Hi received my letter from the consultant - Primary Biliary Cirrosis! instead of Primary Biliary Cholangitis. I was horrified to find the name changed in 2016 and not sure I have much faith in his approach. At no point does it mention Cholangitis, I have a Fib4 score of 5.34 no idea what that means. I called my GP and she paused and then admitted she didn't really know as she wasn't familiar with Primary Biliary Cirrosis. In the letter he also stated I was very overweight current BMI is 28 - Yes I do need to loose 10 lbs. I have had an endoscopy to look for varices which did not go well! My blood pressure shot through the roof and am now on Betablockers! I have a fibroscan on Monday - will that tell me more? I know the disease is rare but I can't believe the total lack of knowledge that I am dealing with. Goggle makes it sound VERY frightening. Is there anyone out there who lives in Somerset (UK)
Letter from Hep Consultant PBC: Hi received... - PBC Foundation
Letter from Hep Consultant PBC
Fibroscan measures the elasticity of your liver using shear sound waves. Your doctor should explain its use and results with you. There is a scale to assess the measurements and it is different for each type of liver issue. That is what my doctor did, explain the technology, pulled up the charts and let me see how the scales work and then discuss my results in that context.
I am in the US and my hepatologist is really informed about pbc and is patient enough to explain everything to me. He reviews the scan with me right after it is completed too.
Perhaps you can find a doctor you have more confidence in.
Sorry you are talking to an idiot hep consultant. You need to change him for someone descent.
They are the same autoimmune disease just different name. I think changing the name did us no favour but what the heck.
It sounds like you have stage 4 liver disease through PBC. I have the same.
It’s not a rare disease but instead a disease that is being ignored. General MacCarther had PBC.
A lot of people who have PBC had doctors implying alcohol - but they hardly or did not drink. Think how many people being diagnosed with alcohol related liver disease because of ignorance of medical profession.
So they can call all the other liver diseases rare because they don’t care.
I had a consultant telling me I had fatty liver, going through the menopause and to man up. Soon as I got home I wrote a letter of complaint and said I refuse to see her.
Yes I am blunt about the bad doctors …… my ex-doctors did not read my many blood results and hence did not tell me I had high LFT’s for years. So yep, stage 4 liver disease. The hospital and doctor have altered their paperwork to lie to protect themselves.
I have almost died twice because they did not read my blood results. I have been shouted at, I had unnecessary surgery, I am just shocked how the bad doctors seem to get away with murder and my story makes a lot of people cry including me.
Yes there are brilliant doctors and my straight comment, get one of them. Research and make sure you get the right one.
You have a chronic illness. You need the right treatment and support. You don’t need rubbish.
Look after yourself and I hope your family and friends are there to support you.
Hi, I live in Gloucestershire so not too far away from you. Please join the PBC foundation if you haven’t already, they are a great source of information and support, in fact without the information they give I think I would pretty much still be in the dark with regards to PBC. It goes without saying, don’t Google there’s all sorts of out of date/inaccurate information on there.
It’s a real shame that your consultant hasn’t caught up with recent developments in PBC, you are well within your rights to look for another consultant. I was given my diagnosis by my obstetrician (I was pregnant at the time) and she also called it primary biliary cirrhosis, I forgive her as it’s not her area of expertise, but she hadn’t heard of it since medical school 30+ years ago which didn’t exactly put me at ease, all she said to me was “whatever you do, do not google!”My GP doesn’t know anything about PBC other than what she can read on the NHS website so I never see my GP about PBC related things, I always contact my consultant who I speak to twice a year.
Have you started on Urso yet?
I’m sorry that your endoscopy didn’t go well, I’ve never had one so I don’t have experience of it, I hope the beta blockers are helping with the high blood pressure?
I had a fibroscan about 5 months after I was diagnosed in 2018 and am awaiting another now. It’s a quick and painless procedure, it is a bit like an ultrasound but there’s no gel and it feels like someone is flicking your side. The result tells you two things, the amount of fatty change (steatosis) and the amount of fibrosis (scarring) in your liver and there will be a score for each, I wasn’t told my steatosis score as the fibrosis score is more relevant to PBC, once you have your score at some point someone (for me it was my consultant) should explain what it means for you, and it’s good to have a baseline figure when you are first diagnosed to compare later results to.
It is a common rare disease, and as such you aren’t likely to personally know anyone who has it, I certainly don’t, which can make it very lonely. In a way you have to be your own advocate, learn about PBC, know your test results, and push for the care you should be receiving from your consultant, again the PBC Foundation can help with all of this.
The PBC Foundation may run a group in Somerset where you can meet other people with PBC in the county, you’ll need to check with them though, there’s definitely a group for Gloucestershire although I haven’t yet taken part in anything due to work and childcare responsibilities!
Feel free to contact me for anything x
Thank you for your support - this is a difficult road we travel along. My fibroscan (19 KPA) was not a good outcome and I know now that I appear to have stage 4 fibrosis - yes I am on URSO but not sure what impact this could have now as so much damage has been done. I'm not sure what the future holds for us or how long I will have. Going to try and eat well, keep fit and stay as positive as I can.
You will be fine. If you respond to urso, it will slow the progress. Urso will reduce the inflammation and the liver does heal itself too. My hepatologist explained it this way: if you hurt yourself and it bleeds...and every time your skin is about to heal, the inflammation keeps chaffing at it as if you keep rubbing the wound so it is scarred. But urso reduces the production of harmful bile and kind of coats your liver and protects it giving it a chance to be less inflamed.
Thank you the positively helps so much. Where do you find all your great consultants? Mine said it looks like PBC you will need URSO for the rest of your life. I will organise a fibroscan and see you in 6 months. It was a 5 minute meeting!!! If it wadnt for Dr Google I would not have a clue.
I am in the US and my primary care doctor recommended my hepatologist who was head of the hepatology dept at the hospital they were affiliated with.
So it sort of just happened. Maybe ask the pbc foundation if they have a list of specialists they recommend at your locale.
Keep positive. Stress is not good for pbc!
Thank you. It is a tough one. I am learning that in the UK you need to fight every step. Im sure its the same everywhere.
As the others have suggested join the PBC Foundation, they have a help line and may be able togive you the name of a hepatologist in your area. They may have a support group that you can join locally. I am sharing a link below of how to prepare yourself for a fibroscan (it does not hurt) written by the team at Guy's and St. Thomas. I had one done for a research study but I was sitting up for it and it was performed by the professor of the study so I cannot really say how it will work for you.
Please do not Google, very out dated and unreliable information if you get onto an old page especially. The PBC Foundation has up to date accurate information. They have an app which helps you track your condition. I suspect if you contact them they have ways of politely making a specialist aware of his/her incorrect use of terminology.
The PBC Foundation also hold a Q&A with Professors on a Thursday afternoon at 1400 hours. Details of which are on their website.
Keep coming back here to us, we are a great bunch of people happy to share and care.
guysandstthomas.nhs.uk/reso...
Thank you for your support and the link.
Hi Sezzey.I had the same issue - my first letter after being referred for tests wrongly called PBC Primary Biliary Cirrhosis. I came home from work on a Friday evening to find the letter, so you can imagine how shocked I was. Like you I googled it and found it hadn't been called cirrhosis for a number of years as most people with PBC don't have cirrhosis, so it didn't fill me with confidence. She also said there was no treatment !!! Thankfully I found the PBC Foundation and there was a meeting the following week in Gloucester which I attended. I knew from the PBC Foundation information that there was a treatment and it was standard that everyone is prescribed Ursodeoxycholic Acid at least initially.
When I had my next check up I saw a Consultant and he read through my notes on the computer and his eyes nearly popped out his head when he saw the letter I'd been sent. He apologised that I'd wrongly been informed I had cirrhosis and that there was no treatment, and he left the room to go and talk to one of the other consultants. (The letter had been written by a registrar but he said she had been at the end of her placement with them when she wrote the letter so he was shocked by her lack of knowledge - especially for someone training to specialise in the area!.) He dictated a letter to the head of the department while I was there as he felt it needed raising with those who had been mentoring/training her.)
That was about 20 months ago - and I've been on Urso since about Dec 2019 and so far it seems to be working. I had another fibroscan a few months ago and that seemed to have improved - though that may be because I wasn't told not to eat before my first scan! Anyway the elasticity is okay so that was good news. The registrar had also arranged for me to have a biopsy - which probably wasn't necessary!
Do join the PBC Foundation. There is lots of information and they have online talks every week and if you are on Facebook they do something on a Friday night (I'm not on facebook so can't comment on that.) Once you join them (and it's free) you'll get sent the information about the weekly talks and if there are any groups in your area. There is one in Bristol but I don't know about Somerset - but you have just missed an online meeting of the Bristol group.
The fibroscan doesn't hurt and is non invasive and doesn't take long.
As it's a rare condition most GPs don't know much about it, they may only have one other patient with the condition.
The consultants I've spoken with since have all been knowledgeable - though I've had 2 in person and 2 phone consultations since the diagnosis and I've had a different consultant each time.
Thank you. I am so glad things have turned out well for you and wish you all the luck in the world.
Hi sezzey
Hope you are feeling better by now and that you have contacted the PBC Foundation. You can get really helpful leaflets from the and shove them in your consultants face!! PBC is one of those illnesses that we just get on with, but there is no need to be in the dark about anything. You can get help from here and the Foundation and there are some amazing medics in this country only to happy to share information with you as well as plenty of people only too willing to tell you their experiences and how they cope with difficult spells. Just remember that you are not on your own and that every time you ask a question it’s not only you who gets to hear the answer. Lots of us benefit! Stay positive, you will be fine.
Thank you. Feeling a bit scared right now. Now a great Fibroscan result. 19 KPA. I don't want to die and this feels like end game.
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