LADA NHS update treatment

tonyme

New Member
Relationship to Diabetes
Type 1.5 LADA
Does anyone know any updates on the whole LADA treatment issue - basically it’s not a recognised different form (at least from an NHS perspective) and there is no agreed treatment path. The general recommendation is to start insulin treatment as early as possible (which I have), but without an official pathway, there is a lot of variation in what the NHS covers and what they don’t (most notably - only sensors are covered for type 1). Any dates even when decisions are planned..?
 
I share your concern. Note that you can get CGM sensors when on insulin regardless of type and I have one prescribed. LADA eventually reaches the same state as T1 and should be treated as such. I'm not expecting any change in the medical world position until they stop referring to T1 as an 'auto-immune' condition when the majority are diagnosed later in life and thru causes such as viruses. Push to be referred to a diabetes consultant if you can.
 
Does anyone know any updates on the whole LADA treatment issue - basically it’s not a recognised different form (at least from an NHS perspective) and there is no agreed treatment path. The general recommendation is to start insulin treatment as early as possible (which I have), but without an official pathway, there is a lot of variation in what the NHS covers and what they don’t (most notably - only sensors are covered for type 1). Any dates even when decisions are planned..?
I am confused. My understanding is that LADA is a variant of Type 1 and there are clear paths for Type 1. So what are you expecting to get different?
Incidentally, many doctors do not use the term LADA because it is not clearly defined and is ambiguous.
Apart from raising awareness that Type 1 can be diagnosed as an adult, I have not seen any benefit (once diagnosed) in using the term.

I write this as someone who was diagnosed with Type 1 as an adult.
 
I share your concern. Note that you can get CGM sensors when on insulin regardless of type and I have one prescribed. LADA eventually reaches the same state as T1 and should be treated as such. I'm not expecting any change in the medical world position until they stop referring to T1 as an 'auto-immune' condition when the majority are diagnosed later in life and thru causes such as viruses. Push to be referred to a diabetes consultant if you can.
But LADA is also an autoimmune condition, it is just a slow onset variant of Type 1 that exhibits in more mature adults.

@tonyme Welcome to the forum.
Can you tell us a bit about how your diagnosis came about and how long you have been diagnosed and which insulin(s) you are using?
What tests, if any, have you had to diagnose you as LADA?
Are you being treated by a specialist diabetes clinic at a hospital or just at your GP surgery?
Are you having difficulty being prescribed sensors?

As said, LADA is just Type 1 that has a slower onset in adults, so you should be treated as a Type 1 and have access to the same support and technology. .
 
Welcome @tonyme 🙂 My consultant rarely uses the term LADA. It’s a slow-onset form of Type 1 and yes, it’s generally thought that early introduction of insulin is best, so it sounds like you’re getting the right treatment. As LADA comes under Type 1, you should be able to access the usual Type 1 stuff (well, as much as any Type 1 can as many don’t have things like pumps).
 
Does anyone know any updates on the whole LADA treatment issue - basically it’s not a recognised different form (at least from an NHS perspective) and there is no agreed treatment path. The general recommendation is to start insulin treatment as early as possible (which I have), but without an official pathway, there is a lot of variation in what the NHS covers and what they don’t (most notably - only sensors are covered for type 1). Any dates even when decisions are planned..?
Welcome to the forum.

There is no difference in the treatment for LADA and Type1 as they are basically the same autoimune disease. With LADA it just progresses more slowly as we are older when diagnosed. My consultant just refers to it as Type 1. At the start you are likely to have a few beta cells left, and once you are in insulin they may be working again for a while. This is known as the Honeymoon period. They may have talked to you about this. Whether diagnosed as an adult or as a child we have access to a lot of modern tech such as sensors, and in some cases pumps.

Come back with any questions.
 
Well seems like it’s down to the consultant/trust then - in my area they say I only get sensors if I’m type 1 and they wanted to treat me with drugs not insulin - I chose the latter based on the research that is out there…
 
Well seems like it’s down to the consultant/trust then - in my area they say I only get sensors if I’m type 1 and they wanted to treat me with drugs not insulin - I chose the latter based on the research that is out there…
If you had chosen meds you would have eventually ended up on insulin. Starting straight on insulin is recommended in order to protect the remaining beta cells that you have.

It feels like they are using the Type 1.5 not being given sensors as a way of reducing their costs. I would definitely challenge this. Our later diagnosis Makes no difference it just takes time to get going to full blown Type 1 and throws up some oddities on route.

If you wanted to you could get a free trial of the Libre. You could use this in order to get more confident with your management.
 
Well seems like it’s down to the consultant/trust then - in my area they say I only get sensors if I’m type 1 and they wanted to treat me with drugs not insulin - I chose the latter based on the research that is out there…

How frustrating for you @tonyme

Latent Autoimmune Diabetes in Adults should be treated as a version of T1 according to the clinicians /professors who put together the “T1 in Adults” NICE Guideline in 2015.

I hope you are able to access the care you need before long, and without too many hoops to jump through!
 
Does anyone know any updates on the whole LADA treatment issue - basically it’s not a recognised different form (at least from an NHS perspective) and there is no agreed treatment path. The general recommendation is to start insulin treatment as early as possible (which I have), but without an official pathway, there is a lot of variation in what the NHS covers and what they don’t (most notably - only sensors are covered for type 1). Any dates even when decisions are planned..?
I'm very sorry to hear this. It may not be of much help to you but when I moved to Scotland in 2019 I was on the waiting list in England for a sensor: I have LADA. As soon as I saw the Consultant in Scotland and asked how long the waiting list for sensors is in Scotland, he laughed and said, "When you leave here today you'll have sensors". He then went to a cupboard and handed me a supply. He had some very scathing things to say about diabetes care in England compared with Scotland :(
 
But LADA is also an autoimmune condition, it is just a slow onset variant of Type 1 that exhibits in more mature adults.

@tonyme Welcome to the forum.
Can you tell us a bit about how your diagnosis came about and how long you have been diagnosed and which insulin(s) you are using?
What tests, if any, have you had to diagnose you as LADA?
Are you being treated by a specialist diabetes clinic at a hospital or just at your GP surgery?
Are you having difficulty being prescribed sensors?

As said, LADA is just Type 1 that has a slower onset in adults, so you should be treated as a Type 1 and have access to the same support and technology. .
Hi. I have never come across any medical evidence that T1 in adulthood is due to autoimmunity. Do you have any research references? I believe it may be just groupthink which the medical world is very good at. I believe my onset for various reasons was due to a virus and hence not autoimmunity.
 
Type 1 is an auto-immune condition. Often adults are assumed to be Type 2, then antibody tests show they’re actually Type 1. Auto-immunity is the cause of Type 1. You have LADA in your diabetes type: Latent Autoimmune Diabetes of Adulthood.

A virus is often the final straw that breaks the camel’s back, but the autoimmune attack will have been going on for some time prior to that.
 
Hi. I have never come across any medical evidence that T1 in adulthood is due to autoimmunity. Do you have any research references? I believe it may be just groupthink which the medical world is very good at. I believe my onset for various reasons was due to a virus and hence not autoimmunity.
Have I been confused all these years? I thought that a positive GAD antibody test meant that you were producing antibodies, and that meant there was an autoimmune attack going on. Why do they show up, otherwise? That positive test was certainly taken as confirmation of my Type 1 diagnosis, at the age of 50.
 
More than that, having one autoimmune condition (Type 1 diabetes) puts you at risk of others. My consultant screens her Type 1 patients for autoimmune thyroid problems and coeliac disease - because they, like Type 1, are autoimmune.
 
Its autoimmune, which is why diabetes research is focused on implanting beta cells in such a way as they are hidden from the immune system.
And why auto antibodies are checked for.
And why diabetes often goes with other autoimmune conditions.
 
Hi. I have never come across any medical evidence that T1 in adulthood is due to autoimmunity. Do you have any research references? I believe it may be just groupthink which the medical world is very good at. I believe my onset for various reasons was due to a virus and hence not autoimmunity.
Another illness or stress often triggers the diagnosis of T1/LADA and the test for antibodies is frequently used to confirm the presence of the antibodies, along with a c-peptide test which measures the amount of insulin your pancreas is producing which will decrease as more beta cells are destroyed.

How do you think your diabetes was caused?
 
Hi. I have never come across any medical evidence that T1 in adulthood is due to autoimmunity. Do you have any research references? I believe it may be just groupthink which the medical world is very good at. I believe my onset for various reasons was due to a virus and hence not autoimmunity.

You might find this interesting @DaveB


It cropped up in another recent thread discussing the sometimes confusing and variable use of the term.

Incidentally, the first ‘A’ in LADA refers to Autoimmune, so I think an Autoimmune nature to your diabetes is likely - though the autoimmune attack can be triggered following a viral infection
 
I was diagnosed with T1 2 years ago (I am 49) - there was no talk of LADA or any other variant - Doc said I can't be T2 due to weight (I'd lost loads in no time) and how active I am, so immediately requested antibody bloods which obviously came back positive (IA I think plus another- correct me if I'm wrong) - I was sent to hospital next day and was on (and obviously still am!) insulin therapy ever since - as the honeymoon period has progressed and is certainly ending I have doubled my insulin intake (over the last 6 months) - I was with someone on my DAFNE course earlier this year who was diagnosed as LADA (which is reported to be slow-onset) who was taking 5 times the amount of insulin as I am now (even having doubled mine) - LADA is basically type 1 but discovered later and triggered by something
 
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Well in August 1972 I was told that my T1 was most likely brought on by the unidentified gastric virus I'd had in the February of that year. Identified by my GP on the Tuesday after work, whilst I was supplying a urine sample for the nurse and she was testing it for glucose content he rang the hospital and told them he was sending me there tomorrow morning which he did and that's where I stayed for the next 10 days - no idea what tests they did to confirm his thoughts cos they didn't tell you that sort of thing in those days - but I do know that an hour after my very first insulin jab I did actually start to feel different and when I considered the feeling - better than I had for months. Just had to get used to all the kit palaver and differences - including getting my eyes to focus properly again until which I couldn't go back to work since I was a clerk - all handwritten in those days, much of which was sent to the typing pool! Not everything that's happened since then - is a bad thing!

Anyway - a virus has been believed to 'bring on' the auto immune attack on Beta cells for at the very least, the last 52-ish years. (Cos the virus causes the body to mount its immune attack and some of its army goes off on a jolly to different parts of the body than the actual bit they're supposed to be attacking. Oh bugger!)
 
Well in August 1972 I was told that my T1 was most likely brought on by the unidentified gastric virus I'd had in the February of that year. Identified by my GP on the Tuesday after work, whilst I was supplying a urine sample for the nurse and she was testing it for glucose content he rang the hospital and told them he was sending me there tomorrow morning which he did and that's where I stayed for the next 10 days - no idea what tests they did to confirm his thoughts cos they didn't tell you that sort of thing in those days - but I do know that an hour after my very first insulin jab I did actually start to feel different and when I considered the feeling - better than I had for months. Just had to get used to all the kit palaver and differences - including getting my eyes to focus properly again until which I couldn't go back to work since I was a clerk - all handwritten in those days, much of which was sent to the typing pool! Not everything that's happened since then - is a bad thing!

Anyway - a virus has been believed to 'bring on' the auto immune attack on Beta cells for at the very least, the last 52-ish years. (Cos the virus causes the body to mount its immune attack and some of its army goes off on a jolly to different parts of the body than the actual bit they're supposed to be attacking. Oh bugger!)
I guess my main gripe is that it is assumed that a T1 condition IS auto-immunity whereas we have both found that ours was caused by a virus. Why assume that a viral attack causes an auto-immune response? Many diseases are caused by viruses. My wife has suffered attacks from the EBV virus since a kidney transplant (it came with it) but no one has described it as an autoimmune response despite EBV antibodies being present; same for many cancers. I agree that where there are antibodies you can claim autoimmunity but the current situation is absurd where people like me are classified as T2 because we don't have antibodies yet have all the symptoms and treatment as a T1. My C-Peptide when last measured was just above the T1 limit so what am I? There are many others like myself. I've agreed with my diabetes consultant that I'm listed as 'Insulin Dependent' but with no type. My surgery GP lists me as T2. I've been refused DAFNE as I'm not T1. It's a mess. I define myself as 'Last onset T1' which I believe fits.
 
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