New and Freaking out!

RKAA•3 years ago•

Saw a blood work yesterday, the mitochondrial m2 was 30.5 and the ANA was high too. SO definite for PBC? Not able to get in contact with the doc yet. Slow in returning calls. I think 10 years ago a doc told me increased liver function but nothing ever done.

So if have it, what is life expectancy for different stages? Will my life be shortened for sure? Quality of life?

Thanks

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Liver diseases

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in reply to butterflyEi

3 years ago

Hello butterfluyEi.

Well I think now with having PBC for 4yrs I can say too that I don't think diet has much of a bearing at all on PBC.

I don't eat things with MSG in them if I can see ingredients or have artificial sweeteners for eg but I'd say I was pretty much like that pre-PBC.

I go for quality as opposed to quantity where food is concerned. Surprisingly though my husband and I watch a programme over here in the UK that is on tv early wk all about food 'unwrapped' and there is usually 3 ingredients or food items shown how they are produced or processed. It is pretty interesting and some of the things we deem the baddies you tend to find they are actually not so bad after all. Tinned tomatoes were featured this week as one and though people who were asked said 'fresh is best' as we are often told, it turned out that a chemical in tomatoes known as lycopene is actually of a higher quantity in tinned tomatoes than the fresh ones so are deemed that bit better.

Batatis

3 years ago

RKAA,

In addition to Brummi's and ButterflyEi's replies, please read my previous posts about my mom's and mine experiences with PBC. I can very well relate to how you feel though, as two years or maybe three and that was when I was undergoing biopsies and all sorts of tests to out rule liver malignancy but yet to confirm non viral chronic hepatitis, I had a fit of sobbing in fear of a shortened life.

Luckily after proper medication I am now free of hepatic lesions and my liver functions are back to normal.

Apparently, PBC does not shorten life but somehow changes or slows it. I guess that is the case with other autoimmune disorders and which PBC is one. So, shake off the fear, get busy even if your body is aching or itching, but never allow your soul to ache or itch. For life is sure good most of the time, at least we try our best to make it so for others as well as to ourselves.

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3 years ago

Hello RKAA.

As Brummi states on here too, try not to look too much into it as there can be other reasons for abnormal LFTs.

I never received a figure for AMA (the anti-mitonchria antibodies) in late 2010 when I was diagnosed with PBC. I got a the consultant letter in print-out that he sent my GP at the time as he asked him to inform me I had PBC and to prescribe urso and in what dosage. My AMA just said, "a high titre" of the AMAs that he was making a diagnosis of PBC along with symptons at the time (itching and fatigue) and also abnormal and slowly continued rising LFTs and GGT.

I never really thought much about what I was going to be informed I may or may not have during 2010. I did read library ref books on the liver when the GP said he had deduced from bloods that it was liver-related and not a bone-realted problem (you can have abnormal LFTs with a bone problem) and also looked online. I did then see PBC but hoped I didn't have it. I never mentioned to the doctors about this but on my first visit to the consultant at outpatient hepatology clinic I did say was he checking for somehting like PBC on the day he said he would do antibodies tests. (I had a negative ANA result.)

I had about 6/7 weeks to wait from the antibodies blood tests to being informed I had PBC. I was informed at the time by the consultant that these tests take slightly longer than standard blood checks that we can all have from time to time like full blood count and even the LFTs don't take long.

Have you got a further appointment with your doctor? If so then it might be best to just sit it out and wait, meanwhile write any questions down that you might have for him/her.

It might sound a harsh thing to put about waiting but at the end of the day even though this is very important to ourselves in wanting to know if we have or haven't something or perhaps something else, I am certain that if you have something that is crucial to be informed sooner as opposed to a bit later then you would have been quicker. That is how I saw it back in later 2010. I know after I was diagnosed I couldn't understand why I wasn't started on ursodeoxycholic acid (urso) with a doctor's thinking I may have PBC but again at the time my LFTs and GGT must not have been of a crucial significance to perhaps warrant this? Aas far as I know only urso is used in PBC so maybe that is why doctors heed caution. (Urso was originally produced for gallstones which obviously those are ruled out earlier in the 'game'. I had a scan months prior to seeing the consultant.)

What I did in the period of waiting back in later 2010 was to look after myself even more than I thought I had been doing. Oddly enough when I received the print-out of all my bloods for 2010 at diagnosis I noticed that in the period of last having bloods done at the GP surgery (3mths prior to going to hospital) and then the ones I had taken with the consultant, my LFTs had actually come down a bit of their own accord naturally.

I do feel that once you know you have something you can start dealing with it and then try to put it to one side. I was 45 when I started itching early 2010, 46 at diagnosis and now I am not far off 51. I'm doing pretty good. I don't think about any stages of PBC. I was just informed by the consultant on seeing him after diagnosis that I had 'probably had PBC a few years'. I took that to mean it was quite new to me. Urso has helped bring down the LFTs and the GGT. I have recently had bloods repeated and a couple are slightly higher than they were 6mths ago but nothing alarming there.

I don't think about quality of life with PBC. I think that as we get older there might well be changes with us with PBC but for me I'll deal as and when as opposed to thinking about all that now. I want to enjoy life as you never what is round the corner. With PBC some of us might always remain roughly how we are now, majority of us will live out life with it and for a few it will alter not for the better but I personally don't want to think about the 'what if's' as this might never happen so needless worrying.

Hope you find out soon so you can start dealing with it all.