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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Small duct psc or is it?

Hi guys

Just got diagnosed with potentially having small duct psc yesterday.
The gastro was pretty vague and didn’t seem to know as huge amount about small duct and was 80% sure as most of my blood tests didn’t point to psc. But also biopsy does show some damage to my small ducts albeit not bad at the moment.
I have 0 symptoms and am an avid lover of competing in Strongman so am in the gym and lot. I am never tired and find it very easy to put weight (muscle) on for competition.
The gastro seems to think that it is possible that I am either very early on in the disease or just one of the lucky ones that small duct just isn’t giving me any issues.
A year ago I stupidly took a gym supplement branded as a natural testosterone booster (came free with a large protein order) I researched the ingredients and they all were fine with no I’ll affects. So thought why not can’t hurt, after 4 weeks I felt rubbish so came off them.
I had a blood test and all was good but some liver enzymes were high. I decided to research the company that made the "natural " product and found they are notorious for selling pro hormones (how naive of me should of looked into them first) , which are horrendous on the liver. I am extremely against performance enhancing drugs for health reasons and some competition are tested so was gutted that it could of been that.
A year later and my enzymes improved massively with tudca (over the counter udca) coming back to normal more or less. Dr said to come off them and see what happened, and my enzymes crept up again but not as badly.
Had my biopsy and it showed some damage to small ducts hence the diagnosis as Dr said drugs wouldn’t damage the ducts just chemically turn them off.
However after some research they can in fact damage the ducts and is fairly common with a lot of drugs.
I am now back on prescription udca and being monitored and awaiting a colon exam, showing no signs of issues there but just a precaution to eliminate ibd.
It’s been a right nightmare and feel none the wiser with it all and am now seeking a specialist but not so easy to find in Devon England so will have to look further out.
Thanks for letting me be part of the community
Dane

1 Like

I feel like we got a lot of the same story , I’m a fitness guy too who as dabbled with supliments for years . but I have mild med fibrosis , have gone through it all too , including mri , MRCP , fibroscan , biopsy and a few ultrasounds. Just did the colonoscopy the other week and a huge surprise to me I have UC with zero symptoms. My Hep still thinks it’s small duct PSC aswell after consulting with panel , but I find it hard to believe it’s not classic psc . Also started the bile acid which normalized the values . My Alp, ast , alt and ggt were all 3-5 times or more . ( that’s what started the hunt ) . Have you done all the scans too?

I have had ultrasound, MRI and biopsy and a million blood tests. Booked in for an colonoscopy at some point. All scans are clear, got told my MRI looked great. Biopsy showed some damage to small ducts but 0 evidence that large ducts are affected.
Have been emailing a specialist in the field and he shed some light on small duct psc saying that 75 to 80% of small duct patients lead full length life’s with little problems.
He gave me details of another Dr that is researching psc with him at Oxford. He seemed quite positive about small duct future treatments and psc treatment in general.
My enzymes were never that high. Alp only double normal range at it’s worst without medication. Same with alt, ggt was at 500 at it’s worst but dropped to 150 with a couple months of tudca. Started creeping back up after ceasing tudca.
Now taking pharmaceutical udca now so will see what happens. Specialist seems to think it’s a good thing that small duct is responding to udca as it’s not normally prescribed, consistent with some findings that one possible cause of damaged bile ducts is toxic bile. In which case udca would help it all lot due to it’s effect on bile concentration.
Trying to seek out at practicing Dr that is a specialist in the field as who I have spoken to so far are research Dr’s so don’t see people for standard medical care.

PSC can be strange. I am pretty healthy and active. I have no symptoms except for random, sudden, rare but significant elevation in enzymes ( so far every 5 years or so), otherwise always normal. I get an ERCP with dilation when I have flares, but in between, I have no symptoms or issues. Mild fibrosis of the liver. As a health care provider, I am doubtful supplements are the culprit. It’s all random or somewhat genetic in my case (Family history of autoimmune disease). I take Ursodiol three times daily. Be sure to see a Hepatologist who is familiar and comfortable with the disease since it can progress to cancer insidiously.
Hang in there. Best wishes.
Ria

Thank you for the reply. I am waiting on my colon exam then going to travel to see a specialist in psc. I have chatted to one research Dr and he says small duct psc has a very good prognosis with most patients living b normal life span with little or no intervention. Especially if you respond to udca.

I have small duct psc and indeterminate colitis controlled by mesalazine. I don’t take any meds for the SD PSC. I have virtually no symptoms but fatigue can be a problem. I have never used gym supplements but my diagnosis came about when I was going through some fairly heavy ptsd symptoms. Same as you, no issues in large ducts but biopsy shows damage in the small ducts. Unlike you I did have bleeding related to my coloitis but haven’t had for a couple of years now. I live in London and am lucky to be under the care of the royal free hospital which seems to have excellent hepatology department. My liver numbers are all stable and within 1.5x normal range which is apparently good.

From what I have read and been told my results are fairly unusual as not everything points to psc but biopsy shows some damage to small ducts albeit not bad. Drug induced liver injury was suspected but now psc. Annoyingly my gastro said it’s definitely not drug induced as in his words “they don’t do that”. After some research what I suspect the supplements to be spiked with do exactly that… in many cases.

Finally some update, no ibd present. Liver enzymes have normalised and all other scans show no progression. They have said it is either drug induced liver damage or very early small duct PSC. They can’t give me a definite as they look the same on scans/biopsy. I still have no symptoms so basically just got to wait and see if anything progresses over the coming years. But the specialist is pretty positive I won’t have any issues for quite some time if at all as more research is emerging about small duct PSC. He also said a few treatments are in the final stages of testing which could be very positive for people with mild versions on PSC.

Dane,
Glad to hear that you received some good news. I hope things continue to do well for you. Thanks for checking in.

Mark

Hi Ria,
your story here sounds much like mine: (quote from another reply of mine)

" it took about 50 years to diagnose my small duct PSC. I had attacks about every 8 to 15 years with LFT’s shooting high. Before the medics could find anything values went down to normal (within 10 to 14 days). Diagnose finally came when one out of many biopsies showed the typical pattern."

Fatigue is now almost permanent, digestion seems to be disturbed, reaction to medicine slow or not as expected.
All the best for you and greetings
Rippi

Rippi, sorry you are having these problems.
Jeff

Blimey 50 years, at least it hasn’t seemed to have shortened your lifespan which is something. I still remain completely symptom free andntests are still pretty much clear. Specialist now only wants to see me yearly but isn’t worried as liver is still functioning well and is still soft and not scarred.

Nice.

up to now my liver looks soft without scars as well. So far so good. But I’m definitely slowed down. I wonder who lasts longer, me or my liver …

Rippi, up until I saw your post, I never before thought of it as a competition. But, in effect, it is.