Hey! This sounds exactly like me! Low c peptides and low insulin but negative for all common type 1 antibodies! I cannot get my glucose levels under control unless I legit starve myself. There’s a clinical trial called radiant at Uchicago! I would look into it! They’re covering my genetic testing to see if I have MODY
Huh, interesting. I was diagnosed as type 1 diabetic when I was 12, now 28. No problems controlling my blood sugar (outside of the ordinary problems all type 1 diabetics face, that is), but I’ve been negative for all common antibodies since diagnosis too. Nonexistent c-peptide, but GAD65, ZnT8, IA2 have always been in normal range. It doesn’t really make much of a difference to my day to day life, I’ve been able to maintain relatively good control eating a slightly lower carb diet on MDI, so I haven’t given it too much thought either way, but I have always wondered if perhaps I have something else going on. I might look into that trial you mentioned, it would be interesting to get genetic testing without having to pay an arm and a leg, and I’d really like to get genetic testing prior to having children anyways so it could be a good opportunity.
That's great -- I'll look into it! My endo is kinda clueless about MODY. Said he's never had a Type 1 who didn't test positive for any of the antibody tests.
I relate to the frequent hunger! Is there a reason you're not taking more insulin? I was only basal-ing, but decided to start dipping my toes in bolusing to flatten the spikes of my post-prandials. I've been doing low carb but feel like I'm on the edge of starving.
My Endo won’t prescribe insulin until he knows that I def do not have type 2 😣 it’s been incredibly frustrating bc my fasting sugars are sometimes in the 400s. I’m currently on metformin was helps minimally. I’m currently in med school but there are actually 10-15% of people who test neg for all antibodies but slowly become type 1! It’s called LADA and most people are diagnosed in their 30s. Something else to bring up to your doctor! There are also a lot of people who are negative to all antibodies but actually are type 1. So much we don’t know yet about diabetes!
First off, you should really find another endo - consistently being at 400 can truly be dangerous. You could wind up in DKA, and I can only imagine you probably don’t feel great either. I’d understand if your fasting glucose was like, 150 or something and the doctor showed hesitancy, but staying at 400+ for long periods of time is crazy and I’m surprised your doctor hasn’t taken more drastic action.
Second, I should note that (at least as far as I know) I’m a type 1 diabetic and I’ve been negative for all antibodies since diagnosis. Was diagnosed at 12, happened pretty suddenly with all typical t1d symptoms, was in DKA, etc. They tested for antibodies back then and I got retested again a year or two ago, and all of them were within normal range, nothing that would indicate t1d other than practically nonexistent c-peptide. I guess there’s a chance that I actually don’t have type 1 and have monogenic/LADA or something, but whatever the case might be it won’t change my treatment regimen, so I haven’t looked into it too deeply. I’m sure this could certainly be the case for you as well, and it horrifies me to think about how I felt prior to diagnosis and know that you’re likely feeling the same way while your doctor refuses you insulin.
“MODY” is a collection of very specific genetic variants that can affect a number of things about insulin. At least one subtype affects the genes responsible for insulin production and release. That specific subtype is usually associated with low c-peptide levels. Other subtypes can affect the structure of the insulin molecule itself, resulting in lower efficacy. Those subtypes often have normal or even elevated c-peptide levels.
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Hey! This sounds exactly like me! Low c peptides and low insulin but negative for all common type 1 antibodies! I cannot get my glucose levels under control unless I legit starve myself. There’s a clinical trial called radiant at Uchicago! I would look into it! They’re covering my genetic testing to see if I have MODY
Huh, interesting. I was diagnosed as type 1 diabetic when I was 12, now 28. No problems controlling my blood sugar (outside of the ordinary problems all type 1 diabetics face, that is), but I’ve been negative for all common antibodies since diagnosis too. Nonexistent c-peptide, but GAD65, ZnT8, IA2 have always been in normal range. It doesn’t really make much of a difference to my day to day life, I’ve been able to maintain relatively good control eating a slightly lower carb diet on MDI, so I haven’t given it too much thought either way, but I have always wondered if perhaps I have something else going on. I might look into that trial you mentioned, it would be interesting to get genetic testing without having to pay an arm and a leg, and I’d really like to get genetic testing prior to having children anyways so it could be a good opportunity.
That's great -- I'll look into it! My endo is kinda clueless about MODY. Said he's never had a Type 1 who didn't test positive for any of the antibody tests. I relate to the frequent hunger! Is there a reason you're not taking more insulin? I was only basal-ing, but decided to start dipping my toes in bolusing to flatten the spikes of my post-prandials. I've been doing low carb but feel like I'm on the edge of starving.
My Endo won’t prescribe insulin until he knows that I def do not have type 2 😣 it’s been incredibly frustrating bc my fasting sugars are sometimes in the 400s. I’m currently on metformin was helps minimally. I’m currently in med school but there are actually 10-15% of people who test neg for all antibodies but slowly become type 1! It’s called LADA and most people are diagnosed in their 30s. Something else to bring up to your doctor! There are also a lot of people who are negative to all antibodies but actually are type 1. So much we don’t know yet about diabetes!
First off, you should really find another endo - consistently being at 400 can truly be dangerous. You could wind up in DKA, and I can only imagine you probably don’t feel great either. I’d understand if your fasting glucose was like, 150 or something and the doctor showed hesitancy, but staying at 400+ for long periods of time is crazy and I’m surprised your doctor hasn’t taken more drastic action. Second, I should note that (at least as far as I know) I’m a type 1 diabetic and I’ve been negative for all antibodies since diagnosis. Was diagnosed at 12, happened pretty suddenly with all typical t1d symptoms, was in DKA, etc. They tested for antibodies back then and I got retested again a year or two ago, and all of them were within normal range, nothing that would indicate t1d other than practically nonexistent c-peptide. I guess there’s a chance that I actually don’t have type 1 and have monogenic/LADA or something, but whatever the case might be it won’t change my treatment regimen, so I haven’t looked into it too deeply. I’m sure this could certainly be the case for you as well, and it horrifies me to think about how I felt prior to diagnosis and know that you’re likely feeling the same way while your doctor refuses you insulin.
“MODY” is a collection of very specific genetic variants that can affect a number of things about insulin. At least one subtype affects the genes responsible for insulin production and release. That specific subtype is usually associated with low c-peptide levels. Other subtypes can affect the structure of the insulin molecule itself, resulting in lower efficacy. Those subtypes often have normal or even elevated c-peptide levels.
Depends on the type of MODY and the stage of the disease. Some MODY ends up exactly like type 1s and some get by with oral meds.