C-Peptide results

[Eternal422]

Just got my C-Peptide and antibodies results - C-Peptide is 642 and antibodies are negative.

So now I feel totally lost. Not sure how the hospital will now treat me. I have been on insulin for around 17 years, MDI Levemir and Novorapid. Before insulin I tried Metformin and Glibenclamide which had no effect on bringing down my HbA1c at all. In fact it went up.

C-Peptide of 642 shows some endogenous insulin production but I believe T2 would exhibit much higher C-Peptide levels than this?

My DSN said she would discuss with the consultant and they would “come up with a plan”. She has just further emailed me to say “There are lots of things to consider” and “it may be that we can look at modifications of your regime but I will be in touch as soon as I hear from {my consultant} rather than you wait for your appointment”.

I’m really hoping to stay purely on insulin as everything is stable at the moment. I just feel lost and uncertain about everything. I assume my next consultant appointment (probably not for a couple of months) will be a chance to discuss treatment plans further.

 

[rebrascora]

That must be really unsettling. Hope you hear back soon with some reassuring news, as I know this will be playing on your mind as to what will happen going forward.

I have an appointment next Tues (24th!) with a new consultant and I am swinging between dreading it and being quite positive and confident... depending on my mental state at any point in time. Thankfully my GAD was very positive with a borderline normal-low C-pep so hopefully I am not going to go through this scenario but you just don't know when a new person takes over the department. I wonder if there is some incentive for consultants to reduce the number of Type1s on their books, maybe to limit the access to pumps. I know that sounds cynical but a few members have been put in this situation recently and it coincides with a peak of interest in getting pumps, especially since all of the publicity about HCL, although personally I have no interest in a pump. I also think the clinics are simply overwhelmed with cases and perhaps the consultants are looking to find people they can move off their books, to alleviate some of the strain on their department. If this is the case I am probably happy to manage on my own with 6 monthly checks with the nurse at the practice. I really just need the blood tests and such and to be honest now that I have Libre and TIR, I wonder if HbA1c is even relevant but having lipids done once a year is good.

Keeping my fingers crossed for you.

 

[Lucyr]

Just got my C-Peptide and antibodies results - C-Peptide is 642 and antibodies are negative.

That likely means you’ve been misdiagnosed as T1 and are actually T2. Was the test stinulated (high bg at the time) or non stimulated (normal bg at the time)?

Even if it was stimulated it’s in the T2 range (over 600 indicates T2), and with negative antibodies on top, you can perhaps chat to the DSN about trialling non insulin medications if you want to go that way? Or staying on insulin but maybe reclassifying as T2 if you don’t want to come off insulin.

C-Peptide Exeter Clinical Laboratory International

www.exeterlaboratory.com

 

[Lucyr]

I wonder if there is some incentive for consultants to reduce the number of Type1s on their books, maybe to limit the access to pumps.

I absolutely do think that the surge in cpeptide tests is to make sure those classes as T1 definitely are T1, because of the need to rollout pumps and HCL. If you can get a few people who are actually T2 but misdiagnosed as T1 reclassified then that’s less people to mistakenly have to give a pump to and less people to have to train.

It’s in the individuals best interests too I think though as new t2 meds come along all the time so just because you tried one or two t2 tablets in the past and they didn’t work for you doesn’t mean that the newer t2 treatments won’t work for you.

 

[Eternal422]

Apparently the consultant wants to take me off insulin and onto Metformin and Dapagliflozin instead. I feel really unsure about this. I appreciate that I’ve not tried Dapagliflozin before so it may work for me, but as everything is steady on the insulin I still would prefer to stay on that and feel that as a more or less “natural” drug it would be better than any potential side effects from the Metformin and Dapagliflozin.

@Lucyr - the C-Peptide test was stimulated, so 642 is only just into what could be considered T2.

I guess I feel uncertain that drugs alone would control my BG as well as the insulin has been doing and don’t feel up to a trial without insulin as the last thing I want is a higher HbA1c / less TIR and an increased risk of any complications.

What would you folks do? Politely decline coming off insulin for now and ask to stay on it? Or consider a trial on the drugs?

 

[Lucyr]

@Lucyr - the C-Peptide test was stimulated, so 642 is only just into what could be considered T2.

Only just into T2 is I think good as it’s high enough to confirm you do have t2 not t1, but not so crazy high as to suggest your insulin resistance is massive, so hopefully the dapagliflozin and metformin will be enough.

642 is much too high to be likely T1 though especially after all these years. Mine was around 230 with bg of 18 ish and one positive antibody and that cpeptide was high enough cpeptide for it to be debatable whether I could be treated as t1.

Managing your t2 with tablets could be much easier than with insulin so if you wanted to you could give it a try. If you don’t like it or it doesn’t work you can always go back to insulin. I’d stick a libre request in first so you can use that to monitor for the first month as you should lose libre when you stop insulin.

 

[Eternal422]

Thanks @Lucyr, I’ve been on Libre for a couple of years now and the hospital are happy for me to stay on it during any transition to drugs so as to be able to keep a close eye on things.

I’m still undecided, I guess I don’t have confidence my body will deal with carbs without injecting insulin and at the moment not willing to play with my health as an experiment. Not sure how the hospital will take it and whether than can insist I come off insulin or not?

 

[Tdm]

May it not be worth a try? Just for a short while? It could make life easier, if tablets worked for you, and if not, you can pop back onto insulin.

 

[Tdm]

I wouln'd have thought they'd insist you drop insulin unless the tablets work better for you...I'd discuss how you feel with them, but i would have thought both you and the hcps want the same...good control

 

[Lucyr]

I’m still undecided, I guess I don’t have confidence my body will deal with carbs without injecting insulin and at the moment not willing to play with my health as an experiment.

The stimulated cpeptide test proves your body makes sufficient insulin in response to carbs though, and the tablets would help with your body’s response to that insulin (metformin), and help filter out excess glucose (dapagliflozin). If you wanted your body to produce higher amounts of insulin you’d want a tablet like gliclazide or januvia on top but makes sense to try 2 oral medications before adding the third.

 

[PattiEvans]

What an unfortunate place to be in @Eternal422 . Frankly I'd be terrified to come off insulin if I were in your place as you are so well controlled on it. I might be quoting "if it ain't broke don't fix it". When my consultant did the tests on me 8.5 years after diagnosis he said that it was unlikely any antibodies would be left after all that time.

 

[Eternal422]

What an unfortunate place to be in

Yes. As you can imagine my mind is churning over and over, doubt I’ll sleep well tonight

My wife is very rational about it all and suggested I get an appointment with the DSN to talk it all over, who has been so helpful so far.

Maybe drugs will work, although last time Metformin didn’t work for me but I can see that Dapagliflozin could work for me in reducing high BGs. Just not sure that if the Metformin isn’t helping my body use glucose, what good would that drug therapy do? But maybe that’s when a third drug to stimulate the pancreas to make more insulin would be used? Surely it would mean I wouldn’t have enough glucose going into cells and therefore the body would start breaking down fat cells for energy, giving rise to ketones? Anyway, lots to discuss with my DSN before making any changes. The consultant did say a “trial” of using the drugs instead of insulin, which I take to mean I could go back on insulin if things didn’t work out.

It just feels all a bit like “here we go again” when I started 17 years ago. Would a 3 month trial on the drugs be a problem if my BG shot up for that period?

 

[dannybgoode]

Sorry to hear this. It sounds a very irritating position to be in - especially having got everything nice and stable for so many years.

Can you push back on the decision to stop insulin on that basis? Or, would it be a relief in some ways to not need to worry about it anymore?

Regarding the c-peptide test and results itself this is something I've been doing a lot of reading up on given my current position.

My understanding is that 642 stimulated is right in the 'ambiguous' range and wouldn't be used to firmly diagnose one way or the other and if it hadn't already been done, the antibody test would be run and that gives the definitive answer.

A 'normal' fully functioning stimulated c-peptide result is in the low to mid thousands.

I think the fact your antibody test is negative is therefore the decider here but yes, if I were in your position and wanted to stay on insulin I'd push quite hard for that.

 

[rebrascora]

I am trying to put myself in your situation and figure out how I would feel. I can totally understand the idea of coming off insulin is frightening. After all it is kind of drummed into us that we need it in order to live/survive. If your body is able to produce enough insulin then why haven't you been hypoing lots with injected insulin or have you? Do your beta cells just lie back and let the injected insulin do their job and only kick into action if levels get too high? Have you tried following a low carb way of eating? I have to inject for protein release 2-3 hours after meals if I don't have enough carbs, so I guess my remaining beta cells, if I have any, can't even manage to deal with that slower rise.

In some respects it would be quite interesting to have a C-pep again and see how it compares to when I was first diagnosed. My insulin needs have increased 3 fold since then so I am assuming my insulin production must have similarly decreased but whether bodies follow that sort of logic i don't know.
It would be a new challenge to try managing it without insulin and I quite like experiments and challenges as long as there is a safety net..... so maybe have some protocol agreement where you keep your insulin and do a correction if levels hit say 15mmols, but otherwise don't use it. I do think it might be quite nice not to have to carb count and inject and not have to always consider if you have enough hypo treatments with you and not have to renew your driving licence every 3 years etc. I would definitely want a set period for the trial and have reassurances that you have support and the option to go back to insulin or to use it if you need to. I would want to know if it was going to be a graded reduction in both or perhaps retain basal for the time being and just drop meal time insulin initially and see how that goes, or perhaps drop basal altogether and just keep fast acting for meals and corrections.

Anyway, those are just some of my thoughts on things I would consider and want to discuss with them in your situation. Maybe in a few days time I will be in a similar quandary!

 

[Eternal422]

Can you push back on the decision to stop insulin on that basis? Or, would it be a relief in some ways to not need to worry about it anymore?

In some ways, not having to carb count, inject, make corrections, etc., etc. may be nice. As long as I could continue to eat whatever without worrying (as I do now as I just give myself enough insulin to cover the carbs).

It sounds like the drugs could just be a trial and that insulin would still be an option. I sort of think like @PattiEvans, if it ain’t broke, don’t fix it!

 

[dannybgoode]

if it ain’t broke, don’t fix it!

I get that. As you know I'm nervous about the idea of stopping insulin and trying tablets and I've only been going a few days.

Of course my situation is a little reversed as they're at least doing all the tests upfront.

 

[Eternal422]

If your body is able to produce enough insulin then why haven't you been hypoing lots with injected insulin or have you?

Not really, hypos seem to only be tied to when I take too much insulin, normally meals cause a spike and the insulin brings the BG back down to the pre-meal levels. Such as today with my dinner at 17:00 (although I did take the NR roughly at the same time as eating!)



@rebrascora - I like your suggestion of protocols and a safety net during a drug trial, and also the reassurance of being able to go back to insulin for whatever reason. I’ll definitely discuss that with my DSN. Thank you so much for your thoughts, I really appreciate your help!

 

[Inka]

That’s a substantial amount of insulin after all these years @Eternal422 Unless they think you might have MODY, Type 2 seems a reasonable assumption. In your position, I’d want to stop the insulin for a trial period of 3 or 6 months and see exactly what my body was doing. As said, if nothing else works, you can always go back on insulin.

 

[Eternal422]

@Inka , one of the DSNs did tell me to lookup MODY a couple of years ago when I moved to this hospital. However I thought this only becomes apparent under 25 years? I was diagnosed at age 42 so I didn’t think it applied to me?

I didn’t think 643 is a substantial amount? I thought T2 insulin levels would be much higher? Unless as it is years after diagnosis my levels have dropped? I appreciate that T1 some years after diagnosis would be more in the 200 or less range?

 

[Inka]

I had my C Peptide tested around 25 years after diagnosis @Eternal422 and it was less than 10. Most Type 1s would have minimal production after 17 years. My consultant was surprised mine was so ‘high’ (!).

I don’t know much about MODY but people can be misdiagnosed as Type 1 or Type 2 for years but actually have MODY. Do you have any close relatives with diabetes?