Should I be concerned, or not?

[G7ENM]

HiI was referred to Hepatology by Haemotology in January as my ferritin levels were fluctuating.

I had an ultrasound and a fibroscan and eventually saw the consultant in late May. He was very reassuring, told me my liver is "mildly fatty, has some inflammation, is relatively stiff with some scarring and has poor blood flow."

He advised me to lose weight and reduce my cholesterol, requested an endoscopy, ultrasound every 6 months and said he would see me in a year.

About a month later he wrote to me confirming what he had said and included these numbers - CAP 232, TE 19.7 kPa, he also said my liver enzymes were in the normal range.

Up to this point I was not concerned but when I went for the endoscopy I saw that my notes referred to cirrhosis, no problems were found and that paperwork says "chronic liver disease".

Sorry for the long post but I really need guidance, have I been lulled into a false sense of security by the lack of urgency at the hospital or should I be taking this very seriously?

Thanks in advance for any words of wisdom

[AyrshireK]

I think you perhaps need to seek some clarification as to your actual diagnosis.

It looks very much like it is cirrrhosis from what you've seen and from the reports you've had - "relatively stiff with some scarring and has poor blood flow." (If scarring is mentioned it generally means at minimum some fibrosis with cirrhosis being when liver is stiff and in your case it is restricting blood flow). You've seen cirrhosis on some paperwork and chronic liver disease on a report - this too tends to indicate it is cirrhosis. Other than where alcohol is the cause of liver disease a fibroscan result of 19.5 kPa would also put you in the cirrhosis bracket AND you are definitely on the cirrhosis pattern of treatment and monitoring i.e. 6 monthly bloods, scans, endoscopy and an annual consultation (though some people do see their consultant 6 monthly or more frequently).

Hopefully they have identified the cause of your scarring and you can work on this - was the ferritin a red flag? Did they think the high ferritin was indicative of anything i.e. there is a genetic condition called Haemochromatosis where high ferritin and high iron levels are the cause of the liver damage OR in some cases a damaged liver can be the cause of high ferritin. To check for Genetic Haemochromatosis they would run some genetic tests - has anyone else in your family ever suffered from liver disease?

If you now have cirrhosis it is key that they identify the cause and then you can address it by either having the condition treated or indeed by making life style changes. A CAP score of 232 doesn't indicate much in the way of fatty liver (less than 11% of your liver is fatty so it doesn't even correlate to Steatosis Grade 1 which is where CAP is 238 to 260 dB/m.

It's a case now of keeping an eye out for any symptoms that might indicate a worsening of your condition and if you can identify the cause and get it treated.

You don't need to panic nor hunt out any minor potential symptom but just keep on doing what you can to live healthily and you can live a long life even with a cirrhosis diagnosis. The BLT has a page all about Cirrhosis - [ britishlivertrust.org.uk/in... ] it's good to educate yourself on it so you can ask pertinent questions at appointments but don't get hung up on every potential niggle. We found it incredibly useful to keep a notebook which we filled in before every appointment - we listed current meds and doses (they always ask), any symptoms or concerns you've been having and all the questions you want to ask. Take a pen to jot down answers.

Katie

[G7ENM in reply to AyrshireK]

Thanks so much for your reply. I have been tested for haemochromatosis, it was negative.I think there are still some tests being processed and the doctor did say if they didn't give him an answer he would do a biopsy so guess he will be in touch again when all the results are in, he seems to like to write and post letters, which I think is very old fashioned and slow!

I did question if the scarring could have been caused by the high doses of chemotherapy that I received to treat Acute Myeloid Leukaemia (I am in remission from that) but he dismissed it.

I find it odd that I was never asked if I drink alcohol, I do but not very often and only one, everything I read says to avoid alcohol whatever the cause. I won't drink now but it would have been nice to be told!

I am trying not to panic, but the word "cirrhosis" is frightening. If I haven't heard from the consultant again in the next month I will be asking questions re my actual diagnosis. I feel, and look, well so I am trying to focus on that and improve my diet, although I don't think it's too bad anyway.

Thanks again

Sue

(guess I may be quite local from your user name, I'm near Dumfries)

[AyrshireK in reply to G7ENM]

Yes, just up the road in Ayrshire. Hope you get some answers. My hubby had cirrhosis diagnosed completely out of the blue though he was very symptomatic and as a none drinker he had to go down the biopsy route for diagnosis and it was deemed his was auto-immune liver disease (potentially a drug induced liver injury from some prescription meds over the years).

He was diagnosed in 2012 and on 24th June this year received a liver transplant so we are three weeks post t/p on Monday and things are going in the right direction.

Katie

[G7ENM in reply to AyrshireK]

Good luck to your husband. I had a stem cell transplant to treat my leukaemia just over 2 years ago, not quite the same thing but still a big experience!Sue