Advanced Liver Fibrosis only 28.

[RAAN88]

Hi all,

First and foremost thank you for your time.

My wife is a healthy 28 year old, non drinker, non smoker, 59KG, exceptional BMI and lives a fairly healthy lifestyle (give or take a few fast food meals here and there)

6/7 years ago in her early 20’s she started getting stabbing sharp pains in her upper abdomen. After various GP appointments and ultra sounds, she was given the all clear. The pain remained and she pushed for more tests including bloods, but again, all LTF came back normal apart from a raised bilirubin level, however this was disregarded as slightly elevated.

Fast forward 2022, she went for another ultra sound and was told she has nodular lumps on the surface of the liver and she needs to go for a MRI scan and be referred to our local hepatology clinic. The consultant also was surprised to see a fit and healthy non drinker non smoker with a ultra sound suggesting liver disease.

He recommended a fibro scan and the result came back as 20 kPA. After this she was quickly scheduled in for a biopsy.

The biopsy came back as advanced liver fibrosis (border line cirrhosis) with evidence of slight fatty liver and inflammation but no signs of autoimmune disease.

It also said that she has no metabolic risk factors and he doesn’t understand how she’s developed this level of liver fibrosis.

We now have a follow up to discuss next steps and investigations.

My question is, is there anything other than the obvious risk factors that cause liver fibrosis that we can look to be checked over? She came back clear for all infections. She tested positive for CMV but that is cleared now.

We’re so confused and would appreciate any advice?

[Kristian]

Hi Raan

There's plenty of possibilities to the potential cause. Unfortunately, its also possible that whatever is causing the issue can at times be active then inactive and so may not always be picked up on an isolated test. Its only when damage starts to show that its clear something is occurring.

I cant really suggest possibilities, better to leave that to the medical folks, but sometimes its just a case of trial and error and monitoring until something eventually shows. Some of the more detailed scans they do, such as an MRI, can give a possible indication too as some diseases leave tell tale signs in the imaging that could help point to a cause. If not then they may do a biopsy to see if that gives any better clues.

Sorry I can't be much more help at this stage, but outside of just listing every possibility we'd just be speculating. So let them do the further tests and lets hope something a bit more definitive shows up.

Good luck.

[RAAN88 in reply to Kristian]

Thank you for your kind words and response.

Even the GP stated that someone with this level of fibrosis usually is a 50+ year old with a drinking history. How this has occurred is really beyond us all.

The biopsy was done already so it will be interesting to see what next investigations they carry out. I suppose once the underlying issue is found they can treat it. MRI results with contrast are yet to return but i hope it shows something.

If anyone else has any suggestions on what tests we could push for or any similar stories please kindly let us know

[Kristian in reply to RAAN88]

Yeah, it can be frustrating but they will eventually get some idea of possibilities at least, which should at least guide appropriate management, even if they're not 100%. For many diseases the management can be similar anyway.

If even a formal diagnosis may evade them at this stage she will be well monitored, so any issues that do arise can be treated in a timely manner.

[Readlots]

Hi, have they checked for genetic conditions? Might account for fibrosis in an individual with a healthy lifestyle. They may already have included this in blood tests, it can take a while to get the results

[RAAN88]

Hello my friend,

The only genetic condition so far is that she has a sickle cell trait, not the disease.

I do wonder if this is a contributing factor and the consultant is aware of this

Not sure how much more of a life style change she can make since she’s already fairly active and eats well.

[Readlots in reply to RAAN88]

Given that she’s already living healthily, I don’t think she should put more pressure on herself to do anything different until she knows what she’s dealing with. Hang in there

[Fibro2021 in reply to RAAN88]

Hello, in sickle-cell anemia, liver damage is mainly associated with repeated blood transfusions and iron overload, as well as the possibility of infection with hepatitis B and C. However, there are cases of liver damage without these factors in patients with sickle cell anemia/trait can be associated with altered shape of red blood cells favors intravascular hemolysis and thus occlusion of the liver vascular bed, leading ultimately to tissue injury, which ranges from asymptomatic mild liver function test abnormalities to severe acute damage. Furthermore, hemolysis induces deposition of bilirubin causing intrahepatic cholestasis and cholelithiasis. I hope your doctors will consider all possible options.

[RAAN88 in reply to Fibro2021]

thank you for your reply.

We’ve just checked her May 2022 blood results and realised she had a increased IGM and IGG. This should of been a red flag to the GP but was disregarded as she had CMV at that time.

So many questions so many possibilities I hope the consultant checks over them all

[AyrshireK]

I take it they've done antibody tests for auto immune issues? My hubby has cirrhosis due to auto immune hepatitis but there was no auto immune activity going on in either of his liver biopsies - diagnosis was based on presence of antibodies and his may have originally a drug induced liver injury due to a long term prescription of antibiotics for acne. His diagnosis now is cirrhosis with burned out AIH.

He is life long t-total, none smoker, no drugs, no tattoo's, no risky sexual activity, fit, healthy and active (long distance walker / ultra marathon type things), no excess weight ever.

Katie

[RAAN88 in reply to AyrshireK]

Hi Katie,

Thank you for your reply.

The biopsy returned no presence of auto immune disease, but I will now question the presence of antibodies in the next follow up. We are fortunate that we have had quick turned arounds but ideally I’d like to go into these meeting best prepared. My wife has had 2 miscarriages in the past, both which required DNC evacuation, I’m not sure if these surgeries carried any risk, however to be fair, her pain has been present well before her M/C.

We’ve also been trying for over 6 years with no luck of a baby, I’m not sure if this may be connected with the new findings.

RAAN

[AyrshireK in reply to RAAN88]

Like I said, neither of my hubbies biopsies were conclusive for AI but that's still his diagnosis.

Hope you both get answers soon.

Katie

[Readlots in reply to RAAN88]

I’m sorry to hear about the miscarriages, that’s so hard on both of you

[MINTVCX]

There is always probability of cryptogenic liver fibrosis. But first hepatologist should rule out any possible liver disease. Good luck.

[mrob0823]

I have a small amount of hepatoportal sclerosis, portal fibrosis, and portal hypertension that is a bit of a heads cratcher to my doctors too. I do have an immune disorder (CVID) that causes a big spleen and other issues, but they can't say that's a definitive cause. I'm in a bit of a wait and watch approach. Does she have any varices or portal hypertension?

[RAAN88 in reply to mrob0823]

Hi Mr Rob

I believe our next consultation will clear up what the next steps are. We simply just know that she has a score of 20kPa and her biopsy came back as advanced fibrosis with fatty liver and inflammation. I want to push for all tests that are possible so we can find the underlying issue and treat it. I will mention the above in the next meeting?

[HermioneGranger]

Considering her young age and good health, has she been tested for Alpha-1 antitrypsin deficiency or hemochromatosis (iron overload)? Both are genetic and can cause liver damage but do not fall under autoimmune diseases. They’re also not tested for regularly. My Alpha-1 wasn’t found until I did a 23 & Me DNA test.

[RAAN88]

Thank you for your time and reply.

I will bring this up in our next consultation.

I do know that in the last 2 years she has been on supplements to support her fertility, but her pains started 7 years ago.

She has been taking -

Folic Acid

Omega 3

Kelp

pycnogenol

Fertility for women

All made by the veridian brand.

I’m not sure if these supplements have triggered the cause.

[muffins7 in reply to RAAN88]

Does your wife by chance have PCOS? Just asking because of the fertility supplements and issues. I'm part of a few PCOS groups where young women have ended up with cirrhosis or advanced fibrosis due to their PCOS since in their cause it caused an aggressive NASH due to the way it affects insulin despite sometimes being a normal weight. If so I would speak to the specialist about PCOS being a possible contributor.

[RAAN88 in reply to muffins7]

Hi Muffins

She’s never been diagnosed with a condition to be honest. She remains in the horrible unknown realm. I will be sure to bring this up, so I appreciate your feedback. It’s research like this that will help us get to the bottom of it 🙏🏼

[mtk0925]

hi I started having issues at the age of 27 after a vacation abroad left me Hep A it cleared but it has caused some issues and I did pre E during pregnancy which was not good for my liver and other organs. Hep A is sneaky it can come and be unknown unless tested for if you have symptoms she may have had it and not known, infections like Epstein barr can cause damage to the liver, iron overload too checking iron levels might be helpful and giving you a clue as to what’s going on primary bilary cirrhosis PBC runs in my family even though my auto immune aren’t showing it right now everyone well, every woman in our family has been showing signs of up-and-down liver enzymes times which our doctors a think that maybe in the next 10 to 15 years we would be developing into that. At the the moment I get blood work every 6 months and a ultrasound of the liver ever year

[RAAN88]

thanks for your response

Did you have a successful pregnancy with fibrosis?

[mtk0925 in reply to RAAN88]

sorry I didn’t see your reply, so far I’ve had 3 successful pregnancies but I do not have fibrosis yet, I have fatty liver as my dr says , but the scans do not coincide. I haven’t had a biopsy we’re taking a monitor for changes approach with a scan every other year and blood work twice a year. Something is irritating your wife’s liver, it could be the supplements, pcos, I do have that it can cause liver damage