Positive for LADA

[iwilltouchyourcat]

Well it’s official… I have LADA. Antibodies through the roof despite c pep coming back that I am producing a decent amount of insulin. I have to get repeat bloods and they’re getting me a Libre on prescription. Doc was nice, praised me for doing low carb/if and losing weight and for being 92% in range. Not sure how to feel really.

 

[HSSS]

Well I guess it answers your questions about why you are getting the high blood glucose levels.

I’m wondering if your decent levels of insulin output are erratic or only at certain points of the day thus allowing the spikes you see.

Or even if you are also a bit insulin resistant, with the excess weight, so “normal” insulin amounts aren’t good enough and the situation will only deteriorate as your production slows. Maybe you had even higher levels in order to cope and the antibodies have reduced that. I think that’s called double diabetes but I know next to nothing about it but I guess there’s nothing to stop a type 2 also getting type 1 other than the fact type 1 is comparatively rare.

(Just wild guesses that might explain the conundrum not medical explanations)

I presume now the question will be when insulin is the right next step. I’ve seen other LADA delay as long as possible and others go to it immediately to preserve beta cells as long as possible.

 

[iwilltouchyourcat]

Well I guess it answers your questions about why you are getting the high blood glucose levels.

I’m wondering if your decent levels of insulin output are erratic or only at certain points of the day thus allowing the spikes you see.

Or even if you are also a bit insulin resistant, with the excess weight, so “normal” insulin amounts aren’t good enough and the situation will only deteriorate as your production slows. Maybe you had even higher levels in order to cope and the antibodies have reduced that. I think that’s called double diabetes but I know next to nothing about it but I guess there’s nothing to stop a type 2 also getting type 1 other than the fact type 1 is comparatively rare.

(Just wild guesses that might explain the conundrum not medical explanations)

I presume now the question will be when insulin is the right next step. I’ve seen other LADA delay as long as possible and others go to it immediately to preserve beta cells as long as possible.

Thank you it certainly explains the odd spikes. The doc suggested the same as you- erratic pancreas production- hence she wants a repeat c pep test. Also asked me to eat beforehand as last time I was fasting at the time of the test. Also realised I’ve lost nearly 20kilos in 12 months and she said this may have improved my insulin sensitivity too. So plan at the moment is to see what the repeat bloods say and take it from there but either way insulin is inevitable and I feel a little vindicated that despite my best efforts there is little I can do about it. I will continue to stick to low carb and IF as it has helped my overall blood sugar levels and the spikes are less ‘spiky’ for now- I rarely get double figures any more. Plus I get my Libre free rather than paying for it myself. Took me getting dka to find out but I’m here and it is what it is

 

[HSSS]

Thank you it certainly explains the odd spikes. The doc suggested the same as you- erratic pancreas production- hence she wants a repeat c pep test. Also asked me to eat beforehand as last time I was fasting at the time of the test. Also realised I’ve lost nearly 20kilos in 12 months and she said this may have improved my insulin sensitivity too. So plan at the moment is to see what the repeat bloods say and take it from there but either way insulin is inevitable and I feel a little vindicated that despite my best efforts there is little I can do about it. I will continue to stick to low carb and IF as it has helped my overall blood sugar levels and the spikes are less ‘spiky’ for now- I rarely get double figures any more. Plus I get my Libre free rather than paying for it myself. Took me getting dka to find out but I’m here and it is what it is

Sadly it seems to take a dka for lots of type 1 to be diagnosed, whether that’s from “normal” or a misdiagnosis of type 2.

 

[AndBreathe]

Well it’s official… I have LADA. Antibodies through the roof despite c pep coming back that I am producing a decent amount of insulin. I have to get repeat bloods and they’re getting me a Libre on prescription. Doc was nice, praised me for doing low carb/if and losing weight and for being 92% in range. Not sure how to feel really.

Whilst I'm so sorry you have a diagnosis you didn't want, at least now you know. That will allow you to be looked after appropriately.

The very harsh reality is many who are erroneously diagnosed T2 have a very tough time working hard keeping things in some sort of shape, against all the odds, with escalating T2-appropriate meds and increasing blood glucose. They often end up feeling very down angry. Once they end up on insulin, their doctors just declare the insulin dependent T2, without further investigations.

Thankfully, you have not had to go through that.

I do hope you can move forward positively. I don't envy you, but at least you know.

 

[Mrs HJG]

Hey @iwilltouchyourcat welcome to the LADA train. Just a couple of thoughts and things to share, I was recommended at my re-classification (private) consultation to take a Vitamin D supplement, and maybe Selenium; when possible go for a low gluten/gluten-free options and keep the BG spikes as small as possible to stop stressing my pancreas - I was already doing most of this, following the wise words on this forum, although not consciously doing the gluten thing due to low carb and avoiding the usual gluten-loaded foods anyway.

I cut my Metformin in half to 2x500g/day as the consultant said there were still many benefits to taking it, though how beneficial to my BG could be negligible - I have had no real increase in average BG since reducing. He did say to question any additional drugs the 'younger' diabetes team may suggest to ensure nothing increases insulin production/overworks the pancreas; I have no knowledge how gliclazide works, but as you are not T2, might be worth checking.

I was also told that if my waking BG is (unexplainably/frequently) >6 and spikes >8 then that's probably the time to start on a small amount of insulin.

You might be doing all this already or been told something more relevant to you and your situation, but thought it worth a mention; and not saying my consultant is the best, but seems not all consultants were created equal and I think I got a good'un for diagnosis

I am also now following many of Jessie Inchauspé's hacks; I think she is great, (but I am not up to getting in an argument with anyone on here about her messages/methods etc). She re-booted my diabetes 'interest' having become bored with the whole thing at only 5 months in.

I'm interested to see how your non-fasting C-peptide differs from the first one though. Take it easy.

 

[iwilltouchyourcat]

Whilst I'm so sorry you have a diagnosis you didn't want, at least now you know. That will allow you to be looked after appropriately.

The very harsh reality is many who are erroneously diagnosed T2 have a very tough time working hard keeping things in some sort of shape, against all the odds, with escalating T2-appropriate meds and increasing blood glucose. They often end up feeling very down angry. Once they end up on insulin, their doctors just declare the insulin dependent T2, without further investigations.

Thankfully, you have not had to go through that.

I do hope you can move forward positively. I don't envy you, but at least you know.

Thank you for your thoughtful reply. I am lucky that I don’t have to go further down the route of being told of /judged for not managing my diabetes and have an explanation as to why it suddenly all fell apart. And also it prompted me to lose the excess weight and generally feel healthier as a result so that’s a bonus. I know what I’m dealing with now. I have answers so even if those answers suck a little I can have a plan.

 

[iwilltouchyourcat]

Hey @iwilltouchyourcat welcome to the LADA train. Just a couple of thoughts and things to share, I was recommended at my re-classification (private) consultation to take a Vitamin D supplement, and maybe Selenium; when possible go for a low gluten/gluten-free options and keep the BG spikes as small as possible to stop stressing my pancreas - I was already doing most of this, following the wise words on this forum, although not consciously doing the gluten thing due to low carb and avoiding the usual gluten-loaded foods anyway.

I cut my Metformin in half to 2x500g/day as the consultant said there were still many benefits to taking it, though how beneficial to my BG could be negligible - I have had no real increase in average BG since reducing. He did say to question any additional drugs the 'younger' diabetes team may suggest to ensure nothing increases insulin production/overworks the pancreas; I have no knowledge how gliclazide works, but as you are not T2, might be worth checking.

I was also told that if my waking BG is (unexplainably/frequently) >6 and spikes >8 then that's probably the time to start on a small amount of insulin.

You might be doing all this already or been told something more relevant to you and your situation, but thought it worth a mention; and not saying my consultant is the best, but seems not all consultants were created equal and I think I got a good'un for diagnosis

I am also now following many of Jessie Inchauspé's hacks; I think she is great, (but I am not up to getting in an argument with anyone on here about her messages/methods etc). She re-booted my diabetes 'interest' having become bored with the whole thing at only 5 months in.

I'm interested to see how your non-fasting C-peptide differs from the first one though. Take it easy.

Thanks so much for the reply and the welcome into a club none of us want to be in! I haven’t heard about Jessie inchauspe but will look her up. I have coeliac disease so I am already gluten free- in fact the nurse at the diabetes clinic hearing I was coeliac resulted in her suspecting I had LADA and got me the tests as apparently already having an autoimmune disease increases the likelihood of Lada/type1.

The consultant seemed to really know her stuff and was very supportive but I’m still very wary of doctors and nurses (despite being a nurse myself!) because I’ve had so many judgmental and dismissive responses since the initial t2 diagnosis. I remember a few years ago asking my gp could the diabetes be linked to coeliac disease in any way and without looking up from his note taking, his reply was ‘no you’re just very fat’. They’ve always been so preoccupied with my weight -which I get- and it’s only now I’m no longer obese they are taking me more seriously and this diagnosis has happened.

Anyway onwards and (blood sugar readings) downwards!

 

[AndBreathe]

Thank you for your thoughtful reply. I am lucky that I don’t have to go further down the route of being told of /judged for not managing my diabetes and have an explanation as to why it suddenly all fell apart. And also it prompted me to lose the excess weight and generally feel healthier as a result so that’s a bonus. I know what I’m dealing with now. I have answers so even if those answers suck a little I can have a plan.

It's a great idea to have a plan, and reading from your other replies on this thread I can tell you will be proactive.

I've said it so many times before and will repeat until I am blue in the face, but there has never, ever been a more important time to be a strong advocate for our own health. Expecting others to be proactive is a fast-track to disappointment and frustration all too often.

Good luck with it all. As I understand it, the learning curve can be steep, but at least you have an inkling of the learning curves you need to address.

 

[iwilltouchyourcat]

It's a great idea to have a plan, and reading from your other replies on this thread I can tell you will be proactive.

I've said it so many times before and will repeat until I am blue in the face, but there has never, ever been a more important time to be a strong advocate for our own health. Expecting others to be proactive is a fast-track to disappointment and frustration all too often.

Good luck with it all. As I understand it, the learning curve can be steep, but at least you have an inkling of the learning curves you need to address.

Thank you for the encouragement it’s appreciated. Yes you are totally right, I’m lucky that I am not so worn down and have a little medical knowledge to be somewhat confident enough to advocate for myself, but a lot of people understandably aren’t - for various reasons- and end up feeling judged and feel like they have no choice but to take everything they are told at face value and cant push for anything more. The learning curve will be steep but like you say I am now armed with more knowledge thanks to this (albeit unwanted) diagnosis.

This forum has been invaluable.

 

[AndBreathe]

Thank you for the encouragement it’s appreciated. Yes you are totally right, I’m lucky that I am not so worn down and have a little medical knowledge to be somewhat confident enough to advocate for myself, but a lot of people understandably aren’t - for various reasons- and end up feeling judged and feel like they have no choice but to take everything they are told at face value and cant push for anything more. The learning curve will be steep but like you say I am now armed with more knowledge thanks to this (albeit unwanted) diagnosis.

This forum has been invaluable.

The bottom line is we all judge and are judged all the time. We don't necessarily mean to, but it can be a fine line. Some judgements are easier to carry than others, but being judged as not trying, or not caring can be very hurtful and discouraging, for sure.

 

[Mrs HJG]

I remember a few years ago asking my gp could the diabetes be linked to coeliac disease in any way and without looking up from his note taking, his reply was ‘no you’re just very fat’.

You have definitely weathered the storm so far!