I am not entirely sure the terms I have been reading regarding blood results. I have heard about the AMA test but do not exactly know what it actually means. I have seen references to LFT's, ALT and bilirubin but do not have a clue what they are and what I should be taking notice of. I feel really ignorant!
All I do know is that the levels in my blood the last time I was seen were almost normal. But levels of what could they mean? What is good and what is bad? Also I have no idea what 'stage' I am at. How can you tell? Is it when you have certain or more symptoms? I have joint and muscle pain, fatigue, indigestion and for the last month or so I have noticed I wake up several times throughout the night with a very dry mouth, my tongue sticks to the roof of my mouth and gets really sour.
I have seen the consultant on 3 ocassions. I was diagnosed with PBC in Jan 2011. But due to nerves etc and being bombarded with medical terms i do not understand, I have great difficulty in taking in what they say. My sister has accompanied me on the last 2 ocassions so she can listen to what is being said. I get myself in a proper state, I can't say anything and end up not really hearing what I am being told or asked. I find it all a bit scary and it gets a bit too much for me...Silly I know, but I find it all really strange and can't get my head around having something seriously wrong with me.
I hope I am not the only stupid one!!
Regards
Written by
mumofthree
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You are not stupid at all. Its a learning curve for all of us, even the dr`s and the specialists.
You are doing the right thing by taking someone with you to your appointments, our heads seem to be all over the place and its difficult to remember things.
I would suggest to write down any things you want to ask and take the list in with you then you wont forget when they start talking.
A lot of info can be got from the PBC foundation and on the internet and talking to others on here and similar sites.
Also I have asked my consultant to copy me into the letters he sends to my GP so I have them to read and keep up to date with whats what and its helpful to remember what happened at your appointment.
Staging is done by taking biopsys of the liver, but as it only stages the small pieces taken and not the whole liver it is not always accurate and isnt actually done on everyone. Whatever the stage treatment is the same (Urso)
I have heard a few people say that the symptoms are worse in the first stages and are a lot better by the latter stages.
All we can do is learn from each other and help support each other and its great to be able to talk to others that actually understand.
Its only recently that I have found this part of the PBC Foundation site and had any sort of communication with like people. Yes I am a member. I am not very good on the old internet thing and get to things by chance normally not by judgement! Thanks for the link zipitydoo, I will definately check that one out.
When I was first informed by the gastro registrar that I had this condition called PBC ...now considering I went to the appointment thinking this was all a big mistake and a waste of time because..'I have not got anything wrong with my stomach'.. as far as I was aware I was having checks by a rheumatologist for possible rheumatoid arthritus and thought naively my reports had been sent to the wrong department. I wasn't at all prepared for what I was about to hear. I was on my own when I saw the registrar and when he told me I had PBC and that I needed to have a liver biopsy to confirm. I was so taken aback I really didn't know what to say. I asked him what did that mean and he handed me the PBC Foundation GP leaflet because that was the only one he had, and said read that. I stupidly asked what does that mean for me and whats the worst case scenario...and was told I may have 3 years to live!! That was all I heard.... after that all I could think of was not seeing my 12 year old grow up. I was totally devistated!!
It took me weeks/months even, to bring myself to read the leaflet let alone go on the internet. My sister did read the leaflet and a did a bit of research for me but I had this '3 years' in my head and couldn't shake myself out of it. I didn't want to speak to anyone or read anything about it...I still don't find that too easy now 18/19 months on.
After I had the biopsy my sister accompanied me to my follow up appointment. I saw the consultant that time, my sister explained how frightened I was after being given the 'news' by the registrar. He did put my mind at rest somewhat. He said that was not exactly the case and that by taking urso it should prevent it getting worse. He also mentioned he had a few other patients who had had PBC for a number of years and were ok. I don't know if he was just telling me that because it was what I needed to hear, but it did snap me out of my desperate state at the time.
The only one I do speak to about it is my sister but you can only say so much. I did mention it to a couple of close work colleagues once but they automatically came to the conclusion that I must have a drink problem..which I do not, so rather than have that sort of reaction again, I rather not tell anyone. Thats why finding this section of the foundation has been so helpfulI to me...I am still trying to navigate my way around it so havent found everything yet...gosh thats impressive I am even using computer jargon..musn't get too excited though! I don't think I have opened up to so many people in all my life about anything really. But as you say zipitydoo, speaking to others that understand exactly where your coming from certainly helps. You are not made to feel as if you are moaning unecessarily all the time because outwardly you do not appear to be ill. Oh gosh, I hope I am not coming across as a moaner!! I still can't bring myself to speak to someone face to face yet or on the phone but surprisingly to me I am managing to communicate in this faceless way!
Thank you so much itchyandscratchy for being so informative about all of the terms. I did not realise you could actually request personal copies of the Dr's letters or blood results. I will definately ask for them in the future.
They were totally wrong to say you have 3 years left.
On another site I have heard from people that were diagnosed over 20 years ago with PBC and are still enjoying life.
The truth is they dont know and everyone is different. It does make it very frustrating though as you want to ask all those sorts of questions and they dont have the answers. Hopefully with the reasearch that is going on they might have answers for us one day.
A lot of us suffer with the symptoms you mentioned and a lot of us have other auto immune stuff going on aswell. Please mention all your symptoms to your GP. That way they can check whether it is the PBC that is causing them or whether its something else that can be treated.
My aches and pains were put down to fibromyalgia, my indigestion and acid reflux was looked into and they found a hiatus hernia, the lack of sleep was also put down to the fibro and dry eyes and mouth down to sjogrens. So now I have pills and sprays to help with them.
This site is great because we can share with others who understand and in quite a few cases are going what we are going through at the moment. For one instance I put that on awakening I was experiencing like a tremor in my body like perhaps there was a slight earthquake happening. I then got replies that others had noticed this aswell but had never told anyone as it seemed strange. The fact it happened to others made us feel less like we were going mad.
are you a member of the foundation? they offer so much info without any of the intimidating jargon.
I'm no expert but i think roughly you LFT's are your liver function readings that are taken when they test your blood,
Alanine transaminase (ALT) is commonly elevated when you have PBC its and enzyme and its reading shows not how much damage but how much inflammation there is. the range for normal reading I think varies slightly from lab to lab but i think it should be under 50.
Then there is another enzyme known as Aspartate transaminase (AST) again varying from lab to lab but i think it should also be under 50 but this one isnt just a reading that is associated to the liver it is also connected to muscle and i think heart and bone so not specific to liver injury
Alkaline phosphatase (ALP) is a third enzyme more related to biliary problems and i think should be under 120 ish
The thing I didnt know was how high is high with regards to levels, my ALT has risen to 800's+ and i now know that thats flipping high!! it has usually sat at around the 200+ mark and that has been the "norm" for me but still too high, the urso should bring the LFT levels down to more normal readings (not in my case)
Bilirubin is the one that a PBC sufferers needs to watch as this goes up as the disease progresses and i believe this is the one that is most watched by our docs. its found in bile and urine (its what makes PBC sufferers urine look that horrible dark colour) and its what cause us jaundice
i hope that helps, its not easy getting your head around it all, please try talking with the pBC foundation, they have a wealth of info.
your dry mouth sounds a quite like the symptoms of sjogrens disease which is common in PBC people, its usually more of an unpleasant irritation than anything else, it effects your moisturizing glands effecting things like eyes, mouth, nose and vagina. It can be easily diagnosed with simple painless tests where they measure the amount of saliva/tears you produce and its then managed with drops/lubrication, so worth mentioning to your doc to just make life more comfortable.
I hope some of this helps. as with the bloods, my doc suggested i had a copy for myself and plot new readings on there i also take it with me when i see the consultant. hope some of this helps,
easier said than done but try not to get too hung up on the readings and counts it will only worry the pants off you. xx
Oh my goodness....it hadn't occurred to me that my newly diagnosed Sjrogens could affect parts besides mouth and eyes! That explains so much! Ha! Okay, so why do our joints ache? Karen in CA
Hello.
When I switched GPs Feb 2011 one of the GPs I had to see on registering as I was then on repeat prescriptions for the urso, he kindly went thru the blood readings whilst I was there when I asked for a print-out.
Basically the LFTs are bloods taken to gauge how your liver seems to be functioning as the abbreviation states. One of them (forgive me now but I can't recall which abbrevs are for what unless I really check), that is for liver inflammation, another regards enzymes present in the liver. There's also what goes on mine as GGT, gamma something or other that is carried out for patients with PBC (and I expect other liver disorders).
The bone is normally checked as well as kidneys.
The AMA means anti-mitochondria antibodies, the mitochondria cells being energy cells. Hence my theory previously on here that may be why we lack energy and get fatigued?
I did read symptons that patients can have with PBC but at present I've only got the itch, I ignore the tiredeness and fatigue part presently as can handle that one, the itch is damn right annoying and at times troublesome at night.
As itchyandscratchy states, labs vary with readings but if you receive print-out, it should state what is considered a normal range with variants.
I know with regards to a mention of dark urine, I did read that. I have to say mine has always been considered normal as yet and also you can have pale straw-like stools. I did used to have paler stools prior to taking urso but I did read somewhere that they can be paler due to lack of bile that is excreted that way so figures.
I too feel exactly like you do. I was told I have pbc/aih, but i would have to have a biopsy to confirm this. I had the biopsy on thursday, really didn't want to go through with it, but spoke to my really good gp who said that i should go and have it done so that i could get the right diagnosis. I see my gastro doc in 2 weeks and i'm really scared, mainly because I really don't know or understand whats up with me. I know that i have problems with my liver, bile ducts and i'm itchy, hurting and tired, but I don't understand all the 'what seems like gobbledegook' to me. I really hope to understand it all, but i would rather the gastro doc explain it to me than all that stuff on the internet we have to wade through, its really not fair. But I think I will still be thinking this way in years to come by the sound of what I've read from others on this site.
What can I say? Its encouraging to know from reading some of the replies, that we are really not alone in our feelings. Its basically a grieving process, wanting your old self back before you were told you had this condition. Its all so fresh for you.. so nothing anyone can say at this moment in time will make you feel any different on the day you go and see your Gastro specialist . You will feel scared, its the fear of the unknown. Utter confusion, frustration. Why is it happening to me? Could I have done anything differently? BUT this is going to be a natural feeling for you which everyone of us has also gone through.. to one extent or another. There's no need to feel guilt for how you are feeling or anything else, you have done nothing wrong...its this BLEEP of a disease which no one knows for certain how we get it.
Please, please take someone with you for support. Write down as you think of them, everything that you are suffering with, you may not think they are important.. but they could be a symptom or side effect of one or both of the conditions they believe you have. Also write down any questions you want answered..I would not suggest you do it on the morning of your appointment. It could be something you think of while having tea, watching TV or even when soaking in the bath. I keep a note book by the side of the bed.. Most nights I have difficulty sleeping - sometimes it just helps to write down exactly how your feeling at that time..any worries/concerns that are going around in your head... This does help me.. just getting it out of my head and down on paper seems to give me a release - so to speak - and just wander off into nod land...eventually.
I've also started to write down PBC/bloods terms, tips etc as I have come across them.. provided by our other like sufferers, as a result of my own and others questions. Thanks everyone!!
As others have also suggested.. don't forget to ask to be copied into any letters to your GP and ask for copies of your blood/biopsy results..probably like me you won't have a clue what they mean at the moment but over time will get a better understanding.. You seem to have a good relationship with your GP maybe he/she could help you understand a little better, after all you are likely to see your GP more frequently than you Gastro consultant.
You will eventually start feeling a little more comfortable in your own skin and not so pessimistic about the future. I am 19 months down the line and mentally it has become a little easier - I won't kid you and say I am mentally strong every minute of every day but I feel I am able to make plans for the future.
Good luck and best wishes for your appointment with the Gastro in two weeks, you'll be in my thoughts. Please let me know how you get on or even message me if you just want to sound off and vent your feelings.
Hi again mumofthree are you in the uk? When I was first diagnosed in 2002 I really panicked too and like the curious logical minded person I am went on the internet and the main thing that stuck out was that I was only expected to live 15yrs before needing a transplant which had me in bits as at the time I was a single parent to my then 4yr old daughter! But thankfully was soon reassured when I went privately ( as could not wait months!) to a fantastic hepatologist who reassured me he had patients in their 70's and 80' with PBC who never needed a transplant and had lived relatively normal lives which really calmed me down! So fear not and now u have all us to help u too/1 I echo what others say also write down all questions b4 your liver appointments and do bring someone with u until you feel ready to go alone. Also do ask for copies of your test results from dr and liver clinic all patients have rights to this info about them. Keep well and try not to worry, not easy i know.Bfn.
I am in the UK, Wales. Are you in the UK? Thank you so much for your advise and kind words of support.
It does not help that no one can really come up with the answer as to what causes this horrible condition or why we are the unlucky ones who have it.
The internet can be such a frightening place!! You find out things you want to know..but then wish you didn't!! Its frightening for everyone when you first find out you have PBC.. but when you have young children its a very different ball game. You do not only question your own vulnerability but as a parent how can you plan ahead for their future!
It is so encouraging to know that there are so many people out there who genuinely want to help with their kind words and support. It really DOES make a difference.
Thank you once again and the very best of wishes to you.
Hi MO3( have gotten used to shorthanding via texts hope u dont mind the abbrevation u can call me LM!) I am from N.Ireland. U r very welcome for advice and support this site is my Godsend at mo. I no am not alone which really does help talking with people who truly understand how i feel not just nodding or making facial expressions as if they understand albeit their sympathy may be real. Its very difficult trying to just get through the day with the fatigue but even more difficult if you have young children to look after who really cant possibly understand what's up with mum and y she doesn't have the energy to go at the pace they want or need you to go(i.e. if say you take them out for a bike ride and your walking!). Like you I have one young child wee boy of 5 and a 16yr old girl, not the greatest combination (i.e. a toddler and a teenager!)Best advice on that particular issue is try to enlist a good family member or friend or if u can afford it a childminder (who minds children in her home) to take kids for just maybe 2-3hrs a day so u can just rest and i mean rest not take into housework! That way you feel better, more energised and can be a better mum to them keeping all happy. Someone once said a happy mummy is a happy home and as I have been having a rotten time recently really understand fully what this means now.
Hi LM, I don't mind the abbreviation at all. I wish I could have thought of a shorter name when I registered on the site. Boring I know but it was the only thing I could think of at the time - looking at a photo on the mantlepiece of my 3 handsome boys.
I won't even attempt to abbreviate on here not to embarrass myself - never know what I'll end up saying!! I thought I was being really hip and trendy one day when I was texting my youngest - cutting out the vowels etc and signed off LOL - I thought it meant Lots Of Love - until he put me straight telling me I should stick to 'oldy speak' as he puts it. I still do it on times though just to wind him up!
I had a big age gap between mine children too. My two oldest are 25 and 23, both have left home now and living with their girlfriends. Both live close by though - one 10 doors away and the other 5minutes walk. I speak to them everyday and everyone comes home on a sunday for a roast lunch. My youngest is 13 - he can be a little 'Kevin and Perry' on times - bit moody - but mostly he's as good as gold and understands when I have to go and have a lie down for a little while - not so easy though with a little one like your 5 year old!... My middle boy and his girlfriend are really good though they have him over to stay most weekends for at least one day/night. It helps me alot coz I work every thurs/friday and can feel quite exhausted friday night and saturday. He gets on well with my eldest too but he is closest to his other brother.
Like you I find this site a godsend. It's so comforting just to have a little chat - as you say with others who understand just how your feeling - it helps to raise the spirit when you've had a rotten day.
Thanks MO3 read the first blog from EASJ (cant remember rest of this persons site name! I new i should have written it down! I only learnt to do that last nite I am very new to this whole chatting online thing but just to say it really lifted my spirits advise u and all others on the site specially newly diagnosed pbc folk to check it out, which reminds me most attempt one myself maybe now when my thoughtful sister-in- law has taken the wee man away for few hours. Oh heaven! Take care bfn
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