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Anyone else had high bilirubin levels?

19 replies

YerTiz · 13/05/2016 22:54

I've been having some blood tests as I felt run down at the start of the year. Had to have a follow up blood test as my liver function came back 'out of range' (I posted about this at the time).

They've retested and done other bloods twice and my bilirubin levels are apparently high, so again I have to go and have another blood test this week.

Just wondering if anyone has any experience of this and what it turned out to be?

I haven't spoken to my doctor since March when I went for the first blood test. I have an appointment to speak to them on Tuesday but I'm winding myself up worrying about it.

OP posts:
clarella · 14/05/2016 08:07

I know a couple of people who have this and were told its Gilbert's syndrome. But one of those 'means not very much' diagnosis. (Though one person I know thinks it can be linked to fatigue)

On the plus side it's supposed to be very protective against cancer I think.

If they eat too much orange food they go very orange.

clarella · 14/05/2016 08:08

But I don't know how it relates to other things liver related. I hope you're ok, and wait till you can speak to GP before worrying too much easier said than done

winchester1 · 14/05/2016 08:10

My kids had it in their first blood tests as newborns, it was a bad case of jaundice, made them very tired but was easy enough to fix with sun lamps and mats for a week or so.

clarella · 14/05/2016 08:11

www.britishlivertrust.org.uk/liver-information/liver-conditions/gilberts-syndrome/

I've not seen this before but is what my friends / relations told me.

easterlywinds · 14/05/2016 08:12

i have high bilirubin levels aka Gilbert's syndrome. When I overdo things, my bilirubin levels get higher and I look slightly jaundiced but otherwise it does n't affect me in anyway.

Snowberry86 · 14/05/2016 08:14

I have a very raised bilirubin count at every blood test (meant to be below 20 and mine had been as high as 130). Doctors checked everything g else to be sure and said its Gilbert's Syndrome. Harmless but if I'm run down or fighting a virus it flares up and the whites of my eyes go very yellow. I also find I don't process alcohol well and dont get drunk but do feel very ill.

I'm pregnant and have been under the consultant who just wanted to keep an eye on the level throughout but had no concerns and it won't affect baby or delivery.

Duckstar · 14/05/2016 08:15

High bilirubin turned out to be glandular fever in my case. It can effect the liver, particularly in adults.

augustusglupe · 14/05/2016 08:52

I always have high Bilirubin. Not too high, it's usually between upper levels of normal and 130. All other Liver tests were completely normal and I was told its Gilberts syndrome. I had a scan too though just to confirm it, which was normal.
I was diagnosed with it 6 years ago after a spell of feeling run down.

YerTiz · 14/05/2016 08:52

Thanks for the messages this morning all! Appreciate hearing about your experiences Smile helps me feel calmer.

I don't feel particularly ill, just run down and weak, some days more than others.

Trying (and failing) to stay away from Google. Just wish I didn't have to wait until Tuesday to speak to the doctor and see what they think - I guess at least they don't think it's anything urgent?!

Will keep you posted.

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augustusglupe · 14/05/2016 08:58

Sorry, meant to say 30 not 130, it's never been that high!!
Like snowberry I can't tolerate much alcohol and if I have just a glass too much I am very ill.

ExtremelyConfidential · 14/05/2016 09:00

I also have Gilbert's. When I get very stressed, I'll also get a bit yellow.

OP what are your cholesterol levels like? Probably below the minimum normal level if you have Gilberts

YerTiz · 14/05/2016 09:02

That's interesting augustus, I don't drink much alcohol anymore but when I do I feel very dehydrated and just not right the day afterwards, even just a glass of wine or two.

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YerTiz · 14/05/2016 09:04

They haven't mentioned cholesterol levels Extremely but they did say they would test them (back in March when I went for my first general health fasting blood test). Will ask my doctor on Tuesday!

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ExtremelyConfidential · 14/05/2016 09:04

GS also tend to process paracetamol and anaesthesia differently from normal people. The hit is faster and so can give a toxic load temporarily as well as wearing off faster than standard times.

There is tendency for hereditary link, so if you have a baby they are at higher risk of neo natal jaundice.

PinkParsnips · 14/05/2016 09:06

My DH had high levels and he looked a little yellow. The GP didn't seem too concerned and it went away by itself.

YerTiz · 14/05/2016 09:14

Both my sons had jaundice as babies, but not a concerning level and it went away after a few days.

Also interesting about paracetamol as I tend to go for that as a more 'gentle' option over ibuprofen!

Will see what happens Tuesday. They want to check my bilirubin levels with another blood test too.

Full bloods (?) and hemoglobin (!) were satisfactory apparently. I've only spoken to the receptionist so not feeling very informed!

OP posts:
YerTiz · 14/05/2016 09:16

Ps/ DH says I don't look yellow (thanks love). But to me my eyes never seem bright and white.

OP posts:
YerTiz · 18/05/2016 10:51

So just a quick update: doctor has confirmed they think it's Gilbert's syndrome (phew). Can relax a bit now!

OP posts:
ExtremelyConfidential · 18/05/2016 13:57

Thanks for the update. Hope you're OK.

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