C-peptide after 10yrs meaning? Definitely not Type 1 Diabetic?

[Dunne79]

Hello,
I hope you are all well. Thank you for reading my post and any advice you could give really will be most appreciated.

I posted a while back about being possible wrongly diagnosed as T1D ten years ago.
I finally got all my test results back but just recieved them through the post with a note saying C-peptides present after ten years.

I can’t seem to get hold of anyone who will discuss this with me either in my GP or with the Diabetes centre where I was normally reviewed.

im still off insulin (previously humalog and humalin), previous to coming off insulin had always had 4A-5 hypos per week. None since stopping insulin.

I’ve got two A4 pages of test results and have googled to find out their meaning but can’t seem to find a definitive answer on the c-peptides. I guesss I’m just after something concrete or to know whether I’m T1D or not?

Thanks I’m advance.

D Xx

 

[Dunne79]

Just to note: I don’t think I worded the above quote right. I know I can’t get any concrete answer either way on here but your advice/thoughts would be really helpful to support me in how I get my Diabetic consultant to stop fobbing me off by dazzling me with pages of blood test results and no accompanying explanation.
Reading through this forum over the years it seems the expertise lies in amongst those of us with experience (apart from me of course ).
Thanks again. D
X

 

[EllieM]

I finally got all my test results back but just recieved them through the post with a note saying C-peptides present after ten years.

I have to be careful what I say because we aren't allowed to diagnose on the forum but I don't think it breaks the rules to say that some T1s still produce some insulin after ten years, it's a question of how much you are producing.
https://www.webmd.com/diabetes/news...e-1-diabetes-still-produce-insulin-study-says

What are your blood sugars like without the insulin? If it was me, that would be a very important question.

 

[EllieM]

And a really interesting article here about how a pilot study of cpeptide results in Scottish T1s is leading to a mass rollout of cpeptide testing for established T1s. Apparently a significant number had a different type of diabetes.

https://www.diabetesincontrol.com/preventing-misdiagnosis-between-type-1-and-type-2/

Of the 800 patients in the trial, roughly 40 had T2 and 10 monogenic (MODY) diabetes.

Hopefully your diabetic team get back to you soon and sort out what is happening.

 

[Daibell]

Hello,
I hope you are all well. Thank you for reading my post and any advice you could give really will be most appreciated.

I posted a while back about being possible wrongly diagnosed as T1D ten years ago.
I finally got all my test results back but just recieved them through the post with a note saying C-peptides present after ten years.

I can’t seem to get hold of anyone who will discuss this with me either in my GP or with the Diabetes centre where I was normally reviewed.

im still off insulin (previously humalog and humalin), previous to coming off insulin had always had 4A-5 hypos per week. None since stopping insulin.

I’ve got two A4 pages of test results and have googled to find out their meaning but can’t seem to find a definitive answer on the c-peptides. I guesss I’m just after something concrete or to know whether I’m T1D or not?

Thanks I’m advance.

D Xx

Hi. Worth pointing out that the C-Peptide test measures the level of that in the blood or urine. It's always present but tracks your body's insulin output. If the C-Pep is high it implies T2. If low it implies T1. It's the GAD test that measures if any GAD antibodies are present . If not then that aspect of auto-immune T1 isn't present.

 

[bulkbiker]

What are your blood sugars like without the insulin? If it was me, that would be a very important question.

@Dunne79

This is the question that needs answering.

 

[NicoleC1971]

I'd be fascinated to hear whatever conclusion you come too.
re the antibodies thiing, I would not expect them to be present after 10 years but would be amazed if as a type 1 you could have normal bgs on zero insulin.
The other question would be what are you eating carbs wise and has anything else changed for you e.g. body weight? blood pressure?
Another proxy for insulin resistance (type 2) is a high trig/low hdl ratio and fatty liver (ggt is thought to be the most helpful if that's on there) though neither are sufficient for a type 2 diagnosis. If you are curious have a look at the values over the years to see if that offers any further clues.
I do know that some type 1s have a slow decline in insulin levels but you seem to have at least maintained insulin levels or become more sensitive to your own insulin, which is suggestive of something else!

 

[Dunne79]

Hiya,

Wow, thank you so much for your time and for all your replies and advice. They've been extremely helpful and I feel more confident on what I should be asking from here.

I'll attach my test results here if you don't mind having a look.

My diagnosis as T1D, 24/12/2013, was completely unexpected. I hadn't been ill, no weight loss, I had been urinating a lot but have done so since before I can recall not doing so. I had been throwing up for a day non stop and felt very sick so went to A&E. saw the. Doctor, he suggested T1D. I had some blood tests. An hour later I was told I was t1D. Started insulin that day and have been ever since.
I was told that I had DKA. Discharged two days later on insulin.
Another two days later a doctor rang (id never seen him whilst there over Christmas) he explained that there'd been a mistake. I wasn't diabetic. Stop insulin immediately. Two days later I went for a follow up and was told that doctors who'd told me I wasn't diabetic was a locum; was wrong. I was diabetic, told to take insulin immediately and do so for the rest of my life.
Over the last ten years I've been an inpatient approximately 40-50times with DKA. When in DKA I have high ketones and low Blood sugar. Last time ketones 8 and bm 1.6.
I have hypos almost daily. Wasn't aware this wasn't normal. Have always just been told I'm insulin sensitive and told how to respond.
My HBa1c always leads to the Doctors jokingly saying I'm Almost like a non diabetic it's so good.
Over last two years I've been begging for a second opinion but laughed at/dismissed/told it'd be a miracle/asked if I believed in magic/asked if I need counselling to help me accept my diagnosis.

Last year when the nurse agreed to look into it for me she was shocked at my notes. She seemed to think I'd never been tested for diabetes and couldn't find out why I'd been told I was.
Since I've had loads of tests to clarify but they always go missing.

Now I've been sent these results and can't get anyone to talk to me.
I've been off insulin since March 2022. I've gone from 4-5 hypos per week to not one in three and a half months (or since I stopped my insulin). It's the longest I've gone without being in hospital.
My bloods have been between 5 and 6.5. No highs, no lows.
No what I was told were panic attacks and put on anti anxiety medication. These have gone from 4-5 weekly till none.
I have no nightly hypos.
My blurred vision has gone
My dry mouth has gone.
My memory is improving and I feel like a different person. Like I've walked out of a fog.
I've been eating normally I.e. carbs the same as my family, not restricted anything. I am able to exercise for more than 6-9 minutes without my Heart rate going above 140bpm and having a hypo.

Does this sound like a different kind of diabetes or not diabetic at all?

Thanks again for previous help and in advance for anyone who has a bit more of an idea than me (which isn't very much haha)

Xx

 

[Dunne79]

Hiya, thanks for replying to me. I really appreciate it.
My bloods have been between 5-6.5 since stopping insulin in March. I’ve gone from having almost daily hypos to none.

My insulin test results say:
Insulin 1.9 mU/L
Insulin si 11 pmol/l
Glucose 5.0 mmol/l 3.5 5.5
Ins/Glu Rat 0.4
C petite 275 pmol/l 190-990
CPep/ins RAT 34.1. 5.0-10.0
Glyc Hba1c - 33


If they’re any help

Xx

 

[Dunne79]

Hiya, thanks for replying to me. I really appreciate it.
My bloods have been between 5-6.5 since stopping insulin in March. I’ve gone from having almost daily hypos to none.

My insulin test results say:
Insulin 1.9 mU/L
Insulin si 11 pmol/l
Glucose 5.0 mmol/l 3.5 5.5
Ins/Glu Rat 0.4
C petite 275 pmol/l 190-990
CPep/ins RAT 34.1. 5.0-10.0
Glyc Hba1c - 33


If they’re any help

Xx

 

[Dunne79]

@Dunne79

This is the question that needs answering.

Hiya, thanks for replying to me. I really appreciate it.
My bloods have been between 5-6.5 since stopping insulin in March. I’ve gone from having almost daily hypos to none.

My insulin test results say:
Insulin 1.9 mU/L
Insulin si 11 pmol/l
Glucose 5.0 mmol/l 3.5 5.5
Ins/Glu Rat 0.4
C petite 275 pmol/l 190-990
CPep/ins RAT 34.1. 5.0-10.0
Glyc Hba1c - 33


If they’re any help

Xx

 

[Dunne79]

It won’t let me upload a photo of test results Xx

 

[Fenn]

Hi, you haven’t had insulin for 3 months and have perfect blood sugar numbers? Sounds like there’s no rush to find out apart from curiosity, your numbers are great, you are not taking meds you don’t need, life is good.

That’s not to say, if you have been through this by mistake, that is criminally sad and not fair. I would be freaking out and refusing to leave the surgery until someone explains this. Awful.