Test results

[LindyRich]

Could anyone tell me if there is a website which explains liver test results in layman's  terms. I have just got a letter from the hospital and it may as well be in Chinese for all the good it is to me.

Thank you

[cclcnal7]

I just googled it and came up with Liver Function Tests on the British Liver Trusts web site. Try that. I take it you're from the UK, I was given my biopsy result by letter 2 months ago. All it said was that I had no sign of cirrhosis but inflamed bile ducts, a sign of PBC, short and sweet and a big shock. Never even heard of it before like a lot of people. Still not seen anyone yet either.

[LindyRich in reply to cclcnal7]

I have checked but can't  find some of them.

Let me explain.

AMA POSITIVITY -1/640, 3E-BPO liver antigen positive/gp210 liver antigen positive,  M2 liver antigen positive.

Like I said, Chinese ???

Any ideas?

[cclcnal7 in reply to LindyRich]

No kidding, looks like gobbledygook to me too. I'm sure that some one on here probably knows what they mean as some are very knowledgeable. You could ring the PBC Foundation they should be able to help.

[spoul in reply to LindyRich]

Ok basically this is what it means......the AMA numbers are a titre(count) that are higher in pbc but lower in some other liver diseases. There is a reference to positive antigens in my book the m2 antigen being specific to pbc.

Hope this helps x

[spoul]

I'll try find out for you I have a pbc for medical professionals 😊

[LindyRich in reply to spoul]

Thank you. I already know my gp doesn't  know much about it

[spoul in reply to LindyRich]

Should have said the numbers do not indicate the severity of your pbc x

[spoul in reply to LindyRich]

Ok basically this is what it means......the AMA numbers are a titre(count) that are higher in pbc but lower in some other liver diseases. There is a reference to positive antigens in my book the m2 antigen being specific to pbc.

Hope this helps x

[LindyRich in reply to spoul]

Thank you. That helps.

Best wishes

[butterflyEi]

If you do not find it from other sources, email the Foundation I am sure they will be able to be of assistance.

[Hidden]

Hello LindyRich.

Make an appointment with your own general practitioner.  I did several years ago to have some blood results explained after I got an 'OK for this patient' back when I asked how my blood work was (I had been diagnosed PBC about 18mths then) and then got print-out.

I don't think personally that it is a good idea looking online as for a start I noticed long ago that labs vary with their description of the bloods done (found the abbreviations for some do vary, even the print-outs I have, the readings have been done in another way) and often it can confuse oneself even more.

I found my GP willing to go through what I didn't understand.

[LindyRich in reply to Hidden]

Thank you. My gp admits she doesn't know much about PBC.

I will contact the foundation again.

[mollymom]

I agree with above advice. Have your Dr. explain it...as labs have different test values that they follw. Mr. Dr suggested that I do not try to figure out blood work online, could be scary or misleading to the average person.... Good luck.

[badpiglet]

Hi Lindy,

You might find the following site useful in beginning to understand the tests and your results:

labtestsonline.org.uk/

It is a learning curve!  I can never remember it all and always have to refer back to my notes to check what tests are, which are the really important ones etc.  Loads of things can affect results; age, sex, past medical history, medications, other existing conditions.  Sometimes results can also go up or down which is why doctors sometimes won't commit themselves until they seen results over months.

You may also find that the lab that does your tests in your part of the country has it's own website.

It's maybe an idea, when you get blood tests ordered by your GP or consultant to ask for a printed copy of the results.  Your consultant will send them to your GP and you can ask the receptionist to print you a copy.  When you look at your results you should see beside it the 'normal' range.  Note it is the normal range your particular lab use and may not apply to anyone else's results.  Note also that, in the main, the only tests that are carried out are ones that your GP/doctor has requested.  Generally if they haven't specifically asked for it, it won't be done.  The exceptions to this are if the lab get a positive result for some tests, they automatically carry out further tests.  An example of this is the AMA (anti mitochondrial antibody) test; if it is positive, the lab will usually screen for the more specific M2 (in turn, more specific to PBC).  In your case it looks like they've also screened for anti-3E-BPO and anti-gp210.  These are, like the AMA-M2, more specific antibody tests with the aim of aiding the doctors more accurately give a diagnosis, if they can.

Also note that for some tests eg the AMA, the result given is simply positive or negative (and therefore won't have a normal range).  This seems to be done more in the UK than in other countries and I'm not sure if it's the whole of the UK or just certain labs.  For AMA, the actual level does not (apparently) have a bearing on the state of the liver or the staging of PBC, therefore all that is relevant is whether it's positive or negative.

Another caution when looking at different sets of results over time, is that for some test results, higher may be better, not the other way round. An example of this is serum albumin level.  Sometimes it's human nature to think an increase in a test is a bad thing - not necessarily!

You may find that once they've tested for AMA and the more specific antibodies once or twice, they may not test for them again.  But the tests generally referred to as liver function tests (LFT's) will no doubt be tested on a regular basis.  Anything else eg full blood count, cholesterol, vitamin/mineral levels will be tested for if you have symptoms or concerns that lead to your doctor asking for those tests.

For me, understanding the names of the tests and why some things are tested etc gives me a little bit of confidence when dealing with the doctors.  So I've got a tiny bit of knowledge either to ask a question or roughly understand a reply or line of treatment.  Makes me feel better and less like I'm bobbing about in rough seas with no life-line.  But it's very easy to read about tests and results and jump to the wrong conclusions so I always ask the doctor, who can put it in context.

[LindyRich in reply to badpiglet]

Thank you. Your reply has helped me.

I understand what you are saying.

Also I know what you mean about rough seas and no life-line. I had my meltdown at the weekend and poor hubby copped it for nothing. But he's still here. All part of the process I believe. I was listening to someone talking about what it's like when a person is diagnosed with cancer and how they should be allowed to grieve for their lost health. I feel this is similar. I have bottled it up since March. Not a tear just disbelief. Then it hit me......

Change your name. Good piglet! ☺☺☺☺

[badpiglet in reply to LindyRich]

Thank you for making me smile!  Shouldn't smile at the thought of your hubby copping it but I think we've all been there - well, I certainly have!

For those of us who have more than one condition affecting our health, movement and life, for those of us going through the sheer hell of the peri-menopause, there is a lot of grief for lost health.  Can understand that.  But maybe if we focus too much on the loss, time keeps passing and we miss or don't value the small good things in our lives when they're happening.

Could be that now you've let off steam, things may settle down a bit in your mind and you can start to relax about it.  PBC is, for most, a very, very slow progressing condition.  Physically very tiring (and impossible?) to stay tense about something for a long time, not to mention the potential damage stress does to a body.

Sounds like you've got a good sense of humour - that's another life-line.

[LindyRich in reply to badpiglet]

Thank you. You are right.. 😊

We made it up the same day. And you have to have a sense of humour. How else would we survive??

Thank you again. Best wishes.

[Della_Williams in reply to badpiglet]

Lindy, thanks for the link. It was useful. I always like to learn more and save charts for future reference. I know most of the information by heart by now, but it's always good to refer back to it when needed, can't rely on my foggy brain all the time. Hope you are doing well. Take care. Ivette

[Belliver]

Hi Lindyrich; Getting a copy of the actual lab report is key to learning/ familiarizing oneself with the terminology & range of " normal". If you haven't already been referred to a liver specialist, my advice is to ask for a referral to one, and while waiting, jot down the questions you have, ----when you're trying to understand your diagnosis it's important to get the answers from the doctors not the Internet! . 

[LindyRich in reply to Belliver]

Thank you for your advice. I have taken it on board.

[Hidden]

This link might also help in learning more about your blood test results. Just click on the individual 'enzyme' name (highlighted in red) to read what it means.

labtestsonline.org/understa...

[LindyRich in reply to Hidden]

Thank you.

[Becca75]

I used Google when I saw my numbers were high - they've been high (really high!) since 2010 but I was only recently diagnosed. Google gave me an idea of what I could be looking at as it explained what those tests indicate.

But having said that - Google has also stressed me out lol -

[AdeleMalcolm]

Hi Lindy. It's all a big learning curve. For me too. As others have suggested the PBC foundation has lots of info. Be mindful too of the relationship between different test results. I'm still at the start of the learning process too and am amazed at the level of knowledge on this forum. An absolute treasure trove.

On long suffering husbands...I decided to stop drinking to give my liver the best chance but told hubby to carry on as normal (all within weekly consumption guidance if course) but if he apologises to me once more for having a glass of wine or beer there'll be words!! Joking aside I would be lost without his support and I'm sure the apologies will become rarer.

Take care. Adele