Primary biliary cholangitis

[Barneymiller]

I'm experiencing all the symptoms of pbc I've had CT scans, ultrasounds, liver function tests colonoscopy, gastroscopy gastritis diagnosed but I've never been tested for pbc and I think I'm nearing death I feel so ill. My GP won't help I just don't know what to do anymore I have a dry mouth dry eyes muscle cramps, weakness, fatigue gastric problems, bloated All the time, gastritis, flatulance, dizziness,sleeping problems, paresthesia, feeling cold all the time, osteopenia, avascular necrosis of the hips right side ribcage pain I have trouble walking, bone pain, GGT 78 alp 49 memory problems I feel I've been abandoned I've rang healthwatch and contacted medical complaints I'm getting nowhere

[butterflyEi]

It may be a good idea to contact the PBC Foundation's help line. Full details are on their website when contacting them have your liver function blood tests available as they may want information from those tests. They have a medical board who may give you best recommendations

[Barneymiller in reply to butterflyEi]

Thank you

[Barneymiller in reply to butterflyEi]

I've got liver function tests results, but I haven't a a AMA blood test

[Cat19]

Hi sorry to hear you feeling so unwell

I was diagnosed 24 years ago with PBC and the PBC foundation uk have given me advice several times I got to speak to Robert try them good luck feel better

[Barneymiller in reply to Cat19]

Thank you for your help and reply

[Cat19 in reply to Barneymiller]

Any time do hope you feel better 🎂👍🤩

[Barneymiller in reply to Cat19]

Thank you

[Lu11]

Demand an ANA and AMA M2 blood test. If positive, demand to see a liver specialist. It’s your body, your health. Keep us posted please! 💓

[Barneymiller in reply to Lu11]

Thanks

[Barneymiller in reply to Lu11]

Will do

[hells456]

Did you get fed up being thrown off the BLT site, so you've come over here?

Your GP won't help because most of your issues are due to anxiety, not liver disease. Please tell your doctor that you need more help to cope with that.

[Barneymiller in reply to hells456]

You know nothing about me I have joint and muscle pain gastritis pain gets worse when I eat bowel cramps frequent pooing and urinating nausea bloating constant flatulance constant feeling dizzy and cold all the time itching spider veins on the top my chest avascular necrosis of both hips osteoporosis dry mouth dry eyes dry skin and liver pain also a yellow furry tongue and insomnia migraines paresthesia constant indigestion and getting weaker each day I also have memory problems and I've lost a stone in weight over the last month I've never been tested for pbc but if you prefer to mock that's up to you

[Barneymiller in reply to hells456]

No reply I thought so

[gwillistexas in reply to Barneymiller]

My reply was for hells456.

[gwillistexas in reply to hells456]

I’m not meaning to be critical of your reply but we are not on this forum to judge or diagnose. We are here to discuss and encourage our PBC family.

[Barneymiller in reply to gwillistexas]

My reply was for hells456

[Widdy99]

If your liver function tests are ok it’s unlikely to be pbc.

I had many symptoms similar to your and a family member with pbc. I was convinced I had it too but after many years of testing I was diagnosed with Sjogrens.

Hope you find an answer soon and start to feel better.

[Barneymiller in reply to Widdy99]

Thanks I hope you're right the pain tells different

[Zelda5 in reply to Barneymiller]

But you have ARLD I thought. Why do you think it's PBC. You have no markers for that except ggt. Which may be elevated in other liver diseases. Your Alp is not elevated and you haven't a positive Ama test. You could ask your Dr for an Ama test. It wouldn't hurt anything. The dry eyes and mouth could be Sjogrens but you need an Ana test for that. Other things may cause that too. It just so happens that's listed in Pbc symptoms because Sjogrens sometimes clusters with Pbc. I think about half of Pbc patients have it, but not all.

[Zelda5 in reply to Zelda5]

pubmed.ncbi.nlm.nih.gov/610....

[Barneymiller in reply to Zelda5]

I ask the doctor doctor for both and I was told they would do another ultrasound I feel like I'm banging my head against the wall with these NHS gps

[Zelda5 in reply to Barneymiller]

Yeah I feel for you. It's definitely a process they put you through. Have you stopped drinking or modified your diet as far as your initial diagnosis. Hope you start feeling better. Good luck with everything.

[Barneymiller in reply to Zelda5]

Stopped drinking a few months back and cut out fatty foods I've already ready had an ultrasound and a CT scan which says fatty liver my mouth is is getting dryer by the day I asked the doctor for a fibroscan and he refused I also asked him to see a hepatologist he refused that as well saying 2 of blood enzymes have to be high only GGT is raised at the moment 91 I can't understand why it's at 91 when my last blood test said 78 and I haven't touched alcohol since that blood test also I checked my lft's from the past and my alt and GGT have been raised I'm gonna ring the doctors again tomorrow I feel like I'm gonna die without being diagnosed