Name changed as very outing.
Dd is 19 and become very poorly. Blood tests show very raised LFT’s - which are thankfully now dropping after 2 weeks. However, her bilirubin is increasing and is now over 200. Everything has been ruled out and hospital thinks it’s a virus, possibly glandular fever but not confirmed yet. She has severe pain behind her bellybutton which sometimes spreads to her lower back, she feel nauseous and struggles to eat because of this. When she does eat her symptoms get worse and her tummy gets bloated. She’s obviously very yellow due to the high bilirubin levels. Nothing takes away her pain and we’re all now really struggling as a family.
Any ideas what could be going on and what we can do to help the pain? ... gallstones, gallbladder, hepatitis viruses, hiv, pancreatitis, Gilbert’s syndrome all been ruled out.
TIA.
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General health
Raised LFT’s and bilirubin
Liverprobs · 29/06/2019 18:16
EBV mildly positive ... they’re waiting for second results to see if level has increased, in which case they can rule glandular fever in or out. Feet and ankles not swollen. Urine very dark rusty red. Stools very light. But these are all signs of raised bilirubin - which we know she has anyway.
Spleen - they’ve never said ....
Primary biliary cholangitis/cirrhosis ... they’ve said bile ducts all look fine on scan.
They’ve checked bloods for autoimmune deficiencies so I’m guessing not this either.
Gilbert’s syndrome definitely ruled out via blood test.
I don’t think Addison’s disease as her blood pressure has always been normal. She doesn’t have diarrhoea. Her weight is stable, always has been, She’s 7.5 stone, very slim.
She’s been very poorly since Thursday - abdominal pain more severe, much more jaundiced, more nauseous. She’s bloated all the time now ... she can physically see her tummy’s bloated but no one else would notice as she’s so slim. To me she still looks just as slim but I guess her tummy is usually flat but now it’s the tiniest bit round but still looks completely normal for her stature if that makes sense. She is itchy all over. There’s no painkillers that she can take .. nothings working.
She’s due back at the liver specialist in Wednesday for more blood tests.
I’m at a complete loss. I understand when they say it’s probably viral and will just take its course. But, how long can her bilirubin continue to increase?? We can’t come away on Wednesday without any further diagnosis or help. She needs the pain under control.
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Latest hospital appointment with liver doctor.
LFT’s are pretty much the same, bilirubin gone up to 220! No surprise to us due to how she’s been since last week.
He’s not too concerned as all tests coming back clear/negative. Only positive has been for EBV, but he couldn’t tell us how positive that was as he didn’t have access to levels recorded at previous hospital 
Pain and bloating in tummy is due to liver being enlarged and pressing on other organs and moving them out of their usual place.
He sent us away with different pain medication and more frequent medication for severe itchy ness.
We go back next week, if bilirubin is still the same or higher he will do a liver biopsy.
I feel like we’re being fobbed off ... I feel like I should have demanded more.
He then rang us 2 hours later to say he’s been thinking . dd should have an mri to rule out gallstones ... told him she had 1 last week at other hospital. He then checked computer, oh ok, good, I see it . you don’t need another one then, we’ll see you next week as planned. ... REALLY?
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