Early pbc

[Joelphine]

Hi i was diagnosed with suspected early pcb 2years ago,my doctor feels its too early in the desease to suffer symptoms!the trouble is i have been suffering with severe fatigue for many years and all over aching this has become increasingly worse! I also suffer from controlled hypothyroidism! And depression! doe's anyone think this is caused by my pbc?

[Hidden]

Hello Joelphine.

Well I think your doctor could be wrong. I was diagnosed with PBC back in Dec 2010 after starting to itch March that year. At the time I had fatigue but never thought anything of it due to working more than full-time hours for months on end.

Apparently PBC can cause some to have the odd sympton, others none (asymptomatic) and also normal or abnormal LFTs (liver function test) and GGT bloods. Seems that we all vary with PBC whether we be diagnosed when we present with one or more symptons or even if it is found by other investigations and we at the time are not aware of it.

It is true that fatigue can be caused by varioius other health problems/conditions but in PBC fatigue is one of the commonest symptons along with itching. (I have the itch still even on urso for 4 and half years. For me fatigue vanished the year following diagnosis at some point. I do get tired often though due to broken sleep caused by the itch.)

I know when one is taking urso for diagnosed PBC if it seems to fit the criteria to take it (appears urso tends to be started when one has either symptons or abnormal bloods), regardless of the bloods returning to normal the common symptons can still be present. Urso is said not to have much of an effect on someone with fatigue or itching. For me the itch has persisted even on urso though it has altered somewhat and it isn't as bad as it used to be.

There is an article on ursodeoxycholic acid in the latest Bear Facts from PBC Foundation (if a member they can email it as I receive it these days) and that covers a bit about fatigue but not much I noticed. I seem to remember in back issue of Bear Facts there was a chapter on Fatigue in PBC but if a member you can look at those online now on the Foundation website.

[Joelphine in reply to Hidden]

Hi thank you for your reply,i have been prescribed ur,watever but stopped using after a year as didnt think it made any difference!! I had a fibroscan which showed slight liver desease but liver tests are fine.also had iron fusion 2years ago but made no difference to fatigue! Have periodic itching but not all the time.also had low vit d but med still made no difference! Do find it hard to sleep cause cause of ache in left side of abdomen and joint pain! Finding it all to debilitating and finding it hard to get answers from doc's.been having probs with esa and pip and find it impossible to work,but no one seems to take any notice to what I'm saying!! Just needed some advise. Thank you.

[Hidden in reply to Joelphine]

Hello again Joelphine.

I am in the UK and recently I have been sunning myself for my lunchbreak so as to top up Vit D levels that we can lack with having PBC.

Never had been a sun lover and was found to have on the line Vit D levels a few years ago so utilise the sun now when I can. Later testing proved it was working.

Yesterday I had my repeat bloods at the GP surgery and was saying to the nurse I had been out in the sun in recent weeks to top up Vit D. She said that there are a lot taking Vit D supplements these days and added that it can cause aching if you are lacking.

Since 2010 when I was diagnosed with PBC the only supplement I've been prescribed by a doctor was a month course of iron tablets (2yrs ago nearly) as it was found I was a 'bit low'.

I've not experienced the pain in the side as yet but I know a lot on this site do mention it.

Hopefully someone else can add further for you.

[badpiglet]

Hi Joelphine,

You say 'my doctor feels its too early in the desease to suffer symptoms'. How would he know how long you've had it? Most with PBC have no idea when it started.

Definitely recommend you contact the PBC Foundation (see link at the top of the page) as they may be able to help you get a better perspective both on PBC and URSO.

To join them is free and their website has some very good information that may help you

[GrittyReads]

Hi Joelphine,

Badpiglet has stolen the words right out of my mouth, and I agree with her completely.

Your GP (I assume you mean GP, by Dr, have you actually seen a liver consultant ?) cannot possibly make such claims. As BP has said, people with PBC have no idea how long they have had it. PBC can be a relatively hidden condition for a long time, or the crucial tests to diagnose it may not be done, or some people may think their symptoms are for other reasons and don't go to the GP/consultant until late. Also, the condition can progress at different rates in all of us. Some people get symptoms of PBC even before their liver function tests (and other chemical levels) have become significantly abnormal.

I would talk to the PBC Foundation, the link takes you to their website, where there are email and phone contacts for their advisors. You do need to talk to them about not taking urso, as they will be able to explain about how it can slow down damage to the liver, even though it may not ease the fatigue. Also, you need advice on other things your GP should be testing for: such as calcium and Vit D, as deficiencies in these can cause joint problems; vit D needs to be given in specific quantities for a sufficient period of time. Has s/he also ruled out other conditions?

By the way, as you say your liver tests are fine, on what exact criteria were you diagnosed with PBC?

However, no need to answer my questions - contact the PBC and talk it all through with them: try to have any results and dates etc ready, as this may help.

Take care, I hope you get more help.

[Joelphine in reply to GrittyReads]

Hi iwas diagnosed with likely primary cirrosis in jan2013 it was based on m2 antibody and an alt of 45 though my liver speacialist is 99 percent sure it pbc, but but relatively bening.my fibroscan was fo-f1 fibrosis and have a history of thyroid desease! I see her yearly and have ablood test every 3 months to check blood counts! I just want to know if my symptoms arent caused by pbc it must be something else. Having so much trouble with benefits the whole thing is so stressful as most the time I'm in a state of fatigue!! What do you think!!also have had low vit d and course of vit d.thanks

[GrittyReads in reply to Joelphine]

I'm not an expert, so I really would talk to the PBC Foundation people.

However, have you been tested for all other autoimmune conditions, particularly the ones that (I think) are associated with the AMAs? Also, is your thyroid condition being well-managed? It is hard in the UK, it seems, to get good counsel on thyroid issues. Is yours the autoimmune one?

Further, do your PBC/LFT tests include ALP?

I assume you've also been asked you about family history of illnesses/causes of death (eg grandparents or older), and all other illnesses you've had, especially autoimmune conditions in the family. Also, have you had tests for other nutrients, eg iron, folate?

Finally, when you talk to the PBC F, you might want to think about asking them who the best consultants are (I don't think we're supposed to name people on here).

Take care, hope this helps.

[CathieG]

My GP thought I was a secret drinker for 4 years!! I told them I didn't want any invasive tests but surely a referral to a liver specialist would not have been invasive! I am too tired to even let their incompetence bother me any more.

[dollydaydreams]

I agree with some of the others, I was diagnosed in 2010 after falling ill at first in 2008, took them almost three years to work out what was wrong. Them my GP told me I could of had it for years as i had had bad blood results before, so really going by that they just don't know how long any of us have had it. And I agree with another poster, they ( the consultants ) don't take any notice of what I say to them either, like they are giving us the brush off ie: " you have your diagnosis now go away and be a good girl " according to mine nothing is related to PBC, caught him out this week though when My ruematologist ( cant spell that ) said it was ( in writing :o)))))))

[gizocsi]

I was having very bad LFTs for 13 years when they made the AMA test what was very positive. In the meantime I have had many symptoms, and their reason was and is most certainly PBC (gall problems, osteoporosis, depression, heart and joint problems, thyroid and neurological problems etc.) I also stopped taking Urso, because an "eye-doctor" (I don't know the English name) asked, what medicaments I was taking, and said Urso, he said it's not a medicament, but it was definitely worse, so after some months break I continued, and also I read here (from my colleagues, as I call You) some wise things about it. Don't worry, please, talk to FOundation-people and be of good hopes. There is life after diagnosis: this April and June I had better results than ever, for 15 years always have been much-much worse (I was diagnosed 3 years ago). Take care!