Opinions - Lada or not?

[pawprint91]

Hi everyone, hope you’re all keeping well.

I had a surprise appt with a consultant on Monday. He wasn’t my usual doctor but is in the same clinic and had a cancellation - I hadn’t been seen for over a year so was happy to have the appointment.

Anyway, he looks at my data and said to me that it was basically like looking at a non diabetics. (My TIR is generally in the 90% on libre). He said he was sure I was doing everything right, but he wondered if I might actually be LADA rather than ‘typical’ T1. He sited my good levels for this and also the fact I had a strong positive GAD antibody. I do work hard to keep on top of my levels (as I’m sure we all do!) so wondering if this is just me doing well or my body still producing insulin.

Now, when I was diagnosed at age 30 (2.5 years ago), my HBA1C was 158, my blood glucose on waking was 22 m/mol, my symptoms came on over 6-8 weeks (after I had covid) and I had lost 1/1.5 stone in that time - previously with a completely healthy and normal BMI. I was started on insulin straight away and my levels took a good while to come down. However I - fortunately- never had ketoacidosis.

I asked the dr if not having ketoacidosis was characteristic of LADA and he said possibly; I also get lots of colds/viruses as I am a primary school teacher, but *touch wood* have only ever had one that really wrecked my glucose levels, so I again asked if the fact my bloods don’t go out of control when ill was LADA related and he again said possibly. I’m now having a c-peptide blood test to try and determine whether I am LADA or straight T1.

What I came here to ask was : does my experience match up to a typical LADA? In my opinion I feel it doesn’t, as I know LADA are often misdiagnosed as Type 2, but can still be given metformin as an initial treatment. I guess if it turns out I am LADA it doesn’t change anything for me as I am on insulin anyway with a 1:10 carb ratio the majority of the time and on 16 levemir units a day (2.5 years on from diagnosis) - I thought LADA was a slower decline. I was also positive for 2 other antibodies, not just GAD - and I read online that usually LADA just have the GAD antibody (could be wrong). I also read that c-peptide can be residual in type 1 for 5 years after diagnosis, so not sure how helpful the next blood test will be with finding the answers.

Again, I doubt it’s going to affect me too much either way no matter the result as I am now on insulin and always have been - sorry as I know there’s a lot of info here but I’m really interested to know what people with other experiences think!

 

[Lucyr]

LADA is just type 1 that develops more slowly, so they might start on metformin first then need insulin later. If your symptoms came on over 6-8 weeks then that doesn’t sound like LADA to me, you went straight to insulin.

 

[Inka]

You were only 30, you had a high HbA1C and significant weight loss @pawprint91 It doesn’t sound like LADA to me. As I’ve said previously, my consultant doesn’t really use the term, but when I pressed her as to when she might possibly use it, she said it would be for someone over 55/60 (can’t remember which) whose diabetes came on slowly.

As you were only diagnosed 2.5 yrs ago, got the insulin early, and have kept good control, then your honeymoon period might still be ongoing.

So, I think, as a non-medical person with Type 1, that you just sound like a normal Type 1. The stuff about your TIR is strange and I’ve never heard that before. I don’t think that’s relevant personally. I’d stick with your normal doctor!

 

[rebrascora]

I would be curious to know what this doctor or consultant means by LADA because my understanding is much the same as @Lucyr's, that it is just a slower onset Type 1 whereas yours sounds pretty sudden. Both may test positive for some antibodies or may test negative and there will usually be some residual insulin production years after diagnosis, although a LADA managing without insulin will likely have quite a bit more insulin production and therefore a higher C-pep result, than a Type 1.
I really don't see where this doctor is going with this or why he feels the need to waste NHS money on testing with a view to changing your diagnosis. It doesn't make any difference to your treatment if you are Type 1 or LADA. You need whatever insulin you need and you are still entitled to CGM and a pump if you fit the criteria, so there is nothing to be gained and it almost seems like a put down because you are getting such good results which as you say you work very hard to get. I would be pretty cheesed off, if it was me.
I have an appointment coming up in December with a new consultant or a member of his team and I am half expecting some frustrations like this then. I had a good working relationship with my previous consultant who I am guessing has retired or moved on and I am really sad about that as I don't think these doctors fully understand how important consistency of approach is with a condition like diabetes and how unsettling something like this can be.

 

[mashedupmatt]

Your experiences sound very similar to mine @pawprint91 I was diagnosed aged 47 - LADA was never mentioned to me at the time, simply T1 - my honeymoon period (I hate that phrase!) ended around 6m ago and it sounds as if you are doing a fantastic job in controlling your diabetes - good that you seem to have been prescribed the right stuff (I'd avoid the Metformin if possible!) - well done, and feel free to ask any questions you may have, however trivial they may seem to you

 

[Robin]

My hospital started using the term LADA about ten years ago, then they dropped it again, because they said they didn’t find it particularly useful, so I’m just a straight Type 1 on my notes now.
I do find it irritating (and this has happened to me) when a consultant looks at my results, and comments, Ah yes, you must have some residual insulin to be getting those results…when I think it’s been down to sheer hard work. (I must add that some doctors do congratulate me on my levels).

 

[pawprint91]

I really don't see where this doctor is going with this or why he feels the need to waste NHS money on testing with a view to changing your diagnosis. It doesn't make any difference to your treatment if you are Type 1 or LADA. You need whatever insulin you need and you are still entitled to CGM and a pump if you fit the criteria, so there is nothing to be gained and it almost seems like a put down because you are getting such good results which as you say you work very hard to get. I would be pretty cheesed off, if it was me.

It was basically these feelings that prompted me to post here - I did feel a bit discredited to be honest and found it all a bit pointless! I almost hope my c-peptide test shows that I produce little to no insulin of my own just to prove him wrong Good luck with getting a new consultant - here’s hoping you get one of the good ones!

I do find it irritating (and this has happened to me) when a consultant looks at my results, and comments, Ah yes, you must have some residual insulin to be getting those results…when I think it’s been down to sheer hard work. (I must add that some doctors do congratulate me on my levels).

Absolutely- and I also have had some drs congratulate me too, including my previous consultant, which made me miss him all the more!

 

[rebrascora]

Good luck with your C-peptide test IF you decide to have it! It is your blood after all, so up to you if you have the test. Do make sure that you have the correct information to prep for the test. Usually a carb loaded test, so your pancreas is encouraged to produce as much as it can due to a BG in the teens. To be honest I would resent that in itself. Why should we deliberately push our BG above range just to do a pointless test that makes no real difference. I am so indignant on your behalf! Can you tell!! 😡

 

[CliffH]

My hospital started using the term LADA about ten years ago, then they dropped it again, because they said they didn’t find it particularly useful, so I’m just a straight Type 1 on my notes now.
I do find it irritating (and this has happened to me) when a consultant looks at my results, and comments, Ah yes, you must have some residual insulin to be getting those results…when I think it’s been down to sheer hard work. (I must add that some doctors do congratulate me on my levels).

I was diagnosed with LADA eight years ago - and that's what it's still called in my annual post-clinic letters.

 

[rebrascora]

I was diagnosed with LADA eight years ago - and that's what it's still called in my annual post-clinic letters.

But how did your diabetes present? Was it a sudden onset or was it gradual and were you managed by oral meds for months or years before needing insulin?
To me that is the real difference and in some respects it would be hard to define a cut off point where one become the other. If you manage on oral meds for a year or more but with very high HbA1c the whole time despite following a very low carb diet and oral meds or not changing your diet and eating plenty of carbs and needing insulin much sooner or having a DKA.

 

[CliffH]

But how did your diabetes present? Was it a sudden onset or was it gradual and were you managed by oral meds for months or years before needing insulin?
To me that is the real difference and in some respects it would be hard to define a cut off point where one become the other. If you manage on oral meds for a year or more but with very high HbA1c the whole time despite following a very low carb diet and oral meds or not changing your diet and eating plenty of carbs and needing insulin much sooner or having a DKA.

With hindsight it developed over about a year, although it was only picked up because my optician noticed a slight retinal bleed. As soon as I was diagnosed with LADA I was started on injecting insulin four times per day.

 

[Inka]

I was diagnosed with LADA eight years ago - and that's what it's still called in my annual post-clinic letters.

But you were a lot older than the OP. To suggest that someone of 30 has LADA is weird as far as I’m concerned - because, quite apart from the obvious Type 1 presentation - being diagnosed Type 1 as a young adult is perfectly normal.

 

[Lucyr]

I really don't see where this doctor is going with this or why he feels the need to waste NHS money on testing with a view to changing your diagnosis. It doesn't make any difference to your treatment if you are Type 1 or LADA.

I’d personally decline testing if I was already classed as T1. Funding for new technology is always T1 first and I wouldn’t want to risk some future doctor thinking I didn’t qualify as LADA not T1 and have to go through the convincing them malarkey. Or when I’m older or incapacitated in hospital someone not realising your LADA needs insulin and trying to send you back to tablets or whatever. I know LADA should be treated as T1 but I just wouldn’t believe it always is.

 

[CliffH]

But you were a lot older than the OP. To suggest that someone of 30 has LADA is weird as far as I’m concerned - because, quite apart from the obvious Type 1 presentation - being diagnosed Type 1 as a young adult is perfectly normal.

I wonder what the 'normal' minimum age is for a diagnosis of LADA - accepting that the diagnosis of LADA is itself controversial?

 

[Inka]

I wonder what the 'normal' minimum age is for a diagnosis of LADA - accepting that the diagnosis of LADA is itself controversial?

My consultant said 55 or 60 (I forget which, but I think it was 55). When she talked about it, she said some people said over 50.

 

[CliffH]

My consultant said 55 or 60 (I forget which, but I think it was 55). When she talked about it, she said some people said over 50.

Well that fits: I was 53 at diagnosis, so that makes me about 52 when the symptoms became noticeable (although only with hindsight).

 

[rebrascora]

I wonder what the 'normal' minimum age is for a diagnosis of LADA - accepting that the diagnosis of LADA is itself controversial?

Again I very much doubt there is a cut off age.
I was 55yrs old but my symptoms came on very suddenly one night after a meal out when the unquenchable thirst hit me just as I was leaving the pub to go home. I spent all night and the following fortnight drinking pint after pint of water day and night and weeing for England before I got a blood test and (Type 2) diabetes diagnosis and then 5 weeks of progressively lower carb diet down to keto level plus full dose Metformin and full dose Gliclazide and a repeat HbA1c which had increased from 114 to 116, so they started me on insulin. I didn't get Type 1 testing for another 2 months. I will never forget that night that it happened or that thirst! It was very much a watershed moment for me!

 

[Lucyr]

My consultant said 55 or 60 (I forget which, but I think it was 55). When she talked about it, she said some people said over 50.

That would make sense for why LADA wasn’t considered for me then, as even though mine developed slowly (didn’t take insulin until a year in) I was only 21 at initial diagnosis

 

[Satan’s little helper]

I wouldn’t want to (& shouldn’t.) speculate, @pawprint91 . You’re where you are now on the medication prescribed? Opinions are like the proverbial. But I will say, well done on the 90%.

 

[pawprint91]

Good luck with your C-peptide test IF you decide to have it! It is your blood after all, so up to you if you have the test. Do make sure that you have the correct information to prep for the test. Usually a carb loaded test, so your pancreas is encouraged to produce as much as it can due to a BG in the teens. To be honest I would resent that in itself. Why should we deliberately push our BG above range just to do a pointless test that makes no real difference. I am so indignant on your behalf! Can you tell!! 😡

Thank you! That’s very interesting regarding the correct info about being carb loaded … I was not given any of this info AT ALL. Just a blood form with c-peptide ticked. I have a colleague who is also T1 and she has had this test too - she follows a low carb diet so there is no way she would have had a BG in the teens, and she never mentioned this to me when we were discussing it in passing. I’m intrigued now - presumably if your BG is normal you can get a false reading?

Also, like yourself, my symptoms just appeared one day - I found myself needing the toilet desperately and almost constantly. It really felt like one day I was normal and the next I had this … then all the other symptoms arrived too!