Pbc

[Ballymahon2]

I was told by my doctor i have pbc i have been sent for fibroscan

I have no symptoms but i am worried

[LindyRich]

Please see reply in you most recent post

[GrittyReads]

It's good if you don't have symptoms, and it is also good if your Medics are sending you for a fibroscan, it means they are being conscientious and fully checking how you are..

Can you tell us exactly what they have noticed that has caused them to think it may be PBC? Symptoms can be a guide to the sort of tests that should be done, so as to aid and speed up diagnosis, but they are not enough for a diagnosis - that has to be based on tests.

So, what blood tests have they done? If they think it is PBC then they should have done blood tests. For a formal diagnosis of PBC, most people have 'liver function tests' (lfts) that are higher than they should be - and in a pattern that is typical of PBC. And, they also usually have a blood autoimmune factor called AMA (usually sub-type AMA-M2). If both of these are present then that is usually enough for a diagnosis of PBC. If only one of these is present, then there will be further tests. It would help if you ask for a copy of your results, to find out what they do and don't know so far. The Fibroscan may be to help confirm a diagnosis, or - if they are sure of the PBC diagnosis - it may just be to check how the liver is looking.

However, as I and others have already said, it is good if you don't have symptoms; plus ... PBC is much better treated now: the medication is good and new advances are being made all the time. Try not to worry, as stress is the worst thing for autoimmune conditions. Treat yourself, have fun, do things you love and generally try to spoil yourself and de-stress.

Take care.

Hope this helps.

[Ballymahon2 in reply to GrittyReads]

Thanks for your help the doctor carried out blood tests i have decided to get a copy of these blood tests glad i am having fibroscan i dont have any symptoms i feel very well glad they have caught it early treatments are improving all the time which is great

[GrittyReads in reply to Ballymahon2]

That's good. When you get your test results you could post them on here and we can try to help. Or, better still ... contact the 'PBC Foundation' and talk to their advisors - link, at top of page, to their wonderful website with details of phone or email contacts. If you join - it's free - you will get a fantastic info pack with all the details of what to look out for, what the tests are, what the levels of Urso should be, etc. Plus, they have recently produced a guide for folk with PBC that is a synopsis of the new official guide which tells consultants what they should already know and do with regard to PBC and suspected PBC: what is correct for diagnoses, and what is the normal care system to follow, etc. . If your medics contradict what it says on your copy of the 'PBC F' synopsis guide, you can then show it to them and then refer them to the new fully detailed official guide for all PBC specialists.

You are in good company on here, though, so do come back with more questions, anytime. But do contact the PBC Foundation as they are wonderful.

Take care.

[Ballymahon2 in reply to GrittyReads]

Many thanks for all the good advice

[Ballymahon2 in reply to GrittyReads]

Its hard not to worry my doctor said he has one other patient with same condition as me and she is responding well to treatment are there many variations of this disease

[Ballymahon2 in reply to GrittyReads]

Gritty my doctor said i have biliary cirrhosis but its not coningitis its an autoimmune disease of the bile ducts it cant be treated with urso its treated with immune suppressents and steroid treatment have no symptoms yet apart ftom heartburn occasionally he says its an autoimune disease like crohns disease very confusing awaiting scan is it all under the umbrella of pvc

[GrittyReads in reply to Ballymahon2]

Hi Ballymohan2,

When you say Dr do you mean your GP, or the liver consultant? Also, are you in the UK?

Whatever this condition is, you should be seeing a consultant, and preferably a liver consultant (a heptologist - even better if it is one who is a PBC specialist) rather than a general gastrologist, who won't know enough about the varieties of liver issues in great detail. Most GPs never see anyone with PBC (or similar issues: there are 4 GPs in my practice and only one has had patients with PBC) and often they really don't know enough about it - certainly not the most recent developments.

I think you should talk to the advisors at the 'PBC Foundation' they host this site and the links to their wonderful website (top of this page) will give you phone and email links to talk to their advisors. They are lovely and helpful and the PBC website is wonderful - most stuff online is out-of-date and overly scary.

PBC used to stand for 'primary biliary cirrhosis'; however, the name was changed last year to 'primary biliary cholangitis', as most people with PBC do not, nowadays, ever progress to cirrhosis. 'Cirrhosis' just means scarring, and it is what happens to the liver when it is damaged by various methods. We mostly hear 'cirrhosis' in connection with excess alcohol consumption (another reason PBC patients were glad of the name change, was because if they said 'cirrhosis' most people - even nurses and some doctors - automatically assumed it was liver damage due to drinking!), but PBC has nothing to do with that.

PBC is, itself, an autoimmune condition, and it does cause damage to the biliary tubules. These are the millions of tiny micro-tubes that run throughout the liver, taking substances to be broken down to the liver cells, and then to remove both good things that are made in the liver cells, and any waste products. The autoimmune factor of PBC attacks the cells of the biliary tubules, and they break down, causing scarring and eventually meaning that the liver cannot remove stuff. All this takes a long time and the liver is also very good at repairing itself, but when damage is happening it does need to be treated. The actual bile tubes and ducts are much larger and it is not generally the large ones that are damaged. However, the scarring of the tiny tubules needs to be dealt with.

There are other liver conditions that are similar in effect to PBC, but if your Doctor is actually saying that it is 'PBC' then the first line of treatment is usually urso, with other drugs available if patients don't then respond to urso.

I could say more, but this is already over long. Please do talk to the people at the 'PBC Foundation' and also have a good read about on all of their website.

Maybe before you phone them, it would help if you ask your GP's receptionist for a printout of all the results of your tests. It is your right to have a copy, but you may have to pay, so ask first in case it is pricey - which it may be if they have to search for older results. I always get my results, and always ask straight away.

Sorry this is so long, I hope it helps. Try to take care of yourself, have some fun, do things you love to do and do anything to de-stress ... as it is the worst thing for such conditions.

Gritty

[Ballymahon2 in reply to GrittyReads]

Gritty thanks so much for advice will phone dr receptionist today and get them to send me blood results as soon as i get them i will contact foundation will be meeting liver consultant after my scan on 7th nov

Weird disease i have no symptoms at all feel really well

Thanks aine

[Ballymahon2 in reply to Ballymahon2]

Gritty got copy of blood results states primary biliary cirrhosis just feeling so scared and depressed

[Angel_b in reply to Ballymahon2]

Hi ballymahon2 have you joined the pbc foundation? I would really recommend reading the compendium on it. I felt like you until I understood more about it. Most important thing is stay away from google. A lot of the info is outdated and you don’t need the stress.

Sounds like your doctor/lab haven’t updated the name change but don’t worry about that. Pbc is a very slow progressing disease and many people don’t progress to cirrhosis. They say your more likely to die with pbc than from it. You’ll get a more accurate picture once you’ve had your fibroscan.

Most importantly try not to stress. Stress and autoimmune does not mix well. Be kind to yourself.

Best wishes

[Ballymahon2 in reply to Angel_b]

Thanks for advice just got depressed after i got diagnosis

[Angel_b in reply to Ballymahon2]

Yea it can be scary. It took me a while to get my head round it. But it does get better. Fingers crossed for a good result at your scan.

[Ballymahon2 in reply to Angel_b]

Thanks angel b

[FranSP in reply to GrittyReads]

Thank you GrittyReads,

Your posts are so helpful and encouraging and inspiring.

Thank you ,

FranSP

[GrittyReads in reply to FranSP]

Thank you!!

Gritty

[Elanie]

Hi , I also recently had a fibroscan, this was to confirm pbc as although I have fatigue I don't have any other symptoms and blood tests indicate pbc. The fibroscan was painless, confirmed pbc but gave me reassurance that not too much damage so far.

[gwillistexas in reply to Elanie]

I scored 8 on fibroscan. Dr says will repeat in one year & that will tell him if I’m progressing slow or fast. I’m totally confident with the fibroscan.

[Ballymahon2 in reply to Elanie]

Elaine my fibroscan didnt confirm pbc my hepatologist did more blood tests and these are inconclusive she has started me on urso and will get bloods checked in 2 months did your hep confirm pbc from fibroscan ?

[Elanie in reply to Ballymahon2]

Hi Ballymahon 2

At least you are on urso and your specialist is keeping a close eye on you. When I had my fibroscan I was told that PBC had not caused too much damage so far, so I took this as confirmation of my PBC dx which blood tests indicated.

Here's to a healthy new year. I've decided to retire in the summer so am looking forward to a much less stressed life and more fun in the sun😎

[Ballymahon2 in reply to Elanie]

Absolutely glad you are getting it sorted now my hepatoligist has been pro active just to let you know there is no big deal to taking urso i was nervous initially when i saw the long list of possibe side effects but so far i find it ok

[Ballymahon2]

Thats great elaine the fibroscan will reveal a lot

[kimphoebe]

Don't think fibroscan can dx pbc just sees how stiff the liver is. The liver can be stiff for a number of conditions. My last score was 16.3

[gwillistexas in reply to kimphoebe]

You’re right. Liver condition/stiffness.