Hello from the wet North

[Rae]

Hi there

Hi there. My name's Rae, I'm from Lancashire and I was diagnosed as T2 diabetic in April 2017 after going from a hba1c of 42 to 82 in under 9 months.

This April (2022), I ended up in hospital with a DKA and they now think it is LADA (still getting tested).

I'm looking to connect with some peers with similar experiences that I can learn from.

Read more: More info under the cut

So I have been taken off all T2 meds (empagliflozin, sitagliptin, dulaglutide) and moved to Triceba and NovoRapid insulin. I'm carb counting and self dosing already, but still running pretty high.

Currently basal 30u, bolus at ratio 3.5g:1u, correction factor 1.5. Ave premeal sugars 13.4 over 30 days. My worst readings are morning, and I seem to have dawn phenomenon that raises my BS 3-5mmol per night. I'm trying treating this with a correction bolus of 5u at night which seems to help but only in keeping it stable.

Carbwise, I'm eating about 120-150g per day across 3 meals, using a food diary and weighing unpackaged food.

I am obese so recognise insulin resistance is a factor in my ratio. Also have fatty liver and suspect that is involved with the sugar dumps I'm getting overnight.

Honestly, I know where I need to be but am struggling to get there. I'm already taking twice what most websites are saying is 'normal', and I'm nervous about going any higher than the 30:60 insulin load I'm running at, which is roughly 1unit per kg for me.

I'd really appreciate some perspectives. Would love to get to specialist with single figures.

Thanks all,

Rae

 

[Leadinglights]

Hi there

Hi there. My name's Rae, I'm from Lancashire and I was diagnosed as T2 diabetic in April 2017 after going from a hba1c of 42 to 82 in under 9 months.

This April (2022), I ended up in hospital with a DKA and they now think it is LADA (still getting tested).

I'm looking to connect with some peers with similar experiences that I can learn from.

Read more: More info under the cut

So I have been taken off all T2 meds (empagliflozin, sitagliptin, dulaglutide) and moved to Triceba and NovoRapid insulin. I'm carb counting and self dosing already, but still running pretty high.

Currently basal 30u, bolus at ratio 3.5g:1u, correction factor 1.5. Ave premeal sugars 13.4 over 30 days. My worst readings are morning, and I seem to have dawn phenomenon that raises my BS 3-5mmol per night. I'm trying treating this with a correction bolus of 5u at night which seems to help but only in keeping it stable.

Carbwise, I'm eating about 120-150g per day across 3 meals, using a food diary and weighing unpackaged food.

I am obese so recognise insulin resistance is a factor in my ratio. Also have fatty liver and suspect that is involved with the sugar dumps I'm getting overnight.

Honestly, I know where I need to be but am struggling to get there. I'm already taking twice what most websites are saying is 'normal', and I'm nervous about going any higher than the 30:60 insulin load I'm running at, which is roughly 1unit per kg for me.

I'd really appreciate some perspectives. Would love to get to specialist with single figures.

Thanks all,

Rae

Hi and welcome from an ex Lancastrian.
There are quite a lot of people here who are diagnosed LADA so will be on similar insulin regime to yourself and I'm sure they will be along to offer some words of wisdom.
Although I have heard people say when it comes to insulin 'you need what you need ' and everybody's needs will be different so you shouldn't compare yourself to others.

 

[everydayupsanddowns]

Welcome to the forum @Rae

Sounds like you are working really hard with your insulin management, and carb intake.

If forum folks aren’t familiar, you can click the ‘spoiler’ button to reveal details of Rae’s treatment.

If your weight is having an impact on your insulin resistance, there might be an argument for adding Metformin into the mix, which can help to make you more sensitive to your insulin doses.

Overall though. I agree with @Leadinglights - you need what you need. And getting the balance working between carb intake and doses is a very individual thing.

 

[Rae]

Welcome to the forum @Rae

Sounds like you are working really hard with your insulin management, and carb intake.

If forum folks aren’t familiar, you can click the ‘spoiler’ button to reveal details of Rae’s treatment.

If your weight is having an impact on your insulin resistance, there might be an argument for adding Metformin into the mix, which can help to make you more sensitive to your insulin doses.

Overall though. I agree with @Leadinglights - you need what you need. And getting the balance working between carb intake and doses is a very individual thing.

Thanks @everydayupsanddowns, lovely to 'meet' you. I have tried both long and short acting metformin and unfortunately can't tolerate it as it exacerbated a different condition.

I really want to try and get this in hand because I've been trying to get my gp to reassess my treatment for the last couple of years, as nothing was working (except a spell on keto which made my hba1c 62 but my cholesterol 13!) and I knew the onset was not typical of t2. It's a shame it took 5 days in hospital to get the wheels rolling, but now they are I want to make the best of it.

All the best, Rae

 

[Rae]

Hi and welcome from an ex Lancastrian.
There are quite a lot of people here who are diagnosed LADA so will be on similar insulin regime to yourself and I'm sure they will be along to offer some words of wisdom.
Although I have heard people say when it comes to insulin 'you need what you need ' and everybody's needs will be different so you shouldn't compare yourself to others.

Hi @Leadinglights, thank you for the welcome. I think that's the biggest thing for me is I've only heard from things like the BERTIE training and posts on the main website, what the average looks like. I've always been a bit weird so it shouldn't surprise me that this is too!

 

[rebrascora]

Hi and welcome.

Firstly, it sounds like you have grasped the principles of insulin usage and carb counting incredibly well if you were just started on insulin in April this year. You are still very much in the early days (first couple of months) so cut yourself a bit of slack.... Our motto here on the forum is that "Diabetes is a marathon not a sprint" We are all in it for the long haul and there is a lot of learning to do, not just about diabetes in general but your particular and unique diabetes ie., how your individual body responds to your lifestyle and your food choices and your stress levels and a whole host of other factors. It sounds like you are not shy about experimenting with using your insulins in different ways to ty to tackle issues that you have identified and that is great as long as you always keep one eye firmly on your safety. One of the things I would be concerned about is taking a largish (to me) 5 unit correction before bed to deal with Dawn Phenomenon..... Depending upon when you go to bed, most of the NovoRapid's activity will be spent by the time DP starts to kick in so in theory it could drop your levels too low during the first half of the night, although if your levels are running persistently high then this is less likely, but a basal increase to deal with the background higher levels might be more appropriate than using a correction dose of NR before bed.

As others have, you need whatever insulin you need and there is a huge range of what is normal. This forum is a great place for understanding that and learning to listen to your own body and interpret the results that you get from the different little experiments you try to figure out what is right for you.

A brisk daily walk is a great way of lowering basal needs and losing weight if you are worried about those and able to incorporate that into your day.

 

[Rae]

Hi and welcome.

Firstly, it sounds like you have grasped the principles of insulin usage and carb counting incredibly well if you were just started on insulin in April this year. You are still very much in the early days (first couple of months) so cut yourself a bit of slack.... Our motto here on the forum is that "Diabetes is a marathon not a sprint" We are all in it for the long haul and there is a lot of learning to do, not just about diabetes in general but your particular and unique diabetes ie., how your individual body responds to your lifestyle and your food choices and your stress levels and a whole host of other factors. It sounds like you are not shy about experimenting with using your insulins in different ways to ty to tackle issues that you have identified and that is great as long as you always keep one eye firmly on your safety. One of the things I would be concerned about is taking a largish (to me) 5 unit correction before bed to deal with Dawn Phenomenon..... Depending upon when you go to bed, most of the NovoRapid's activity will be spent by the time DP starts to kick in so in theory it could drop your levels too low during the first half of the night, although if your levels are running persistently high then this is less likely, but a basal increase to deal with the background higher levels might be more appropriate than using a correction dose of NR before bed.

As others have, you need whatever insulin you need and there is a huge range of what is normal. This forum is a great place for understanding that and learning to listen to your own body and interpret the results that you get from the different little experiments you try to figure out what is right for you.

A brisk daily walk is a great way of lowering basal needs and losing weight if you are worried about those and able to incorporate that into your day.

Hi Barbara

Thank you for the welcome, and I just read your journey so far in your footer. It's really interesting that you had a fast onset and got put on insulin pretty much straight away. Mine have been up in the 100s for the last 18months and I have been asking to go on insulin but being refused as 'it will make you put on weight'. Why a few pounds would be worse than the vascular and kidney damage that will have been going on is something the DSN, now that I actually get to see one, and I are confused over. Unfortunately my GP practice has been without a diabetic nurse for about 3 years and I couldn't get them to refer me into specialist care - that only happened after my DKA when the hospital got involved. I officially started on regular insulin on 2nd of May, as it took 3 days to get my ketones back down into normal range and for me to be stable enough to come off sliding scale. I'm told I was probably a couple of hours away from coma and, as I live alone, I count myself very lucky to still be here to message you.

In terms of carb counting, I was keeping a food diary and recording my carbs before this so it was only another little step to figure out my correction factor and ratio. The BERTIE course really helped and I did that while I was laid up in hospital.

I have a completely desk-based job which does limit my activity, however I've bought an under desk cycle so I can paddle away while on the dreaded Teams meetings and I'm going to save up and buy one of those fancy walking desks with treadmills underneath. Despite the claims that insulin will make me put on weight, the opposite actually seems to be true at the moment. I guess because my liver isn't packing everything I eat up as fat as the last thing I needed was more sugar.

The correction bolus is pretty high but only keeps me roughly level. I go to bed about midnight and I'd been doing night time checks when I get up for the loo and they seem to go up about half 3 - 4am, so the bolus at midnight isn't perfect but I'm on 30u of triceba at the moment and DSN doesn't want to push it any further until I've seen consultant. For e.g. last night I had my last food at 7.30pm, with 22u, went to bed at 13.7 and put in 5u, woke up at 14.7!

But I know you're right, and this is only very early doors. The DKA was a really big wake up call though, and not something I was warned about or even knew what to look out for. Certainly don't want to get there again.

All the Best

Rae

 

[rebrascora]

If it helps any, I am currently a normal BMI (just.... could do with losing 4-5lbs) and still need 30+ units of basal insulin sometimes. I am on Levemir so I can adjust the day and night time doses according to what my body needs.... currently 22 in the morning and just 4 at night. It concerns me that I now need so much basal (it went up significantly after my first Covid Vaccine and never came down) but I am trying to accept that "you need what you need" when it comes to basal and as long as my BG levels are stable in the absence of food then these are the correct doses for me as an individual. I try to follow a low carb way of eating because it helps me manage my disordered eating and sugar addiction but it means that some days I need less than 10 units of bolus insulin total, sometimes less than 5 depending upon how active I am and what I choose to eat.

I dread to think how scary a DKA must have been and I do sympathize with your struggle to get the appropriate diagnosis and more importantly treatment ie insulin. Sadly it is a common occurrence that we read about and encourage people to push for testing here on the forum.... as people did with me when I first came here. Thankfully I had a good diabetic nurse at my surgery who knew her limit of training/understanding and recognized that I was not a straightforward Type 2 and was having case conferences with the consultant during my early weeks of diagnosis. I think some diabetic nurses, especially more experienced ones, see it as a failure to seek advice or suggest referrals and of course there may well be a cost implication to the practice which further adds to the resistance... and of course, now with Covid and the diabetes clinics being so overwhelmed and behind with their workload, it is even harder to make those referrals. Not an excuse as such but you can sort of understand why the system is failing people.

So good to hear that you now have a supportive DSN and the right treatment. It is important to bring levels down slowly with insulin so it may be for this reason that they are reluctant to increase your Tresiba just yet. Dropping levels too quickly can cause damage to the fragile blood vessels in the eyes and feet, so try not to be in too much of a hurry to get in range BG levels. Slow and steady is the way to go, especially when they have been so high for a good while.

 

[Rae]

If it helps any, I am currently a normal BMI (just.... could do with losing 4-5lbs) and still need 30+ units of basal insulin sometimes. I am on Levemir so I can adjust the day and night time doses according to what my body needs.... currently 22 in the morning and just 4 at night. It concerns me that I now need so much basal (it went up significantly after my first Covid Vaccine and never came down) but I am trying to accept that "you need what you need" when it comes to basal and as long as my BG levels are stable in the absence of food then these are the correct doses for me as an individual. I try to follow a low carb way of eating because it helps me manage my disordered eating and sugar addiction but it means that some days I need less than 10 units of bolus insulin total, sometimes less than 5 depending upon how active I am and what I choose to eat.

I dread to think how scary a DKA must have been and I do sympathize with your struggle to get the appropriate diagnosis and more importantly treatment ie insulin. Sadly it is a common occurrence that we read about and encourage people to push for testing here on the forum.... as people did with me when I first came here. Thankfully I had a good diabetic nurse at my surgery who knew her limit of training/understanding and recognized that I was not a straightforward Type 2 and was having case conferences with the consultant during my early weeks of diagnosis. I think some diabetic nurses, especially more experienced ones, see it as a failure to seek advice or suggest referrals and of course there may well be a cost implication to the practice which further adds to the resistance... and of course, now with Covid and the diabetes clinics being so overwhelmed and behind with their workload, it is even harder to make those referrals. Not an excuse as such but you can sort of understand why the system is failing people.

So good to hear that you now have a supportive DSN and the right treatment. It is important to bring levels down slowly with insulin so it may be for this reason that they are reluctant to increase your Tresiba just yet. Dropping levels too quickly can cause damage to the fragile blood vessels in the eyes and feet, so try not to be in too much of a hurry to get in range BG levels. Slow and steady is the way to go, especially when they have been so high for a good while.

I absolutely empathise, I work in the NHS myself in an educational capacity and even we've seen incredible asks on time and resources. The nursing shortages sadly were there before covid and have definitely not gotten better.

However I absolutely didn't know that about sugars dropping too rapidly, only the effect of persistent high sugar on small vessels, and it makes me feel a bit better. The message I picked up from my GP AHP was I should be back in normal range pretty much straight away, but none standard cases like ours are beyond the expected ask of them. I've only seen the DSN once and my consultant appointment is not for another couple of weeks so I am flying a bit blind. That's why I joined, because there's so much you can't get out of a textbook!

Thanks again, I will be careful and appreciate the advice.

 

[Bloden]

Hi @Rae and welcome. 🙂

 

[nonethewiser]

Nowt wrong with bit of wet weather provided you have right clothes on, being in Cumbria get fair bit our way. Welcome btw.

 

[Rae]

Hello and how-do!

 

[SB2015]

Welcome to the forum @Rae from another late starter with T1 (or LADA but happy with the T1 label)

It sounds like you have got to grips with things and as @everydayupsanddowns says you need what you need. There is no point in comparing your doses to those of others, just focus on working out what you need as your basal your bolus ratios and your correction factors. That is what matters.

If you are still in the hands of your GP Practice it would be worth getting a referral to a Diabetes Specilaist Nurse who will have the knowledge to support you in adjusting your doses, and will understand the need for changing thing things as necessary.

Things keep changing as we change, or the weather does, meds change, …. So it keeps us on our toes, but well done for getting yourself so sorted already. Keep the questions coming. Nothing is considered silly on here. just ask.