LADA after being initially diagnosed as T2

Angela64

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Yes, if you're a suspected T1 (LADA), seeing an endo and having at least a C-peptide test is a very good idea.
Should it turn out to be T1, insulin is the only treatment. For what it's worth, for me, starting insulin (when I was still diagnosed as a T2) was such a relief, I finally had a way to manage my BG instead of just being frustrated with numbers that wouldn't come down.

Excuse my ignorance, I'm not from the UK. But your profile says you're in the UK, why can't you get a referral to an endo on the NHS?

Has your nurse talked about the possible risks of DKA on flozins if you turn out to be a T1?
Hi,
She said a T1 1/2 , a LADA, Im not remembering what the letters stand for. NHS ha ha, sadly I’d be waiting for months and months. She is very knowledgable and we get on really well, I feel that she feels very self confident she can see the patterns. I wore a CGM the last couple of weeks which was very useful, she had all the charts in front of her and yes I could see that my issues are at lunchtime mainly. She has suggested insulin to bring down the GL to help levels.
‘DKA’ & flozins - T1, is that only T1 as she says more like a T1 1/2? She said that I’d be unlikely to have a Hypo, which has been a concern in the past when my number was lower than 6 before going to bed.

So, had spoken to hubs about tests, I know of an expert consultant endo, I saw her when I was recently diagnosed and had gone ‘Low Carb’, she was very very pleased with how I had got my HbA1C so much lower in a short time. SO, thinking of seeing her if possible but it will be self funded as my insurance won’t cover it.

So at the moment I have a foreign holiday in a few weeks, so when I get back I need to make another appointment with her to discuss what I do next. She has ordered me another CGM, so hubs suggested I asked about the tests as really I should include her in this even if I may have a long wait for NHS tests. I won’t wait, fed up big time with everything. I also have had lot of other health challenges causing me stress.:(
 
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Antje77

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She said a T1 1/2 , a LADA
Type LADA or 1.5 are both the same thing, and they both mean T1 diabetes: caused by an autoimmune reaction killing your insulin producing cells. So if it is indeed T1 (LADA, 1.5), you'll produce less and less insulin until you cannot do without, no matter your diet or other medications.
‘DKA’ & flozins - T1, is that only T1 as she says more like a T1 1/2? She said that I’d be unlikely to have a Hypo, which has been a concern in the past when my number was lower than 6 before going to bed.
Flozins become a risk of DKA when you don't produce sufficient insulin. T1's are often advised to test for ketones to rule out DKA when their BG stays in the higher teens or higher for a bit. No ketones, no DKA.
But on flozins it's possible to have reasonable BG and still go into DKA because you pee out the excess sugar.
NHS ha ha, sadly I’d be waiting for months and months. She is very knowledgable and we get on really well, I feel that she feels very self confident she can see the patterns.
I'm so sorry about the state of the NHS.
Can your nurse order a C-peptide test?
 

Angela64

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Type LADA or 1.5 are both the same thing, and they both mean T1 diabetes: caused by an autoimmune reaction killing your insulin producing cells. So if it is indeed T1 (LADA, 1.5), you'll produce less and less insulin until you cannot do without, no matter your diet or other medications.

Flozins become a risk of DKA when you don't produce sufficient insulin. T1's are often advised to test for ketones to rule out DKA when their BG stays in the higher teens or higher for a bit. No ketones, no DKA.
But on flozins it's possible to have reasonable BG and still go into DKA because you pee out the excess sugar.

I'm so sorry about the state of the NHS.
Can your nurse order a C-peptide test?
I am not sure if she can, I will have to ask when I re-book with her after my holiday. I think that she does have the ear of the drs. They do listen to her because of her experience and length of time she has worked in the practice.
 
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DiabeticBear

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Hi Angela - I was lucky enough to be able to speed up the diagnosis through my Bupa at work ( not free though! ) - but initially I was referred to an endocrinologist via the NHS and I had a choice of 3 clinics come through on the app after a week or so - I think the quickest appointment was around 8 weeks, longest was around 12 weeks. The doctor himself couldn't submit the antibody tests - had to go through the endo. Could you perhaps try to get the ball rolling before your hols directly with the doctor? If you are potentially on the wrong treatment regime better to find out sooner rather than later - especially as you mention your nurse said about taking insulin. Before I started taking insulin I feel there was no way I could suffer a hypo - once you start taking it you have to be very hypo aware. Still getting use to my dosing at the moment - I've heard the analogy of it being a marathon not a sprint. I have good days and not so good days - but my time in range is gradually improving and my last HbA1c test was better too (52) so going in the right direction. All the very best with getting your referral
 

Angela64

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Hi Angela - I was lucky enough to be able to speed up the diagnosis through my Bupa at work ( not free though! ) - but initially I was referred to an endocrinologist via the NHS and I had a choice of 3 clinics come through on the app after a week or so - I think the quickest appointment was around 8 weeks, longest was around 12 weeks. The doctor himself couldn't submit the antibody tests - had to go through the endo. Could you perhaps try to get the ball rolling before your hols directly with the doctor? If you are potentially on the wrong treatment regime better to find out sooner rather than later - especially as you mention your nurse said about taking insulin. Before I started taking insulin I feel there was no way I could suffer a hypo - once you start taking it you have to be very hypo aware. Still getting use to my dosing at the moment - I've heard the analogy of it being a marathon not a sprint. I have good days and not so good days - but my time in range is gradually improving and my last HbA1c test was better too (52) so going in the right direction. All the very best with getting your referral
Thanks. I’ve phoned surgery and hope to speak with the dr to see about referral/s. Think I’d just like to get a definite answer on type because at the moment it seems like guessing. I do fully trust my nurse but just want solid answer to be able to manage right decisions.
Thanks
 
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Peter OConnor

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Hi - I am posting this in case it mirrors anyone else' experience - someone can perhaps provide advice or it might help someone get to the bottom of their symptoms

I was diagnosed with Type 2 diabetes in Jan 2022 with an HbA1c of 99. I was immediately prescribed 4 metformin a day, but I did some research and decided to give low carb/exercise a go. I ignored the metformin, went low carb, hit the treadmill and within a year I lost 30kg (down from 120kg) and got the HbA1c down to 41. I was very happy as I was determined not to take the pills.

However by the end of 2023 my HbA1c had crept back up to 83 - I blamed myself for being less strict over the summer food wise, I had picked up an injury which set me back a little exercise-wise but had kept the weight down and thought I was doing okay so it was upsetting. So 2024 has been about being stricter on the regime, started using a CGM, but no matter what I did the only way I could get my blood sugar to acceptable levels was more and more exercise, to the point it was getting me down, it was becoming all consuming. My last HbA1c was 57 in September - my regime just wasn't doing enough anymore and I can tell from my CGM it isn't tracking to go down. My blood sugar would creep back up again without eating and I was getting very frustrated with it. Even with an low-carb meal ( < 10g) my blood sugar would seem to spike disproportionately and stay high unless I exercised - I felt something was 'off' - as though there was another factor at play.

I spoke to my GP who basically just wanted to put me on metformin because 'that is what we do for T2 patients' but I insisted I wanted to eliminate other contributing factors so got referred to an endocrinologist - the GP couldn't request those sorts of tests himself. I ended up going privately as the wait was too long and was concerned about my blood sugar riding so high.

Yesterday I had the results and have been told that I am not T2 but actually LADA and I am currently awaiting someone to contact me from the local diabetes team regarding going onto insulin. The theory is that whilst I am still producing insulin ( honeymoon period?) it isn't sufficient to win the battle with diet and exercise alone.

Given there seems to be a common reporting that 10% of T2 diabetics are misdiagnosed and are in fact LADA I find it incredible that LADA is not even mentioned on the NHS website, mentioned by the GP nor tested routinely ( cost I suspect ) - I really shouldn't be asking for a c-peptide test just because I read about it on the internet! I will always wonder if I had the test back in 2022 I could have done things differently.

I am obviously disappointed that I will be going down the insulin path but I will be maintaining my diet/exercise which will hopefully keep my dose as low as possible for as long as possible.

Thanks for reading this far :)
this mirrors my experience almost exactly. Diagnosed type 2 6 years ago with HBA of 66. lost weight and low carb for 5 years reduced it to 38-40. then October sicker than Ive ever been. HBA1C of 110. Now about to go on insulin pump. there is nothing you or I could have done differently, we did what we could and we delayed this. Its a head destroyer but I am planning on getting my life back. You will too.
 
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Peter OConnor

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LADA
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I was diagnosed as type 2 two years ago. My consultant now thinks I've LADA because of decreasing cpeptide, weight loss (already slim), poor response to metformin, etc. Blood tests not showing any antibodies though. Has anyone else experienced negative antibodies who had LADA? Thanks
yes you can have no antibodies and still be LADA
 
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Big VP

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LADA
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What tests do you need for LADA, my HBA1C is 107, currently waiting for Endo referral which says it has an average waiting time of 17 weeks. Meanwhile the GP is doing nothing and I feel terrible. Low cortisol aswell.
You need a GAD 65 antibodie test
 

searley

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yes you can have no antibodies and still be LADA

Just to confirm this was the case for me

There eat always a back and forth about me being T2/T1 lada

But because I never had had antibodies my consultant kept me listed T2

Eventually I said if I’m t2 I’m stopping insulin, the introduction of tables saw no reduction in BG so was to have genetic testing done, and the did cpep and came straight back said I’m T1

I think things are not always clear cut with lada which is why many first get told they are T2
 

Alexandra100

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I ignored the metformin
Hello, just a quick reply because it is after my bedtime.
Metformin used until recently to be considered a med for T2s, but nowadays many T1s take it, to help with insulin resistance and keep their insulin injections as small as possible. It is thought not to have a huge effect, but it is considered very safe. It is one of the oldest diabetes drugs, if not the very oldest, so tried and tested. It is also said to have quite a few beneficial effects. I suggest you seek out some videos on the subject on Youtube. Dr Brewer has posted some.
Should you choose to take it, the worst side effect can be a very upset stomach. It is wise therefore to start with a low dose and increase gradually.
 

Antje77

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My endo told me that LADA isn't real so I wonder if that's why the NHS don't acknowledge it...regardless, there should be more awareness about how diabetes can present as the current understanding is so lacking. Type 1 is assumed to be rapid onset and only occurring in children and type 2 is associated with adults or people who are overweight and there's no in between in most people's minds.
LADA is real, but it's simply recorded as T1, because that's what it is. An autoimmune reaction killing off the beta cells.
The mean age of a T1 diagnosis (including LADA) is 24, not at all something mainly occurring in children.

1740951647281.jpeg
 
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Chris24Main

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@Aurelie - LADA is real - not questioning that at all.

But - the other way to look at this is - You may or may not have a failing Pancreas (actually a tiny part of a tiny part of your pancreas)

If you are (because of an auto-immune attack) - there is nothing that will prevent, and you will be T1 like your dad.
If you are not (and the issue is mainly insulin resistance, even though it may look exactly the same) - your pancreas is capable of recovery and this can be reversed.

I'm not saying it must be one way or the other. My own experience is somewhat opposite - I was diagnosed as "we don't know, but lets say T1 and start on insulin" - and if that had continued, I would be in exactly the same situation as @Antje77 - dosing insulin and marking up LADA on my profile.

However, because one consultant forced a C-Peptide test (which looks for internally produced insulin) - my diagnosis was reversed, and I leaned very heavily on lifestyle modifications to focus on my liver.
I'm not, and cannot of course, say that any of this applies to you, but if I had continued insulin, it would simply have been impossible to tell the difference.

The temptation will be to start insulin, because that will seem to be the obvious choice, but don't give up on your pancreas until you know for sure (again - not advice to do anything, only that you should think and talk this through; once you start on a course of action, it may force you to stay on that course).

The other thing to mention, is that tasting ammonia would indicate too much protein - we are all told to avoid fat, and if we start to reduce carbs, the temptation is to reduce carbs without increasing fat. However - that means the amount of energy available goes down, and the body will start to metabolise protein for energy - this is not a good state of affairs, because that will actually generate the very kinds of toxins around your body that contribute to the inflammation which may be affecting all sorts of things.

(Put simply - the difference with protein is that it contains nitrogen. The liver can pretty much swap fat into glucose and back again, because it's all carbon and hydrogen. Proteins contain nitrogen, and if that is oxidised - burned for energy, you get lots of left over nitrogen in the form of ammonia)
 

Antje77

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The other thing to mention, is that tasting ammonia would indicate too much protein - we are all told to avoid fat, and if we start to reduce carbs, the temptation is to reduce carbs without increasing fat. However - that means the amount of energy available goes down, and the body will start to metabolise protein for energy - this is not a good state of affairs, because that will actually generate the very kinds of toxins around your body that contribute to the inflammation which may be affecting all sorts of things.
Do you have a source for this?
Are you talking about too much protein in diet or too much protein in the bloodstream?
If the first, how come we have so many members doing well on a close to carnivore diet?
If the second, there can be different causes for changes in taste, we can't diagnose.
 
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Chris24Main

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@Antje77 - The source is basic chemistry - only proteins have nitrogen, so if you taste ammonia, that's because your body has some nitrogen to get rid off.
But in the interest of the forum rules (this really isn't a contentious point, so here's a link from runners world)

In the context of a diet which is low in carbs and fat and sufficient exercise - what else is going to happen?

@Aurelie -
Firstly - please remember I'm not offering advice, you've done the obvious and sensible thing. DKA is for sure something that the medical establishment is worried about, because it can kill type 1 diabetics. DKA, however; is the unregulated production of ketones, usually in the presence of high blood glucose.

Let me break it down.
Fats can be used for fuel throughout the body. for example the majority of the energy that is consumed in your heart is from fat. When glucose is present, the body will use that first, because as we know, lots of glucose in the blood is toxic.

So - if you always have "enough" circulating glucose, every part of your body can use that for fuel. That is the underlying reason why it's often described as the body's preferred source of energy. Muscle cells can just use glucose, where most other cells need insulin to tell them to use it.

Now, if you lower your blood glucose, by lowering carbs and exercising, insulin will drop, and 2 things will happen.

1 - your body will flip into using fat for energy. This is totally natural, and if you consider that we can store about a day worth of energy as glucose (a kind of animal starch called glycogen) but can store months of energy as fat, you can decide for yourself what that tells us about preferred sources of energy.

2 - fats are too big to pass into your brain, so that still needs a supply of energy. To cover this, your liver will continue to create glucose, and also turn excess fat into ketones - these are like pre-digested fats - they are "clean energy" for the brain, but also may do some additional cleaning up work in the brain as well.

Now - what is happening in DKA, is that the brain is starving because the brain also needs insulin to use that glucose, and in a T1 in trouble, there is none, even though glucose may be through the roof - so the liver goes into panic production of ketones, which is enough to turn the blood acidic. However, in a person with a functioning pancreas who is not taking medication to drop insulin, the thing that regulates ketone production is ... insulin. So; ketone production is also totally normal. Babies are born in ketosis, and most animals are in ketosis most of the time.

The only thing that may be different in your case, is that you may not have excess fat, from your diet or otherwise, and so the liver will turn to protein to make ketones - the brain cannot be allowed to starve. Some of this protein will also be remade into glucose; and both processes result in some nitrogen having to be expelled from the body.

For me- one of the biggest changes I had to make was wrapping my head around the idea that fat is actually not the enemy. Sugar and starch is the enemy, and in that fight, you can actually use fat as an ally - it becomes your source of energy for more of the time.

What you do, of course, is up to you, but that's why you are being advised to take more carbs - the medical establishment struggle to advise taking more fat.. and essentially you have to do one or the other to avoid your liver having to use protein.

Ketosis may not be your goal. That's fine, but there is growing evidence that being in ketosis some of the time, is totally natural and beneficial for metabolic and mental health. In other words, there is nothing to fear about having measurable ketones (unless you are type 1 and also have high blood glucose - even Type 1 diabetics can benefit from ketosis, it's just a little more difficult).
 

Chris24Main

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I managed not to reply to your earlier post - what did your endo say about your antibody test, and is there a reason for not wanting to do the C-peptide?

You mentioned surprisingly sudden glucose spiking and wanting to reduce that - when did that start happening?
 

Chris24Main

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Ok - so there are some patterns here, but (if you haven't already figured this out yourself) - It does not seem that you are a "normal" case - and I say that completely neutrally - only in the sense that you should take care listening to anyone, and especially me...

first and second phase insulin response gets you into reactive hypoglycaemia territory, but even there, there are a couple of different ways of looking at things.
Your pancreas will normally store some insulin, to use immediately (this can be released even by thinking about food) - that is the first phase.
Then - once that is gone (or, if it was never there, in the case of long-term low carb) the pancreas starts to produce more - this is the second phase.
If the spike is high, or the rate of change very sudden, the brain can also get involved and release it's own hormones, like adrenaline and cortisol - call that extreme phase 2.

if that's all working well, balance is maintained quickly. But - we're only here because things are not working well...

There is quite a lot of good evidence that absent a massive immune system attack, the beta cells kind of shut down. It's all very complex, and at the level of stuff going on inside the cell, but they go dormant, and eventually de-differentiate ("forget" that they are β cells).

But - even after some time, you have stem cells that can stimulate re-growth, there is lots of evidence that the cells can recover.

The reasons this can happen are legion, but congregate around the concept of inflammation. What causes inflammation? - well, life; it's unavoidable, but a question of how much, and what your level of coping is (anti-inflammatory, or immune system). But, Covid-19 is one of the things in recent times that causes lots of sudden inflammation. I read in some journal, that it was better thought of as a metabolic inflammatory disease that resulted in respiratory problems, than a disease of respiration. I'm going way way off line, but sudden infection can definitely affect the pancreatic β cells - and we're back to the central question of - can the pancreas recover or not.

and I don't know.

The best I can come up with is that processes that lead to unrecoverable β cells seem to be very sudden (classic type 1) or much slower.
The thing I'm desperately trying to research myself is - under what conditions can you hope for recovery, and what can you do to help.
But - the confusing thing, is that antibodies and inflammatory particles can often be the same thing, so my reading is that in some cases - insult to the pancreas tail (for a bunch of reasons, but which could include COVID - my own GP told me that she had heard of COVID "stunning" the pancreas, which fits within this line of thought) can result in the presence of GAD antibodies, but that this is acute, and just part of healing -
https://pubmed.ncbi.nlm.nih.gov/19881242/
(as one example)

So - if you have had a quick (but not sudden and catastrophic) change - and you are still clearly producing insulin... then it's worth doing what you can to give the pancreas a chance to heal...

What does that look like? - well, if I had a clear answer to that ... but I think it has to involve reducing background inflammation, oxidative stress, and insulin resistance by whatever means you can - that lets the cells heal, improves their metabolism, and reduces the need for them to do work, which again lets them heal.

for myself - I think you can't beat intermittent fasting for checking all those boxes - but that's me; I'm convinced, but it doesn't work for everyone.

I know that's a lot - I hope it helps; but I do realise it's a lot..
 

Chris24Main

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If you're talking ACE-2 receptors, then you're talking my language.... :cool:

Great - so at the very least I know you're on the same wavelength.
Timing - who knows ... @Antje77 was very much 2 years and done. I'm not so much saying that antibodies are acute, so much as they are a reaction to something. If you keep on exposing them to that thing, it might become permanent, but if you can remove the exposure, maybe it can heal.

Clearly you no longer have Covid virus active in your body.. but inflammation is a constant battle throughout the body all the time.

That one case study is very much along the kind of lines I was drawing - she was diagnosed, wasn't very much in control, then stopped taking insulin while in prison, and spontaneously got better. Hmmn - maybe the insulin wasn't the thing she needed after all.

But - single cases are tricky, we really are amazingly complex.

I'm really not pushing the fasting angle - if you are starting from a point of feeling low and exhausted, it may not be a good direction. I totally believe in it's effectiveness, but there is no point denying that there is a psychological hill to climb first, so to speak.