LADA after being initially diagnosed as T2

[Antje77]

I don't think a C-peptide test would be very useful at this point. you're clearly producing enough insulin at the moment to make you hypo, and you are producing enough to not go crazy high (like 20's high). My prediction would be that your C-peptide would be in the normal range because of your normalish BG.
With the antibodies plus erratic but not diabetic BG, I would take the possibility of developing T1(LADA) in the future seriously.

Timing - who knows ... @Antje77 was very much 2 years and done.

Uh, no, I begged for insulin after a month of orals (gliclazide), low carb, and testing, and I was on a full blown T1 type basal and bolus insulin regime within two months, which worked (and works) very well for me.
Rediagnosis after two years was mostly paperwork, it didn't change my treatment.

 

[Chris24Main]

Rediagnosis after two years was mostly paperwork, it didn't change my treatment.

Poor phrasing on my part.. I only meant that in comparison you were definitely a T1 after 2 years.. where @Aurelie is now.

 

[Antje77]

Would it rule out type 2/IR or would a fasting level not reflect that?

Seeing as you do not have diabetes at the moment (despite having pretty wildly fluctuating blood glucose) it wouldn't rule out/in any type of diabetes because you're currently not diabetic.

Even a diagnosis of IR wouldn't rule out a future diagnosis of T1, and having T1 doesn't rule out IR either.
Your numbers prove you are producing insulin. A C-peptide test could show an overproduction (IR), like it could in any non diabetic. But with the positive antibodies you'd likely be diagnosed with T1 if you ever develop diabetes. But you haven't.

A lowish C-peptide may rule out IR, but not necessarily if you've been eating low carb. Fewer carbs means less insulin needed and less insulin produced. Interpreting a C-peptide result is not a straightforward thing: it measures how much insulin was produced in a very short period of time, which is dependant on what happened metobolically during this time. So the interpretation has to be done alongside a current BG, it's about comparing multiple factors agains eachother.
Easy if the C-peptide is very high with normal BG (T2/IR), easy if the C-peptide is very low with high BG (full blown T1), not so easy on the various middle grounds.

 

[Chris24Main]

Totally agree with @Antje77 on this.
The primary purpose of a C Peptide test is that for someone who is injecting insulin, you can also tell if the pancreas is independently making more. You already know you are producing insulin.

I'm not sure whether it's a comfort or not, but statically IR is very common. 27% of the entire population in the UK, and the majority of the US.

 

[MarthaD]

As of today, I've just been diagnosed as LADA and will be starting insulin. Was diagnosed as type 2 three years ago. I'm quite daunted, but really glad to have some answers. I had to battle convince the NHS to refer me to an endocrinologist, but I eventually won that battle and struck gold with a great consultant.

 

[silverbirch]

There always seems to be a confirmation bias at play with a Type 2 diagnosis. If you are older with raised blood sugars, because 90-95% of diabetics are Type 2 you must be too. It’s quite startling. It’s only when you have exhausted every blood lowering medication do they think autoimmune diabetes. My brother was Type 2 for a few years, kept his blood sugar in the prediabetic range, until his blood sugars went into the 40’s with diabetic keto acidosis symptoms. They then tested his c-peptides and tested for autoimmune antibodies he got a Type 1 late onset diagnosis.

My brother just went with the flow. Good for you for pushing to find out what was going on with your blood sugars. You got the correct diagnosis.

@Melgar, this happened to me too. Was misdiagnosed in 2013 as T2. Struggled for 2 years with bg getting higher and higher. Had GAD and C-Peptide test which both came back as abnormal, was told by nurse that it is T1 but my medical notes still said T2. But today after 10 years of trying to sort this out my new GP finally decided to check back and said yes you're definitely T1 and I will change this today. It's only taken 10 years to sort out. So yes because I was 66 when first diagnosed with T2, and of course "older people" don't get T1 you are right. It's a case of let's go by the medical books and not what's happening in front of your eyes.

 

[silverbirch]

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.

@Seaside34 think you need to ask for a GAD antibody test and also a C-Peptide test. A GAD test is a blood test which measures whether the body is producing a type of antibody which destroys its own GAD cells. Presence of these autoantibodies suggests type 1 diabetes. A C-peptide test measures the amount of C-peptide in the blood or urine. The pancreas releases C-peptide when it makes insulin. The test can help determine the type of diabetes you have or how well diabetes treatments are working. If the results come back as abnormal then it's likely you are T1.

 

[Elmas]

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

Are you on insulin now? Thanks.

 

[DiabeticBear]

Are you on insulin now? Thanks.

Hi Elmas

I am indeed - I currently take 13 units of Semglee (basal) per day and Trurapi (bolas) with meals - I try to keep my bolas insulin intake lower if possible, for example if I am at home I use exercise in the mix too. I find judging it for exercise and alcohol is probably the trickiest part. So far managing (mostly) to keep things under control, but have put a fair amount of weight on since despite maintaining a relatively low carb diet and exercise regime which gets me down a bit. They did say I might put a little on once on insulin, but have gained 10kg ( still down 20kg from my heaviest ).

 

[DiabeticBear]

As of today, I've just been diagnosed as LADA and will be starting insulin. Was diagnosed as type 2 three years ago. I'm quite daunted, but really glad to have some answers. I had to battle convince the NHS to refer me to an endocrinologist, but I eventually won that battle and struck gold with a great consultant.

Well done for winning the battle with the NHS - I hope you are getting on okay with your insulin Martha. I struggle to understand why the NHS make the assumption about type 2 when a simple test can pretty accurately diagnose LADA.

The natural assumption would be the cost of the test being prohibitive, but given people are effectively being given the wrong treatment - possibly for years - therefore risking long-term symptoms which then would cost the NHS a lot in the long-term treatment I think it really needs a re-think.

I wonder if perhaps the more LADA they find, the more long-term insulin and related treatment costs they have to pay out for, so they perhaps don't want to diagnose tooo many LADA patients - is that too cynical? I am just trying to understand a rational reason for so many people going misdiagnosed when tests actually exist...and I am not someone who hates on the NHS, far from it.