Could we have caught it super early?

[Godsdaughter70]

Hi. I was diagnosed with NAFLD and PBC late January of this year by my GI. My blood tests came back with a positive AMA but my other LFT numbers are within the normal range or only slightly elevated. However, my LFTs have been slightly elevated on and off for many years now. My fibroscan showed plenty of fatty liver and little to no scarring; the biopsy showed no biliary duct damage, cirrhosis, or inflammation. My GI doctor is now saying I do not have PBC and has taken me off my URSO.

I have hypothyroidism with a sudden onset of it in 2014 after a serious bout of illness. (I had to have a colonoscopy where the initial thought was colitis but pathology came back negative.) October of last year I was hospitalized with an extreme case of pancolitis which is what caused me to see my GI again. She is the one that continued to run tests because of my extreme fatigue, my back itching/hiving, legs swelling, and the inability to lose weight.

Is it possible to have caught the PBC so early that there is no damage yet? Or could it just be something else? I've been told you don't get a positive AMA for no reason. I'm thinking I should keep taking the URSO. I've definitely noticed energy levels plummeting again. ☹️

I have a telehealth visit with an actual liver specialist in 2 weeks and am anxious to see what she says. (An in person visit wouldn't be until May and I didn't want to wait that long.)

Thanks in advance for your input! 🙏🏻

[ninjagirlwebb]

Yes, it is possible to be diagnosed with pbc early without other symptoms. I was diagnosed when my LFTs were fluctuating slightly high and sometimes normal. In fact, even when I did a biopsy the pathologist couldnt tell if it was pbc, only it was indicative of liver inflammation. So my liver specialist sent my biopsy slides for a 2nd opinion to one of the leading liver disease pathologists for a definitive diagnosis. You are doing the right thing to seek out an expert for a second opinion.

I suspect your energy levels have more to do with your thyroid than the liver issues.

Hope this helps.

[periwinkle88]

I agree with ninjagirlwebb. My biopsy initially came back without confirmation of PBC, just mild inflammation, so the GI said we'd just do labs on a regular basis to monitor for progression. My ALT and AST were high-normal or slightly high, and my alkaline phos was normal, but I did have a positive AMA. I decided to get a second opinion and took the biopsy images to a hepatologist a year later who sees a lot of PBC patients. He found a tiny spot near the edge of the biopsy images that was hallmark PBC. He had a second pathologist confirm it, and so I was diagnosed at stage 0. Good luck! It can be frustrating and you learn to advocate for yourself with this disease.

[rderezin]

Don't self medicate...listen to the liver specialist and come prepared with written questions so you don't forget to ask everything...Good luck

[OdinsMom]

It could be so early there is no damage or very limited to an area not tested. If your LFTs go back up I'd insist on going back on urso. As you can feel a difference now and I totally believe in listen to your body tell her you wań back on urso.

[Godsdaughter70]

Thanks everyone! I met with the hepatologist and she believes, like I do, that we just caught it very early. We are retesting my AMA with a more reliable lab (Quest) but she believes because it came back so high the first time it will be positive again, especially knowing my family history of autoimmunity issues and the problems I'm having already like extreme itching on my back, feet, and palms of my hands. (I check quite a few boxes on her list for predisposition of this condition. 😕)I showed her my LFTs in graph form since 2019 and she could see the steady climb in all of my numbers (AST only in normal range once out of last 4 times). She said we will test twice a year until the numbers get to a more clinically concerning level before putting me on URSO again as she feels I'm "subclinical" for now and doesn't believe the medicine would help yet.

For now, I'm following the Gerson Therapy method as closely as possible and already seeing great results. Food is definitely medicine!

Thanks again for your encouragement and advice! Be well!🙏🏻

[Kakey in reply to Godsdaughter70]

If you have diagnosed PBC you need Urso. You're saying your lfts are raised? I am sceptical of you doctor's option that they should be more raised for you to benefit from Urso,

Food is medicine, as far as your fatty liver goes, but not for PBC. It won't change it at all.