Elevated ALP means nothing??: My doctor says... - PBC Foundation

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Elevated ALP means nothing??

WendyMarie profile image
22 Replies

My doctor says elevated ALP means nothing as far as liver damage or outcome. Bilirubin & Albumen are the only numbers the doctors are concerned with. I am very confused. So, why is everyone happy if the ALP numbers are low?? What DOES the ALP mean is happening exactly? Can someone please answer this? Thanks.

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WendyMarie profile image
WendyMarie
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22 Replies

My doctors have never said that Bilirubin & Albumen are all they are concerned with, so to answer your question, I am always thrilled when any of my numbers are showing they are closer to the normal range. The change tells me that the regimen I am with diet, Urso and milk thistle is having a positive effect on the outcome of my blood tests. The next time I am at my doctor's office I will ask him whether he feels the same as yours. In the meantime, check out this site

labtestsonline.org/understa... will give you an explanation on the ALP test.

Try not to stress out over your what your Doctor has said, and do a little research of your own. You might also contact the foundation and see if they can offer you some explanation. I hope this helps. Have a peaceful day. Judi

Wendom profile image
Wendom

Hi my consultant said albumin and billirubin are the indicators they watch for when these change it means liver is struggling from what he said that's when they consider a transplant but I don't know how long they would have to be bad for or what range they would have to be in but it sounds like your doctor is right I have also read this too on many occasions take care x

Apparently some of these figures are used as calculations but I do know that ALP and ALT do mean something.

'Alkaline phosphatase (ALP) is a protein found in all body tissues. Tissues with particularly high amounts of ALP include the liver, bile ducts, and bone. This test is done to diagnose liver or bone disease, or to see if treatments for those diseases are working. It may be included as part of a routine liver function test.'

'Alanine transaminase (ALT). This is an enzyme that helps to process proteins. (An enzyme is a protein that helps to speed up chemical reactions. Various enzymes occur in the cells in the body.) Large amounts of ALT occur in liver cells. When the liver is injured or inflamed (as in hepatitis), the blood level of ALT usually rises.'

These are 2 of the LFT bloods and I know they do mean something otherwise we'd all have normal blood results with them!

I think I might be right in saying that as PBC progresses the bilirubin level can start to become abnormal. Apparently jaundiced patients have a rise in this.

judyt profile image
judyt

My GP always said that ALT and ALP were just enzymes and having raised amounts was probably nothing to worry about. I did follow advice and cut out alcohol, cafffeine and chocolate for about 10 years. The next thing to happen was that I was hospitalised with a bowel problem and the CT which was done at that time showed cirrhosis of my liver and portal hypertension. Obviously the deranged LFT's I had been getting all those years were the precursor to more serious damage. I was referred to a Liver specialist who is part of the transplant team at our city hospital and she diagnosed PBC about 6 months ago. I am on Urso now and my LFT's are in normal range for the first time in many years. I will have 6 monthly scans and regular blood tests to watch for any detrimental changes.

WendyMarie profile image
WendyMarie in reply to judyt

Hi Judy, for 8 yrs. i have had elevated ALP & not one dr. ever told me. Last yr. I happened to request a copy of my annual routine bloodtest. When I asked why the ALP was high, he said, "Who knows? Hundreds of patients come thru this office that have elevated enzymes...its no big deal. Probably means you just ate some fatty food such as pizza, etc. the night before the bloodtest. I then went to the gastro dr. & they did the AMA....& you know the rest of this story.

judyt profile image
judyt

Hi Wendy,

I suppose in a way it really depends on what else is going on with you in regards to your health. I have known since I was 22 that something was wrong because that was when I began to get symptoms of Scleroderma. It took until 2003 (36 years later) for anybody to recognise the Sclero which was by then well entrenched and causing me to be hospitalised.

That was the stage at which I was told I had deranged Liver Functions of unknown etiology (cause). It was also the stage that I began requesting copies of every test and every report on any test of any sort which I had. I got myself well educated by courtesy of google and once the Docs. realise that I know what I am talking about they are more likely to be polite. I always follow-up any curly questions by saying "if you don't know,just say so and I will be happy with that"

The one thing that I did slip up with obviously was asking more questions about my LFT's until I was hospitalised yet again and was told that a CT scan showed cirrhosis and portal hypertension. But NO the hospital was not interested in investigating for me and told me to follow it up myself. Fortunately I had chosen a new GP (because we had moved house) who is right up there onto things and she sent me to a Liver Specialist.

So that is why I am where I am today with a diagnosis of PBC, treatment with Urso, 6 monthly scans and regular bloods which are now showing LFT's in normal range. I had a scan this week which is showing that my Portal Hypertension has decreased and nothing else of particular note is showing up so I am really pleased.

I am a bit different from most of you because I am older -70 next year- and when my diseases were in the early stage medical science wasn't up to where it is today, so I didn't get the sort of early intervention that younger folks can now. I have 3 Autoimmune disorders plus Rheumatic Heart Disease from undiagnosed Rheumatic Fever in childhood. But I am OK, I keep myslef up with friends including those I have met on the internet on forums like this. I get lots of rest and have quiet pastimes which I can occupy myself with at home so life is OK in the main.

Best wishes

Elianan profile image
Elianan in reply to judyt

Thanks for this Judy, reading what you wrote here has helped me understand a lot more than i did. I am grateful. :) It's so good to know that URSO has worked so well for you and that your liver is stable. I am having to consider URSO myself now.

Can I ask you, if you don't mind sharing, did you have any side affects from the URSO? I am 65, and my body generally doesn't tolerate pharms very well.

WendyMarie profile image
WendyMarie

Judy, I thank you so much for your reply. What an interesting story. Amazing, isn't it, that apparently you, yourself, must take charge of your own health or else fall by the wayside. People must be PRO-ACTIVE & thank God for the internet. You're amazing ....God bless you. :)

Twiny profile image
Twiny in reply to WendyMarie

Interesting I was told elevated alp's is the indicator for pbc seems they all have different ways of diagnosing ..

Caroline_261 profile image
Caroline_261

How strange....same as me. I had full blood count and went to GP last night for results after receptionist told me I have to see the dr. She told me my ALP is slightly raised at 131 but they're not worried and would only worry if it was 160. I asked her if that is why I have pains in my joints but she said no. She then said "you've had this since 2008" - like you, I've had it for 8 years but never been told. Now they're going to test me again in the new year. I asked her what it meant, but she just told me "it's an enzyme, nothing to worry about".

gwillistexas profile image
gwillistexas in reply to Caroline_261

That “160” is an interesting number. My ALP was coming down from 248. When it hit 140, my dr said his goal was 160. I’m down to 132 & they say that’s great. Of course we all want it lower. Good luck to you.

WendyMarie profile image
WendyMarie

The Dr. told me that it normal for liver enzymes to fluctuate, just like blood pressure does. Only when it stays over 180, for an extended period of time, like 6 months, does he do further testing. Even then, he tells me if you have PBC, ALP numbers in the 200-300 range are no big deal & he's not concerned & neither should I be.

elianan54 profile image
elianan54 in reply to WendyMarie

Hi Wendy. I'm a newbie here. Was diagnosed 13 yrs ago, and have been fine with no symptoms at all. Specialist has kept 6 month checks on me with bloods etc. He handed me over to the care of my GP a few years ago, and said my GP would take care of me now. Enzyme levels have been climbing for years, and now, so she has referred me back to him. My ALP in particular is 365, and others have also risen. Waiting for scans etc now. So it's good to know that your GP told you this. Makes me worry less. Also, i don't think they have taken into account that i have the Paget's disease gene, which would also raise ALP levels. I'll know more after the scan. 2 yrs ago i had no cirrhosis or varrices, (Not sure that's the spelling).

gwillistexas profile image
gwillistexas in reply to elianan54

I was diagnosed last June with positive AMA M2 & elevated ALP of 248. It is down to 132. My ultrasound was normal & fibroscan showed mild fibrosis in the duct. ALP indicates inflammation/scarring in the ducts. AST & ALT are indications of liver & not ducts. He keeps close eye on bilirubin which he says can fluctuate, and watches ALP. Hope your numbers come down. Best wishes.

elianan54 profile image
elianan54 in reply to gwillistexas

Thanks gwillistexas.

I hope so too. Mine seem to have fluctuated for a long time without any meds. I hope this is just another wild fluctuation.

gwillistexas profile image
gwillistexas in reply to elianan54

You’re welcome. Hope all goes well for you🦋

DRK1960 profile image
DRK1960 in reply to elianan54

What kind of scan are you having?

elianan54 profile image
elianan54 in reply to DRK1960

Ultrasound.

DRK1960 profile image
DRK1960 in reply to elianan54

Thank you.

Elianan profile image
Elianan in reply to DRK1960

Hi DRK1960. Just had a Fibroscan, results are 9.6. Normal range is 7.0 and cirrhosis is seen to start around 12. So there is some cause for concern. Going for an MRCP scan next Wed 20th June.

An MRCP scan is at: (radiologyinfo.org/en/info.c...

Elianan profile image
Elianan

My liver specialist (at Kings College Hospital London) told me that ALB and BIL levels start to rise when the liver is already substantially damaged, so that's not what they are looking for initially, although that's what they might find on first blood tests. They take all blood results into account.

The aim is for them to help you NOT to get to that point if you're not already.

Also, if some of the important blood markers are looking high, they should arrange for you to have a Fibroscan, which can help them determine what degree of liver damage you have, in terms of liver fibrosis or cirrhosis.

I hope this helps. xx

NEWone01 profile image
NEWone01

I also recently had a complete blood test done. All levels with the exception of ALP came back normal. My ALP registered at 223. Definitely concerned. My GP wants me to retest in 3 months. He doesn't feel terribly concerned.

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