Still feeling lost but frightened now! - British Liver Trust

British Liver Trust

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Still feeling lost but frightened now!

Kensgirl3 profile image

Hi I posted last week because I had a Fibro scan and my score was 17.6.

The guy who carried out the test said that my score was high but not much else. Since then Ive telephoned the secretary of the Gastro team because it was one of there doctors who referred me for the test. I explained everything to her she then faxed and got my results from the hospital I went to. She said she would pass them on to the doctor who referred me and a hepatolagist. She said someone would telephone me but as of yet I’ve heard nothing. My GP is on holiday and I can only get a five minute emergency appointment with Locum GP.

The secretary posted the written results to me and I’m now scared and not knowing what comes next. The results has the score of 17.6 but it also says I have stage 4 cirrhosis. Can anyone help me as in explaining what this is and what does it mean. I don’t drink but I am a little over weight but I’m on the Keto diet.

I’ve read a little about cirrhosis but I don’t understand how you get it. Also can this show up on the Scan? Am I going to be really ill? At the moment I have days when I feel poorly but also days when I’m Ok. At the moment I am

Just itching like mad all over which is awful. If anyone can give me any information and don’t hold back! I would be grateful

10 Replies

If you do indeed have cirrhosis then the fact you are being referred to a hepatologist is ideal. Your first appointment in all probability will be about your history as they will need to try and identify the cause of your condition - there are numerous reasons why someone might develop cirrhosis (in our case, t-total, fit and hard working hubby was diagnosed with cirrhosis due to auto immune liver disease).

There are lifestyle causes - drink and drugs. Viral infection - the viral hepatitis's - Hep B, C etc. Genetic conditions, auto-immune conditions, there is Non Alcohol Fatty Liver Disease which can either be caused by a less than ideal diet with insufficient exercise but also due to medication, poorly controlled diabetes etc.

Doctors will need to take a history from yourself and try to work out what has lead you to have liver disease. It might require further tests, blood tests, possible biopsy, further scans etc.

The progression of many liver conditions can be halted providing the cause can be identified and either treated with medicine or by adjustments to lifestyle.

Referrals to hepatology can take some time so you will need to be patient, if you are relatively symptom free then that is great news as well as your fairly low fibroscan score (it can go as high as 75 kPa with cirrhosis). Fingers crossed they've caught this early enough for intervention that will prevent it worsening and even potentially reverse to some degree.

Fibroscan is only one piece of the puzzle and whilst it is showing 17.6 kPa it can not differentiate between fibrosis and ongoing liver inflammation - so if any of your liver inflammation markers are raised in blood tests - ALT/AST the damage might not be as severe as it sounds (Fibroscan can give false high readings!).

Hope your wait to see gastro or hep doctor isn't too long and you can start to get some proper answers. Even if you do have cirrhosis it isn't the end of the world and you can still go on to have a long life even with the condition - it's a case of watching and dealing with the side effects.

I'll point you in the direction of the main British Liver Trust page where you will find information about everything to do with the liver and how to look after it, liver conditions etc. britishlivertrust.org.uk/

All the best,

Katie

NathalieR profile image
NathalieR in reply to AyrshireK

This is such a informative reply. 😊

Trust9 profile image
Trust9Partner

Good morning Kensgirl3,

May I suggest you contact the nurse led helpline on 0800 652 7330, Mon -Fri 10 am - 3pm and you can speak wih the nurse specialists.

Best wishes,

Trust9

Hi there, Katie and the Trust have given excellent advice and information. Similar information in fact to myself when reaching out at the beginning of the year for some sort of clarity about what was going on. I found out at the turn of the year that I have similar issues to you. I would recommend calling the help-line as they were brilliant and after discussing my care under the hospital it clear it was sub-optimal and I was able to 'make a plan of action'.. I finally have an appointment with NHS Gastro consultant tomorrow with results of bloods, ultra sound, MRI and Fibroscan to discuss and I have written a long list (using the suggested questions on here) to ask tomorrow, the biggest issue for me is lack of information and all the waiting. At all stages of tests Ive been told something different by that department or operator. I am not sure if you can PM me on here (as Ive never used it) but as I say our stories are very similar and happy to share my experience and Fibroscan scores. It does get a bit easier to think positively about the situation as the weeks progress, but I can understand your anxiety. Take care x

ThreeSmiles profile image
ThreeSmiles in reply to LHR007

Hi LHR

To write a PM

- From the Menu select the icon which has 3x3 dots

- Select “Members”

- Enter the member’s name.

- Select the person you want - if you entered the whole name in the Seatch there will obviously only be one name 😀👍

- Select the “Message” button in the blue Header

Hey presto! Write away 👍

in reply to LHR007

Hello LHR007

Just a brief note to wish you good luck for today and hope all goes well

Love

Shropshirelass

I really think you would be wise to get to see one of your GPs as soon as possible. Try that first and ask how they regard a diagnosis of Stage 4 Cirrhosis

Do the same with Secretary to your Consultant. Explain about your worries and anxiety over this, which is quite understandable. I firmly believe that being proactive about learning things however you can, takes away those worries and you then start to get so angry. At that point you may get some satisfactory answers I hope.

Good luck xx

Good Morning Kensgirl13

Firstly welcome to this wonderful forum of great kind caring people who will be by your side as long as you wish.

There's not much I can add as I see my friends have been keeping there tiny fingers busy 😊 with lots of great advice.

So I'm just going to wish you well and look forward to following your progress.

Remember you can scream cry crack jokes or just write to us when your just having a bad day or you feel lonely as there's always someone not sleeping!

Take care and keep.in touch

Love

Shropshirelass

Hi Kensgirl,

I was diagnosed over 3 years ago with F4 cirrhosis, but your score is a lot lower than mine (37.5 Kpa to 25.2Kpa with a mean score of 29.8).

The feeling OK one day, and rubbish the next, and itching, are par for the course I'm afraid, but in my case, the itching has subsided.

Hope this helps to lower your anxiety a bit,

David

Hi

I am loosing weight I’m on the Keto diet (no carbs)..it’s not warm where I am it’s cold, damp, and horrible and it keeps trying to rain. Roll on the summer 🙂

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