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Liver issues - bilirubin - thoughts?

25 replies

Lookingforadvice123 · 13/11/2013 19:27

Evening all,

My OH had blood test results earlier this week (which was originally to test for a rash that he's had for several weeks, which tends to come and go with no obvious pattern) - the results showed "slightly raised levels of bilirubin".

My OH is 30, not overweight and doesn't drink much really, maybe once a week on average but sometimes goes weeks without drinking at all. He was overweight a few years ago but has been a healthy weight for almost 4 years. He smoked for about 8 years but again has been a non-smoker, for nearly 2 years now (so proud!). He has no other symptoms (other than the rash) - no jaundice, pain, tiredness or discoloured wee.

The doctor examined him at the appointment, feeling his liver and gallbladder, and said both felt fine, ie not tender or swollen. She said as he is fit and well, and has no other symptoms (she said the rash could be anything??) she thinks it's Gilbert's Syndrome, which is naturally raised levels of bilirubin but is harmless. However OH is still having another blood test next week, to specifically look for liver problems.

In a nutshell, I'm shitting myself! I never imagined there would be an issue with his liver, as I tended to think that only big drinkers or very overweight people had liver problems. My OH isn't worried as he's going by what the doc has said but I'm terrified there's something serious wrong with him! I'm cheekily looking for reassurance - has anyone else ever had raised levels of bilirubin? Or know of a liver disease which can affect young people who don't drink/overweight? Going out of my mind :(

Massive apologies for the essay and thanks in advance to anyone who reads it.

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superram · 13/11/2013 19:29

My husband has Gilbert's syndrome. He is fine. Levels go up if we have been a bit boozy but more affected by diet. He have up stinking for a year and levels didn't drop.

He is still alive!

He is healthy and fit and it hadn't affected life insurance and the like. Don't worry.

Matildathecat · 13/11/2013 19:58

SIL had the rash and abnormal bloods. It was cholecystitis, inflammation of the gall bladder. She had it out eventually because it kept making her poorly.

Lookingforadvice123 · 13/11/2013 20:05

Thank you both for replying. I've just looked up cholecystitus but it looks like it's specific to an inflammation of the gallbladder, which the doctor said was fine so hopefully rules that out!

Superram can I ask how your husband was diagnosed? I will be so relieved if it is Gilbert's Syndrome, as I've done so much research on it I know it's harmless.

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Fireytiger · 13/11/2013 20:12

My husband had liver problems caused by having ulcerative colitis when he was 18. Apparently it then causes a rare disease called PSC (shortened for something which is too long and complicated to remember!) which resulted in the need for a transplant. However a common side effect is for extreme itching usually on the legs and this happened to my husband for a year before diagnosis.

It sounds like your husband will be ok as he doesn't have this side effect. Best of luck, keep hopeful.

Lookingforadvice123 · 14/11/2013 10:29

Sorry to hear your husband Fireytiger, I hope he's on the mend after his transplant? I've looked into PSC and after having a mini panic attack convincing myself that my OH has it, it looks to me as if it would cause inflammation/blockage of the bile ducts from the gallbladder, is that correct? Did your husband have this when he was diagnosed? The doctor felt my OH's gallbladder and said they could rule out problems with that as it wasn't swollen or tender.

Do you think it would've been if he had PSC?

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NK346f2849X127d8bca260 · 14/11/2013 11:43

My dh and 2 of my sons all have Gilbert's syndrome, they are all fine.

Although youngest son (12) can get quite a yellow tinge/ tired from time to time.

Lookingforadvice123 · 14/11/2013 12:01

Thanks that's reassuring. Can I ask how you and your family were diagnosed?

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Lookingforadvice123 · 14/11/2013 12:03

Sorry meant to say your DH not you.

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NK346f2849X127d8bca260 · 14/11/2013 12:46

My dh when he had blood tests when we moved GP practice.

Eldest son diagnosed with blood tests done for Coeliac disease.

Youngest delevoped severe jaundice when 12 hours old, it was picked up then.

slug · 14/11/2013 13:13

As a teenager/young adult (a very long time ago now) I had wildly fluctuating periods, probably PCOS, but the student health service consistently sent me for blood tests. These always came back with slightly raised levels of bilirubin. My eyes will also occasionally go a bit yellow. In the end the doctors just shrugged their shoulders, said it's probably something genetic, that I overproduce bilirubin (I now suspect Gilbert's syndrome) and told me to ignore it.

I can honestly say that, apart from freaking people out with my intermittent yellow eyes, it's never affected my life.

secretscwirrels · 14/11/2013 16:44

I believe diagnosis for GS is usually made on the basis of excluding other causes of raised bilrubin. I was told I had it 15 years ago. Never had any symptoms.

Lookingforadvice123 · 14/11/2013 17:19

Yes that's the doctor's reason for having my OH have another blood test next week specifically to look for liver disease. I'm guessing if the tests are negative then they will diagnose Gilbert's Syndrome. Good to hear people actually do have it! Never heard of it before, surprising how common it is??

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justmuddlingalongsomehow · 14/11/2013 22:31

Could be gallstones - only detectable by ultrasound. Try not to panic - could be easily resolved!

Jellykat · 14/11/2013 23:07

My brother, niece, and DS1 (24) all have Gilberts .. I am waiting to see if DS2 has it, as he's 15 and it usually shows itself in the 2nd decade of life.
It is hereditary, and predominantly male orientated.
Everyones Bilirubin levels go up and down, with Gilberts it remains high, so repeated bloods with high levels give the diagnosis iyswim.

My DS1 did have real problems - periodical dizziness, blurred vision, numbness in arms, no energy etc, but has, through the years learnt to keep it under control by eating very regularly, and keeping alcohol to a minimum.. his hangovers last twice as long as anyone elses (he also goes extremely yellow) but i have to add, his is an extreme case as he is very very thin and has no reserves whatsoever.

Don't panic, it's easily managed even if a particularly bad case.. i don't know how you feel about 'alternative' medicines, but Milkthistle (tincture as opposed to tablets as more easily absorbed) is a very good tonic for the liver, my DS swears by it now.

Lookingforadvice123 · 15/11/2013 09:03

Thanks Jellykat that's very reassuring. OH has literally no other symptoms, other than slightly raised levels of bilirubin (the doc isn't worried about the rash so looks like that could be a coincidence? It does flare up after having a lot of semi-skimmed milk, and also whilst drinking, but it almost looks like a prickly heat rash).

I'm all for alternative therapies! I'm just keeping everything crossed that it is Gilbert's - don't think the blood tests on Mon are looking for gallstones as the doc ruled out a problem with the gallbladder on examination - so the tests are just looking for liver diseases.

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Lookingforadvice123 · 18/11/2013 09:25

Sorry it's me again...still freaking out! OH took his last antihistamine on Saturday, and the spotty rash on his arms has improved...but he's now started to itch again. We've now realised that it was itching alone he went to the doctors for originally, and the antihistamines eased this but seemed to bring out the rash.

Do you think as antihistamine eased the itching, that it must be an allergy? I can't help myself thinking the worst, that the itching must be a symptom of serious illness.

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Lookingforadvice123 · 16/12/2013 16:20

Sorry to drudge this up again! For those who read the thread - my OH's liver blood results were all fine, it seemed his bilirubin level had returned to normal, and everything else eg liver function was normal. He was still suffering with the itchy rash/hives, so went to the doctor again, who said he was sure it was allergy related, but could literally be anything, such as a particular colouring in food. He gave OH different antihistamines, and it's all been fine since then.

Until two weeks ago! OH got a stitch/pain in his right side during a run in the gym (which he does a few times a week) which didn't really go for almost two weeks. He said it wasn't really pain, just discomfort in his side, and it would come and go. It had pretty much gone by the end of last week, so we dismissed it as a muscular strain from the gym. However after a weekend of eating and drinking, it's come back and it's making him so miserable he's going to the doctor's again tomorrow :( and yet again I'm so worried. He feels fit and well other than this discomfort, in fact he ran 6k in less than half an hour at the gym today, but the pain returned a few hours later.

Any ideas on what it could be?

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Lookingforadvice123 · 16/12/2013 16:28

Sorry to drudge this up again! For those who read the thread - my OH's liver blood results were all fine, it seemed his bilirubin level had returned to normal, and everything else eg liver function was normal. He was still suffering with the itchy rash/hives, so went to the doctor again, who said he was sure it was allergy related, but could literally be anything, such as a particular colouring in food. He gave OH different antihistamines, and it's all been fine since then.

Until two weeks ago! OH got a stitch/pain in his right side during a run in the gym (which he does a few times a week) which didn't really go for almost two weeks. He said it wasn't really pain, just discomfort in his side, and it would come and go. It had pretty much gone by the end of last week, so we dismissed it as a muscular strain from the gym. However after a weekend of eating and drinking, it's come back and it's making him so miserable he's going to the doctor's again tomorrow :( and yet again I'm so worried. He feels fit and well other than this discomfort, in fact he ran 6k in less than half an hour at the gym today, but the pain returned a few hours later.

Any ideas on what it could be?

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Leverette · 17/12/2013 21:25

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PoshPenny · 17/12/2013 22:58

You may wish to google Dermatitis herpetiformis and also coeliac disease, see whether you think either of those could apply to your husband.

Lookingforadvice123 · 19/12/2013 10:15

Thanks both, I don't think it's any of those to be honest, although I suppose coeliac disease shouldn't be ruled out as he hasn't tried cutting out wheat!

He says the pain is literally ON his rib, like it feels a bit bruised. It's only when sitting down too, he's fine standing and can lie on his right side in bed fine. It did go away when he had a break from the gym for a week (he goes to the gym a lot to do running/various weights) and it started the day after he'd gone out drinking, had a 3 course meal plus Burger King on the way home (!), then RAN home back from town which is a stupid move in itself.

Do you think it could be muscular? I'm trying not to worry as I do suffer with general anxiety anyway, and logically I don't think it should be serious? He's had general blood tests, then when one showed raised bilirubin (which turned out to be minimal) he had more specific liver function tests and everything was normal, and his bilirubin had returned to normal. He reported the pain to the doctor since so he's had two different docs examine his torso and neither found anything. The only answer one gave was that it could be gallbladder, but the pain seems to be way too mild and sporadic for a gallbladder attack.

Aibu to worry? I hope I am! I know I'm getting on OH's nerves bless him, he's very patient but can see it's wearing thin.

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Musicaltheatremum · 19/12/2013 22:48

Do fatty foods affect him? Could it be his gallbladder? The bruised feeling sounds like inflammation of the muscles around the ribs so. Nothing serious.

Lookingforadvice123 · 20/12/2013 16:22

Thanks for replying musicaltheatremum. I thought it could be possibly fatty foods as the pain had gone away for days then came back after he had a Gregg's...but I think the pain is way too mild and infrequent? I think (and hope!) you're right about the muscular thing. It did start when he was running and went away after a few days off the gym. I also think it could be related to posture? His posture is appalling (think it's genetic his poor dad literally has a hunch at the top of his back) and it helped when he sat up straight. We walked quite a bit today and the pain is worse which surely means it's muscular? And his back is now hurting from sitting up straight (that's literally how bad his posture is usually!).

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Tester12 · 22/05/2019 10:48

Hi just wondering what came of this? Relative with similar symptoms? Thanks

Lookingforadvice123 · 22/05/2019 11:48

Hi Tester12, absolutely nothing! My husband is as healthy as anything. I think he went back and his levels were back to normal. He has actually lost some weight since this post - not loads as he was never big, but 1.5 stones ish. And we eat pretty healthily as a family, so I have no concerns about his health now.

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