Weird liver problems - doctors don't know what it is

I've had loads of tests but they're still in the dark about what's wrong with my liver. LFT's a bit up and down, GGT is still 3x maximum but everything else is in the normal range (AFT was 1 point over but that's all). Hepatitis came back clear, negative for Wilson's Disease, Lymphoma, gall bladder disease; scan showed no abnormalities, and despite having elevated levels for several months now, still no sign of jaundice or worsening of my symptoms. I drink very little alcohol.

Been in contact with the hepatologist, who is also in the dark but wants to do a biopsy soon (although they've been saying that for ages now, with no information about when).

My doctor initially suspected Autoimmune Hepatitis but my blood results aren't right for that. However, my mother has a rare autoimmune disease which can run in families, and is horrendously difficult to diagnose, so I'm wondering if its that (its a kind of sarcoidosis, but doesn't affect the lungs).

At the moment, the mystery just seems to deepen, which isn't good. I'd rather know what I was dealing with.

12 Replies

  • I had problems since 1982 I am not a drinker and never have been, and live a reasonably healthy lifestyle.

    They eventually found out quite by accident that I had Gilberts Syndrome at the same time as diagnosing Parkinsons.

    I suppose eventually your doctors will come to some conclusion it only took mine 30 years so don't give up hope.

  • Presumably they've ruled out PBC (primary biliary cirrhosis)? I'm guessing they must have tested for anti-mitochondrial antibodies, which is one of the three diagnostic features of PBC as well as liver function tests being awry, and/or a biopsy. I'm at risk of PBC, but bury my head quite a bit, and don't know as much as I could about it, never mind other liver conditions. Don't lose heart, there is good support on these sites: and keep on at them, you deserve a diagnosis and good treatment.

    Remember to be good to yourself. All the best.

  • It's not looking likely, especially since this has been going on for 8 months now and I've no signs of jaundice.

  • You don't get jaundice with PBC until you've reached stage 4 (cirrhosis), and because it's a slow progressing disease, it can take years to reach that. If you're clear on AMA, you should be ok on the PBC front. I'm symptomatic but have normal LFTs and positive AMA.

  • Thanks. That's good to know.

  • My husband had a liver biopsy which showed Alpha 1-antitrypsin deficiency which in conjunction with alcohol is the cause of his cirrhosis. Apparently it can also be picked up on a simple blood test. Hope this helps.

  • Hi, I have been having a similar problem for the last year, Could it be the medication your on my doc says its possible some tablets can cause problems with the liver,?

  • That is a possibility, although the drug I've been on, gabapentin, isn't known to cause these problems. Gabapentin was originally an anti-epilepsy drug but is now used to treat chronic pain. It is more known for causing kidney problems and neurological problems, rather than liver problems though. However, my doctor came across a couple of case histories where gabapentin appeared to be the culprit. If it is gabapentin, it could take a year or so to recover.

  • I was on gabapentin and had to stop because of weight gain and effect on liver - read the leaflet of every medicine you areprescribed, it may shock you. If you could swap your meds it may help.

  • Interesting to learn. I have had a lot of weight gain as well, but I've managed to wean myself off gabapentin for now. My joints appear to have improved in the meantime - the pain is at least dealable.

  • Hi Anastasia

    Have you had an ultrasounsd?

    Have you been tested for Alpha 1 Antitrypsin deficiency

  • Yes to both

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