I went to the hospital for something which was not an issue but due to the blood tests i had my liver enzymes were high. I tested positive for AMA
I went for ultra sound and fibrosis scan and all clear
I don't have symptoms and feel great?? This was in 2015
I did not bother to go back for tests until today because i thought whats the point in stressing so will get to compare hopefully in a week the results from 2015 to now. Still feel normal. I do have reynauld since i was a teenager could that set off AMA?
They think i may have PBC? Any suggestions? I dont want biopsy think thats very risky since the fibrosis scan was perfect
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KN1981
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I didn’t have symptoms either & my primary care doctor moinitored my blood work for 2 years. My LFTs fluctuated normal, abnormal. He was concerned & then sent me to the hepatologist who knew I didn't want a biopsy. So he ran more in depth tests & promised me he won’t order a biopsy unless absolutely needed.
He talked to me for over an hour & convinced me to do a biopsy. I have pbc so he put me on urso right away. Told me it was hard to get people to take meds if they feel like nothing is wrong. I trust him & I take my meds.
In the early stages the fibroscan and ultrasound won’t show anything. Hopefully if managed well, it will never show anything!!! If you believe in your doctor, trust him/her to do what is in your best interests.
I was terrified of the biopsy too. But you have to do what is best. If you have pbc, it should be treated.
Because pbc is a slow progressing condition, it won’t show up if you are in early stages.
Not everyone needs a biopsy. You can be diagnosed based on lab work. When it is difficult to diagnose based on labs alone, then a biopsy.
Urso is not harmful to the liver. It is actually less harmful than the liver acids our own bodies make which is why we take it for pbc. Having it in our bodies decreases our own liver biles so it slows the build up in our livers to lessen any damage because our compromised liver bile ducts are slowly destroyed.
The liver bile ducts are microscopic in nature & you can only see this is under a microscope for damage which is why you won’t see it in a fibroscan or ultrasound in its early stages. The only way one can check this under a microscope is via liver samples from a biopsy.
You should consult with a hepatologist. They will be able to explain to you better. But everything I know I learned from my doctor & reading medical journals.
Thank you for being so patient and taking time to tell me. I’m really worried and in shock. Did you take the meds straight away or only when symptoms started? I have Also read that rheumatoid arthritis causes AMA positive so could it be that? Does that cause high liver enzymes?? Because I only found out by chance when giving blood I don’t know how long I have had high AMA and now worried
I will keep getting tested. Do you know a good hepatilogist you can recommend? I am in UK London but willing to travel
No worries. You want to take care of things sooner before it becomes an issue.
I have no symptoms. My routine blood work was off & that’s why we investigated this. I have been on urso since the pbc diagnosis.
I am in the US. Maybe someone in the UK can direct you to a good hepatologist. There is a whole bunch of stuff that can cause elevated LFT’s. That’s what a hepatologist can test for & rule out.
Don’t worry too much. Just make sure you follow up, get the right diagnosis & be treated for it.
Please try not to worry. The key thing is to make sure whether or not you have PBC by whatever diagnostic technique they feel appropriate. Then you can get on urso and help to protect your liver asap.
I am symptomless and couldn't believe my diagnosis - I also have had two normal fibroscans at 3.something over the last 4 years. I am in UK and they never said I needed biopsy. I think my bloods were enough to convince them - I even double checked with my consultant recently and said 'are you SURE I have it?' And she laughed at me and said of course!
I don't know where you live but you should definitely be in consultant hepatologist care. This is not something for your GP to manage - you should
be under a consultant for diagnosis and onward management. Good luck and try not to be too scared.
I was diagnosed with PBC in 2015 with abnormal liver test results and I was AMA M2 positive, no biospy. My ultrasound and fibroscan results were both in the normal range. I believe biopsies are not used in the UK as a diagnostic tool so there's no need to worry. Some people diagnosed with PBC do not have any symptoms whereas others have the terrible itch or fatigue but these do not correlate with the stage of the disease. If you are positive for PBC it's recommended to start medication as soon as possible as it will slow the progression of this awful disease.
I attend the Royal Free hospital in London. They have an amazing team of heptologists who are all very knowledgeable about PBC and will answer all your questions and put you at ease. They have been fantastic for me, my stress levels came down once everything was explained, it was still a shock though. I also, willingly, joined the research institute there and I've completed a few trials with them, anything to help with this rare disease. I would highly recommend this team.
I would advise you to join the PBC Foundation, link at the top if this page, they are a charity and do great work for awareness of PBC. They have a compendium full of up to date information on PBC which would help you. They also have a great, friendly, and knowledgeable team you can call if you need to talk to someone.
We are all on this journey together and it is very scary at first. Try not to stress or worry, easier said I know, but get a good team behind you, who will help and guide you, and most importantly just look after yourself.
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