I'm relatively new here. Just a few weeks ago my endo told me she thought I might have LADA (due to glucose intolerance and a relatively low c-peptide score of 0.6) and even gave me some insulin to keep just in case.
Let's just say that freaked me out some. I read How to Think Like a Pancreas and was getting ready for a life with insulin being a major part of it. I did hold out some hope though that her thinking was wrong and maybe I don't have LADA. Well today I finally got the antibody tests back and I'm negative for GAD-65, insulin autoantibodies and ICA512 etc. Thank god. I'm much happier with the idea that maybe I can manage everything without insulin.
But that doesn't really answer the question of what I actually have? I don't really have the signs of Type II as I am thin, have no signs of metabolic issues and have low c-peptide levels, not high. And this test shows I don't have Type I or LADA either. And it's not like everything is fine. My bg shouldn't be going to the high 160's after having some non-sugar added oat bran or a hot dog. Heck my bg goes to the upper end of normal if I just eat chicken and legumes.
It could always be MODY but neither of my parents have ever had sugar issues. So I'm perplexed. Any ideas? The endo basically told me to check my sugars every few days and come in for another set of labs in a few months. Nothing else to do than that I guess (other than continue with my low carb diet and working out).
Antibody tests can produce false negatives, especially in the very early stages of LADA. If I had to bet, I would bet that you're LADA and that you will need insulin eventually and perhaps you'll need it fairly soon.
While thinking like a pancreas can really take a lot of time, insulin is the best drug for treating diabetes over the long run. The effects and side effects are well known which means that you aren't dependent on medical staff to adjust your medication and it can provide you with near normal blood sugar while helping to preserve remaining basal cells. Many of the oral medications increase your insulin production and burn out your remaining cells.
Melitta has posted that there are now endos who immediately start their thin T2s on at least basal insulin to avoid some of the problems (including complications) that result from misdiagnosis.
I would begin regular testing before and 2 hours after meals in addition to when you wake up. If you don't want to test 6-7 times a day, you can rotate and test before and after at least one meal each day. Information is your most important resource at this stage and testing every couple of days isn't going to provide it.
I'm sorry you haven't got a clear diagnosis. From what I understand 10-15% of T1s don't test positive for antibodies. But that doesn't mean you are not a T1, we still depend on the competent judgement of our doctors for a proper diagnosis. And there is even a name for this. My endo actually suggested to me that perhaps that is my diagnosis. It is called "Idipoathic Diabetes," sometimes called Type 1b. In the end, the diagnosis is just a label and none of us is a label, we are individuals. And what really matters is that you get proper treatment.
There could be a false negative as shah said or it could be you're type1/lada and haven't produced antibodies yet. It's good she is going to retest and that she gave you insulin. You should get the mody test too. Did she say how she thinks is the best way to treat your high bg? Insulin is usually the best way to preserve beta cells and prevent dka.I would check a few times a day for a couple of weeks at least until you have a clear picture of what is happening: fasting, before each meal, 2 hours after each meal, before bed and anytime you feel something changed. If you're type 1 maybe you can get into a program to help prevent its full onset.
Thanks Maurie! Ill look up what Melitta has posted in the past. And I will definitely continue testing. I already have a baseline for most of my usual meals so I will be able to tell if there is any increase.
I love that name "idiopathic diabetes". That is just doctor talk for miscellaneous diabetes. I will definitely do research on that. I do understand we aren't labels but that would just make a way forward clearer. Oh well. Ill keep testing and seeing where it all goes.
Unfortunately she didnt really offer any advice on the spikes. But she also knows that I have gone low carb and am working out and am taking supplements thought to improve bg control (chromium, magnesium, alpha lipoic and cinnamon). My fasting bg is usually 86-101 these days in the morning so wouldn't basal insulin make me too hypo?
I remember you said that you had another c-peptide--2.2 or something like that--after eating. What was your BG at that time? I'm sorry if you said it, but I don't remember.
I'm betting you're LADA and have either caught it too early to test positive or won't test positive. I know an endocrinologist who doesn't treat "thin type 2", he treats LADA. His belief is that there's no such thing as a thin type 2. I'm not entirely sure that I disagree with him.
That being said, I've read in several places that MODY can be so mild as to escape undiagnosed. That means that a parent might've had it, but their A1c was never elevated enough to show anything and they never had enough symptoms to complain. One article I read specifically stressed that the exact same mutation from parent to child can cause massively different degrees of disease.
Good memory Guitarnut! My 2.2 was a non-fasting c-peptide taken about an hour or two after food (though that was just some nuts I snacked on before I got to the doctor). My BG at that time was 94. My fasting c-peptide was 0.62 at a BG of 93.
And you might be right on the MODY. If I didn't have a headache and suspected a blood sugar issue, I never would have known about my blood sugar spikes post food. My hba1c has been consistently normal. So maybe they have a mild form or something. Or I have a mutation. Or I have LADA. That's why I'm sticking with the program and not taking anything for granted!
you're welcome :) I'm not sure if basal would work for you or if just fast acting for the spikes would be best- there are some members here who are newly type 1 and honeymooning, who take a small basal dose and no bolus I think. It's very different for each person. I'm taking alpha lipoic acid and cinnamon also and I seem to be having hypos a lot, not sure if that is why yet. That is a great fasting range! right now your non fasting c peptide seems ok. I would guess you are type 1 late onset and it has been caught very early, which is great.
I’m going to see a new endo on Monday just to see what he says. I like my current endo but it never hurts to get a second opinion especially from someone who’s published and works at one of the top hospitals in the country (New York Presbyterian).
If I hadn't been diagnosed with reactive hypoglycemia (and thanks to my father, at that), I never would've found out that I was spiking and staying there after meals. I can't imagine what craziness I'd be experiencing now, when I would have no explanation and no treatment. I don't even want to think about how sick I'd feel all day, every day.
Let us know what you think of the new endo. I love my endo, too, but I'm willing to try for a second opinion (I've been thinking about this for a while). If you like the new one, maybe I'll give it a shot...
I think that Maurie is referring to my post to AliciaM, discussing the approach that Dr. Anne Peters takes with "lean adults with new diabetes" (Dr. Peters does not call them thin T2s).
Here is what I posted: Anne L. Peters MD discusses Lean Adults With New Diabetes in this video. Dr. Peters says, "Not everybody who has adult-onset type 1 diabetes will have a measureable antibody. Some won't but might appear to me to behave so much like a patient with type 1 diabetes that I will still call it adult-onset type 1 diabetes.
The reason that it is so important to differentiate between the types of diabetes is that although initially these patients may respond to oral agents because they still have some residual insulin secretion, they are going to progress much more quickly to needing insulin (usually either a multiple daily insulin regimen or an insulin pump) and they will begin to look more and more like a patient with type 1 diabetes. I tend to put these patients on basal insulin sooner, often they will need mealtime insulin to be added relatively early in the course of their disease, and I will discuss with them what it means to have adult-onset type 1 diabetes."
Up to 5% of type 1s never she antibodies. I myself have never shown antibodies- however, I am definitely a type 1. I make very little insulin and am extremely sensitive to insulin. I’m normal weight, work out all the time no metabolic disorders. My endo said I am definitely not type 2 nor MODY. Maybe you just don’t have antibodies
I think it is great that Anne Peters has started to discuss this. She is considered by many to be a thought leader. But she still misses the boat. We already know that 10-15% of T1s (T1s that we have "diagnosed" already) test negative for antibodies. What really irks me is that a T1 diagnosis (whether autoimmune or "other") should be made based on some criteria. And the first criteria she uses is weight. Huh? How does that make sense. And then we argue that patients that move to insulin (and control their blood sugar better) have better outcomes. Of course! That is true for all diabetics. Instead, Dr. Peters will see a patient like me with a BMI of 25.5 and place us in a box labelled T2. We won't get tested for antibodies, we won't get tested for a c-peptide. When we spend so much money running stupid useless cholesterol tests, why can't we run a c-peptide?
I want doctors to treat the "condition" not the "label." In my case as in MaximJ's case, a low c-peptide should be all that is needed to guide treatment.
I'm insulin dependent and suffer all of the typical type 1 symptoms including DK. My C peptide is <.05 and I currently test negative for GAD-65, insulin antibodies and ICA512. When I was 33 my BG started increasing, my first lab was 138 fasting and one year later it was over 600 mg/dL and my doctor put me on Glyberide, it was ineffective and I was then placed on long acting insulin and eventually added regular insulin. My brother is also a skinny diabetic 5' 11" (145lbs skinny), he did not start having high BG until he was 60 years old and also negative antibodies, he was able to take Met, Avandia, and other combinations of oral drugs for about 7 years with miserable results and high A1c's (8 to 11) I finally talked him into using insulin and he immediately dropped his A1c under 6.5% , happy, happy, happy. Our parents, children and grand children do not have any BG issues.
You just need to take vigilant care of yourself , keep in mind that diabetes comes with a diffrent face for everyone. A good Endo will be one who gives you high 5's once in a while and is willing to try new things if your not happy with your results.
Unfortunately, even top endo’s seem to use oversimplified rules in order to treat their patients. I remember seeing one discussion here where someone said that there are probably 40 different types of diabetes but we are trying to put everyone into two categories.
I had my own run in with a “thought leader” a few weeks ago. Since I work in NYC, we have some of the top docs right here locally. So I found one who has been involved with scores of clinical trials, published everywhere etc. I called her office to make an appt. They asked me to describe my situation and send them any test results I had. To my surprise, the doc called me later that day. She said there is no reason for me to see her. She said my c-peptide of 0.62 is normal. I responded, “if I’m normal, why is my blood sugar spiking even after I eat healthy carbs?” She said, “well when I test for glucose intolerance I give 75g of carbs so you didnt do a real test.” I said, “well the fact that I am getting a spike on much less carbs means something doesn’t it?” Her response was, “maybe your meter is wrong, call me if you test positive for antibodies” and then hung up. And this is a top doc in the field. And completely unhelpful.
