My Mum was diagnosed with PSC almost 4 years ago. She was 78 at this point. She’s been on urso since and has been monitored since with blood tests and ultrasounds. I look after her and I’ve recently had to have blood tests and I was found to have raised ALP but all other liver results including GGT were normal. My GP has said it’s highly unlikely that I have it too but I’m so worried. I am her sole carer and I’m worried the impact of me being diagnosed will have on her care. Any advice would be so gratefully received. Is it likely that other LFTs would be raised. I’ve read so much scary and conflicting things.
Thank you for reading.
It IS possible that you may have inherited PSC. There are many things that can raise your ALP, like infection. Unless you have upper R abdominal pain, itching, or more of the signs of PSC, you probably don’t have it.
Thank you for taking the time to reply, I genuinely do appreciate it. I don’t really have any of the symptoms you describe. My mum has been on Urso since her diagnosis. Her last bloods were all normal and the consultant she saw on her last check in June questioned her diagnosis. We are both very confused by this.
I think it is worth continuing to track your ALP and to investigate further if the elevation persists.
Per the PSC Partners registry, 12 people with PSC indicated that they had a mother or father with PSC out of 1142 respondents, or roughly 1 in 100. The prevalence of PSC in the general population is something like 1 in 10,000, so this suggests that having a parent with PSC may increase one’s odds of ending up with the disease.
Thanks for your post. I’m glad you are there for your mom as she deals with PSC. I do trust she’s under the care of a hepatologist there in the UK and not just a GI but one that is a specialist in liver disease.
I think as others have stated that you should not overly worry about getting PSC. Although there’s the possibility you might acquire it through your mother, PSC is so rare you shouldn’t worry yourself to death over it. Just concentrate now on doing all you can for your mother. If it comes your way one day you can deal with it then. There’s nothing to prevent it if you are to get it so why worry about it. We must live life to its fullest and deal with sickness and disease when it comes but not before hand.
Now it may be prudent for you to have LFT’s drawn once a year during your annual physical and if PSC comes your numbers will start to climb significantly especially bilirubin, AST, ALT, Alkaline Phosphotase, etc. You will also experience itching, probably weight loss and jaundice may begin to present as well.
I wish you a very long and healthy life my friend. We are here for you though whenever you wish to ask questions or contribute to the forum. Thanks again for all you are doing for you mum.
I had high alp and alt which turned out to be small duct psc. I’m not sure how many tests I had looking for other causes of the high lfts but there were a lot. What i’m Saying is that there are any number of reasons why your ALp is raised. It took a while for me to get my diagnosis as I never had itching, jaundice, etc… and Mrcp’s showed normal. The reason why I went through the tests were because of fatigue, night sweats and blood in stool. If you have no symptoms other than elevated alp and you feel otherwise healthy I wouldn’t be overly concerned.
Your mum is lucky she has you for her caring needs. I know it is difficult but try and put any anxieties re your raised alp to the back of your mind and if any symptoms hit you that are out of the ordinary get a referral to a hepatologist. I know the ‘confusion’ you speak of. Unfortunately psc is rare so there isn’t loads of info. I have found practically no information about small duct psc.
Thank you all so very much for your replies. I have felt so alone looking after my Mum and the added worry with my own health has made me feel like a very small person trying to deal with a very big thing. My ALP was normal I believe so maybe I’m worrying too much. I love my Mother dearly, she has always been there for me so it’s the least I can do for her. Thank you for being so welcoming. I feel much less alone.
Sorry. I meant my ALT was normal
Breathe deep. Take several more and get you fear under control. While it sounds like something ails you, it is very unlikely (but not impossible) that it is PSC. There has never been a genetic link found by researchers. Liver function test results can vary over time. Talk to your doctor about your symptoms and tell him/her you are trying to understand your situation and provide care for your Mum. A good doctor will take that into consideration and spend the time necessary to help you. If you have been seeing a internal medicine doctor, perhaps he/she will refer you to a gastroenterologist? They specialize in digestive diseases, but not specifically the liver. The gastro doctor can refer you to a hepatologist, who is a liver disease specialist. These additional doctors will be helpful in diagnosing and treating your problem. Good luck!
Thank you for your reply.
I’m under the care of my GP at the moment. He knows my situation well as he has been my family doctor for many years. He requested an ALP iso enzyme test, not sure what the lab process for that is here in the UK, but when he gave me the results he said that they tested ALP again, ALT again and GGT plus a separate test for AST. My ALP was still raised albeit very slightly less but the other tests were normal. I’m still very confused by it all. It’s good to have people on this forum to talk with. It has taken away some of the isolation.
How does the National Health Service assist getting you to see a hepatologist? Is it difficult to do? Interpreting liver function test scores is difficult, at best. They monitored my test scores for 13 years before the internist sent me to a hepatologist. It was only then that he diagnosed my PSC through an MRI and a liver biopsy. I had been given two liver biopsies in previous years. A review of the previous biopsy indicated I had had PSC for 7 years already! Those biopsies showed cirrhosis, but two regular doctors did not know how to diagnose it as PSC. I hope you get access to a hepatologist with the National Health Service. They are frequently connected with a transplant hospital with a medical school.