I was diagnosed with pbc in December on the basis of AMA and liver biopsy (liver function tests have always been normal).
I am not yet on URSO.
My lft results today show all levels within normal range but ALP has gone from 54 up to 73 (normal is up to 135).
Does anyone know is this sort of fluctuation is normal in a healthy person - or does it show the PBC is gradually starting to raise my ALP levels?
Thanks!
Hello Kitsalano.
I can't say whether ALP fluctuates in a person who would normally have normal ALP levels but I somehow expect that it would stay within a normal range given the other LFTs were all normal.
I do think that certain things in our dietary would have the LFTs fluctuating from time to time but that's why we have a normal scale range I expect.
I had an ALP of 278 in May 2010, a few months after going to see my GP with itching (I was fatigued but that has long since left me unlike itching). Mine slowly rose to 608 by late Aug 2010 but early Nov on a recheck at my first outpatient appointment and prior to diagnosis my ALP had only risen to 614 and in Dec 2010 after starting urso by Feb 2011 it had gone down to 301.
3yrs on it stands at 231. I had a recheck of my bloods February.
I noticed from my other LFTs from Aug 2010 to Nov 2010 prior to diagnosis most of them had actually decreased naturally without any urso.
Certain things like new but temporary medications, expect feeling a bit under the weather and also alcohol can all have some effect on the LFTs. I was actually asked after my first abnormal LFTs early 2010 how much I drank to which I stated I wasn't a big drinker which was truthful and I'd not had any alcohol since Christmas which was 3 months prior. (I've not had even one glass of alcohol since my first abnormal LFTs.)
Given your recent ALP was almost half of the highest reading for normal I'd definitely not be bothering there at all. I think what can cause alarm is when you see a figure has risen but I've found out that it is normal for a reading that has climbed (or dropped) to appear to be going in the wrong way, it is generally noted once it reaches the abnormal state and then usually 2 abnormal readings are of more concern then. (I had another blood test November last year as one of my full blood count (FBC) had been one under normal flagging low count of HB for the last 3 repeats. The results was then reading two below so I had ferritin, Vit B12 and folate checks. Ferritin came out normal but on the lowest scale for normal so it was said I was 'low in iron' and had a short course of iron tablets.)
Thanks Peridot. I think I will focus on being well within the normal range for now but perhaps test a bit more frequently and keep an eye on it.
I found that prior to diagnosis of PBC my LFT's were constantly deranged (their term not mine) and would fluctuate wildly, but always outside the normal range.
Hi Kitsilano,
I've been wondering how you were getting on.
Try not to worry - I'm coming to the conclusion that worry makes anything worse!
As Periodot says, you are within the normal range, and I believe people's ALP levels go into the 100s when things get serious (someone correct me if I'm wrong, I'm saying this from memory).
Also, the PBC F booklet says that levels are increased by some drugs - so are you on any other medication, besides Urso (Well .. did you start taking it?) - and decreased by Vit D, so were you on more Vit D before? I don't mean these questions to be too serious, just examples of things that can cause variation, and I imagine there's lots more causes. Check with your GP, or even consultant if you can. How often are you having tests repeated at the moment? I guess you will need a few more to have a clearer picture.
My Alk Ph is 80, bang in the middle. This is the first time I've asked for my results printout - always accepted 'normal' before, and told myself I don't have PBC. I'm about to ask for the last 5 readings, to see if there are gradual changes. [I think I'd told you] My GP had suggested challenging my diagnosis, but I want to check for changes first, and if they are creeping up (nice or not, I don't imagine my GPs would do anything until they get 'abnormal'), maybe request an MRCP scan - at least - earlier rather than later.
Stay calm and look after yourself.
Thanks GrittyReads, Still not on Urso but I have been taking Vitamin D since December. I think illness can also affect lfts and I am recovering from flu. I'm going to ask my GP what he thinks but will probably test again in 2 months and see if there are any further increases. Let me know how you get on with your blood results and MRCP. It's hard not knowing isn't it.
You are so right. Yet I feel such a fraud on here, not really (or officially) having anything wrong, when others are coping so well with horrendous symptoms. But it is a great site for support. Let us all know how things are when you are retested. Take care.
Something else to add...I notice that my ALP and ALT both bounce up and down, one can be slightly higher, the other lower when I have repeat bloods. Given my ALP was just over 600 prior to diagnose and I was prescribed uro it seems that there must be an even higher figure that exists to alarm a doctor.
Though not liver-related, my childrens' grandad was said to have almost hardly any kidney function 2yrs ago and my daughter said his blood results were 'off the scale' for abnormal but grandad is still plodding along due to the fact that he wasn't deemed a candidate for kidney dialysis.
I think given the fact you are appearing to have normal LFTs at repeats Kitsilano what I would be inclined to do is try to look after yourself now even more than you thought you were, it more than likely can make all the difference. I thought I was looking after myself prior to 2010, never smoked, only drank odd times with family at celebrations and ate lots of fruit and veg., etc but PBC struck.
The real frustration of having PBC is that without any bloods taken we'd be none the wiser to how we are doing but at the same time it can be a bit of a fraught time when they are looming and then the wait for a few days for the results. Have to admit these days, well 3yrs on I don't actually bother too much at all, just glance, often know something is better and something isn't as I tend to have some LFTs go down from last one, odd ones go up. I also think the season have some implications. My results tend to get better come May time and then start to wane off during winter. So that is another thing to think about.....
I know it's been mentioned before in relation to PBC, but I wonder about vitamin D, and the fact that we get even less - 'cos of lack of sun - in winter. Over on the 'Thyroid site' there's a lot about the importance of Vit D. It's dodgy, as it's one of the vitamins that is toxic in high doses, but I wonder if it's a lack of this - and/or other things - that makes us worse in winter? I don't think I have any PBC symptoms - anytime - but I'm beginning to wonder if I do have some 'hypothyroid' type ones in winter. I'm also wondering if some of the things I put down to perimenopause could be hypo / vit or min lack / or SAD related. That's the problem with so much of our [western/ UK specialists-style] medicine / healthcare, there's no thinking across the spectrum.
What is thyroid panel blood work. I.e. TSH T3 and T4.
Get one.
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