Non cirrhotic Portal Hypertension

[Gloriatoone]

Hello, I am from the United States. I have recently been diagnosed with non-cirrhotic Portal Hypertension. I have mild ascites and the Portal Hypertension was discovered when I had two bleeding varices that required banding. I am taking Nadalol and Spironilactone for the ascites. Does anyone else have a similar problem? I wonder if it is OK to exercise or if any foods have been shown to reduce the Portal Hypertension?

[Hidden]

Hi Gloria,

Welcome to the forum.

If you have portal hypertension, there may be some special considerations you may need to make in your diet to stay nutritionally well and to help to manage your condition. We would therefore suggest that you get specific dietary advice from your own doctors, they may also choose to refer you on to a hospital registered dietitian for more specific guidance.

We would also suggest that you discuss whether or not it is safe to exercise with your own doctors who are best placed to advise you.

Best wishes,

Trust1

[Hidden]

I am in a similar position to yourself through having an auto-immune disease. I have not been advised of a specific diet and I have been told that not only is it good to exercise, but I have been encouraged to do so. The only thing I have been advised against is lifting weights (small weights is OK, but no weight training)

I do avoid eating processed foods or indeed any foods with high salt content as the only thing I was specifically told was not to add salt to my food, although I did tell them that this was not going to happen with regard to eating fries!!

As the BLT have said, it is a good idea to ask your team for clear advice here, but I did want to add my own experience in for re-assurance. All the very best

[Gloriatoone in reply to Hidden]

Thank you for replying back.

[M8118]

I was diagnosed two weeks ago with Obliterative Portal Venopathy with Nodular Regenerative Hyperplasia - extremely rare liver issue that leads to non-cirrhotic Portal Hypertension. It's effectively idiopathic - no diagnosable root cause, in my case. Fortunately I still have no apparent since of varices or ascites (although last endoscopy was 5 years ago, and varices can exist pre-bleed without symptoms, from what I read).

I've been researching the portal hypertension topic extensively. This is perhaps on of the best primary source pieces I've uncovered.

ncbi.nlm.nih.gov/pmc/articl...

Again speaking only from personal research, consensus seems to be that a low sodium (<2g day) is advised for those with PH. If liver functioning is an issue (in my case, liver is fine even though blood flow is at issue), I've also seen lower protein levels suggested. As other note, a dietician would be best. And obviously no drinking, smoking, herbal supplements without doctor consultation, etc.

As for exercise, I've seen a number of recent research pieces indicating that high-intensity workouts (explicitly high-intensity - no real comment on overall workouts) may actually present some increased bleeding risk. This would be something else to raise with your doctor.

If you don't mind my asking, did you have any symptoms prior to the varices and ascites? Any diagnosis for root cause?

[Gloriatoone in reply to M8118]

Thank you for replying back. The only sign I had was that my ankles and feet started swelling, mostly when I would sit for long periods. I just ignored it, thinking it was not important. I felt really tired a few days before I through up lots of blood caused by two varices that began leaking. I recently had an ultrasound that shows the blood flowing normally in and out of the liver but I am on Nadalol and so that keeps my portal hypertension down which may be why it is showing a normal rate. They didn't find any blockages. Are you taking a blood pressure medicine like Nadalol? So for now, they don't know what is causing it so it is being called idiopathic also. I had hepatitis (type A) when I was 6 and wonder if that caused a problem that is just now showing up. Can I ask what medications you are on? Are you retaining any fluid? My doctor wants me to get an endoscopy every 6 months to make sure I am not getting more varices. Evidently my condition is very rare and occurs mostly in eastern countries, not the U.S.A. where I live.

[MistyMiss in reply to M8118]

Thank you so much for sharing that link. I have recently been diagnosed and this was very helpful. Hope all is well 5 years later!

[M8118]

I'm still going through more and more testing - my second MRI is in a week to check closely on even more of the liver system. But as it stands, I'm on no medication. There have been no signs (though now specific testing) of high portal pressure levels. My liver specialist said I had a pretty amazingly rare but ultimately boring diagnosis -- and that while things will slowly progress, everything appears good at the moment (aside form the elevated LFTs and the ultimate diagnosis) and that hopefully it will be decades before there's any real issue.

[MistyMiss]

I know this was 5 years ago but I am newly diagnosed. Has there been any update for anyone on diet and exercise? I know I really have to watch my salt. Once slice of pizza and I blow up like a balloon. Have to get used to a no salt lifestyle quickly. I have varices in esophagus and stomach. No bleeding yet abd liver tests are fine. Thanks for any updates!