Diagnosis of cause of Cirrhoses

[JimmyJackson]

Hi 3 years ago after a bowel cancer op, I was diagnosed with "contained liver cirrhosis"

I have never drunk alcohol in quantity, except for occasional beer or wine. No reason has ever been given for the problem.

I had a fibroscan soon after diagnosis, which read 22, I had just had another which is now 44.

I have a perfect diet according to experts, exercise regularly, so am at loss as to what is causing this decline.

Apart from fatigue I dont seem so far to have any other outward signs of the problem.

I have take a blood thinning tablet for alta fib, plus Tamulosin for lazy uric muscle, plus martizapine for mild depression /insomnia

Anyone got any idea what is causing my problem?

[AyrshireK]

What tests have they done to establish the cause? Have they done a liver biopsy to look at the liver at a cellular level? Have they taken blood tests specifically to test the liver?

There are many causes of liver disease and alcohol is only one of them. There are numerous viral hepatitis's which can be tested for in a simple blood test and ruled in or out quickly (and treatments available to cure in the case of Hep C & prevent progression in the case of Hep B), there is non-alcohol related fatty liver disease which is massively on the rise in the western world due to diet and exercise plus medications and links with diabetes. There are several genetic conditions which can affect the liver plus numerous auto-immune conditions. Medications can affect the liver so that might be a factor.

It would be handy for them to establish a cause of your cirrhosis then it can be treated or amendments made. However, there are numerous folks on here who have cirrhosis where the cause was never established or where the cause can't be treated and it's just then a case of managing the other side effects that can arise as a result of cirrhosis. I hope you are being monitored as regards the cirrhosis - minimum is usually 6 monthly bloods and 6 monthly ultrasound or CT scan to check the liver for appearance of any lumps, bumps or irregularities plus the other abdominal organs and for presence of fluid.

My t-total hubbie for example was diagnosed with cirrhosis in April 2012 following a massive bleed for varices in his oesophagus - we never even knew he was ill until then. A biopsy proved inconclusive but auto-immune antibodies suggested an auto-immune cause of his cirrhosis. Later biopsy just confirmed a diagnosis of auto-immune cirrhosis with no ongoing inflammation - burned out Auto-Immune Hepatitis. He receives no treatment for cirrhosis only for the various side effects he has from it and has regular monitoring.

Hope they can get to the bottom of your condition and monitor/treat you properly going forward.

Katie

[JimmyJackson in reply to AyrshireK]

Many thanks Katie. I have had recent endoscopy & only one very small varices which will be monitored, never had a bi-opsy.

Some years ago had a blood test, which showed a enzyme oddity & was advised to have 6 monthly blood test.

I did this nothing ever showed up & still doesn't from the many blood tests I have had, pretty sure that I have never had hepatitis. Something of a puzzle, as there must be a cause for the deterioration shown up by the fibroscan.

jimmy

[AyrshireK in reply to JimmyJackson]

Fibroscan numbers can be increased if you have ongoing inflammation. My hubby has never had a fibroscan - his consultant said there is "no point, we know you have cirrhosis and fibroscan isn't going to add anything to the diagnosis". Just all about treating the situation as we know it and dealing with any side effects.

Have you been having 6 monthly ultrasounds - sadly a cirrhotic liver is more prone to developing lesions including cancer. Regular U/S are designed to pick these up as quick as possible to allow positive intervention and treatment.

Make sure you take ownership of your condition, ask questions, push for tests etc.

Katie

[elle-boop]

Hi, you must be in shock to some degree given your lifestyle and diagnosis. It’s not easy news to absorb. The liver can be damaged by many things, lifestyle and diet, your weight ie are you obese or overweight and carrying a lot of internal fat around your organs, medication can cause serious liver damage in some people, even certain types of antibiotics. The other big issue is disease related cirrhosis, auto immune diseases (I have this). You’ve got a diagnosis but not a full diagnosis and your within your rights to ask a lot of questions and ask for additional tests. If your liver status is still deteriorating then the dr’s have a responsibility to find out the cause. Be brave and push for answers, you need them!!

Take care and your not alone. E

[JimmyJackson in reply to elle-boop]

Many thanks, mine certainly not due to obesity, so am going to pressure Drs / Specialist, the auto immune option intrigues me, as not sure what this is or how it is diagnosed

[elle-boop in reply to JimmyJackson]

Auto immune diseases are very common and it basically means your immune system is faulty and attacks healthy tissue instead of a foreign invader as it’s meant to. There are a few different types of auto immune liver diseases and when the liver is under attack the cells swell up to protect themselves and therefore don’t function adequately. Long term these attacks cause fibrosis and then cirrhosis and at that stage the scarring is permanent.

Do you know how the liver works? What it does in the body and how it can regrow? It’s the only organ that can regrow which is great news really although if it’s under constant attack it won’t be able to.

Various tests are done by gp’s etc to determine the oresence of auto immune disease. They can check for inflammation markers and for faulty proteins. These are just blood tests and will give answers quickly. A liver biopsy would confirm the type of auto immune disease although in some cases it’s not actually necessary and from experience if you don’t have to have one good, it’s invasive.

You can also ask for ultra sound scan, this will check for any rumours etc and might be reassuring for you.

My history is of childhood aggressive auto-immune hepatitis, I’m 44 now so long history and many tests etc.

Auto immune diseases are treated very successfully with a combination of immune system altering drugs. They work quickly and can stop the attacks thus preserving liver function. If you do have this type of disease then quick treatment intervention is important.

[JimmyJackson in reply to elle-boop]

Very many thanks , I have had numerous blood tests, all of which have proven ok so would presume that this possibility would have been considered, but will see my Dr next week & check this is the case.

[elle-boop in reply to JimmyJackson]

I would hope they have done these tests already.

It is possible you have picked up a viral form of hepatitis and it’s now resolved leaving some damage behind. In these cases because the source of the damage is not active any longer a diagnosis is not obvious. My only concern in your case is if the damage is ongoing. If it is then it suggests there is some active source of damage in the body or a blockage has formed slowing the livers function currently.

If it is a tumour be reassured that 95% are benign in cirrhosis patients and they can also be removed easily. Some can be dissolved or removed by inserting a letter no needle into it. Cirrhosis patients are prone to cysts, lumps and bumps forming. The ultrasound is the key to keeping an eye on those things.

You’ve probably got a lot on your mind and I’m hopeful if you communicate with your dr’s it will be dealt with quickly.

[freddie76]

There are many reasons for cirrhosis unrelated to alcohol.

Genetic, immune and many other reasons.

You need to see a hepatologist to be investigated for the cause.

Good luck

[Hidden]

How long have you been taking the cocktail of drugs? Mirtazapine and tamsulosin should be taken with caution by someone with liver disease & you didn't mention the name of the blood thinner you take but I'm betting that it too should be taken with caution for someone with liver disease. The warnings that come with each drug mean that each drug on its own stresses the liver. Combine them together & use them for a time & liver damage like you have comes as no surprise.

In the US the medical system is the third leading cause of death after heart disease and cancer. I'd either be dead or have cirrhosis if I'd blindly trusted the doctors I saw after I started to feel very ill from acute hepatitis. My long term GP never warned me what blood test values like a persistent low platelet count meant. After I started to feel very ill & I looked it up here is what I found:

Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease:

"A normal platelet count is 150 to 450 x 103/microliter. If a patient has a value lower than 150 x 103/microliter, thrombocytopenia is said to be present, and cirrhosis should be contemplated as a diagnosis."

My platelet count has been below normal (normal 150 to 450 mine 135) for years but my GP downplayed its significance as well as other blood test values like a low white cell count, high urea, high creatine, high ferritin, low iron saturation, high B12, high albumin, low MCHC & gave me more painkillers telling me that I was fine.

When I asked my GP about my high vitamin B12 level he told me it was high because I was super healthy but when I looked it up I found that it was because a damaged liver can't hold B12 so it releases it into the bloodstream!

Now I'm actively involved in looking after my health & liver!

[JimmyJackson in reply to Hidden]

Thanks for your reply & interest

I have atrial fibrillation & taken rivaroxaban 20mg for last 18 months, to prevent strokes.

Tamulosin have taken for some years, as have lazy muscle which controls urination, not due to enlarged prostrate

Mirtazapine started recently, as suffer badly from insomnia/ mild depression over many years. I did take amyltriptaline although only 10mg for many years, up until about 5 yrs ago & always wondered if that could be the root cause, as I stopped due to an adverse reaction which then largely cleared up

I know that there are warnings on leaflets regarding kidney/ liver, but have asked GP & specialist if likely to exacerbate problem, with negative response from both & it is also true that the drug companies understandably like cover themselves

Having said that, something is causing a deteriation, so you may well be correct

Could I ask if you have any specific medical background ?

[Hidden in reply to JimmyJackson]

I have no medical background.

I've taken tamsulosin in the past & it nearly killed me. Like you my prostrate is enlarged & I took it prior to having laser surgery on my prostate. I wasn't warned by the surgeon to stop taking it a couple of days before the surgery. After the surgery my blood pressure & heart rate dropped dangerously low & the nurses looking after me were worried that I might die. When I looked the drug up on getting home I discovered that it was dangerous to combine it with an anaesthetic. I informed the surgeon about this so he could warn future patients to stop taking it a couple of days before an operation before one of his patients died & he was sued for medical negligence. The drug can also permanently weaken the sphincter muscle in the eyes that controls the iris which can cause problems with having artificial lenses implanted because of cataracts.

[pushthrough]

Jimmy I just saw your newest post and I applaud you for all your hard work. You are 84 now and you have defied the odds! I salute you! I’m 39 so you have brought additional hope to me. My kpa was around 18.