Elevated bilirubin for years but norma... - British Liver Trust

British Liver Trust

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Elevated bilirubin for years but normal LFTs besides that.

Amethyst91 profile image
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I’ve asked my drs for years to check on my liver as since I was a drinker I was always concerned about it. I never had any elevation in my liver enzymes that they told me about for 5 years now. I’m having horrible upper right quadrant pain for 6 months that continues to get worse to the point I feel like I’ve been hit by a truck every day I get up. It also consumes my whole right side of the body starting at my neck, shoulder and down to my groin and thigh. I’ve had horrible itching all over for about two years now. In May I had an ultrasound that said mild fatty liver, followed by a CT that said enlarged liver due to Riedel’s lobe but no mass seen. I in no way am wishing to have cirrhosis or worse liver disease but my body is screaming at me that something is wrong but my tests always come back ok. I finally got a fibrosure blood test saying my score was F0 since it was only 0.14 and the A0 since that was only at .05. My drs don’t want to investigate further but my pain is only getting worse. I know I had a history of drinking for years which I have stopped now but I feel like I really did some damage. Looking through the years of bloodwork I noticed my bilirubin was always elevated, the highest being 2.5 and the lowest being .08. In my research I’ve read that bilirubin is a major key for liver disease yet my drs seem to only care about the AST or ALT which are never elevated. My platelets for years have been in the high 300s-400s and since May have been on a steady decline and now at 296 which they have never been that low in my history as well as my WBC being in the low 4s and RBC low 3s which they have also never been in my history. No dr cares to help and only want to give me pain meds which I refuse because if this is liver disease then pain meds are just as bad as alcohol from what I understand. I’ve completely changed my diet for the better almost following a liver cirrhosis diet and I have never felt worse in my entire life. I’m currently dealing with horrible right shoulder and collar bone pain that makes me want to cry. Does anyone else have experience with this type of pain or a difficult liver diagnosis?

I’m not on here to be annoying and I’m so sorry if I offend or bother anyone by my posts but I truly have never experienced that pains that I’m having now and in 6 months I’ve had no signs of improvement, only things getting worse so I feel desperate for help.

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Hi,

We are sorry to read how worried you are. You are not bothering anyone, you are welcome here.

Have you seen a liver specialist to properly review your scans, bloods and symptoms?

If you are in the UK, you could give our nurse led helpline a call. 0800 652 7330 Monday to Friday 10am to 3pm

Best wishes.

Amethyst91 profile image
Amethyst91 in reply to

Sadly I’m not in the UK, and yes I’ve seen the same Gastro my mom saw and I even tried to get a second opinion from another one. I honestly feel like when it comes to my visits they don’t listen to me probably and just keep talking until my time is up before I get a chance to get into details. I really wanted a fibroscan but they only gave me the fibrosure blood test which I get is fairly accurate but since my blood already doesn’t show anything I’m not convinced that this fibrosure will tell the whole story either. Only imaging has found my enlarged liver and they have explanation as to why it’s large. I’ve gone on almost as strict a diet as a cirrhosis patient but nothing gets better. They keep saying it’s anxiety and I can understand that because obviously I am anxious but I can guarantee that is not the cause of my pain. Idk if it’s normal with an enlarged liver, Riedel’s lobe, or cirrhosis, but I feel a constant swelling pain in my right side where the liver is as if it’s trying to push out if my rib cage and no dr has anything to say when I tell them that other than throw a new pain med at me that don’t want. I feel very hopeless in all this.

in reply to Amethyst91

Unfortunately we are limited with what we can suggest as our health system (NHS) is very different to the US.

We hope that you are able to access a consultant who can review your notes and tests. Keep us posted.

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