Pbc???? Diagnosed 3days ago

[Clairetopaz]

In Feb 2013 I had routine bloods taken, I tested strongly for mitochondrial antibodies. I have been sent from neurologist, to gynae, back to GP and then finally to a gastroenterologist this week.

I got asked am I itchy? NO! Do I get tired easily? NO! Have I ever turned yellow? NO! Is my urine dark in colour? NO!

I got told my ultra sound scan showed no signs of cirrhosis.

The consultant had a feel of my tummy, couldn't feel anything.

Then concluded by saying the blood tests are saying I have the gene for PBC but at present I don't have it.

The only pain I have is on my right side, above my pelvic/hip.

My question is..... Should I worry about this pain, is it related to this PBC condition?

I'm 37, hardly drank in my life, do not smoke and have never smoked. I'm overweight, have polysystic ovaries, anxiety disorder and coccyx pain.

My medication is citalopram and pregablin.

My consultant does not want to see me for 6 months, on my return to her I need recent blood tests.

So basically I'm in limbo about what to do now

[Hidden]

Hello Clairetopaz.

It appears that due to AMAs the antibodies you have PBC but it would be considered asymptomatic presently due to no symptons associated with PBC. I presented in 2010 (I was 46) with itching and at the time fatigue. I had a scan 3 months later as blood tests started to exhaust but the LFTs were continuing on the gradual increase long with the GGT.

My scan showed a pretty normal liver and other surrounding organs. My stools had a gone a bit paler in colour, urine was normal.

I ended up 7 months on at the hospital for the first visit and had the AMA blood test that day. 2 months later I was said to have a 'high titre' of the antibodies and due to continuing LFTs and daily itching I got diagnosed with PBC and started on urso Dec 2010.

As I understand it if one has AMAs and is asymptomatic and LFTs are normal then urso isn't normally given but expect bloods will continue to be monitored.

For me fatigue left me long since but I am still with the dreaded itch that occurs at night-time thus interrupting sleep most nights. That is the only sympton I appear to now have. My stools slowly returned to what is considered a normal colour and my LFTs are slowly on the decrease it seems.

Your right side pain could be due to your gynae problem or as you have stated you have a coccyx problem which I think is the bone at the base of the spine. It can be informative with blood tests to query bone health and when I had series after series of blood tests in 2010, one was to check if the problem was liver or bone related but I am sure you have probably had those tests anyway. Could you at all have a hip problem. Altho' I believe that problems with the bones are not part of PBC, PBC can in fact lead to this due to not absorbing certain nutrients with the condition and some like Vit D for eg are needed for bone health.

Maybe whichever specialist informed you you had AMAs then maybe he/she is holding off for now due to the fact that all it needs is to be monitored even tho' myself I'd like straight answers. I know in the US as opposed to England where I am, normally if PBC is suspected then a liver biopsy is the norm there. I didn't have a biopsy due to the fact I had the AMAs present for diagnosis and it didn't seem questionable.

I'd put your questions to your specialist and try to find out outright if you have the definite diagnose of PBC and ask how it is to be proceeded with. I think you will probably go through what I have stated here and just have bloods monitored.

The consultant who I saw never said he thought I had PBC the day he said he'd do the blood test for AMAs it was myself who asked if it was to check for PBC. He said and other conditions as I had the ANA blood test too which proved to be negative. I noticed that when I got all the blood results in print out after diagnosis the day the consultant requested the antibodies test he had put on the top PBC so think he knew.

Hope this has helped and not confused further.

[Clairetopaz in reply to Hidden]

Hi thanks for taking time to reply. I'm in the UK, I'm relying on the NHS to sort this.

I saw my GP today about side pain, he reckons its to do with my coccyx pain.

Is there a special diet I need to consider now I have been told by gastro I have PBC gene.

[Hidden in reply to Clairetopaz]

Well Clairetopaz I wasn't informed I had to stop eating anything when I was diagnosed with PBC Dec 2010. The hospital consultant I saw on my first visit did suspect I had PBC as I found but he didn't inform me that, said he was taking the AMA and also ANA blood test that day.

I did ask him if I should avoid certain foods and he said 'the liver loves calories'. I was never asked after it was discovered I wasn't an alcohol drinker (only the odd social, never home drinker except a few at Christmas, odd birthdays) told to not partake of alcohol but I think it is common sense and I haven't bothered with alcohol since I had my first abnormal LFT early 2010.

I do know that due to bile acting like a detergent on fats and with PBC we can have a bit less circulating the system due to bile duct damage so I would say that it would be wise to try to watch the fat intake but try to note the bad fats as opposed to the good. I have found a lot more about fats since being informed I have PBC. I know prawns for eg are high in cholesterol but did you know they are the good cholesterol. Oats are supposed to be good for regulating cholesterol so I try to have porridge oats for breakfast, the proper stuff that is.

I think at the end of the day what it all means is that we have to try to take a bit more care of what we put into our systems to fuel out bodies. Prior to diagnose I thought I was but I am even that more stringent now. I try not to let PBC rule my life but I do try to have meals at roughly the same time daily as I feel that works better for me.

[Clairetopaz in reply to Hidden]

Hi. AMA??? Is this the mitrochondrial antibodies?? This is what I showed "strongly positive" for.

I don't have the itch that a lot of people talk about, where on the body is the itch and how severe?

Is this a sudden illness that deteriorates quickly? I'm only 37

[Twiny]

Hi Claire I wldnt panic about things at this stage u may not have anything going on as same for me.. Infact my gastro said my dr got it wrong .. It's the alkaline phosphate level that has to be up he says.. It's strange as everyone learns they have it with different readings.. Try and relax until u learn more know that sounds impossible as I struggled myself..

[Clairetopaz in reply to Twiny]

Hi, panic is what I do best! My GP didn't know what positive mitochondrial antibodies meant. The only person to shed light on this blood test result was the gastro team, I waited since February 2013 with this positive blood test on my mind. Now I get told I have a gene that causes PBC, I got told to have blood tests again now, then again in 6months time. This is when I will see gastro again.

Gastro did add...."if you turn yellow,rush to A&E". I must add......that scared the crap out of me

[Twiny in reply to Clairetopaz]

Just wanted to add again seriously the gp's don't know about enough about the ama's etc feel they r panicking u unnecessary .. I have just been through the same event what is ur alp?? That's the alkaline phosphates?

[wendyh in reply to Clairetopaz]

please contact the pbc foundation on 01315566811. Collette and her team are amazing and will help you through the initial scary times. they will also send you a pack with loads of information on lifestyle etc. oh and a regular magazine, you can also go to the web site pbcfoundation.org.uk