PBC diagnosis

Digestive health
1

I have had mildly fluctulating liver enzyme for over five years. The ast and alt were only a few points high and I was told it was because I had fatty liver due to diabetes. Sometimes high sometimes normal… Then I changed PCP and found they went higher. ALT up to 300. Then I ended up in ER for a different reason and alt went to 500 and ast to 900. The ER doctor thought I had binged on alcohol for the weekend which I had not but he did not believe me. I went to my GI PA who also assumed I was drinking way to much. They did a full autoimmune panel and I tested positive on Antibody 2h. I had tested positive on that a year before and no one seemed to care. I have continued to have slightly elevated alt or ast with an elevated ALP. Sometimes the alt is high, sometimes the alt is high. There is no pattern Lately the ast and alt have been normal with an elevated alp. Ultrasound is normal (I’ve lost 50 ponds maybe that is why I don’t have a fatty liver), CT is normal. Oh yea, 5 years ago I started out with insane itching. But I have hypothyroidism and it was said due to that. I also have had fatigue since I was a child but it became much worse in the last 8 years. I have type 1 diabetes since 1994 . Im’ 63. They also told me Diabetes made me fatigued. Hypothyroidism fatigued. Fibromyalgia fatigued. I had shingles and I never felt I came out of the fatigue. They want a liver biopsy. Isn’t this enough, 3 blood profiles with elevated ALP. Bilirubin normal.

If the fatigue can be helped and perhaps the disease can be slowed I thin they should giveit to me to see how I respond. I do NOT want a liver biopsy. I am so disabled from other from disorders I’m not sure I care I care. . Of course if I end up needing a transpant Ill be screaming I don’t want to die. I just don’t know why they can’t prescribe the mediction and if the diagnosis is confirmed then my insurance will pay but if it isn’t then they won’t pay. But they haven’t tried yet. Are there side effects from it that make the success less favorable? I don’t want an unnecessary liver biopsy.

2

you need to see a hepatologist do you have pbc i didnt have a biopsy had fibroscan instead my hep diagnosed pbc based on bloods and fibroscan i take ursofalk my blood levels have come down

3

Well the gastroenterologist I see is a hepatologist. I have an appointment soon and I think he will insist I have the biopsy. I will make sure I have the fibroscan first. He says the biopsy will confirm the diagnosis. He does not trust the ultrasound because 8 years ago and 4 years ago the results said I had a mild fatty liver. The one this year said it was normal. I also had lost 50 pounds. I have alt and ast that are sometimes normal and sometimes high. Sometimes one is high and the other is normal and vice versa. The ALT is always a between borderline and the most was 600 once which dropped to almost normal in 24 hours. CT normal. I have type one diabetes, hypothyroidism, Reynauds, dry eye, mouth is so dry it smacks when I talk, severe itching. I would think that is enough. I am going to talk to him about doing a fibroscan but if he’s going to demand a biopsy anyway…I guess if the fibroscan is negative I will have the biopsy and hope it’s negative. However I have been told that a biopsy can have a false negative. My biggest complaint is a bone deep fatigue that makes me feel so bad that I can only go out and do something every other day. I have had fibromyalgia and this fatigue and muscle ache has been blamed on it and on hypothyroidism. But it changed in quality and severity when I had shingles about 8 years ago. I never got over the muscle pain and heavy fatigue. Went to dr. after dr and got the same answer…Diabetes and hypothyroidism.
How do I find a Hepatologist who has experience in PBC? I think mine had to go look it up in a medical textbook

4

its a worry if your hep had to look up pbc contact pbc foundation in scotland and they will assist you