Does everyone have to have a liver biopsy e... - PBC Foundation
Does everyone have to have a liver biopsy even if their liver function tests are o.k.?
Well I had a biopsy because my liver function tests were NOT ok - not sure if that helps you but it's my understanding that they wouldn't do one if the liver function test was ok but perhaps it depends on other factors too..
Thanks nanan I had a soul destroying appointment with the gastros registrar on Monday.
When I had an ultra sound in Dec 2012 I was told that they saw 20 small gall stones. The rheumatologist said we will have to refer you to Gastro. for that as it will be to do with your PBC. Waited all this time for appointment. Did she ask about my illnesses which are M.E. PBC, Sjogrens and now everything points to me having sarcoidosis NO She asked me did I still care for my special needs daughter, did I find it stressful and would I like some antidepressants!! I have cared for my daughter for 48 years and it is my way of life. Why she started off by discussing her I really can't understand. She also said that I had not had a scan of the liver. Maybe the fact the computor wouldnt work and she could not get the pictures of the scans up could answer that !! She told me my liver function test was o.k. so I said that I did not want a biopsy.
This appointment has really disturbed me as I came away feeling that my caring for my daughter was something they did not approve of.
Clearly not the best bedside manner by asking inappropriate questions. I wouldn't give antidepressants unless the patient stated that he or she was depressed and only after doing the standard screening. The decision to have a liver biopsy is yours alone. If it helps, see my next post several ones down.
Bob
My LFTs were slightly elevated when the biopsy was ordered but returned to normal by the time I received my results (after four consucutive lab tests showing drops each time). My doctor ordered the test because of positve AMA and super elevated IGM. Results showed AIH (although bloodwork didn't point this direction) and a probable overlap of PBC.
I had a biopsy but my LFT test was through the roof!
a biopsy was suggested for me, but I refused. I have only a few symptoms and did not want to do anything invasive. I am in the us and typically they do biopsy, but I don't see the need as yet.
Thanks for replying dinnyd. I am glad it is not just me who said no!
I was referred to a gastroenterologist by a rheumatologist without my knowledge, that was until I got the appointment through the post that is. The rheumatologist had sought advice from gastro department following the results of blood tests and they asked for me to be transferred to them. On my very first appointment with gastro the registrar told me the blood tests showed I had PBC and I needed to have a liver biopsy to confirm the PBC and check on the extent of the damage. I did not question the need for the biopsy as I thought that was what was required. It is only since finding this site that I have learned that not all Consultants/Specialist ask for a liver biopsy to be performed and it all seems to depend on the consultant and health board covering your area.
I had a positive AMA last summer after biliary colic-like symptoms with an elevated AST and ALT which returned to normal after a few weeks. I had a million dollar workup done that included an abdominal CT, which appeared normal other than a dilated biliary tract from a laparoscopic cholecystectomy to treat stones and biliary colic four years earlier. AP was never elevated and there were no autoimmune symptoms (dry mouth, etc.). My GP was puzzled about the second bout of colic symptoms and suggested I see a gastroenterologist. I am also a (male) medical doctor in the States and I never saw a reason for a biopsy, especially since PBC is so rare in men; I like to be conservative and first do no harm. Without the elevated AP, other autoimmune symptoms or a family history of PBC I didn't think that an invasive procedure was needed. I just have liver function tests done yearly with the standard physical exam. If AP starts to elevate above normal I will get a biopsy done and put myself on ursodiol.
I am not a gastroenterologist and I would not give clinical advice as such. I also know that as doctors we shouldn't treat ourselves but these are just my own thoughts.
Bob
No biopsy for me so far, blood tests and an annual liver ultra sound scan seem to be ok at the mo......
Lou
Thank you for all your replies. It can be a very lonely place to be when you suffer from this kind of illness when even half the Drs. do not understand them.
What does ALT and ASTmean? Also AP. How do you find out about all these things?
I am also being tested for sarcoidosis. Has anyone else got that?
Have you been in touch with the pbc foundation, they have a great folder
The info below is from patient.co.uk.....
Alanine transaminase (ALT). This is an enzyme that helps to process proteins. (An enzyme is a protein that helps to speed up chemical reactions. Various enzymes occur in the cells in the body.) Large amounts of ALT occur in liver cells. When the liver is injured or inflamed (as in hepatitis), the blood level of ALT usually rises.
Aspartate aminotransferase (AST). This is another enzyme usually found inside liver cells. When a blood test detects high levels of this enzyme in the blood it usually means the liver is injured in some way. However AST can also be released if heart or skeletal muscle is damaged. For this reason ALT is usually considered to be more specifically related to liver problems.
Alkaline phosphatase (ALP). This enzyme occurs mainly in liver cells next to bile ducts, and in bone. The blood level is raised in some types of liver and bone disease.
Albumin. This is the main protein made by the liver, and it circulates in the bloodstream. The ability to make albumin (and other proteins) is affected in some types of liver disorder. A low level of blood albumin occurs in some liver disorders.
Total protein. This measures albumin and all other proteins in blood.
Bilirubin. This chemical gives bile its yellow/green colour. A high level of bilirubin in your blood will make you jaundiced ('yellow'). Bilirubin is made from haemoglobin. Haemoglobin is a chemical in red blood cells that is released when the red blood cells break down. Liver cells take in bilirubin and attach sugar molecules to it. This is then called 'conjugated' bilirubin which is passed into the bile ducts.
It will get less frustrating, sorry cant help on other condition
Keep your chin up
Lou
Thank you. I let the lympth drainage nurse have my folder to study when I went to her for treatment. Unfortunately the treatment was rather expensive and it was quite a distance to get to the clinic which meant that I was exhausted the following day.
I must admit that I did benefit from the treatment. I did not realize just how much fluid I retained.
I will ask her for it back. Thanks for reminding me.
ALT and AST are two liver enzymes that are checked during routine blood tests. They are used as an indicator of liver cell (hepatocyte) health because a certain amount of them leaks into the bloodstream under normal, healthy conditions. When there is too much leakage it means that there is injury to your liver cells. An example of this would be hepatitis.
AP is alkaline phosphatase, an enzyme made by the cells (epithelial cells) that line the bile ducts (It is also made by other cells in the body, such as bone, especially in children who are growing). Like AST and ALT, a certain amount leaks into the bloodstream during normal health. In an adult person with too much AP leakage, it often means that these cells are injured. This is what happens when one has PBC and some other disorders because PBC is an autoimmune disease that injures or kills bile duct epithelial cells.
A diagnosis of PBC is made when at least (two) of these are found:
(1) A positive AMA (anti-mitochondrial antibody)
(2) AP elevated above normal (more than six months)
(3) A positive liver biopsy
You can find out about these on the internet by putting "liver enzymes", "liver function", "liver blood tests" etc. in any search engine. They should give the normal levels of these enzymes. Also it is not a bad idea to ask for a copy of your blood work from your doctor.
Bob
Thank you Bob. I will now be able to ask appropriate questions when I next go to the Drs. In fact I might book a double appointment so as he has time to explain things to me.
You said earlier that you were a Dr. Do you know anything about sarcoidosis? If so would it be easy to mix the two illnesses up.
There is a good reference on sarcoidosis on the website eMedicine (emedicine.medscape.com/arti.... It may be a bit too technical but it is free since you don't need a prescription to access it. I know that a classic finding of the disease is inflammation of the lymph nodes (hilar lymph nodes with non-caseating granulomas) around the lungs that must be differentiated from tuberculosis (caseating or cheesy consistency granulomas, which are layers of immune cells walling off TB bacilli). Many symptoms of sarcoidosis are similar to TB, such as low grade fever, anorexia (not wanting to eat), fatigue and coughing, to name a few. I am by no means an expert on the subject but a TB test would be warranted if you haven't already had one. By the way, doesn't your moniker mean the Isle of Man? My grandfather was a writer who moved there to escape the taxes in England.
Thanks again for your reply. I do have the cough at the moment and the tiredness. Just finished a week on penicillin but am still coughing. I know for a fact that I have no immunity to T.B but refused to have the vacination and my Dr.at the time agreed. I worked with special needs children so had to have the heath test every year. Have been retired 10 years now so no longer have it.
Yes I do live on the Isle of Man which means that I do not have the access to the larger specialist hospitals in U.K.
At the time I was diagnosed with PBC there were only 5 other people on the Island with it and 3 of them wished not to be made known. Amazingly one of the others was a woman I worked with at the special school.
Thanks again for your help and support
Jill
Hi
I've not had a biopsy either. I have annual blood tests but don't see my consultant anymore. If the bloods show sign of liver cancers I'll get seen again. Definitely seems to be down to consultant.
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