Mixed results

[Jaxxy8]

Hi all

I got told years ago I had NAFLD and no one really said it was a big deal. I was young (ish) and didn’t do anything about it.

I was totally symptom free and then had an endoscopy for acid reflux (so I say “symptom free” but not sure if related but I know lots of people with acid reflux with healthy livers).

My results came back as everything looked good but an “incidental finding of portal hypertension gastropathy - no further follow ups!” Didn’t mention varies/bleeding.

I panicked and went to my GP and all my bloods were done - they said my previous liver bloods were only slightly elevated and on my latest ones they said they are stable and have been for years. They have fluctuated around the same levels.

ALT - 68

AST - 61

Platelet count - 224000

Alb - 4.2 (or 42)

I had an ultrasound that showed fatty liver, portal vein patent and normal blood flow but an enlarged spleen.

I went back to my GP that said enlarged spleen can be caused by loads of things - fatty liver being one of them. She said other than that, my insides looked normal (well apart from fatty liver of course).

She did an online calculator and all my scores are borderline low risk.

I am being referred so I can’t do anything but wait - in the meanwhile I’ve lost a stone and eating really healthy. Never been a drinker anyway.

A liver “expert” said the portal hypertension was probably misdiagnosed as I have a lot of gastric issues (acid reflux, IBS) - my notes from my endoscopy had no info on it like how much he could see / bleeding etc!

Positives -

* No symptoms of anything (wouldn’t have had a clue if I hadn’t have had the endoscope) - there’s no fatigue, no blood, no appetite loss, no (unintentional) weight loss, no swellings

* Ultrasound - whilst I know it’s not the most sensitive of tests - it showed no liver enlargement (just fatty), no portal problems, no gallbladder problems

* Bloods - fib4 score, NAFLD score and ast/alt ratio are all borderline low risk/intermediate risk and platelets good.

* No diabetes, blood pressure ok, cholesterol ok

Negatives-

* Enlarged spleen (150cm)

* Portal gastropathy noted on endoscope (but not how much was seen or any details)

* bloods are still elevated (even if not by lots)

* My BMI is 35 (was 37 before my stone loss)

Does anyone have any insights? I’m so confused and I may have a long wait for an appt!

Thanks for reading

[AyrshireK]

The absolute best thing you can do for your liver health is to take action NOW to try to get more weight off and include more exercise in your life. A BMI of 35 is still very high and putting more stress on your liver.

The BLT has guidance regarding Non Alcohol Related Fatty Liver Disease at:- britishlivertrust.org.uk/in...

Plus, a downloadable leaflet on treating NAFLD with healthy diet and exercise. britishlivertrust.org.uk/do...

Whilst you are awaiting your appointment get started on your new loving your liver lifestyle and fingers crossed you can get numbers back down, stop any progression and hopefully heal any existing damage.

Katie

[AnxiousPete]

If your gastroscopy report is unclear I would ask the GP to request whether varices were noted from the consultant who carried out the gastroscopy. Portal gastropathy sounds like there might be varices. No bleeding is not a sign of everything being OK. Portal hypertension is usually indicated by varices which are graded from 1 to 3 with 1 being the least serious. My Fibroscan nurse said she could not see evidence of portal hypertension but my gastroscopy showed grade 1 varices. Good luck going forward. Diet and exercise for weight loss will always help.

[vinylcollector in reply to AnxiousPete]

My portal hypertension they tell me although I have it everything is moving in the right direction in both directions. I don't have ascites. They haven't done the camera exam. Always talk to your GP or specialist, they have all the answers.

[AnxiousPete in reply to vinylcollector]

I would push for the gastroscopy as nobody wants bleeding varices and the only way to check on whether you have them or not and at what stage they are, is by camera. My consultant says I will have regular GI scopes to check on them.

[vinylcollector in reply to AnxiousPete]

Well it would be far to risky 100 mile journey 3 hours by bus on Scottish potholes back home. They told me during a recent scan my blood is moving in both directions as it should, But I do have Portal Hypertension and enlarged spleen, no ascites.

[FlippinOut in reply to vinylcollector]

How did they determine that you have portal hypertension? Did you have a test to measure the pressure in your portal vein?

[vinylcollector in reply to FlippinOut]

They did the Ultrasound scan. Enlarged spleen 17 inches indicates PH. Last scan they said it is flowing in both directions as it should but back pressure causes spleen to enlarge. That's what they told me.

[vinylcollector in reply to AnxiousPete]

It's all very vague. I'm one of those people that understands where everything is and what it does. The problem is they are all so vague in their opinions. I suggests that people study a top notch biology book, rather than worry about what results after a blood test mean. Eat real wholesome foods, reduce salt, sugar and artificial fats. Avoid drinking. Get outside and walk. Rest plenty and don't worry.

[FlippinOut in reply to vinylcollector]

I can do everything except the “don’t worry” part. 😕

[vinylcollector in reply to FlippinOut]

Worrying seems to make it worse. But I understand.

[vinylcollector]

It's all very vague and many opinions. Best thing to do is keep on questioning them. It was no big shock to me when they told me. I do wonder if they say things to shock, to get people to change direction.

[Greengal314]

hi there! You can have portal gastropathy without varices. I was told I have a mild form of it a year ago. No varices. I need to get it checked again in 3 years.

I honestly don’t think I have it anymore. I was experiencing indigestion and reflux back then. I no longer have such issues. I won’t know until they check.

Sounds regardless of your exact diagnosis, the issues can be improved upon if you take action to improve your health via diet and exercise.

I’ve been following the recommendations and focusing on diet and exercise. I am drawn to that anyway, but for 3 years Covid put a big barrier in going to gyms and yoga studios.

Make a plan. I feel better than I have in years. Best of luck!