Guess the C Peptide results

[Lucyr]

Had the hospital appointment (well phone call) this week. It was the doctor I don’t really get on with that called.

Asked about type. He said whilst my result of 265 is low it’s not low enough after 15 years for type 1 who would be producing more like no insulin. He said as I inject insulin that would suppress my own insulin. I disagreed with that since my a1c is 65 (was 70 when i had cpeptide test) and I had lunch with no bolus before the cpeptide test and a bg around 18 at the time of the test, so clearly I wasn’t tested in a state of “perfect bgs suppressing insulin”. No explanation for why no T2 meds worked for me, other than my weight causing the diabetes. I know my weight is much too high but struggle to reduce it.

Result was T2 and no to sensors being prescribed, they’re only available to T1. I need to work on my weight, stopped the orlistat as didn’t lose 5% on it. He will discuss my questions on type with consultant and confirm t2 in the letter.

Disappointed is an understatement.

 

[rebrascora]

Oh Lucy! I am so sorry you got that doctor! I am really disappointed for you too. He sounds like he is discriminating against you because of your weight..... or at least basing his decision largely on your weight, which is so unfair! To wait so many years for a C-pep test and then get an unsympathetic and unknowledgeable doctor to interpret the results is such a locl om the teeth. @Amity Island just posted a thread the other day about research which suggested that many Type 1s retain some insulin production for many years after diagnosis and that it may even be that beta cells are constantly being produced and killed off. I don't know whether you saw that post but it ties in with research done in the USA where people with 40 and 50 years of Type 1 were still found to be producing some insulin, but not enough to survive.

I am really not sure what to suggest other than perhaps a second opinion but sending (((HUGS))) because I can imagine how gutted you will be. It isn't even just about the Libre but the second class treatment you have had. No education, the lack of empathy, etc. It is just not fair and I really feel for you.

 

[Lucyr]

I guess the consultant is the second opinion but I won’t be involved in that, he’ll confirm the second opinion in the letter

 

[Lucyr]

In my grumpiness the other day I forgot to account for the second opinion being from the consultant I trust more.

I had a phone call today…..

After discussion with the consultant, it was decided that my type of diabetes is unclear and doesn’t really fit with standard T1 or T2, as the cpeptide was quite low at 265, and the history of T2 meds not working.

So the plan is, an antibody test to decide which type it is. In the meantime, I can have libre and a DSN should contact me with an appointment to train in using it

Now I have even more mixed feelings anyone had an antibody test 15 years after diagnosis??

 

[rebrascora]

Yay for your consultant!! So relieved that you have a second chance at this although antibodies can be inconclusive too unfortunately but yours could be positive. How stable have your insulin requirements been in recent years? Has there been a notable increase here and there which might indicate more beta cells being killed off? I imagine there was an increase when you were quite poorly last year and so fatigued with headaches all the time? Or have your doses been reasonable consistent over the past 15 years? Did you ask th consultant how likely it is that antibodies would still be positive after all this time?

I can understand you being on a roller coaster of emotions right now and not wanting your hopes potentially built up and then dashed again, but I really didn't think the consultant would go against a member of his team on this so I think it is really good that he is keeping an open mind and doing more tests. It sounds like he is in your corner but just needs a bit of empirical data from tests to support his decision to overrule the doctor's decision.

Really keeping my fingers crossed for you. You have had a tough ride with this from what I have read, as sadly many other Type 2s experience. The system is not fair but hopefully your situation is going to be rectified soon. Wishing you l;ots of luck! When will they do the test?

 

[Tdm]

In my grumpiness the other day I forgot to account for the second opinion being from the consultant I trust more.

I had a phone call today…..

After discussion with the consultant, it was decided that my type of diabetes is unclear and doesn’t really fit with standard T1 or T2, as the cpeptide was quite low at 265, and the history of T2 meds not working.

So the plan is, an antibody test to decide which type it is. In the meantime, I can have libre and a DSN should contact me with an appointment to train in using it

Now I have even more mixed feelings anyone had an antibody test 15 years after diagnosis??

Yes! You have libre!

 

[Lucyr]

How stable have your insulin requirements been in recent years? Has there been a notable increase here and there which might indicate more beta cells being killed off? I imagine there was an increase when you were quite poorly last year and so fatigued with headaches all the time? Or have your doses been reasonable consistent over the past 15 years? Did you ask th consultant how likely it is that antibodies would still be positive after all this time?

My insulin requirements have had step changes both up and down over time. There’s not a consistent trend of needing more insulin over time, it has generally headed that way but there’s been distinct reductions in insulin requirements for short periods of time along the way. I do also have high white cells and the cause of this hasn’t been found, I just have them rechecked regularly.

Personally, I’d put my money on “some other rare type but not t1 or t2”. I didn’t ask too many questions as it was the same person as last week I was speaking too, and I forgot to ask the key questions of “how will I get the results”

 

[Lucyr]

Yes! You have libre!

Don’t actually have one yet, but should do sometime in the next couple of months. Didn’t see that coming!

 

[EmmaL76]

Oh Lucy I’m am so pleased, when I read your post the other day I desperately wanted to say push for the antibody testing but I know how draining it can become so didn’t want to upset you. So next will be the guess the antibody result competition !!

 

[Lucyr]

Oh Lucy I’m am so pleased, when I read your post the other day I desperately wanted to say push for the antibody testing but I know how draining it can become so didn’t want to upset you. So next will be the guess the antibody result competition !!

I need to figure out how I arrange the test and then how i find out the antibody test results before you lot get to guess them! Forgot to ask those questions

 

[trophywench]

Mmmmm - one step back, but all is not lost cos there's a stride forward, Lucy! Did he at least ask you how you felt about what he was telling you about your C-peptide?

 

[Eternal422]

anyone had an antibody test 15 years after diagnosis??

Mine was 8 years after diagnosis, but was inconclusive so they kept the T2 diagnosis but treated me just on a basal bonus insulin regime (so essentially as a T1 in all but name). Another 12 years on, a new diabetes centre and they changed the diagnosis to T1 based on how I respond to the amount of insulin I use to maintain in range BG figures. Sorry, probably doesn’t help you much. Hopefully they’ll let you keep the libre anyway and maybe you’ll have the same result as me.

 

[Lucyr]

Did he at least ask you how you felt about what he was telling you about your C-peptide?

Nope!

Mine was 8 years after diagnosis, but was inconclusive

Is there a cutoff like with the cpeptide then, that you need above a certain level of antibodies to be T1? I’d been thinking of it as either positive or negative, didn’t realise this could be inconclusive too!

 

[Eternal422]

Is there a cutoff like with the cpeptide then, that you need above a certain level of antibodies to be T1? I’d been thinking of it as either positive or negative, didn’t realise this could be inconclusive too!

To be honest I don’t know. However I have heard that the results have to be “interpreted” and I was told that my results were inconclusive which they weren’t surprised given the amount of time since original symptoms/ diagnosis.

 

[EmmaL76]

Nope!

Is there a cutoff like with the cpeptide then, that you need above a certain level of antibodies to be T1? I’d been thinking of it as either positive or negative, didn’t realise this could be inconclusive too!

With antigad I was told over 11 but some say it needs to be under 5. Although originally I was told I was negative, then another doctor said borderline and another said it was positive. Mine was 55 in 2020 and 51 in 2022

 

[trophywench]

Miserable git.
That's what I was going to say about the antibodies test too - I do know in bog standard T1 presentation the antibody tests do become more inconclusive the longer it is since you've been treated as T1. However since I've never to my knowledge had either tested either at the outset or since that is about all I do know.

Think they've been able to test for antibodies a fair bit longer than they have C-peptide though, cos it's not that long since that could only be tested at Exeter.

 

[EmmaL76]

I need to figure out how I arrange the test and then how i find out the antibody test results before you lot get to guess them! Forgot to ask those questions

My own doctor did mine, they had to order a couple of special blood vial bottles they came within a couple of days and then I waited around 2 weeks for the results

 

[Inka]

I had an antibodies test around 25 years after diagnosis @Lucyr It showed Type 1 antibodies all those years after my diagnosis.

 

[Lucyr]

My own doctor did mine, they had to order a couple of special blood vial bottles they came within a couple of days and then I waited around 2 weeks for the results

Ill be having them at the hospital so hopefully they’ll have any special bottles needed in already. I’ll ring tomorrow and book an appointment, probably be 6 months before I get the results if anything like the last ones least I know that this time though.

I had an antibodies test around 25 years after diagnosis @Lucyr It showed Type 1 antibodies all those years after my diagnosis.

Oh that’s surprising, good to know it’s possible!

 

[AndBreathe]

I guess the consultant is the second opinion but I won’t be involved in that, he’ll confirm the second opinion in the letter

I would not accept that as a second opinion.

You can ask for a referral elsewhere - in your same area or outside of your Trust. You can request a named referral, meaning you will see that person, not anyone else.

Have you considered engaging with your GP for a named referral elsewhere? Maybe do some research into who you want to see. There is no timeframe on any of this, so likely best wait to see the letter that arrives - just in case there are any surprises?