Gallstones and intermittent jaundice

[MarkD6701]

Hi All,

I've got a Myeloproliferative Neoplasm which caused a blood clot in my portal vein and damage to my liver.

As a result, every few months I get really bad heartburn and feel unwell for a few days. But then it goes away and all is well.

However, a few weeks ago I got the heartburn but a few days later I ended up with jaundice for the first time. I went to my GP and ended up being admitted to hospital for a few days due to raised LFTs and high INR.

But whilst in hospital my jaundice started to disappear along with my stool colour and urine returning to normal.

I had another bout of indigestion a couple of weeks ago and my stool turned pale etc, but then returned to normal after 3-4 days.

My doc thinks it's related to gallstones as I had a CT scan & ultrasound in hospital and apart from a slightly inflamed pancreas there wasn't anything else detected apart from my enlarged spleen and damage to my liver.

I just wondered if it's fairly normal to get jaundice that comes and goes?

Best regards

Mark

[Hidden]

I've no idea Mark ! Maybe worth you phoning your surgery and ask your GP?

[Chelle_]

Hi Mark. I have MPN-PV + along with a clot in my portal vein and Cirrhosis of the liver. I have jaundice that comes and goes. In particular when I am tired and feeling rather unwell I am quite yellow. How are you doing? Are you on medication?

[MarkD6701 in reply to Chelle_]

Hi Chelle,

How often does your jaundice last and do you get any pain? Mine lasts for about 2-3 days but as yet I haven't gone that yellow. I get a very slight nagging ache in my back and either get bad heartburn or feel very winded, which can be uncomfortable.

My liver is causing a bit of confusion. 3 years ago, when I was in hospital with my blood clots and surgery they thought I had cirrhosis because of what they saw on the CT scan. However, a subsequent fibroscan said it wasn't. When I recently had another CT scan they again said it was cirrhosis. However, it might actually be Nodular regenerative hyperplasia which they are picking up.

I'm on Hydroxycarbamide, Lansoprazole and on clexane.

[Chelle_]

Hi mark. The issue I have is my spleen; it’s taking up far too much space. Pushing on my tummy and Liver which is causing me pain. I have almost shooting pains around me Liver (livers can’t feel pain but the sac around it can) I get jaundice but it’ll be fore a few days. I don’t have intermittent back pain but I do have bone pain, I am breathless quite a lot because I am anaemic and my spleen pushing against other organs.

I’ve never had a fibeoscan. Which hospital are you under for Hepotology And Heamotology? I’m under 3 different Hospital.

I think because there are a lot of things that over lap MPN and Liver it can be confusing....x

[MarkD6701 in reply to Chelle_]

Hi Chelle,

I'm at Lewisham and apparently a fibroscan can work our whether you have cirrhosis or not without the need for a biopsy. How did they diagnose your cirrhosis?

[Chelle_ in reply to MarkD6701]

I’ve never had a liver biopsy neither. I’ve been under Kings since October 2013. I have had scans; MRI/CT/US etc. They didn’t know I had the PV when I was first diagnosed.

I’ve had taps on my ascities, varices banded all sorts of medication since. I’ve been listed for liver transplant since October 2016.

[MarkD6701 in reply to Chelle_]

Hi Chelle,

That's something new I've learnt. I always thought you either needed a liver biopsy or fibroscan to work out whether you had cirrhosis.

Originally when I went into hospital in Dec 2014 the CT scan showed coarse heterogeneous texture of my liver which they thought meant cirrhosis. But as my LFT's were normal it apparently didn't make sense. Once I'd been discharged they sent me for a fibro scan and as I didn't have any fibrosis they said I couldn't have cirrhosis.

[Chelle_]

Well you’ve been through it too. I was informed that I had liver cancer because my tumours replicated that of HCC but a further check said no. My LFTs are pretty good too. Apparently the bits that are working are working well.

I’m on Hydroxycarbamide, propranolol, spironalactone, fruesomide, Sando K, movical, lactulose, omeprozole, warfarin and something for sickness.

I’m like a walking pharmacy

[MarkD6701 in reply to Chelle_]

Hi Chelle,

Luckily, I'm don't feel too ill so hopefully my liver is in fairly good shape. My big issue at the time was a clot in the mesenteric vein, leading to bowel ischemia. As that was cleared up with surgery I was then just left with a clot in the portal vein. But after the fibroscan it was diagnosed as being non-cirrhotic portal hypertension. Would be disappointing if it's gone to a state of cirrhosis.

[Chelle_ in reply to MarkD6701]

Well I wish you lots of luck! I hope it doesn’t go to Cirrhosis.

[AileenHolden]

Hi Mark,

My name is Aileen. I was diagnosed with NCPH last year while I was about 18 weeks pregnant. I am getting ready for a TIPS procedure. I was just googling some information when I came across your post and wanted to reach out. I read through some of the other comments as well.

I had my spleen removed in 2002 without any explaination really why it became enlarged. I was told at that time I had a small, faded blood clot near my liver but not to be worried. Flash forward to 2016 I was hospitalized and received about 3 units of blood. Still at that time no reasons why. I had a scope done with 3 bands due to esophageal bleeding. The one doctor mentioned portal hypertension and said for me to see a blood doctor (hematologist)

He sent me to a hepatologist. By then it was too late. I had a bleed during pregnancy. Fortunately baby and I survived it all but it was very scary.

I live in Canada and have had great care since this diagnosis. I am starting to reach out to other people who have similar issues to find out more info.

My TIPS will be done end of June. Fingers crossed this will stop the bleeds.

Hope this helps you in some way