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

49 replies

itsjustashotaway · 01/06/2023 21:04

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

OP posts:
itsjustashotaway · 01/06/2023 21:05

PS - he is mid 30's and active.

OP posts:
greenacrylicpaint · 01/06/2023 21:09

does he take supplements?
there are some herbs that are liver toxic.
steroids?
have they looked at his gall bladder?

Summerishereagain · 01/06/2023 21:11

Gall stone stuck in bile duct.

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Tinytigertail · 01/06/2023 21:11

My DH has been in hospital with very similar symptoms. He was diagnosed with an infected gallbladder. Apparently, it's been infected for about 2yrs.

HippyChickMama · 01/06/2023 21:11

Has he been tested for haemochromatosis? www.nhs.uk/conditions/haemochromatosis/

Oldtiredfedup · 01/06/2023 21:12

Recurrent Acute Pancreatitis?

where was this ‘sludge’ - in the gall bladder?

Coronateachingagain · 01/06/2023 21:14

Summerishereagain · 01/06/2023 21:11

Gall stone stuck in bile duct.

This

Biscuitandacuppa · 01/06/2023 21:16

Another vote for his gall bladder. Sludge/stones blocking his bile duct and affecting his liver.

FarmersWife2019 · 01/06/2023 21:19

I was going to suggest intrahepatic cholestasis. I had this in pregnancy but there are many causes. Was diagnosed with acute cholecystitis and gallstones soon after too.

TracyBeakerSoYeah · 01/06/2023 21:19

Five things come to mind with what you've described
• Gall Bladder problems
• Coeliac Disease
• Tropical Parasites such as Liver Flukes
• Malaria
• Addisons Disease

Have you & your husband been anywhere tropical within the last 2 years?

Has he been tested for Coeliac Disease?

questgp · 01/06/2023 21:20

Summerishereagain · 01/06/2023 21:11

Gall stone stuck in bile duct.

Yes! I had this, had all symptoms you describe and this was the cause. As soon as they cleared the stone my symptoms went.

questgp · 01/06/2023 21:22

Oh and my blocking stone wasn't visible on ultrasound, I had to get an MRI to confirm it, 2mm across.

itsjustashotaway · 01/06/2023 21:24

Ahh thank you all, feel a bit hopeful about the number of concurrent opinions here.

@greenacrylicpaint no suppliements or steroids, he's pretty clean - no drugs, non smoker and very light drinker (three glasses of wine a week / two or three pints once a month - but not in the last six months). I don't believe they have looked at the gall bladder (yet) x

@Summerishereagain @Tinytigertail @Coronateachingagain I might be directing him / them towards the gall bladder, then... thank you x

@HippyChickMama no he definitely hasn't but that sounds plausible, thank you for sharing - will investigate this too x

@Oldtiredfedup yes also seems highly likely after a google, thank you - I had a pancreas vibe but I didn't really know what to search. My OP didn't bring anything up 😂😂 will pursue this. Cannot say where the sludge was, DH thought the consultant had lost a smidge of interest having established the liver is performing mostly fine so he wasn't clear. We haven't had the debrief in writing yet but that might help.

Going to ring for an on-the-day appt tomorrow, I feel like we can probably push this forward sooner than another month hence based on this.

I should never have gone on hiatus from MN, it really is the route to all hope. Thanks so so much again all x

OP posts:
Villagetoraiseachild · 01/06/2023 21:28

Hope you get an accurate diagnosis soon Op.
I hope its something simple.
If he has been anywhere tropical insist on samples being sent to The Hospital for Tropical Diseases.

RebeccaCloud9 · 01/06/2023 21:30

I came to say gallstones too! I've just had my gallbladder removed. When a stone gets stuck in the bile duct, symptoms are as you describe. The stuck stone can cause pancreatitis too - I got this, and it went down with just fluids after the stone passed.

CakeIsNotAvailable · 01/06/2023 21:33

I'm a GP and I'd want an ultrasound of his gall bladder, if he hasn't already had one!

itsjustashotaway · 01/06/2023 21:33

@Oldtiredfedup @FarmersWife2019 I don't think BRIC is as likely; he doesn't get the pruritis really at all any more, nor the floating poo, and the episodes last 24-36h now rather than a week or more. I will raise it all the same, though, thank you! Really sorry about the pregnancy misery @FarmersWife2019 - notwithstanding the awful time conceiving, my first was a cake walk and the second I had everything going. It can feel endless!
@TracyBeakerSoYeah @Villagetoraiseachild very interesting. He travels internationally with work with multiple trips to India, Gambia, Ghana, Chad etc in the last two years. He took his malarone but I wondered if there might be something exotic to look into. Will suggest he raises this with the GP and request the sample be shared. Thank you!
@questgp that's nuts - I realise all this time I've conflated gall stones with kidney stones, which I understood to be mainly (very painful, but) manageable especially for men - so that has made me think. Thank you!
@RebeccaCloud9 crikey - you poor thing. Really hope you make a swift recovery to better times! And thank you!

OP posts:
SummerCyclist98 · 01/06/2023 21:34

Another one who immediately thought gall bladder and gall stones but surely they would have thought of that? I had a MRI to confirm, but had symptoms similar

Oldtiredfedup · 01/06/2023 21:35

Yeah - if he’s traveled to tropical places in recent years that’s deffo something to consider.

Oldtiredfedup · 01/06/2023 21:37

Does the pain get better when he curls up and worse when he lies flat on his back? That’s a common think in pancreatitis attacks

itsjustashotaway · 01/06/2023 21:39

Thank you @CakeIsNotAvailable I hope his says the same thing but we will very much push in that direction now!

@SummerCyclist98 well that's just it, I was really baffled that the general view is now a bit head scratchy, there must be other things to investigate. We have switched GP recently and the first doctor he saw immediately retired but I am hopeful the rest of the team are a bit keener to get to the bottom of this, it feels like it's been a long haul now.

@Oldtiredfedup great question, he seems compelled to lie down as soon as it starts to flare and I don't think he's exaggerating how bad he feels but I don't know if it's just the exhaustion of it or the pain, I'll ask.

OP posts:
Loopyloo159 · 01/06/2023 21:42

I would be very surprised if he hasn’t had his gallbladder checked out !

GreyTS · 01/06/2023 21:45

Oh, now that you say that he travels to fairly exotic places, you might look into malaria, dengue fever, bilharzia (parasitic infection than can affect the liver) I've seen similar symptoms from all the above

Oldtiredfedup · 01/06/2023 21:47

Has he had any imaging on his liver at all? Because that’s really surprising if he hasn’t. And I’d be asking for it.