Liver results

[Buffy2]

I had a ultrasound in August which showed Coarse echotexture, then a fibroscan 2 weeks ago showing a reading of 7.9 for fibrosis. I will be seeing a consultant in a few weeks but until then I don't know what I should do, or even feel! I wondered if anyone else has had similar reading/results? and if so what did you do to help symptoms etc. I veer from feeling worried one minute to thinking completely positive the next. My condition has been caused by iron overload due to having hemochromatosis.

[Hidden]

Hi buffy

I don’t have the knowledge to comment knowledgeably - if that makes sense!

Not totally sure what you mean by help the smptoms..

Psychologically, having been through the tp process (took a long time for me) you should, and I can tell you’re trying, concentrate on the positive aspects - yes, easier said than done! But if you do end up having to have a tp to make you well again I can tell you that (for me anyway - and lots of others from what I’ve read on this forum) it has been the best thing since sliced bread. It isn’t until now that I have realised how much I had gone downhill! Not that you have of course!

Medically, well obvious things are no alcohol, eat sensibly but don’t get obsessed about it. At my clinic yesterday the dietician told me to eat normally! I had told her about the efforts I had made which in part, it seems, were unnecessary 😁

Good luck!

Miles

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[Buffy2 in reply to Hidden]

Thank you Miles for your response. I just want to get the appointment with the consultant out of the way so that I can do whatever it is I need to do. Good to hear that you got sorted, it helps to hear other peoples success stories

[AyrshireK]

Has the diagnosis of haemochromatosis come out of the blue or have you known about that for years? Is it now the advancement of liver damage that is causing concern? I've attached a link to the British Liver Trust page on the haemochromatosis and on it there is a section about 'Looking after yourself' so it might be of some use to you.

britishlivertrust.org.uk/li...

In the interim before your next appointment i'd read up, get a list of your symptoms made up and a list of any questions you want to ask and prepare to use the time at the consultation effectively to get the most out of the appointment - hopefully take someone with you so that two pairs of ears listen to the information being passed - this certainly helps with working out the med speak later. T

We have got members on the forum who have been all the way to transplant due to haemochromatosis but they haven't posted in some time (living flourishing lives post transplant no doubt).

All the best,

Katie

[Buffy2 in reply to AyrshireK]

Hi Katie

I was diagnosed with hemochromatosis over 4 years ago. During this time I had a liver biopsy that showed I had overloaded, I then had numerous venesections. A new consultant insisted I had an ultrasound in august, which showed the coarse echotexture, and then the fibroscan 2 weeks ago. I can't help thinking they should have done something more 4 years ago. Thank you so much for the info and the suggestions, it helps to know I am not on my own

[AyrshireK in reply to Buffy2]

You are probably right, they should have been keeping a regular eye on your liver after a diagnosis of haemochromatosis and it sounds like it has advanced somewhat with the coarse echo texture on ultrasound. Sadly many people find out very late that they have it and I hate to say it some also develop tumours due to it - there was a chap in for liver transplant assessment at the same time as my hubby who had liver cancer due to haemochromatosis - he was 71 and never knew he had it till they found the tumour. Have your nearest and dearest and any kids if you have any also been tested for the condition?

Hopefully this new consultant is more on the ball, I would be pushing for 6 monthly ultrasound scans as is customary with cirrhosis monitoring to make sure there are no other changes in the liver or if any arise they can be dealt with in good time.

Wishing you the very best of luck.

Katie xx

[Buffy2 in reply to AyrshireK]

Apparently 1 in 200 people have hemochromatosis but very few get diagnosed! One of my 2 sons has had the genes test and is ok, the other one keeps saying he will go and have it. Thank you for your best wishes, I hope you are in good health.

best wishes

Marie

[Hidden in reply to Buffy2]

Just some information course echo on an ultrasound is not conclusive for fibrosis it can also indicate fat or may just be how your liver looks normally do u have an prior ultrasounds for comparison. The fibroscan is a bit over normal so there may be some stiffness but I'm sure you will be in goods hands now and will get some answers. If I were your I would be feeling pretty positive now.

Take care

Boone

[Hidden]

In the mean time all you can do is eat well and stay positive. Avoid processed food added salt and basically eat a plant rich diet. Coffee is actually good for the liver.

[Hidden]

Boone is right. And with a fibroscan of 7 I'd be happy about that 😊

[ENuk]

My family have a history of haemochromatosis however it wasn't detected many years ago. Thankfully earlier diagnoses have improved.

Your fibroscan is not too signifcant, mine is similar (due to PBC) and I will have a scan yearly. I understand however the fibroscans are relatively new so perhaps not widely available 4 years ago.

Have you contacted the haemochromatosis organisation, they should be able to offer advice on the management plan.

Do you know your liver function levels results?

[Buffy2 in reply to ENuk]

After I had the ultrasound I had a phone call from my consultant regarding the coarse echotexture and he said I have chronic liver disease. The fibroscan was to see what was happening inside of the liver. He said there is no fatty liver. I see him next week, so hopefully he will explain what the results mean. I am not stressing over it, I am more annoyed as I have done everything I was advised to do when I was diagnosed with hemochromatosis 4 years ago. My gamma gt levels are always high when I have blood tests. Thank you for your reply, best wishes

Marie