Indeterminate diabetes

Hi there MarthaD. You are in the same position as I am, only you have a title for it. Your C-peptides are outside of the normal range. It means you may not be producing enough insulin. They measure C-peptides, not insulin as C-Peptides are directly correlated with insulin and are more stable, so they can determine how much insulin your pancreas is producing. At 309 pmol/ls you are not producing enough insulin to keep your blood sugars in the normal range, even after taking Metformin. They will want to find out why your pancreas is not producing enough insulin. Type 1, late onset or LADA is often initially diagnosed as Type 2 at first because they start off very similar, raised blood sugars, but then as time goes by you will have difficulty keeping your blood sugars in check. Your C-peptides will continue to fall. T2 is far more prevalent than T1 so often one gets put into the Type 2 club, simply because 90% of people have Type 2 . T2 is controllable either through medication or diet and exercise. if you are T1 blood lowering meds will not work, neither will low carb diets after a time, because T1 is an autoimmune form of diabetes. They will very likely test to see if you are producing antibodies. There are 4 types of antibodies that show up. Just positive for 1 type of antibody will confirm a diagnosis of Type 1. Type 2 on the other hand can be controlled with meds and or diet. People with Type 2 do not produce enough insulin, either because genetically their pancreas is unable to produce enough or some insult has occurred to compromise the pancreas, but it’s not autoimmune. both T1 and T2 involve high blood sugars but for different reasons. Your med team are taking a wait and see approach.

I too suffer from Hypos, unstable blood sugars and the very low carb diet I was on made little difference to me either. Like you I don’t fit the T2 profile. I’m thin BMI of 19, and very fit.
I am going to tag @Antje77 who is also late onset T1 who will likely be able to offer more info for you.
It’s a wait and see situation which I know is very frustrating.

Sorry my edit button is not working. I should also mention that in Type 2, you will see much higher C-peptides because in T2 insulin resistance plays a part and the pancreas has to produce a lot more insulin to counter this insulin resistance, but the pancreas cannot produce enough. It tops out, so blood sugars rise. Your C-peptides are low at 309 pmol/s whereas in Type 2 you would likely be producing a lot more, over 1000 plus pmol/s.

HSSS said:

I‘d also ask if there was any reason RH could not coexist - for a time - alongside LADA (which you do have some symproms that align with it) as it can alongside type 2 being that each is a separate condition.

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I've never had hypos (as far as I know) before starting insulin, but in the various LADA/T1 Facebook groups I follow I see a lot of people early in diagnosis who do get hypos/RH despite not being on insulin yet.
My thinking is that during the honeymoon the pancreas can splutter out insulin in quite unpredictable ways for some. Just my thinking though, I don't have any sources on this.

Melgar said:

I am going to tag @Antje77 who is also late onset T1 who will likely be able to offer more info for you.

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Thanks for the tag, but I was just about to tag you when I read the post!
Even if it turns out that @MarthaD (or yourself for that matter) do have T1, it's nothing like mine. I'll share some of my own experiences anyway in case they are useful.
I was only diagnosed when I was already very much diabetic with an hba1c of 78, and within a month it was very clear that tablets and diet weren't going to do the trick so I've been a happy insulin user almost from the start.

MarthaD said:

I'm also not presently testing positive for any antibodies, so that adds to the confusion. I presume if I was delayed type 1, I'd already have some antibodies, but I may well be wrong about that.

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Not everyone shows antibodies, and from what I understand they can come and go as well, no idea how this works though.
So positive antibodies + diabetes = T1. But negative antibodies don't rule out T1 at all.

I asked for a referral to have my antibodies and C-peptide tested two years after my initial T2 diagnosis because things didn't quite add up from a T2 perspective to me.
I was only tested for the anti GAD ones, which were negative.
My C-peptide came back just below low normal at that point.
My endo decided that the combination of a low insulin production fitting with a honeymoon, and the fact that I needed insulin right after diagnosis despite going low carb was enough for a T1 diagnosis with a small question mark. She offered to test for the other antibodies if I really wanted it but I declined.

I feel @MarthaD ’s frustration, as I’m going through something similar. Martha may well be late onset T1 , and so may I, but when you have unusual symptoms that don’t fit neatly into the T1/T2 category, and yes there are other types, but those other types, seem to me, to be well defined, then things get confusing. The overarching T2 category encompassing everything from your typical classic T2 to anything that’s simply not T1 then it becomes a burden on those people who do not fit neatly into the T2 category. Those differing symptoms don’t bode well with the possibility of poor outcomes for controlling blood sugars. It doesn’t help when GP’s look at you with a look that says I haven’t a clue, let’s wait and see.

And how many GP’s have heard of RH. I also seriously considered RH, but increasing my carb intake to prevent hypos is not RH In fact it’s the reverse of it.

Sorry Martha D I’ve gone slightly off topic.