Different results from different exams - Hepatitis C Trust

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Different results from different exams

16 Replies

Hello,

I’ve got a mystery for you.

A Fibroscan with a 21,6 score indicating fibrosis, an ARFI elastography indicating F0, in other words, no liver damage, two ultrasounds with level 1 steatosis and an MRI with a level 1 steatosis.

And a crazy doctor that says that no way in hell I’m F0. I should be at least F3 according to her.

It’s important to mention that my body fat is above 40 and I have a lot of abdominal fat.

So, I have three exams saying I’m fine and one saying that I’m not.

Which one should I trust? Is ARFI more reliable than Fibroscan I’m obese patients? Can an ultrasound detect cirrhosis reliably? What about an MRI? Can it detect cirrhosis?

As you can imagine, I’m going crazy.

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16 Replies
navigatinglife profile image
navigatinglife

Hi j,like I messaged you I don't rely on the numbers. I was told nothing wrong with my liver for years despite certain numbers flagging high. then after going crazy but more desperation and a nurse friend I tested position for hep c with a sky high viral load & pretty sick. I am in limbo to a degree awaiting a fibroscan & blood tests in April. I have to go by how I feel & try not to worry. I fancy the MRI as more definitive. it's crazy as you say, &seriously stressful for you. difficult also when unwell. I had an ultrasound originally which 1st dr said looked ok so dismissed me. months later he showed me the report along with charts etc mine was off the scale? As I am still here & in the system I have got used to it all & am trusting my instinct & doing what I can to look after myself. Opposite to you as no body fat at all. Best get as many tests and results as poss, like me stick with the positive ones try to ignore the bad ones 😁 good point you made. Think I will ask about MRI or the like, navs 😍 😍

in reply to navigatinglife

The whole thing is absolutely insane. I’m tending to believe in the other exams but it’s hard to get the Fibroscan out of my head. Every single place I read says something different. First us are reliable but some people mention they are not. My doctor says mri is the gold standard for my case but a lot of people say it’s not even used to evaluate this sort of thing. Do they know what they’re doing? Geez

navigatinglife profile image
navigatinglife in reply to

I disregard other people's findings as like you there is so much conflicting opinions /reports etc. I know when there is something wrong with my body and even if they give us all these tests etc, will be treated accordingly? I wonder. Then I educate myself reading professional articles & papers. I still favour the MRI but don't really want to open any more cans of worms ☺

L4LSarahM profile image
L4LSarahM

Hi John - quick clarity question. Did they use the 'XL' probe when they Fibroscanned you? I am leaning to the Fibroscan being more reliable, however my knowledge of the ARFI is limited. The very nature of the Fibroscan makes it good at assessing the firmness of your liver which then translates to cirrhosis.

in reply to L4LSarahM

Yes they did, but still when you’ve looked at the monitor you would see a white part on one of the scales that was not supposed to be there, that meant fat. It was occupying 40% of that part on the screen even with the xl probe. What I’ve leaned is that Fibroscan is not reliable in obesity patients.

navigatinglife profile image
navigatinglife

One can have fibrosis, without cirrhosis, many stages of liver damage /disease. keep the fatty liver under control, get it down if possible as that will improve your liver elasticity and prevent decline into cirrhosis, 😍😍

in reply to navigatinglife

I don’t think I have cirrhosis but improvement is always welcomed!

navigatinglife profile image
navigatinglife in reply to

absolutely! one can only truly gauge results against one's own. ie, I only measure how high my liver enzymes are against my own, same for my fibroscans. Also depends on what type of liver problem one has, the result scores, kpa or whatever they are, are measured differently for diffrrent diseases. So my hep c fibroscan score is not the same as that same score of somebody with say NAFLD etc Make sense? But liver problem symptoms & signs do present the same, itching skin, palmar erthyema and so on,

I don't know but as a chubby italian myself with a fibroscan of 21.5 I'm hoping that your going to say that abdominal fat can make the results look worse

in reply to

I’m curious about what your doctor said about your result. As far as I know and from what I’ve seen on the screen, belly fat like ours screw up Fibroscan results overestimating them. This is a known problem with this kind of equipment and this is why they’ve invented the XL probe that should fix this and this is why other methods like ARFI seem to be better, depending to whom you ask. Answering your question, the Fibroscan results in obese patients will almost always be overestimated, the question is how much.

navigatinglife profile image
navigatinglife in reply to

You are absolutely correct on this point, thus the MRI

I'm not obese but I wasn't too far away when they did the Fibroscan. It was done by one of the blood nurses at clinic and she struggled to get any result at all with the mobile equipment she was using. She didn't and no one else has ever explained to me what the score means ... all she said was one chap who had finished treatment rescored at 6.

They picked up the hepatitis after my routine old lady tests showed seriously low platelets, they first thought it was being caused by a small gall stone because I had no symptoms at all, indeed I was very healthy and active for my age apart from very occasional migraines. The migraines have not shown their face since I started the HepC treatment.

in reply to

So you're discovering online that you might have cirrhosis?

This is why I never look for health issues online. It scares the hell out of me.

But I have good news for you. If she struggled to get results, there's a good chance they're unreliable.

Also, there are several reports online from people that had worst scores than ours and their scores are much much lower, this is probably why she mentioned the other person's score after treatment.

If you don't have any alterations, I would take your score with a grain of salt.

If I were you I would focus on treatment because form here, the only way is up.

Myob67 profile image
Myob67

Dear John, I have read that fibroscans are unreliable.

Lin

in reply to Myob67

That's nice to know, Lin. I read that also. A lot of people complaining.

I’m reading about some horror stories about the side effects, people with swollen liver, abdominal pain and all sorts of horrible things. I thought the side effects were almost non-existent. What side effects did you guys have during treatment?