Confused About What Type I am

Type 1 and LADA New to Type 1 Diabetes
1

Hello All,

I received my diagnosis from my GP on August 9th. My fasting BG was 317 and my A1c was 13.9. I was put on 20 units of Lantus per day. I followed up with an Endocrinologist on August 31st. He ordered a C-Pep and GAD. I received those results yesterday along with a note from the Endo. It stated that my GAD was “within range” however, the C-Pep was low (.74). The note stated that the GAD indicated that I was probably not Type I, however, because of the C-Pep results, I am insulin dependent. I do have a follow up appointment with the Endo, but I am also a little :slight_smile: impatient.

I have researched for hours here on Tudiabetes and throughout various internet sites and have only come away with more confusion. Am I a Type 2, with insulin dependence? Am I LADA?

Couple more items about me. I am 45 and not overweight. However, in the 18 months prior to diagnosis, I did lose 35 lbs (without trying of course), and would have been considered overweight, but not obese.

I know there are many, many experienced and knowledgable people on here and I would love to hear your thoughts and what I should be asking my Endo? Thanks for your replies!

2

Depends on whether you want to be academic or clinical. In the academic sense, if you are negative (or “within range”) for GAD, you are not LADA. But, clinically, if you are insulin deficient, and need insulin, and are not insulin resistant, you are not a classic Type 2, either. Welcome to the Type Weird club.

It has been my experience that academic definitions are great for studies where they need to be sure about the characteristics of the population they are studying. But in real life, you need whatever treatment you need. Doesn’t matter what type you are academically, but it DOES matter how you are getting treated. My own experience is that when they eye-balled me as a Type 2, it didn’t work (more than once), and when I had a coma last year, the CDE had to fight to get them to use Type 1 protocols, even though the Type 2 protocols were clearly not working. She then told me in no uncertain terms that for medical purposes, I am to be considered a Type 1. And she is not the first CDE to have told me that.

So, for self-protection, I call myself Type 1, but I know I am really Type Weird. Which is NOT a technical term – it’s just what I’ve been calling myself for 20 years, because I fell between the cracks. At the time, there was no antibody testing, and I no longer care. I will do what I need to do to get the insulin I need to stay alive. I already proved that I need it, and not willing to go through THAT again.

For insurance purposes, it would be better if your doc lists you as a Type 1, but I don’t know whether he would be willing to do that. As a Type 1, you can usually get more strips, and better coverage for insulin and a pump, if you should eventually decide you want one.

So I guess I’m saying be pragmatic, and do what you need to. Good luck!

3

There are three different immune antibodies commonly associated with type 1. GAD is just one of them. In a recent Johns Hopkins study nearly 50% of type 1 patients were GAD negative, so even from a clinical or academic perspective being within range does not mean you are not type 1.

4

From what I understand you would be called a T2 insulin dependent diabetic. In the end, it doesn’t really matter - try not to get too hung up on labels. What’s most important is controlling your numbers.
I find there is too much focus these days about the types. In a clinical sense, it matters only for the treatment. For the real-life aspect, it only matters about controlling your sugars to avoid complications later on.

5

Well, I was never overweight (and actually I am close to my highest weight now) but I was diagnosed as type 2 based on elevated fasting blood sugars and an A1c of 8%. It never got as bad as you. But I have followed a similar road, I was diagnosed type 2 in 2005. I tried a range of medications, mostly they didn’t work. A very low carb diet was more effective than anything I tried. I ended up being GAD negative and having a low c-peptide. So today, I am on insulin. Type 2 can present itself in many ways and we may discover in the future that Type 2 is really 18 different types. After struggling for years with a “proper” diagnosis, I decided that what really mattered was getting proper treatment. So today, I use insulin, I am on an intensive insulin regime and have brought my blood sugars down to be be well controlled. Someday, I’d still like to know what is exactly going on, but I don’t worry about whether it is holding up proper treatment, I got that.

6

GAD is only one kind of antibody and from what I understand, the antibody tests are really inaccurate/inconsistent. You sound a bit like a T1 to me, but that’s just my opinion. From what I understand, rapid weight loss is generally an indication of T1, especially when paired with a low c-peptide level. If you had waited much longer, you would have probably gone into DKA, which is commonly associated with T1 (less rarely, T2).

Unfortunately, I think there is a lot of confusion, even among docs, about how to classify certain people. If you’re diagnosed as a kid, it’s easy - you’re T1. But for people diagnosed in their 30s and 40s, there is a lot more confusion, especially when lab tests do not produce clear-cut results.

Personally, the more I read things on this website, the more I am beginning to think that, at the very least, classification should NOT be used for determining payment for treatment. I am sure that, within the next few years, how “diabetes” is classified will change yet again. When I was a kid, what I had was “juvenile diabetes.” Sometimes I was referred to as an “insulin-dependent diabetic.” Now I’m a “type 1.” It’s gonna give me an identity crisis!! Can’t we just all agree that our pancrei are screwed up and leave it at that? Would be so much easier…

7

Strongly agree that our collective pancreata are screwed up, no matter where we fall on the insulin-production/insulin-resistance spectrum. There may be classic Type 1 on one side, and classic Type 2 on the other, but there are a LOT of people who fall in the middle somewhere. If your pancreas has stopped making enough insulin for you to survive, does it matter whether you have known antibodies or whether there is something else going on that maybe they don’t know about yet?

It DOES help in treatment decisions to know what the predominant cause of your high BGs are, but getting it treated appropriately and safely is priority number one, no matter what “type” you seem to be. There is just too much variation from individual to individual for there to be hard and fast rules for ANYONE!

8

Hi Elikat: GAD is only one of the antibodies indicative of Type 1 diabetes/LADA. Often you’ll hear that LADAs only have the GAD antibody, but that is SO not true! A large percentage of LADAs are exclusively ICA positive, many have both GAD and ICA, and about 22% are IA-2 positive. So to be thorough, your doctor needs to order the full suite: glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies. You are obviously insulin deficient. See my blog on misdiagnosis of insulin-deficient diabetes. The important thing, as others point out, is to get appropriate treatment, which means intensive insulin therapy.

Sad to say, if you were a child and came to that very same doctor, he would simply have diagnosed you as having Type 1 diabetes. Doctors still diagnose strictly or mostly based on age, not etiology.

9

Thank you all for your replies! I can certainly relate to Type Weird! I will certainly follow up with my Endo regarding the other tests mentioned and as everyone has mentioned the most important thing is controlling my numbers and based on my current meter readings the Lantus, along with low carbs seems to be working. Over the past week to two weeks, I am almost always at 115 or lower, usually under a 100.