Hi folks, possible T3c just saying hello

[Mr Happymoose]

Hi folks, just making my first post and introducing myself.

I have routine blood tests every three months (I've been on methotrexate for the last 12 years or so for a combination of Sarcoidosis and IgG4-related disease) as well as having some extra ones recently for a blood pressure issue. I got the phone call from the diabetic nurse last Tuesday informing me that the results had been passed to her as well and that I was diabetic. From what she was saying, they should have been passed to her over a year ago, but that's going to be another conversation.

I have my first appointment with the nurse next week so I've been doing some research and if the nurse doesn't, I'll be bringing up type 3c as six years ago I had a chunk of my pancreas removed when I had Whipple surgery for a mis-diagnosed pancreatic cancer (Unfortunately the mis-diagnosis wasn't spotted until after the surgery) so if there's anything I need to know before the appointment, do please let me know. (That's also why my diabetes type and treatment are currently set to other)

The nurse freely admitted that she'd never come across a case like mine before and that she needed to get some more advice on my multiple weird and freaky conditions so I'm taking that as a good sign. Past experience means I just don't take that level of honesty for granted any more.

 

[EllieM]

Hi @Mr Happymoose and welcome to the DCUK forums.

Unfortunately most DNs and GPs assume that everyone is T2 (just because 90% of people are) and while most have at least heard of T1 I wouldn't guarantee that your nurse knows about T3c.

In your position, if I thought T3c was a possibility, I would be pushing for a cpeptide test (measures how much insulin you are producing) and a referral to an endocrinologist.

Good luck with your appointment and once more welcome.

 

[Mr Happymoose]

Thanks @EllieM,

I've become aware of the rareness of 3c and the fact that some surgery nurses haven't even heard of it. Since being diagnosed with Sarcoidosis 15 years ago, I have learnt not to let HCP's push me around so I can be quite firm with them when I need to. Luckily, most of the staff at my GP surgery have come to accept that I probably know more about my conditions than they do so hopefully the nurse will listen. As I said she has at least been open in acknowledging that my case is unusual to say the least and she's looking for more advice. On the first phone call, she seems to think that I probably wont need a referral to the hospital team and I don't necessarily agree with that but on the first appointment at least I'll give her the benefit of the doubt. If I don't like what I hear, I have other hospital connections that would get me referred if I need to take matters in to my own hands.

I'd not come across a cpeptide test in my research though so that's definitely one to add to the list of questions I'll be taking with me. The links in your sig have really helped with that by the way.

 

[Antje77]

Looks like you're going to be well prepared.
I second getting a referral to an endo and a C-peptide test, especially with other complex conditions in the mix.

You'll also want to know if you need creon, people who have T3C often don't make enough digestive enzymes themselves.

 

[Mr Happymoose]

Looks like you're going to be well prepared.
I second getting a referral to an endo and a C-peptide test, especially with other complex conditions in the mix.

You'll also want to know if you need creon, people who have T3C often don't make enough digestive enzymes themselves.

I'm already taking 4 to 6 creon 25000 with a snack, 6 to 8 with a light meal and 8 to 10 with a normal meal after having had whipple surgery 6 years ago and having part of my pancreas removed.