My test results
Docter did not prescribe urso or anything.
Said nothing would help.
He is a liver specialist.
What do you think of results
proteins,total serum 7.6
Albumin serum 5.1
Billirubin total 1.2
Billirubin direct 0.25
Alkaline phosphatase,s 87
Ast 23
Alt 17
bilirubin,toatal/direct 0.95(High)
mitochondrial *m2) antibody 26.7 high
GGt 17
Ceruloplasmin 29.9
Copper,serum 124
Immunogglobulin m qn serum 115
Alpha 1 antitrypsin serum 124
Hello again luisv187.
I've not got my LFTs about at the moment but I have them all from 2010 the year of diagnosis up to present.
At a glance I know some look normal.
If you check back on my postings, I did reply to someone about my LFTs and I put some of the results on.
Now on my blood results each time there is a bracketed area at the end of the readings and they do give you a scale what is considered normal range. If they are on yours then you will see what yours are exactly.
I had what was considered ' a high titre' of the antibodies, the AMAs (anti-mitochondria antibodies) present to give my diagnosis but got mine due to itching (pruritis) and also at the time I was fatigued (that vanished at some point during 2011). I also had abnormal LFTs and abnormal GGT. At a glance your GGT looks quite normal, mine is abnormal. If I can see mine on the mentioned posting on here I'll copy otherwise and edit to this posting or I'll re-post later on.
Hi! Post the normal ramges that appear in your results because each lab uses different standards for testing...
Hi,
I just posted a long reply ... but I don't know if this site times us out if we take too long - had an important phone call in the middle - but it just would not post, and then I lost it all!! So annoying.
The gist was, as Mcsv says, you need to post the 'Normal range' (in brackets) for each test alongside your result, and the 'units' that they use, as these can all vary:
eg my lab does ALP as measured as: U/L; but the PBC booklet (I think, it's that) does it as: iu/L. It can make a huge difference.
Also, as I'm not sure if I could 'translate' if your readings are different units to mine, so it might be best to tell the experts, such as the PBC foundation people. I realise a phone call from the States could be seriously expensive, so you can email them. Or, why not check if there are any US PBC groups? You could ask Notor, she replied to your last post, on here, yesterday - I'm sure she's in the States.
I hope you get some answers soon, and remember: look after yourself, and enjoy life!
Hi luisv187, yes i would advise you to email the PBC Foundation. You can join as a member and if you have any queries at all, email and ask the information you require. They have some of the best consultants who specialise in liver conditions who will give you the correct information and advice. pbcfoundation.org.uk
Hi Posh,
You just replied to me, not luisv187.
I suggest answering her via the large 'reply' box just underneath her initial post. As it's over a week now, she may not be checking back to this thread any more, so she needs an email that goes straight to her.
Cheers,
Grittyreads.
I concur that you must also post the normal ranges. but my preliminary opinions are:
1 urso helps with pbc. if you have pbc, you should be on it. why the doc would say "nothing helps" is beyond me.
2 these results look normal except that ama is positive and direct bilirubin is LOW. based on these, and without a biopsy, you don't meet the clinical criteria for pbc.
Thats what the docter said, he said he hasnt seen a case of pbc that' acts like mine? He said thr numbers dont match. So im wonderimng what really is going on.
Agree with others re what are normal lab results for your lab. Sounds as if you need liver biopsy.
I wish my numbers looked like yours! They are really good. The whole point of URSO is to slow the disease so Im' not sure why he hasn't put you on it if you have PBC.
Callye
luisv187, do you, or do you not have a PBC diagnosis?
Well yes through blood work with positive ama. No biopsy yes
In order to have PBC you must have elevated LFT's with a positive AMA. AMA does not give diagnosis of PBC alone. All your LFT's were normal as well as a normal GGT. Looks like an autoimmune disorder to me, not PBC. I am not a doctor but I am an RN and know lab values. I hope this helped. Good luck
What other autoimmune disorder is there like this?
PBC is an autoimmune disorder.
No biopsy yet i mean
If your specialist thinks you have pbc, I do not understand no treatment with Ursodiol.
Hi Luisv187,
There is a big difference between those who have been told
a) you definitely have PBC but it's in the early stages with few symptoms
b) you have PBC but are asymptomatic ie no physical symptoms
c) you have positive AMA but no symptoms and no abnormal LFT's therefore you do not have PBC.
I come into the last category.
In the UK they do not think about giving URSO unless you have a firm diagnosis of PBC and they do not necessarily give URSO if you are PBC asymptomatic. Despite many people thinking that everyone with a diagnosis of PBC should automatically be given URSO, it doesn't happen here and quite possibly that applies to the US as well. Some doctors over here do not prescribe URSO for a PBC asymptomatic diagnosis. In the UK they do not do a biopsy unless it is strongly advisable.
It sounds as if your doctors think you are in maybe one of the 3 categories above. Ask your doctors to make it clearer for you. As Kevin733 said, you need to be clear whether you do or do not have a PBC diagnosis, or if it is something that might possibly develop in the future (which applies to me).
In many cases it is a very slowly-progressing condition and some live with it (and some with no symptoms) for years and years. My consultant told me I had more chance of dying with it than because of it.
I hope you get your bone pain and twitching sorted and if you can, try to keep worry and stress to the minimum as it can just makes things worse - Google can make stress worse!
Hi Badpiglet,
I live in the U.S. and tested for AMA, ALT/AST, ALK Phos and GGT. I refused the biopsy however because I am asymptomatic but they still prescribed me without hesitation or any questions asked. My gastro states that if you have elevated levels of the above metioned, it is 95% indicative of PBC. A confirmed diagnosis can include a biopsy, yes; but these elevated blood levels and AMA are enough to give us Urso here in the U.S
Hi Donna,
Yes, but the grey area, at least in the UK, is if you have positive AMA M2 but your LFT's and symptoms are normal.
There is concern in some areas that the current UK GP guidlelines mean that some people that possibly could be started on URSO, are not. But that means trying to pinpoint the ones that will more probably go on to develop PBC as opposed to those that probably won't. No doubt the UK GP guidelines may be reviewed in the future but whether anything will change or not - who knows.....!
But she said if i have positive ama not abnormal lft i dont have pbc? Is this true?
I don't know the answer to your question luisv187. I do know it is a good thing you don't have abnormal lft's so perhaps they will just keep checking your lft's every 6 months to be certain they don't go up? Did they mention that? That is what happened to me after gallbladder removal. LFT'S kept creeping up.
Hi luisv187,
The truth is, no one can answer your question. It's an awkward situation, and even the consultants don't agree, much less GPs, many of whom may never have seen anyone with PBC.
Maybe I should have said all this at the beginning, but I felt I/we needed to know much more about your exact situation. As I said, PBC is so variable that it is maybe wrong of any of us to assume from limited information that a 'questioner's' PBC is exactly like ours.
This is also one of the situations I was referring to in an earlier post to you, where I said about different GPs and consultants having completely different responses to the same sets of circumstances in a 'potential' PBC person.
I have tested +ve for AMAs for over 23 years now, but have always had 'perfect' liver function tests, and I have no symptoms of PBC. I have explained my 'history' at length in several previous posts on here... Briefly: I was found to have AMAs via a chance test, 23 years ago. Saw 2 consultants, but all tests, physical examns and scans were 'perfect'. However, they cannot tell if something might develop, so I had annual 'bloods' - I was never told about PBC (this was pre-internet, so never looked any thing up and trusted my GP) but was told I had nothing - no diagnosis - and nothing to declare to insurance etc. but that they had to keep an eye on it. After about 14 years or more of tests I was told to stop having the annual 'lfts', as nothing 'sinister' would develop after all that time.
Then about 8 years ago a new-to-me GP, in a new area, panicked at my mention of AMAs, had me tested, said I had PBC - without any explanation (I went home, Googled and nearly died of fright: worst Xmas of my life) - and was sent to a new consultant. Again, all tests, scans, examns etc perfectly clear, and he talked as if I didn't have anything. But when his letter eventually arrived, he had diagnosed me as 'pre-symptomatic PBC'. I barely noticed that at first, but when I did, queried it with a different GP in my practice. They said it wasn't an official diagnosis, and that some people just had the antibodies, and nothing ever developed, and not to worry, just keep having the annual tests 'in case'. I only got ratty, later, when my usual Travel Insurance would not cover me at all, because of the PBC mention. Things have eased a little with Trv Ins since then, but I began to try to found out more and more, until I eventually came across the PBC F and Collette the founder, talked me out of my 'limbo' panic.
Since then I have discovered several people on here who are also AMA only, yet we all have slightly different stories to tell, some are diagnosed with PBC, some have an odd diagnosis like mine, and some like badpiglet have been categorically told that they do not have PBC - it seems to be an area of confusion and even, maybe, of disagreement among consultants.
I am waiting for a consultation with one of the UK's leading PBC consultants, who I hope will overturn my 'diagnosis'. However, I believe that the PBC F stance on this is that the presence of AMAs is a strong indicator of PBC, and that it is best to receive urso - I could be wrong, but I think that's what Robert suggested to Keren in an online discussion a few months back - her consultant disagrees. You could look back to her posts, as well as mine and badpiglet's.
I was told that - strictly - according to official liver diagnosis guidelines both in the UK and the States, there have to be 2 out of 3 criteria satisfied before a patient can be formally diagnosed with PBC: That is:
1) test +ve for AMAs, and / or:
2) have abnormal lfts for 6 months or more; and/or:
3) have a liver biopsy that shows bile duct damage consistent with PBC.
As you have, 1) , but 2) is inconclusive, then I guess the biopsy is being done to confirm whether it is PBC or not, and it would seem they don't want to give you urso until they are certain if it is PBC. I imagine your symptoms have contributed to their decision to do a biopsy. I think biopsies are done less often in the UK, which may be why people are put straight onto urso in some cases. While you may be worried at the prospect of the biopsy, it is good in that at least you will know. And honestly, for the majority of people PBC is nowhere near as unpleasant as it used to be before the development of urso. As people have said elsewhere, you are more likely to die with it than of it.
Sorry this is so long: one last thing.
Although AMAs are strongly indicative of PBC, there are far more people who have AMAs than those who then go on to develop PBC.
The oft-quoted mantra about '95% of people who have PBC have AMAs' is true, but it is misleading. It just means that 5% of people with PBC do not have AMAs. It does not mean the same as '95% of people with AMAs have got PBC'. Statistics from blood donors show that about 0.5% of the population have AMAs (about 320,000 in the UK), but only 1 in a 1000, (about 64,000 in the UK) develop PBC. The downside is that people who are found to have AMAs have to be tested regularly, as they may develop PBC, and it seems a lot of people in the UK are automatically assumed to be PBC, especially if there are any symptoms, and are put on Urso.
I hope this helps settle some of your worries. Sorry it's so long, but - as you see - it's not straightforward, and I wanted to be more certain of your situation before I said more. My situation (and that of others like badpiglet) is odd, and sometimes I find it a little awkward to be spouting about my circumstances on here, when so many people have full PBC, and my 'limbo' worries must seem trivial by comparison.
Take care, I hope the biopsy goes okay, and please keep us all informed. Above all , remember what I said about treating yourself and de-stressing. Plus the diet, exercise, no/less alcohol suggestions are all good, PBC or not.
Gritty xx
Hi lusiv187,
I just tried to send you a long and detailed reply to your above commant, but I see it's come out as being under Donna01' s reply to you. This means she will get an email alert, not you.
Hopefully you should get an alert to this message, as a tip off to come on here and look at the long reply below.
Sorry - I hate that aspect of this site, I was sure I'd been careful.
Gritty x
Hi Luisv187,
It's not necessarily true for you because you have to go on what your doctors have told you.
When I said 'you' it was meant in a general sense and not personally. (teach me to be more careful with wording!)
My consultant has told me that despite positive AMA results, because I don't have any symptoms and my LFT's are normal, I don't have PBC. That is my diagnosis and is based on my health, not yours. There may be some different doctors that might given me a diagnosis 'asymptomatic PBC', but I have to go one what my doctor told me.
All we can do on this forum is chat about our own circumstances in a very general way, it is impossible for anyone to know each other's full medical history. Most of us have complications of additional medical conditions. It may be interesting and enlightening to hear about others in similar circumstances and sometimes it may help us when talking to our doctors so we can ask better questions (or even ask for second opinions).
Hi Luisv187,
I've sent you a long reply in response to your comments about badpiglet's message. I've tried twice to link it to you latest post, which would mean you would get an email alert, but both times it has attached my post to Donna01's reply to you.
I hope you get this or I will be having words with the site technicians/organisers.
Gritty xx
Thank you so.much to everyone who replied, helps so much to have a group like this,appreciate and will keep updating if i have more info. As for now just positive ama and slightly elevated billirubin. All other test normal. Thank you.
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