What basis were u diagnosed as Lada rather than type 2?

[Sobeit]

I would like to hear the reason endo/ diabetes nurse have given to people that they are LADA rather than type 2?I am STILL struggling with this ..
I have never been told "Yes u are 100% type 1( lada) and this is why..."

My gp registered me for a course. It was for type 2 ,but organiserof the course told me on the phone to go along as it might help me. It was nice to meet other diabetics and there was some stuff relevant to me so I thought I would get something out if it .But basically I was put off the course by the facillitator as she said it would confuse me or others or some sort of thing... This made me a little upset and bothered as I dont know where I fit in...

Im not sure also whether I am down as a type 2 ,or 1.. I was initally 'wrongly'diagnosed as type 2!That bothers me because if there were trials or cure for a type 1( I know thats not coming anytime soon...) then I wouldnt be eligible .

I think I heard mentioned that there are other antibody tests besides GAD which I showed up negative for. Can I push to get other antibody tests if they exist?

 

[tim2000s]

There is also a test for Islet Cell Antibodies (ICAs) which is different from GAD. This could potentially show up very positive for LADA.

There is also a c-peptide in response to Glucagon test that could be done. LADA reaction to glucagon is very similar to T1 not T2.

 

[Sobeit]

Thanks for your reply ! Is the first one a blood test? And do I just ask at the clinic can I get these tests?thanks

 

[Daibell]

Hi. I'm in a similar position. The problem with GAD and perhaps other anti-body tests is they become more unreliable as time elapses after diagnosis. I would ask for a c-peptide (fasting blood test). I had mine done privately as I gave up with my surgery and it showed fairly low insulin and as time has progressed I have had to increase my insulin so I assume another c-peptide would show even lower insulin. If you have a very low c-peptide you are effectively a T1 anyway whatever the cause. The exception would be a long-standing overweight T2 whose high blood sugar and excess insulin has shut down the islet cells. If you are slim with high blood sugar despite all the tablets then you are almost certainly a LADA.

 

[Diakat]

I have not been diagnosed as LADA, I am diagnosed as type 1. I use LADA because of age, 42 at diagnosis, insulin sensitivity and c-peptide. Not sure the NHS recognises LADA just 1, 2, 3, Mody.

 

[Ian DP]

I was diagnosed T2 nearly 3 years ago, and was hospitalised overnight with high BG levels. After a couple of months, reading and researching I began to believe I was more like a T1 than a T2, so I convinced my GP to do a GAD test, this came back very heavily positive (over 2000), so I was diagnosed a T1 in the honeymoon period. Not sure now if I was told I was LADA or I diagnosed it myself on here, but I do know there is no reference to LADA in my hospital notes, just T1 honeymoon.

 

[Daibell]

Hi. Yes, the NHS doesn't really recognise LADA and neither does Diabetes UK. That's fine if these guys recognise Late onset T1 i.e. T1 coming on later in life for a range of reasons including antibodies but sadly they don't always get that either but fortunately NICE now does in it's DEC 2014 T1 update.

 

[Sobeit]

As in Lada of course I mean type 1 or 1 and a half or honeymooning type 1 or whatever your having yourself !

 

[tpaz]

I was diagnosed as type 2 almost 12 years ago when I was 19. My doctor immediately assumed I was type 2, I'm not sure why. I never did regular blood tests with her. Maybe once every few years. She just kept telling me to eat better and I ignored her. I was in my 20s and thin and didn't care. I 'felt' fine, most of the time.

Last year, we moved and I had to find a new GP in my town. She's relatively young and inexperienced, so when my a1c came back somewhat high, she sent me to an endo doctor. The first time I had been to one, actually. The endocrinologist took one look at me at told me there was no way I was type 2. She sent for antibody tests and they came back positive. I have been on insulin since, and obviously much more diligent about what I eat.

It scares me to think that my original doctor would have let me carried on, never seeing a specialist, never knowing I was type 1 or LADA. I can't believe I haven't ended up in the hospital with DKA in the last 10+ years, to be honest.

 

[ljordan_ny]

I was diagnosed with pre-diabetes almost four years by my GP. A few of my siblings are Type 2, but unlike them I am/was slim, ate pretty healthy and exercised daily. I've been struggling to get my HbA1c down from 6.5 since diagnosis despite radically changing my diet and losing a little weight. I'm 5'8 and weigh 58kgs. A mutual friend suggested I get tested for LADA as she was misdiagnosed as Type 2. I went to a private doctor/lab for testing (no insurance) and my c-peptide is low (1.1) according to the range. The doctor said he thinks my diabetes is an autoimmune issue and I'm not producing enough insulin to get my sugars down, but he said I need to work with an endo. However, I tested negative for ICAs and GAD antibodies. Has anyone else experienced this? I'm guessing I am a LADA and waiting to get insurance so I can get further testing done for free.

 

[Daibell]

I was diagnosed with pre-diabetes almost four years by my GP. A few of my siblings are Type 2, but unlike them I am/was slim, ate pretty healthy and exercised daily. I've been struggling to get my HbA1c down from 6.5 since diagnosis despite radically changing my diet and losing a little weight. I'm 5'8 and weigh 58kgs. A mutual friend suggested I get tested for LADA as she was misdiagnosed as Type 2. I went to a private doctor/lab for testing (no insurance) and my c-peptide is low (1.1) according to the range. The doctor said he thinks my diabetes is an autoimmune issue and I'm not producing enough insulin to get my sugars down, but he said I need to work with an endo. However, I tested negative for ICAs and GAD antibodies. Has anyone else experienced this? I'm guessing I am a LADA and waiting to get insurance so I can get further testing done for free.

Hi. I went thru the same process and my private tests for c-peptide also showed 1.1 and my GAD was negative like yours. The UK NICE says that GAD tests become unreliable the longer you wait after diagnosis and as in previous posts there are other causes for islet cell failure such as viruses and pancreatitis. I had a mysterious high white cell count just before diagnosis of 'T2' and had a constant mild abdominal ache for a year; could these highlight something?

 

[KevinPotts]

Reading this thread I'm amazed at the number of discrepancies in diagnosis. I feel for each of you and especially the example of only getting the correct diagnosis via the lack of confidence from the young GP who referred you to the Endo.


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[ljordan_ny]

Hi. I went thru the same process and my private tests for c-peptide also showed 1.1 and my GAD was negative like yours. The UK NICE says that GAD tests become unreliable the longer you wait after diagnosis and as in previous posts there are other causes for islet cell failure such as viruses and pancreatitis. I had a mysterious high white cell count just before diagnosis of 'T2' and had a constant mild abdominal ache for a year; could these highlight something?

Thank you for the reply and it's reassuring. What's your C-peptide now and how often do you have it checked? That's good to know about the GAD tests. I'm not on any medication now because I thought I had Type 2 and could manage with diet alone, it's only been the past few weeks that I've learned about LADA. Unfortunately, I'm currently in Brasil with no insurance so can't do further testing at this time with an endo. Like you though I'm experimenting with a very low-carb high fat diet and daily fasting to get my blood sugars in the right range, but it's challenging.

 

[KevinPotts]

I'm sure I've seen info that says a greater number of patients are misdiagnosed as T2 than there are patients diagnosed as T1. It's just too easy for GPs to tell us to cut out the cakes and sweets and prescribe Metformin.

Wow...that's really quite shocking.


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[Diakat]

If you are LADA low carb still won't be enough to keep sugars in acceptable range.

 

[Daibell]

Thank you for the reply and it's reassuring. What's your C-peptide now and how often do you have it checked? That's good to know about the GAD tests. I'm not on any medication now because I thought I had Type 2 and could manage with diet alone, it's only been the past few weeks that I've learned about LADA. Unfortunately, I'm currently in Brasil with no insurance so can't do further testing at this time with an endo. Like you though I'm experimenting with a very low-carb high fat diet and daily fasting to get my blood sugars in the right range, but it's challenging.

Hi again. I've no idea what my current c-peptide is as it's an expensive test and my NHS surgery refuse to accept I'm not a T2. They assume my 'T2' has progressed to insulin (well, it's progressive isn't it?). My Basal insulin has had to be increased from 10 units/day to a current 13 over 3 years which implies my c-peptide would now be lower (honeymoon period?). If you are a LADA then normally you would need at least tablets in the early years (not just Metformin) and almost certainly insulin in the longer term unless you very seriously low-carb which would delay these for a while.

 

[tim2000s]

There's currently a research study going on looking at comparing treating early onset LADAs with either gliclazide like drugs or insulin. Have a look on the NIHR trials gateway if you are LADA and see if you fit the bill.


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[allan2010]

I would like to hear the reason endo/ diabetes nurse have given to people that they are LADA rather than type 2?I am STILL struggling with this ..
I have never been told "Yes u are 100% type 1( lada) and this is why..."

My gp registered me for a course. It was for type 2 ,but organiserof the course told me on the phone to go along as it might help me. It was nice to meet other diabetics and there was some stuff relevant to me so I thought I would get something out if it .But basically I was put off the course by the facillitator as she said it would confuse me or others or some sort of thing... This made me a little upset and bothered as I dont know where I fit in...

Im not sure also whether I am down as a type 2 ,or 1.. I was initally 'wrongly'diagnosed as type 2!That bothers me because if there were trials or cure for a type 1( I know thats not coming anytime soon...) then I wouldnt be eligible .

I think I heard mentioned that there are other antibody tests besides GAD which I showed up negative for. Can I push to get other antibody tests if they exist?

I was previously diagnosed as type 2 and sent on a "DESMOND" course. Diagnosed with LADA in January and have been on insulin since then. The consultant refers to it as "Adult onset Type 1", which is more understandable. Waiting to do the type 1 course which is called "DAPHNE".

I agree it's got to help that the prime minister has the same condition.

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[catapillar]

Is Theresa May LADA? I've never seen her referred to as LADA before, just type 1. But obviously a type 1 diagnosed over 40 (as 1/5 type 1s are - I think that stat includes type 1 & 1.5). Is there an age of type 1 diagnosis when you are LADA? I thought it was more about the length of the honeymoon - so it would be possible to be diagnosed at 25 and be LADA if you had a really long honeymoon, possibly avoiding insulin for a time, and equally it would be possible to be diagnosed at 52 and be straight up type 1 no significant honeymoon?

 

[Daibell]

Is Theresa May LADA? I've never seen her referred to as LADA before, just type 1. But obviously a type 1 diagnosed over 40 (as 1/5 type 1s are - I think that stat includes type 1 & 1.5). Is there an age of type 1 diagnosis when you are LADA? I thought it was more about the length of the honeymoon - so it would be possible to be diagnosed at 25 and be LADA if you had a really long honeymoon, possibly avoiding insulin for a time, and equally it would be possible to be diagnosed at 52 and be straight up type 1 no significant honeymoon?

Hi. To my knowledge there is no definition of LADA and as someone else has said the term doesn't exist within the medical community. Similarly there is no agreed age at which you are too old to be a T1 (is it 5 years old, 10 yrs old etc?). I would prefer the term LADA not to be used as not all Late onset T1s are due to antibodies. The term Late onset T1 covers a range of causes and timescales but implies the same outcome as an early age T1. No one can easily measure the honeymoon period and I bet even children have a honeymoon period but it may be months rather than years.