Do i have PBC or not? very confused😕

[Deeplydepp]

Hi guys, long story short. Saw rheumatology several years ago- diagnosed with PBC. Sent for ultrasound of liver, gallbladder and pancreas- pancreas puckered ( I was nil by mouth) liver and gallbladder bladder fine.Now, when I next saw gp, a year later she said yes I definitely have PBC, but not active - will ultrasound yearly, and bloods every 6 months. Great I thought. 2 was later another gp rang and said it was too expensive so 1 blood test a year will do. Since then (2017) I have had yearly bloods. Recently I've been having major digestive issues, and feeling rather crap. I had quite alot of PBC symptoms- new gp said I have serum PBC? WHAT is going on who do I listen to? New gp will not refer me to heptology? Any answers or suggestions greatly appreciated. Stay healthy xx

[Cat1218]

Hi, I would write to your GP and request a referral to Gastroenterolgy. I got diagnosed through an AMA blood test. 95% of people with a positive AMA result are more than likely to have PBC. I have no idea what serum PBC is. ALP and GGT can also be elevated. Hope this helps.

[Deeplydepp in reply to Cat1218]

Thank you so much for your reply, I saw gp 2 days ago she point blank refused. More interested in pushing hrt- for bone pain! Tried it before- bad reactions. I will write to them, and include some literature from pbc site. Thank you again. Stay sane xxx

[Cat1218 in reply to Deeplydepp]

Hi again, on what basis did they diagnose PBC, they must have done some tests to diagnose it. You GP does not sound very helpful at all. If you have got PBC then you should be prescribed Ursodeoxycholic Acid.

[Deeplydepp in reply to Cat1218]

Hi, I was diagnosed by rheumatology specialist. Yes I was being checked for rheumatoid arthritis. Got a letter back saying I had tested positive for PBC antibodies. GP then sent for ultrasound, puckered pancreas but all else fine. Nothing since apart from blood tests. Last year's was abnormal, this year's within range. So I have no clue at all. No talk of any treatment whatsoever- not even for the itching or bone pain! Very depressed about it. Hence reaching out to you wonderful guys xxx

[Cat1218 in reply to Deeplydepp]

Make sure to contact your GP or even the Rheumatologist who you saw, tell them how concerned you are about this. I hope that you get some answers, you should have been referred to Gastro. Please let me know how you get on, good luck and insist on seeing someone about this, do not be fobbed off, speak to you soon.

[Deeplydepp in reply to Cat1218]

Bless you, and thank you so much for replying! I will keep you posted ! Thank you again xxx

[Eppy]

Hi i was diagnosed this year with PBC through blood test was referred to hospital prescribed Ursodeoxycholic acid 500 x2 per day

Then had bone scan got osteopenia

blood tests x2 appointment with consultant follow up in April

Please try again with GP if no Joy try ringing Rheumatologist secretary and see if they can help

I think some of the problem is no one has heard of the disease, i work in healthcare and just get a blank face when say ive got PBC

Wish you all the best

[Deeplydepp]

Hi, thank you for replying. I think I will try reaching out to rheumatology as GP is being very difficult xx thank you. It's definitely a relief to hear back from fellow "sufferers"- reassuringly. Thank you for listening. How are feeling on the urso? Xx

[Eppy in reply to Deeplydepp]

im feeling ok did have some waves of nausea for few weeks but that has settled and my itching comes and goes but i found this lotion really helps Dermol 500 & antihistamines if it doesn’t settle

[Deeplydepp]

Wow, thanks that's great. Keep in touch let us know how you get on xxx