Janj: So so worried I can hardly function and... - PBC Foundation

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So so worried I can hardly function and wondering if anyone can help alleviate my troubles. I recently had ANA test for lupus by my Dermatoligist to rule out lupus for marks on my face. This has come back with mitochondrial showing and I now await results of AMA. He said he wasn't unduly worried as my liver function was fine but needed to be certain. I now understand AMA is carried out if PBC is suspected. I'd never heard of this until now and have myself with all sorts of problems! Has anyone had mitochondrial antibodies revealed in ANA which were nothing to worry about? Really welcome your views guys.

8 Replies

Hello Olivia1253.

Back in early 2010 I started itching intensely and it persisted for a fortnight so I took myself off to the doctor. He took the liver function test (LFTs) and full blood count as routine and it was found my LFTs were abnormal. The GP exhausted blood tests he could do and by early November 2010 I was seen in hepatology outpatients by a consultant. That day he did the antibodies checks, the ANA and the AMA.

I was diagnosed with PBC early Dec and it was found I had, what was wrote by the consultant in his letter 'high titre' of these to give him diagnosis of PBC due to having abnormal bloods and also symptons of PBC (on-going itching and at the time fatigue). My ANAs were found to be negative.

I have read on tnis site by other posters that they have been found to also have a positive for ANAs as well as AMAs.

I am not a medic so can't say for certain but it seems that some can have AMAs and not have PBC but usually a certain reading of them is a good indicator of PBC. I am in the UK and the AMAs tend to be a standard for diagnosis these days if the patient has abnormalities with the LFTs and also symptoms of PBC. I had all 3 factors.

It is said that certain patients diagnosed with PBC might never have any symptons and it might never progress. In the event you are diagnosed with PBC then I think currently given you say you have normal LFTs you'll probably be monitored by blood checks at intervals.

I have been diagnosed now for over 5 years and it isn't far off having the itch for 6 years. I've not as yet developed any other symptons of PBC and during 2011 at some point the fatigue vanished. I just get tired later in the day these days due to broken sleep caused by night time itching. I am not far off being 52 by the way.

The only thing you can do now is to look after yourself even better than you thought you did. (I was never sick prior to itching in 2010, hadn't had a GP prescription for 11yrs until Dec 2010.) If you are diagnosed with PBC then a few changes might be for the better. In my view you get a bit of a heads up even though none of us want PBC as I know now I'd have made a few slight changes myself had I known I had PBC and didn't have any symptons.

Olivia1253 in reply to Hidden

Thanks for replying Peridot.. I really just need to try and relax. Don't know you cope with itching as that alone would drive me crazy!! You are all so brave and I wish you all the very best of everything. I don't have itching or abnormal LFT so keeping fingers and everything crossed. Do you know how long you had to wait for results of AMA please? Xx

Dermatoligist just said ANA showed low levels of mitochondrial antibodies and he had been advised to do AMA. I also have stage 3 Chronic Kidney Disease which has been stable about 10 years so guessing they won't give me meds anyway unless I really need them..x

You can be what they call A symptomatic at the start if they've caught it early. I had no other symptoms at the beginning. They've developed over time. If & when , you get a positive diagnosis. Don't panic, take a deep breath, join the PBC foundation as a member you can access their compendium which will answer your questions & ring them for advice. They've been a God send & enabled me to crack on & live life to the full.

Hidden in reply to Olivia1253

Hello again Olivia1253.

From my first outpatient appointment with the consultant, I had about 6wks for the diagnosis after the AMA blood test. I have found the wheels of the NHS turn very slowly.

I feel during 2010 I could have been diagnosed with PBC much sooner, started urso that bit sooner and might not have had to endure the itching 24/7 quite as long.

It's said the AMA is a more specialised blood check and I'm in Lancashire, England. The LFTs and my FBC plus GGT goes off to the local pathology of the local hospital as they are quite standard. The AMA (and the ANA) goes off to Preston as I was informed by the consultant when he took mine, he said it would take that bit longer.

I would have been diagnosed about 2 weeks earlier had the consultant not gone through the standard of having his secretary type up a letter, send it to the GP who then had to find time to read through it and then write on it. The receptionist then rang me asking me to go in as the GP wanted to see me to give me medication (no mention of PBC of course, not her job. I asked what medication which she did say so I knew I was to be informed I had PBC) and then proceeded to give me an appointment a week later. I was not happy knowing what medication it was so my husband grabbed the phone and argued the point so we got an appt before the end of the day's surgery.

It is all very scary but, as you can see from replies, we are all living with it and not despite it. I would suggest contacting the PBC Foundation (they have a website) and they have advisers who can chat with you and help allay some of your fears.

It was about 8 month before they finished all the tests on me 2012 before they found out I had PBC. They also found some sort of abnormality on my gall bladder which they have just decided to look at now hence have to have my gall bladder removed in about 8 weeks I still get the itch now and again some times at the point where I don't sleep the whole night .I was never ill before I was diagnosed went to doctor about itch and being tired now I have osteoporosis in my spine arthritis in most of my joints I will be 68 next month only retired 4 year ago

Thanks for responding and hope your gallbladder removal goes ok. Had mine removed about 15 years ago and it all went well. Yours will too!! X

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