New here w/Dx of Choledochal Cyst. Has anyone else been considered for this? It started with dialated CB duct n Pancreatic duct +AMA

[Lilespo-]

Hello All from S. calif. I’m confused with a diagnosis I’ve gotten from my Hepatologist. Some background info...positive AMA neg ANA. I had thyroid removed b/c of pos. Thyroid Antibodies, pos ANA, and toxic nodules so I can’t use thyroid function tests to help research my diagnosis.

My LFT have all been low side of normal for the past few years. We’ve been doing blood work and Liver scans every 6 months. I’ve done endoscopy which confirmed above finding of dialated Common Bile Duct and Pancreatic Duct with no obvious obstruction at the time.

I just had blood work done GGT, ALT, AlS,ALP etc are now all elevated in the out of normal range after years of being flat lined Alpha Fetal Protein remains just out of range and I’m always slightly anemic blood work wise. My Dr has explained he feels I have congenital Choledochal Cyst that will eventually rear its ugly head requiring surgery and reconstruction of all duct system

Has anyone else been considered for above cyst rather than PBC? I’ve started with extreme itchiness, hair loss, bloating occasional nausea and fatigue with inability to sleep more than 4 hours straight Im trying to learn more before my follow up appt about beginning of stages of PBC so I can ask the right questions of my Dr

I know this is long winded, ny apologies and in advance..I thank you!

[butterflyEi]

Hi Lilespo-

hello and welcome

certainly itchiness and fatgue are two of the main symptoms and for myself I wander from being able to sleep to not being able to with about 4 hours being the usual before needing a bathroom break but I do get off again. Without medication I am an itcher.

I wonder if you email the PBC Foundation they would be able to help you in the right direction (it is free to join and access their up to date and accurate web site however donations are always welcome). They also have one last Q&A for 2021 this coming Thursday with one of the specialist hepatologists who may be able to point you in the right direction. Access to this is via clickmeeting, the link is on their web site or on Facebook Live at 1400hours UK time.

On their website you will find a Diagnostic Tools page for professionals which you may also find helpful.

If you do think that you would like to email The PBC Foundation it may also be a good idea to send in a copy of your recent blood tests.

sorry not to be of more help but I hope you find an answer.