all phos

[Samanthaann]

hi, my alk phos started last year at 152. Went on urso and 6 months later it dropped to 118. Today whic is 6 month later alk went back up to 146. Have not discussed with doctor yet. Has anyone else experienced the fluctuation? Thank you

[gwillistexas]

I’ve been told it can fluctuate. Mine is at 140 but my hepatologist isn’t alarmed.

[Samanthaann in reply to gwillistexas]

Thank you Gail. I always appreciate your replies 🙂

[gwillistexas in reply to Samanthaann]

You’re welcome. We all like for that number to stay down. Remember, Alk phos isn’t always from the liver. It can also be from the bones. Try not worry. My dr says if he gets concerned, then I can, lol!

[Gaspereaux in reply to gwillistexas]

If it is from the bones, how do we confirm it/. My ALP is now 177 and there are no sights of osteo other than slight osteopenia in one hip….how else can it be detected?

[gwillistexas in reply to Gaspereaux]

I’ve searched this. I don’t have an answer but if you will search “bones and alkaline Phosphotase “ you wil find several links. Cleveland Clonic is a good one.

[gwillistexas in reply to gwillistexas]

“Clinic”

[Samanthaann in reply to gwillistexas]

Hi Gail - update. You were right. My doc sent me a message today that my alk phos was mildly elevated at 146. He was not alarmed. I guess I was concerned when it went up from 118. Have you heard of taking milk thistle to help lower the number? I was doing some research and saw this could help. Thanks again for your replies.

[gwillistexas in reply to Samanthaann]

My hepatologist doesn’t recommend milk thistle or any herbs. I do strictly what he tells me and that’s all.

[Samanthaann in reply to gwillistexas]

Ok thanks I think I will follow that too

[iagra]

140 is good! It does fluctuate. Mine was 138 in august, and just did another test, in october, it climbed to 178, highest in the last three years. So, not happy about it. Will do another test in the spring.

[TylerA]

Hi there my Alk phos was intially over 200 and went down to 89 when I started urso. Now it fluctuates between 104 and 113 although it did briefly go up to 124 last year after I ran a half marathon not long after having covid - a couple of weeks later it dropped back down to 104. So I do wonder whether certain factors such as illness, overdoing things, stress etc can cause fluctuations. Either way I don’t think your numbers don’t sound too high. Interestingly I also got my bloods done non fasting one day and fasting the next and my alk phos had gone down 7 points. I might make sure all my blood tests are fasting from now on! Hope this helps.

[islandanonymous in reply to TylerA]

I was wondering the same thing about overdoing things. Reason is, after 11 years having my ALP stay around 110 (due to PBC), I had my highest ever result at 137. I've been power walking every day and also been going to the gym 3x a week for about six months. The other thing is, I had a big coffee and a giant sugary cookie just before my test! So I'm going to re-take the test and fast first. But I do wonder if working out more than I used to has caused the high ALP result.

[NotorDJP]

I would love to have you alls numbers. Mine stays in thee 300s. Latest was 365. But it has fluctuated from higher 300s to lower. Its stable until recently. I may have to go on something else I've been diagnosed for nearly 10 years now.

[Samanthaann]

thank you for the reply. I learn so much from all of you. I hope the numbers stabilize

[Spanita]

Hi I am having fluctuations in ALP too, but overall they are not super high. My dr seems confused but says he's not very worried as other results are all good including scans. I have been on urso for 6 months so have another 6 months before secondary treatment options are considered. He has suggested cutting out all alcohol which makes me sad, I have a healthy lifestyle in general and have been following his advice so far (<10 units / week) but it's nice to be able to enjoy a glass of wine occasionally.

[Samanthaann]

please keep us informed of how your numbers due at 1 year

[PBC2014]

when I was first diagnosed at 25 years old, my Alk phos was 995. Over the last 10 years it has fluctuated a bunch with the help of urso and Ocaliva, it has come down and is hanging out in the 200 range. Not ideal, but my hepatologist is much happier with this number. I believe the fluctuations are pretty normal. Good luck, and prayers!!