Newly diagnosed

[Kieraferret]

Hi I've just been diagnosed with PBC last week I don't understand the blood test results , the consultant didn't explain very well are they high or low my LFTs show an ALP of 795 with a gamma GT 1000 ALT 224 and i am macrocytic with an MCV of 98 be grateful for an explanation please .

[skippydownunder]

Hi Kieraferret

The LFTs are high. The ALP should be between 20-105, GGT should be between 5-35, AST between 10-35 and ALT between 5-30. Not sure what MCV is but it should be between 80-100. What is your bilirubin? Your results are very similar to mine wen I was first diagnosed. I was put on Ursofalk but my LFTs didn't improve so I was given methotrexate as well and results have improved. Also positive AMA (antimiticondrial antibody) is used for diagnosis. Write down all your questions and ask your doctor as it can be really hard to remember everything you want to ask when you are in there. Also, they don't have all the answers either. I believe though that there is a lot they can do to halt the progression of PBC and you just have to look after yourself and stay positive. I know it's not always easy though.

Skippy

[Kieraferret in reply to skippydownunder]

Thanks skippy I'm going to see the doctor on Thursday , I wii write all the questions down .

[Hidden]

Hello.

My ALP at diagnose was 603 but it had come down naturally from Aug 2010 to Nov 2010. This was the final blood test pre-urso which I started on Dec 2010. My ALT had also dropped in the same months pre-urso. A few had slightly risen though.

My GGT was 642 Aug 2010 but in Nov 2010 prior to diagnose it had dropped to 590 naturally too. What I am saying is it is possible for the LFTs to decline, it seems with or without urso but urso is supposed to add more (synthetic) bile to our system thus aiding digestion better which in turn helps the liver to be less stressful and start repairing itself even if minimal damage at the time. I think this is where urso is apparently said to hold back the progression of PBC.

At the start of urso I sprinted off the 'starting block' there but by the end of the first year my LFTs had dropped significantly but then they started to slowly rise a bit again. During last year I also had the same dips and then a bit of a rise again. If I was plot the results on a chart I'd now have a wavy line but it is said of my LFTs now that they are panning out within a normal range for someone with PBC as we are not expected to have normal LFTs tho' some do, always some of an exception.

I had my LFTs taken again 4mths ago and my ALP was 280 iu/L and the normal range on the print-out is between 30 to 130 so you can see there. My GGT was 171 and normal range states between 0 and 65 but the remark is 'OK for this patient' due to having known PBC.

I've only mentioned the LFTs that you Kieraferret has said your are so you can see and maybe at this point in time don't get too disheartened by your results. I know in the months I was having constant blood tests that either turned up as normal (ie the Wilsons Disease one (copper overload)) or the LFTs were slowly continuing to rise, I did re-evaluate things even more and started to take even more notice of what I was eating. I cut out MSG, artificial sweeteners (difficult at times as even a simple ice-cream cone contains saccharin - well here in UK anyway) and other certain additives and cut down even further on fat. Never much of a drinker, I ceased altogether from my first abnormal LFT. I do believe that was one reason my LFTs did a slight decrease from the Aug to Nov blood check.

I started with itching earlier in 2010, that was what took me to a GP. I did have fatigue bad at the time but thought it was due to long working hours over 6 days a week and had I not have itched I'd not have seen a GP. I tested positive for AMAs so that is how I was diagnosed Dec 2010.

One of the results that is apparently a good measure in PBC and I expect other liver conditions is bilirubin. Mine has always checked out as normal as does certain others, they have 'all along' so far.

I don't these days take much notice of the other bloods in the FBC (full blood count). I do have a couple that are a bit abnormal but they again are what can be expected with PBC. Some actually indicate that there is a liver problem and with PBC expect them not to return to normal either.

I expect you have started on urso. If so wait until you see your first blood check after starting and then you will as I did feel a lot differently even if there isn't a big big change in the LFTs. I requested print-outs of my blood work at diagnose and got them all from 2010. I have since asked for them each time and these days a quick glance at them and I put them away.

One thing I find difficult with PBC regardless of how you are feeling at the time blood is taken, can be a bit odd when you get them. I've found odd times I have felt really on top of the world, the bloods didn't come up as good but when I wasn't feeling that way inclined I'd get pretty good results so you just never know.

I go day-to-day with how I am feeling. I wouldn't know I had PBC but for itching at night. It has subsided somewhat since starting urso Dec 2010 but I wish it had actually almost vanished. I don't seem to get very tired during the day unless I have had a night of restlessness due to the itching and that is then the cause of feeling tired mid-aft.

My husband and I started changing our lives together, have more free time as you never really do know with the unpredictability of PBC. I just don't think about what could be going on inside, I concentrate on living life. I always thought I had been pretty healthy over the years, rarely drank nor smoked, plenty of walking, manual jobs but when I was46 I got the diagnosis PBC.

I know from having this PBC now for 3yrs., one thing I know for certain is that it can be tough in the 'early days' of finding out and then taking the urso. (I did suffer a couple mild side-effects but they were short-lived.) But slowly you do start to come round and try to get on with life, at the end of the day nothing else one can do if you are doing your utmost best.

[Kieraferret in reply to Hidden]

That's very reassuring , thanks

[Chippy45]

Always ask for copy of test results.....then you can compare as well.

[Kieraferret in reply to Chippy45]

Great idea, thanks I will