Hi I habe PBC crossovered with AiH . I understand it’s not hereditary but can run in families . Nobody else in my family has this (that I know of ) should my siblings / children go and get their bloods done ?
I wasn’t diagnosed until i had stage 4 cirrhosis… as i had no symptoms , this was picked up from a separate blood test
thanks
Welcome to the Forum. Have you been in touch with pbcfoundation.org.uk yet? They can give you helpful information. You can also speak directly with them to get answers to your questions. I fully understand your anxiety re your family, particularly as you were diagnosed so late. Dependent on where you are, different guidelines recommend testing liver tests every couple of years. The statical chances are very slim, but it is possible.
However, right now it's more important to focus on you and make sure you get the support and care you need to make sure there is no further progression.
A simple liver function test that includes AST, ALT and ALP would give the basic info to know if their levels are in the normal range, and regular testing would show if there are any upwards trends. This is information most doctors test for in a standard checkup so they may be able to get a preliminary idea by just paying attention to those numbers to know whether further action might be necessary. If they are out of the normal range early intervention could be really important for their future health.
Also, although the medical world doesn’t recognize a “cause” for PBC and other autoimmune conditions, functional medicine practitioners believe that all these disorders result from toxic exposures, inflammatory foods, stress, and other factors that impact the microbiome and trigger immune responses. Taking action to eliminate as many of these unhealthy things as possible may prevent the disease from ever being triggered in someone who is genetically predisposed to it. So, to the extent you can influence your family members to adopt a healthier lifestyle.
my sister passed from liver failure. Never had a biopsy. My biopsy reveals Stage 3 Fibrosis PBC.
ah i’m so sorry to hear about your sister x hope you’re doing ok x
Thank you. Started ursodial 2 mos ago.
I see you posted you are Stsge 4, I pray you are doing ok
i’m doing really good thanks ! fatigue is my only issue . Just found out my b12 is low so hopefully once i’ve had my injections i’ll be great !
hope you’re ok x
It is certainly a concern understandably for your family. For any daughters I would suggest getting a baseline liver function testing around age 35 or so. I wish every 'well woman' visit would automatically include liver function tests. How many more might be helped by this simple test.
yep should be done regularly! save people like me getting diagnosed as stage 4 cirrhosis!
