Autoantibody-Negative Type 1 / Low insulin need

[Rory Delap's Long Throw]

Hi all,
Wondering if anyone on the board has experience of (what I understand) is a sub type of type 1 diabetes. I was diagnosed T1 in March this year, and thought I was going through a honeymoon period given the relatively low basal requirement and only bolusing at breakfast (to cover while the bolus comes in to effect).
My recent catch up with the clinic noted my C-peptide was very low (0.6), which I was told is essentially no insulin being produced in the body. So no honeymoon period seemingly, and autoantibody negative (although I also read this may happen after a period of time after diagnosis as doesn't mean I'm not type 1).
The clinic haven't raised any eyebrows, but I can't find much info or people reporting a very low (I think) basal (3 units), which covers a relatively steady amount of carbs through the day, even large meals up to 90g of carbs, with a steady amount of activity without doing loads of exercise.
Anyone out there with a similar experience?

 

[CliffH]

Hi all,
Wondering if anyone on the board has experience of (what I understand) is a sub type of type 1 diabetes. I was diagnosed T1 in March this year, and thought I was going through a honeymoon period given the relatively low basal requirement and only bolusing at breakfast (to cover while the bolus comes in to effect).
My recent catch up with the clinic noted my C-peptide was very low (0.6), which I was told is essentially no insulin being produced in the body. So no honeymoon period seemingly, and autoantibody negative (although I also read this may happen after a period of time after diagnosis as doesn't mean I'm not type 1).
The clinic haven't raised any eyebrows, but I can't find much info or people reporting a very low (I think) basal (3 units), which covers a relatively steady amount of carbs through the day, even large meals up to 90g of carbs, with a steady amount of activity without doing loads of exercise.
Anyone out there with a similar experience?

Are you saying that the only insulin you take is 3 units of "basal" (at night?), apart from the fast-acting 'top-up' insulin before breakfast? How many units do you take of that insulin?

 

[everydayupsanddowns]

That does sound unusual @Rory Delap's Long Throw

Was your cPeptide measured after carbohydrates had been consumed (stimulated) or was it a fasting test?

Some forum members with later-onset T1 do need smaller doses, but that seems to be where there is some residual beta-cell capacity to make up the difference?

 

[Inka]

There was a recent newbie who just took basal and took a small dose. I can’t remember if she took 4 or 6 units of basal a day but it was something like that. I don’t think it’s uncommon in older adults with Type 1 soon after diagnosis.

Can you give some more details about your C peptide test?

 

[Rory Delap's Long Throw]

Thanks for all the replies, I'll add some more information;

Are you saying that the only insulin you take is 3 units of "basal" (at night?), apart from the fast-acting 'top-up' insulin before breakfast? How many units do you take of that insulin?

My routine is 3 units basal each morning, at the same time as taking 3 units of novirapid for bolus.

That does sound unusual @Rory Delap's Long Throw

Was your cPeptide measured after carbohydrates had been consumed (stimulated) or was it a fasting test?

Some forum members with later-onset T1 do need smaller doses, but that seems to be where there is some residual beta-cell capacity to make up the difference?

Interestingly the c-peptide test was taken fasted, while I was admitted to A+E back in March. I thought the same, that I was in a honeymoon period.
Actually in hospital my starting units were 20 basal, 10 bolus breakfast, 8 lunch and 8 for dinner. Getting home from A&E my needs have dipped dramatically over the months;

March '24 - 20 / 10 / 8 / 8 (basal / breakfast / lunch / dinner)
end of May - 9 / 3 / 0 / 0
July - 6 / 3 / 0 / 0
Now - 3 / 3 / 0 / 0

There was a recent newbie who just took basal and took a small dose. I can’t remember if she took 4 or 6 units of basal a day but it was something like that. I don’t think it’s uncommon in older adults with Type 1 soon after diagnosis.

Can you give some more details about your C peptide test?

Sure 🙂
C-Peptide test was March so in A+E, at 0.6ug/l . Hba1c was 14% at the time, but now 5.5% from a test last month.
Just re-reading my notes from the clinic meeting last month, summarises as 'antibodies noted as negative, but C-peptide very low at 0.6. Probably a case of antibody negative type 1 which is constitutes roughly 5% of those with type 1.'

A bit of a head scratcher, I expected to lower the amount of insulin to a certain degree, but honestly thought it was increasing sensitivity while recovering, plus a honeymoon!

 

[CliffH]

Thanks for all the replies, I'll add some more information;

My routine is 3 units basal each morning, at the same time as taking 3 units of novirapid for bolus.


Interestingly the c-peptide test was taken fasted, while I was admitted to A+E back in March. I thought the same, that I was in a honeymoon period.
Actually in hospital my starting units were 20 basal, 10 bolus breakfast, 8 lunch and 8 for dinner. Getting home from A&E my needs have dipped dramatically over the months;

March '24 - 20 / 10 / 8 / 8 (basal / breakfast / lunch / dinner)
end of May - 9 / 3 / 0 / 0
July - 6 / 3 / 0 / 0
Now - 3 / 3 / 0 / 0


Sure 🙂
C-Peptide test was March so in A+E, at 0.6ug/l . Hba1c was 14% at the time, but now 5.5% from a test last month.
Just re-reading my notes from the clinic meeting last month, summarises as 'antibodies noted as negative, but C-peptide very low at 0.6. Probably a case of antibody negative type 1 which is constitutes roughly 5% of those with type 1.'

A bit of a head scratcher, I expected to lower the amount of insulin to a certain degree, but honestly thought it was increasing sensitivity while recovering, plus a honeymoon!

That does seem quite a small total amount of insulin. Having said that, I have Late Onset Type 1 and sometimes I need as little insulin (or even less) as you - and sometimes I need much more, depending upon various factors, some of which are unknown.

 

[Rory Delap's Long Throw]

That does seem quite a small total amount of insulin. Having said that, I have Late Onset Type 1 and sometimes I need as little insulin (or even less) as you - and sometimes I need much more, depending upon various factors, some of which are unknown.

It's a puzzle really. I have reduced carb intake, but nothing major. From about 390g to 270g per day

 

[everydayupsanddowns]

Interestingly the c-peptide test was taken fasted, while I was admitted to A+E back in March...

Probably a case of antibody negative type 1 which is constitutes roughly 5% of those with type 1.'

A bit of a head scratcher, I expected to lower the amount of insulin to a certain degree, but honestly thought it was increasing sensitivity while recovering, plus a honeymoon!

A head scratcher and no mistake!

I wonder what cPep value you may be able to generate if not fasting? We've had a few 'idiopathic' members join over the years, which this abstract seems to suggest may be the same thing as you have.

Autoantibody-Negative Type 1 Diabetes: A Neglected Subtype - PubMed

Up to 15% of individuals with a clinical phenotype of type 1 diabetes (T1D) do not have evidence of seropositivity for pancreatic islet autoantibodies. On this basis, they are classified as nonimmune or idiopathic, and remain an understudied population, as they are excluded from T1D...

pubmed.ncbi.nlm.nih.gov

 

[Inka]

I’d be interested in a non-fasting C Peptide too. But, with a total daily dose of 6 units, I don’t think you’re alone. As I said, the lady I mentioned was on 4 or 6 units (she just took basal but I reckon some of that basal was dealing with her meals). I can totally understand why you’re musing about it though. It does seem counter-intuitive.

 

[Rory Delap's Long Throw]

A head scratcher and no mistake!

I wonder what cPep value you may be able to generate if not fasting? We've had a few 'idiopathic' members join over the years, which this abstract seems to suggest may be the same thing as you have.

Autoantibody-Negative Type 1 Diabetes: A Neglected Subtype - PubMed

Up to 15% of individuals with a clinical phenotype of type 1 diabetes (T1D) do not have evidence of seropositivity for pancreatic islet autoantibodies. On this basis, they are classified as nonimmune or idiopathic, and remain an understudied population, as they are excluded from T1D...

pubmed.ncbi.nlm.nih.gov

I’d be interested in a non-fasting C Peptide too. But, with a total daily dose of 6 units, I don’t think you’re alone. As I said, the lady I mentioned was on 4 or 6 units (she just took basal but I reckon some of that basal was dealing with her meals). I can totally understand why you’re musing about it though. It does seem counter-intuitive.

Thanks both - funny I did come across that article while searching, but led to more questions! At least I know there are others out there.

It feels very counter intuitive just to have basal cover lunch and dinner, but it seems to work (at least for now). My next appointment with the team is Easter time, so will put together some questions.

Thanks for the replies!