Advice please

[Palebluesky]

Hi just wondering if anyone can give me an idea of waiting times from my GP discovering the AMA M2 antibody to actually seeing a liver consultant please? I've had an ultra sound scan but haven't received an appointment with consultant and been told today there's a six month waiting list. Seems a long time for me to wait to be told if I have PBC or not. Feeling quite worried at the moment

[jjones78]

Hi Palebluesky

I assume you are in the UK and unfortunately there are long waiting lists in the NHS to see a specialist.

Many patients are diagnosed with positive AMA (Antimitochondrial Antibody) and abnormal liver tests, particularly ALP (Alkaline Phosphates) and GGT (Gamma-Glutamyl Transferase). Do you know the results of your liver function tests?

There is lots of really useful information available from the PBC Foundation (pbcfoundation.org.uk ) and they also have a community in Heath Unlocked. I know it is really worrying but there is lots of support available.

I was able to go privately through my work for my first appointment to see a consultant to get a diagnosis otherwise I was told it would be 3 months for an urgent referral and 6 months for a normal referral.

If you are positive for AMA and have raised liver enzymes your GP might be able to diagnose you and start medication. Please read the information on the PBC Foundation website and you can also call them for advice.

[Palebluesky in reply to jjones78]

Hi thanks for your reply my Alp was 102U/L so within normal range I think no results for GGT so assume I haven't had that test. Have had ultra sound but when I phoned the surgery for results was just told I had been referred to specialist. Now on a 6 month waiting list! GP gave me a load of PBC information sheets and links to PBC foundation so have read through that but there are a few things that I'm not clear about with regards to antibody blood tests

[GrittyReads in reply to Palebluesky]

The ultrasound is largely just to rule out other issues: eg general abdominal problems, plus pancreas, large bile duct, and gall bladder issues, etc. So if all was clear, that's good. An ultrasound can spot 'mass' scarring of the liver, but you would know if things were that bad. However, it cannot see damage to small areas of the microscopic biliary tubules, that PBC can damage, and you would need a liver biopsy for that.

However, if your liver function tests (lfts, eg: ALP, ALT, AST) were good, it may be that you 'just' have AMAs, which is not itself a major concern - although you would need annual blood tests in case PBC does develop. That's what I have - just AMAs - as do about 8% of the population, most of whom do not go on to develop PBC!

Try not to worry, but do talk to the 'PBC Foundation' (see link at top for their website). They 'host' this site on 'Health Unlocked' and are a mine of info and help. I would also try to get a copy of all your lft results, to check them against the levels that the 'PBC F' site will tell you about. If any tests are missing - eg the GGT - I think you should ask your GP to do those, now, as if GGT is raised I would expect them to speed up your referral. My GP did not do GGT either, and years later I discovered that my consultant sets more store by it than is generally mentioned on PBC sites.

Hope this helps. Above try not to worry - always the worst. Treat yourself, have fun, and try to relax and chill. Hard I know, but spoil yourself a little, while improving exercise and diet - more advice on this on the 'PBC F' site.

Take care,

Gritty

[jjones78 in reply to GrittyReads]

Hi Palebluesky

I was just about to say that you should post on the PBC site on Health Unlocked as I know that there are people there who have positive AMA and normal LTFs. I was actually thinking of you Gritty😊

[GrittyReads in reply to jjones78]

Hi jj78,

I'm a Jones too!

Gritty

[Palebluesky in reply to GrittyReads]

Thanks for that has made feel a little bit less anxious for now

[GrittyReads in reply to Palebluesky]

PS Sorry, I had forgotten that we were not on the 'PBC Foundation' website. They do have their own 'help &advice' site here on 'Health Unlocked', so you should be able to find them. Or Google 'PBC Foundation' … 'but ...' don't bother with any other pbc sites, as most are useless, out-of-date, and over-scary.

Take care, and do get your GP to check GGT.

Gritty x

[StinkyHannah]

Hi Palebluesky.

I’m in a similar boat.

I had raised ALP, then followed up with the autoantibodies blood test among other things (for hep b, c etc) and tested positive for ANA. My symptoms are fatigue and nausea.

Was sent for ultrasound and 3 lesions found, 2 are benign but they are querying the 3rd. I’m going private through work to see a hepatologist as my GP gave me the impression I wouldn’t get an urgent referral (not lost weight, not jaundice etc).

Still a 3 week wait to see consultant privately but I should get the MRI done quickly.

I can’t help you but I understand what you are going through. I’m trying to stop googling possibilities of Autoimmune hepatitis.

Def ask your GP reception for a copy of all your blood results.

And sit tight!

[Palebluesky in reply to StinkyHannah]

Hi thanks for your reply I had a copy of my blood results and from what I've interpreted are within normal range but haven't been able to get scan results yet! Receptionist just said I have been referred to specialist! I guess I need to go back to my GP to discuss the scan results! I'm actually getting confused as to wether she has diagnosed me with PBC or wether she has referred me to gastro team to be diagnosed! I understood her to say that I may have it but reading all the information on line it seems almost conclusive that if you have the antibodies (which are marked as high on my blood results) you have it! I'm not ill as such and this thing has been picked up by chance whilst investigating joint pain and tiredness! It's the not knowing that I'm struggling with at the moment but I guess that's the same for everyone isn't it! One thing this forum has shown me is that I'm not alone here.

[StinkyHannah in reply to Palebluesky]

It would be so much better for patients if the GP would make a call direct to us after reviewing tests rather than getting the secretary or receptionist to ring!

My mind has been all over the place but felt better once I could read the report myself.

Have you made an appointment to go back to your GP?

[Palebluesky in reply to StinkyHannah]

Hi no not yet I did phone surgery yesterday to speak to my GP but she's not in till tomorrow and as I'm on nights now I probably won't get a chance till the end of next week! I just wish I could somehow put it to the back of my mind instead of it being the only thing I can think of at the moment.

[StinkyHannah in reply to Palebluesky]

I totally understand.

I’ve been on google overdrive the last 2 weeks.

Next Wednesday I will see the hepatologist so not too much longer for me.

Good luck with it and keep us posted once you do get some more info. Hopefully you can get some answers from the GP soon.

Best wishes.

[Palebluesky in reply to StinkyHannah]

Thank you and good luck with your appointment keep in touch