Liver Specialist in Seattle area?

[PacificNW]

I was diagnosed with stage 2 PBC April, 2019 and have been on Urso which is helping but recently by ALT levels were 192 and my doctor told me that was looking good. WHAT?? Does anyone have a good recommendation for a liver specialist in the Seattle are?

[Jlruggie]

Pacific NW,

Normal range for ALT is 3-30. Yours is 192? I believe that means live isn’t functioning normally. I believe it means you may experience liver damage if left untreated. Please pbc folks correct me if I’m wrong. That wasn’t professional for your doctor to tell you it’s looking good. How glib. My doctor said the same to me. I’ve gotten a specialist group through Penn Medicine, but I changed doctors when she wouldn’t renew my scripts for ursodoil or blood tests. I may change again because my doc gave a glib answer like yours did to abnormal blood test results.

Thanks for sharing Pacific Northwest, we are in this together!

Jlruggie

[genj65]

I have had readings much higher and my ALK right now is 312 so it's 3 times the normal and my University of Michigan doctor said I'm good as my liver has no scarring or sclerosis. I just suffer with the dreadful itching. I take URSO 300mg once daily. You should be fine and I pray you don't ever experience this itching that has been horrible for me as they've tried every drug and plasmapheresis (google it) didn't help me so I just take children's liquid benadryl to sleep at night and keep my scratcher with me at work and rub lotions to soothe ky skin. My last resort is to get on donars list for liver but as of now I told my doctor I I didn't want to yet 😏

Take care..

[iagra in reply to genj65]

The Urso dosage of 300 mg daily seems a bit low. Even if you are a very petite and slender woman, of 100 lb (apprx. 45 kg), your daily dosage should be between 575 mg and 675 mg. The dosage is calculated by using 13-15 mg/kg. I take 500 mg twice daily (I'm 125 lb). Are you on the low dosage because of itching?

[genj65 in reply to iagra]

Iagra I'm sorry I totaled meant 300mg x3 =900 is my dosage and I'm considered overweight for my height🙂🙃 My dr only lowered my dosage recently to see if it decreased my itching and yesterday I started a prescribed allergy pill calked fenofexdine 60mg only bc someone on blog mentioned it worked for their itching. I guess its the same as over the counter Allegra so my insurance wouldn't cover paynent so I spent $27 out of pocket. Oh I'm praying this works for me as my only option is to get on a liver donars list.

I wish there was confirmation that replacing my good liver with a donars would stop my itching!

Thank you for your reply..

[My3girlsPuyallup]

I live in Puyallup and also have PBC. I see a wonderful specialist at University of Washington. Her name is

Dr. Ann Larson. She is wonderful. She really takes her time and listens to what you have to say. Love her. Just google her name and she will pop right up.

[PacificNW in reply to My3girlsPuyallup]

Thank You!

[Katienharley]

What was your level prior to taking URSO? Seeing as you’ve only been on URSO for only a year - maybe from what it was prior to URSO and what it is now is looking good?

At my six month check after starting URSO my GP said if your levels are going down that’s good. No matter if it’s a small decrease (which mine was very small). I’ve been on URSO for 9 months now (going for another round of blood tests tomorrow - so nervous).

I see my specialist next week to go over my latest results. I find though that my GP is more in-tune with everything. The specialist isn’t really concerned as my levels are only 2x normal and I’m not considered a serious case.

[My3girlsPuyallup]

Your welcome

[PBCRobert Partner]

We cannot recommend anyone. However I can make you aware that Kris Kowdley has a clinic recently opened in Seattle. He has presented at many conferences on PBC.

[Hidden in reply to PBCRobert]

Will he be one of the speakers in October at the conference?

[PBCRobert Partner in reply to Hidden]

There are a number of conferences in October. I know we (The PBC Foundation) are hosting one. I also know there is one hosted in the US that month too.

[Hidden in reply to PBCRobert]

I’m referring to the PBC Foundation conference.

[PBCRobert Partner in reply to Hidden]

I honestly do not know yet. I know a couple of the names but not the entire guest list. The focus for that weekend is research as opposed to clinical practice.

It will be incredibly important that you all do your surveys on the App so we can use your experience to drive that research.

We will be doing a live webinar that weekend with some of the world’s top experts though.