I was diagnosed two years ago. I’m on 1000 mg of Urso daily. My alk phas has always run between 130 and 140. My dr was happy with those numbers. All of the sudden it has jumped up to 175. I always maintain a healthy diet and exercise along with yoga.
I was wondering if this has ever happened to anyone else and if so did they go back down?
Thank you for any input and wishing you all the best!!!
Hi,
I was diagnosed 2 years ago too. My Alk-phos started between 150-180... around there. Has fluctuated up and down. Sort of slowly on the increase too. Last labs it was 176 up from 153 or around there. I forget. But it went up over 20 points. I have labs again in a week or so. I'm not expecting good news. I was diagnosed 2 years ago but, clear back in 2008 I had surgery and my Alk-phos was 143 back then. Doctors never said a thing about it to me. After I was diagnosed I had my health records pulled and sure enough, I noticed my liver enzymes were up back then. Don't understand why they never told me. One doctor said he thought it was because I had gallstones. Another said he thought it was because I was overweight and had mild fatty liver. But no one ever told ME so I could have it checked out. 😫
Stella❤
I suspect I had the pbc way earlier than when I was diagnosed. My then primary care doctor always thought that the slightly elevated LFTs was fatty liver because I was overweight & it is common nowadays. I switch doctors & the new primary care doctor was a GI who pushed me for a biopsy. I had him monitor me for at least 2 years then he said I really need peace of mind, we need to get to the bottom of this & I want you to do a biopsy. So I had it for a while before I agreed to a biopsy. I thought my elevated LFTs were due to lipitor. I truly believed that at the time.
Wow! So many have the same story. Not being diagnosed for years. I also get so frustrated like when I went for labs and the phlebotomist just focused on the cirrhosis part of the diagnosis. He asked me if I had quit drinking. So many in the medical field no little to nothing of PBC. It’s really sad. I wish you a great rest of the weekend and thank you again.
It is a rare autoimmune condition so it is a longer road to diagnosis. Saving grace is that it progresses slow.
Reach out any time if you need any of us to chime in.
Stella
Thank you so much for your quick reply. I know I will sleep better tonight because of you. I’m sorry we have to deal with this at all. I had high levels too ,for years that were ignored. Then two years ago I had colon resection surgery due to diverticulitis. The surgeon saw my liver and after the surgery came out to talk to my family about the surgery. He then asked my family how much and long I have been drinking. My family had to ask if he was talking about the same person. I’m 61 years old and probably only had 10 to 12 drinks my entire life. Never cared for alcohol. This goes to show you how even we’ll respected Drs don’t know about PBC. For the most part I feel good. I tire easily but still manage to work and maintain a fairly busy life with friends and family. I am ever so grateful and hope it lasts. How do you feel mostly?
Hi,
I have RA too. So I have stiff joints and super dry eyes. I'm 59 but feel my 84 year old mother in law moves better than me. Lol
I'm ok. I tire easily but can enjoy most days. Some days I just lay around all day. Really. That's not me but is my new normal at least twice or more a week. 🙁
I gave my two beagles a bath today and managed to clean my kitchen so.... that's a good day. I have a meeting in the morning and a friends party to attend tomorrow night. I'm gonna be pushing myself but, I'm gonna go. Thanks for asking. PBC is sort of a roller coaster ride for me.... Up and down. All in all i'm ok. 😊 Just to clarify, my meeting in the morning is a religious one, not AA. I never drank either... The pharmacy people where i pick up my URSO and even some doctors have said things to me that make me wonder "Do they think I'm an alcoholic?" So, it's weird sometimes. PBC has been around for a while but many in the medical profession don't know much about it.
Stella❤
Stella,
You look so young and you are very pretty. I’m sorry you have other issues as well to deal with. I too have the dry eyes and sometimes the only way to get relics to close them. I have hypothyroidism. It seems we all have some other autoimmune issues. I am learning more and more to listen to my body and I know I have disappointed some by canceling plans from time to time. But it seems that working pretty much wears me out. I am alone and still have to work. We learn and support each other on here. For that I am very grateful! I will keep you in my thoughts and prayers!!!
Big 🤗 hugs,
Lorraine
Ditto girlfriend!! ❤❤
My doctor told me, we don’t ever freak out over one lab value, especially if it is only mildly elevated. He would probably tell you the same. You have to look at the trends.
In all likelihood, you will be back to normal next labs.
I understand where you are coming from though. It is very challenging not to worry or over think things. Sleep well.
Haley
Thank you so much Haley for your reply. I will sleep better tonight. I hope you are feeling well!!!
Same with me , same readings, i’ve had PBC since about 1990. I’m on 1050 urso , what are the readings of Alt , Ast and other liver levels
Thank you for responding. They are all within normal limits. So in that respect I’m still doing ok. Do you still feel well?
I’m ok , sometimes really tired but I can handle that , if yo dont mind where are you from
Arlie, I live in Chicago.
Thankfully, a drop in Alk Phos did happen to me at my last doctor's visit. In January 2018 it was 242 and it had never been that elevated so I was really scared. Now, it dropped to 209, so I'm relieved. My other liver enzymes, bilirubin, and albumin are all normal. I have been on 600mg/day of ursodiol ever since my diagnosis 13 years ago
Thank you so much. Thats reassuring . Also that’s it’s been 13 years for you. How do you feel?
I feel pretty good. I also have anemia from Celiac Disease but I'm taking iron so hopefully that will improve and my energy level will go up. I do notice being more fatigued since my diagnosis.
I’m glad you feel pretty good. I too for the most part do to. I tire easily and stress just puts me over the edge. So as hard as it is o try my best to not get stressed out. I literally get physically ill from it. Thank you for your re assurance. Big hug!!!
Right back at you! 
Cholesterol rising 
Feeling frustrated and despondent LFTs rising
GGT AND ALK PHOS INCREASING
Elevating alp/alk
Why would my Alk Phos go up after just starting urso?
