I'm confused

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Recently had my labs re-run by my in person endo and my c-peptide came back as 1.54. He also ran some antibody tests:

INSULIN AUTOANTIBODY <0.4’

ZINC TRANSPORTER 8 (ZnT8) ANTIBODY <10

ISLET CELL ANTIBODY SCREEN WITH REFLEX TO TITER NEGATIVE

He somehow forgot the GAD-65 so when I saw him last week, he said that especially if the GAD-65 shows up negative, that I was a type 2 but he would continue to code me as type 1 so that I can continue to get high dosage Novolog vials, Dexcom G6 and Omnipod Dash without problems.

I’m also on the highest dosage of Ozempic.

I asked about Mounjaro, but he said he would have to re-code me as Type 2 and then I may have problems with the above.

I also asked about the Twist pump, and he said that with my blood work etc. that if he got audited he couldn’t back up type 1 and the twist is only authorized for Type 1 while the Dexcom and Omnipod was cleared for Type 2s as well?

He also said he wasn’t comfortable double diagnosing me as Type 1 and 2.

I’m also a part of BlueCircleHealth.com and was talking to my online endo and she said something that didn’t make much sense to me:

  1. Even if my pancreas went to 0.0 that because I don’t have any antibodies, I would NEVER be a type 1?
  2. Type 2s can never develop Type 1 later in life?

I thought just having a 0.0 c-peptide, which says no insulin is made by your pancreas, was enough to call you a Type 1 and that mine was hanging on by a thread.

I’m just so confused.

I guess technically what I’d be considered an insulin dependent type 2 then?

My online endo said that Mounjaro might help me with my insulin resistance (about 125-150 units of insulin daily) and weight loss so that maybe I would be able to someday get to 72 hours of Omnipod dash using the Omnipod for both basal and bolus. (currently I’m doing either FIASP or Afrezza for bolusing and still only getting about 48-60 hours of Omnipod before it empties).

She also suggested maybe looking into a GLP2 as well?

All of that would need me re-coded as type 2 though and I definitely don’t want to make it harder to get insulin, G7 and Omnipods.

Thoughts?

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I was diagnosed as type 1 back in 1987 before any antibody tests were available. I was also in DKA, so maybe that’s why.
But it took me a year before my c peptide was at zero.
I think with a zero c peptide, you could be diagnosed as type 1, but switching back and forth between diagnoses will cause you problems with insurance in the future.
Hopefully you can figure what type you are so you can go with that treatment plan.
I know that you can get. Dignosis as type 1 with insulin resistance.
But your total insulin needs to be pretty high,based on weight of course,not sure if your insulin doses are enough.
I m 6’3 and I weigh 207 lbs and I’m using about 55 units a day.
I took metformin a while, but it had very little impact so I stopped. I’ve been around the same my whole life maybe it was 40 when I was young, but I also wasn’t in great control back then.
I don’t really know what amount of insulin is good for you or for me, for that matter. But I’m sure that less is better.
So if you can figure out a way to maintain your sugars and reduce insulin, I would try it.
I changed my diet a Few years ago and it helped reduce some insulin.
But I think I’m not going to be able to get under 50 units no matter what I do.
Those type 2 injections are a no go for me, my doctor says no, and they are too dangerous and I’m not heavy enough for a weight loss diagnosis, not sure I would try them anyway since I’m pretty well controlled.
I wish there was a better way to get you dialed in

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My understanding is that the level of c-peptide in the blood suggests the distinction between T1D and T2D. According to WebMD, a normal level is 0.5 to 2.0. Your level of 1.54 falls into this range. This is most consistent with T2D, not T1D.

Medicare requires that all recently eligible Medicare members who desire T1D benefits, submit a one-time c-peptide test < 0.1.

Coming up negative on 3 autoantibody screens supports a T2D diagnosis.

As a T1D, diagnosed in 1984, I’ve never had my autoantibodies tested so I don’t think that is definitive for a T1D diagnosis.

In any case, your exogenous total daily dose of insulin, at 125-150 units, indicates substantial insulin resistance to me. That amount is in addition to your home-grown insulin as indicated by your c-peptide of 1.54.

I don’t agree with any insurance policies that exclude T2Ds from insulin pump, CGM, or other medication like the GLP-1’s. I sympathize with your reluctance to correct your diagnosis to T2D.

If I were you, I would make my top health goal to reduce my insulin resistance. That most likely means some lifestyle habits including eating. That’s tough for most people and success is limited. If you do choose to take the plunge, I would suggest using a program like Virta Health. Their program is comprehensive and includes remote check-ins and coaching support in addition to medical support. Their success rate is stronger than just Rx’s and the unhelpful, “eat less, move more” advice often given.

Good luck!

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I bet your doctors are confused too.
Here’s the ADA flowchart on diagnosing type 1 versus 2.
2. Diagnosis and Classification of Diabetes: Standards of Care in Diabetes—2025 Figure 2.1
Sounds like your are in the Unclear Classification box. Does your history point towards the monogenic section, even if you fudge the age threshold a little? Do you remember the lab results that diagnosed you as a diabetic?

Have your docs, now or in the past, made progress diagnosing any contributors to your insulin “resistance”?

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I’m T1 and started on it about 6 weeks back. My new endo prescribed it as an alternative to Jardiance (also off label) which my old endo had put me on. She didn’t want me taking it (“contra-indicated!”) and said she was seeing evidence Mounjaro was working well for some T1s—that it would likely work better for me than Jardiance. Insurance denied at first (UHC MedicareRx) but she appealed and they approved. The policy says “For Type 2 diabetes, NOT for weight loss,” so I was concerned they deny the appeal on the basis of T1 not T2, but apparently the “diabetes” is what counts, not which kind. Someone on a FB T1 group I belong to had a similar experience. I specifically told my endo not to pursue it if it was going to change my designation from T1 to T2 (disastrous!) but she reassured me it wouldn’t and to my surprise it went through.

So far I’ve found she was correct about it being more effective than Jardiance in attenuating my post-prandial excursions. And I’ve lost 10 lbs, which is a bonus.

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I think that Barbara Davis in CO does some testing for free. They would know how to interpret the results. Maybe you could get a 2nd opinion from them. I don’t think that you have to travel there.

Screening: T1D Screening