How high were your LFTs when you were diagnosed and what stage were you in

Hello everyone, I was diagnosed this week and waiting on my biopsy to be scheduled. I'm in the US and they require that to diagnose stage and start treatment. As I wait on this, I was just trying to kill some time and get an idea of what I may be facing with stage. How high was your ALP when you were diagnosed? If you know, what was your stage upon diagnosis? Did you have higher bilirubin or low platelets and albumin? Thanks!

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  • Hello NotorDJP.

    I recently did state what certain LFTs of mine were at diagnosis and currently but I cannot find it on the questions/postings so here I go again....

    These LFTs were the last taken just prior to diagnose in Nov 2010. My ALP was 614 (normal range 30-130 on my print-out). The ALT was 176 (normal range 3-53). Bilirubin was normal at 18 (normal range 0-22), albumin at 41 (normal range 35-50. I had abnormal total protein at 86 (normal 64-81) and globulin at 45 (normal 18-36). I had 'a positively high titre' of the AMAs (no figure on the consultant's letter nor the one he sent to the GP as I got a copy of that too)and alongside abnormal LFTs and also GGT too (abnormal) and itching I was diagnosed with PBC. The consultant said on my return to see him 2mths later that I had 'probably had it a few years' on his referral to PBC.

    I have to note that the LFTs I had taken Aug 2010 were actually a bit of a variant to the ones taken Nov 2010. Some of them were much better as in they were less Nov 2010 than a few months prior. My ALT had dropped 14 and was a bit better as was the GGT (which I am unable to find for Nov 2010 at the moment - have that may sheets of paper with blood print-outs over the last few years!). So it is possible for the LFTs to fluctuate outside of taking urso (I started urso Dec 2010).

    Of course also, some of my full blood count (FBC) were slightly abnormal and a few still are but not much.

    I have to say I am not interested in the stages of PBC. If I had of been offered a biopsy I would have declined due to the fact the AMAs gave a diagnosis for me. It does seem the norm here in the UK to have the AMA blood test and if that is of any doubt patients are normally offered a biopsy then. I cannot state now whether I would or would not have had a biopsy had my AMAs been negative but I suspect I would have done to find out what was up with me.

    For me not knowing certain things feels better to me. I am confident that with repeat bloods and also scans at certain intervals PBC can be plotted just as well. I do think uptake of biopsies is one that is for the patient and doctor to come to a decision about. I I just see a biopsy in PBC as something that really cannot change anything but that is my way of thinking.

  • Your numbers don't determine the stage, that's why they do the biopsy. It shows the tissue and how much if any damage is done. Take a deep breath, it is what it is.

    love on your liver it will all work out

  • I had a liver biopsy 16 years ago which confirmed early stages of PBC, but my bloods were more deranged at that time than they are now. The itching has also improved. It seems to me that this disease affects everyone differently. My bilirubin usually hovers around the 40 mark but has been up in the 60's even higher when I was pregnant. My consultant told me that the blood results and a person's symptoms don't always correspond to the stdges of PBC that your in.

    Good luck.

  • Thanks everyone. Part of me wants the biopsy part of me doesnt. But i know i will wonder what if if i dont have it. Kind of scared if the procedure

  • I'm also waiting on my biopsy, my lft was normal just an ANA positive. But I have so many other symptoms on the list. they said that you can not always tell with LFT's so not to get hung up on it. Biopsy is the only true thing. Don't want it but at least i'll know something for defo. x

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