What am I dealing with here? Pbc ?

I am 27 and just had t 3rd baby.

I was having some diarrhea in February and the dr tested my lft as I have 1 large gallstone and she thought this was the problem. I wnt to see a surgeon and he agreed.

I wanted to get a 2nd opinion so I was sent to a specialist. He was sure it wasn't y gallbladder as the ultrasound came back clear, though after he repeated my

Bloods I still had elevated ggt and alkaline phosphate. He told me to wait 4 weeks and we would repeat bloods.

So I have just got the results and m ggt alkaline phosphate alt(?) and ast are all elevated. M

The specialist mentioned pbc and has sent me for a blood test for AMA and Ana.

I am beside myself crying, I can't sleep and am not hungry.

I am so nervous.

Ate my latest a results typical of pbc? The specialist didn't go into detail Nd I didn't ask much as it wasn't untill I got home and researched it that I found out how serious this is

Please give me some

Advice I'm a nervous wreck atm

12 Replies

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  • EDIT; just to add my WBC have always come back normal

  • Morning Blossompossum,

    Try not to panic to much, I was diognoised at 24, and 9 years on I am still the same. I understand it is easy said then done, and like u I was told to read up about it which when I did I thought my life was over.

    They can give u Urso to slow the condition down, and now they know more more about PBC, patients die with it not because of it.

    Lots of others on this site have had the condition for a long time.

    Keep us informed when ur results come back and any other questions u have share with us, we are all here to help.

    I wish u well xxx

  • Hi Blossompossum

    we always feel nervous when we are dealing with uncertainty but you will feel calmer soon. Have been there when first diagnosed - now looking back wished I'd saved my energy and sleepless nights for other things. Try not to over analyse the situation and the internet is not representative of the reality.

    Two years on my stamina is even stronger than it was two years ago,life continues as normal, and psychologically am a more positive and happier person now.

    You will be fine, the condition (should, you have PBC) will be manageable. You will feel happier soon so be kind to yourself and try to treat yourself to something nice today. Keep in touch with us.

  • Thank you both for the replies. I just rushed down to the dr as the said they had both my bloods back (AMA and ana). Though only the ana was back and that was negative, so I am still waiting on the results from the AMA.

    Does anyone know if being negative for the ana is a good sign that what I have is not pbc?

    My specialist just has no idea what else could be causing these abnormal lft. He has ruled our all viruses ibd etc.

    Another good thing is that my WBC is normal

    Just trying to stay positive.

    Thanks guys :)

  • Hello Blossompossum.

    I was informed by the hospital consultant back in Oct 2010 when I had my first visit that the AMA blood test will 'take a bit of time' as it's a more specialised one.

    Although mine was back earlier with results - both the ANA and the AMA (I tested negative for ANA, positive for AMA) - looking at the letter the hospital consultant sent to my GP and then waiting around for the GP to read it and action, it was 2mths before I was given the diagnose via the GP of PBC. Then he had marked the letter to reception for whomever was to ring me up to ask me to go in for meds that it was basically routine! I got a call and had I not been informed I was to be given meds and managed to get the name from the caller I'd not have known. Once I heard ursodeoxycholic acid I could say but the caller couldn't, I didn't want an appt for the following week, 5 days later with a weekend in-between, I wanted to find out from the GP that day. (My husband was a bit disgusted and rang the surgery back when he came from work and we were 'found' an appt though I cannot say the GP who informed me was overly-professional.)

    ANA is normally a sign that one has AIH (auto-immuine hepatitis) that I know several contributors on the site have. I've just got PBC that I know of and that is what I'm being treated for.

    On the white blood cell count score, mine is always a point or two below the normal range but that can apparently be normal in patients with a multitude of various disorders.

    I'm just wondering if you abnormal LFTs could be due to the recent birth of your baby but I'm not a medic so I can't say. Expect you'll probably have further LFTs to keep a check but until the AMA returns back, I don't think you'll know what is the next course of action but take note from me and plenty of others also, PBC is apparently slow progressive if you do have it and the timescale for waiting isn't really that long.

    If you are feeling pretty good in yourself as in healthwise at present, I'd try to just get on as hard as it can be and wrap yourself up in your new baby and other children to give a distraction.

    A thought, I wonder if you mentioning you have a gallstone anything to do with abnormal LFTs. I can't answer that one but you might want to ask after the AMA returns.

    Hang in there.

  • Thank Peridot,

    At first my only my ggt and alkaline phosphate was elevated (at 237 and 224), during that time I was referred to a surgeon as it was suspected that it was my gallbladder even though I have had 1 large gallstone 17mm for 7 years and never had an attack or pain what so ever.

    The surgeon was sure it was my gallbladder so sent me for an updates u/s and more blood tests, when the u/s came back with everything perfect (nothing blocking my bile duct, liver and spleen were all fine) and my blood tests also had raised alt (63) and ast (33). Then the surgeon said "looking at the new blood tests I don't think it is an issue with the gallbladder" and referred me to a specialist whom has now tested me for the ANA and AMA after all virus tests have come back negative.

    The specialised mentioned the PBC and said he didn't know what else could be causing the problem.

    He would like me to go and have my gallbladder removed anyway as I would like to have a 4th baby (will not be if PBC comes back pos) and he would like a liver biopsy (eeeeek!!!!).

    I am hesitant to do this as I am petrified of anaesthetic, I had an ectopic pregnancy early last year that resulted in the removal of my left fallopian tube and sice then I am just scared if I get put to sleep that I probably wont ever wake up again..

    Im just so nervous and stressed, im 27 with 3 beautiful kids, I manage my own business aswell as my Husbands and I just don't have time for this.. I cant die in 15 years I will only be 42!!!!

    Sorry for the essay ;)

  • Hi Blossumpossum

    Congratulations on your new arrival. Your reaction to this possible diagnosis is only natural but try not to stress too much. You may not even have PBC. I so wish Dr's wouldn't suggest that you 'may' have conditions like this before knowing for definite because when you read up on them.... which obviously you are going to do, it can be quite a shock and cause so much unnecessary anxiety. You can do without all this added worry so soon after having a baby which can be stressful enough on its own.

    10 weeks after I had my third baby (coincidence) I started to have severe joint pains in my hands, arms, feet and legs and was told by a GP I probably had viral arthritis and was referred to a specialist. By the time I actually got to see the Rheumatology Specialist 3 years had gone by, my symptoms hadn't changed, I had learned to adapt and cope with them. I was told I did not have arthritis, they did not know what was causing it either but still thought it was ok to discharge me and send me on my way with no answers. Lost all faith in the medical profession at that time!! I was diagnosed with PBC 7 years later...my baby was then nearly 10... I am convinced rightly or wrongly that I had probably had PBC all that time. The Gastro Specialist said he cannot be certain if this was the case but could not rule it out. I have since been diagnosed with osteoporosis of the spine and osteoarthritis in hands and feet. I am 53 now and in pain all the time but over the years I have just got used to it and most of the time try to manage without pain killers etc. but sometimes I get what I call flare ups when the joint, muscle and bone pains becomes unbearable and have no choice but to take strong pain killers. I also have fatigue which can be problematic at times but as long as I have sufficient rest can cope with. Going back to 10 weeks after I had my baby, the tiredness I had then could very well have been down to PBC but who knows, I just put it down to the normal tiredness from all the night feeds etc. and being 38!!

    I am not suggesting you may have the same outcome but if it does turns out you do have PBC then it can be managed and as others have said its not a death sentence anymore. My consultant told me that with just a few adjustments there was no reason why I shouldn't go on to lead as normal a life as the next person and have a normal life expectancy.

    As for maybe having to have a liver biopsy don't stress, its really not that bad its all done under local anaesthetic so your not put to sleep.

    You mention you would like a 4th baby...your a braver person than me 3 was enough....but anyway I am sure I read on here somewhere that someone had had another baby after they had been diagnosed with PBC and everything was fine....so if it does turns out you have PBC you never know you may well be making another visit to that delivery suite!!

    Good luck and best wishes for the future, be happy and give that baby and your other two lots and lots of hugs and kisses.

    PS you thought yours was an essay!!!

  • BlossumPossum, Even if your test come back and your AMA is positive and tests lead to you having PBC, you will more than likely have a very long life. My first elevation on the GGT and ALK was in 93. By 97 a biopsy was performed and the Dr. couldn't state what it was, only maybe early stages of a disease

    . By 2003, another biopsy was performed and results sent to the Mayo clinic and I finally had my diagnosis of PBC stage 2, AMA negative, and ANA negative. A small percent of us have PBC even without these elevations. My numbers are better now, than in 2003 and I contribute this to taking the ursodiol, which has been 10yrs, I've been on it. I pray you do well, as I do for us all. Congratulations on the new baby!

    Magnolia

  • hi blossumpossum.my ggt was elevated for 8 years before a new doc decided to check up on it.finally after scaring me to death with possible pancreatic cancer theyve decided its pbc.i hope yours turns out to be nothing more than elevated hormones from giving birth- congratulations by the way.but if it isnt youl be around for a long time.read the forum itl ease your mind and if it is then you can get great support anytime night or day from people on here.try not to worry and focus on your lovely family.eat a low fat diet and enjoy life.its not a death sentence anymore.x

  • I am 39 and have been through same thing, all started with gall stones last summer. Had gall bladder out and liver biopsy in December after consultant confirmed positive AMA in September. Cant deny the shock was pretty bad and I felt all the same things as you and went into panic stations. Looking back there was no need for my reaction I am still here, with my family and kids I have a normal life just get extreme tiredness occasionally which is horrible but not impossile to cope with. If you have PBC you will come to terms with it like all of us so stop worrying and take it easy its not worth the stress.

  • Thanks everyone for your replies!

    I had my AMA test done on Friday and am calling the specialist first thing tomorrow morning.

    I was just wondering how everyone found out about their PBC, was it through blood tests or ultrasound?

    I am so nervous I havnt been sleeping well and am really scared..

  • Just thought I would report back, I got my results this morning and AMA test was negative.. Hoooraaay! now im off to get my gallbladder removed and a liver biopsy aswell as some dye through my bile ducts..?

    I just wanted to thankyou all for your support. This is such great little forum and put my mind at ease over the last odd week.

    Wishing you all health and happiness

    Thanks again xxx

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