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primary biliary cirhosis
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primary biliary cirhosis

i am 40 yr. old female.....had one baby boy in 5/2009 and another baby boy in jan 2011.....had some liver function tests done due to being diagnosed with preeclampsia 10 days after delivery........all were high.....have since been re-tested and re-tested and re-tested.....lft's have fallen and then went back up......current are AST=50...ALT=63....AP=143....GGT=172........i have also tested positive for ANA and AMA and had a total thyroidectomy due to thyroiditis in March of 2011 (was discovered during tests that were run when i was in the hospital for preclampsia)............doc's are telling me i more than likey have primary biliary cirhosis............i do not have any symptoms....also had a ultrasound of pancreas, gallbladder and liver in April 0f 2011 which showed unremarkable results....i am now scheduled for a liver biopsy on the 20th of June (CT guided)....any advice or help would be appreciated.....i am scared and confused.........also do i get exposed to radiation from the liver biopsy? and does it hurt?....the doc office has not told me anything about it....the scheduling of the biopsy has been rather sudden.........
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Avatar_m_tn
Your reaction is quite normal. Everybody gets scared when faced with health issues.
I am a liver transplant recipient and I have had at least 7 and probably 8 liver biopsies.
Not all of mine were CT or ultrasound guided but guided biopsies are the best and safest approach.

I never had any anxiety medication but many people report that they were given a drug to help them relax. Some are given twilight anesthesia like Versed. I did have a topical  injection of an anesthetic drug to numb the skin but that was all I was given. I never had any significant discomfort during my biopsies and the ultrasound guided one was nothing at all. I don't believe that you will have a lot of pain during the procedure.

Some people do complain of some pain during the procedure but for the vast majority of people it is not a big deal. Probably the worst part for most is the anticipation and anxiety beforehand. The worst part for me is waiting for the results after the procedure.

I don't know much about the amount of radiation involved in CT but I doubt it is significant.
You will have to stay at the hospital for a few hours - 2 or 3 - after the procedure to insure there is no bleeding. You'll have to lie down for this waiting period and that can be rather boring.

Here is a link to a thread about biopsies so you can read what other people have to say about the experience.

http://www.medhelp.org/posts/Hepatitis-C/liver-biopsy/show/1325025

My best advice is to try and stay calm because, really, the procedure isn't a big deal. I always take it one day at a time with stuff like this. I have found it's much easier if you don't try and look too far down the road.

I wish you the very best.

Be well,
Mike
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Avatar_f_tn
Hi Jilal,
Hope you're doing well. How did your liver biopsy go? I also tested positive for only AMA antibodies, and my liver function tests and the ultrasound are normal, however I have Hashimoto's disease (hypothyroid). My hepatologist is running more tests to find out if I have PBC. Please let me know how you're feeling?

Sincerely,
Taline
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Avatar_f_tn
Hello Taline,
       My liver biopsy was fine.  I did not feel a thing (actually it was so painless, that I did not even know that the doc. had done the biopsy).  I am feeling fine.  I was originally tested for AMA and ANA because my LFT's were slightly high test after test after test (originally it was thought that was from just having a baby, so no one made a big deal out of it).  I also have, or I guess more correctly, had, Hasimoto's.  I had  a total thyroidectomy the end of March 2011 (which, did test positive for papillary cancer, but was so small the doc stated it did not spread anywhere else).  I am from the Erie,PA area, and I have gone to see one doctor here.  He gave me a diagnosis of PBC based on the biopsy results ( he stated I was Stage 1 with minimal bile duct damage) and prescribed Actigall for me to take 2x daily.  I asked him if I had this disease without any doubts.  He stated he made a diagnosis of PBC based on everything together(LFT tests, biopsy).  He stated the liver sometimes mimics other problems??? So I could not get a definite "You , without a doubt have PBC".....Anyways, I then went to see a doc. in Pittsburgh, PA.  He also made that diagnosis, but gave the same type of answer as the first doc.  He also added that I have a bit of a fatty liver and suggested I lose weight (igained about 50-60 lbs. when pregnant).  He also told me to take Actigall, but instead of 2X daily, I should take it 3X daily.  Instead of taking the medication then, I decided to test my LFT's a couple more times( between two doctors, I had several blood work orders).  I tested them twice in a 3 month period, and both times the LFT's had gone down to normal (high end of normal, but normal) with the exception of GGT.  My GGT both times was almost 3X higher than normal.  Anyways, I called both doc's., and they stated that with PBC your liver functions will constantly go up and go down.  Every time they go up, some damage is done to your liver, which will eventually lead to cirhosis.  The medication should keep the liver functions from going up and down, and just keep them at an even low level.  
I did just start the medication yesterday, but I made another appt. with a doc. at the Cleveland Clinic for a third opinion.  Let me know what is going on with you.
Sincerely,
Jill
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Avatar_f_tn
Hi Jill, how are you? Did you go to Cleveland to see the doctor? Hope you're doing well. I just saw a hepatologist at USC in LA and he told me that he was puzzled by my normal liver panel numbers and yet AMA positive. My liver ultrasound was normal as well, however there must be something slowly cooking. He asked for couple more tests. AMA M2 and Bile acids test and also GGT. We'll see how it goes. I am petrified and anxious most of the time, but I know that so many people with PBC can live a long life taking Ursodiol. I've been chatting with the PBCers organization members and they are so supportive. Check them out! Keep me posted sweetheart, and thank yo for replying to my post. You are in my prayers.


Taline
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Avatar_f_tn
Hi Taline....I cancelled my appointment in Cleveland because I started a new job and could not take the time off (Ihave since quit the job...so I am back to being unemployed with no Cleveland appt.), but I am in the process of making another appt. so we will see.  I have been taking ursodiol 3x per day.  Apparently i am supposed to be taking it for the rest of my life.  Hopefully, long life or until my lovely liver decides to go.  I am going to get bloodwork taken in another 2 weeks or so, so we will see what my liver enzymes are then.  Hope everything is going well for you.  You mentioned you were getting a bile acid test and a M2 test.  What are those?  I think I just had the basic liver panel tests and the biopsy.  Also, how do i get in touch with the PBCers?  It does help me to talk to people who have this diagnosis, but it's really hard to find anyone.  If you bring it up in public, people don't seem to have a clue as to what you are talking about.  Then, when they finally figure out what you are talking about they either look at you like you are already dead, or they become all judgemental and start quizzing you about your past and current alcohol usage.....so i have stopped telling anyone about it altogether.  Anyways, enough of that.  Hope you continue to do well, and please keep in touch!
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Avatar_f_tn
It's so good to hear from you. I hope all your upcoming tests will be in normal range, and will continue that way for the rest of your life. I've been meeting so many people on PBCers site and we chat on evenings on PBCers chat room (specific scheduled times). Please join us at http://pbcers.org/, and once you join, go to the support section, there is the chat room area, where you can check the schedule and we can meet there and exchange our emails...Also, join the PBC daily digest on the same site, where people post new research or experience of sort or any comments. It is my support system Jill, more than my loving family, because they all have PBC and understand us fully.


Have a great weekend my dear!

Taline
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