ALP levels at diagnosis

[Pamcakes718]

Hi - I’m being monitored on suspicion of PBC. I’m curious for those that were diagnosed at an early stage, how elevated was your ALP? Mine continues to decline without meds, but is still elevated (161 last week).

[kimphoebe]

Hi there

Mine was in the 600 s on dx in 2012. Currently at stage 3 because am a nonresponder to uso

[4pjx__]

Mine was in the 600's. I was diagnosed in May 2017 ....stage 3 severe fibrosis. I did respond to Urso. My last check it was around 147 and has been as low as 131.

- Pam

[periwinkle88]

My alk phos was around 60 when diagnosed at stage 0. My ALT and ASt were slightly elevated. 7.5 years later my alk phos just recently hit around 80. My PBC was diagnosed by biopsy and AMA.

[eleanoradair in reply to periwinkle88]

Curious to know why a biopsy and AMA test with no raised ALP and only slightly raised ALT, AST? Were there other raised levels , symptoms, etc.

[periwinkle88 in reply to eleanoradair]

I had just been diagnosed with Hashimoto's, which is autoimmune. It was abnormal for my ALT and AST to be raised. I was seeing a functional medicine doctor, and she wanted to help me get to the bottom of my issues (at the time I was abnormally fatigued and generally not feeling well). We did monitor the LFTs for a couple months before she tested for autoimmune liver diseases, but once she did and I had the positive AMA I was sent to a gastroenterologist. He convinced me that the only way to know what was going on was with a biopsy.

[claygi]

Diagnosed in Feb 2017, ALP was 128 and ALT and AST were both doubled upper normal range about 80 each. GGT was way up at 500.

I’m in stage 2-3 fibrosis as diagnosed by an MRI with elastography in September 2018.

I now have ALP at 73, and AST is 22 and ALT is 23 both normal. On urso since 2017, 900mg a day.

Also seen on MRI, one (1) cm lesion on pancreas and multiple swollen lymph nodes, along with fibrosis.

I am always in pain, daily, so I also had a CAT scan today and it showed zero wrong with my liver, etc, but showed a mildly distended gallbladder. I’m an enigma, as now the swollen lymph nodes have disappeared.

Lastly, I had a fibrosure blood test and it showed me at stage F0. Total discrepancy in relation to the MRI results.

[Biddyb in reply to claygi]

You really are a medical conundrum good results for LFTs your readings are in normal range for sure. What is your AMA level? Have you questioned your PBC diagnosis. It’s nice to read some one has normal Liver levels. I’m waiting my latest results as my ALT was raised last test. Wish there was an answer as to why they fluctuate.

[claygi in reply to Biddyb]

I’ve got it, only urso makes me look like I don’t. My AMA is 1,280. I’m seen at UCLA Pfleger Liver Institute and the chief of the transplant program is my doctor. He said with high AMA, elevated ALP, and also that I have a constellation of many other autoimmune disorders, he’s convinced I have it. I’ve never had a biopsy and won’t.

I have Sjrogren’s, RA, and CREST Syndrome too. I’m a hot mess, but I look normal physically. I get a lot of, “oh you look so good.” The problem is I feel very sick, pain all day every day in my liver and crushing fatigue. Don’t itch though, that’s gone. My bilirubin is normal at 0.5, but each time it’s tested, it’s creeping up slowly.

[Biddyb in reply to claygi]

Poor you for you surely have more than your share of health problems thank goodness you are in good hands. Good luck with everything keep positive

[Hidden]

My ALP was 268 on dx in 2009, all other LFT’s were normal when I was tested for PBC and have remained normal over the 9 years. After the first year on URSO my ALP levels were still fluctuating between 200/250. Although the ALP has been on a slow downward trend all that time and is now at steady 170. I was not on the optimum dose of urso in the early years. I think this was the reason for such a slow response once I got onto 15mg/kg of weight that’s when it dropped to 170 and has stayed there. However, given all other important LFT’S were and still are normal and a sheer elastography in 2017 put me at stage F0-F1. I feel I’am doing okay.

My advice is, if you are diagnosed, make sure you get the correct dosage of URSO to your body weight, it’s surprising how many people are still being given the wrong dosage.

[SiriusJJ]

Hi, mine was 1033 when diagnosed in Nov 2017, urso brought down in 6 months to 450/500. My liver is in good shape despite high levels though. Consultant says levels can fluctuate when you’re ill but mine need to come down more. He said ALP 130 max for healthy person and 200 max for PBC person is the criteria he works to. I am in UK.

[Pamela4475]

Mine was 185 I believe... came down a little with life changes but came to normal levels with urso

[mrspeffer]

Good morning...It's curious that you are experiencing a decrease in ALP level without meds. Could it be that they were raised by something else? Also, what are your other liver enzyme levels at? It's hard to give direction without the whole picture. My ALP was is the 400's when diagnosed 22 years ago. Slowly creeping upwards over the years on no medication.

[Pamcakes718 in reply to mrspeffer]

Hi - My AST was slightly elevated at 37, normal range (11-32). All other tests were in normal range. IgM not elevated, but I tested positive for AMA M2. Hence why they are chasing this. I did have quite a year last year (catheter ablation for Aflutter heart arrhythmia, thyroidectomy, suspicion of lymphoma that turned out not to be the case). I've been on tons of different meds, antihistamines, anti-depressants (given all the scares). My ALP was high in Sept. following thyroidectomy. It was 240. Then 204 in Oct. Then 180 in Nov. Then 160 last week. It keeps declining, but I've stopped the antihistamines. They still can't get my TSH right following the thyroidectomy. I'm feeling like the ALP would continue to rise if this was PBC, vs. decline, but what do I know! My hepatologist advised to wait and retest in 3 months. What are your thoughts?

[Suzi8]

I’m on 5/300ml/day for PBC (year 12 and now 55 yrs old) and my Alk Phos is 480. Don’t fret before you need to! Take care😉

[Pamcakes718 in reply to Suzi8]

Thanks. I just wish there was more definitive direction. All of this wait and see is taking a toll on me.

[Suzi8 in reply to Pamcakes718]

My life hasn’t changed a whole lot since PBC. I’m tired and there are a few other things that go along with it BUT I hike, bike, went sky diving on my 50th and haven’t let the disease stop me. I DO realize things won’t get better.... only worse. However, I just may get ran over by a truck before PBC gets me so until then, I’m gonna live till I die!

[JuliaGal]

When the suspicion of PBC came up, I had ALP levels of 157, 140, 160 ( in a 3 month period). Then one month before diagnosis my ALP was 130, I had a liver biopsy and it went up to 170 one month after biopsy.

[Pamcakes718 in reply to JuliaGal]

Did the biopsy confirm PBC?

[JuliaGal in reply to Pamcakes718]

My doctor said it confirmed PBC. I also obtained a copy of the biopsy report, which basically stated observations were compatible with PBC. However diagnosis said chronic hepatitis, which scared me but it sound like a catch all phrase. My doctor also said he could rule out AIH. I was just diagnosed Dec 2018. You can email me too if you want to talk. [e-mail]

[kiwivivr]

Hi there. my alp was 163 at diagnosis. Along with slightly elevated alt and ggt. That was on feb 2017. Since then i went on urso in Sept 2017 and now all liver results are back to normal levels. Only other indicator was my ama was 1:320 and has remained at that level.

[lilygrower]

Mine was only 152 at diagnosis. Request the AMA test for antibodies.