Awaiting test results

[donna01]

I was in my doctors office for a routine blood panel and my ALT, AST, ans ALP were elevated. We retested in 6 months and they are a bit higher. I was referred to a Gastro and had 12 viles of blood taken. My GGT is elevated, my Igm and Igg as well. Also M2 is positive. Now have to have an ultrasound as they suspect PBC but I luckily have no symptoms at all. I am wondering if anyone ever had an elevated M2 and was not diagnosed with PBC as this seems to be the main marker of this disease. I'm losing my mind reading about this disease and am terrified.

Thanks for listening!

[Hidden]

Hello donnagree.

If you have been informed PBC is suspected by a doctor due to the blood results it does seem with a positive for the AMA antibodies that it could be probable.

I was never informed by the hospital consultant on my first visit to him Nov 2010 that PBC was suspected even though I had abnormal LFTs - liver function tests - over 7 months of checking during that year due to me presenting to my GP with itching (and at the time fatigue too). The LFTs were slowly rising in that period.

I was asked to go for an ultrasound 4mths after going to my GP and it showed up pretty much normal as you can't tell if one has PBC via this scan, only any visible liver or bile duct damage if the scan is clear enough. I was informed by the hospital doctor that the scan showed clear and he said that he could make out the bile ducts that were appearing clear when i saw him for the first time.

That day at the hospital I had further blood tests, one was for AMA and ANA antibodies. I also had the GGT taken that was abnormal. I was diagnosed on my symptons, abnormal bloods and the AMA. I started urso Dec 2010 and my LFTs have come down reasonably in the last almost 4yrs., the GGT too also. These days I simply itch later in the day which causes tiredness the following day if the itch kept me awake during the night.

I call PBC a condition, don't like to say I've a disease. I stumbled across PBC myself many mths prior to being informed I had this. I never mentioned it to the doctors as with abnormal blood tests and also itching you can ahve other liver-related conditions too.

It can be scary being informed you have PBC but for me it was something I resolved with myself as time passed that I would deal with t hings as and when as opposed to thinking the worst as that might never happen. I was 45 when I started itching and 46 at diagnosis and I am now 50. I've been itching for almost 5yrs and been diagnosed almost 4yrs. I am probably feeling much better now than I was back in 2010. I started to make some lifestyle changes along with my husband and if I didnt' itch I'd not actually know I had PBC. I suppose the only visible sign I do have PBC to a doctor as the ordinary layman wouldn't suspect is that when out in the sun during the warmer months in the UK (I've never been overseas unless we count the Scilly Isles!) my skin does tan but the tan seems to remain with me right through winter and doesn't fade much. Given everyone now goes abroad for hols a lot all times of the year it's probably not something that would be noted now.

You may never develop symptons from having PBC, some don't. With PBC it can sort of suspend and never progress beyond a certain point. It is said to be slow pregressing and for me once diagnosed I did wonder if I'd be here the following year but I got to the year mark and then another and am still here doing well. I have had to accept that having PBC it is something that will never leave me, it will always be with me for life but it may never be the cause of the end of my life. I get out and about and enjoy life as otherwise to me it would be a waste as one day I might not be able to with having PBC.

[donna30]

Hey hun,

I was in exactly the same boat as you a year ago last sep! I totally understand how you must be feeling but you will soon realise that this isnt as scary as you might think. The best place to read up on things is Liver north and the PBC foundation. All the ladies and gents are great on here too. I just went for a routine blood test. That was abnormal then after a few more i was diagnosed with PBC its a shocker at first i went through every emotion possible in the first few weeks.

All my results are high they dipped by almost half after taking urso for 3 months but now there back to where they started but my specialist reckons this is because i am training hard in weights at the gym 6 times a week and changed my diet quite alot so prob just a shock to my body. He told me not to change what i am doing in fact he was very impressed how well i looked and the effort i make with trying to keep fit.

Within a few weeks i changed my life for the better because of this diagnosis its not everyones opinion but i am almost grateful i know i now have it. This is one of the slowest progressing liver diseases and there are many. I think only 5% of pbc patients ever need a liver transplant and there is research being pumped into this disease right left and center. I was diagnosed at 30 i also dont have any symptoms and feel for those who do i met a few at a recent talk. When or if i do get any stmptoms i will deal with it then.

You are more likely to die from old age than die from PBC so keep positive. I know when your first diagnosed its easier said than done but everyone really helped me when i was first diagnosed. Life is way to short to worry. Eat healthy, exercise, live life to the full. I still party enjoy a drink, am out most weekends with the girls but just drink in moderation now.

Please dont worry xxx

[donna01 in reply to donna30]

Peridot and Donna30, thanks for your responses. I sure hope you both are right. I feel like I'm having a nervous breakdown. I cannot even sleep. Can you give me the Liver North website? I cannot seem to find it on google.

[Hidden in reply to donna01]

Hiya again donnagee.

Here is the link for Liver North.

If you click on Publications you can actually read all the back issues of the newsletter. You can also request the dvd on PBC that is sent out free.

livernorth.org.uk/

PS Please try to not to over-stress about it all, know it is a hard thing to do with not knowing exactly at the moment but bellieve me getting all stressed up can actually make you feel a lot worse. I find when I break routines at times I feel lethargic and if I can't sleep due to worry, I feel the itch I experience every day.

[donna01]

Thanks for the info Peridot. I luckily, have no symptoms of this disease thank God.

[Hidden in reply to donna01]

Hello again donnagee.

I sincerely hope that you remain that way.

Due to myself being diagnosed when I had symptons, I do wonder now if I had been daignosed quite by a routine blood check at the the GP surgery in event I went in for some other ailment (I'd not frequented the GP in some time prior to 2010 and my lase medication was antibiotics in 1999), I might have not started to itch when I did perhaps.

But I long since gave up wondering as what is here and now is exactly that and a case of got to deal with things as and when they occur.

If you have the heads up and you do have a PBC diagnosis, it would be advisable to take even better care of yourself than you think you are doing presently, if you have the odd alcoholic drink, though it isn't strictly off-limits, in my opinion none is by far better for the liver. Any over-the-counter meds would be best avoided if possible too.

[Pooche]

Live your life as your body will let you .