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

Daibell said:

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.

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What exactly does the phrase "honeymoon period" mean? Is that when Type 1s still produce insulin? Has anyone tried Dr. Bernstein's Diabetes Solution diet and has success in preserving pancreatic function? Are there any side effects to taking insulin, if so what has been other T1s experiences? I don't like the idea of taking meds, but I guess it will get to the point where it's inevitable.

Side effects of insulin can include death of you take too much, but then diabetes also causes death...
I am very happy to have been given insulin, it has made me feel so much better. Yes I still watch what I eat most of the time but insulin has given me my energy back and the freedom to have a carb blow out occasionally and has saved my life. I'm glad to be alive and around for my family.

Sobeit said:

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?

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I was hospitalized for a short while when I was 24 for an issue unrelated to diabetes. I tested pre-diabetes back then in a routine check-up, but it was assumed because I'm overweight, told to 'watch what I eat' and that was that. When I was 26 I finally got my act together and saw my doctor, who had me tested and labeled as a type 2. I saw the diabetes practitioner in my doctor's office and she went through my situation and said that even though I'm overweight, it wasn't severe enough to be the cause of T2, nor was I really old enough overall for it.

She knew about LADA and had me tested. I can't tell you which test it was by name, but it was for diabetes antibodies and I tested positive. Although she referred to it as LADA herself, she does keep saying that I'm "between T1 and T2", which I guess makes sense overall.

I got started on metformin. That didn't help by itself, so I was given glicladize as well. It went well for about 1.5 years, although I maxed out on the metformin dosage, and then the past 6 months my BG values were all over the place. Now I'm 28 and dealing with a failing of my beta cells altogether. After 12 hours of fasting, I tested 8.2. I biked 15 minutes to my doctor's office (still fasting), got my A1C bloodwork done, biked 15 minutes back home and I tested 9.8 (still fasting) - no hypo occurred to explain the sudden rise in BG. My A1C refused to lower. I had random hypos that made me have to eat, while other times I had random hypers for no discernible reason. Diet and medication didn't influence my values like they should have.

We expected this to happen. LADA is a fickle mistress and I knew that I could have 6 months or 6-10 years, depending on how my body behaved and reacted. As of this week I've started insulin in combination with my oral meds. (Basal only, Toujeo, 10 units a day.) We're hoping that this will be enough for now to get the out of whack curve under control, but if we don't see improvement in this over the next couple of weeks we're adding bolus as well.

Sometimes it's really hard to get people to understand what type you are. I've talked to many doctors, nurses and pharmacists who all never heard of LADA/1.5. They understand that it's "a slow form of type 1 in adults", but many don't believe it either because "only children can have type 1". I'm also still overweight, which makes people insist I can't have some form of T1.

What convinced me the most was that even when I was doing everything right for a T2 treatment, it wasn't giving me the expected results in the long run. I spent 2 years mucking around with medication, adjusting it, dealing with inexplicable BG behaviors and a lot of exhaustion. I've come to understand that this is part of what LADA is. It's a slow process that drags on and isn't fixed with just meds and diet and exercise. It's something that is out of your control and you will eventually need to use insulin even when you've done everything right and by the book. I think those are the key factors in differentiating between T1, T2 and LADA.

Even if you can't get an 'official diagnosis' on this, if you recognize some or most of what I wrote, trust your own gut feelings and bring it up with your doctor. Be assertive about it. It's your body, your condition and your life. You have a say in it!

I was wondering how a diabetic nurse can tell after 1 lot of blood tests that I was Lada my original hsbc1 was 66 and glucose intolerance test 11.9 around. I really don't understand ?


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Pollyg3 said:

I was wondering how a diabetic nurse can tell after 1 lot of blood tests that I was Lada my original hsbc1 was 66 and glucose intolerance test 11.9 around. I really don't understand ?


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It depends what the tests were.

HbA1c and glucose tolerance tests don't tell you what type of diabetes you have, just how well you are managing it.

Tests to determine the type of diabetes include tests to see if you have antibodies associated with type 1 (GAD) and cpeptide test to see if you are making any of your own insulin.

It doesn't make sense to me that diagnosis is related to age. I think there's still a lot of hangover from the days when children were diagnosed with "juvenile" and adults with "adult-onset" diabetes, and these were then changed to "type 1" and "type 2". So there's a kind of folk memory among doctors that makes them relate diabetes type to age of onset. This would be ludicrous in most other diseases: if you get cancer then it's cancer, even if you're an OAP and it's a kind of cancer most prevalent among teenagers: nobody feels the need to come up with a special term such a "late onset juvenile cancer."

Yet all these age restrictions get imposed on diabetes. LADA is usually diagnosed if you are aged 25 or above at diagnosis. Why? If it's a separate type from T1, characterised by a longer honeymoon period, then this should be the diagnostic criterion, not your age. If it's the same as T1 in all but name, why not just call it T1 regardless of age?

This age criterion affects MODY too: even this website http://www.diabetes.co.uk/diabetes_mody.html tells us that MODY "is a form of diabetes that develops before the patient reaches 25." Yet one kind of MODY, caused by an IPF1 gene mutation, has an average age of onset of 35. And since it's genetic, surely the gene mutation is present from birth, so why characterise the disease by reference to the maturity of those who have it? (To be fair, diabetologists now prefer "monogenic diabetes" as a term and discourage "MODY".)

I should add that I don't have MODY: there isn't an option on this board for "mitochondrial", so I picked MODY as being closest to what I do have!

Kate

kesun said:

It doesn't make sense to me that diagnosis is related to age. I think there's still a lot of hangover from the days when children were diagnosed with "juvenile" and adults with "adult-onset" diabetes, and these were then changed to "type 1" and "type 2". So there's a kind of folk memory among doctors that makes them relate diabetes type to age of onset. This would be ludicrous in most other diseases: if you get cancer then it's cancer, even if you're an OAP and it's a kind of cancer most prevalent among teenagers: nobody feels the need to come up with a special term such a "late onset juvenile cancer."

Yet all these age restrictions get imposed on diabetes. LADA is usually diagnosed if you are aged 25 or above at diagnosis. Why? If it's a separate type from T1, characterised by a longer honeymoon period, then this should be the diagnostic criterion, not your age. If it's the same as T1 in all but name, why not just call it T1 regardless of age?

This age criterion affects MODY too: even this website http://www.diabetes.co.uk/diabetes_mody.html tells us that MODY "is a form of diabetes that develops before the patient reaches 25." Yet one kind of MODY, caused by an IPF1 gene mutation, has an average age of onset of 35. And since it's genetic, surely the gene mutation is present from birth, so why characterise the disease by reference to the maturity of those who have it? (To be fair, diabetologists now prefer "monogenic diabetes" as a term and discourage "MODY".)

I should add that I don't have MODY: there isn't an option on this board for "mitochondrial", so I picked MODY as being closest to what I do have!

Kate

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I only realised that MODY stands for Mature Onset Diabetes of Youth yesterday - I had always assumed that the acronym was some combination of genetic words beyond my grasp, like maybe monogenic, maybe mitochondria (you know, i hear a word, i thought a thing, I didn't check if I was right of not)... But what it actually stands for strikes me as just, well, a bit daft!

kesun said:

It doesn't make sense to me that diagnosis is related to age. I think there's still a lot of hangover from the days when children were diagnosed with "juvenile" and adults with "adult-onset" diabetes, and these were then changed to "type 1" and "type 2". So there's a kind of folk memory among doctors that makes them relate diabetes type to age of onset. This would be ludicrous in most other diseases: if you get cancer then it's cancer, even if you're an OAP and it's a kind of cancer most prevalent among teenagers: nobody feels the need to come up with a special term such a "late onset juvenile cancer."

Yet all these age restrictions get imposed on diabetes. LADA is usually diagnosed if you are aged 25 or above at diagnosis. Why? If it's a separate type from T1, characterised by a longer honeymoon period, then this should be the diagnostic criterion, not your age. If it's the same as T1 in all but name, why not just call it T1 regardless of age?

This age criterion affects MODY too: even this website http://www.diabetes.co.uk/diabetes_mody.html tells us that MODY "is a form of diabetes that develops before the patient reaches 25." Yet one kind of MODY, caused by an IPF1 gene mutation, has an average age of onset of 35. And since it's genetic, surely the gene mutation is present from birth, so why characterise the disease by reference to the maturity of those who have it? (To be fair, diabetologists now prefer "monogenic diabetes" as a term and discourage "MODY".)

I should add that I don't have MODY: there isn't an option on this board for "mitochondrial", so I picked MODY as being closest to what I do have!

Kate

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I completely agree. The current T1 and T2 definitions are just plain silly. Any differentiation should be based on the body's insulin production as the treatments then differ i.e. they are effectively different medical conditions. The c-peptide test can show this. If you have low natural insulin to need insulin injections then you are T1 - end of. Any sub-definition such as LADA or a T2 mis-diagnosis are merely distractions. I use the term Late onset T1 to indicate that I'm not a T2 with insulin resistance. Even T2s who have pancreatic damage thru long-term high blood sugar may have low natural insulin and hence are effectively now T1 as insulin is needed; how they got there is not relevant to the treatment now needed.

"I was initally 'wrongly'diagnosed as type 2!" ---> Me, too! But my endo told me that whether or not I took a test to prove I have LADA or I'm a Type 1, our management will still be the same, ergo insulin. I was also confused by this because my first GP told me I am Type 1, saying that since I don't know about my condition until I was 18. Now, when people ask me if what type I have, I don't know whether to say 1.5 or 1. But, who cares..they don't know the difference anyway and it's so tiring to always explain to them repeatedly.