Update

[nerd1]

Hi, so after a shock fibroscan result of 9.7 kpa, I went back to see hepatologist, who did another shearwave scan.My timelines of results is as follows (this is for info only, so people can see what I mean):

Oct 21 Fibroscan 4.7 kpa

Jan 22 Shearwave 1.57 m/s = approx 7.5 kpa

Mar 22 Fibroscan 5.9 kpa

May 23 Fibroscan 9.7 kpa

June 23 Shearwave 1.46 m/s = approx 6.48 kpa

This last ultrasound said my spleen was 8.8cm.

The hepatologist did seem more concerned this time & said he thought I had F1/F2 (previously when the result was 1.57 m/s he said it was F0/F1!). He also thinks I have fatty liver based on the fibroscan cap score of 299, although the ultrasound lady said she could only see a little bit of fat.

He initially said he thought the rash on my chest might be spider nevi, but after the result he said they probably weren't..

The literature on shearwave is very confusing- it was a logiq e9/e10 machine, and all of the studies I've found indicate that the cut offs are a lot lower than the manufacturer says.

A study comparing the e9 to biopsy found these kpa cut offs: F1 5.7, F2 6.42, F3 7.35, F4 8.87. This would put me at F2/F3.

To complicate matters my back molar tooth suddenly crumbled & fell out on Friday night, so it looks like I have a periodontal infection.

Over the past couple of days my bowel movements have started to smell of ammonia again (sorry for tmi), I've still got oral thrush and I'm having serious fungal skin infections which are hard to get rid of. I've also randomly developed small lumps on both wrists (insides).

My white blood count had been spiking up to 20 for months but then suddenly seemed to normalise, so I wasn't expecting the sudden teeth issues.

I'm going (hopefully) to see an emergency dentist on Monday and then I'll try to see my GP on Wed - I'm going to request a CBC, liver panel & lymphocyte subset, since there seems to be something wrong with my immune system.

I stopped drinking alcohol at the end of Feb 21 and to be honest I'm feeling pretty confused as to why there hasn't been any improvement, as I thought that was my main issue. My Bmi is 28.

I'm feeling pretty poorly & at this point I'm really struggling to make sense of all this data. I think it's probably a combination of Long Covid and liver fibrosis, but I still don't feel like I've got a clear answer on how much fibrosis I have.

Thanks for reading x

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Nerd1,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Realy]

What is your underlying cause? And I can only assume these tests can fluctuate.

[nerd1 in reply to Realy]

Underlying cause is previous alcohol use (very ashamed, now abstinent) and I'm assuming Covid didn't help either.

[Realy]

seems like your KPA score is up and down but down at this point, does your dr feel your doing well

[nerd1]

My GP has admitted he has no idea what's going on..I don't know what to do at this point other than monitor bloods. Lady doing the shearwave scan said it was more accurate than fibroscan, and that score hasn't changed much.What's confusing me is if it's only F2 fibrosis, why am I not seeing any improvement after 2.5 years of abstinence?

[Realy in reply to nerd1]

I would say that as long as your liver functions are normal and your tests stay the same or don’t really go up the your doing well. And just maintain what you have. I mnot sure if we can Eve have a perfect score with all these tests

[Hidden in reply to Realy]

Agreed. So many tests and results are confusing for sure. We follow bilirubin and albumen levels. We know toxins are highish due to itching and a touch of HE.

Stable at present. For us, going thru all the other results are not so helpful.

[nerd1]

Update: the dentist says my tooth has snapped off rather than it being an infection. I'm having an x-ray tomorrow to make sure & a filling to re-build the tooth.

[isi123]

I think we have all gone through that point where we ask ourselves, what is the real state of my liver? From my experience, the fibroscan is one more piece to solve the puzzle, but it is not something definitive (inflammation, sampling liver area, etc).

Another point that creates confusion is the issue of fibrosis, there are cases of fibrosis regression, but in other cases this regression does not occur,and it is not known why (age, general state of health, time that the fibrotic liver has remained). The regression of fibrosis can be confused with a regression of liver inflammation or fat (Elastography), regression is rarely supported with histological evidence (biopsy) .

I am aware that this situation spreads discouragement, but we have to try to do what we can. A point of attack can be the BMI, a BMI of 28 has a significant margin for improvement in liver fat. Ultrasound depends a lot on the skills of the operator (does not generate a measure), at this point fibroscan, i think, is much more reliable and CAP 299 is an important degree of fat.

I speak from my personal experience, with hemocrohatosis and fatty liver.

[nerd1]

Hi, thanks for your reply. It was an ultrasound elastography/ARFI scan, which is meant to be a more accurate version of the fibroscan.The problem is I'm not sure what the result of 1.46 m/s or about 6.5 kpa actually means and I felt the hepatologist was basically guessing when he said F1/F2.

[isi123 in reply to nerd1]

If it's alcohol use and 6.5 kpa, it's not a really bad value. Try to improve your BMI.

[nerd1]

Remember that SWE doesn't use the same scoring system as fibroscan - 6.5 kpa puts me at least at F2 according to studies comparing it to biopsy, and my original SWE of 7.5 puts me at F3, which is terrifying considering I was told it was F0 - F1.

[isi123 in reply to nerd1]

I understand your situation and live with that uncertainty. It always seems easy to advise, but here you are advised by people who are going through your same situation. 1º keep trying to get a correct diagnosis, it is important from a medical point of view and objectively it is evident that 9kpa is not the same as 5kpa (it is a fight with the doctors and perhaps the biopsy is the most logical step), 2º and more difficult, we do not have a time machine to undo the past, so we can only focus on the present, and try to do the things that are in our hands, focus on those numbers (kpa), it consumes us mentally, how much time throughout the day your head focuses on the fibroscan, the swe etc. I perfectly understand that feeling of anxiety, fear and lack of control that this situation generates.

[Polaris_Ab]

Hi nerd1,

How are you? I hope you are doing okay, and that you have gotten a diagnosis and treatment.

I've been following your profile since I have many symptoms very similar to yours.

Best wishes.