Raised LFT’s and bilirubin

[Liverprobs]

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.

Hi glitter ... thank you.

Latest bloods show bilirubin has dropped to 208 so great news! Liver doctor expects things to continue is this right direction but still take months. Her off days are to be expected as her bilirubin is still high. It makes sense - I think because it was exceptionally high, we see the drop as her getting better so we expect her symptoms to get better. Yet in reality her bilirubin is too high and causes these symptoms.

When her liver is back to normal the liver doctor is happy for her to try the pill again and she’ll be monitored from the start. To be honest, I’m not convinced it’s the pill at fault ... never have been.

Crikey I don't know whether I should have read this or not...WHAT a journey you have had! I hope this is the start if her recovery for good now.

I was hospitalised with VERY similar symptoms to your daughter two weeks ago, and been home a week. Eventually diagnosed with glandular fever, which I came on here to suggest although I realised this has been going on much much longer for her. I just wanted to confirm that when you listed these symptoms;

Obviously, extreme jaundice.
Severely itchy all over, including internal orifices.
Severe pain in tummy.
Nausea.
Extreme fatigue.
Dark red urine.
Pale stools.
Weight loss.
Appetite loss.
Bloated, hard tummy.

I had all of those bar pale stools (tmi alert, I was constipated in hospital!), so my experience and diagnosis would seem to match hers, if it's any help it really could be caused by Glandular fever. The itchiness including in places you really wished it wouldn't is awful. I had a migraine most days for the first 2 weeks and came up in delightful hives. I'm mostly symptomless now bar the fatigue and touch wood my LFTs are heading in the right direction.

I had just had a contraceptive implant taken out, though it doesn't seem related.

All the best for you and your daughter.

I am glad to read that things are heading in the right direction albeit slowly.

I'm glad that things are now going in the right direction. Hopefully DD will start feeling better soon.

@Liverprobs - what is the latest update?

I would love you to come back and say she's back to normal!

glitter .... she nearly is!!!

She’s so much better! Bilirubin this week is 82 - normal is below 12. Honestly, we’re so relieved I can’t tell you! We can’t believe she finally turned that corner! Once she went into liver failure we thought that was it. The human body is truly a remarkable thing!

She starts back at work next week, reduced hours, they’re being great with her.

Period finally stopped 4 days ago, been bleeding from 5 August!

Back at liver clinic in 2 weeks ... dd is already planning everything she can do now that she’s almost normal

@Liverprobs, I've been following your thread from the beginning, and I'm SO pleased to read your latest post!
You must be so relieved, not to mention your daughter, I do hope her recovery continues at pace!

Ah thank you nan ... honestly, every time I look at her I just grin and am so happy. We nearly lost her once when she was 9, this came close to a transplant ... I’m sure someone ‘up there’ is looking after her, and doing a GRAND job!

So so happy to read your update!

I've been lurking this thread since the beginning out of interest because I work on a Hepatology ward. SO happy to hear she is on the mend xx

Great news

Thanks merry lashes and fret ....

I'm so glad to read this @Liverprobs

I hope you will come back in a couple more weeks and say she's fine.

I keep checking in too! What fantastic news

This makes me very happy to read as well. I have also been checking quite regularly. Unmumsy hugs to you both.

Amazing news! I’m so very happy for your daughter (and you of course!)

Thanks everyone! Latest bilirubin is 43!

When it goes below 30 (next bloods in 4weeks so should be by then), she can go back on mini pill and other bits and pieces she’s had to wait for.

She’s back at work only 10 hours per week and even that is taking its toll on her. Her body will still take months to catch up and be back to normal.

Its just lovely to see her largely normal again!

UPDATE ...........

ALL blood results are now well within normal range!!

We’ve finally made it!!!
Honestly never thought we’d see this day!!!
THANK YOU to absolutely everyone for your help, advice, support and well wishes.

Wonderful news!! Hope she continues to do well.

Great news! Have watched this thread hopefully for some time. What a relief for you 😘

So Fabulous! You have been an inspiration. Watched this thread and it was so scary at times Didn't know what to say, but I do now! Congratulations!

Ah amazing news! So happy for your daughter (and you of course!) x

Fantastic news! You must all be so relieved!

Fantastic news! Lovely to hear xx

So pleased to hear that her liver is completely normal at last. Such a relief for you.
Can I ask what has your DD been advised regarding using oral contraceptives in the future?