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PBC Foundation
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Not diagnosed, fits like a glove?

Just before I was 40, as my life was just about to begin, back in 2007 I took poorly with gall stones, and I had my gall bladder removed in 2008. the gall bladder surgery was horrific, my surgeon said it was the worst gall bladder operation he had to do in decades and instead of taking 20 mins it took closer to 6 hours. Later that same year I was back in hospital while they tried to figure out what was up with me as I still had all the symptoms. At sometime I got left alone with my medical records and as you do I had a peek. To my surprise the notes on my operation were written in plain good ol english.

My operation started with keyhole, but they had to abort that idea when they could not find my gall bladder. Opening me up like a parcel they discovered that my gall bladder was now concealed due to liver fibrosis, where my liver had seen it as an infection and covered my gall bladder in scar tissue meaning they had to proceed very slowly with a lot of care, working blind. As such rather than actually remove the gall bladder they did some magic jiggery pokery and sucked the bad stuff out, slicing, tidying off until I was left with minimal gall bladder and minimal stones in my biliary ducts. A bit like a roadside repair, enough to get me going again and as long I was willing to put up with things not being perfect it would sort of do.

For a long time before that, and since, I have been accused of using a sunbed, wearing fake tan, and being a bit orange and being able to "tan easily" because I am a funny colour. For the record, I am a fat, unattractive, balding male with motivational issues. And in case anyone does not believe me my motivational issues include forgetting to trim that bunch of wires growing out my ears and nose. A sunbed would fool no one and if fake tan was the answer to my desirability issues then I fear I would have to buy in bulk.

I have osteoarthritis especially in my lower spine, I had always had some back complaints but apparently the arthritis was easy to see on the xrays I was having at the time. It has progressed to the point of not being able to walk far at all, and always using a walking stick (or pimp cane as my eighteen year old step daughter calls it)

My skin itches like crazy at night, like a dozen spiders on my skin, no matter where I sleep. sometimes when I am awake sitting here I feel them, I look, but I see nothing, it is like they are underneath my skin.

So tiered, so so tiered. My perfect memory is now not so perfect, However, I discovered this is not all bad because I can now rewatch TV programmes and films without knowing what is going to happen. I watched 50 first dates for the umpteenth time last weekend with my mum who had not seen it before, and I got the irony as I tried to figure out what was going to happen next.

And of course, I still get pain and gurgles from that old liver of mine. Sometimes, when I eat just right, I can hear my bile ducts and my lower stomach having a right ol natter too each other, probably moaning to each other about my poor diet and their own misfortune to end up being my organs.

Any way, I have not got a clue if it is PBC or not, I suppose the right thing to do is point it out to my Doctor and see what tests he thinks I should have. What tests are there?

2 Replies

Hello kondor.

Well apparently any liver condition can cause itching anywhere on the body. I know exactly what you mean with regards to describing the itch. I started with the itch early 2010 and I still have it every night from around 11p.m. until 5a.m.

When I went to my GP and told him I was bothered about this itching I had bloods taken but at the same time he thought I might be allergic to something and prescribed piriton (didn't take). That seemingly is the norm at the beginning of trying to find out the problem. (Piriton won't work, it is an anti-histamine, the itch in PBC isn't the same. Some people with PBC however do take the one that makes you drowsy so the can sleep at night and sleep through the itch. I've never done this.)

My bloods turned up abnormal LFTs (liver function test) and also there were some parts of the FBC (full blood count) a bit abnormal too, also can be expected.

I then had a scan and that showed quite normal organs. I eventually (8 months on) saw a hospital consultant who took the blood test for antibodies, the AMA and ANA. AMA can diagnose PBC if suspected and I tested positive for that so along with abnormal bloods and itching (and fatigue at the time which vanished during 2011) I was informed I had PBC and started on urso Dec 2010.

Now what I did during 2010 after keep having abnormal bloods was to take stock and see if I could change anything dietary to improve myself. I always thought I did eat healthy, never been a smoker nor much of a drinker either. I cut out MSG in foods even though I used to check previously, checked for other nasties in foods/drinks meanwhile. I think a good diet is a good way to go as it can help you feel much better in yourself and give you a bit more energy if you are suffering from fatigue. I go on a lot of rambles and try to remain active. I feel better actually being on the go most of the waking hours as I don't feel the prickles of the itch that I do when I am sat down still. I only sit down and put tv on around 9p.m. nightly.

I am female of course and PBC is apparently more prevalent to females than males altho' males can develop PBC. Another liver condition called PSC (that stands for Primary sclerosing cholangitis) is one that is more prevalent in the male population than the female so maybe this is what you have? You can have the same symptons that one can have with PBC. Think I am certain that the AMAs are not positive for PSC.

Have you seen a doctor and asked him to recheck your LFTs and do a full blood count lately? It might be worth just doing so and mention any symptons that you are experiencing.

By the way the itch in PBC it is apparently supposed to be used bile salts going back up the bloodstream to be used for waste or recycled by the liver that are thought to be the cause. My theory is that these bile salts irritate the tiny nerve endings and that is where the itch comes in at random.

I also have a bit of skin bronzing myself where I tend to itch more. You can see it behind my calves as when I sit down or bend my knees I feel prickly where my knees bend and that causes me to itch which in then turn starts to turn a bronze shade. In the sun last year my arms to y elbows got a lovely tan but that's not quite faded and looks tanned still but my legs from knees down and feet that also caught sun, they seem to have gone back to looking the 'white' shade they normally are.

Hope I have helped you in some way and would be interested to know how you get on if you visit your doctor soon.


You need a Antimitochonrial (AMA) blood test. Plus a scan of some kind, they usually suggest an ultra sound scan which is the cheapest option and not very reliable in my opinion. I just had a MRCP scan today actually which is an MRI scan but specialised at scanning liver... Bile ducts ect.... Look into it then request one.

Did you mention that they cleaned up your gall bladder and left it in?

Google MRCP! If you have these two tests you will find out what's going on. Good luck x


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