How did you get diagnosed?

[Lauralee851]

Hi,

I'm still in the diagnosis process. AMA and ANA positive and symptomatic. I'm just wondering how did others get diagnosed? What investigations did you have? I had an MRI but not had results yet.

Thanks,

Laura

[enalynot]

I had man flu the second week paracetamol wouldn't touch it so I went to doctors and 3mths later after tests was told I had PBC more rare for a man I had the itch the year before just thought it was age related but I carry on as normal just get tired a lot wife says get a grip this is because nothing showing on the outside. ..

[Rosairobles in reply to enalynot]

Hello enalynot, the worst part of it all is that on the outside we may look normal, just fine, however in the inside its an awful mess and very difficult to explain to those who dont feel what we are feeling. Its an every day struggle. Hang in there, this site has been very helpful. I hope it is for you as well.

[Lauralee851 in reply to Rosairobles]

You are so right rosairobles 👍🏼

[jiacheetah in reply to Rosairobles]

Yeah it's not that I want to look sick on the outside but that is why I have not told many people at all - not even family.

[Lauralee851 in reply to jiacheetah]

That makes it so difficult though, if you are dealing with it alone!

[jiacheetah in reply to Lauralee851]

I told my sons and that was hard enough. My husband and a good friend knows as well. But these are the people I am closet to and I get all the support I need.

What you really find out as you get older is that many people wouldn't know what to say and others don't really feel their pain so what would be the point in telling them anyway?

I don't feel alone. I bask in the glow of my granddaughters and try not to waste too much time talking to people who won't get. I am glad I have found this forum for additional support.

[Lauralee851 in reply to jiacheetah]

Good, I'm glad you have plenty of support.

[Lauralee851 in reply to enalynot]

Hi enalynot,

Thank you for your reply.

I can imagine that is very hard to deal with. I'm surprised she doesn't take it seriously knowing you have the illness.

I have been under diagnosis for years (they thought I had rheumatoid arthritis and I also have hypermobility syndrome), I find it very difficult when I'm struggling to get through daily tasks with the extreme tiredness and end up just saying I feel fluey if people ask because i can't say why I feel like this without a diagnosis.

Take care,

Laura

[Hidden]

Hello Lauralee851.

I started itching early 2010 when I was at the time 45. Never thought much of fatigue due to working over allotted full-time week at the time.

Two weeks after putting up with the itch I went to see my GP. He did blood tests a week later and they showed my LFTs (liver function test) were above normal sop started taking more blood to check for various things and then he did one that decided if liver or bone related (you can apparently have elevated LFTs with a bone disorder). He rang me stating it was liver and I went for a scan at local hospital. (That showed normal looking organs.)

Over the months there was never any mention of PBC. I looked in library ref books first of all and stumbled across PBC and the looking online found the Foundation. The symptons I was experiencing seemed to be what I had. My GP never stated what it might be but he did at times state a blood check had ruled this or that out (one was Wilson's Disease - copper overload).

He referred me to hospital and I went for the first appointment beginning November 2010. Meanwhile the itch was still with me all the time. On my first hospital appointment the consultant after examining me and looking at my scan (he said he could see pretty clear bile ducts) and chatting said he was going to take some special blood tests that wouild check for certain antibodies. It was me who asked if one (the AMAs - anti-mitonchondria antibodies) was for PBC. He then asked me if I had heard of it. I just said I had read a bit about it. I hoped I hadn't PBC nor anything else and that I was just having some temporary glitch.

6 weeks later I got a call from my GP and he asked me to go in. When I saw him he confirmed the consultant had wrote to him and was making a diagnosis of PBC on the basis I had the AMAs in 'high titre' (my ANA check was negative) and at the time I had itching and also fatigue. I also had a higher than normal reading of another blood test used in liver disorders, the GGT along with the LFTs. I was diagnosed with PBC on the 3rd December 2010 and started urso. At that time I was 46.

I never had any MRIs just the bloods and the ultrasound. I am in the UK and if you can be diagnosed with symptoms, higher than normal LFTs and also have the AMAs then that is sufficient. I had no liver biopsy as seems to be the norm in the US. I have the bloods done at intervals and so far seem to be holding my own.

[Lauralee851 in reply to Hidden]

Hi Peridot,

Thank you for your reply.

I had an MRI done on Saturday so I will find the results of that when I see my gastro in March. I first tested positive did AMA and ANA in March 2015 so this has dragged on a bit now. My gamma GT's have been raised for years. I'm having my LFT's done today and some other bloods.

I'm finding it all a bit confusing as it sounds like on the basis of test results and my symptoms I would have been diagnosed if I had seen a different doctor. I don't feel like anyone I'm seeing really knows about it. My energy levels are declining and I feel like if they could help me with medication then I don't want to waste any time.

Thank you so much for the information and take care

[Hidden in reply to Lauralee851]

Hello again Lauralee851.

From starting to itch early March 2010 to diagnosis under the UK NHS it took 9 months in my case.

I find the wheels of the NHS work very slow indeed. GP said he wanted to do blood tests on my first consultation with him 2 weeks after I started itching. Once of a day a doctor would do the bloods there and then (back in the 1980s at the surgery there was a nurse who would fit patients in for certain GP requests so it was all done on the day), I had to wait over a week to return to surgery to see a nurse to take the bloods.

Subsequent bloods that were taken for checking various other things were also performed like this so in my opinion it took considerably longer to get to diagnosis than I think it should have done and meanwhile up until 3 months before the hospital appointment the LFTs (liver function test) were on the rise (for some reason my first blood checks at the hospital showed a decent drop in the LFTs when I had them redone at my first hospital appointment).

It has to be noted that urso isn't actually said to eradicate the itch or fatigue. I think the itch improves in certain cases (I am one) as the system is operating much better by taking it. I did have fatigue in 2010 but at some point in 2011 it just vanished. I've not got it anymore and hope not do to in future but I do get tired later afternoon some days due to night time itching that has caused broken sleep.

[Lauralee851 in reply to Hidden]

Hello again,

That is interesting-I have just had normal LFT's, meanwhile I'm feeling absolutely rotten and my GP is thinking it can't be PBC with normal LFT's. I know that they are always up and down though. It is very frustrating.

If I could take something to alleviate some of the fatigue it could improve my life so much. I'm really glad urso is helping you.

Take care,

Laura

[jiacheetah in reply to Hidden]

I am in the US and you are right. The biopsy confirmed the stage I was in. The elastography was more of an estimate but my AMA's were high so they already knew I had it.

[Rosairobles]

Hello Lauralee851, i went for a complete blood work and physical... after getting a call from my doctor indicating my liver enzymes were too high, doctor immediately scheduled me to a gastroenterology where i was then scheduled to get a liver biopsy to accurately determine what was wrong, i went hone after a few hours at the hospital... A couple days i was diagnosed with PBC and was placed on URSO..... now im dealing with swollen feet, hands and abdomen area. I also get constant itching especially on my back area and the exhaustion is at times overwhelming. .. anyhow, every three months i get blood work to monitor my liver enzymes. ... now all im looking for is ideas how to help the swelling and bloating feeling...... hope this helps

[Lauralee851 in reply to Rosairobles]

Hi Rosa,

Wow that all happened so quickly. It sounds like all though the liver biopsy is invasive it does the job very efficiently.

I have swollen hand and wrist at the minute too, am getting Physio and wearing a splint. Have you ever had steroid injections? Somebody told me they really help and somebody else said not worth it. I've been taking cocodamol and naproxen, sometimes phorpain gel for my arthritis but it's been giving me stomach cramps and making me feel drunk/tired, so I'm going to ask for an alternative. A lady I met at hospital on Saturday told me she takes 1 tablet a day of an anti-inflammatory and it's brilliant but I can't remember what it's called something like utroxin?

The itch sounds rotten.

Thanks again for your reply and take care,

Laura

[GrittyReads in reply to Lauralee851]

I don't know the drug - unless she was just muddling it with naproxen - but with this, or anything like ibuprofen, you need something to protect your stomach and gut from damage such as ulcers. I was given omeprazole, when taking ibuprofen for costochondritis.

However, I would check all of this (including what you are already taking) carefully as some say that such painkillers or anti-inflamms should not be taken if you have PBC.

I would contact the PBC Foundation (they host this site on 'Health Unlocked' and there is a link to them at the top of the page. Their advisors will help and the website has loads of useful info; also. if you join you get a compendium about PBC which explains all the liver enzymes, and other diagnostic tests, as well as discussing the various symptoms. Nb Symptoms help with diagnosis, but should not be confused with the actual diagnostic criteria, as the symptoms alone can be common for many other conditions, particularly autoimmune conditions.

As for PBC diagnosis: officially, according to UK/US/Eu diagnostic regulations, you need 2 out of 3 diagnostic criteria to be present/satisfied before a diagnosis of PBC is given.

That is:

1) the presence of AMAs (antimitochondrial antibodies) and/or;

2) abnormal liver functions tests (blood tests) typical of PBC and/or;

3) a liver biopsy that shows damage representative of PBC

Mostly 1 and 2 together are enough for a diagnosis of PBC, especially if there are symptoms. A biopsy is most likely offered when only 1 or 2 is present, but there are symptoms suggestive of PBC. As you also test +ve for ANA they may be doing far more tests.

Good luck - nb I would opt to see a liver specialist rather than a Gastro, and a PBC specialist if possible.

Take care.

[Lauralee851 in reply to GrittyReads]

Hi Grittyreads,

Thank you so much for your reply, really helpful.

I also take omeprazole when I'm on naproxen. I've mentioned my worries about the painkillers I take to my GP and rheumatologist as I've been getting painful stomach and feeling sleepy/drunk with codeine recently but they didn't really respond.

I have 1, LFT's OK at the minute but up and down. My IGM and IGA I think have been out too. I wish they would send me to a liver specialist but my GP says wait to see what the gastro says after my MRI and if he doesn't give proper answers then we'll go from there. It's a long and frustrating road.

Thank you so much, this message has been really useful.

Hope you are well,

Laura

[butterflyEi]

Hi Laura

My diagnosis came after a liver biopsy.

I had been itching for a few years before but GP intimated it was stress/depression. Later other symptoms like tiredness and heavy legs I put down to ageing. Turned out the heavy legs was because I was very anaemic. It was about this point I was given a blood test to see what was going on to find that my LFTs were elevated. The liver biopsy is quite invasive and I am glad to know that other methods of diagnosing PBC are being developed such as ultra sound and MRI scan.

best wishes

[Lauralee851 in reply to butterflyEi]

Hi Butterfly,

Goodness me I can sympathise with the heavy legs! It is absolutely awful. Because I don't have a diagnosis yet sometimes I used to think I was just being soft and needed to get on with it. It is really overwhelming though, the tiredness is the worst thing for me. I have a 14 month old lovely, energetic toddler to look after too.

I had an ultrasound before I developed symptoms of my abdomen which was normal but apparently it's a specific kind of ultrasound you need and that wouldn't do it. I really wish I was seeing a liver specialist and I felt like they really knew their stuff.

Thanks again and take care

[teddybear7]

Mine came after bruises I couldn't explain. Ana & ama positive. Not had an MRI but an utra sound scan to rule out other things. They wanted a biopsy but as I was symptomatic they didn't do one as I objected to it. Put me on urso & that's it. A biopsy will confirm it. Two years down the line & more symptomatic now doing a biopsy June time to stage it.

[Lauralee851 in reply to teddybear7]

Hi teddy,

I'm glad they managed to deal with it without you having a biopsy so far and I hope it isn't too bad when you do have one.

Has the urso made a difference to you?

Thanks and take care,

Laura

[teddybear7 in reply to Lauralee851]

I have no side effects from the urso. My bloods go up and down which seems to be normal. I am getting more symptomatic hence the biopsy in June I just pray that they're doing what they are supposed to do. It's not till June cause they're testing my vitamin absorbsion one at a time which will take till then. X

[Lauralee851 in reply to teddybear7]

I hope it goes well for you,

Take care,

Laura

[Gioielli5]

I believe that unusual Liver Function Tests, particularly high alkaline phosphatase level accompanied by being AMA positive will be enough to diagnose PBC. My apl was 8times higher than it should have been when first tested. 10 years ago in Oz but not tested again until 6 years ago when about 4 times over and positive AMA led to diagnosis. Been on Urso since then and feel much better although odd days of extreme tiredness. Take care x

Julie

[Lauralee851 in reply to Gioielli5]

Hi Julie,

My APL was normal this time, as were all LFT's. They have been up and down for over 10 years actually-which know I think about it, is strange it was never picked up.

Glad to hear urso works for you and so many people, gives me hope it could help me.

Take care,

Laura

[Gioielli5 in reply to Lauralee851]

Hi Lauralee, First had abnormal LFTs in Oz when blood test for tiredness and pain in chest. After ultrasound showed liver was fine nothing done about it. Returned to live in UK and 4 years after first test had blood test and as LFT showed raised Alkaline phosphatase level and AMA+ sent to liver specialist at Southampton. General hospital and diagnosed with PBC and put on Urso. I have never really had the itch and just suffered tiredness but as teaching full time thought that was the only reason. Really pleased I had follow up blood test here and got put on medication. My APL is now only double what it should be and can manage tiredness. Still have chest pain under ribs on right side at times but generally quite healthy.

Hopefully you will find a difference with diagnosis. Take care x

[Debbiem40]

I had swollen ankles a couple of months after my son was born in 2002 so I went back to my GP who took blood and sent it off to test my kidneys. My LFT came back showing a raised enzyme that is apparently either raised in pregnancy or PBC - he rang me with the results and kept asking if I was pregnant, I was like No, I just had him 3 months ago!!! Anyway I was referred to the Liver Clinic at QEHB where they diagnosed PBC - just ultrasound scans and bloods no biopsy needed. I've never had any symptoms then or now!!

[Lauralee851 in reply to Debbiem40]

Hi Debbie,

What did the ultrasound show?

I had a general abdominal ultrasound before I started getting symptoms, which was normal, but I'm hearing people have a specific fibroscan which is more useful for PBC?

Hope you're well,

Laura

[Debbiem40 in reply to Lauralee851]

I have regular ultra sound scans, once a year, I don't really know what they show as they've never really said, I guess it shows the state of your liver.... I do know they found a gallstone in 2012, but this is a common thing and most people don't know they've got them.

I think I've had a fibroscan, I had an odd procedure once where the doctor sort of tapped on me with this piece of equipment, hard to describe really!!!

Hope you're ok.