liver cirrhosis for unknown Reasons

[Marwan76]

If possible to know if there anybody here have liver cirrhosis for unknown Reasons ? And if any body here about (advanced genetic test) to diagnose such cases

[Hidden]

Hi Marwan76

Please see link below to the Cirrhosis information on the British Liver Trust website which may be of use to you:

britishlivertrust.org.uk/in...

Take care and best wishes.

[Hidden]

Cryptogenic liver disease (also referred to as cryptogenic cirrhosis) is the name doctors give to liver disease in which the cause is unknown. Here is our info on this.

britishlivertrust.org.uk/in...

[AyrshireK]

Hi Marwan, I know you've had various tests and things but you don't mention in either of your posts whether you've had a liver biopsy to look at your liver on a cellular level as that can often (but not always) reveal the cause of liver damage i.e. which cells or areas of the liver are particularly affected. You've got pointers for a possible auto immune cause and a liver biopsy would investigate that further.

Katie

[Marwan76 in reply to AyrshireK]

Hi Katie , thanks for your Reply , in fact i had a liver Biopsy before 21 years , to find out the reason of Mild splenomegaly and slight elevation in bilirubin , and the Biopsy was normal

at that time , i even did ERCP and it was normal , however Fibroscan show F4 liver cirrhosis before 7 years .

do you think it will be useful to do liver Biopsy again ? no risk

[AyrshireK in reply to Marwan76]

If your liver biopsy was 21 years ago but your cirrhosis diagnosis more recent then it would be sensible to have a further biopsy to help try to establish the cause of your cirrhosis. A fibroscan alone isn't enough to establish cirrhosis either (it needs to be done in conjunction with other tests and perhaps a better visualising scan). It sounds like someone needs to repeat all your tests to establish for certain the current state of your liver and what exactly is going on - a lot of your tests seem to have been done many years ago without appropriate follow up.

I am guessing you are not in the UK, if you had a diagnosis of cirrhosis here then you should be getting 6 monthly ultrasound scans to monitor your liver together with regular bloods.

Katie

[Marwan76 in reply to AyrshireK]

thanks Kattie , i am doing every 6 Month Ultra sound and every two month many tests like liver function test , CBC , and others ,contrast MRI every few years , recently before 3 Month and show cirrhosis but not the cause ,

i am in Dubai , however i believe the time i did liver Biopsy , there was inflation in my liver ongoing because of Mild splenomegaly and slight elevation in bilirubin

which was no reason & interpretation found at that time

i will think about to repeat the Biopsy again but one of the doctor advise me to do advanced genetic test even though he says it will not help in the treatment anything except that you will know the cause

[AyrshireK in reply to Marwan76]

Sounds like you are actually being very well looked after then despite not knowing the cause of your condition. As you've had it for so long and are doing generally well, all a diagnosis could do is potentially allow treatment of the underlying condition or remove the cause.

Go for the genetic test if you think it will make any difference, however, you seem to be doing generally ok and seem to be getting appropriate and more care than the likes of my hubby gets over here.

All the best, Katie

[JimmyJackson in reply to AyrshireK]

Hi

I had biopsy about 9 months ago but it added nothing as to the cause of my problem, so still a mystery.

Fibroscan last year showed further deterioration, but as the liver dept at R.C. H ( Cornwall ) is under funded / over subscribed it seems the answer is not to call me for a further scan

The current crisis isn’t helping

Any ideas would be welcome

[Marwan76 in reply to JimmyJackson]

Hi , may i know what values your Fibroscan shows through time , mine showed

13 to 25 KP within last seven years and it varies , last one before few three month was 17 KP , do you think Fibroscan is accurate for detection the amount of the scars ? and and you can consider it as accurate tools for development and improvement of the fibrosis in the liver ?

[Hidden in reply to JimmyJackson]

Jimmy,

If you have cirrhosis you do need 6 monthly scans and bloods. If your hospital cannot facilitate that, you may want to consider to request a referral to another hospital. If you are in Cornwall then you could look at Plymouth. Here is the link to our 'patient charter' that details the care you should expect to receive if you have a liver condition;

britishlivertrust.org.uk/ne...

Call our helpline for a further chat if needed. 0800 652 7330

Trust1

[JimmyJackson in reply to Hidden]

I have already been referred to Derriford, had a consultation but no more info about what has caused / causing my cirrhosis

I had a fibroscan when first diagnosed, another about 9 months later which showed it much worse.

The only answer seemed to be, that it was not reliable & no further fibroscan has been offered since then.

I have had regular sonar scans which all OK it seems

It sounds as tho I am being critical of my consultant which is far from the truth, he is totally overworked / underfunded & I have a high regard for him.

At present I am awaiting an appointment with him, but not holding my breath.

According to your website I do not have serious symptoms, if so I don’t think I could cope with anything worse, especially the severe insomnia, which I understand is one of the symptoms.

I can phone you if there is any info you can offer

Many thanks & best wishes

Jimmy Jackson

[Hidden in reply to JimmyJackson]

Hi Jimmy,

Im glad you have been refererd on. I will just remove the name of your consultant on the comment for legal reasons.

You are very welcome to call for a chat if needed.

Trust1

[JimmyJackson in reply to Hidden]

Yes that’s fine I shouldn’t perhaps of named him but have no complaints about him. Will phone you what are the best times

Regards

Jimmy

[one2one]

Hi Marwan, I’m A 72yr old female, diagnosed with N A liver disease/cirrhosis in Sept2019 unknown cause.

I’m having 6 monthly scans + bloods. And 12 monthly review with consultant.

Not had any biopsies etc.

I remain fairly stable most of the time, occasional short bouts of nausea, lethargy. Recently also fluid retention, being treated with small dose of diuretics. As a previous very active person walking, gardening, cycling, swimming etc.

I tend to keep well by being careful with my dietary needs, and regular gentle exercise.

Best wishes, with your present ongoing issues.

Chrissie 👌.

[Marwan76 in reply to one2one]

Hi Chrissie , thanks for the Reply , so what your doctor recommend you , any drugs or specific diet

[Pussycat65]

I have Cirrhosis with no cause known! I have a very large liver and it is 100% affected so no treatment!

[one2one]

Hi Marwan, the only medication I take is the small dose diuretic I was prescribed by Dr 3 weeks ago, for fluid retention. I am due to speak with Dr again tomorrow, to review it.

Diet ..... I follow mainly Mediterranean type diet, I’ve picked up what to eat or not to eat following the forum site’s guidelines excellent, in particular types of foods which are really beneficial for you. My basic diet is

Fish, particularly high oily, salmon, sardines, bass, & many more. Chicken & turkey fillets, and lean pork medallions. All can be seasoned with a variety of your friendly spices and herbs rack, or fresh. All adds to flavour.

Don’t eat processed foods, full of toxins !. Avoid white foods, For eg, bread flour pasta rice. I have brown multi seeded bread. Wholemeal rice . Eat as much as you like veggies & fresh fruit. Veg and fruit particularly beneficial for you and listed on site. Drink plenty of water ++, it keeps you hydrated and washes any toxins through your liver. Hopefully you will find my basic information useful, it’s just a small part of my actual dietary intake.

The only other thing you need to consider is regular daily exercise levels.

According to your age, I don’t mean training for a marathon or hours in the gym haha. Take good care.

Chrissie 👋

[Marwan76 in reply to one2one]

thanks Chrissie for the useful information , really appreciated .

[Splodge60]

There is usually a reason but finding it is the conundrum. Keep asking questions till someone gives you some answers.