I am trying to learn about non cirrhotic liver disease, unlike the more common NAFLD and alcohol related liver issues, there isn’t a lot of decent information to be found.
As in my case LFTs always come back normal with ALT/AST only slightly raised, fibroscan stiffness low 3.5 kpa.
But continue to have more symptoms and getting worse over time. Still have to have my blood ammonia levels tested and a liver biopsy.
Regardless of what biopsy reveals, isn’t it fair to say regardless of the cause the effect is the same ?
By that I mean a form of portal hypertension is the end result.
Would like to ask those with non cirrhotic causes to describe their symptoms and progress please.
I will use the term PSVD Porto Sinusoidal Vascular Disorder as this seems to be the latest classification for these disorders.
Am trying to understand the mechanism of this disease, above an excerpt:
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Oztrax
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PSVD has sub classifications, pre and post Sinusoidal and the spleen cause is separate sub type. I am assuming post Sinusoidal is associated with NRH and really any form of regenerative or damaged cell liver disorder . Meaning at the hepatocyte and possibly portal triads there is “shunting” occurring past the these cells.
Eg bypass is occurring, I was wondering if this reduces blood pressure somewhat (mine is 103\82 presently after years of being high).
I know a few others on this forum also experience lowish blood pressure.
Additionally this would appear to lead to both ammonia and toxin buildup in the arterial blood system.
This is to me essential a “mini” version of portal hypertension associated with advanced cirrhosis.
The portal pressure gradient would not be huge compared to cirrhotic PH.
Nevertheless the effect will be the same but at a reduced effect.
I suspect I have the same as you. All the cirrhosis symptoms except jaundice and vomiting blood. Cause is alcohol but fibroscan comes back at 4.2kpa and cap 174. I wonder if I also damaged other organs such as pancreas spleen or the digestive system. Still got a ct scan to come and ill likely test blood ammonia levels as well but if those 2 are clear then it will be smth like f0 fibrosis with hepatic encephalopathy and id struggle to get that diagnosed anywhere. A shame cos the lack of sleep and brain fog is killing me.
Sleeping was a big problem, but recently has improved
Eg getting to sleep used to be the biggest problem.
Apparently the liver makes/processes naturally melatonin which helps us get to sleep. Maybe you could supplement melatonin drops to help you, my wife has fibromyalgia and this works for her.
My last fibroscan/US report says “moderate steatosis, no cirrhosis “
Link above seems to explain steatosis well, type 2 diabetes and also medication can cause different types of steatosis. (Possible causes for myself)
It’s easy to dismiss this as fatty liver, but I think it could still show underlying conditions that cause typical symptoms of liver disease, eg fatigue, sleep issues, some neurological issues.
I am getting an ammonia level blood test next week, also have a referral to a good hepatologist. Hopefully should find some answers over the next few weeks.
I have to work full time and it is becoming increasingly difficult to do this.
I rest all of my days off and any opportunity I have at work.
Unfortunately I have also a partially fused tailbone now, which makes sitting down painful…..
Getting steroid injection for that in a week.
Got constant ringing in my ears, head feels like mild flu all the time plus daily headaches, so it’s tough presently to be active and work full time.
Im finding ot a massive struggle to work full-time too im just lucky coz im jn my mid thirties so can go thru days and days feeling like this. Havent had the need to nap in the middle of the day yet but I wouldn't be able to I dont think given how much coffee I have to keep myself going. Its really tough. I feel like somebody pulled out my battery a lot of the time. Just completed 9 weeks in my new office based job and not sure how many more I can manage. Also you're doing all the right things in testing blood ammonia levels apparently this can show things normal scans cannot such as HE not related to cirrhosis. Hopefully you find so e answers too. I'm finding it hard to be diagnosed so have to buy lactulose myself which is freely available jn the UK as just a general laxative. Harder with water pills without a prescription. Just trying to eat right exercise (mostly power walking and pressups for me) and sleep as much as I can which is hard given how often I wake up.
Not really sure what I should do now lifestyle wise,
Have lost 12 kgs over the last 3 years. 6 kgs over the last 6 months.
So from 92 kgs down to 80 kgs now.
Last 6 months I was losing weight without trying due to low appetite and daily nausea. Nausea has improved over the last few weeks.
I can’t tolerate fatty meals anymore, even pizza makes me feel unwell after I eat it and the next day. We used to have pizza as a treat every few weeks.
Hoping over next few months will slowly start to feel better.
Have they suggested a venogram vs. a percutaneous biopsy? I hope so! You’re the first person I’ve seen in 3 years mention PSVD!!! This is what I have been confirmed with - causing NCPHT. I’ve set up a FB group in a desperate bid to find anyone else out there with PSVD! If you’re on there please come and find it!!
I have ringing in my ears - it’s started in the last couple of months. I have a meld score of 10. A lot of liver pain ( a local hospital gave me a percutaneous biopsy in July 2021 which caused a life threatening liver bleed (half blood volume lost into abdomen in 4 hours) And the low platelets from my splenomegaly are causing untold problems in the ‘lady department’. It’s one of the most debilitating sides of this to be honest.
I have sought help from a functional medicine doctor after my professor told me in December the PSVD is untreatable and incurable and she has recommended high strength omega 3 for joint pain and magnesium threonate to help with sleep. The Omega 3 needs to be stopped before any surgery as does have a well documented effect as a blood thinner. Have they got you on beta blockers and checked for oesophageal varices? This is of upmost importance.
Sorry you’re in the same boat as me - but hope you come and find my group on Facebook!!
Given the low platelet count and the risk of bleeding, doctors should have prioritized transjugular liver biopsy as being safer than ultrasound-guided percutaneous biopsy. Although transjugular biopsy may be less informative, during its implementation it's possible to measure the portal pressure gradient directly and determine the severity of portal hypertension. May I ask you if the probable cause of PSVD has been determined for you? Have you had your blood ammonia levels checked and are you on treatment for HE? Has taking omega 3 helped you manage your joint pain?
The Omega 3 helped within days so definitely worth a try.
Yes the percutaneous biopsy was borderline medical negligence in my opinion, but thankfully I lived to tell the tale and we got a good sample. I have suffered iatrogenic scarring of my coeliac artery as a result of them trying to stop the bleed though sadly so with that and a host of varicose I have lots of collaterals.
I’m not receiving any treatment for HE.
I haven’t had blood ammonia checked either I don’t think.
They have found no cause for the PSVD. I was using a contraceptive pill for most of my adolescence and this has been mooted as a possible cause…
I would definitely advise you to check the level of ammonia in your blood, since through the many collaterals you mention, blood with ammonia and toxins from the intestine flows pass by the liver. This can lead to hepatic encephalopathy. One of the HE symptoms may be sleep disturbances. My ammonia has always been above normal when tested and I am taking treatment for hepatic encephalopathy (lactulose and rifaximin).
Thank you. I will ask about this at liver clinic this week. If I do have HE it triggers a large critical illness payout so it’s double in my interests to get this checked!
So I looked at “fibros” post “elastograph or fibroscan of spleen” , I guess the title didn’t come up in a PSVD search.
QUOTE :
“Liver failure is most likely linked with shunting of blood bypassing hepatocytes through many paraportal shunting vessels in the liver (in this regard, it's possible to see an accelerated linear blood flow speed with Doppler examination of the portal, superior mesenteric and splenic veins). Synthetic liver function is generally preserved and LFT are normal ranges as a rule.”
Would a normal portal vein Doppler study show this, eg the main vein, mine was 18 cm/s which is probably slower than faster. Or do you mean a Doppler study of the smaller vessels both portal , mesentary hepatic and splenic ?
I can only clarify that I was measured the linear blood flow velocity in each section that forms the portal vein - the superior mesenteric vein, splenic vein and portal vein. If shunting occurs in any section, then the velocity of blood flow in this section is accelerated and this is true for any type of portal hypertension, both cirrhotic and non-cirrhotic.
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