PBC/AIH overlap new diagnosis don’t know what to expect

[Nt14]

Hi all, new to this but seeking some advice.

Had dark urine and bit of itching so sent for blood test which showed very high levels of ALT. Ultrasound and MRCP showed nothing abnormal but further bloods tested strongly positive for AMA. Consultant suspects PBC/AIH overlap because of the high ALT and has said will need liver biopsy. Have since had fibroscan and further bloods and been prescribed URSO. I now haven’t heard anything further from hospital and don’t know result of fibroscan . I have never had a face to face consultation due to COVID. Just one phone call which was a blur and a copy of letter sent to GP. I have no advice or support and no real clarification to what to expect.

How long should I wait for results? Or a liver biopsy? Anyone offer any advice, I feel i have been left hanging and messages left with hospital never answered. Thank you.

[ninjagirlwebb]

Join the pbc foundation and they can help you with navigating this.

Not sure the wait times due to covid and its impact on the UK health system. Others more familiar can answer.

If they put you on urso, means they are treating you for pbc. A biopsy will determine whether you also have AIH which needs to be treated with immunosuppressants. It would be best to have a biopsy as soon as possible so that you get treatment if needed.

Fibroscans measure liver elasticity to assess whether the pbc has cause any damage to your liver and can also show if you have a fatty liver. Those results are available immediately after they complete the test. The doctor just has to review and interpret it for you. How long it takes for that to happen depends on the facility and how quickly your doctor gets back to you.

I am in the US and my doctor reviews the fibroscan with me immediately after the test. This is not the norm. He is just very accommodating.

Perhaps you can ask your GP or staff to chase the results and follow up on getting the biopsy for you if the hospital is not returning your messages, presuming you can call the GP directly or send him a message via a patient portal.

Hope this helps. Try to get someone who can chase for you who is inside your medical network. They have more influence vs you. Good Luck.

Haley

[Nt14 in reply to ninjagirlwebb]

Thank you so much for taking the time to reply and for your advice. It can feel quite isolating when there is no news and you have no idea what’s going on.

I think enough time has passed that I will ask the GP to help find out what the next steps are.

Thanks again

Nicola

[ninjagirlwebb in reply to Nt14]

No worries. Yes...it is very scary and you sort of feel lost. This pandemic has also added to that stress. But remember you are not alone...we have an entire pbc community who went through what you are going through.

Yes, the GP should help you. You just have to move the process along a bit. Make friends with someone on their staff and they can nudge it along on your behalf.

[Skypony]

Hi Nicola Welcome!

Haley has given you some great advice. May I just add, when needing information from a hospital, the PALS service often produces great results, and every hospital has one I believe. Sometimes you have to leave a message but they do get back to you. Their role is to create a link between patients and staff and ensure that you get the information you want, usually quite promptly. Hospitals may also have a ‘patient service manager’ as a second option. Ask the switchboard.

I hope that you’ll feel better about things when you have the information you need, as uncertainty is often the hardest part. A phone consultation does of course feel more distancing, but if another one is booked for you following receipt of your results, make a list of what you want to ask and don’t let the call end until you’ve understood everything.

Do take heart from the fact that you’ve already been started on some treatment, and that there’s lots of support available. Please let us know how you get on.

Best wishes.