What are your symptoms of regenerative nodular hyperplasia and is it worth doing a CT scan?

[Vkusnyatina]

Wanted to ask of those who were diagnonsed with RNH what you symptoms were and how it was eventually diagnosed (and whether you went through a battery of tests, all showing normal liver function)? It appears this has a lot of cirrhosis symptoms but is very difficult to diagnose (only a specialised form of biopsy can do so, from what I'm reading?). I've had an MRI (found 2 liver lesions and a bleeding on the spleen?), an ultrasound (which recommended I have the MRI and which ruled out cirrhosis) and a fibroscan, which places me in F0 category (4.2 kpa, 174 CAP). Yet I have a ton of symptoms of liver damage and have done for some time. I was going to do the final test I haven't yet done in a few weeks - the CT scan (cannot afford a biopsy and my GP would never order one for me , citing normal blood test results) - does anybody know if this is worth doing or it won't give me anything the previous scans haven't already shown? Also, how is RNG/NRG usually treated, if at all? It seems it still gives HE and portal hypertension, just of the non-cirrhotic variety? Cheers!

[Oztrax]

I am thinking you mean NRH ? Nodular Regenerative Hyperplasia.

NRH essentially is extra unneeded liver cells growing (hyperplasia) which crowd out the existing healthy cells essentially squashing them and the small veins/arteries around them. This can then lead to HE and portal venous hypertension issues, but usually not as serious as cirrhosis can cause.

There is also Focal Regenerative Hyperplasia which is completely different and is more of larger lesions on the liver, usually benign.

A liver biopsy is essential to confirm NRH, as only under the microscope can the changes in the cells become visible.

I have not had my biopsy yet either, my fibroscan was 3.53 kpa yet my previous ultrasound report said I had “a nodular contour suggesting cirrhosis “

Highest my LFTs have been is AKT 70 ALT 90, so I relate to what you are experiencing.

All other blood tests normal.

In my case, last 2 years have had: increasing fatigue, lack of appetite, weight loss 10 kgs, headaches, tinnitus, inner ear issues. Last few months muscle and joint pain, nausea.

[EEvans]

hi, I have had 3 liver biopsies done, the last one about 18 months ago. It was noted at that time that my liver showed some nodular hyperplasia and perisinusoidal fibrosis and at the time but no cirrhosis. My fibroscan score was f0-1 st that time. I have been on beta blockers for the past 18 months. I do not have fatty liver and try to keep fit. I do have non cirrhotic portal hypertension and had a fibroscan 2 weeks ago and unfortunately things have progressed and my fibroscan score was 9.5 therefore an F2. I am hoping to see my consultant soon so that I can see what the plan is from now on. All my liver function tests are normal apart from an elevated gamma gt. I do not drink alcohol. My platelets are low 40000 as my spllen is enlarged. Ask to see a liver specialist.

[Vkusnyatina in reply to EEvans]

Thank you so much for responding and I am really hopeful that your next appointment with the consultant will clear things up for you. Assuming you don't have symptoms of HE or severe fatigue? With low platelets, does your blood struggle to clot? I'm finding this a lot with my skin seemingly now paper-thin and a lot less durable. I form tiny cuts on my hands and bigger cuts take ages to heal! And the non-stop fatigue and terrible sleep really don't help me to work an office job, even though I've somehow managed to hold this down for the past 9 weeks.

[EEvans in reply to Vkusnyatina]

thanks for your reply awell. My blood clotting is normal, just had a test done recentlyy. Not overly fatigued, I like to do a lot of road cycling. Not doing as much as I would like as a fathet to two kids! Are you under the care of a liver consultant? If not you should ask your GP for a referral. If there is a long wait go privately if you can.

[Vkusnyatina in reply to EEvans]

Going private is exactly what I'm doing, thank you

[Fibro2021 in reply to Vkusnyatina]

I was diagnosed with NRH by biopsy only ( I had four biopsies in total). My first pathologist was poorly educated to look for signs of NRH. I sought a second opinion from a professor pathologist specializing in liver pathology in private. My blood tests showed high ammonia levels and an inverted AST/ALT ratio, as well as a slight decrease in platelets. Since the onset of symptoms, my skin has become more pigmented and parchment-thin. I had two contrast-enhanced CT scans and an MRI which proved useless, as did the US. CT is considered uninformative for the detection of NRH. It is possible to see only an increase in the diameter of the portal vein or large spontaneous portosystemic shunts, but in my case they are absent.

[Oztrax]

does anyone with NRH get muscle pain, eg not joint pain

[Fibro2021 in reply to Oztrax]

Yes, I get muscle pain.