Initial assessment Type 1, now Type 2?

I am a newly diagnosed diabetic at age 33. Two months ago I was in the hospital for DKA (BG 330) and my primary physicial thought I had Type 1 because there was barely any measureable amount of insulin from bloodwork before I admitted myself to the ER.

Since then, I've been placed on a Levemir and Novolog regimen. I'm currently on 47u of Levemir a day and don't have to inject Novolog unless I eat more than 45g a meal. About three weeks ago, I had my first endocrinologist visit and he immediately ordered GAD65 antibody, islet cell antibody, IA-2 antibody and C-Peptide test. All the antibody tests came back negative however my C-Peptide test was 1.3 which is very low. From this, my endo thinks that I may have Type 2 and wanted me to continue my use of insulin, diet and excercise and visit him in a couple months.

I understand that Type 2's usually produce normal amount of insulin (or close to normal) and it's just that the cells are resistant to the insulin. After 10-20 years, then the pancreas may cease to produce sufficient insulin such that the patient may need to get on insulin treatment. I seem to have skipped that phase completely and my pancreas decided to produce very little insulin. Furrthermore, it seems like my body is not that resistant to insulin since I'm only taking 47u of Levemir a day. My insulin to carb is about 1:15 if I need to use bolus for a meal that's more than 45g of carbs. My BG has been very stable since I've been out of the hospital and the lowest it ever got was 80 on a couple instances after excercising. On top of that, I thought it was very rare for Type 2's to get DKA because the amount of insulin that's in our body is enough to prevent us from going into ketoacidosis.

At this point, I'd have to believe that I'm a Type 2, however I don't feel like I have the same symptoms as other Type 2's and I'm still treating my diabetes like it's Type 1. Any thoughts?

Well, while it is a little more uncommon, there ARE Ketosis Prone Type 2 Diabetics, and we have a few members who fit that description. I would like to refer you to the group Ketosis Prone Type 2 Diabetics, and it’s creator, Michael Barker (who is himself a Ketosis Prone Type 2 Diabetic, initially diagnosed as a Type 1.) Thanks for sharing with us. :slight_smile:

Thanks so much for pointing this out.
I’ve joined the group.
Looks like I might be Type 1B (idiopathic diabetes).

All these newfangled blood tests. Not sure they actually help settle much. I was diagnosed when I peed on the testape and it turned jet black!

47 units/day is not a “small” amount of insulin.

T1’s often have a honeymoon months after diagnosis where amount of insulin needed goes down or may even disappear. In the case of adult-onset T1 the honeymoon period seems to be more drawn out and lengthened.

Most important is to be getting the right amount of insulin.

Do you know what your BG was at the time of c-peptide? Technically, a c-peptide of 1.3 ng/mL is not considered low (although the exact range varies from lab-to-lab). My lab considers anything from 0.8 ng/mL to 3.1 ng/mL to be “in range.” Knowing your BG at the time would yeild additional diagnostic information.

However, your c-peptide result, combined with your negative antibody panel, would be indicative of T2. Also, 330 mg/dl seems low for DKA. Were there other things happening (e.g., dehydration, illness, etc.)? It is extremely rare for T2s to spill ketones, but it does happen.

Given that you’re producing a decent amount of insulin, I think it’s clear that you are insulin resistent. Remember, the injected insulin is supplementing your existing production, so while an I:C of 1:15 seems small, it really isn’t. Also, 47U of Levemir is a lot more than a typical T1 dose (although that varies).

I am somewhat surprised that an attempt at oral meds was not made before putting you on insulin. You would probably respond well to metformin or another oral agent. I would definitely suggest speaking to your endo about your options.

BG (fasting) was 101 on the lab. The lab’s in range was 0.9 to 7.1 ng/mL.
I was severely dehydrated, loss of appetite, vomiting, tired, shortness of breath.
ER had to put in on IV, drip insulin and potassium tablets.

My primary physician did prescribe Amaryl for me which I was on for two days before I went into ER but my BG was not responding to it.

Thanks for your advice, I’ll ask my endo about oral meds next visit.

Sometimes, type 2s can also suffer from a condition called Hyperosmolar Hyperglycemic State (HHS) (also called Hyperosmolar Nonketotic State (HNS)) which involves high blood sugar, dehydration and sometimes a severe electrolyte imbalance (such as a potassium deficiency). As Shannon has pointed out, a c-peptide of 1.3 ng/dl is in the normal range and unless that occurred at the same times as a high blood sugar (200 mg/dl) it probably does not tell you much of anything. In your case, a fasting of 101 mg/dl is normal, so that test told you nothing about whether you are insulin deficient or not.

Having the three antibody tests demonstrated with at least 80% confidence that you don’t have an autoimmune induced diabetes.

Type 2s are not immune from DKA, but using external insulin makes you more susceptible to DKA. In either case, you may have suffered form HHS which is just as serious and can lead to a diabetic coma. In many cases it can take days (or in the case of metformin weeks) for medication to take effect. If your blood sugar was too high and you became dehydrated that may have triggered your problems.

You current insulin use may not indicate anything about whether you are insulin resistant or not. It may well be that you have one of the rarer forms of diabetes such as Lizmari notes. Time will tell. One of our members Michael Barker has this form and is very knowledgable. Get your diet in order, work on a good exercise program. You may well find that some of these medications work wonders.

I am a type 2 now on metformin. I was DKA with 1000+ blood sugar. After a year of insulin Humalog and Lantus I went down to normal levels. I had normal levels for 2 years and then things started to creep back up because of bad habits and now I am on 1000 mg of metformin a day. I am in Mike’s group feel free to send me messages if you have any questions

Thanks for such a thorough response!

I think i forgot to mention that I lost about 30 pounds in 45 days. I didn’t really feel any different physically until the last 7 days before going into the ER.
I don’t have the printout of my blood/urine test before going into the ER with me however I do recall the doctor saying that there’s high levels of ketones in my urine.

In which case would be DKA more so than HHS right?

In this community we only speculate, complain and whine. We leave the formal diagnosing and treating to the doctors. I’d suggest you talk with your doctor about it. In some sense, it probably does not matter, you were messed up, the treatments of DKA and HHS are basically the same insulin and IV hydration.

I’ve spent countless hours speculating on how I got diabetes, what is causing it and why In my heart, I realize that even the best medical minds don’t know what is going on. Beating myself up over the whys and hows does me no good. It is just the way it is. All we can do is just try to make the best decisions about how to manage the condition.

Since the GAD was negative that means it is not Type 1. Many T 2’s start off on insulin right away. Some are able to wean to long acting once numbers get under control. There are also 8 or 9 versions of MODY diabetes which are people who don’t produce antibodies but don’t have the Type 2 symtoms either.

Hi Wildarms

Welcome to the wild and wacky world of Ketosis Prone Diabetes, KPD for short! It isn’t all that bad as far as diabetes goes, you could do worse.

The first thing you should recognize is that what you have isn’t rare. It’s rarely talked about so people assume it’s rare. You will note that the ADA lists it as T1b, basically saying that it is a type 1 diabetes. This came about because T1b’s present with either severe ketosis or DKA and the standard treatment is an intensive insulin therapy. When you went to ER, you didn’t have a functioning pancreas, which to most docs screams T1. This classification will be changing in the future because it was found that a good deal of the DKA’s could become T2 and some would even remitt. Yep, you heard that right, remitt. It is one of the oddest parts about KPD. You have normal fasting sugars and 6 months later find yourself at death’s door then after another six months find yourself with normal blood sugars and on no meds. I did mention “wacky” didn’t I?
There are some things you are going to have to come to grips with though. The first one is carbs. You are taking 47u of Levemir, which indicates to me that you have significant insulin resistance. IR and high carbs do not make a good mix. I can’t do better than 30 carbs in a day, forget about a meal. Most, though not all, of the KPD’s I have met spike very badly on carbs and tend to do better on higher fat, protein diets. Your typical CDE will suggest that you take in 200 to 300 carbs a day. Your typical CDE, however, has never heard of Ketosis Prone Diabetes. You’ll have to listen to your meter. Anything that spikes you past 180 after an hour should be avoided. You will find this is going to take a lot of food off the table. It’s also going to start to bring your resistance down and, with it, your dosages. You will start to see lows. Right now your liver is probably kicking out enough sugar to prevent any possibilities of lows but don’t expect that to be the case as you get healthier.

Your C-pep is low normal. If you follow the standard pattern by fall it should double and you can probably handle your diabetes with diet and excercise. I wouldn’t get too happy here. No one knows why this happens. It interacts with carbs but the same carbs that didn’t much bother you 2 years ago drives up your blood sugars now. What’s the trigger? Getting the monster back in the box isn’t the same as knowing how it got out in the first place.

Check out my blog, if you want to see the serious science behind this and leave a comment.
Good Luck

I burnt out on getting a meaningful diagnosis from medical professionals. The fact is that the diagnostic criteria for the huge spectrum of disorders that result in diabetic presentation, is garbage. If they actually gave the two large classifications descriptive names, rather than simply names that set them apart from each other, what actually does set them apart would be a lot less grey.

Some will tell your type 1 is solely autoimmune, yet idiopathic insulin deficiency is classified as type 1 by the ADA. Some will tell you that type 2 is characterized by insulin resistance, yet insulin resistance on its own, without elevated blood glucose, is not even considered diabetes. Even the simplest differentiator, dependence on exogenous insulin for survival, is worthless, because there is the baseless restriction that diabetes cannot change classification as the nature of the underlying disorder changes. Its very circular, and mostly political.

I do not feel that I get anything meaningful out of entertaining research/insurance politics. When the medical community decides to start basing diabetic diagnostic criteria on physical reality, and not some loopy acid trip of politico-financial ballet, then maybe the type 1/type 2 thing can be considered relevant to diabetics.

Jessopher -

Valid points but only a problem in health systems where the pernicious hand of the insurance companies has a stranglehold on the healthcare system. I live in the UK and presented with exactly the same clinical symptoms as the OP above. There are at least five different names for the type of diabetes I have (one is 1b and another is ketosis-prone T2 - so much for those who keep insisting that 1 and 2 are completely different!!). But neither the hospital nor my GP really care as I am simply treated as insulin dependent+insulin resistant. Aside from the nurse who told me I need 130g of carbs a day for my brain to function, I have only good things to say about the medical professionals who have treated me. I think we should not tar everybody with the same brush.

im not trying to tar individual medical professionals. Reguardless of healthcare system providing care, the knowledge base as a whole has been tared with the same brush. There are easy ways to fix diabetic diagnostic criteria so that it makes sense. The information is there. But setting the direct economic influences aside, there is also research politics involved. Academia can be just as loopy and political as industry can. That is universal, and not at all dependent heathcare infrastructure, geography, or government.

I am type 1.5 based solely on my low c-peptide that continues to drop lower and lower just recently was put on insulin, sounds like you are type 1.5/LADA to me.
My IA test came back negative as well and never had a GAD which I’m sure prob would have come back positive.

OP and myself already have at least 5 different names for our diabetes, lol, so I don’t think a 6th is needed. I remember the hospital telling me ‘it doesn’t matter what ‘type’, the only solution is insulin’. So I did not have to put up the courageous and spirited struggle that you went through, LiL MaMa.

There are some people that never test positive for any diabetic antibodies, so a diagnosis that states it is autoimmune in nature wont work. Type 1b (or insulin deficient type 2) people’s beta cell function is impeded for other than autoimmune reasons.