First my Endo scares me, then she confuses me

1

Hi everyone,

I feel a little sheepish posting here since whatever I have I am in the very early stages of but I thought maybe you folks could provide some insight.

Anyway, I'm 38, have a BMI of 23 and generally have been eating healthy for years, especially during the week. On weekends, when hanging out with my family I would let go some and have a Boston Cream donut from Dunkin Donuts and usually some ice cream and some OJ. For several months though, I had been getting these headaches on Monday afternoons. These were pretty debilitating. I got very tired, my legs would hurt, I could barely concentrate or sometimes even be in a well lit room. Advil had zero impact on the headache which was very strange. I noticed though that the severity lessened considerably if I cut back on the sweets over the weekend. Eventually I got myself to see an endo (I hate going to the doctor and usually go years without seeing one). We had a good talk and she thought I could be hyperglycemic so she gave me a glucose meter.

I noticed that if I had anything that was even remotely high carby, my glucose would spike. My fasting BG was 93, but it would go to the high 160's after a hot dog (with ketchup and white bread bun) or ice cream or even 100% Oat Bran (which has no sugar added and is 1/3 fiber). I even did a little trial and tested my wife after we both ate the Oat Bran. She came out at 106, I was at 168 at the same time point. Clearly something was going on and I was probably insulin resistant and pre-diabetic. I read the Atkins diabetes book, talked to a couple of friends with Type II and thought as long as I eat right everything would be fine.

Then I saw my endo just this past Tuesday who had the results of my blood test. Most of it came out great, my HDL was 62, my LDL was 100 and my Tryglycerides were 57 so clearly I dont have anything resembling metabolic disease. Then came the kicker. She said my c-peptide was very low (0.62 ng/ml) and I could be at the early stages of LADA as my pancreas was clearly not producing enough insulin. She said "I dont know if you'll start needing insulin in 6 months or 10 years but it will probably happen sooner rather than later given your c-peptide results". She then told me to test my BG every day, gave me some keto stix and a Lantus pen in case of an emergency. Let's just say that was not what I was expecting.

I knew there was something wrong but I didn't expect it to be something that I could do nothing about. Pre-diabetes for Type II, I could handle that as that can be managed by diet. Type 1/1.5? I quickly cycled from being overwhelmed to depressed to just plain scared. Luckily I found this forum which showed that nothing can't be handled. It just takes patience and practice.

So this morning my endo calls. She had taken blood a couple of days ago in the office to run some additional tests (another c-peptide, antibody tests, etc.). The non-fasting c-peptide result was a very normal 2.2. So what is a low-normal result fasting becomes a completely normal result with some food? Now I'm thinking that maybe I don't have LADA. The antibody test results won't be available for another week so I'm not going to know for sure either way until then. Could it be MODY? Some of my issues fit that but neither parent is diabetic (my grandfather is though). So now I'm more confused than anything else. Adding to the confusion is that my fasting blood sugar was 93 before I changed my diet a month ago, and now that I have cut out sugar and bread and am eating more veggies, nuts, legumes and fish, my fasting blood glucose has been 100 for two days in a row.

Any suggestions or insights would be much appreciated.

2

First off, let me just tell you, everything is going to be ok. I'm truly sorry you have diabetes, whatever the kind. But you can deal with this and your endo will help you figure out what is going on.

Often our ideas about diabetes (before diagnosis) are painted by the media and are just wrong. You could either have T1 or T2 or even MODY as you suggest. You are getting the right tests, the antibody tests and c-peptide help your endo figure out whether you are a LADA/T1. But they are not perfect and he needs to use good judgement about them. LADA/T1 can have a slow onset and you can display the same sorts of test results you have shown. But as a T2, I actually had similar results most recently show a fasting c-peptide of 0.4 ng/ml. So the antibody results will really help you get a proper diagnosis.

But in the end, being diagnosed with diabetes is just plain traumatic. Whether it is pre-diabetic, T2 or LADA/T1. But you already made some significant changes. You can handle this. I know it seems strange to say, but you and I are both lucky. We got diabetes at a time when effective treatments allow us to lead long, healthy and happy lives.

3

Thanks Brian! That really helps. We always think things are so cut and dry but often times they aren't. And you are right about being lucky. Catching things earlier on is always better than later and at least you can try to do something about it (whether it helps or not).

4

hi Maxim. glad you found us! here's a couple of good posts I would recommend you read
http://www.tudiabetes.org/profiles/blogs/positive-autoantibody-tests-indicate-type-1-autoimmune-diabetes
http://www.tudiabetes.org/profiles/blogs/melitta-s-top-ten-tips-for-the-newly-diagnosed-person-with-adult

and I would like to say "+1" on everything brian said.
let us know what's next for you.

5

Thanks for the info on c-peptide that really helps make sense of it. In the end I guess it will all come down to the antibody test.

6

Thanks for these great reference posts. I definitely need to bookmark these!

7

Yes and no. Its a great place to start but not every t1/lada tests positive for antibodies. Sometimes people get dx as t2 to later find out they are actually t1 or lada.

8

C-peptide is useful, but positive antibodies are definitive of Type 1.

People who are initially diagnosed as type 2 but later find out they are actually Type 1, have been misdiagnosed, usually due to age. LADA IS Type 1, just a slower onset form.

9

I have heard of cases where LADA was misdiagnosed because of the absence of antibodies early on. I even know one endocrinologist who watches certain "T2" patients for antibodies and low c-peptides, because he knows they probably aren't T2 even if they have no antibodies initially.

10

I've seen studies ranging from "up to 20% of people with T2 are thin, young, active, and healthy" to "T2 is a disease of obesity and never afflicts those that are thin". I've even seen it suggested that those who are thin and have T2 are really T1 but fall into the nearly 10% who never test positive for antibodies.

I fall somewhere in the middle of the spectrum in terms of beliefs. I find it very, very hard to believe it when I hear that a young, thin person is really T2. The lack of 100% reliable antibody testing and the lack of availability of testing for MODY makes me feel even more strongly.

11

Thanks for all the insight! I guess it shouldn't be too surprising that when we have millions with diabetes undiagnosed that there will be plenty of wrong diagnoses as well.

12

Surprised? No. Ashamed? Yes. This is one of the scariest things wrong with out medical system--the inability to make a correct diagnosis.