. (ish)

Thing to do is carry out controlled experiments on yourself. Get your BG to 5-ish, eat more or less exactly 10g very plain carb having jabbed 1u fast acting. What happens in the next few hours?

 

[Purrpleness]

Thank you for your reply, I have been on the Libre 2 now pretty much since diagnosis, this is how i am seeing the spikes and changes, i now wake up with my alarm going off rather than not hearing anything till after my first coffee, i do check with finger prick now and again, so i know its pretty accurate. My time in range over 7 days 14% and 22% in 14 days, 90 days 45%, so there has been a massive change. I haven't changed my diet other than less sugar.
The dietician and endo both agreed about not bolousing for my evening meal as i cycle to work in the evenings and work cleaning operating theatres, so its pretty full on and by the time ive got to work i drop in range, although recently i am lingering higher in the teens at that time now.
I am happy to maybe add 1 or 2 units extra on my Lantus, i was going to email the diabetic team tomorrow for some advice yet i'm not not so sure what i am hoping to get out of it, if that makes any sense?
i'm still not 100% confident in taking fast acting insulin, i think its taking enough for said carbs and maybe not finishing the meal and then having a hypo. i understand its trial and error, each person is different. Also, i have in my head that i count the carbs of say bread but not what else i am eating with the bread, so my head just cannot compute what i am actually doing, i even bought the carb counter book, am set up on the diabetic-m app and yet i can't get my head around the whole thing. What if i bolus for a sandwich then fancied a packet of crisps straight after that i didnt bolus for? do i wait out the 4hrs before correction? how much do i correct? - can you see where i am coming from? obviously i am not asking all these questions to everyone here, thats just where my heads at lol
Sorry for going on, i think i need to draft an email asking all the above and send to my endo, the diabetic team are pretty good at getting back to me 🙂

 

[Tdm]

I was diagnosed in my 50s, couple of years ago, and started on bolus/basal from as soon as i got confirmation from tests.
Dunno about the general impression of people going years without bolus insulin...thats not my experience, nor something i get from this forum, nor was it the experience of those on my daphne course.
It seems to me that a daphne course or something similar would be good for you. Have you read 'think like a pancreas'? It really helped me take control, and, with the best will in the world, relying of the medical proffessionals for everyday dosing decisions will really slow things down. Plus, they're not going to have the list of things you have already tried and didn't work, etc etc
Do you have some libre charts you can post here? That would help us advise

 

[Purrpleness]

I was diagnosed in my 50s, couple of years ago, and started on bolus/basal from as soon as i got confirmation from tests.
Dunno about the general impression of people going years without bolus insulin...thats not my experience, nor something i get from this forum, nor was it the experience of those on my daphne course.
It seems to me that a daphne course or something similar would be good for you. Have you read 'think like a pancreas'? It really helped me take control, and, with the best will in the world, relying of the medical proffessionals for everyday dosing decisions will really slow things down. Plus, they're not going to have the list of things you have already tried and didn't work, etc etc
Do you have some libre charts you can post here? That would help us advise

I just took a few screenshots of random days and today, as you can see i do go into range but never for very long, i was 6.6mmol the other day and my god did i feel great. i usually feel really anxious when its high, so i can kind of tell before i even check my levels. i also drop by .5mmol then 5 minutes later its jumped up again even when i havent eaten of drank anything, its like a yoyo sometimes. - I was offered the dafne course but unfortunately my anxiety prevents me from group activities, so i went down the dietician route for now and as informative and very good at what she does, i don't think i took away much from it than the Diabetic-M app, of which i never see anybody mention. Does anybody else have that app?

 

[DaveB]

When I was diagnosed at age 50 with T2 (wrongly) and then moved to insulin after a few years as I was actually LADA my DN started me on Basal but within a month she added Bolus insulin as it was obvious I needed both insulins. Don't put up with just Basal if you find control difficult over the coming months. We all vary enormously on the timescale to needing full Basal/Bolus and my insulin needs continue to increase even after 7 years or so of insulin and at least 25 years since diagnosis.

 

[Inka]

You’re very young to be LADA and it sounds like you could have done with the bolus insulin a while ago. You’re on a relatively small dose of Lantus - have you done a basal test to see if you need more (I suspect you might)?

Once you’ve got your Lantus right, you can then look at your mealtime ratios, but don’t do that until your Lantus is closer to what you need. You might also want to ask for a twice daily basal insulin like Levemir or one of the isophanes. The beauty of those is your two doses can vary, so you can, for example, have less at night and more in the morning. That gives more flexibility and better control.

Sort your basal first, but you don’t need to go to DAFNE. Carb counting isn’t hard and there are online courses:

Bertie Diabetes

.

 

[Lucyr]

What if i bolus for a sandwich then fancied a packet of crisps straight after that i didnt bolus for? do i wait out the 4hrs before correction? how much do i correct?

I’d bolus for the crisps seperately, as I was about to eat them

 

[Purrpleness]

I’d bolus for the crisps seperately, as I was about to eat them

my dietician said not to as its very small carbs, i think this is why i am so confused what's the right approach. Also, carbs is one thing, what about sugar? if i bolus for say a sandwich and crisps then had a little chocolate (I'm old school, savory then sweet) i don't tend to eat a lot of chocolate but for example.

Lucyr i came across a lot of your replies on various posts whilst having a look through posts today, have you managed to get a diagnosis in the end as i saw you hadn't had a solid diagnosis, hope you are doing ok? although i see you are very informative, which i am appreciative for 🙂

 

[Inka]

A normal size packet of crisps is around 13g carbs @Purrpleness Doyou have a half unit pen for your bolus insulin? As for chocolate, it depends how much you’re going to eat and what you’re doing afterwards.

 

[Purrpleness]

You’re very young to be LADA and it sounds like you could have done with the bolus insulin a while ago. You’re on a relatively small dose of Lantus - have you done a basal test to see if you need more (I suspect you might)?

Once you’ve got your Lantus right, you can then look at your mealtime ratios, but don’t do that until your Lantus is closer to what you need. You might also want to ask for a twice daily basal insulin like Levemir or one of the isophanes. The beauty of those is your two doses can vary, so you can, for example, have less at night and more in the morning. That gives more flexibility and better control.

Sort your basal first, but you don’t need to go to DAFNE. Carb counting isn’t hard and there are online courses:

Bertie Diabetes

.

Thank you that sounds very helpful, i am really not young, i am closer to 40 now than 30, so im pretty dated lol
i googled how do they know how much basal one should take and i got the answer it goes on weight of the individual, since starting lantus i can tell you i have certainly put on weight, so maybe i am due an adjustment.
I also wondered if the fact i take mine in the morning is less affective then if i was to take it at night? but then when i first started, the first 6 months or more were obviously working for me as i was always waking up in range.
I am a grazer, never ate breakfast, would hypo daily (way before diagnosis) now, im eating which feels like all the time and no longer getting hypos.
i have not done a basal test but i will certainly look into it 🙂

 

[Inka]

The weight thing is just an estimate. Your needs might vary. A basal test is a bit of a pain but in your situation it would be very helpful.

Yes, now you have bolus insulin, it might be better taking the Lantus at night but this is something you’d have to talk to your nurse/doctor about.

 

[Lucyr]

my dietician said not to as its very small carbs, i think this is why i am so confused what's the right approach. Also, carbs is one thing, what about sugar? if i bolus for say a sandwich and crisps then had a little chocolate (I'm old school, savory then sweet) i don't tend to eat a lot of chocolate but for example.

Lucyr i came across a lot of your replies on various posts whilst having a look through posts today, have you managed to get a diagnosis in the end as i saw you hadn't had a solid diagnosis, hope you are doing ok? although i see you are very informative, which i am appreciative for 🙂

I don’t have a diagnosis no, we’ve left it as undefined. Crisps tend to be about 15g carb so I’d bolus, I bolus for anything that would come to 1u or more.

 

[Lucyr]

if i bolus for say a sandwich and crisps then had a little chocolate (I'm old school, savory then sweet) i don't tend to eat a lot of chocolate but for example.

Id use the same rule, if it’s low enough carbs to be under 1u then I wouldn’t bother but enough to be 1u or more then I would.

 

[SB2015]

my dietician said not to as its very small carbs, i think this is why i am so confused what's the right approach. Also, carbs is one thing, what about sugar? if i bolus for say a sandwich and crisps then had a little chocolate (I'm old school, savory then sweet) i don't tend to eat a lot of chocolate but for example.

Lucyr i came across a lot of your replies on various posts whilst having a look through posts today, have you managed to get a diagnosis in the end as i saw you hadn't had a solid diagnosis, hope you are doing ok? although i see you are very informative, which i am appreciative for 🙂

Hi @Purrpleness
Sorry I am so late this thread, but you have already had loads of useful advice.I always go back to ‘you need what you need’ with regards to insulin. So if your doses are not working they need to change.

I am 16 years in, but I was far down the line at diagnosis and in DKA so had been undiagnosed for a while before going into crisis, with a lot of stress at work, so needing more insulin and just not making any. I started straight onto Basal/Bolus and have changed my ratios at fairly regular intervals over the years.

I saw a dietician for the first time in 16 years this year. She was still saying ‘don’t count the carbs in veg’ and ‘No need to have insulin for small snacks’. That was possibly good advice when we only had blood glucose test kits. With sensors, like your Libre, we now have so much more information and can head off highs and lows more easily so it makes more sense to add in insulin that is needed to balance the carbs we eat.

I will dose for any carbs that I eat and even add in for a chocolate at the end of a meal (usually at least 5g). I count the carbs for any veg I eat. A half unit pen is certainly very helpful for the smaller snacks. I was amazed when you said that they changed to 1 unit for 30g of carbs. A common starting point is often 1 unit to 10g of carbs as @trophywench mentioned. From there it is usual to increase and decrease as necessary.

Have your team encouraged you to test and change your doses yourself? This is something that we need to be able to do. As others have said it is important to get the basal doses right first. With the levels you are mentioning it would be useful to change doses.

Let us know how you get on.