What does this test result mean?

[andre79]

@nandixon actually my liver profiles has been always normal, including alkaline phosphatase. Now, what is "normal"? Right in the center of the range, sometimes a little bit higher than average, but never even close to the high end of the range. Never have been low. This was before onset.

After onset, my liver enzymes are a little bit higher, GGT is the one that is really high. Although I did notice that when taking milk thistle the GGT level goes back to normal, or close enough, and other enzymes get totally normal.

So, i guess I have no other option than continue with my milk thistle and wait to see what happens. Thanks for your input, I didn't even know that that conditione existed.

 

[Jonathan Edwards]

I agree with Oredogg's point about higher specificity for GGT for liver. I just wonder whether Alk Phos may have some advantage in terms of sensitivity in that a normal AP may be a more sensible way to establish that the liver is healthy. Traditionally GGT was only asked for if AP was high. It is conceivable that GGT 'false positives' are more common, although this is just a speculation by me. All I am really saying is that interpretation of tests is often quite complicated and the physician may be right to use AP as his guideline to normality.

That said, my instinct would be that if AMA is positive and GGT has been high then the disease process of PBC might be present in a 'prestructural' phase - but then the advice to repeat enzymes once or twice a year might well be the most sensible.

 

[andre79]

Thank you Dr Edwards, I will make sure of testing the liver regularly, I just felt relieved that my liver is not in such a bad shape as for now, and I am glad I could pick it up early to stop the damage.

 

[PhoenixBurger]

@Jonathan Edwards - I didn't realize you were a doctor. I apologize if my previous post was somewhat offensive. Many years of unpleasant experiences. Also reading that Reddit sub has really affected my view of physicians. I simply can't believe the extent of dislike an annoyance they have towards their clients/customers. (A.k.a. their patients). It was really quite unnerving to read their comments day after day.

No worries on the hijack. Information exchange is what this is all about. The more the merrier.

 

[Pyr2]

@PhoenixBurger
Interesting thread- curious phoenixb and I have a similar profile. I have some sort of unspecified autoimmunity and had a lumbar puncture which showed oligoclonal bands in my csf - yet I don't have MS. I understand that is indicative of immune/inflammatory issue in the central nervous system. I also came up as "fluorescence noted" by the lab on paraneoplastic panel YET negative by western blot. Why would I light up to cancer neuronal antibodies? I also have very low serum complements. By muscle and sural nerve biopsy, I was just diagnosed with a CIDP like axonal and demyelinating inflammatory neuropathy. I have a low (1:40) ANA so all rheumys dismiss me. And even my CIDP symptoms are not really classic.

I have had 5 brain MRIs, 2 lumbars, a SPECT (normal) and a PET/CT for cancer. No real remarkable history except a nasty case of infectious mono as a teen and anticardiolipin antibodies - and oh yes, I am STILL early antigen positive whenever they test me for EBV, which makes me suspicious of my reactive lyme tests as really being false positives. Nonetheless, I am doing a PICC line of antibiotics this month and just finished my first round of IVIG for the CIDP. Clearly Ive had and have viral exposure but both Lyme and EBV were underwhelming in my spinal fluid. The PET actually found old granuloma in my lung so we are doing a bronchoscopy to see if they contain sarcoid. Maybe thats the "smoking gun" in my case.

@JonathanEdwards- where do folks like like @PhoenixBurger and I belong? I am thankful for the NYU neurologist who diagnosed the CIDP and recognizned a neuroimmune syndrome, and fought the insurance company for the IVIG, yet not sure the IVIG being effective and where do we go next- Maybe remicade he said.... no idea why that would help. It really unnerves and scares me to have an autoimmune/inflammatory central nervous system disease with no name, no real game plan and degenerating symptoms...... I walk around all day long with a pressurized head, horrible facial pain, and crazy twitching, pins and needles, stabbing all over and major agitation/anxiety. Psych drugs totally fail me and provide no relief. I can't imagine my brain can withstand whats going on in there for much longer.

 

[TrixieStix]

@PhoenixBurger
Interesting thread- curious phoenixb and I have a similar profile. I have some sort of unspecified autoimmunity and had a lumbar puncture which showed oligoclonal bands in my csf - yet I don't have MS. I understand that is indicative of immune/inflammatory issue in the central nervous system. I also came up as "fluorescence noted" by the lab on paraneoplastic panel YET negative by western blot. Why would I light up to cancer neuronal antibodies? I also have very low serum complements. By muscle and sural nerve biopsy, I was just diagnosed with a CIDP like axonal and demyelinating inflammatory neuropathy. I have a low (1:40) ANA so all rheumys dismiss me. And even my CIDP symptoms are not really classic.

I have had 5 brain MRIs, 2 lumbars, a SPECT (normal) and a PET/CT for cancer. No real remarkable history except a nasty case of infectious mono as a teen and anticardiolipin antibodies - and oh yes, I am STILL early antigen positive whenever they test me for EBV, which makes me suspicious of my reactive lyme tests as really being false positives. Nonetheless, I am doing a PICC line of antibiotics this month and just finished my first round of IVIG for the CIDP. Clearly Ive had and have viral exposure but both Lyme and EBV were underwhelming in my spinal fluid. The PET actually found old granuloma in my lung so we are doing a bronchoscopy to see if they contain sarcoid. Maybe thats the "smoking gun" in my case.

I have just learned about CIDP and it symptoms sound a lot like what I've experienced. So much so that I am going to demand I be referred to a neurologist who is familiar with it. I am currently dx with ME/CFS but even my ME/CFS specialist thinks it may not be the right diagnosis as I have a lot of nerve symptoms/muscle weakness that ME/CFS doesn't explain. At first I thought perhaps it was MS, but MRI was negative. And like you I have a negative ANA so rheumys dismiss me as well. I do have an elevated rheumatoid factor, but they always ignore it.

I was especially peaked by your mention of you having low complements as it has just been discovered that my Complement C3 is very low (C4 lowest end of normal range). I am in process of trying to get to a specialist who understands complement and can figure out why the C3 is so low. I've been searching online to see if low complement is associated with CIDP, but haven't found too much. Did doctors think that your low complements were caused by CIDP?