ALP results: hi all, if possible can you post... - PBC Foundation

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ALP results

meandmypbc60 profile image
8 Replies

hi all, if possible can you post your alp results cause mine have just gone up by 50% in a year.this would ge only for positive ama .thanks so much xxxx

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meandmypbc60 profile image
meandmypbc60
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8 Replies

Hello meandmy pbc60.

Earlier this year when I had my bloods done, my ALP was 271. The highest of the norm states 130 on my results. Now it seems that every time I have mine taken (this is from 12mths after diagnosis on urso - first year my LFTs and GGT dropped considerably), the ALP might go down or up and my ALT does the opposite of the ALP.

I don't know what is considered high but apparently the bilirubin is one important reading in PBC as is another (think albumin?).

My LFTs tend to go up certain times in the year and then down again another. They haven't returned to normal after 5 and half years on urso as yet but I'm considered fine for PBC with the readings currently.

I was diagnosed with PBC due to symptons (itching still have and at the time fatigue) plus the higher than normal LFTs and GGT and then it was found I had a 'high titre' of AMAs.

Gioielli profile image
Gioielli

Hi, in February mine were 165 on a scale of 70 - 110.

Gioielli profile image
Gioielli

Different clinics use different scales so sometimes not easy to make comparisons. My consultant tells me that it is unusual for someone with PBC to ever reach a normal reading and stay in it.

My alp last week was 259, I think you need to look at a number of tests as they can fluctuate. Mine are now pretty much stable and when I call for results i always get the same reply normal (for you) nothing to worry about. I only get the number because I ask for it.

GrittyReads profile image
GrittyReads

You need to know what the normal range is for ALP (as used by your surgery/hospital/test centre): as others have said, these ranges can be different in different areas. I think my results sheet always says the range in brackets after my reading, (and the units) and is: 60-130. So, it depends what you mean by 'doubled'; on my scale, if mine had gone from 60 to 120 it's still within the guidelines - though I'd hope they'd recheck.

Usually when PBC really sets in, ALP levels shoot up - way into the 100s, and in such circumstances your medic needs to rule out other causes, and repeat tests over a period of time. So ... if you already have AMAs, and/or any symptoms of PBC (fatigue, itching, unexplained joint/muscle ache, unexplained brain fog) ... or suffer from other autoimmune conditions, then they should be keeping a very close eye and retesting if the ALP is outside the expected range. My consultant said they watch both ALP and GGT closely, so if GGT is not being checked, ask for that to be tested for. Also, in my experience, it's worth asking to see one of the top PBC specialists, as even hepatologists are not that familiar with all the vagaries of PBC.

PS Also depends where you are, I'm in the UK and I can only speak with regard to our testing procedures and healthcare set-up.

meandmypbc60 profile image
meandmypbc60 in reply to GrittyReads

hi grittyreads, thank you for your reply, i just need to know other members alp result not the range , thanks for the additional info though xx

LindaVillanova profile image
LindaVillanova

Last reading was about 270, normal 130. before Urso it was 700+. Scary. Bilirubin is ok for someone with PBC - my gastro guy watches that closely as well. Being 'normal' range is not likely I am told.

abenefit profile image
abenefit

My last ALP (Alkaline Phosphate) was 518 (april 2016) and 556 (may 2016) (Normal is 33-130 here in USA)

that is down from much higher last year (over 800). Seeing all of you with such low numbers is freaking me out a little.

AST 103 (Normal is 10 - 35)

ALT 53 (N = 6 - 29)

GGT 251 (N =3 - 70)

My biopsy result in July 2016 is stage 3 fibrosis / PBC. My first known elevations of liver enzymes was 1993. But I rarely went to doctor before then and never saw my blood tests. Now I collect ALL of them that I can. Anyway, I'm currently 56..and seeing liver doc who specializes in PBC at Mt. Sinai in NYC next week. Love seeing how many people have lived a long time even with stage 4! Gives me hope.

FYI - I'm AMA negative.

ANA went from Positive 323 to negative since I cut out all animal products (meat fish, dairy, eggs, etc.) for last 8 months.

Cholesterol lowered 80 points and my xanthoma (white deposit under my eye has gone from looking like a wart to almost indetectable.

My SMA (Actin Smooth Muscle Antibody is normal.)

Bilirubin went from 2.4 to 1.7 this summer due to going out in the sun as often as I can for at least 15 - 30 minutes.

My IGM is 709 (normal is 40 - 230) not at all sure what this means.

My greatest challenges have been Vit D and Vit A. Highest D in over 10 years has been 18 (normal is over 50) even after taking 3 different forms (sublingual, liquid and vegan D3 capsules) at the same time - over 100,000 units per week. Very frustrating.

Had severe night blindness and found out it was the Vit A. Started drinking home made organic carrot juice and eating sweet potato every day along with 3 supplements (beta carotene, retinyl acetate and palmitate. Waiting to see new results but vision is back!

My worst symptoms were extreme fatigue and itching till I got off all medications, and started whole food, organic plant-based, high legumes, high fiber, vegan, low-oils diet, (not low fat - I eat an avocado most every day).

- Itching is gone.

- Antacids no longer needed - reflux is gone.

- Fatigue is much better but still happens.

Also we got whole house water filtration due to frequent chemical alerts in our local water supply. particularly a chemical that is known to cause liver problems.

That's all for know...thanks for sharing your stories!

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