Newbie

[Marielena2]

Hi guys. I.m a newbie and I was diagnosed with PBC in March 2020 .and have had liver scans and blood tests but have not seen a consultant. They said they were pleased with my tests. But that's all!! Should I be having treatment?? Or just the regular scans? I.m confused and a little scared to be honest. Have I slipped through the net? Or is this normal to not be treated until its necessary. My gp has explained nothing .

[gwillistexas]

Oh my! I’m sure others will comment, but you definitely should see a specialist. I would want to see all test results and you are entitled to those. Do you have a patient portal? If your GP diagnosed you with PBC, you should be on treatment.

[Marielena2 in reply to gwillistexas]

Thankyou so much. I will certainly speak with my GP.

[butterflyEi]

Hi Marielena2

In the UK you are entitled to have a copy of your blood test results. From those test results you will be able to see which blood tests are outside of the parameters and then you can discuss that with the GP.

It is the wisdom from Prof. Jones, OBE who is a specialist in the field of PBC that once you have received a diagnosis of PBC then URSOdeoxycholic Acid is the medication to be prescribed to give you the best outcome. IMO it is best to see a specialist so that they can monitor the first year of taking URSO but of course COVID has impacted greatly on the NHS system although things, I believe, are easing.

On the PBC Foundation web site (free to subscribe) there is a link to a leaflet for the medical professionals. They can send it to you or you can download it and have it with you when you see the doctor.

I was not seen by a professional for over 5 years, just dealt with by the GP, then a retiring GP I had a consultation with just before they left the surgery said "people like you should be seen by the specialist".

May I suggest that you gather the information from the PBC Foundation web site and get a copy of your blood tests. This gives you the opportunity to write down some questions which you can then ask your doctor about either in person or over the telephone. For me I like the distance of speaking to medical people over the telephone, I don't find it quite so intimidating but others much prefer face to face appointments.

The PBC Foundation also have a help line.

Also on a Thursday afternoon at 1400 hours UK time on FaceBook there is an hour of medical expertise, often this is an open Q&A with specialists, questions can be emailed to the Foundation prior to the presentation.

best wishes

[Marielena2 in reply to butterflyEi]

Thankyou so much ,I will follow your advice and get more info. Very much appreciated.

[Sandpiperx]

Hi, you should definitely ask for referral to specialist. My bloods were being checked in 2001 after surgery to remove lymph nodes. Doc told me to watch my red wine consumption as levels were slightly raised. I had to ask for a referral eventually as the bloods over the next few years kept going up and up. I was diagnosed with PBC and AIH. Your specialist can do so much more for you and you deserve that.

[Marielena2 in reply to Sandpiperx]

Thankyou.x

[ninjagirlwebb]

Once diagnosed with pbc, you need to be on ursodiol prescribed based on your weight. I am in the US and I see my hepatologist (liver specialist) every 3 months to get my labs done. He monitors me.

Other tests besides blood work, the hepatologist has ordered for me:

Bone Density Scan

Fibroscan

Abdomen sonogram

Some folks get their labs monitored by a primary care doctor or GI, but if you have access to a hepatologist, probably should be monitored by them as pbc is rare and you want an expert to manage it for you. A primary care doctor might not know to order a bone density, sonogram or fibroscan for you especially if you are young since bone density is done only for older people. But pbc patients are more prone towards osteoporosis and also may have issues with vitamin absorption. Regular doctors might not know this.

[Marielena2 in reply to ninjagirlwebb]

Thankyou so much for your advice.

[GrittyReads]

You need to get a copy of all blood (etc.) tests that have been done, plus all comments made so far - and then find out, exactly, on what basis you have been diagnosed with PBC.

Things have changed - and improved - vastly over the years, but back in the (???) late 90's - after some blood tests - I was told I had PBC by my GP - when I don't have PBC at all.

This was just based on the fact that I tested +ve for AMAs (antimitochondrial antibodies). These are just one of the markers that can indicate PBC, but PBC cannot be diagnosed in a person just on the basis of AMAs! ( NB Blood donor statistics show that about 8% of the population test +ve for AMAs, but only a small fraction of that group do actually have PBC.)

Two factors always need to be present for a formal diagnosis of PBC.

For a +ve test of PBC you need any two of:

1) AMAs: and/or:

2) a liver biopsy that shows damage typical of PBC; and/or:

3) abnormal blood tests (lfts = liver function tests) that show raised levels of chemicals that are the markers for PBC.

You should ask to see all your results, and then go through them with your GP (or talk to the people at the 'PBC Foundation') . You need detailed information on why you have been diagnosed and what the findings are, as that dictates how you should be treated, what tests need to be done, and what ongoing treatment you need to be taking. But do please talk to the 'PBC Foundation' - see the links on the right.

[Kakey]

If you're in the U.K. and were diagnosed by your GP the GP should have referred you to a specialist. The consultant will then prescribe the Urso, the med for PBC.

I am in the U.K. and was diagnosed April 2020. I was diagnosed after liver biopsy, so was already under a consultant. I was prescribed Urso, but I haven't really had any contact from them since. I had to chase the consultant for about a month to get my dosage changed and to check my response to the medicine. So I've had more treatment and contact than you, but I still feel like I've been badly let down by the system and the situation we're all in.

Honestly, you've been (un)treated very badly. The PBC Foundation will help you, if your talk with your GP isn't helpful.

Good luck x

[Tcmb50]

Hi, Sorry you are feeling worried about your situation and I completely understand . I found out I have positive AMA's recently and my brother has already been diagnosed with PBC. My doctor seemed out of her depth trying to answer my questions and told me they would do a liver function test and I would be referred to a specialist. They contacted me to tell me the liver function test was normal. I was told the consultant hepatologist appointment would take about a month. I decided to see a hepatologist privately which happened within days and cost £160. It is very expensive but as I was off on furlow and not spending money on petrol orsocialising as we were in lockdown, I thought it was worth it. He was very knowledgeable about PBC and answered all my questions.. He told me his NHS practice was basically shut down except over the telephone. I'm sure if you contact your doctor, you will find out where you stand with your consultant appointment. They are probably doing face to face appointments now and still catching up. Good luck with everything.

[Marielena2 in reply to Tcmb50]

Thankyou so much, all this information has been very helpful.xx