Weird liver medical advice (or best guesses!), in desperation

[itsjustashotaway]

Sorry for the medical question, I know it's a can of worms and I think what I'm looking for is a brilliant doctor thinking outside the box, but here goes;

DH had a weird episode almost exactly three years ago, 2020 just after lockdown. Very itchy and yellow skin, yellow eyes, dark urine, exhaustion, pain like indigestion, vomiting. Went to GP on day 3, took blood and sent immediately to the local hospital for tests, which showed very abnormal liver function. The ultrasound showed some mild inflammation but no known hepatitis was found in blood results nor anything else. It settled and he returned to normal.

It flared again six months later, and six months after that, albeit more mildly. He was back in hospital the second time and not the third, but summoned to the liver clinic all the same who suggested they monitor blood every 3 months via GP. Then there was a year of almost no symptomatic flares and the blood showed readings returning to normal but never actually within normal bounds.

Six months ago he had another flare and they wrote him up for a biopsy. It flared again almost every month until the biopsy two weeks ago, then immediately after the biopsy (evening of, no surprise), last week and now again this week.

He experiences a feeling of fulness after eating that becomes like indigestion pain but severe, apparently completely stops digesting and vomits several hours later, the pain lasts another 6-12 hours, wee goes dark, skin goes a bit yellow and he's tired for 48h, then back to normal.

The biopsy shows nothing at all - a very mild degree of fatty liver and "some sludge", no inflammation and no scarring. They have referred back to the GP to start from the drawing board with what else it might be, but that appt is in a month, he appears now to have these flare ups almost half the working week (he is a young man with a young family and being unable to function for a day or two weekly isn't really an option) and the last time he saw the GP they had absolutely no ideas so I am a bit nervous about how we get to the bottom of this.

Is anyone mega mega bright or with experience of this (or both!) able to shed any light? Any guesses? I wondered if it could be hormonal; linked to pancreas or gall bladder (bile seems to be implicated) - but I know nothing at all.

I would be SO grateful for any thoughts. MN was massively helpful to me when TTC 5 years ago and as a new mum and I can't think of any other unexhausted leads here. The worry of it is starting to mount. Post is a bit / very outing but I don't think it matters in this case!

TIA x

@Loopyloo159 not yet, I now hope they'll go there next!
@GreyTS that's really useful - thank you (silently praying none of these delights are contagious...)
@Oldtiredfedup yes lots of imaging prior to the biopsy and it only ever showed the slightest inflammation, and not always. At least three scans in three years plus the endless blood tests and then the biopsy two weeks ago.

@itsjustashotaway Funnily enough the itching stopped pretty much the moment I was diagnosed. If my bloods didn’t say it was still active I wouldn’t have known.
I had lots of little symptoms just before diagnosis so much so that I even took a covid test on Christmas Eve as I felt so awful. Tired, lethargic, feeling feverish one moment and cold the next, dark urine, light faeces, unable to eat / feeling full. I was 34+ weeks pregnant so just assumed this was normal for late pregnancy. The ups and downs sound so familiar as I felt fine the day I was induced.
Really hope you get answers soon. 💐

thank you so much @FarmersWife2019 I really appreciate the steer and we will definitely raise it as worth exploring. It sounds so awful, I'm really so sorry for both of you!

I'll update here if we get anywhere, anyway - I am so grateful for all the advice everyone x

When i had an infected gallbladder and ended up in hospital they were convinced it was kidney stones and did a CT. Kidney was fine but they accidentally caught an image of my gallbladder and there was the problem.

For me, gallstone attacks were a pain in my right side on my back around bra band level, it went through to the front like a knife stabbing me and then being twisted for hours. I felt nauseous and no position relieved the pain, I would curl up, stretch out, stand, lay on the floor, everything but it just wouldn't reduce at all and would last for several hours the fade to a bruised feeling for another 24 hours.

@FatAgainItsLettuceTime that sounds awful and more or less exactly where DH is right now. He keeps saying he thinks he's being wimpy but I think it sounds like he's absolutely not. Anyway - with any luck all this will mean he finally knocks back his dairy milk sponsored cholesterol and saves his life via his arteries in 30 years, who knows. Thank you so much x

Gallbladder needs checking. Look at Gilbert's syndrome. I have that and when I am otherwise unwell (say an infection), my jaundice gets worse and I itch a lot. Bilirubin levels are always elevated if I am ill, and settle at a lower (if out of normal range) level when well.

Thanks @scoobydoo1971 really appreciate the tip x

Been to the GP today, blood gone off to lab and will likely commission another ultrasound, then MRI if required. Will update the thread in case useful, thanks again all! X

Great news, a step forward. My gallstones were confirmed with an ultrasound and MRI.

DH tanked again from about midday today, GP said go in to A&E and after a loooong wait he is now admitted so they can watch one of these episodes play out (never before has it actually failed to resolve after the usual cycle so this is uncharted territory). The doctor he's seen is certain it is an auto-immune hepatitis but I pretty certain we've ruled that out. They seem super reluctant to consider the gall bladder but we'll keep talking about it..!

@itsjustashotaway
Sorry to hear that your DH has had a bad flare up of whatever it is but on the bright side fingers crossed that now he's in hospital that they get to the bottom of what's causing it.

Btw did you mention about the places he travels to with work & the possibility of a parasitic infection/disease?

@TracyBeakerSoYeah thank you! Yes he included this in his brief to the doctor he saw in A&E today. Fingers are crossed they get a bit more data this weekend to point them in the right direction.

This is an easy one to rule out and given his international travel, should be high on the list .

https://www.merckmanuals.com/home/infections/parasitic-infections-trematodes-flukes/fluke-infections-of-the-liver#:~:text=At%20first%2C%20liver%20flukes%20may,likely%20to%20cause%20these%20symptoms.&text=)%2C%20itching%2C%20diarrhea%2C%20and%20weight%20loss.

Malaria, maybe?

Thanks @SeaToSki and @Inthetropics - so far they aren't working the exotic location angle very hard but have taken it on board.

He is still in hospital tonight but feeling completely better from the episode and - MIRACLES (thanks to you lot) saw a GI specialist this morning who agrees the gall bladder is a likely culprit and has ordered an MRI for early next week. The ultrasound this afternoon showed - obviously - some swelling in the liver, because it always does immediately after the attacks - and although they didn't find a stone it showed debris in the gall bladder. Based on the accounts people have kindly shared here, I'm not ruling out that the MRI will show a blockage in the duct.

Anyway - fingers are crossed, will keep updating, and thank you all - again - so so much! x

How are you getting on, @itsjustashotaway?

Just checking in ..has gallbladder been investigated?

Sounds exactly like my gallstones, pain like very bad indigestion, needing to burp, once I was sick the pain went away. I then started with itching, dark urine & pale poo & the pain ramped up with a raging temperature, I had pancreatitis. I had to be admitted to hospital for iv antibiotics & fluids. After two days, I was sent home with oral antibiotics & had my gallbladder removed three weeks later, it was completely empty & the consultant said he thought I had passed the stone as my bile duct was massively oversized.

Me too @itsjustashotaway wondering how things are?

Hi all!

Thanks so much for asking @CakeIsNotAvailable @TracyBeakerSoYeah and for the latest contributions...

Well, it's been a whirlwind. He saw the GP early Friday who said he'd go away and read the notes, consider an ultrasound (but reluctantly, believing the existing scans ought to have turned up a stone / blockage) and be in touch.

BUT, the episode that was underway the night before didn't - for the first time - clear up, and returned in force that lunch time. So I said, enough, A&E for you, long wait, triage, saw a doctor that night who said scream inside 'autoimmune hepatitis' (he asked if biliary colic was an option, they were emphatic it wasn't bile duct / gall bladder) and prepared to discharge him, but stopped to check with the GI team and then things started moving.

He was admitted that night, blood etc, ultrasound the day after showed the usual swollen liver as a side effect but by then his mentioning biliary colic to everyone who would listen had started to get some traction and the next doctor said let's MRI the gall bladder and see.

Lo, he has had a stone but it isn't there now, but his bile duct and gall bladder were full of sludge / debris including from an infection, so he was sent home on day five (Tuesday) with metronidazole and clotrimoxazole (sp?!) for five days, written up for blood at GP in two weeks (now one, really), and an appt with the surgical team two weeks on to discuss the gall bladder coming out.

We moved house on Friday so it was reaaaally well timed 😳but we are both over the moon to have a diagnosis and plan.

And BEYOND grateful to all you clever and kind people who told us where to tell them to look - honestly - I cannot thank you enough. Mumsnet is the solution to most things, it never fails to amaze me! I really am so grateful to everyone for putting their heads around it, and the excellent advice 🙌

Sound like gallstones to me.

Could also be G6PD deficiency which causes hemolysis. I am unlucky as a woman to have some symptoms of this (women normally don't, because the dodgy G6PD gene is cancelled out by the good one, on the other X chromosome). I have also had gallstones. The difference is that the gallstones produce a very sharp unpleasant pain; bilious colic is the old-fashioned term and seems the right way to describe it. But once they've passed I feel far better. Both lead to yellow skin and eyes. G6PD (which for me seems to be triggered only by eating large amounts of fava beans, also by some drugs) is a much more general feeling of malaise and weakness, which doesn't resolve quickly, but which isn't accompanied by acute pain.

Good news @itsjustashotaway ! It's always the bloody gallbladder 😂 when he gets his appt through for the surgery take the first slot they can give and get it gone. I feel so much better now mine is out, in the meantime he'll need to be careful about what he eats, anything fatty/greasy is likely to cause a flare up and pain.

I knew it sounded like a blockage OP, honestly mine was the smallest stone and caused the biggest issue. They thought I was in liver failure for a while. I had 6 years of issues before they finally took the time to sort my problems out properly. I hope your husband can get sorted soon.

Thanks @hopsalong !

@FatAgainItsLettuceTime that is exactly where we're at; I think the antibiotics have the infection on the run but he's set off by even the smallest crumble of feta cheese now. It needs to come out. There's an appt in clinic 27/06 but he's working so trying to bring it forward. Sooner the better I think!

@questgp six years is AWFUL, I'm so sorry for you - we are pretty fed up at three. Very glad you're on the other side now!

Ask for a choose & book referral to your nearest private hospital, I had my op done 8 weeks from my first attack & paid for by the NHS.