Confusing and concerning.

[SHORAN]

Hi, what about LADA? Latent autoimmune diabetes in adults? Characterised by gradual loss of pancreas insulin production, so the symptoms come on much more slowly than Type 1.

Agwagw - yes I think youre right...
That's what I thought LADA was - onset of type one diabetes in adults ( usually over the age of 30 ) , and it comes on fairly slowly ( I think about 5 years after initial diagnosis usually as a type 2.....

Shoran

 

[SHORAN]

The main -and very serious - disadvantage of LADA not being known amongst the medical fraternity is that it is so often misdiagnosed as Type 2. What follows is years of Metformin, diet etc etc, persistent high BGs and general disbelief that you are a 'compliant' patient until they begin the insulin regime. Typical type 1 has a very rapid onset. The years of poor diagnosis and high BG can lead to eye damage, as in my case. All I can say is that you were lucky as being classed as Type 1 not type 2!

It took 7 years before they figured out I was actually a Type 1. I just hope I havent done irreparable damage in the meantime.
Bah !!

Shoran

 

[SHORAN]

Hi, I discovered years ago that carb counting ref 10g carb to 1 unit insulin just does not work.

It certainly sounds like you have LADA - as I have. I went through a very similar path to what you describe.

My main advice is that 'Novorapid' is anything but rapid for me. I could take a corrective dose but it doesn't kick in for at least six hours, if not longer. There is a much improved version of Novorapid called 'Fiasp' It is also insulin Aspart but with an additive that makes it work faster - which it does. My advice is to request a change to Fiasp, and don't take no for an answer. Also, while you still eat significant carbohydrate then it is very easy to get onto a sawtooth pattern of blood glucose - go low eat carbs, up to high, bolus jab, etc. I suggest you cut down on fast acting carbs, biscuits, cake, bread and certainly no sugar containing drinks or sweets (unless combating a hypo). I find this regime helps greatly in keeping my BGs in the target values (using Libre 2 system).

One other thing - Glargine can cause enormous hypos if it gets into a blood vessel - this happened to me once and I was almost hospitalised. I now use 'Tresiba' which can't do this - much better control with it too.

Good luck!

Fascinating information thank you.
So carb counting as in 1 unit per 10g didnt work for you so how did you manage carb counting - if at all ?
Im seeing my diabetes nurse on Wednesday to raise my concerns so I will talk to her about whet you say about Novorapid and ask about this Fiasp. My biggest "sin" is bread , though each slice is 11g of carbs and its usually Warburtons wholemeal no added sugar bread. I try to eat usually salads, broccoli, cabbage, cauli etc and meat or fish, with a smallish portion of potatoes, chips or noodles. I never eat pizza, pies or pasta these days. Brown rice I'll eat on occassion but not too much of it. Buiscuits and cakes very rarely. Cholate eclairs sometimes. Oranges I'll have, apples, strawberries, raspberries. Greenish banana. Never grapes, plums, bliueberries or dried fruits . Plenty of cheese, Full fat yougurt for breakfast. Full fat milk......I love avocado so I try to eat this 1-2 times a week... same with oily fish. If I ever eat a sweet its usually a boiled sugar free diabetes sweet I buy occassionally from a sweet shop !
I nearly alyways inject into my skinny butt... ( 4mm needle ) could it still get into a blood vessel ?, I also inject a few inches away from my belly button where its a little but flabby.......
Glargine is long acting insulin as in basal insulin ?
Tell me more about Tresiba ?...... what exactly is it ?

Thanks again,
Shoran

 

[SHORAN]

I am not convinced Fiasp is a good insulin to start on - I changed to it about 4 years ago and found its quirks meant it took some time to get used to. Especially as the speed (and dose) at which is works is very dependent upon your starting BG.
It would not surprise me if that is why NovoRapid is used as a safer starter bolus. It's much easier to focus on getting the dose right and coming back to baseline after 4 or 5 hours even if can be rather (Novo)Sluggish.

Or learn how to dose for all carbs and not restrict your diet.
I tried going low carb., It did not suit my lifestyle (frequent travelling and eating out for work) and very low carb was an absolute pest because I had to work out how to bolus for protein which, for me, was a different timing and insulin to protein ratio for every type of protein.
I can see some benefits of lower carb but whilst working out insulin to carb ratio, the usual advice is to eat "normally" so you do not need to worry about insulin to protein or the insulin resistance which low carb seems to bring to some people with Type 1.

I agree Lantus can be concerning, It was the new kid on the block when I started but I see Tresiba and Levemir have taken over.
Tresiba seems to be a bit if a marmite for basal dosage. It's long stable profile is loved by those who have a steady need for background insulin over 3 or 4 days but if your needs vary day to day or night to day, it can be challenging.

Thanks - In Response

So "Tresiba" last as long as 3-4 days ? - thats a incredible !

I could attempt to eat anything and just dose for all my carbs, it's very tempting but soon I'd end up eating Pizza ... cakes etc . Im sure to put on weight unless I excercise lots ! I'm reasonably active but I know I need to ramp up the excercise a lot more.
So for ther moment at least - I tend to try and play it "safe" and stick to a reasobnably sensible T2 style of diet or proteins, veg, fats as in yogurt, avocado , nuts ... cheese etc

Intresteing what you say about Fiasp. I'll mention this insulin to my nurse.
What I cannot understand is my consultant says I am slim so unlikely to be "insulin resistant "so I should stop METFORMIN and now to be reliant totally on just basal and fast acting insulin ( but presently until I get the hang of the correct amounts , my levels are going very high at the moment ( 18 plus etc ) I'm still tweaking and slowly increasing my basal as per my consultants recommendation> The thing is before i was advised to stop taking my METFORMIN aand EMPAGLIFLOZIN .... my levels were lower and more stable !!....

I find when I've injected the "correct amount" of insulin based on my carbs with any pre meal corrections added... it's doing nothing to get my levels correct ! Then later - I'm finding that when I attempt to correct my levels with a few units of Novorapid a 2-3 hours after my meal it seems to make no difference and my levels continue to climb !
Insane.
Maybe if I increase my basal insulin amount it will start to make a difference. I'll see what happens over the next few days.

 

[CheeseSeaker]

I find when I've injected the "correct amount" of insulin based on my carbs with any pre meal corrections added... it's doing nothing to get my levels correct ! Then later - I'm finding that when I attempt to correct my levels with a few units of Novorapid a 2-3 hours after my meal it seems to make no difference and my levels continue to climb !
Insane.
Maybe if I increase my basal insulin amount it will start to make a difference. I'll see what happens over the next few days.

Novorapid and me are old friends - used it for 20+ years

Its a bit mis-named as a 'fast acting insulin' - (each of us are different) but I found it did very little for at least the first half hour, and didn't really kick in till 1 hour past injection - usually needed to pre-inject for meals to get it working before the food hit my system. Active for about 4 hours (when I used syringes or MDI as its known)

I switched to Fiasp (Novorapid with 'stuff in' to make it work quicker) - that kicked in pretty much immediately (so inject when the food is on the plate). Lots of people have success, some don't - I got insulin resistance so switched to Lyumjev (humalog with 'stuff in') which works better for me.

I run everything from a pump (over 13 years now) which is set-up to be an artificial pancreas (I don't need to tell it when I eat - it just copes with it) - a DIY system from some great people on t'internet and very complicated, but it shows whats coming in the near (5 years or so) future for everyone.

Once you get your MDI Insulin set-up, there are options to make life easier (pump or hybrid loop), you just need to get through the hurdles of getting a regime that works for you - all possible, it just takes small steps to get it right. Does sound like your Carb Ratio (10g to 1unit) might need upping a bit, and pre-bolusing might help, but thats where a Diabetic Nurse can advise you what to try (crashing lows are no fun)

 

[SHORAN]

Novorapid and me are old friends - used it for 20+ years

Its a bit mis-named as a 'fast acting insulin' - (each of us are different) but I found it did very little for at least the first half hour, and didn't really kick in till 1 hour past injection - usually needed to pre-inject for meals to get it working before the food hit my system. Active for about 4 hours (when I used syringes or MDI as its known)

I switched to Fiasp (Novorapid with 'stuff in' to make it work quicker) - that kicked in pretty much immediately (so inject when the food is on the plate). Lots of people have success, some don't - I got insulin resistance so switched to Lyumjev (humalog with 'stuff in') which works better for me.

I run everything from a pump (over 13 years now) which is set-up to be an artificial pancreas (I don't need to tell it when I eat - it just copes with it) - a DIY system from some great people on t'internet and very complicated, but it shows whats coming in the near (5 years or so) future for everyone.

Once you get your MDI Insulin set-up, there are options to make life easier (pump or hybrid loop), you just need to get through the hurdles of getting a regime that works for you - all possible, it just takes small steps to get it right. Does sound like your Carb Ratio (10g to 1unit) might need upping a bit, and pre-bolusing might help, but thats where a Diabetic Nurse can advise you what to try (crashing lows are no fun)

Great thanks for that. All information is useful. A learning curve for me !

Shoran

 

[SHORAN]

*** UPDATE***

I saw my my diabetic specialist nurse yesterday.
She seems to think its about getting the basal insulin amounts spot on first - this will then get the fast acting insulin working as it should ...

She is convinced at the moment that I should carry on with my Novorapid and carb count as 10G carbs = 1 unit. ( if nec carb count ratio to be altered to 8g carbs = 1 unit )

She is however switching my basal insulin Abasgalar to Levemir.
Wants me to try 12 units in am and 10 at night.

I've to see how get on with this over the next 3 days and "corrections " from now on are instead of a reduction of 4 mmol/L =I unit, to start doing it as a reduction 3mmol/L = 1 unit ....

If my levels are still too high.
On the 4th morning I've to check if my fasting levels are 10 or more, I'm then to to have a carb free lunch - and check if my levels are dropping by dinner time ( evening meal ) if it hasn't - then my basal insulin amount will need to be increased.

It's a learning curve, a tweak here n there......

Shoran.

 

[jaywak]

You may find as I have that the higher your bg the more insulin resistant you become , if you're up in the teens when you inject it sometimes seems that the insulin is doing nothing but if you're in the normal range it does its job perfectly .

 

[SHORAN]

You may find as I have that the higher your bg the more insulin resistant you become , if you're up in the teens when you inject it sometimes seems that the insulin is doing nothing but if you're in the normal range it does its job perfectly .

Thats interesting to know. Thank you.

 

[CheeseSeaker]

Good advice from @jaywak - I tent to find I need more insulin (about 1/3 as much again) when I get past 10-12mmol) to do the same thing.

The test is (when in normal range between about 6 and 10mmol) - eat 10g of carbs (a known 10g snack), inject your bolus amount for 10g (1u in your case) and in 2-3 hours your should have returned to your starting BG.

As you've been advised though - work on your basal first, then start looking at the bolus ratio once you've completed your 'fasting' days monitoring.

When you have that 'sorted' you can then look at getting the Insulin / Carb (I/C ratio) bit right

 

[SHORAN]

I haven't quite got the basal amounts right as I'm still running high. Interesting what you say about if one is in the "teens" a correction no of units to inject seems to make no difference - this is me.

Seeing the Diabetes nurse this pm - so I"ll see what she says....

 

[SHORAN]

UPDATE.

I've been told to try my carb ratio nos 8g = 1 unit of Novorapid ( not 10g as before ) and correction dose ( pre and two hours post meal ) 1 unit to bring down 3 mmol/L

Increase my basal unit ( Levemir) at night from 12 now to 14 units, in the morning now to be 12 units instead of 10.

It's a learning curve... but I think Im getting there.

 

[SHORAN]

LATEST UPDATE. For anyone who's remotely interested !

Now I'm to carb count as thus : ( Novorapid insulin / bolus )

In the daytime; pre dinner 7g carbs = 1 unit.
Dinner time and beyond 6g Carbs= 1 unit . ( apparently I go all high in the eves hence this new tweak )

Post and pre meal corrections : 1 unit of Novorapid for each 2mmol/ L that I wish to reduce my glucose levels by.

Basal Insulin ( Levemir ) , 14 units at bed time, 18 units in the morning when I wake up.

I have been told to go Back on METFORMIN ! but instead of the 2000mg daily, I take 1000.
1 x 500mg in am , and another 500mg in the eves.


Maybe some of you will have some ideas ?

Why do you think the diabetic nurse swiched me from Levemire basal insulin from Abasgalar ? ( she never did explain that )

Also why did she suggest I need to do twice daily basal insulin ? my brother and father both only do it once at night and overall take about half the amount I do. ( Each take maybe as much as 20 units ) Father is a T2 ( but possibly a T1.5 ) brother is a T1.

Why am I taking a lot of basal insulin ?

I'm a recently diagnosed T1( or to be exact a T1.5 ? ) after 7 years of being an incorrectly diagnosed "T2 "


Questions and questions !!.....

Thanks, Shoran .