I have liver problems and they suspected anti-mitochondrial dna, but it came back normal. I have severe fatty liver that turns into cirrhosis usually in my family and we die young because of it. It is related to diabetes, in my case, which is an autoimmune disease. Autoimmune hepatitis is genetic I believe in some cases and is something that goes along with the various autoimmune diseases. Many people go undiagnosed, thinking the symptoms of fatigue are due to illness and elevated liver enzymes due to medication, and the symptoms are not so severe. And many people live to ripe old ages with really bad livers, not even knowing they had a problem.
Primary biliary cirrhosis, as you probably read, is scarring of the bile ducts. Its important to remember that the liver has a tremendous capacity for healing. There is also a difference between fibrosis, which is scarring that may heal, and cirrhosis. Liver disease tends to drag on for many many many years, slowly progressing in many cases and reversing in some. Did they say whether they think you have autoimmune hepatitis? Here is an article about PBC that is complicated but gives you a lot of info:
It seems PBC causes a lot of the markers for lupus to be abnormal, so it might be hard for them to tell without a scope of your bile ducts or something. Have they said anything about a biopsy of the liver or an ultrasound? These things will help them out to find out what is going on. There is treatment for PBC and autoimmune hepatitis and you might, with treatment, go through long periods of doing better. There are also surgical things they can do if there are lesions or other things contributing to the problem. Liver disease is usually slowly progressing and often the symptoms are not so bad or can be alleviated with medication.
I'm so sorry this is happening to you. I can only tell you that I understand and sympathise with how scared you are right now. I would wait to worry too much until they do more testing to see if there is a lesion that can be removed or other things that can be done first. You should talk with your hepatologist about your medicines too, and make sure that you have a good hepatologist, not just a gi doctor. You need a hepatologist, a doctor that specializes in livers. Borland-Groover is a research and medical clinic in Florida that specializes only in livers and some gi stuff. I see a hepatologist there. Because of your other problems and difficulties with diagnosis and your general health situation, you need to see someone really good at a good medical center that can coordinate with your rheumatologist and the hepatologist.
There is a great hepatitis forum here and many people there have PBC and can tell you all about it and what can be done. Try not to worry until they do more tests and find out exactly what is going on. Hopefully, it may not be as bad as they think now. Bloodwork can be taken many different ways depending on what the doctor is looking for.
I will pray for you and I'm glad you have mom and dad there to support you. It is scary, it sounds serious, but there is also a chance that the bloodwork is misinterpreted and they can't say for sure until they do biopsies or at least an ultrasound. Antimitochondial dna can be a sign of other things, and the markers for PBC are some of the ones they look at for lupus. You can see that in the article. And high liver enzymes can be signs of muscle damage, polymyositis or medicine problems or simple benign in some cases. I just don't want you to worry yourself too much until all the data is in. Also, there is a list of symptoms that indicate PBC. The only way they can really know is with a biopsy of the liver and scope of the bile ducts, and ultrasound and mri and stuff can help. Until this is done, its really just a guess.
Please let us know what they want to do next. I've had several biopsies of the liver, so I know something about that. And I understand the shock of finding out you have liver disease all the sudden. I hope that you don't have this problem on top of everything else. Please let us know. Sending good wishes and peaceful relaxing thoughts your way.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments