I have been on the pbc yes/no rollercoaster for a week or two now. Today I got some results but have to wait another 10 days to see the GP to interpret them! I just want to be put out of my misery and know, one way or another. If I have it, put me on meds and let me get on with living. The not knowing is excruciating.
I tested very high AMA and had 2 years of wonky LFTs, currently ALT 60, ALP 183, GGT 71 which led to google, panic and a fibroscan.
Fibroscan results came back all within normal ranges so no scarring, fatty liver or damage. The note from the consultant to my GP says “if IgM titres elevated” then PBC. I have looked back through the bloods and only IgG was tested and was negative.
So does this mean I am going to be waiting for more blood tests before a conclusive answer?
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Your liver specialist has to review your results and your medical history to diagnose you. Sometimes, they need a biopsy but that is less common these days for diagnosis.
The diagnosis of PBC is based on the presence of at least 2 of 3 key criteria including a persistently elevated serum alkaline phosphatase, the presence of serum AMA, and liver histology consistent with PBC.
Thank you for that. It’s the little dribs and drabs of information that’s torturing me - you think someone is going to give a definitive answer and then they just give you a little more information to stress over and then make you wait again!
I got over my initial shock in the first few hours after the GP told me to Google it, and am not really worried about the prospect anymore after reading the reassurance everyone gives on here and a the pbc foundation website. It is what it is and life goes on.
It’s the uncertainty. I am fairly laid back generally and roll with the punches as the saying goes but I do like to know the facts. I can deal with whatever comes but hate to sit with the sword of Damocles over my head waiting for it to fall. Just do it already!
I recognise that despite how chilled I am as a person, patience is not my strong point. I know that I have 2/3 markers - definite AMA and persistently raised ALP, although only 1.5xnormal over 2 years and on that basis I have accepted the idea. I just want to stamp it, take the required meds to manage the condition and think about something else.
I am venting my frustration with the floundering but am not really worried about the condition too much presently as it seems early stages and manageable, I just need to get on and manage it, like knowing there is work to do and not being able to settle until it’s done!
And I am telling my GP to get anyone else to go to the PBC Foundation and not google.
I empathize with your situation. I also had to wait to get a diagnosis despite having a biopsy done along with all the needed labs. The pathology doctor at the hospital where I did the biopsy was not able to definitively diagnose. So my liver doctor had the biopsy slides sent to one of the leading liver pathologists in the US for a 2nd opinion. That took time and eventually was diagnosed with pbc. Once the liver doctor got the 2nd opinion, he prescribed urso for me right away. The waiting game is excruciating!!!
Really not best practice for doctors to recommend to their patients to google. Not everything on the internet is reliable. And not every person is astute enough to know which sources are valid. This is why we have access to our doctors who should answer our questions!!!
My pcp or gp didn't know anything about pbc either. He referred me to a liver specialist who always makes time for me and answers my questions. I am so appreciative. He literally gets back to me either the same day or 2-3 days when I send him a message. One time I messaged him on a Saturday and he wrote me back within 2 hours! So I am much calmer these days.
Keep your chin up. In the mean time, make a list of all your questions and when or if you can, schedule an appointment with your specialist once you are diagnosed. Have the doctor explain everything to you. Also how often you need certain tests etc and what he/she looks at to monitor you, etc.
Not sure how the medical care works where you live. I am American.
Yours sounds like it was a worse wait for confirmation. I expect an answer next week as I had the IgM blood test today, so actually since PBC was first mentioned it’s not a long wait - just that it’s been 2 years mooching along wondering what was going on and all the scans and tests without answers.
Like being in an endless trailer without seeing the end of the movie!
It took over a year for the doc to give me a definitive diagnosis, yet I had, through Google, already figured out it was what I had. When I asked how he "knew" what it was, he told me the positive AMA, elevated ALP, and Gttp numbers. All of which were present at first test along with an unbearable itch which was destroying my life. I know they can't diagnose people whimsically, they have to be sure but the waiting is in fact horrible and one can go down many different paths on Google. You are correct not to be panicking but I get the frustration of it all. I wish you the best and hope you get your answers soon
That’s it exactly Sister! It’s been 2 years since I went to the GP with extreme tiredness which led down the rabbit hole of raised LFTs, ultrasounds, endoscopy, MRIs and the gallbladder removal which was probably unnecessary since it made no difference and appears it was the hiatus hernia causing the abdominal pain and the PBC for the bloods, fatigue and itchiness.
It never occurred to me that the incredibly itchy back of my neck, intermittent but for weeks, possibly wasn’t an allergy to shampoo and maybe the achy hips and fingers isn’t just age or the cold! I have always thought that everyone has these things going on and just isn’t saying anything so I have never brought it up at appointments.
Looking at things over some 15 years I would say that there seem to be a lot of different forms of PBC, overlaps, differences in symptoms and so on. My conclusions are:* Treat your body well with good food, a healthy weight and plenty of fresh air and exercise.
* Rather than a focus on test results (but not to be ignored) keep a close eye on those which are signals of your body health - Albumin, Bilirubin, indicators of actual liver damage, like from fibroscan. A lot is known about PBC but also a lot not known, and a lot of conditions with overlapping symptoms.
I would say this aspect is similar to arthritis, for which there are so many forms.
* Look at trends in results, not just one set; there are many reasons for getting sudden highs or lows.
Thank for that William. I am just going to go with the flow, and only have to wait a couple more days for a definitive answer hopefully. I am pretty sure it’s positive, just from researching, but not really worried at this point. It is what it is and since I know the AMA means an auto immune of some kind, there are worse ones it could be! Bright side right?
In the meantime I am throwing myself into researching what I can do to help myself and getting myself into a mindset of being more aware of what I putting into my body so I can work at achieving the best outcome for me. No regrets no matter how it progresses if I have done all I can to mitigate it.
Thank you to everyone who took the time to reach out while I was in limbo land. Having people to talk to has really helped with the yo-yo emotions during the wait. I should be starting urso next week when I see the consultant and am eerily calm about the whole diagnosis. The internet has a lot to answer for but I am so grateful to have been able to lean on this small community of experienced PBCers for guidance and support during the process. It helped enormously.
If your Alp is at 183 isn't that 1.5 x the upper limit of normal, isn't that enough for a diagnoses. I guess depending on the lab you use. If it is 121 like most that I've had. I think some labs do run higher though. And you don't have fatty liver or any other cormobid liver issues. I would think that would be a slam dunk. Please let us know how your igm test comes out.
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