Comment

Comment by meee on December 3, 2012 at 12:28am

Natalie, I agree, it isn't going to happen in our lifetimes for sure, maybe we can hope more knowledge will come though at least... I remember asking one of my endos in the hospital what caused this and they said a virus most likely, which I had last October. I asked what if I test negative for the antibodies, what would he say and he said they would still say I was type 1 etc. because of going into DKA the way I did, the high bg, the weight loss and the insulin deficiency... I'm glad that metformin can help us also if we need it... I took metformin for one day when I was in DKA and it did lower me from 279 to 200 temporarily, so it can help lower you at any time since it will act on your liver. I also started a low carb diet immediately...

Comment by meee on December 3, 2012 at 12:15am

Sheila, I guess it could be I had a long onset too, I will never know now probably... my bg test in October was a non fasting and it was 106. It was higher than the previous one I had done which was in the 90's I think... also non fasting.. and I noticed that my co2 and potassium were already low in October also. Prolly already a sign that something was up... I'm glad you had a good endo and who tested you.. I wish I had known about my D before hand so I could have altered to a much lower carb diet etc. and avoided DKA. To be honest before the really high bg and DKA I prolly would not have believed it either, but as far as I know gad is the only antibody I tested positive for. No one in my family has D that I know of but my grandfather had RA and Graves disease.

Comment by Sheila Fitz on December 2, 2012 at 8:44am

Meee, I am pointing out another misconception. You can have a normal fasting glucose and still be an early LADA. I continue to have a normal fasting blood glucose nearly three years after the GAD and C-Peptide test. I still make a little insulin to cover what I eat and don't burn off. I've also had normal glucose tolerance tests - four of them the year my LADA was confirmed.(because they were checking my growth hormone) I suspected Celiac disease was in my family and had a genetic test that showed I carried the DQ2 gene linked to Type 1. I do not have Celiac, myself. However, the gene and my insistence that I was LADA were the only reasons my Endo tested me. At one visit, I even told him that I didn't believe him that I wasn't diabetic (because of a normal fasting blood glucose), and I intended to go low carb anyway. Before the testing, he did not think I was LADA because he said that he sees LADAs in the ER with bg of 700. This is a very good Endo who came from Joslin. I was lucky. He did test me for whatever reason. BTW, the first few months, he hovered waiting for me to crash, but I'm still hanging on three years later. I've read that LADA can have a very long onset. I have to thank all my Celiac friends for my awareness. Truthfully, my pursuit of Celiac information was for my children and grandchildren, but I'm the one it helped the most.

Comment by Natalie ._c- on December 1, 2012 at 10:17pm

meee, I should explain what I meant: when I said having T1 doesn't protect from getting T2, I meant that T1s, even those diagnosed in DKA, can still become obese, develop insulin resistance and metabolic syndrome, all hallmarks of T2. It DOESN'T mean they can go off insulin, because their pancreases are still kaput, but T2 drugs such as Metformin can help with insulin resistance and decrease their daily insulin dose. They are not CALLED T2's because they remain totally insulin dependent, but they have the characteristics of both types of diabetes. Which is why some people call them "double diabetics".

On the other hand, T2's who develop the need for insulin do NOT become T1's because the etiology of their disease is different. It IS theoretically possible for someone who already has T2 to develop antibodies, and actually become T1, but I have never heard of it happening.

So what I am trying to say is that the two forms of diabetes have different etiologies, but they are not mutually exclusive.

And just to confuse you further, T2 is actually a garbage-can diagnosis, comprising every adult who is antibody negative -- some people are thin, but antibody negative, so don't, by definition, fit into the LADA category. There is yet a lot to be learned about non-classical diabetes, and it probably won't happen in MY lifetime!

Comment by Ruth on December 1, 2012 at 9:41pm

It tooks several years of increasingly high blood sugars and A1Cs after being incorrectly diagnosed as a Type 2, and multiple visits to quite a number of endocrineologists, before I found one that really listened to me and therefore had me tested. The general response to my request for help getting my blood sugar where it should be was to tell me to be more careful about what I ate, or to consider getting some exercise (ignoring my notebooks full of notes about how many (actually few) carbs I was eating and all my hours of exercise (usually around 3 hours/day)). So basically the general assumption was that I wasn't even trying to do what I should to take care of my diabetes instead of believing me and trying to figure out what the real problem was. I have met a couple of other LADAs and they had pretty much the same story. So, in my opinion, there are probably more LADAs out there then he thinks because they still haven't been correctly diagnosed.

Comment by Melitta on December 1, 2012 at 8:55pm

Meee: According to Jerry Palmer MD, who does considerable research on adult-onset Type 1/LADA, adult-onset Type 1 is about 2 to 3 times more common than childhood onset Type 1. John Walsh, author of Pumping Insulin, says that about 5-10% of ALL diabetes is classic childhood onset Type 1, about 10-15% of ALL diabetes is adult-onset Type 1. Adult-onset Type 1 is far more common than childhood-onset Type 1, but it very often is misdiagnosed as Type 2 diabetes strictly because of age of onset not etiology.

Comment by Zoe on December 1, 2012 at 8:37pm

I agree with you meee; you can't both have antibodies and not have them. Running out of beta cells and needing insulin does not make a Type 2 a Type 1, and developing insulin resistance doesn't change a type 1 to a type 2. They are too different conditions.

Comment by meee on December 1, 2012 at 7:45pm

"Having T1 in NO way protects you from T2."

Is it really possible to have both types or is that eventually type 2 runs out of overtaxed beta cells and type 1 becomes insulin resistant for whatever reasons?

Diabetes really is very complex when you start to research it. I call mine late onset type 1, I noticed my endo classified it as type 1 controlled in my diagnosis, since I had the gad antibodies and I went quickly into high bg and then DKA.

Although who really knows for how long we are having the bg issues before everything really goes to hell. I had mild hypoglycemia 10 years or so before this, but I really feel I've had it all my life as I have always had to snack on small frequent meals. My endo thought this was going on for at least two years most likely but my bg was normal 6 months before my DKA experience. Someone bought me a huge box of chocolates 2 months before all the symptoms started and I think that was one of the things that blew out my pancreas to DKA!

My first diagnosis was type 1.5 and type 2, 3 days later I was in the ICU- I was already in DKA on the day of the diagnosis.

That was the main fault with the diagnosis,that I was in an emergency situation. I think the fact that I was late onset type 1 would have been quickly discovered in my case as my doctor did c peptide and antibody tests and wanted me to come back to see if I needed insulin.

Anyway I definitely did need insulin and I survived it all somehow. I think it is important to know what you need for your treatment and demand that if you need to be in the hospital, especially since there seems to be so much confusion among the medical profession about how to treat diabetes- we really need to be in control of that as much as possible.

That was a question I have also, how many late onset type 1 / lada are there, are there statistics on this vs juvenile type 1?

Comment by Zoe on December 1, 2012 at 5:44pm

Good points, David. I think for some of us the "label" matters more than others (for various reasons) but, yes, what matters is that we get the treatment we need!

Comment by Zoe on December 1, 2012 at 5:34pm

I think there are probably plenty more LADA's than are in this group, either because they are misdiagnosed, just identify as Type 1, or just don't have time for groups..lol. I, like Natalie, just identify as Type 1. I'm concerned with correct identification of LADA, because I, like many of you was a victim of the "all adults are Type 2" mentality. But at this point in my life, the onset of my Diabetes (latent) is less important than the management which is the same as any other type 1. (with, as we all agree, individual variations) I too just say Type 1 and only bring out the "LADA" if someone is really interested or like my cardiologist, he said "so you were diagnosed as a child?" and the answer mattered for his assessment of risk factors. I started a Type 1 women's group which was a very varied bunch of childhood onset, and adult onset both in DKA and slow onset. We all had so much in common.

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