Stomach Ulcers/inflammation? Can Pots Do This?

[Terrier]

Hi there, having just been told by a cardiologist that he thinks I have POTS it made me wonder about a diagnosis of Crohn's disease that I had earlier in the year.

My symptoms were quite unusual (general flu-y feeling, VERY high fever and a sickly feeling deep in the stomach but no bowel issues whatsoever) which meant it took a while for them to diagnose me and even then they didn't seem 100% about it. They said with the amount of inflammation and ulceration they could see in there I should've had much more 'classic' symptoms.

I had a hellish course of steroids which cleared it and am now on immunosuppressants long-term (they weren't sure whether or not to put me on them and basically left it up to me). Only thing now is that I'm wondering if POTS could've somehow been the culprit? I imagine it probably accounts for the long-term IBS I've had.

It's very possible that it could be Crohn's as my father has had bouts of it and there are autoimmune issues on my mother's side too but obviously this has put a further potential doubt in my mind and made me wonder if I'm on the right track taking such strong medication for it. I'll mention it to my GI when I next see him in a couple of months anyway but I can't imagine he'll be too up on POTS since it seems relatively obscure.

If anyone has any input it would be greatly appreciated.

[Chaos]

Sorry to hear about all that you've suffered thru!

With the ulcerations that they saw in there were you tested for H-pylori?

From what I know about POTS, it would seem unusual that it would cause this level of GI issues. More commonly POTS is associated with IBS types of issues where they don't usually see much of anything unusual with scopes, studies, and lab work etc.

As I mentioned in your other post though, I'd be curious to know if they are looking at auto-immune POTS as a possible cause of your POTS. Once you have one type of auto-immune disease, it's common to have several. Especially with your family history it sounds like you're more likely dealing with Crohn's than POTS being the cause of your GI symptoms. Sorry!!

[Terrier]

Ha, don't apologise Chaos! Thanks for the response. Just trying to get all this as straight as I can in my own mind really, I was curious as to whether anyone here might've had similar issues.

The cardiologist was aware of my probable Crohn's diagnosis but he didn't mention a possible relationship there, I guess I'll have to remember that question for him next time. Hypothetically, if it was autoimmune POTS might the stuff I'm on (Azathioprine/Imuran) actually help?

[Chaos]

I don't know if the meds you're on would be helpful for the POTS. I know they are doing all kinds of studies now looking at the role of inflammatory cytokines with a lot of these types of diseases, but I don't know that it's known yet just which ones are implicated with POTS. I know Mayo has identified several markers for auto-immune POTS, but when watching the video that Alex posted the other night under the thread "POTS movie night" in the one by Dr. Raj (from Vanderbilt), he was saying he'd never had one come back positive. So who knows where they are on all that.

Seems like most of the folks on here with auto-immune type POTS are doing (or trying to do) IVIG treatments. I think if they have small fiber neuropathy they are thinking it may be more auto-immune??? I may be totally off base on that tho. I know my POTS neuro has said he suspects I have auto-immune POTS but when all my markers came back negative, his response was "you just have a type we haven't identified yet."

[Terrier]

Thanks Chaos, sounds very up in the air as I guess a lot of stuff is with more obscure conditions like this.

I'm getting the impression that having finally got a diagnosis the next thing is to try and determine your sub-type of POTS if at all possible (I guess it's probably very difficult in most cases) to give you a better idea of what treatments might be more worthwhile? Not sure how you go about that or who exactly you're supposed to see, I'll search around and see if there happens to be anyone who really specialises in this area somewhere relatively close by I guess.

[Lethargic Smiles]

I just thought I'd throw in I have had gatsritis and suspected ulcers, but when they've done the endo/colonoscopies, there is only inflammation. I don't have IBS or Crohn's (do have celiac) so we seem to be in different boats sort of. I believe the root of my hyperadrenergic POTS is probably rooted in something autoimmune and my body probably overreacts to things normal people's wouldn't and that include my stomach reacting to triggers such as acids. A change I have made is I used to drink a pint of tomato juice first thing in the morning for the sodium, now I drink broth since it isn't as acidic. I don't take ibuprofen on an empty stomach... stuff like that to help my body help itself.

I took a brief journal article providing an overview of POTS to my gastro. I just said, "I have a type of dysautonomia called POTS. It is complicated to explain so I figured it'd be easier to just bring you this." I also explained my history of nausea, vomiting, and gastroparesis. She read the abstract and skimmed the article and seemed to instantly understand the types of symptoms I'd have with my ANS not functioning correctly. So, while she didn't shock me with POTS know-how or anything like that, she was open to reading my article, learning about my condition, and considering how a malfunctioning ANS could impact my GI system. That's all I expect from my non-POTS specialists and anything above that is just the frosting on the cake!