How is pbc diagnosed

[Oldbloke1]

Hi just a quick question I've been suffering from fatigue and muscle pain and stomach problems pain in the right side and the back hurts more after eating, plus itching and rashes sometimes I also have a dry mouth and eyes and indigestion all the time. Also having memory problems I've had a ultrasound and CT scans stating I have fatty liver and my blood test are ok apart from GGT just wandering how pbc is diagnosed

[Zelda5]

Well sounds like I was reading my own symptoms. I've not been diagnosed. I'm still going thru the process. My Hepa thinks my high Alp is caused from fatty liver. So, if I lose weight then keep retesting high in Alp, then I'll probably get diagnosed. You have to have two out of three for a diagnosis. Most are diagnosed with a high Alp and a positive Ama/Ama M2. Or you can have a biopsy done. A biopsy only tests 1/50,000 of the liver, and pbc in early stages can be patchy and focal. So, it can miss it, especially in early stages from what I understand. I think Drs usually go by blood tests unless there's question of other liver disorders. There is also Ama negative PBC, but I don't think it's very common. Do you have a high Ama and Alkaline Phosphate (Alp)?

[Oldbloke1 in reply to Zelda5]

I haven't had a ama blood test my GP doesn't seem interested I've asked the surgery I want to be referred to a hepatologist but I've been told to ring back Monday my GP is not very helpful this has been going on for over 2 years now and I'm not getting anywhere I've got a private online liver test to do the postman is picking it up Monday. Thanks for the reply

[Zelda5 in reply to Oldbloke1]

Yeah I'd keep trying to get in to see a hepatologist. If your eyes and mouth are dry. I'd ask for Sjogrens testing or have your Ana antibody checked. I have the eye thing too and mouth is dry at times. In my case, my Ana is high but subsequent tests are negative. But, enough that the Rheumatologist has me coming in every 6 mos for tests.

[Oldbloke1 in reply to Zelda5]

the doctor hasn't tested me for sjogren's syndrome either

[Oldbloke1 in reply to Zelda5]

My alp was 49 in July I've had another blood test since but there not on my GP surgery app but I was told they were ok apart from my GGT

[Oldbloke1 in reply to Zelda5]

Do you ever get a runny nose in the mornings

[Zelda5 in reply to Oldbloke1]

No not really but my nose gets stuffy at night

[TylerA]

Elevated alkaline phosphatase and a specific autoimmune antibody known as AMA are the markers for a diagnosis of PBC. These can be checked via a routine blood test. The PBC foundation are very helpful if you want to ask them any questions about PBC.

[Oldbloke1 in reply to TylerA]

Thank you

[Oldbloke1 in reply to TylerA]

Are ama done in a fbc

[TylerA in reply to Oldbloke1]

Not as a matter of course - your doctor would have to request it.

[Oldbloke1 in reply to TylerA]

Thanks

[gillrich in reply to TylerA]

Pbcfoundation.org.uk

[Buttsy]

Hi,

These are my symptoms to a T , I too have had MRI,ultrasound and CT of abdomen all okay, I first I was convinced the stomach issues may be Gallstones but I recently had a HIDA scan that showed gallbladder all okay. I have been to a gastroenterologist who as run a few test and extensive blood test. I knew I was ANA positive for anti centromere and I am under the Rheumatologist for possible limited Systemic Sclerosis but he is reluctant to actually diagnose this ,I get possible, probably ever time, I informed him of all these symptoms but again he says he doesn’t think any of them are related.I recently had my bloods done at GP and that showed a B12 deficiency which I have never had before.I have been having injections for that and get another blood test in a few weeks, he asked about my diet but is the same as before so I don’t know any reason for the sudden drop in B12 unless it’s the stomach problems.

I share you issues with GP they don’t seem interested and just seem to want to give you and pill and make you go away.I worry that if i haven’t been diagnosed then my treatment may be wrong or lacking.

Good luck and hope you get some answers,

[Oldbloke1 in reply to Buttsy]

My b12 was 2000 last time i had a blood test a few days after b12 injection

[Buttsy in reply to Oldbloke1]

So what explanation did they give for the B 12 being that high ?

[Oldbloke1 in reply to Buttsy]

The b12 injection 2 days before my blood tests

[Oldbloke1 in reply to Buttsy]

So is he saying there not related to the liver thanks oldbloke1

[TallSurfer72 in reply to Oldbloke1]

Elevated B12 can indeed be caused by supplemental b12–whether injected or ingested

[Oldbloke1 in reply to Oldbloke1]

I've got the world's worst gp

[Buttsy]

my Rheumatologist,

Seems to think my symptoms aren’t related to systemic sclerosis or PBC , I have asked to be referred to another specialist in systemic sclerosis, whether that will happen I don’t know ?

I am back at the gastroenterologist in 5 weeks and will ask about PBC and liver at my appointment, but as it’s only my ANA centromere that’s positive >8 the Dr seems to think I don’t have PBC but I do have same symptoms as you.

[Oldbloke1 in reply to Buttsy]

I've got an gastroscopy on the 27th

[CeeCee101 in reply to Buttsy]

Symptoms matter but without the blood tests, particularly AMA, AMA M2, IgM 2 positive as well as a higher end ALP likely something else. Keep seeking answers.

[Oldbloke1 in reply to CeeCee101]

Thanks for the reply

[Oldbloke1 in reply to Oldbloke1]

My alp was 49 in July

[Buttsy in reply to CeeCee101]

Thank you

I will,I have been reading about the chance of AMA negative PBC ,I know it’s only 5% chance of that. My IgM levels are low and my serum globulin is abnormal,low at 22.9 my Dr said oh that’s just you ,you are low ?

Thanks again I will keep on looking for answers.

[Oldbloke1 in reply to Buttsy]

What is lgm levels, my globulin was 33 in may yours is in range

[Buttsy in reply to Oldbloke1]

No mine is low on blood result shown up as abnormal,by lab ,normal range with this lab is 24.00-43.00g/L. Range varies depending on lab and how measured.is yours in g/L ?

[Buttsy in reply to Oldbloke1]

IgM is immunoglobulin level in blood

[Buttsy in reply to CeeCee101]

Thank you

I will,I have been reading about the chance of AMA negative PBC ,I know it’s only 5% chance of that. My IgM levels are low and my serum globulin is abnormal,low at 22.9 my Dr said oh that’s just you ,you are low ?

Thanks again I will keep on looking for answers.

[Buttsy in reply to CeeCee101]

sorry I have sent same comment twice , the reply was for CeeCee 101 but keep going on Oldbloke 1 chat

[Oldbloke1 in reply to Buttsy]

Thanks

[Buttsy]

I have a blood test to check B12 in 10 days

[Oldbloke1 in reply to Buttsy]

Last time was in July when I had a b12 injection 2 days before I had a fbc, liver, and kidney blood test my b12 was 2000 Ng/l and my alp was 49

[Buttsy]

yes I had a gastroscope and hoch showed nothing , not sure what he looked for but said it was all okay. Good luck

[Oldbloke1 in reply to Buttsy]

Good

[Oldbloke1 in reply to Buttsy]

Thank you

[Oldbloke1 in reply to Buttsy]

Thanks