Autoimmune pancreatitis type 2

Hey Andrea, thanks. Yes it's been a while. Mostly I've assumed it was not autoimmune. Having type 2 changes things. But I might have to try immunosuppressive drugs. Not happy about that. For now a really strict diet seems to be controlling things. I suppose that's true for most with any form of pancreatitis. And I know there are worse things so I try to keep that in mind.

I'm not sure type 2 is official. Need to talk to GI doc. This might take a while.

Responses on here are bit rubbish at the minute but hopefully somebody sees your post. Ive seen a few sites mention type 1 and 2 but it seems that most gastro consultants dont know much about pancreas issues let alone immune related ones.

i gave been suffering for 7 months which felt like a lifetime but now seems like nothing in comparison to your struggles. I'm having an endoscopy in november do hoping that might shed some light on mt issues.

can i ask have you ever had problems with your tongue. Mine feels swollen, sore and i have scalloping around the edges where its pushing into my teeth. this all started when i was losing weight, developed ongoing left side back pain and in the last 2 months really really greasy poo (although still brown)

Your swollen scalloped tongue is typical of hypothyroidism. Hair loss, fatigue and constipation are also symptoms.

But hypothyroidism mixed with pancreas issues changes up the symptoms.

In my case I was severely hypothyroid because docs gave me wrongs meds and I also had undiagnosed pancreas insufficiency so instead of constipation I had diarrhea.

I think certain deficiencies can also cause swollen scalloped tongue but I can't remember what exactly. Maybe B vitamins.

Your greasy poo could be pancreas insufficiency in which case color would still be brown. It's pancreatitis (or liver, gallbladder) that can change poo color. I have both pancreatitis and insufficiency and colitis and all 3 can cause diarrhea so knowing which one is the cause is challenging. I think normal color but greasy is insufficiency, pale yellow is pancreatitis and more watery and blood is colitis. Sorry I know tmi.

My pancreas insufficiency, EPI, took 11 years to dx. I figured it out before the docs. So to test my self dx I bought creon (very expensive without Rx which is hard) and took it for a month. It worked so I pushed for a fecal elastase 1 test. And sure enough I had epi.

So you can try buying creon and self test. Some countries require Rx for creon and some don't.

Hope that helps.

Thank you, I am on watchlist for thyroid as blood tests showed that T3 was slightly off but then next test it was fine, then off again. Had another blood test last Friday so get results this week.

A few months ago I paid for private thyroid blood test and vitamins as I was convinced I had deficiency but at that time the results were fine, however but I had very high thyroid antibodies which meant my body could start attacking my thyroid at some point. will see how these bloods are.

I have emailed my gastro consultant to push for elastase test of my poo as it is super greasy and i'm in constant pain in my back and left side which worsens after food. I'm convinced there is an issue with my pancreas. Just waiting to hear back, I also don't think my lipase or amylase levels have been checked so I have pushed in this too. gastro wants to rule out coeliac 1st and he seems quite set that this is my issue but as i say im convinced its my pancreas.

so where do you go next with your treatment or diagnosis?

So regarding you thyroid, if your antibodies were high you have autoimmune thyroid disease, either hashimoto's (which is what I have) or Graves which I know nothing about. Which antibody was elevated, TPO or another?

You could be subclinical, meaning your antibodies have not started to change your thyroid values. This is where I started, subclinical hypothyroidism and TPO was over 5000.

If the only test you doctor is doing is ft3 find a new doc. You need TSH, ft4and ft3 tested, mornings, on an empty stomach.

Celiac disease can cause exocrine pancreas insufficiency although I don't think it causes outright pancreatitis but I'm really not sure. So possibly both you and your doctor are correct - it's both.

As for where do I go next not really sure. I guess first wait for my hospital biopsy report from last week and talk to my GI doc. I would think probably a fine needle biopsy of my pancreas but I'm really not sure.

Both celiac disease and pancreas insufficiency will cause vitamin deficiencies, so you suspicion was probably correct.

Hi it was he Thyroid peroxidase antibodies that were significantly elevated, the report said it is likely i could develop with hashimoto or graves. they tested all thyroid a few weeks back it was t3 that was off so the test last week was only on T3. apparently the typical range for antibodies is 0-34 mine were 400, which sounds high but not like yours!!

i have chased my GI dr today about doing poo elastase test as i think thus is urgent, then have to wait for endoscopy but its not EUS so im not confident it will show much.

i hope you get your results quickly and it gives you some additional info and ideally a diagnosis

Do you have your actual TSH, ft4 and ft3 blood values.

TPO of 400 is diagnostic for autoimmune thyroid.

My 5000 was extreme but so is 400.

yes from a test a few months ago, where they said all fine except the antibodies

tsh 1.3

free t3 4.7

free thyroxine 14.7

then i had more bloods month ago, i didn't get the results but gp said T3 was off so i had bloods taken again last week, just waiting for results

Can you also include normal ranges. Every lab is different.

the ranges they gave me were

tsh0.2-4.7 so mine was well within that at 1.3

free t3 3.1- 6.8, mine was 4.7

free thyroxine 12-22 mine 14.7. i used private lab to get these done ,

antibodies 0-34, mine were 400.

hopefully get call from gp today on latest results although im not sure what to expect, if i pin my hopes this being thyroid issue or would it just mean i have thyroid issue and potential pancreas issue.

thank you for sharing your insight

i meant to say have you joined the forum on the National Pancreas Foundation, it seems a bit more active so you may get a better response

If you were taking thyroid meds I would say t4 is too low but for you that's not the case yet.

Thyroid disease can be hereditary, especially mother to daughter. Do any females in your family have thyroid disease, mother, sisters especially?

Hopefully you gp has already said this but with a elevated TPO you need to have regular tests. Did you get your updated ft3 results?

hi no my mum does bot have thyroid issue, chased gp for results she was off for few days but is reviewing them today so should get a call.

hi got my T3 results back apparently back in range, asked for an actual appointment with the gp to discuss the fact they are changing (is this normal) and to raise point re the antibody results as gp hasnt seem them.

have you had your results yet