I was diagnosed two and a half years ago with PBC (doctor told me over the phone!) - by positive AMA and I saw a gastro about 2 months later. I was not given another appointment with the gastro for a check up (say six or twelve months later). I did not have a biopsy or a scan. My test results are in range - slightly elevated ALK - but I eat an exemplery diet. Gluten and grain free, lots of vegetables and salad, bit of fruit - apples and berries, eggs, meat, chicken, fish. I do eat dairy - milk, yoghurt. I cook from scratch and do not eat ANY prepared, take-away or junk food, sugar. I also have Hashi, Addisons, Celiac, Myasthenia Gravis - these are the ones I know about!!!
Should I insist on another appointment with the gastro and ask for a biopsy and/or scan? I would like to know how much damage has been done to my liver.
Written by
swmartin
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I can only tell you my understanding of the investigation process. You'd get much better information from PBC Foundation (pbcfoundation.org.uk) or, if you have a good gp or gastro doc, from one of them. At the very least they should be able to explain to you why they have decided not to do a scan or a biopsy.
My understanding of the process of diagnosis (here in Ireland at least) is that a biopsy isnt considered necessary for diagnosis. You can be diagnosed with probable PBC with the presence of AMA and elevated liver enzymes. They often don't do biopsy or scan because they are unreliable.
A scan doesn't give the docs information about the extent of damage done by PBC. I had a scan but the purpose (I was told) was to rule out other causes (eg gallstones) for my elevated liver enzymes. It doesn't show the bile ducts so it can't tell you if there is damage there
The problem with biopsy is that it only shows the parts of the liver where the needle goes in. PBC doesn't affect the liver in a uniform way so you would have some healthy liver and some damaged liver. It's possible for the needle to miss the damaged part or perhaps to hit the only (maybe small) damaged part.
The PBC foundation site has a lot of useful information on it and they can help you with additional information if you want it.
Well done for having such a healthy diet, they certainly can't accuse you of not trying to keep yourself healthy. Keep it up.
Were you put on URSO medication by the gastro as that is the only treatment out there for treating PBC, it helps slow down the progression of the disease?
Does your Dr regularly check your bloods? If your not being seen by your gastro your Dr should be checking on you. I see the Gastro consultant once a year and have blood tests done the week before my appointment. I mentioned to my GP that maybe I should have regular blood tests done at the surgery as no one is keeping an eye on my levels during the year and was told regular blood tests were not necessary unless I was unwell. I commented that I had read on this site of others who were having blood tests every 3 - 6 months and was then told 'they must be more poorly than you'.
As for having scans or biopsy...I had both as that is what my gastro wanted. He told me the scans were to check if the problem was just contained within the liver and to check on the gall bladder etc and the biopsy was to confirm the extent of damage to the liver.
Sorry you're not seemingly having blood tests at reasonable lapses in time.
I got a copy of the letter the hospital consult sent to my GP when I asked him to discharge me in Oct 2011 as I felt I was just trekking to the hospital for what could be done at the surgery. He decided to agree with on discharge but said he'd deem it as on-going with the mention that in future if anything changed I would go back so I agreed if the time arose...
In his copy to the GP he stated that he requests blood checks every 6 months. I did actually have them done every 3 months last year as Feb 2012 they were starting to climb slowly tho' not too badly. Then May 2012 they came right down to be deemed good but then Oct 2012 they were slowly elevating again. I started back on milk thistle that I had experimented with myself during Feb and May's bloods and given May's were good, started on milk thistle again Dec 2012 and got fantastic results Feb just gone. Prob be 6mths before I go to the GP for the repeats as he is very vague and on Feb comments he didn't actually state when to go for the next ones so I'll go when I next get round unless I'm asked at the med review at some point in the next couple mths when I will ask.
I am seeing my gastro consultant in may/june so I will ask him how often I need these checks because I am getting no where with my GP. All my GP is doing is providing me with my repeat scripts and an annual med review, they do not interfere with the URSO only the painkillers, omeprazole and calcium.
I started with a scan of the liver and surrounding areas prior to having my first hospital consult appt later 2010.
My bloods were elevated and climbing slowly during that yr.
After the scan I was informed by the hospital consult that it was looking quite normal from the scan but the bloods were stating there was 'a bit of inflammation'. I had the AMA blood test taken and 2 months later in Dec 2010 I was diagnosed with PBC. Started urso Dec 2010.
All I can think from what you have put here is that maybe your bloods aren't in a range that warrants having urso at present? But not being a medic I can't answer that of course but it does seem or appear a likely explanation.
I'd expect if you have AMAs as you have stated then you'd have repeat bloods at intervals? If not I'd ask your doctor if you can have a repeat of them, that might just start the ball rolling again?
It was my GP who sanctioned the scan before making me an appt to see the hosp consult. It is the hospital consult apparently who would sanction a biopsy as I understand. I believe the first line is the scan prior to any biopsy if it is recommended. I've never had a biopsy and wouldn't deem one for me given my results and symptons of which are really only the itch (what I started with in the first place).
A biopsy is normally advised if a hospital consult isn't certain about something here in England. I know in the US it seems standard to have a biopsy even after you've had a diagnose of PBC through the AMA.
I personally can't see the point as SC49 has stated, there has been questions about what part of the liver is showing as what due to the biopsy site. I also think that for myself anyway, to put myself through what could be an unnecessary biopsy and then for that part of the liver to have to reheal itself after being punctured with a large needle, it's not what I would personally want/do.
I do think that bloods are a pretty good way of giving some indication as to how PBC is progressing along with any developing symptons along the way (if any).
I have had two liver biopsies both of which were inconclusive, my consultant has since told me that it is no longer recommended. Blood tests are more reliable, also a liver enzyme scan which at the moment we have been told can only be carried out in London could give a more definitive diagnosis, I am on the list for this procedure and will keep you all posted.
With having an illness like PBC, Im afraid it often falls to the patient to make sure they get the treatment they want. I dont know your situation with bloods etc but you could contact the PBC Foundation to discuss. If you are not happy with your doctors you can always get a second opinion. For myself I have bloods every 6mths as routine and an US scan every three years but Im always encountering little PBC problems along the way.
Good luck and I hope you get what you want.
I have had a biopsy and three ultrasound scans ( 12 months apart) so far and now have bloods done every 6 months. My gastro and GP said a Biopsy needed to be done to confirm it. How they all have different opinions! I also had a MRI on my liver first.
I am in the US and was diagnosed a year ago. I am not on URSO and refused a biopsy because of what I have read here but mostly because there is no other treatment besides URSO. If a biopsy would indicate other treatment that would be different. It is true that biopsy is usually done in this country,
I like your stance on how you are dealing with diagnose dinnyd.
Like yourself once I had the diagnose of PBC which mine was done as you'll probably have already read on here by AMA blood test, I had no intentions of any biopsy if it had even have been mentioned. My GP at the time reckoned I would be offered a biopsy by the hospital consultant so I asked him why! It has never been mentioned.
A good liver specialist will NOT suggest a biopsy unless there is concern about also having autoimmune hepatitis. Staging of the disease is done by Fibroscan. Might I suggest you look for a doctor who will prescribe Urso without the liver biopsy. Seems like only gastro doctors want to do the biopsy when it is really not necessary. Good luck.
Thank you Peridot. For some reason, the doctors here think you can evaluate the stage with a biopsy. However, from what I have read one would need to take several samples to get an accurate read, and there is no crossroad at the end of that test. Treatment would not change.
Thank you everyone for your replies and advice. It's also great to know that you're not alone. Being on the NHS here in the UK sure makes life interesting / frustrating. I will phone the PBC Foundation and also speak to my GP who I am seeing next week. I will ask her about a referral to Kings College (?) (will need to do some research on that).
I was diagnosed also 2 and half years ago with pbc, I don't want to know, how much damage has been done, because I need to keep some smile on my face. The labs (once or twice a year) show so small connection with how do I feel, that it seems to me unnececery. I want to know about all this, for this I know what to change compared to my previous life when I was healthy, but there are so many nice informations about other autoimmune sicknesses, for me that's enough. Today I was told I have myasthenia gravis, few months ago polyneiropathy, in the meantime strong heart disorders...
I'd like to ask YOu about myasthenia. How are YOu with this?
Please, try to ask for lab test 1-2 per year, just if any sudden big change! Be well
By "scan" are you referring to an ultra sound or a fibroscan? I suggest that a fibroscan is better than a biopsy to measure the elasticity of the liver - to tell you how damaged your liver might be.
WOW - am I impressed by how well you are taking care of yourself with diet.
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I have an excellent gastroenterologist but should I be asking to be referred to a liver specialist?
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