I'm a little strange... and still awaiting answers

Strange in my diagnosis, not just personality.

I was diagnosed last November at the age of 26 with polyurea, polydipsia, and 15lb weight loss in 1.5 months (starting at 135 I didn’t have enough weight to lose…). My wife is an Rn and noticed the symptoms so we went to a clinic where the tried to send me home on metformin (borderline malpractice…) even though my sugar was at 685mg/dL. I spent the next 3 days in the hospital with an insulin IV in my arm, and went home with Lantus and Novalog. We assumed for the time that it was a generic type 1 after my A1C was 13.9% with ketones in my urine. Up to here, the only strange part was that I was not DKA even with a blood sugar that high. My C-Pep was less than .3 when I was admitted, but for some reason I still had insulin in my system that was preventing me from going DKA.

I really don’t have a family history of Type 1 diabetes, although my Father has a mild case of T2 (diet/exercise controlled), my grandfather (paternal) had T2, and his mother was an amputee for unknown reasons (assuming diabetes, was not well diagnosed). My 2 year older brother, however, was diagnosed with type 1 only 7 months prior to my diagnosis while still in the honeymoon phase. What gets stranger is that neither one of us have any identified antibodies from an autoimmune attack on our pancreases.

Being military, I lucked out when my endo requested MODY testing and they decided to cover the whole thing. They tested me for types 1-5 of MODY, and all but #5 were negative, and #5 was inconclusive. I know there are still 4 other types of MODY that are not publicly tested, so I still have my suspicions.

My endo also suggested that I could be a skinny type 2, and my pancreas has simply burned out due to having to overproduce for extended periods of time. The tell-tale sign for this would be after a few months of insulin, my C-pep would start to increase and my body would begin to regenerate its B cells and regain pancreatic function. This has not yet happened, so perhaps my pancreas really has been voted off the island…

My brother has had some clinical studies done as well with absolutely absurd results, such as being completely off insulin for 1.5 days, getting a 20% bag of dextrose IV, and his BS wouldn’t go above 90… basically better control than their non-diabetic subjects- the next week he’s up over 200 for no reason. I haven’t had any clinicals done like he has.

I’m currently taking 16u of Lantus in the AM and have an insulin:carb ratio of about 1:35. My most recent A1C was at 6.5, and my C-Pep was for all intents and purposes at 0. I have an excel sheet of every blood sugar I’ve taken if it helps anyone.

Does anyone have any thoughts on the scenario? Pre-emptive thanks,

Forgot to mention- I’m on Novalog for my bolus, and eat between 60g and 80g of carbs every meal (anal retentive about it), so I take 2 units every meal. For whatever reason, it doesn’t seem to matter what I eat at bedtime/dinner, my sugars are always between 70 and 120.

You are interesting, not strange!

The antibody testing does make you wonder, doesn’t it? Personally I believe there are antibodies that they haven’t discovered yet, so they aren’t included in the testing…but that’s just my own junk science theory, LOL. I have heard of some T1 kids that also tested negative.

Maybe your brother has more of the slow onset/long honeymoon LADA onset while you got the overnight punch similar to how most young kids are diagnosed. Was your brother also tested for MODY?

You could have been very close to DKA when diagnosed, and just weren’t quite there yet.

I guess the silver lining is that whatever type it is you are doing quite well based on your A1C :slight_smile: Job well done.

A certain percentage of people (maybe 10-15%) who function like Type 1’s do NOT have detectable antibodies and no one knows why. If Type 1 is defined as having antibodies, then the garbage-can diagnosis for EVERYONE else is Type 2, but that’s painting the picture with too broad a brush. There are several people on here (including me) who don’t fit in the boxes, and you are apparently one of them. I take that to mean that diabetes is a much more complex array of diseases than is currently acknowledged by the medical profession.

So what to do. Since you function like a Type 1, for all practical purposes, you ARE a Type 1. You need to be sure of getting proper treatment if you are ever hospitalized or incapacitated in any way. Antibodies are only a museum curiosity – what matters is getting the treatment you need. Here, I speak from experience, which I want NO ONE to have to go through! So though you might really be Type Weird, like I am, you are justifiably a member of the Type 1 club.

I am there with you!!! I was dx’ed Aug./08, in ICU, DKA, bs 672 , a1c 13.2 and 52 years old. My last a1c was 5.7 I think? LOL But for about a month now I haven’t needed any insulin also! Mind you I still see diabetic numbers, but they come down without insulin. Example: I ate 2 hot link and buns at 1 hour I was 180, at 2 122 and at 3 85. I also messed up and ate a bunch of candy and hit 285. Funny thing is when I woke up I was 100.
My Dr at the Veterans has given me a c-pep test and also put me on Agent Orange eval list. I was in the Army in the 70’s (1974-1977) and where I was stationed is now closed and an EPA Superfund site.
Oh Well, who knows??? You are not alone. We will assimilate. ROFLMAO

I agree with Natalie - do what you need to do to keep your blood sugar within range. They couldn’t find any antibodies in my tests, either, and my insulin needs are pretty low, but I still need it, even though there’s a part of me that sometimes thinks “Hey, maybe they’re wrong! Maybe I don’t have diabetes!”

Although autoimmune T1 (T1a) is portrayed as a consistent disorder, where patients follow a very similar path, that is just not true. Historically, most T1s “presented” in the ER, usually in DKA very similar to you. They usually were given a T1 diagnosis, insulin and sent on their way. Then over time we learned that T1a was an autoimmune process, often with antibody markers. So as Natalie notes, antibodies could be used to identiy those with T1a but we found that only 85-90% of those diagnosed with T1a have antibodies. We also found that there was a large population who had a slow onset form of T1a (so called LADA). These patients had their pancreas and blood sugar control degrade over a period of time, months or even years, often in fits and starts. These patients are classically diagnosed with the antibody tests, but obviously if only 85-90% of traditional are antibody positive, you would only expect 85-90% of LADA to be antibody positive. And then apparently 20% of T2s are antibody positive and there are non-trivial numbers of non-diabetics who are also antibody positive. So who is T1a, what defines T1a, antibodies or insulin deficiency or is it just a swag?

So in the end, T1a seems like a clear cut diagnosis with a consistent progression, but it is not. You may lose your insulin production overnight, or you may degrade over years. There are some LADA patients who have gone more than a decade before progressing to insulin. And many T1s report that their insulin production goes up and down during their honeymoon phase, perhaps reflecting regrowth of beta cells in a valiant fight against the autoimmune reaction.

And if you think the diagnosis situation for T1a is confusing, the diagnosis of T2 is even more of a tangle. I’ve just about given up on the question of my own specific diagnosis. Do you know why? Because, in the end, it doesn’t appear to matter. All that really matters is that you get proper treatment. And in terms of proper treatment for us diabetics who are insulin challenged, that treatment is insulin. And frankly, it is advantageous in terms of insurance to have a diagnosis of record as T1 if you want to get coverage for a pump or CGMS.

Hey Tim, you stole my line!! My favorite fantasy is “Maybe it went away while I wasn’t looking!” I found out the hard way that I can’t survive without insulin, and my biggest emotional struggle, when I see good numbers, is not to omit my insulin, because those numbers won’t STAY good unless I’m conscientious. Like, it’s the insulin that CREATES the good numbers, NOT my body on its own.

I DO wish the diabetes would go away, but my intellectual self is struggling valiantly to convince my emotional self that it’s here to stay, and needs to be paid attention to, or it will rage out of control, and the consequences to that aren’t pretty.

I’ve got the medication and treatment pretty much downpat. I realize that we could just both be non-antibody type 1s, but there is WAY too much coincidence there. What I’m looking for is some sort of explanation to the situation. The T1 treatment works, so I’m staying with it, no questions there.

I think that I didn’t explain well enough that I’m not really looking for treatment options, but rather viewing this from a scientific perspective. I’m looking for the “why” behind it, not the “how” to deal with it. I understand the workings of the antibodies, A1c, etc. I’ve accepted that I’m living with it and I control it well. What I’m looking for in this forum are possibilities or similar issues.

I just don’t think there IS any explanation to the situation at this time. When there are antibodies, the explanation is simple. When there aren’t, there is no real evidence to show just what is going on, only that it is. It could be that there are more antibodies than are currently recognized and tested for; it has recently been shown that there are antibody reactions going on in clear-cut Type 2’s, except that those seem to be antibodies against chemicals secreted by fat cells, not beta cells. The endocrine system is complex, and I think you just have to accept that not all the answers are in.

There is always an explanation, finding the explanation is science. I don’t believe in just accepting something as unknown, especially when its MY body. If you want to just accept it, fine and thank you for your posts.

I didn’t mean to imply that there will never be an answer. But science just doesn’t have it at this time. You are young – maybe it will come clear later – you never know. There is much more yet to be learned about the body in general than what IS known. Keep on investigating, but don’t get obsessive about it.

Hey Keith! Sucks to hear about your dx, and thanks for your Army time. Out of curiosity what did your C-pep come out to?

There are definitely antibodies that they have not yet derived tests for. To make things more complicated, there are antibodies that our bodies require in order to keep our sugars and pancreatic funciton in check. If someone happens to be missing those particular ones, he or she could also become diabetic. Interesting stuff once you start digging if you’re into the whole science behind it.

Respectfully, “why” is a tough question for all of us, really. The mechanism behind T1 is not fully documented for any of us. It’s generally agreed that there is a genetic factor and an environmental factor, but we can only speculate what that environmental factor is and if it could be avoided. It is frustrating that there aren’t more answers.

I think you’ve exhausted the clinical tests available to you, right? At this point you look like a T1 that happens to be negative to antibodies. Maybe 20 years from now the medical profession might see that as completely normal, or they will have other tests. Today, we have a lot of docs baffled over adult onset T1 which stinks.

There are some clinical studies that you might be eligible to participate in. They are often looking for people diagnosed in the last 6-12 months. Maybe this could lead to more answers? The JDRF website has a listing of all the studies. There’s also some good posts here about LADA’s who were misdiagnosed - might see some similar stories there.

Ahhhh. The “Why Question.” Why me? How did this happen? I don’t know if I can help you. This whole question has caused me distress over the years. In my case, I never got a straight answer and I’ve come to accept that there may not be an answer. I spent a lot of time frustrated by the refusals to grant me tests, antibody tests, genetic tests, for nearly two years I was even denied a c-peptide. In the end, if I had been given every test that exists, I probably still would not know the answers to these questions. I think at this point, I am perhaps reaching acceptance.

Isn’t 1:35 a pretty low IC ratio for someone who is insulin resistant?

Yep, I turned out to be very sensitive to insulin. Again, not sure why. Open to theories.

It’s not a question of “why me” but rather, “why was I not DKA?” “Why were my brother and I diagnosed in our mid-late 20s and only 7 months apart?” The “how did this happen” is the golden question of diabetes, but I’m convinced that self-education can begin to shed a little light on our individual situations.
Why were you denied a C-Pep? I would think your endo would want to check that every year or so…