I was diagnosed almost.a year ago after I gave birth to my daughter. My alk phos was around 348. I started urso last July. I have no scarring. My numbers came down to 151. However. I went to the doctor and it went up to 187. I'm worried and frankly I always been stressed since being diagnosed. I had been under stress more lately because I'm working a extra job like once a week besides my fulltime. I also been arguing with my husband more because he is getting tired of me being miserable with this issue. I also have been experiencing some hair loss so that increased my stress. I think it's related to the urso. Idk what to think...could the stress have cause my numbers to go up. I been doing all the right things like losing weight and watching my diet. I lost around 15 pounds. I'm only 33 and I'm afraid. I have a 2 yr old daughter. My hepatologist wants offered to start ocalvia or repeat.blood work in a month. I chose to repeat blood work and see. Thanks. I'm still have a hard time adjusting and I'm depressed my numbers went up. Thanks again!
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Th1712
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Stress can make any autoimmune situation worse. This is what my hepatologist told me when I was first diagnosed. So he told me to leave the worrying to him. Now I tell all my doctors, I can’t stress so I need you to take care of me really well.
It becomes overwhelming to worry about things one can’t control. BTW, stress can cause hair loss too.
If you feel like your doctor is doing a good job, let him/her take care of you & don’t stress. If not, find a doctor who has your trust.
Alk Phos can fluctuate. 187 over 151 is not a huge jump. More important to check for liver fibroses with the wave ultrasound. If you have no fibroses, it's a good thing. Stress can contribute to hair loss and all sorts of other things. You should try to worry less and think about PBC less.
PBC is a chronic condition, but, very slow developing. There are people on this site that have been diagnosed 30+ years ago and still doing fine. Focus on positive things in your life and be active. Eat well and enjoy your family. Don't think about PBC so much. Don't make it a center of your life.
Have you joined the PBC foundation. That was my first port of call 10 years ago when I felt like sick to the stomach every time I thought about PBC. I thought it was the end for me and honestly I’ve not looked back. Have a word with there advisors they can answer all of your worries about PBC in general. That will relieve some, if not all your stress about the disease. You do need to speak to someone, so you can understand PBC better. Don’t let the stress and worry ruin your life, stress brings with it a host of other problems you don’t need.
Fluctuations in Blood numbers for ALP do happen , so try to stay calm it’s possible your next one will have dropped back. ALP of 187 in my local lab would still be under the radar of my doctors, mine have fluctuated all the time over the years, but were still considered stable.
Take care, enjoy life to the full, it’s to precious to waste on stress and regret.
I was diagnosed after the birth of my son, who is 17 this year. I have no symptoms, my blood results are fine however, they did spike last year and we have no idea why. They have been fine for the past 3 or 4 blood tests. Could the hair loss be related to the birth of your daughter?
Please try not to worry, the only time I even think me having PBC is when I take my Urso before I go to bed, apart from that its hardly ever on my mind.
Hi, Your a young PBCer just like myself, I was diagnosed in March this year, i have a 3 year old daughter so i totally understand how you feel, This this a great group to join as there are many positive stories and everyone is so supportive here too.
I feel down about the diagnosis at times too but i tell myself let's not get upset about something i cant control and i try not to let PBC consume my daily life.
It's good that you have found the site as there is a lot of support and help on here … often from people in similar situations, like 'Lonely PBC' and Debbie, above, or iagra or ninjagirl. Also, what Candy12 says about joining the 'PBC foundation' is spot on. They helped me loads, when I was scared and had no one to turn to (I'd been given a false diagnosis). So why not email them, or phone the advisors? They are great! So supportive, knowledgeable and caring. Also if you join the 'PBC F' (It's free) there is so much information on the site, and helpful advice. I found that we feel more in control, the more we understand the condition … as well as talking to others who have it, who can be supportive and who know what you are going through.
If other PBCers, on here, can help and advise - as well as the 'PBC F' advisors - then, you will probably find that your stress and worry will decrease, and a lot of the side issues that it is creating, will subside. As others have said, the hair loss etc is probably post-baby related, and will stop soon. Plus, it sounds like your hepatologist is quite good, so try telling him about all your worries. Also, could you ask your husband to go with you next time? It might help him to understand where all the worry will come from. But meanwhile, remember we are all, always here. So just write in, or 'private message' someone who seems to be on your wavelength.
Take care of yourself, and try not to worry, but meanwhile try to cheer yourself up by doing things you love: sing, or play with your baby, see a good friend, dance around the house to your favourite music, or watch a favourite comedy film. Stress is the worst, so do all you can to de-stress and do things that make you happy.
Good Morning ....I want to welcome you to this amazing place to share our experience, strength and hopes with each other. There are many of us here who have had similar experiences. The good news is that you are not alone.
Let me also say that getting this or any diagnosis is down right scary! Feel you feelings so you don't end up stuffing them and manifesting something else. Being recently diagnosed and so young, you have a lifetime of things to learn and try.
As others say...YES stress will cause more problems. I don't know about you, but arguing with my hubby is one of the worse stressors for me. You both have lots of responsibilities and challenges...new baby, excessive work and now PBC is thrown into the mix.
If there is one thing I know about most men, it's this. They feel frightened and helpless when they cannot fix a situation. He is probably worried about you and your future together. I truly believe that we women have girlfriends so we can talk about these things. Maybe a little counseling would be appropriate for the two of you to learn some extra coping skills.
Now...hair loss. Not something any woman is excited about. Lots of different issue can trigger it...thyroid issues, lack of certain nutrients, STRESS, Could you be pre menopausal or have a female hormone imbalance? Perhaps it's time for a full physical with extensive labs to see what is going on. Most people here are on URSO and may have posted about hair loss. Just put that subject in the search bar. I do not take URSO, so have no personal experience.
About the LFT's that were a little increased. So many factors will cause a slight fluctuation in levels. Keeping a spread sheet of results is helpful, especially when going to talk to new doctors. My specialists are most concerned with bilirubin and fibrosis. Heck, my numbers are sky high, but bilirubin and liver scans are normal...go figure.
Lastly, think about maybe journaling and meditation. Even just going outside alone for 5 minutes and breathing can help rearrange your day. I always start my day with a gratitude list...changes perspective and gives me hope to be ok for just one more day. Be well
I was 40 when I was diagnosed, but likely had it for years before. I too was very concerned about being around for my young boys. I have a very strong faith in God and it helps to know that my future is in His control. Nevertheless, I have moments when my test results aren’t ideal. I want to throw myself a pity party, but pick myself back up and focus on the blessings I do have. I try to eat clean and enjoy one day at a time, not worrying about the next.
My hep wants to see my Alk Phos below 200. She says that the disease will not progress and the liver can heal below this level. It is very common for #’s to bounce around.
My understanding is that as long as the damage is mild, it can heal. For example, if your numbers go up for a few months, there is no need for alarm, as any damage that occurs will be reversed when your numbers drop back down. I doctor with one of the best hospitals in the USA, so I believe her advice to be sound.
Unfortunately, my Alk P has been climbing the past few months. I'm currently ~250. If it doesn't go down within the next few months, I'll be adding Ocaliva. I was diagnosed two years ago with AIH and PBC, so I'm also on Imuran and Prednisone. I'd really like to get to the point that I can go off some of the medicine, but for now I'm just thankful to have it.
I'm in stage 1, as confirmed with a biopsy 2 years ago and fibroscan this year. When I was first diagnosed, I rounded up all my medical records. I discovered I had a blood test with elevated LFTs 3 years prior during an emergency room visit that was never reported to me. So I know I've been living with disease for a while. What about you?
I had liver biopsy in March this year and it advised stage 3 , i have no Symptoms, so i was alittle surprised that it says stage 3, picked up PBC from routine blood tests.
I gathered my previous blood tests and it showed i had elevated LFT from four years ago but doctors didn’t pick it up , gave birth to my daughter 3 years ago and no doctors ever mentioned high LFT to me !!! ☹️
Symptoms do not correlate with pbc progression. While I was diagnosed 5 years ago, it probably onset 10+ years ago, my LFT’s cyclically fluctuated slightly high then back to normal. My old pcp thought it was a fatty liver plus lipitor. When I switched doctors, new one investigated & that was how I was diagnosed.
My Gastrologist said his confident my disease will not progress after blood tests went back to normal after taking URSO for just two months ... but i am not so sure regarding that , as i read from somewhere that LFT blood works returning to normal does not mean the PBC stops progressing.
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