Denise

[Dese]

I was told 6 weeks ago I have pbc not a clue what it was and the doctor told me nothing only that he could give me a biopsy but that could kill me and sent me of with some tablet. If it wasn't for The PBC Foundation I honestly wouldn't no where I would be now. I go back in 6 months but this time I will be asking the questions. I have 1 leaflet that I take around with me. That has been to doctors and hospital appointments trying to make people understand what we are going through.

[Hidden]

Hello Dese.

I gather if you've already been diagnosed with PBC then you are not in the UK as you mention having a liver biopsy. I am in the UK and started itching early 2010. I was fatigued at the time but didn't seem to think nothing of that. Was itching that took me to the GP. From there, blood checks after blood checks, scan and then I saw the hospital consultant later 2010. He took antibodies blood test that day and then before 2010 was out I was informed I had PBC at aged 46 and started taking urso.

I was never offered a biopsy as in the UK it's not the norm unless there is doubt as to a diagnosis. I had the factors that gave diagnosis. I wouldn't agree myself now to a biopsy as to me it's only a small part of the liver that is sampled and that wold be doubtful as to correlate with the whole liver. At the end of the day it wouldn't change the treatment either and there is apparently risk attached to a liver biopsy.

Given PBC is supposed to be slow progressive a doctor would more than likely not be alarmed going off the bloods if they were what the medical profession deemed to be quite fine for one with diagnosed PBC. My LFTs (liver function test) and GGT (this apparently gives some idea of liver inflammation) bloods have improved over time, still what is considered abnormal but not abnormally so to cause concern as yet. Fatigue for me vanished some point during 2011 and though I still have the itch, it is usually contained to later night and during the night.

I'd never heard of PBC until during 2010 when I was itching 24/7 and as more bloods were done to check for this and that (one to determine if a bone or liver problem, another for Wilson's Disease (copper overload), etc), I looked in a library reference book and stumbled across PBC and then looked online. Hoped I just had some temporary health glitch as never one for being sick and thought after changing a few things in my life it would all go away, then I got the diagnosis of PBC.

I live life for now, enjoy what I can as you never know what is round the corner. I refuse to think about what PBC could become as it might never be so which to me would be needless worrying meanwhile.

If you haven't already request the free dvd on PBC from Liver North, I'll post the link (though I think I posted on another posting that you were taking part in).

livernorth.org.uk/

[Dese in reply to Hidden]

I am in the UK I wasn't actually offered a biopsy the doctor said he could give me one but it could kill me was his words. I am on urso and my next appointment is in April. 2016

[Jowen in reply to Dese]

Hi Denise, I guess any type of invasive procedure can kill you, but I have had a biopsy and I can assure you it in no way came close to killing me. A biopsy might not be necessary but if you want to know more and have more certainty I felt that it was less painful and disagreeable than gastroscopy, which I find very unpleasant. The biopsy took a whole day and your clotting factor has to be good, but it was almost painless and to me it meant a lot really knowing it was PBC and nothing else that caused my health problems.

If there isn't anything very wrong with your clotting factors or some other aspect of your health I fail to see why the doctor believes the biopsy could kill you. Plenty of people have biopsies all the time, why does s/he think it could kill you?

But, of course you shouldn't have one unless you need to. I dare say that the treatment that is available to me would have been the same with or without biopsy. All it really did was to confirm the suspected diagnosis, but for me the confirmation was important. I don't drink and I have never used any substances that might affect the liver so I just couldn't believe there could be something wrong with my liver...

Ask for another doctor if the current one doesn't start explaining things more and better.

Good luck!

J

[Dese in reply to Jowen]

Hi jowen. I think he was just fobbing me off he didn't have any time for me at all. He didn't even tell me what the tablets was for. Like yourself I'm not a drinker never took drugs, He didn't ask me how if feeling. Thanks for the reply if I don't get the answers when I go back to the hospital than I will ask to see another doctor.

[finfeature in reply to Dese]

I, also, am I'm the UK. I was offered a liver biopsy when first diagnosed. (15 yrs ago) but opted not to have one. I was informed of the dangers and the fact that it would not change the diagnosis in any way, as I have the antibodies in my blood. I decided the risks outweighed the benefits and thinking that interference with my liver, in that way, may cause more problems than it solved.I started on urso and my blood levels improved to not far above normal. I avoid fatty foods (and alcohol) , or take my urso before eating a fatty meal, which is sometimes unavoidable. So far I have been very lucky. At one point I was given a 12 month prognosis, but I am still here 5 years later. Now I don't ask. It is my belief that no-one can give you an answer to that question in the early stages. From my experience, do not panic at the diagnosis, just enjoy whatever time you have...it could be many many years.

[teddybear7 in reply to Hidden]

I'm in the UK I had to fight to not have a biopsy. It depends where you are.

[Dese in reply to teddybear7]

That's true but I just think he was just fobbing me off saying that he could give me a biopsy but it may kill me I didn't ask for anything and I didn't know anything about this illness.

[teddybear7 in reply to Dese]

Well honey I think his choice of words were appalling. I too weren't told much I've learnt all my stuff from the foundation. Be lost without them. X

[Dese in reply to teddybear7]

That's how some doctors are I suppose. When I was walking out the nurse said have a look on Google that's how a found out more about this illness. Thank god for that because at one stag I thought I was going mad with the forgetness and being so tired wasn't myself

[Hidden in reply to teddybear7]

Hello teddybear7.

No biopsy was ever mentioned to me by the hospital consultant who does see PBC patients and gives talks on PBC to GPs. I am in the UK.

I think if you are diagnosed with PBC due to symptons (I took myself to the GP with 24/7 itching) and abnormal blood work plus have the AMA (antibodies) then that is the criteria apparently to diagnose. I know if I had been offered a biopsy following having a positive AMA test that diagnosed PBC I'd not have accepted myself. A doctor would have had to give me a satisfactory reason in wanting to obtain a sample.

It was my GP on seeing him when he was asked to prescribe urso and inform me that I had PBC by the consultant who seemed surprised that I'd not been asked to have a liver biopsy. I recall telling him that I hadn't and I wouldn't anyway.

I know my view still stands that I have PBC and a biopsy is not going to alter anything. It is said to give some stage but I am not interested and moreso due to the fact that the biopsy site isn't the whole picture of the liver as I'm sure you and a lot on here will agree.

I also think that in having a biopsy just for staging, there is going to be some small damage on the liver at the site and to me it wouldn't be acceptable once PBC diagnosed. Like a lot of invasive hospital tests, parts of the body then have to recover from the trauma and it's not something I'd want in the case of myself.

[finfeature in reply to Hidden]

I am in total agreement with Peridot. I refused a biopsy and am still here 15 years after diagnosis. It has made no difference to me. I still have the antibodies, still have Pbc. Still cannot see the point.

[donna01 in reply to finfeature]

I too have refused a biopsy. I live in the US and they are hell bent on doing a biopsy. I keep changing doctors, as every single one of them want a piece of my liver. I have absolutely no symptoms of PBC other than the elevated liver enzymes and M2 marker. This all started after gall bladder removal. Liver enzymes were normal the month before the gall bladder removal. I told the last doctor that my liver is already aggravated and a biopsy will aggravate it some more and will in NO way cure me and could possibly make things worse. It is so frustrating!

[teddybear7 in reply to Hidden]

I think it depends where you are in the UK. It was hospital consultant who wanted a biopsy. I said it wasn't necessary due to the AMA's etc & eventually won my case when a higher consultant agreed with me. I still haven't had one & still don't believe they make any difference. X

[IOW-gal]

Hello Dese

I was diagnosed in 2011. Unlike you I have had a very understanding GP who, because he suspected something may be wrong, referred me to a specialist gastroenterologist. She has been brilliant. I was immediately put on Urso. I have also had three gastroscophys, checking for varies - showed nothing. I also had a liver biopsy which I found to be a painless procedure. As a previous person said no invasive procedure is without risk. This was not forced upon me but as my specialist thought it would be helpful I agreed. I do believe where you live in the UK has a bearing on your treatment, it shouldn't, but as with a lot of things it does. I live on the IOW. Don't read too much of the garbage that is out on the Internet. It is usually well past its sell by date! Good luck Eileen

[Dese in reply to IOW-gal]

Thank you

[Calogia]

Hello Dese - I was told I had PBC in 2012. My doctor sent me to the hospital to get a biopsy in order to stage the disease. I was Stage IV. People will tell you that it might be just a small area that is stage IV but that means that small area is closer to becoming cirrhotic and cancerous. That will mean you have to have bloodwork every 3 months and Ultrasounds and MRI's every 3-6 months. I see no benefit in not knowing what stage you are in. It is a closer surveillance of your liver than if you weren't biopsied.

There are risks to every procedure as Dese has said but I feel more comfortable knowing what I'm facing than not knowing.

Good luck to you !

Calogia

[Dese in reply to Calogia]

Thank you

[GrittyReads]

Talk to the PBC Foundation. They host this site. There is a link to their website at the top of this page; it will lead you to all email and phone details - as well as to all their on-site info on PBC - and you can get in touch and talk to one of their trained advisors.

Also, you have a 'right' to see all the notes, blood test results, and any letters from consultants. Ask for copies at your GP reception, they may ask for a small charge for photocopying, but mine don't.

[Older stuff and details of consultations with the GP may cost more, as they have to search and copy etc.]

I'm assuming your GP sent you to see a consultant (sorry I'm rushing and I have not read all of the other comments and your replies). If not, see another GP in the practice.

To be diagnosed with PBC - formally/medically (to comply with UK/Eu/USA diagnostic standards) you need to have two out of three of the following 'diagnostic criteria' :

1 Have abnormal liver functions tests (blood tests) consistent with PBC, and/or:

2 Test positive for 'antimitochondrial antibodies' (AMAs), and/or:

3 Have a biopsy that shows liver damage consistent with PBC.

The biopsy is the main thing, but is often not done as the presence of the other 2 criteria (especially with symptoms) is usually enough to diagnose PBC.

If you only have AMAs, that is not enough to diagnose you with PBC. Some people just have the antibody ... I do, I've had it for over 23 years and I do not have PBC! However, you do have to have blood tests every year, as PBC can develop.

[NB these 'diagnostic criteria' are not 'symptoms' ... the most common symptoms of PBC are: fatigue, severe itching, and it's also quite common to have aching joints/muscles ... and also, often, to have other autoimmune conditions, such as thyroid problems, lupus, sjorgrens syndrome (dry eyes) ...

Your GP should have tested you for lots of these other common autoimmune conditions, as people with PBC often have some of these other problems - my GP tested me for everything !! Also, if you have some of the symptoms, he should also have checked you for other conditions that cause similar symptoms.

Talk to the PBC Foundation / get your results / maybe see another GP in the practice, but go armed with all the info first, and perhaps take someone with you - get them clued up, too!

Good luck, I hope you get more satisfactory info.

Gritty x

[Dese in reply to GrittyReads]

Thank you

[bobbycat]

Seen this post rather late but in the UK you now can have a fibroscan if your lfts are quite high   as mine are. It is a simple and painless fifteen minutes. It showed  I had cirrohisis but having had PBC for mOre than 20 years it was expected but a shock all the same. It is as good as a boposy and i  ways much better.

I wish I had had the chance to take medication earlier as this would have helped.