Frustration a 10!!

[labootz16]

Ok, people, I need some input. Just had some more blood work and my lfts came back at the highest level of " normal. My gastroenterologist thought I had PBC because of a high AMA and other symptoms. He previously did a biopsy in February of 2016 which was negative (AMA has tripled since) , and sent me to U of M to hepatologist. She said she doesn't think I have it, maybe something else. Definitely have fatty liver. Gastroenterologist is following up with lft check , but not my AMA. When I asked why, was told U of M results were negative on AMA in May of 2016 ,but ANA was postive don't need it checked. I have consistently been positive AMA seven times since not ANA. I am feeling worse all the time. See my GP on Tuesday and I am so frustrated I am crying much to much! Any suggestions, please?

[Paulio]

Wish I could understand what it is you are asking, but I don't. Sorry

[AyrshireK]

Your post is a little confusing - have you still to see the Hepatologist or have you been already?

If you haven't yet seen the hepatology doctor then they will be best placed to call together all your blood test, biopsy and scan results and come up with a plan of action as to what they think is going on. You definitely seem to be having an Auto-Immune response with all your positive antibody markers BUT none of us here are qualified to start speculating as to what is going on. Only the doctors with their expertese and your full records in front of them can do that.

Hope you get some answers soon.

Katie

[labootz16 in reply to AyrshireK]

I have seen the hepatologist - twice, but she did not do any tests this last March. Just looked at the old tests from May of 2016 and a biopsy from February 2016 and said she doesn't believe I have PBC, but I may have some other autoimmune disease, and come back in a year. Biggest change since previous testing, has been the AMA numbers have steadily increased in the last 18 months from 49 up to 75.2 and on the scale we have here , normal is under 20 so I definitely have something going on, but no answers yet thus my frustration.

[AyrshireK in reply to labootz16]

If your LFT's are in the normal range - albeit upper end of normal the doctors are probably adopting a watch and wait approach.

If your biopsy was showing no active auto-immune illness despite the antibody markers then you probably arn't sustaining any liver damage at the present time. If your condition was something like Auto-Immune Hepatitis then they begin treatment with high doses of steroids but this is only when your liver is actively under attack and inflammed (ALT numbers into the thousands are not uncommon). Steroids have some pretty nasty side effects so they hold off putting folks on them until they really need to. Once the active inflammation is under control they then often put AIH patient onto an immune supressants which again have there own drawbacks.

Whilst your figures are in the normal range I think you should see if you can tackle the fatty liver aspect of what's going on in your liver and see if you can reduce your liver numbers that way. The British Liver Trust have a page on Non-Alcohol Related Fatty Liver Disease (NAFLD) which includes measures you can take to tackle that. britishlivertrust.org.uk/li...

Easy for me to say but if you can also reduce your stress levels you will be doing your liver a favour too, auto-immune illnesses can get worse with stress and anxiety.

Katie

[labootz16 in reply to AyrshireK]

Thank you for your quick response. I try to stay calm, but lately I have felt so much worse with more itching, sweating, dizziness, sick to my stomach, pain in upper right ( front and back) that I just want some answers. I can't take any nsaids for pain because I have only one kidney and possible liver problems and on top of that my osteoarthritis is getting much worse in my hands and feet especially. Don't like taking meds anyway, but knowledge helps me cope and help my stress levels. Thanks again.

[Newengland01]

I have AIH and in the beginning I had positive and negative results for both AMA and ANA. Eventually, both stayed positive and I started treatment for AIH. The

[labootz16 in reply to Newengland01]

What symptoms did you have and were you Lfts high?

[Newengland01 in reply to labootz16]

When I first got sick my lfts were very high! I was very tired, slightly nauseous, and I had a pain on my right side that came and went and I really had no appetite. My AMA and ANA were positive then negative and just stayed positive.

[labootz16 in reply to Newengland01]

What are your lfts now and are you on Urso? Mine were high once and then dropped to high normal. The rest sounds iden- tical to you.

[Newengland01]

My lfts have been in normal range for 4 1/2 yrs. I started treatment with prednisone and then prednisone and azithroprine and eventually weaned off prednisone and just azithroprine since then. I don't have PBC and don't take Urso. I do have mild liver scarring from when I first got sick and was attacking my liver. But with treatment I have been in remission for 4 1/2yrs. I noticed you said, you went to UOM. You mean you University of Mass? And if so why didn't you go to Massachusetts General? They have special departments for every liver issue plus non-evasive testing and cutting edge treatment.

[Newengland01]

If I were you, I would get a 2nd opinion. When I first felt sick I went to a local hospital and was sent home but still didn't feel right. So I went to Thomas Jefferson University and they did there own tests because they don't go by other facilities tests and that's when they got to the bottom of why I was sick. They should I have done further tests on you.

[labootz16 in reply to Newengland01]

Did you ever get the itchiness?

[Newengland01 in reply to labootz16]

Yes! In the beginning between my shoulder blades would be itchy, my legs, my breasts. I would scratch so much little right dots would show up under my skin. But once my lfts and bilirubin started to go back to normal range the itching went away.

[Newengland01 in reply to Newengland01]

That's red dots not "right". Sorry

[labootz16]

I was referring to University of Michigan. I think they should do more tests too, but they aren't and I don't know where to go from here for a second opinion. I had another person here who goes to U of M for her PBC tell me that I should get a second opinion out of State since just about everyone in Michigan is affiliated with U of M. Thinking about Mayo! Thanks for your help!!

[Newengland01]

Your welcome.