I can't believe my endo

Okay so my endo called and said that she isnot typing me as LADA but is keeping me at type 2. She just said that if you have Gad-65 you are more likely to get type 1. She also said that since my c-peptide levels were 1.42 that it was good and that most LADA have a c-peptide of .82-.95 but mine was no there. She said that since my BMI is not normal for an LADA that I am still staying as a type 2 until I have type 1 with c-peptide in the .85-.95 range. What the hell? Pardon my french.

Your still making insulin which is a good thing and look at it on the bright side. Do everything you can do to preserve what beta cells you have. If you have poor control and having problems then I would press the endo to get the medication that is needed to get your sugars under control. No matter what type you are good control is the main thing.

Diagnosis can take time too as some on this board have found out. Have you taken the battery of tests to determine if you are LADA? There are some here in the community that had higher BMI’s too so just because you carry a few extra pounds does not rule out T-1.

Good Luck.

i agree. My Gad-65 came back greater than 30 meaning they stopped counting at 30. But she said that that just means you are more likely to get type 1 not that you have it. Basically she is saying that because I make insulin I am not type1 and because I am overweight I am not LADA. So I think she is full of crap. Type 2’s do not gad-65. So here we are.

Hi Stardust: You are GAD positive, so by the Expert Committee’s definition you have Type 1 autoimmune diabetes. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus says, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of β-cells does not occur.” Here’s a long blurb from the Expert Committee’s report:

Type 1 diabetes (β-cell destruction, usually leading to absolute insulin deficiency) Immune-mediated diabetes.
This form of diabetes, previously encompassed by the terms insulin-dependent diabetes, type 1 diabetes, or juvenile-onset diabetes, results from a cellular-mediated autoimmune destruction of the β-cells of the pancreas. Markers of the immune destruction of the β-cell include islet cell autoantibodies (ICAs), autoantibodies to insulin (IAAs), autoantibodies to glutamic acid decarboxylase (GAD65), and autoantibodies to the tyrosine phosphatases IA-2 and IA-2β. One and usually more of these autoantibodies are present in 85–90% of individuals when fasting hyperglycemia is initially detected. Also, the disease has strong HLA associations, with linkage to the DQA and B genes, and it is influenced by the DRB genes. These HLA-DR/DQ alleles can be either predisposing or protective.

In this form of diabetes, the rate of β-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults). Some patients, particularly children and adolescents, may present with ketoacidosis as the first manifestation of the disease. Still others, particularly adults, may retain residual β-cell function sufficient to prevent ketoacidosis for many years. Many such individuals with this form of type 1 diabetes eventually become dependent on insulin for survival and are at risk for ketoacidosis.

I don’t know much about LADA, but I have read that a certain proportion of Type 2s and even the general population will test positive for antibodies, even if they don’t have Type 1 (though, as your endo said, they are at higher risk of developing it).

I think what makes your case tricky is that you are positive for antibodies but also still making a significant amount of insulin. I think it’s important to get to the bottom of things, though, because if you are LADA you can’t really “preserve beta cells” in the same way as you can with Type 2 (even with good control LADAs eventually become insulin dependent, from what I’ve read).

Are you insulin resistant? If you are not insulin resistant, that’s one argument you could use in favour of “not being Type 2.”

Those “Type 2” diabetics who are antibody positive are actually misdiagnosed Type 1s, according to the WHO and Expert Committee definition. It does all get complicated, because some people have very slow onset of Type 1, so still make a lot of insulin, and some adult-onset Type 1s/LADAs have some insulin resistance. It still means the person has Type 1 autoimmune diabetes, by definition, but it’s complicated!

Ah, I didn’t know that so thanks for the clarification!

I know that melitta but she is firm on the type 2 part. .I’m so mad this does not help my insurance

My two cents (never having had any of the fancy pants C-peptide or GAD-65 tests run on me, because they were not at all common or maybe even unavailable 30 or 40 years ago. Heck, I was in fact diagnosed without even a bg test!):

As long as you are getting appropriate treatment (including bg control, but also more than that, should also include eye exams, cardio risk factor reduction, etc.) it doesn’t matter what type you are.

If it comes down to, you can’t get bg test strips because you aren’t classified as T1, or you can’t get insulin treatment because you aren’t classified T1, then it’s time to step it up. Any signs of those kinds of issues?

It sounds like Stardust31 had scoped it out? I don’t recall the specifics but it’s a sort of evil thing that people who don’t understand diseases like insurance companies or media outlets act sort of “whatevercakes” about but, when you are hanging around message boards and reading about the wonders of testing a lot or CGMs or whatever and an insurer says “that’s not reasonable or customary” it would make me cranky too.

Type 2’s don’t really preserve beta cells, either. It is usually progressive, and insulin production, while high in the early stages of Type 2 fails as the years go by. I know some definitively diagnosed Type 2’s who ended up with a c-peptide of zero. If a type 2 has poor endogenous insulin production, and doesn’t take exogenous insulin, they will die of it just like a Type 1, although it usually takes a bit longer. If you read old records of diabetics before the introduction of insulin, you will see lots of people diagnosed in their 40’s and 50’s who died of diabetic coma. They didn’t distinguish DKA from HHS at the time, but dead is dead.

Well the whole thing is ridiculous. How could you even say something like that? Oh well maybe if I DKA she will say oh yeah oops. J/k BTW I just have to vent

But are you getting the treatment you need? Insulin etc?

If I were you I would get another endo. 10 years ago I was diagnosed as a type 2. (age 42 and normal weight) I went to joslin for a second opinion. I was positive for GAD 65 and was told I am LADA. I was put on a small dose of insulin to try to preserve beta cells. Try to keep your bg as close to normal as possible.

I am. I just don’t get her comments, and even when I told her that my great grandmother dad’s side had LADA, and my Great Grandfather mom’s side had Type 1, she was like well you have gad65 but it is only a sign that you "may get type 1…I’m like yeah sure thanks. I would get another endo, but she is the only one at the kaiser facility I go to. the facts are there, she just is not willing to say yes you are type 1 keep doing what you are doing.

So she is on the take then? That is more sinister.

I was under the impression that tight control helped to preserve beta cells, or at least prolong them, for Type 2s.

You are right though that some Type 2s can become insulin dependent like Type 1s. I know a guy on a mailing list who’s had Type 2 for 20 years and now produces little to no insulin (according to a c-peptide test). Unfortunately, the reason he posted about it is that his CDE told him he was now a Type 1! He didn’t think that sounded right so posted about it.

Is the doc saying she’ll cut off your insulin? Or your test strips?

You might have some hope that by running the right tests and saying the magic words invoking either “T1” or “T2” or “LADA” that something different will happen, but it won’t. You’ll have diabetes and have to work at controlling your bg regardless.

If you don’t think you’re getting enough help from the doc in controlling bg… well, many docs aren’t actually that good at regulating bg. That’s just the way it is. Today CDE’s do a lot of the educational stuff but in reality in the end it’s up to you and me to do all the actual hard work.

Umm Tim… I have had this for 6 years not new. I want the correct type so that I can get a pump and get the right fit for my life. MDI are a lot of work with 3 active kids and my life. It has nothing to do with my care, that is fine, but everything to do with my doctor learning to not stereo
type, look at facts, and make the CORRECT diagnosis. Our doctors are supposed to be our advocates, not hide behind the curtain with an incorrect diagnosis. I am about principle.

Being classed as Type 1 won’t necessarily get you a pump. If your insurance company follows Medicare guidelines, your C-peptide is too high to qualify. Regardless of what your doctor puts down as a type, if you don’t meet your insurance companies C-peptide requirements, you won’t get a pump. Not all insurance companies do that, but a lot do.