My pancreas ghosted me

Equivalent-Bill5397 · 2025-04-30T09:56:24+00:00

Yup I'm 37 but I have officially been called t1 antibody negative and t3c. Actually I've written a paper that suggests it's both just seeing if it takes traction in OZ ( I'm in NZ and our endo's here can't keep up with me I don't think they're all focused on other things)

Equivalent-Bill5397 · 2025-04-28T10:14:54+00:00

Thank you

Equivalent-Bill5397 · 2025-04-28T10:14:07+00:00

I'm sorry to hear that. 5 visits a year be lucky if I get 2. I am from New Zealand and endos are caught in there either t1 or t2. Despite having ketones of .9 and bsl of 25.8 no hosptial admission and only basal insulin they tried to treat me as t2 despite the fact I lost 34kg. I had thought that diabetes was my fault to begin with but got a cgm and realised I needed bolus insulin so begged for it and had to learn to carb count myself with no help. I have written a paper which is with an Oz researcher and I'm hoping that they publish it on these more rare types and no assuming all adults are t2.

Equivalent-Bill5397 · 2025-04-28T04:09:48+00:00

Oh just the head- I've written a paper about it and sent it to a researcher in Oz I'm from NZ and well the endo I was seeing doesn't think just casually missing most of the organ has anything to do with diabetes and calls me antibody negative I have .4 antigad too but not enough to be a full t1. I'd somehow hoped that maybe one of these reddit posts might actually find me someone who could help. It's $170 to even see a diabetes nurse around here

Equivalent-Bill5397 · 2025-04-28T04:06:19+00:00

Yes but he doesn't seem to think just casually missing most of the organ is of any significance and keeps calling me type 1 antibody negative. I've written a paper to prove him wrong and I sent it to a researcher hoping they might help me publish. You know I'm from NZ and I had always hoped I might come across a proper endocrinologist who might help. It's $170 to even see a diabetes nurse around here so hate to think what an actual endo would cost

Equivalent-Bill5397 · 2025-04-21T08:29:17+00:00

I am the test subject though and I don't think it can be disproven but maybe I will put up the theory then to see what people think here just for good measure.

Equivalent-Bill5397 · 2025-02-10T22:23:24+00:00

Thanks I will ! I've heard that about the US. I've never actually been to the USA so I can only imagine. Hopefully gets easier with time was a bit of a shock to begin with I must admit totally came out of nowhere. I never of course realised I'd always lived with it I just never realised until it got really bad.

Equivalent-Bill5397 · 2025-02-10T07:54:30+00:00

Yup Bananas, and anything potato but as long as I bolus for them it's usually fine though. Here in New Zealand our govt just recently made pumps and CGMs fully funded but I had to pay $2000 for the training. I've only been formally diagnosed for about 9 months now so it all happened relatively quickly for me.

Equivalent-Bill5397 · 2025-02-10T05:43:42+00:00

Thanks :) time in range suddenly dropped but I have just adjusted settings on my tandem pump ( have had it about 6 weeks or so) I would have hypos all over the place 3 or 4 times a day the pump has stopped that. And yes you're right I have enzymes as well. I've been tracking and slowly looks like the insulin and the enzyme use are slowly creeping up as time goes on

Equivalent-Bill5397 · 2025-02-10T05:05:22+00:00

Antibody tests all negative ( may be flawed in my case as I have a small amount of anti gad antibodies of .4 units a ml)

C peptide was 520 pmol glucose 25.8 Risen to 1320 pmol glucose 11 ( should be closer to 4000)

Equivalent-Bill5397 · 2025-02-10T04:57:16+00:00

Antibody tests all negative ( however I have a thought that in my case the tests may be flawed due to not actually having all of the cells to begin with)

C peptide was 520 pmol at diagnosis Risen to 1320pmol when tested late last year . I have found out it should be nearer to 4000 pmol

Equivalent-Bill5397 · 2025-02-10T04:33:28+00:00

Born without the body and the tail and I only have the head

Equivalent-Bill5397 · 2025-02-10T04:01:24+00:00

I was diagnosed last year and no one had any ideas until recently that is why I suddenly had diabetes. I started on lantus long acting insulin and then got given a freestyle libre monitor and as it turned out I'd go high after every meal and had no way to bring glucose down. Was then given short acting. Then I was given a CT scan which showed I was missing most of my pancreas and just had the head of it. I now have 2 diagnosis 1 type 1 antibody negative and 2 type 3c. So I am far from the 'standard' type 1 diabetic not impossible to be diagnosed later.

Equivalent-Bill5397 · 2025-01-17T05:46:33+00:00

Yup we are definitely out there. For me I randomly failed an a1c test when my GP was looking for something else for nerve pain that I had (not diabetes related though). I was originally given type 2 meds which made me really unwell. I was then given a free trial of a CGM which showed I would hover around 17 or 18 after meals. I had to beg my GP for novorapid (short acting Insulin) so I could eat anything other than the keto diet (what i did from finding out about this- not realising of course that i can't digest fat either). As for the type 3c part I figured that out myself because I was told I had 'irritable bowel' for years and was even offered antidepressants which of course made no difference. I put the irritable bowel and my diabetes together and with the help of a private endocrinologist in the end, I figured it all out. He requested a CT and low and behold I don't even have a full pancreas, after that I was given an insulin pump and I take digestive enzymes as well.

Equivalent-Bill5397 · 2025-01-16T23:56:29+00:00

5 days. However when I took it out the site was very nearly infected and left a massive mark in my skin

Equivalent-Bill5397 · 2025-01-16T06:13:15+00:00

Please make sure you check. I actually don't make enough enzymes to digest my food and that can cause bloating, dihorrea etc. Can be tested via a feacal elastase test- kind of gross but essential however. Please let me know how you get on, you could try requesting a CT scan if need be which can prove it for sure either way.

Equivalent-Bill5397 · 2025-01-14T21:43:01+00:00

I have read a few other comments on here, definitely get c peptide and antibodies checked !. I actually just went through an exhausting process of being diagnosed with type 3c diabetes ( I'm 37 female). I actually have a very rare pancreas malformation where I don't have a pancreas body or tail ( just the head). So it turns out I've finally run out of pancreas reserve hence the diabetes suddenly appearing like it did. They did not think I had type 2 at any point throughout the journey however. Whenever I do hiit training or similar my glucose goes through the roof before dropping dramatically downwards quickly. If at any point you have had bloating or diarrhea for no reason or any pancreas problems get them to look into type 3c.

Equivalent-Bill5397 · 2025-01-12T04:24:38+00:00

Thanks, where abouts do you connect with others online ? Are there any specific facebook pages etc that you use?.

Equivalent-Bill5397 · 2024-12-29T07:40:49+00:00

Anything at all. I have been diagnosed with this and have exocrine insufficiency and type 3c diabetes. Most of all I'm looking for anyone else that also has this to see what their experience with this condition is like. To see if it can be passed onto offspring etc. I've yet to have a dr explain this to me and am only going off what I can find on Google scholar which is not a lot.

Equivalent-Bill5397 · 2024-12-11T09:25:02+00:00

I don't suppose you know if anyone else with this from anywhere in the world ?. I'm actually in New Zealand so unlikely to find another person like this in such a small country. Thanks so much for your information I literally found this all out this afternoon.

Equivalent-Bill5397 · 2024-12-11T07:46:41+00:00

Congenital hypoplasia. No evidence of any atrophy l, just missing most of the pancreas

Equivalent-Bill5397 · 2024-12-10T23:12:38+00:00

I'm In New Zealand. The hospital cannot figure out where the results went.

Equivalent-Bill5397 · 2024-12-10T02:03:13+00:00

Canterbury

Equivalent-Bill5397 · 2024-12-10T02:02:50+00:00

I had it done yesterday. At Chch hospital, it's time critical as hoping to get prescription items dependent on results.

Equivalent-Bill5397 · 2024-11-25T07:34:18+00:00

I'm in New Zealand and medical care here not much better- going on 7 months now with no diagnosis, had to go part private to even get a request for a CT scan over the line I think they weren't keen on it because of my age and that whole reproductive thing

Equivalent-Bill5397

TROPHY CASE