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Raised LFT’s and bilirubin
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Liverprobs · 29/06/2019 18:16

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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birdonawire1 · 29/06/2019 19:00

Have they checked for hepatitis A?

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Liverprobs · 29/06/2019 19:07

Yes, negative ... all hepatitis’s are negative ...

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StiltonVanDeKamp · 29/06/2019 19:10

Have they screened for hepatitis E? This has become more common in the UK in recent years. Also I would make sure they are checking for Cytomegalovirus as well as Epstein Barr as both can cause glandular fever but sometimes only the latter is checked.

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orangeshoebox · 29/06/2019 19:13

did she take drugs? alcohol?
paracetamol (horrendous for staggered overdose)?
gall stones?

probably all ruled out already.
I hope she feels better soon!

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Liverprobs · 29/06/2019 19:45

Checked for hep e but not sure if result is back. Ebv mildly positive, waiting for results of 2nd test to see antibodies. CMV negative.
She doesn’t take drugs, rarely drinks, no paracetamol, gallstones ruled out.

the pain, nausea, bloating and struggling to eat is awful. Why her bilirubin is increasing is mind boggling given that everything is coming back negative.

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orangeshoebox · 29/06/2019 20:04

any medications (including map, birth control pill)?
food supplements? (iron is known to cause issues if overdosed, some herbs)

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Liverprobs · 29/06/2019 20:07

Only medication is combined pill. This has been mentioned to every doctor and specialist she’s seen. She’s been on it for 3 years due to period problems.

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orangeshoebox · 29/06/2019 20:17

just trying to think of something that might have been missed.
I really hope a cause if found soon and that treatment makes her feel better soon.
it's awful seeing your child in pain and not being able to do much.

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Liverprobs · 29/06/2019 20:28

Thanks orange .... I’m happy for any suggestions!

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HIVpos · 30/06/2019 12:53

Hi OP, so sorry your daughter is going through this and it must be quite scary for you all.

You asked for any suggestions...presumably the hospital has already covered everything, but the only thing I’d add is re hepatitis and HIV, there is a window period whereby any infection might not show up on a test for a while. HIV won’t tend to show up for anything like 2 weeks up to 3 months after contraction (though a test at 1 month past any exposure is pretty conclusive). Hepatitis has varying window periods depending on which - easily googlable.

I do hope you get answers soon and they’ve given you any advice they can on best things for your DD to eat and drink that might help.

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justilou1 · 30/06/2019 13:07

Cytomegalovirus?

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Gingernaut · 30/06/2019 13:11

www.ncbi.nlm.nih.gov/pmc/articles/PMC5719197/

If nothing else is deranged and all other tests are coming back negative, Gilbert's Syndrome is worth a punt.

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QueenMabby · 30/06/2019 13:22

Cholestasis?? Does she have any itching? I had obstetric cholestasis when pg with dd and my bilirubin was v high. Blockage of the bile duct may explain digestive problems et. Has she had an abdominal ultrasound? Hope they get to the bottom of it soon. Poor dd.

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Liverprobs · 30/06/2019 14:42

She’s been poorly for 7 weeks, started going yellow 3 weeks ago when bloods were first done - so hiv and hepatitis were all done 4 weeks after first becoming poorly.

CMV negative.

Gilbert’s syndrome negative.

Cholestasis?? - off to google now to see as I haven’t heard of it. Yes she’s very itchy. No blocked bile duct - had 2 ultrasounds and mri.

Thanks again all

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justilou1 · 30/06/2019 14:50

Epstein-Barr Virus? What colour is her urine? Are her feet or ankles swollen? Have her stools been inspected? Has she had a fever? Is her spleen enlarged? (Haemolytic Anaemia) Could she have an autoimmune liver disorder such as Autoimmune Hepatitis or possibly primary biliary cholangitis?

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pollyannaperspective · 30/06/2019 17:08

There is also Primary Sclerosing Cholangitis. Met a now 20 year old who was first diagnosed 'in crisis' at 15.

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wagnbobble · 30/06/2019 18:33

Have the Drs suggested Gilbert's syndrome? The high bilirubin is the key sign and Drs will say that Gilbert's is pretty symptomless. However I'm on a Gilbert's Syndrome Facebook group which is international and so many talk of the symptoms your daughter has. It is possible she has a horrible virus which is flaring up her Gilberts, gall bladder etc ?? ( please note I'm not medical so please keep on at the Drs in case there is something else at play)

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millespadpuddy · 30/06/2019 22:36

It's a long shot but might be worth googling symptoms of Addison's disease so you can rule it out.My daughter was diagnosed with it recently & had a yellow complexion & darkened pigmentation
around her knees,knuckles,elbows etc.
No energy or appetite,high heart rate & very low blood pressure.Salt cravings.

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Liverprobs · 01/07/2019 08:54

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.

Sad

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justilou1 · 01/07/2019 11:15

The bloating and nausea are a worry, as are the pee. Have they done full blood counts and iron studies?

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Liverprobs · 01/07/2019 18:34

As far as I’m aware, all bloods done and fine.
Urine colour is that way due to very raised bilirubin.
Rang the 2 hospitals she’s been seen at and neither are answering ...

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millespadpuddy · 01/07/2019 23:20

It's an awful situation to be in,such a worry.I hope you get answers soon.x

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Liverprobs · 04/07/2019 09:53

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 Hmm

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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millespadpuddy · 04/07/2019 22:16

I understand how you're feeling.Sometimes I feel that you have to be ten steps ahead of the doctors!!Hope thing improve soon.x

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snapple21 · 04/07/2019 22:49

Can you go private?

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