Really confused

[Dave Metric]

Hi All,

In December 2024 I started to feel unwell and went to by GP. Had lots of tests for assorted abdominal cancers and over Christmas and New Year started to get really thirsty (6+ litres a day). Liver and bowel cancer was ruled out although I had a slightly fatty liver. Bought a BGM and had fasting BG of 20-odd and after meals was 33+ when the meter topped out. Was fast tracked to rule out pancreatic cancer. Ended up being admitted for DKA and put on insulin. CT revealed atrophy of the pancreas. Endocrinologist says I've got type 2, hepato-biliary surgeon says I've got type 3c so I don't know where I stand. currently running 85%-90% on 60 units of long acting a day with occasional boluses of fast acting. Managed to get HBa1c from 97 in Feb 25 to 41 in Jan 26. Because I've been ok at managing my time in range, I've not been given much other advice. I've put 7-8kg on in the last year. I'm really not sure where to go for advice. I've moved house and having to be treated as a new referral for my local diabetes service which currently has a 21 week wait for first appointments. The weight gain is really affecting my mobility as I'm a double below knee amputee (trauma related). I'm currently suffering a lot of bloating and nausea. Relatively small meals feel like a large Christmas dinner!

All the type 2 advice I can find is diet related and type3c advice is really hard to find.

Any pointers warmly welcomed

 

[Antje77]

Ended up being admitted for DKA and put on insulin. CT revealed atrophy of the pancreas. Endocrinologist says I've got type 2, hepato-biliary surgeon says I've got type 3c

Type 3C is diabetes caused by damage to the pancreas, which seems obvious in your case.
Somrtimes HCPs class it as T1 or T2 because they think this is easier for the patient to understand, which makes no sense to me.

I'm currently suffering a lot of bloating and nausea. Relatively small meals feel like a large Christmas dinner!

Are you on digestive enzymes like Creon?
Exocrine pancreatic insufficiency (EPI) is very common in T3C.
In T1, it's mainly the beta cells that are affected (because of an autoimmune attack), those are the ones that produce insulin.
In T3C it can be the whole pancreas is affected, and the pancreas produces enzymes for digestion.

Have you found the T3C sub forum already? https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

 

[Dave Metric]

Type 3C is diabetes caused by damage to the pancreas, which seems obvious in your case.
Somrtimes HCPs class it as T1 or T2 because they think this is easier for the patient to understand, which makes no sense to me.

Are you on digestive enzymes like Creon?
Exocrine pancreatic insufficiency (EPI) is very common in T3C.
In T1, it's mainly the beta cells that are affected (because of an autoimmune attack), those are the ones that produce insulin.
In T3C it can be the whole pancreas is affected, and the pancreas produces enzymes for digestion.

Have you found the T3C sub forum already? https://www.diabetes.co.uk/forum/category/type-3c-pancreatic-diabetes.73/

Thanks for this. Managed to get a few tests done. I'm negative for insulin antibodies (IgG) have high c-peptides when tested with high glucose. I'm still waiting for GAD and Islet Cell test results. I've been unable to find anywhere that does IA2 and Zn8T tests. I'm currently having to go private as my GP referred me to the local endocrinology team and the first appointment they can offer me is in mid-November 2026!

I'm not on Creon as I can't find anyone willing to prescribe it yet.

 

[Antje77]

Thanks for this. Managed to get a few tests done. I'm negative for insulin antibodies (IgG) have high c-peptides when tested with high glucose.

Which means you do not have an absolute insulin deficiency (your pancreas seems to be able to produce insulin, even in high quantities).
Your BG going high while testing high on C-peptides means you didn't produce the amount of insulin you needed to keep your BG in check, a relative insulin deficiency, which is common in T2.
High C-peptide is not usually seen in T1 (including LADA) or in T3C, those types are caused by the inability of the pancreas to produce (enough) insulin. High insulin production is often seen in T2.

Managed to get HBa1c from 97 in Feb 25 to 41 in Jan 26. Because I've been ok at managing my time in range, I've not been given much other advice.

This sounds like you're doing very well, diabetes wise!

The weight gain is really affecting my mobility as I'm a double below knee amputee (trauma related). I'm currently suffering a lot of bloating and nausea. Relatively small meals feel like a large Christmas dinner!

Have you considered the bloating may be unrelated to your diabetes?

 

[Dave Metric]

I've finally made some progress after requesting all my notes from the hospital. I saw all the results from the tests I had including some they hadn't told me they'd done including one I've been trying to get done privately for over a month! It's definitely not type ! as all the antibody tests rule that out. It's looking much more like type 2 as my FET has a result of 200 ug/g so right on the boundary for pancreatic insufficiency.

I've been referred to my local endocrinology team, however the appointment is not until mid-November! That'll be over 19 months since I've last seen a diabetes team.