Indeterminate diabetes

[MarthaD]

I've had a letter from my consultant saying that at present I've a type of diabetes that is indeterminate. My c peptide is 309 and decreasing over time. They will check it again at three years post diagnosis, and that can be used to check my "type 1 genetic risk score". I'll have an appointment to discuss this soon, but I'm still trying to process what all this means. For extra info, I was diagnosed 2 years ago as type 2, but I didn't fit the typical profile. Meanwhile, my bmi keeps falling (currently 21.7), and I've hypos all the time. Reactive hypoglycemia has been ruled out. I'm on max dose of metformin and mostly eat low carb. When i do eat carbs, my BG can go very quickly to about 20. Confused.com!

 

[Melgar]

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.

 

[Melgar]

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.

 

[EllieM]

Hi @MarthaD I would also like to point out that there are more types of diabetes other than T1 and T2. The most common of the other types are T3c (when your pancreas is damaged and digestive enzyme supplements such as creon are sometimes required as well) and MODY (is a genetic variant of diabetes with a large number of different subtypes and treatments).

There are other types as well but I know even less about them. I would hope that your consultant is treating your bmi drop seriously and considering non diabetic as well as diabetic causes for this.

Good luck.

 

[MarthaD]

Thanks so much for your reply. I forgot some important info in my original post. They tested for MODY and was negative. 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.

 

[HSSS]

Thanks so much for your reply. I forgot some important info in my original post. They tested for MODY and was negative. 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.

Not all type 1 show antibodies when tested (they may have missed them timing wise for example) and it depends if they checked them all or just one type. A positive antibodies test, along with the clinical picture, is pretty conclusive but a negative one is much less clear cut despite some consultants not recognising that fact.

 

[HSSS]

I read through your past posts as I had a lot of questions and wondered if you’d already answered them elsewhere (you mostly had).

Your RH testing might not have shown an actual hypo but you started from a very high level and did drop significantly and to below the starting level after a few hours. That to me looks classically RH in pattern just with a shift to the right of all the numbers (I think @Lamont D gave numerical example and explanation previously). I personally would want this exploring and explaining further by the consultant.

Have they checked the pancreas directly and looked for any other causes of hypoglycemia?

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. Obviously once insulin production fell low enough or stopped entirely then the hypos caused by the “overreaction” would stop because there was none to overreact with, effectively “curing“ the RH leaving you with “just” the type 1.

 

[Antje77]

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.

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.

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

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.

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.

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.

 

[Lamont D]

Hi @MarthaD ,
I have read the thread, and agree with others that there is something odd going on with the tests you have had.
I may have missed something as in the thread, you don't mention why your doctors dismisses RH or another form of hypoglycaemia. Such as @Melgar has suggested, as he is slightly different than I am.
If you are having episodes of hypoglycaemia there must be a reason for it.
Having high BG levels after food, then a sugar crash later, has to be a reason.
T2 can have RH as well, because the precursor from prediabetes to T2 involve the first phase imbalance of hormones particularly insulin. This has a reaction to your second phase and the drop in blood glucose levels.
So, even if you start in diabetic range, the reaction will happen.

What tests have you had other than hba1c?
Have you had an OGTT?
If so, how long was it?

Be prepared for your appointment, and if you have records of what your blood records have been, from your glucometer or CGM, that will help immensely. Together with what you ate etc.

Don't let the doctors fob you off without doing the diagnostic checks.
Best wishes.

 

[HSSS]

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.

Sounds a very reasonable theory

 

[HSSS]

This earlier thread explains the RH testing done previously for @MarthaD https://www.diabetes.co.uk/forum/threads/mixed-meal-test.202442/#post-2692753

 

[Melgar]

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.

 

[Lamont D]

This earlier thread explains the RH testing done previously for @MarthaD https://www.diabetes.co.uk/forum/threads/mixed-meal-test.202442/#post-2692753

Thanks @HSSS
Yes, but it was a strange mixed meal test @MarthaD .
I would still ask for an eOGTT.
Or ask for further tests based on the results you have already.
It is frustrating, but hopefully it will be srted.
Best wishes.

 

[MarthaD]

Thanks for all the replies. I'm learning so much on this journey and have a whole list of new questions for my endo. Every day is a school day with this disease!

 

[Lamont D]

Thanks for all the replies. I'm learning so much on this journey and have a whole list of new questions for my endo. Every day is a school day with this disease!

The key to something, that I have, or in your case, is knowledge.
How your body works and how to prevent symptoms.
Awareness of what is not healthy for you.
And the aim of being as healthy as you can.
May you succeed.
Best wishes.