I wanted to start a topic regarding ALTs ASTs and Alkaline Phosphates to see what everyone has to say on these indicators.
I can’t seem to get my Alkaline Phosphate down no matter what I try… I have a great team behind me of doctors who, after 4 ERCPS and going on Ursodiol have been able to get my ALTs and ASTs down to normal levels. Does anyone have any insight on how Alkaline Phosphates work or how to get the levels down? (Mine is still 4x what it should be).
Does anyone have any healthy or holistic approaches they use to keep their ALTs and ASTs lower ? Or any medical even?
Open discussion about these indicators because I am lost as to how these numbers work yet I am told they are very important!
Sarah,
A very good topic indeed for further discussion. I’m glad your ALT & AST scores are better. I will say from my own experience, that my Alkaline Phosphatase really didn’t go down that much during my years with PSC. I know it is bothersome to see them so off the charts, but it may be a new normal for you so please don’t be overly worried about it.
We are all different, but just to give you some idea of my own situation, attached is a PDF of my CMP labs from 2014 through my transplant in 2015 on July 23rd. It will go on till the end of that year and you will see all the labs normalize. I wish you the very best in your PSC journey, and remember we are here to support you. Live life to its fullest.
Thanks for sharing Mark, your levels are almost identical to mine, except mine are showing over a similar time frame.
Thanks for explaining how your ALTs, ASTs and Akaline Phosphatase have been working. I will let it roll off me for now and it is great to see your levels in a normal range after your transplant.
Always living life to the fullest, I actually just started a new job in NYC ! Enjoying life alot especially after my recent hospitalizations. . .hope you are too
My input here is limited but my ALP went from 400 to 130 and now 90 since starting on low dose Urso and moderately changing my diet.
Now it’s basically impossible to tell if these positive changes are 100% attributed to urso alone or to the diet change… And sorry to say but I don’t really want to mess with this system right now on my end and risk increasing Alp again.
I can tell you what I did tho:
I will eat whatever my partner cooks (which at times can be quite fatty stuff, like German sausages), and when someone invites me over to a BBQ I will still have some lean red meat, but for all the food I make myself or order I choose the “liver” option. Salads, some chicken. A lot of tuna on toast. Some salmon, herring etc. I also eat one handful of walnuts a day because apparently that’s one of the only natural sources of some specific unsaturated omega fats and I also drink at least 2 black coffees a day because I read somewhere that this can kind of flush your bile.
Most of this is heavily disputed. Even with Urso people say it doesn’t help, or it might help with LFTs but not change the actual outcome (a concept that still makes no sense for me…). The coffee thing seems to be kind of controversial too, and some sources I read mention that it’s basically only a thing in females, which I am not. Everyone seems to recommend walnuts regardless though, so that’s something.
Maybe I am just lucky and my ALP just happened to improve by chance. My diagnosis is only from November 2022, so I have no long term experience at all…
I just wanted to share here in the slight off chance that I could have a positive impact. Do with all that info what you will
And good luck everyone
EDIT: I also yesterday started to take Vedolizumab (entyvio) again now for my Crohn’s - which may or may not increase the ALP again.
Hey Larry I am so grateful for your response ! Thank you!!!
It is incredibly helpful.
I also have stopped alcohol completely for almost a year now, changed diet and exercising alittle less intensely lately because I changed jobs.
But it’s difficult to tell is it just the Urso - I’m not going to lie I tried to come off it for abit to see for the same reasons as you; diet or Urso but I didn’t want to mess with the system either !
Good to hear about coffee… I know that can mess with my colitis so I’m also on the fence about coffee. Let me just add walnuts though - thanks for the recommendation.
Glad to hear your levels are down and you gave me a ton of info! Thank you!!! Hopefully your new chrons med doesn’t increase again, have you ever tried infliximab?
Sarah,
When my son started taking Vanco (diagnosed with Crohn’s and PSC Dec 2016, started Vanco Aug 2017) all his markers normalized by Nov 2017. They stayed normal until Jan 2022, when he received the 1st Covid booster. Since then they have been up and down (mostly up) and he has been diagnosed with AIH. We are still messing around with medications to address the AIH (Cellcept, Prednisone, Vanco).
In addition, although diagnosed with Crohn’s he never suffered from any symptoms. His gastro said, after his colonoscopy in October 2022, that he can’t see any evidence of Crohn’s! His latest MRI showed no change in his liver/bileducts since his initial MRI in 2016!
I think Vanco has been a miracle drug.
Are you on Vanco? There are 2 doctors in NYC who will support Vanco (Brett Fortune and Emily Schonfeld).
I have been extremely fortunate in that I have gone 15 years with PSC and ulcerative colitis and my symptoms remain very manageable without the need for medical intervention. During this time my labs will spike and then come back down to where ALT and AST are near normal. But my ALP generally remains elevated, even between spikes. I have not been able to determine anything I’m doing that causes the spikes.
I don’t know if the mild course of my diseases is due in some part to lifestyle, or if I’m just fortunate. I have always been one to get lots of exercise. I am 66 and still playing soccer every week, plus lots of walks, etc. As for diet, I simply try to eat lots of fruits, vegetables, whole grains and nuts. We eat very little red meat, emphasizing poultry, fish and vegetarian options. I eat almost no processed foods and drink mostly green tea.
Again, I don’t know how much my good fortune is down to luck versus lifestyle, but I figure the lifestyle helps me in other ways. I think that if anyone is wanting to change their lifestyle, they should not do so out of guilt, but focus on and celebrate small changes over time.
I hope that is helpful. I wish you the best with your path through this challenging disease.
I am very happy to have helped a bit! This is why I made an account here
Oh yeah, coffee also messes a bit with my colon. I also started to eat psyllium husks at about the same time I started drinking coffee. It helps with the symptoms in my particular case, but according to my doctor that’s be because my Crohn’s is only in my large intestine. A good chunk of her other patients appereantly don’t react nicely to psyllium husks. My mum has UC and too much fibre gives her pain too - so there’s that. Eventually I got accustomed to the coffee again, but it’s guaranteed to give me a bowel movement in the next 30min everytime so it requires some planning. Work from home days help a lot here.
I haven’t gotten any infliximab yet. I was on adalimumab first, before the PSC diagnosis. But that stuff would make me really tired. Like “taking it on a Friday afternoon then sleeping 14hrs and Missing half the Saturday” tired. It also stopped working after some weeks. With entyvio I got pimples but other than that it was fine. We stopped entyvio the first time my LFTs went up to rule out side effects and then started again.
I will get new bloodwork in about two weeks. I can post an update then - but as we all know PSC is a very individual journey
I’ve experienced high liver function tests for many years, now starting my 29th year with diagnosed PSC, 45th with UC.
Most recent test results: (Feb 2023)
ALK PHOS 937
AST 80
ALT 124
Total Bilirubin 2
A 900 ALP number has been typical for me. Sometimes it elevates to 1200-1500 for a month or two.
For years my bilirubin has been normal (<1.3), until the last 1-2 years.
Only for a brief couple weeks last summer (2022) was my MELD score high enough to consider transplantation.
Could be coincidental, but I was never jaundice in 28 years until a brief time after receiving Moderna COVID shots and a booster. At that time my bilirubin went up to 30. Six months post ERCP, my numbers, and particularly bilirubin, are much closer to what has been normal for me.
High numbers are concerning, but at least in in my case, they were not necessarily a predictor of immediate risk. For others, it may be different.
Keep me posted! Interesting to hear about your journey with your chrons. My sister (she lives in the UK) also has chrons but she has it in the small bowel. She’s starting on infliximab soon so I’ll keep you posted! My UC is right at the end of my colon and it’s been doing great on the inflixmab.
I can’t imagine how annoying the tiredness was, I’m glad you were able to switch over to something else or nothing at all. This PSC thing is so versatile in the ways it affects us!
I’ve been finding lately eating high fat foods like New York pizza has been taking way too long to digest and I have to take some papaya enzymes to help move things along! Have you ever had any issue with this on the ursodoil or with PSC? I’m wondering if the bile is moving too slowly now and maybe not able to treat the high fat content foods or maybe this is just totally normal and I need to stick to my clean eating plan.
Looking forward to hearing about your up and coming results!
Thanks for your response, great to have your insight it’s super helpful for me to hear that your numbers were not an immediate risk but it really is the bilirubin that’s the one to watch. I’ve noticed when I’ve had bile duct infections that number is out of whack but most of the time it’s in the normal range. I’m just happy to hear all of us are doing well with our symptoms! And hopefully keep on living life normally.
Ooo that’s so interesting! Congrats on the no medical intervention you are incredibly lucky!
So I also was doing hot yoga for 2 hours a day and I run a lot but I didn’t realise that heavy exercise does impact your numbers as much as it does! So surely it can’t be a bad thing because exercise is good for us and elevated levels are just our body’s response to exercise / fat burning etc? I am speculating here…
I love that you’re enjoying your healthy life and it sounds wonderful to be doing so much walking
So a few people have said now they’re levels jumped after or coincidentally when they had their covid shots… I wonder if this is having an impact we don’t quite know about yet?
I am so relieved to hear he is no longer dealing with chrons! What a relief. You must be so happy to hear. My sister has chrons and it has been such a struggle for her but luckily she is about to receive biologicas which have been working well for me so far.
I haven’t tried vanco - I need to do some research on what it actually does and helps with. Is there anything you’ve come across that you like about it?
