Hello

[velvetunderground]

Hi All - first post here, although I've been lurking for a while. I though I'd write an introduction and explain what I'm doing here ...

I've just turned 50, I'm very healthy - obsessively so my wife would say! I eat right and live in the gym, certainly no symptoms of anything. This summer I thought I'd have a heath check, as I hadn't seen a doctor for literally decades (other than vaccinations for holidays and the yearly flu jab). Well everything checked out perfectly and they said they'd send me the results of the blood test they did in a few days. However when I got those I was told my platelets were a little low and I should see my GP, probably nothing to worry about.

I made an appointment and my GP run a wider set of bloods. The following week she told me that although my platelets had now just bobbed into the normal range, my ALT and Bilirubin levels were elevated (not crazy, about twice the level they should be). She suspected some issue with my liver. This was at the beginning of August.

Now I used to drink quite a lot a few years ago, but for the past 3-4 years I'd stuck religiously to the government guidelines - 14 units a week. However on hearing the word 'liver' I cut out all alcohol immediately. I had some repeat tests a few weeks later showing no real difference. I went straight to a private clinic and had a fibroscan done which had a score of about 9.5 - clearly a problem, although the consultant couldn't see why my LFTs should still be elevated. I got a referral to a hepatology consultant and so began a barrage of tests. Numerous blood tests over the course of a couple of months, including laying off exercise for a few weeks (that was harder than giving up the booze!) and an Ultrasound. Everyone was still confused by the results. Finally we decided to have a biopsy which had given a tentative diagnosis of Nodular Regenerative Hyperplasia - pretty rare I understand, not curable and unless a cause is found progressive. Ultimately Portal Hypertension is the risk. I'm relieved to have some diagnosis, although it's not the result I wanted. Also relieved to be told it wasn't alcohol related, so not something I cold have done differently - I've been told I can drink a little but so far I can't bring myself to and remain tee total. I'm currently struggling over whether to allow myself a couple of glasses of wine on Christmas day - my consultant says it's fine, but I' note sure if I can bring myself to - we'll see how I feel on the day.

I've since had an endoscopy (currently no signs of hypertension). While he was down there, he took numerous biopsies and I'm waiting for those results. This week I also had an MRI scan. I asked for copies of the images which are fascinating, but I've no idea what I'm looking at and whether it's good or bad! I've got another appointment early January, so hopefully get some more news then.

Anyhow - sorry for the long post. No real questions, although I'd be interested to see if anyone else has NRH.

Wishing you all health and happiness

Paul

[jojokarak]

Hi Paul and sorry to find you here, I can't help with your diagnosis but I am sure someone will know something but I was hoping to just give you a bit of hope...

Having no portal hypertension is a great thing, your kpa score (fibrosis) is really good .. mine is 24 kpa and I am 2 years post transplant and at the moment my consultant is not worried, I have started on that one by cutting all sugar and fats out of my diet again and alcohol...

As for your personal dilemma of having a drink on Christmas Day, don't feel guilty if you have one or two, you are aware of what is going on and I am sure are very sensible and wouldn't hammer it ...

I would also like to say even in the 2 years since I had my transplant the doctors are making new discoveries and they are behind the scenes doing a lot of research especially on liver disease because it is a silent killer, you have to count yourself lucky it's been found now so you have the opportunity to do as much as you can .. at the moment with your scores you are right at the beginning of your journey and I am sure there is things the doctors can do as well as you ... Good luck and enjoy Christmas you can't do anything more than what you are, so what's the point in stressing out ...

[jojokarak]

I have just done a bit of research on your condition and wow it is rare only 200+ people have been diagnosed with this in the last decade, but it is encouraging to read that it rarely requires a transplant and also that you have no varices ... I just read the main thing you need to do is have a low sodium diet, which is the norm for most of us with liver problems and also the earlier the diagnosis the better which it seems you definitely have been ...

It's horrible having an illness but I think you have everything on your side

[velvetunderground in reply to jojokarak]

Thanks for the replies Jojokarak - I don't think my diet could be any better, for years I've not eaten processed food - I have always cooked and maintained a very balanced diet. My basic rule is never to eat anything with a list of ingredients. Actually I occasionally worry about not having enough sodium in my diet!

Yes, NRH is rare - apparently my biopsy slides caused much discussion at the weekly panel my consultant attends, he is also sending them to Birmingham for a second opinion. I've heard it's more usually diagnosed post mortem, so it probably makes a nice change to fine a living patient to play with

Best wishes

Paul.

[jojokarak in reply to velvetunderground]

Well Birmingham a fantastic hospital and if you're diet is that good that's the thing what's probably helped you in the long run x

[AyrshireK]

There are indeed a few other members of our merry band who have NRH. I just did a quick forum search and if you follow this link it'll take you to other posts and identify other posters who have the same condition. healthunlocked.com/britishl...

All the best, hope you find some answers among all those threads.

Katie

[velvetunderground in reply to AyrshireK]

Thanks Katie - I'll have a read through!

[Julie8]

Thanks for sharing with us, try not to worry and enjoy your Christmas day

[velvetunderground in reply to Julie8]

Thanks Julie - I appreciate the reply, I hope you have a restful and enjoyable Christmas too.

[1football]

Hi Paul

I do post on here to those who have liver issues and ask regards alcohol and it’s always a no from me but for the first time Am going to say have that couple of glasses as your clearly aware of your diagnosis which is unbelievably unfortunate and not drink related I just hope they keep you as healthy as you sound

Good luck

Huw

[velvetunderground in reply to 1football]

Thanks Huw - I have had an awful lot go right in my life, I am extremely fortunate compared with the millions of people living with war, famine or extreme poverty! I am trying to take this one step at a time, but sometimes I find it difficult to adjust to suddenly not being at 100% particularly as I am completely asymptomatic. I appreciate your insight, and I am leaning towards having a couple of small glasses, although I must say going tee total these past 5 months was much easier and more rewarding than I expected. I've had a few nights now where I'm the only sober one at the party and it's quiet interesting to see how everyone else behaves after they have had a few!

I hope you and yours have a healthy and happy Christmas.

Best

Paul.