HSD with Primary Billiary Cirhosis

[MSJT]

Hi everyone, I was just wondering if anyone has Hypermobility Spectrum Disorder and has also been diagnosed with PBC? Thanks

[katiepaine5185]

I have HeDS and i’m waiting for results of a liver biopsy checking for PBC. My daughter also has HeDS and she and I have different phenotypes of Alpha 1 anti-trypsin deficiency.

[MSJT in reply to katiepaine5185]

I'm still waiting for a definite diagnosis. I had my liver biopsy just over a month ago and they saw bile duct loss. I have been put on medication (Urso tablets) for the last week until they know for sure. I am now waiting for an appointment for a CT scan. I hope your biopsy goes well. What was the cause for concern around PBC? Mine was elevated liver enzymes, specifically ALP.

[katiepaine5185 in reply to MSJT]

Thank you. I had mine at the beginning of the month, not something I’m in a hurry to repeat, the local anaesthetic lasted just long enough for the biopsy then stopped working thanks to the HeDS. I’ve had persistent raised LFT’s for years but the GP always marked it down to the Alpha 1, which I’m still hopeful is what’s causing it but I also had Xanthelasma appear under both eyes with normal cholesterol and upper right sided pain with no gallstones. My results only came back from the lab Monday so I’m not even sure I’ll know what if anything they found until the new year.

[MSJT in reply to katiepaine5185]

Yes I have the same where local anaesthetic doesn't work very well for me. My first liver biopsy I pretty much felt everything but my most recent one the doc was very good when I explained and he gave me a large dose and used two different anaesthetics. Maybe something to mention if you ever need to have another one.