New and Confused

[Chefess]

Good morning.

I have tests coming up that according to my hepatologist, will confirm what she is 95% sure of: PBC.

As background, I am 64 years old. I have had Hashimoto's Thyroiditis for 40 years, Crohn's for 12 years, on and off suffering from psoriasis. The Crohn's has been in remission for the past 4 years. Despite all of that, I have been in great health, I eat well, exercise 5-6 times a week, very active and my weight is very good. So needless to say, I have been quite shocked at the recent diagnosis.

Seven months ago when I was having my routine bloodwork, my LFT's came back high: ALP 214, AST/ALT just a bit above normal. At that time I felt like crap and assumed I was having a Crohn's flare. I lost 15 pounds in 2 months, mainly because every time I ate I had upper abdominal pains. My primary told me to stop my Crohn's meds (Lialda) and Lipitor. I immediately felt better. Bloodwork was done 6 months later and the ALP was 230, GGT 268, AST/ALT stable. In June I saw a new Gastro, who did a whole range of tests:

ALP 237, ALT 60, AST 46, ANA Positive, 1:160 Speckled, AMA Positive 1:640.

I am having a CT today to look at my small bowel as I have Crohn's of small and large intestine. A colonoscopy is schedule for two weeks.

In the meantime I was referred to a hepatologist, who is fairly confident that I have PBC due to the positive AMA, although she did say it is unusual to have PBC with Crohn's. She also said I could have autoimmune overlap. Ugh. I am having an MRI next week to look at the bile ducts and she says probably will follow with a liver biopsy. Once these tests are complete, my course of meds will be decided.

Of course following all of these I started researching and quickly freaked out. There is so much info out there, and much of it conflicting. I was happy to find this site and hope that it will be a great source of information and relief.

Thanks for listening. I will update soon.

[LindyRich]

Sorry about your situation. Welcome.

If you join the PBC FOUNDATION (based in the uk) you will have access to up to date, easy to understand information. (It is free and open to anyone no matter which country they live in) Some of the information on Google is outdated or inaccurate. Or even downright scary.

All your figures go over my head I'm afraid but I am sure someone else on here will comment on those.

Which country do you live in?

Regards

Lindy

[Chefess in reply to LindyRich]

Thank you for the response. I have joined the PBC Foundation, and have read lots of interesting info. I live in the U.S.

[ninjagirlwebb]

You are going to be okay. Just have the hepatologist & your primary care doctor figure it out for you. Write down your questions & ask the hepatologist.

I was freaked out by the biopsy. The thought of it spooked me. Fear of the unknown is actually worse than the actual procedure.

The doctor will put you on urso once you are diagnosed with pbc. Hope they rule out overlap.

Breathe & keep positive!!!

[gwillistexas]

Hi Chefess...your last labs & mine are identical except my AST/ALT were normal & my ALP was few points above yours. ANA titer same, speckled pattern, I’m 64 & in the US. Looks like your new Dr is on top of it all. Keep us posted🤗

[LorraineLouise]

You are going to do just fine. Sound like your Dr is on top of this. That’s the first step. The biopsy is an easy 5 minutes procedure. I never knew it happened. I was diagnosed two years ago and was put on Urso. I’m doing great. My labs will never be normal but are holding their own and for that I am very grateful!!!

I wish you the best!!!

Lorraine Louise

[Tacnap]

Lipitor made my legs achy and so weak, also my ast and alt were elevated. The doctor took me off Lipitor and within a few weeks all labs were back to normal. I expressed to him I did not want to be on any Statin drug and he told me to take 2 1,000 mg of fish oil per day. Weill do labs tomorrow to see what that has done for cholesterol.

[ninjagirlwebb in reply to Tacnap]

Let us know the results. I am curious if the fish oil will help. I take fish oil too, but it didn’t do anything for my cholesterol. I am on statins.