Hi everyone, I’m a newbie in need of some reassurance!
I have raised liver enzymes which has been raised for 3 years but remained stable so my GP wasn’t too worried. However, recently it raised quite a bit so he did a full liver screen and found I tested positive for a liver antibody (presumably AMA). My GP then spoke to a hepatologist for advice who both agreed that I may have PBC. I’m currently waiting for an appointment with the hepatologist but found out this week that the waiting list is 33 weeks but I’m not sure if I will be seen quicker as my case has already been discussed.
Anyway, my story behind the fear of being stage 4.
12 years ago, I tested positive for anti-mitochondrial antibodies (I assume that’s AMA) but after a referral to a rheumatologist, I was discharged because I eventually tested negative for the same antibody.
For years, I have had unexplained fatigue. I believe it’s been unexplained but doctors have put it down to my blood disorder (I have low platelets, B12 deficiency which I have injections every 12 months for, and now and again I’m anaemic and need iron). When my iron levels go back to normal after treatment, I never feel any different, hence believing my fatigue is unexplained. The same goes for when I have my 3-monthly dose of B12, nothing changes.
I was also diagnosed with postural hypotension 12 years ago and the dizziness on standing can get quite bad. I’ve read that dizziness on standing can be a symptom of PBC.
I recently went into hospital to have my appendix removed. I had a CT scan to confirm appendicitis and the scan report (which I somehow managed to get my hands on) showed my liver to be minimally enlarged. I questioned doctors about this, but was reassured it was nothing to worry about. I also had an ultrasound which showed my spleen to be enlarged (I can feel it under my rib). Doctors put this down to having a nasty infection with the appendicitis and I was advised to give it a few months to settle down.
The enlarged liver (although only minimally) and the enlarged spleen is what prompted me to head back to my GP. I told him I wasn’t happy with those scan results and want further tests. Because of the raised liver enzymes, the liver screen was requested which then showed positive liver antibody (I assume to be AMA as that was raised 12 years ago).
So, the reason I’m so worried about being stage 4 (even though PBC has not officially confirmed) is because I fear that the years of unexplained symptoms is down to that and the enlarged liver and spleen, both quite recent, are signs that my liver is quite damaged.
Am I worrying too much? I’m now starting to get paranoid and every little abdominal twinge I feel (I have IBS - unless that’s a misdiagnosis!) is now liver pain!
I’ve just turned 34 and am otherwise quite healthy. I’ve got 3 young kids and want to stay healthy. So all this uncertainty with the high likelihood I have PBC has made me completely anxious. ☹️ I’m even starting to wonder if I will see my kids become adults, meet my grandchildren (if I have any!) and will I be around long enough to enjoy retirement?
It’s good to read so many positive stories on here, but until I know exactly where I am, it’s difficult to be positive about myself when I feel it’s gone untreated for at least 12 years! Hope someone can make me feel a bit better (!)
Thanks in advance. xx