Good morning everyone I hope you are doing ok. I thought I would update you all and maybe get a bit of feedback. I had a follow up with my consultant who is a gastroenterologist not a haematologist. He informed me that I have nash but they are still not sure of the cause. He asked me to have a blood test to try to get a diagnosis of sarcoidosis. I had it and should have the results next week. He is also asking a professor to review my biopsy report to try to make a decision about whether or not it could be pbc. The blood test for pbc was negative but apparently you can have it with a negative blood test. If all of this proves inconclusive he has advised a further fibroscan in 3 years time. As you can imagine I am not convinced that a resolution will be found. I am wondering also if a 3 yearly fibroscan is enough monitoring after a diagnosis of nash especially if a cause is not found. I am considering asking my gp to refer me to a liver hospital as my consultant although a lovely man has not been able to diagnose me in 14 years. Any advice would be most appreciated. Thank you.
Follow up consultantation: Good morning... - British Liver Trust
Follow up consultantation
Good morning,
It is very important that you get some clarification about your diagnosis and an appropriate followup plan. A referral to a liver specialist would be a good way to do this.
Thanks for the advice. I will wait for the blood results and the professors opinion and then insist on a follow up. Do you know where I should be referred? I live in Kent.
Here is a link to all the liver units in the UK - your GP or consultant will be able to refer you to the appropriate one
britishlivertrust.org.uk/li...
regards
Thanks very much
If during the 14 years of trying to get a diagnosis you had debilitating symptoms of liver problems you should be seen by a liver specialist.
If those 14 years of tests has been because of health anxiety that needs addressing as well.
If you do enough tests and eventualy a few come back with minor variations of normal it adds to anxiety but probably means all is well health wise.
I think I would listen to my Dr and review in 3 years.
But Roy 3 years is an incredibly long time. Not sure I would wait 3 years! Maybe 3 months. Just me of course.
Miles
Hi Roy thanks for responding. I have indeed had debilitating symptoms for the last 14 years. I have been hospitalized numerous times with severe liver and pancreas pain. My liver enzymes have then been sky high so Drs did scans to check for bile duct stones or anything else obvious but nothing is ever seen and the severe pain eventually subsides and bloods return to normal. I have constant pain daily upper right and the last 2 years this has also been in the side and the back. Definitely not health anxiety but I am anxious that I don't have a diagnosis as I feel I am getting worse but have no treatment. I can understand how it might look like that after all these years though.
Hi Millie,
Your situation sounds a little like mine. I too couldn't get a diagnosis of what the actual cause of my liver damage was in the 8 or 9 years up to when I had my transplant. It was only after the transplant the cause was found. There were suspicions of various things over the years but none proved conclusive on the myriad of tests. So sometimes, with some people, it can be very difficult to establish a cause. Basically you're just an awkward so and so, just like me 🤣.
With the 3 year gap between fibroscan suggestion, I personally probably wouldn't be too concerned with that. I'm not entirely sure what the protocol is these days for intervals between those scans, but if its reasonably normal then that may be what is recommended. Just ask your consultant next time or by all mean check out the NICE guidelines to check yourself. I suspect though, that if your symptoms change or there is a change in your usual check up tests then he'd review that anyway. That's what I found tended to happen with me anyway.
In terms of seeking a referral elsewhere then it may be worth seeing if your consultant already has that tertiary advice to call upon. My hospital had numerous discussions at various stages with Birmingham about me and also sent various results and scans/biopsies through for their opinion also. However, I appreciate that having their own scans and specialists may have a benefit. You still may not get an answer though unfortunately.
Good luck and hope you will be able to give up your membership of the "medical mystery" club shortly.
Thank you Kristian yes I do feel like a medical mystery and it can be very exhausting having all these possible diagnoses but never being able to nail it. If I wasn't struggling so much daily with pain and inability to enjoy or digest food I would tell them not to bother any more. However I owe it to myself to get an answer and hopefully there is something that can be done to help me. It must have been a relief for you to finally know what was wrong but also a shock and a lot to take in at the time. Wishing you well.
There is a negative AMA version and if your ALP is still in the normal range, you can see how difficult it would be to make a diagnosis. Biopsies are considered the gold standard by some consultants when it’s not clear what the problem is. So It’s good that a professor is going to view your biopsy results, and hopefully can make some comment on it.
I think three yearly checks are too long if there is still a question mark on PBC being the diagnosis. I can only say what I’d do in the given situation. Having PBC myself and knowing that starting medication early gives the best outcome. If it were me I’d be pushing to see a liver specialist.
Hi Candy thank you for your advice. I will push for that if I'm still left in the dark after the professors had a look at the biopsy report. There was evidence of bile duct damage on the report as well as inflammation and a large granuloma. This apparently raises the possibility of pbc but pbc usually destroys bile ducts and not just damages them. It's all so complicated. The granuloma points towards sarcoidosis so there are at least 2 possible diagnoses. I appreciate you responding. Have a good day.
Hi
I really hope you get sorted very soon, I do know what it's like to be fobbed off. Love and hugs Lynne xxxx
Thanks Lynn for your continued support. I hope that you are feeling better than you were x
Thank you so much. Love and hugs Lynne xxxx
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