Advice Appreciated

Hi, after blood tests, fibroscan and ultrasound, it's been confirmed to me that I don't have cirrhosis. That's the good news I was given a few months back. Whilst at my GP for an unrelated matter last week, I asked if a letter had been received from the Liver Clinic. It had and it confirmed the diagnosis but went on to say that I have 'significant fibrosis'.

This worries me and, as I'm not due to see the Specialist until April, I'd greatly appreciate any comments from the people of this forum.

Thanks in advance.

30 Replies

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  • Hi Heisenberg, actually that post could just as well have been written by me. I have the same query. Bloods were absolutely OK, Fibroscan 8,1 and was told a mild fatty liver with mild fibrosis. I am having a liver Biopsy tomorrow and am scared stiff. So would also appreciate any comments here. Is it best to think positive in these situations ? Will follow you and wish you all the best Heisenberg ! xxxx

    Louise X

  • Thanks Louise. All the best. x

  • mildly fatty liver with mild fibrosis are the key words here. try and relax for the biopsy and hopefully the result will confirm the other diagnostics.

  • In my thoughts and prayers tomorrow Louise 🙏🏻

    Fingers crossed for you that all is ok.

    Much love, Jacqui xx

  • Thank you so much Jacqui ! All was going so well this morning. Punctual, very friendly nurses. Had the cannula fit and the sexy hospital robe on, was waiting for a porter to take me down. And then it was called off. My blood pressure (measured 5 times in the meantime) was far too high. Highest 199/111 ! Too risky. Besides that they didn't seem to like the idea that I would be on my own at home afterwards and during the night. Now I have to go to my GP tomorrow, to get is sorted. Perhaps it should have been (I always say) I doubt very much whether it will be re-scheduled for this year. As the blood pressure has to be a constant normal again. Thought I'd let you know. Thanks again for your thoughts

    Louise xxx

  • Oh Louise I'm so sorry, what an absolute nightmare for you. All that anxiety, but always best to air on the side of caution.

    So that's you off to the doctors in the morning, you must feel it's never ending! Have you suffered with high BP in the past? I know anxiety can cause it to rise a little but that is quite high isn't it 😒

    Well, fingers crossed for you again tomorrow and I hope it stabilises quickly for you and that you don't have too long a wait for your new appointment.

    Been meaning to message you for some time now, I never got back to your last message, my mums had me dizzy! I will message you anyway, for now I'm sure you're exhausted after the day you've had.

    Sending lots of love and hugs to you.

    Jacqui xxxx

  • Oh Jacqui, so sorry that I haven't replied earlier. I am in so much Christmas stress. Baking for friends and family etc. I never used to suffer from high BP but that is one of the side effects from taking ciclosporine ! I have to double my dosage in the meantime of BP tablets. It won't be done this year anymore now. Even if I was called in, I couldn't make it as I have too many activities between now and in the new year. After a biopsy you MUST take it easy for up to a week. Wasn't to HAPPY about having it done in any case. My bloods were still very good as well. I have heard that a biopsy could cause problems when air gets in to that area too. Does anyone else know about that. Or have I indeed asked before ???? Sorry if I have. Take care for me it's off in to the next baking session. For that I even get up at 3 a.m. The best time as I don't get disturbed. Bye for now !!!!

    Hugs

    Louise xxxx

  • Heisenberg, 'significant fibrosis' sounds awfully like being close to cirrhosis sadly.

    Have doctors identified what has caused your liver damage?

    There are many things which cause the liver damage - fibrosis and even early stage cirrhosis are thought to be reversible IF the causal factor is dealt with. If it's an auto-immune condition it needs treated, viral illnesses likewise need treated, fatty liver needs an adjustment of lifestyle (less salt, sugar, processed foods and more exercise), alcohol & drug causes need a cessation of these toxins - the British Liver Trust website gives lots of good advice. britishlivertrust.org.uk/li...

    The cause of your fibrosis needs to be identified then you can go about tackling it and trying to slow the progress, stop it from worsening or indeed reverse it.

    Best wishes, Katie

  • Hi Katie, it's alcohol that's caused it I believe as I drank heavily for the last couple of years, 3 or 4 beers daily. I cut it out completely for over 3 months after referral but when I got told I don't have cirrhosis I started drinking again but only at weekend and within the 14 unit guideline. Since I saw that letter I've decided to quit again for a while (until I've seen the Dr at the clinic in April). Maybe I should've salesperson questions at the time but I probably only heard DONT have cirrhosis. Thanks.

  • Is fibrosis really reversible? I thought scar tissue is permanent. I also should've asked the doc how significant the fibrosis is. From memory, my fibroscan score was 9.

  • from memory fibrosis scores of 12-13 can indicate cirrhosis-but alcohol can also skew fibroscan results if there's alcoholic hepatitis which there normally is. 3 months of little or no alcohol and a re-test sounds in order. Diet and exercise might help as well.

  • Thanks for your advice. I'm gonna abstain til I have things confirmed by the docs.

  • I would quit altogether if i were you.

  • If that's what I have to do that's what's gonna happen. But I haven't been told that. I guess I have to ask some serious questions in April.

    Thank you.

  • Your welcome. But please take this as a warning sign. I'm surprised you have not been advised to stop already. Good luck.

  • Thank you S.

  • Do yourself a huge favour and knock the booze on the head altogether. Fibrosis is progressive if the liver is constantly under attack - the liver tries to protect itself by throwing out collagen fibres and the more of this that builds up then the more squished and damaged the liver cells become eventually leading to cirrhosis. Any amount of alcohol you are taking in is like throwing petrol onto a bonfire and you've now got the opportunity to tackle matters before it becomes too late.

    As regards the reversal of fibrosis etc. The British Liver Trust page on cirrhosis says the following:-

    Treatment depends on the cause and stage of the cirrhosis. The aim of treatment is to stop the cirrhosis getting worse, to reverse any damage (if this is possible) and to treat any disabling or

    life-threatening complications.

    Making lifestyle changes and cutting alcohol out of your diet may help delay progression.

    Until recently, it was thought that a liver with cirrhosis could not be healed. This is usually the case because most diseases that cause scarring of your liver (fibrosis) are long-term and difficult to ‘cure’.However, recent research has shown that it may be possible to heal scarring and even cirrhosis where the liver disease causing this damage is able to be successfully treated.

    The page is at:- britishlivertrust.org.uk/li...

    Do please look after yourself. I've got a lovely hubby here who has cirrhosis but his is due to auto-immune hepatitis which had already done it's damage before it came to light and there was absolutely nothing he could have done to halt the progression of his illness & he would have done anything to have stopped himself becoming as ill as he's become ........... you've got that chance.

    Katie

  • Thank you Katie x

  • You might want to look at the British Liver Trust page on Alcohol and its effects on the liver at:- britishlivertrust.org.uk/li...

    Significant fibrosis really needs to be your wake up call because if you carry on drinking there will be only one outcome and that is that your fibrosis WILL worsen and lead to cirrhosis. There are enough accounts on here from those with alcohol related cirrhosis make absolutely horrendous reading - even in the past few days the posts read like absolute horror stories.

  • I think you're absolutely correct. I'm not bothered too much if I have to stop drinking my beer for good. it's a no brainer, really. I'm just annoyed at myself for assuming that drinking within the limits wouldn't be harmful cos I don't have cirrhosis. if I'm told to abstain, that's it. From my short time on this site, I see there are many people in a bad way through no fault of their own. No way am I going to ignore the warning when I can avoid cirrhosis.

    Thanks so much for your support and advice K.

  • join the club on being annoyed with yourself. Liver disease is becoming an epidemic with dual assaults of alcohol and obesity PLUS non lifestyle things like autoimmune. I don't think the medical profession helps with respect to fatty liver. My GPs were very lax on it-never heard of fibroscans etc. Only learned stuff the hard way and from this forum. From what you've said I think you should be able to turn this around. I've definitely done this in the past but was not sufficiently scarred by the experience in order to learn the lesson. Better to turn things around now before serious possible irreversible damage is done.

    keep posting

  • The strange thing is that I've had liver blood tests done before and they always came back fine which confused me a bit once I'd been referred. A bit of soul searching and re-evaluation heading my way I think.

    Thanks for the support and advice.

  • The thing with blood tests is the liver can compensate for the bits that arn't working and LFT's can be normal even with cirrhosis. My hubby was listed for transplant 2014 but delisted after 10 months because his blood results have normalised - all of his results barring AST (mildly raised) and one White Blood Cell (also only very marginally raised) are spot on within range and yet we know he has cirrhosis (shown in all scans, biopsy and late stage symptoms portal hypertension and varices). Blood results are notoriously unrealiable.

    You have 'significant fibrosis' which is basically one tiny step away from cirrhosis. You really do need to consider an end to your drinking - even drinking within guideline limits in the future will be a no no. Listen to some of the others on here who've been told they hadn't got cirrhosis so saw it as the goahead to drink normally then wham only a short time down the line - full blown cirrhosis.

    We all have your best interest at heart here.

    Katie :)

  • What is his GGT? I am post Hep C treatment and clear my bloods are now normal.Last fibro 11.9.Drinking again.

  • as Ayrshire says normal blood tests are often fine. The only reason I found out was I had a blood test in Italy which showed elevated GGT. I'd never heard of GGT or fatty liver although I'd been having the odd digestive issues for a while and didn't put it down to alcohol. I was ignorance personified.

  • Can you see your gp or speak to your consultants secretary in the meantime ? I think you score is not cirrhosis based on what I have read but that you should definitely stop drinking at least until April. I'm sorry thatdoctors are also not keeping you properLynda informed.

  • Hi Pauline,

    I thinking best if Make contact. Better to know full well what may be ahead if I don't remedy the situation.

    Thanks.

  • Have you been checked for PBC? Did they draw a AMA blood test? Let us know good luck.

  • I have no idea what blood tests we're taken. only know that there were lots of them. I think I really need to speak to the consultant.

    Thanks.

  • Yes ask get copies good luck

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