Do I have Pbc?

4 years ago I got a routine colonoscopy, 2 weeks later I became very ill for 4 months..jaundice , SEVERE cholestatis..high LFT's , hairloss and extreme fatigue..I was tested for all diseases etc, then Dr's diagnosised me with Drug induced liver injury from the anesthesia used for colonoscopy...I have since recovered however my liver tests remain elevated..still have hairloss..they keep telling me might have PBC , I have had 2 liver biopisies and neither one can confirm this...I have been to so many Dr's have every kind of test no one can figure this out..I'm so frustrated..has anyone gone through this..?? Any thoughts?

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  • I would talk to the advisors at the PBC Foundation. They are the UK charity that hosts this site on 'Health Unlocked' and there is a link to their site at the top of this page. Once there, you can find an email address and phone numbers to contact their trained advisors, as well as having access to the information on the site about PBC. There is even more info if you join, which is free.

    You don't mention if you have been tested for AMAs (antimitochondrial antibodies), or say exactly which liver enzymes are raised. I believe different enzyme abnormalities can be linked to different liver conditions, also, most people with PBC test positive for AMAs (about 95%), however about 5% of people do have PBC without having AMAs.

    However, it would help to know these readings if you do talk to the PBC foundation people.

    You say you have seen lots of Drs, so I am assuming that you have seen a liver specialist (a hepatologist), but if not, you do need to see a liver person, and preferably one who knows all about PBC, as it is a rare condition and Gastros - and even some liver consultants - are not clear about the latest thoughts and developments in PBC.

    I hope this helps a little and that you soon receive some sound treatment.

  • Hello NycGirl.

    The liver function blood test can be elevated for allsorts of reasons as well as anything liver-related. We can have abnormalities with this blood test if we have a bone issue as can they show up not normal if we are taking certain medications.

    Usually from what I can understand a biopsy should give diagnosis of PBC due to cell changes that are throughout the liver.

    I was diagnosed with PBC that started with me itching and then my liver function test being shown to be elevated. I then went on to have an antibodies blood check that showed me to have a high titre of the anti-mitochondrial antibodies that along with the bloods and symptons can give diagnosis. I was diagnosed with PBC over 5yrs ago now. Never had a biopsy due to being diagnosed this way and being in the UK one isn't recommended then.

    There is another blood test that is done in PBC that apparently shows liver inflammation. I have it every time (well almost if it is remembered) and that is the GGT. I expect your doctor will have done one as it tends to be done with liver issues.

    Sorry I cannot say more as everyone is different and I'm no medic. Personally I'd seek to speak to another doctor who can read through all the information and then start ruling certain things out. I am sure we can have liver damage without any condition being present. If so a doctor would more than likely continue to monitor the bloods and at the same time advise on diet and lifestyle.

  • Thanks for your response I have been to several Drs, and all kinds of testing ..I just had my 2nd liver biopsy 2 weeks ago I was told it didn't give them much information, so my results are off to a pathology conference to be reviewed by a panel of specialist...but you mentioned bones , all the research I have done I never heard of anything bone related can cause elevated liver enzymes..however my bones hurt to the touch so I will look into that..thanks again

  • Hello again NycGirl.

    I only know that you can have abnormal liver function tests (or LFTs as they tend to be referred to on this site) with a bone-related problem is due to the fact that back in 2010 when the doctor was taking allsorts of blood tests at intervals to check for certain things, he said he was performing one that would indicate whether my higher than normal (and still climbing) LFTs were due to a problem surrounding my liver or bones.

    The last one I had at my doctor's surgery before going to the hospital to see a consultant was for Wilson's Disease which can also cause abnormal LFTs and this is due to copper overload in the system. I had a negative back on that as I did for all the hepatitis viruses and also coeliac was done (can't say if coeliacs give an abnormal LFT result but I had that one).

    If PBC can cause bone problems brought on by malabsorption of certain fat soluble vitamins then I expect it more than likely goes for any liver issues.

  • Have you seen a hepatologist if not demand to see one, i was also messed about like this and even diagnosed with Non Hodgkin's Lymphoma ( which i didn't have ) luckily or unluckily for me my biopsy showed severe PBC, My hair is now doing better as i have been taking biotin and using biotin shampoo and conditioner it's a B vitamin but ask your GP first. Or tell him like I did :o)

  • Hi There,

    Yes I have seen a hepatologist and everything was normal..this is very frustrating..thanks

  • Hi NycGirl! When I was first diagnosed , I had elevated liver function tests (LFT), including elevated bilirubin, GGT--- dr thot it was Gallbladder (GB), was sent to GI who had had Hepatology interest background ( not a hepatologist ). I had recently had severe ear infection & treated with 20 days levaquin--joints very sore,weird dreams-- could have been side effects of drug-- thot maybe drug- induced liver problems. This GI dr did extensive panel of tests checking several anti body categories i.e. ANA, AMA , ASMA, etc. At same time was seeing rheumatologist , who diagnosed psoriatic arthritis, I was having a flare up, not diagnosed before this time. Sometimes these disorders like PBC, inflammatory arthritis, etc, are 'triggered' or set off by a seemingly unrelated event. If Your LFTs still elevated--- get 2nd opinion from different Hepatologist , maybe see a rheumatologist too. Get copies of ALL your tests to take to various dr appointments, speeds things up & prevents duplication. hope you found out the exact name of anesthesia that you consider to be 'trigger' , maybe allergy testing might be indicated too. It's frustrating to go through--I sympathize. Good luck!

  • NycGirl, also have Dexa scan , checks bone calcium levels. Btw, some bone issues ,arthritis is one of them, do affect LFTs.

  • Have you had antimitochondrial antibody blood testt ?these are a sure sign of pbc.bad patches can occurr with pbc e.g when the body is under pressurefor instance pregnancy or viruses.i had glandular fever and that sent my system into overload and was really ill i kmproved a little but never regained my healyh before glandular.have you been to a specialised liver unit.

    Hope that helps.cazer.

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