C pep low antibodies negative - help

[Pjs191184]

Hi
I was hospitalised in march with DKA, and then my diabetes journey begun.

The team are struggling to diagnose me (almost 6 months later). My c pep is very low (one nurse said the lowest she’s ever seen) but my anti body tests are all negative!

Has anyone else had this? What did it mean for them?

 

[Pjs191184]

Hi
I was hospitalised in march with DKA, and then my diabetes journey begun.

The team are struggling to diagnose me (almost 6 months later). My c pep is very low (one nurse said the lowest she’s ever seen) but my anti body tests are all negative!

Has anyone else had this? What did it mean for them?

I should add I’m very insulin dependent! I’m about 2.5 units for 10g of carbs, with at the moment 27 units of tresiba but need to increase tomorrow again

 

[Inka]

Welcome @Pjs191184 🙂 If you have insulin resistance, then that’s linked with Type 2 (although not exclusively). Many Type 2s make too much insulin, but some can’t make enough for their needs so have a lower C Peptide. Do you know what number your C Peptide was?

Do you have any close family members with diabetes?

 

[Pjs191184]

Hey!! Thanks for replying

44 pmol non-fasting! Was told to force my sugars to be over 10 mmol for the test.

My dad and grandma type 2, my mums brother is insulin dependent.

Yeah I think it’s the DKA too that’s making them take so long with my diagnosis. I have a libre at the moment nhs funded but I’m so worried them taking it away if type 1 as I can’t even look at food without my sugars going mental!

 

[harbottle]

It's possible with T2.

During pre-diabetes, the level of c-peptide may be elevated due to the insulin resistance causing excessive secretion, but it tends to decrease as the beta-cell dysfunction progresses over the duration of the disease.

 

[Pjs191184]

It's possible with T2.

During pre-diabetes, the level of c-peptide may be elevated due to the insulin resistance causing excessive secretion, but it tends to decrease as the beta-cell dysfunction progresses over the duration of the disease.

Just strange that the onset was all of a sudden, there has been no progression with me… I’ve been tested due to pregnancies

 

[Inka]

Just strange that the onset was all of a sudden, there has been no progression with me… I’ve been tested due to pregnancies

Occasionally a virus can damage the beta cells @Pjs191184 It might be something like that. Also, with a lot of diabetes very close to you, has MODY been ruled out? It’s a genetic form of diabetes.

 

[Pjs191184]

Occasionally a virus can damage the beta cells @Pjs191184 It might be something like that. Also, with a lot of diabetes very close to you, has MODY been ruled out? It’s a genetic form of diabetes.

Interesting… I haven’t heard of MODY but will ask the nurses when I talk to them next week. So much to consider

 

[harbottle]

Yes, what @Inka says is true. There are different 'phenotypes' of T2, not all people with T2 have insulin resistance and some just lose beta-cell function and no one really knows why. I think they used to call it 'Jamaican diabetes' as it was common in people from there. (I work with someone in the same boat.)

 

[Pjs191184]

Yes, what @Inka says is true. There are different 'phenotypes' of T2, not all people with T2 have insulin resistance and some just lose beta-cell function and no one really knows why. I think they used to call it 'Jamaican diabetes' as it was common in people from there. (I work with someone in the same boat.)

Goodness me! So much to learn. It feels like the craziest more complex thing in the world! Is there anyway to get the Libre prescribed if you end up as type 2 or is it a flat no?!

 

[Lucyr]

I have a low cpeptide and positive antibodies but only slightly, so I don’t have an identifiable type. I’m recorded as t2.

You can possibly get libre as a t2 if you inject 2+ times a day. Criteria vary by area but in my area it’s if your dr/nurse has advised you to do 8+ fingerpricks a day and you’re also doing the 8+ fingerpricks.

 

[Pjs191184]

I have a low cpeptide and positive antibodies but only slightly, so I don’t have an identifiable type. I’m recorded as t2.

You can possibly get libre as a t2 if you inject 2+ times a day. Criteria vary by area but in my area it’s if your dr/nurse has advised you to do 8+ fingerpricks a day and you’re also doing the 8+ fingerpricks.

How interesting Lucy. I’m hoping I still get one but thank you that information. I will defo fight for it! I would be testing a million times a day!

How did you get diagnosed? With DKA? Do you mind me asking when you were diagnosed too?

 

[Lucyr]

How did you get diagnosed? With DKA? Do you mind me asking when you were diagnosed too?

I was diagnosed in 2009, I didn’t have DKA at diagnosis but have had it since as a side effect of empagliflozin. Used basal bolus insulin for a long time now.

 

[DaveB]

Yes, what @Inka says is true. There are different 'phenotypes' of T2, not all people with T2 have insulin resistance and some just lose beta-cell function and no one really knows why. I think they used to call it 'Jamaican diabetes' as it was common in people from there. (I work with someone in the same boat.)

Viruses are known to cause beta cell damage and my consultant said they have more diabetes diagnoses at the end of the Winter indicating the possibility of viruses. The medical profession can be very slow to change their view of diseases and I predict over the next few years we will have fewer people just dumped into 'T2' but into a 'Late onset T1 thru virus damage' group.

 

[harbottle]

Viruses are known to cause beta cell damage and my consultant said they have more diabetes diagnoses at the end of the Winter indicating the possibility of viruses. The medical profession can be very slow to change their view of diseases and I predict over the next few years we will have fewer people just dumped into 'T2' but into a 'Late onset T1 thru virus damage' group.

Yep, I think some viruses have been linked to apoptosis of beta cells.

I know someone who is in this boat - T2 for years, never overweight, no insulin resistance, but the medics don't know why - they suspect a virus, but there's no way to know. All tests for T1 were negative. Kept under control with medication and diet.

 

[Pjs191184]

Viruses are known to cause beta cell damage and my consultant said they have more diabetes diagnoses at the end of the Winter indicating the possibility of viruses. The medical profession can be very slow to change their view of diseases and I predict over the next few years we will have fewer people just dumped into 'T2' but into a 'Late onset T1 thru virus damage' group.

That’s so interesting! When I had gestational diabetes, I was diet controlled… then I did get poorly with flu and had to start levermir for overnight and then all of a sudden in Jan (just before I had the baby) had to bolus before meals)…. And then was fine after having the baby (so I thought) but DKA in March so clearly wasn’t fine!

 

[Pjs191184]

Yep, I think some viruses have been linked to apoptosis of beta cells.

I know someone who is in this boat - T2 for years, never overweight, no insulin resistance, but the medics don't know why - they suspect a virus, but there's no way to know. All tests for T1 were negative. Kept under control with medication and diet.

So interesting, I’m going to have a read up! You’re very knowledgeable!!!

 

[Drumbowie]

Hi
I was hospitalised in march with DKA, and then my diabetes journey begun.

The team are struggling to diagnose me (almost 6 months later). My c pep is very low (one nurse said the lowest she’s ever seen) but my anti body tests are all negative!

Has anyone else had this? What did it mean for them?

A small proportion of individuals are T1 with negative antibodies. My very recent diagnosis is not dissimilar to your journey. I was hospitalised by Gastroenterology but it was found that symptoms I was presenting were actually undiagnosed T1. BG >27 and Ketones >5. I was told I was very poorly. I am fit, 59 years old male and a healthy weight (BMI 23). I was on a great deal of insulin at the start but am now in the honeymoon period with no insulin. I will check and see what my C-pep was while I hospital. The honeymoon period is still a rollercoaster though. What was you Ketone number in hospital?

 

[Pjs191184]

A small proportion of individuals are T1 with negative antibodies. My very recent diagnosis is not dissimilar to your journey. I was hospitalised by Gastroenterology but it was found that symptoms I was presenting were actually undiagnosed T1. BG >27 and Ketones >5. I was told I was very poorly. I am fit, 59 years old male and a healthy weight (BMI 23). I was on a great deal of insulin at the start but am now in the honeymoon period with no insulin. I will check and see what my C-pep was while I hospital. The honeymoon period is still a rollercoaster though. What was you Ketone number in hospital?

BG 26.4 and ketones 4.9… almost the same as you! How long were you diagnosed and when did the honeymoon period begin?

What happens after? Have they diagnosed you as type 1 then? Yes please if you could that would be super interesting to see!! Thank you

 

[Drumbowie]

I was diagnosed in May and the clinical staff are comfortable that I am T1 despite being negative antibodies. Ketones are much more commonly found in those who have T1. The honeymoon period began about 6 weeks after the hospital discharge and my bolus and basal doses had been tapering down before stopping. That said it is not a honeymoon! I still count my carbs as too much will spike me and if I don’t watch my carb load when exercising my BG can crash. I have a Libre 2 CGM which helps me manage things well with the back up of my finger prick tests. I still need to carry hypo intervention stuff when I am out, not miss meals and eat well. There is no guide to how long the honeymoon period will last but if I start to see my average BG rising or my HB1AC elevated the time may coming for insulin injections to return. I can’t see what my C-pep was but I am seeing the Endocrinologist this week so will ask. Take care.