My life

[My-life]

My doctor told me they do not do bi-opsies on the liver becouse differnt areas of the liver can give out differnt readings. I have tried B12 to help with energy but it doesnt realy help. Im 61 and very tired all the time. Any suggestions on getting more strength back. I use to be a very active person. Now i dont have half the energy I did.

[sylviaj]

Before I was diagnosed and didn’t know why I was so tired, I started I taking vitamin D, a multi vitamin with iron and omega 3 oils, these seemed to have really helped and since diagnosis my liver specialists said that was a good decision and would be helping. Might be worth a try.

[My-life in reply to sylviaj]

Thank you.

[kristieerhodes]

Some doctors don’t do them for that reason but others do because it still can give them staging information. I have had 3 since 2005.

[My-life]

Yes my doctor. I think i need a new one. He doesnt have a wealth of information for me.

[Biddyb in reply to My-life]

You make be need to see an Hepatologist if you can get a referral to help with diagnosis I had one in 2015 but the results were inconclusive LFT bloods should help with diagnosis but if your GP isn't up to spec you may need a second opinion keep trying and don't give in you have aright to know what is wrong good luck

[GrittyReads]

Have you actually been diagnosed with PBC?

If you have been fully diagnosed as a result of abnormal liver function / blood tests, plus having the autoimmune factor AMA-M2 present, then there is no huge need for a liver biopsy .... so long as you are being given the correct dosage of Urso, etc for your weight and other factors. However, if you have not been fully diagnosed, then (as far as I am aware) a liver biopsy is still the third line of action for diagnosis.

If you have been firmly diagnosed without a liver biopsy, but are interested in having one, I believe they are not generally done just for staging the level of PBC, unless there is some concern about your response to the treatment or they are worried about what stage you are at.

I would talk to the advisors at 'The PBC Foundation' who 'host' this site here on 'Health Unlocked'. There is a link to their site at the top of this page, where you will find phone and email links to contact their lovely trained advisors, as well as loads of info and advice on the site about PBC.

Hope this helps, take care

[My-life]

Thank you. I will keep this i have an appt in March... I think i need another Dr. I have asked for my numbers so I can keep track. He just tells me they are low. I did have an ultrasonic and it was just a little over size. Blessings.

[Biddyb in reply to My-life]

Your GP should be able to print out all your ALT and ALP plus other readings he doesn't sound very helpful. You have a right to these results even if they are low, which begs the question that needs answering WHAT is wrong. The British Liver Trust and PBC foundation are really helpful give them a call

[Cfay]

You are entitled to copies of your records and lab results. I was diagnosed PBC in 2013 while being treated for diverticulitis and labs showed abnormally high liver counts. I postponed the biopsy til last fall even though gastro recommended it. They took 2 samples from different angles as it's not unusual for damage to be at more than one stage dependent on location; mine showed stages 1&2. I also now take Ocaliva in addition to Urso and knowing the stage progression is imperative. As a psychologist and health coach, I believe an informed client/patient is best able assist in determining courses of action for their best welfare.

[My-life in reply to Cfay]

Yes I agree. Im on ursol. I had cancer at the same time found PBC. Cancer is gone. I have worked hard all my life and now tired. I dont think he understands how hard it is to change your life. I was a medical assistant so I have worked with drs. And I know I need a different one. Blesssings

[My-life in reply to Cfay]

Thank you. I saw you where in therapist. That is part of the proublem. When doctors find out about your depression ( not all doctors) they tend to treat you as you are not as worth the time. Bless you so much for caring and sharing. God Bless you.