Liver Antibody panel suggests PBC - I am feeling very scared

[Hocktastic]

Hi everyone,

My GP ordered a liver antibody panel due to consistently slightly raised Serum alanine aminotransferase. All my other standard liver markers are normal. I’m obese so we thought this was probably NAFLD but since I have a hypothyroidism and morphea she was being thorough.

Therefore I was pretty surprised and upset to see in my liver antibody screen Mitochondrial antibodies were found at quite a high level (Titre: 1/640).

I haven’t had a chance to speak to my doctor yet but from what I can tell this is quite a specific antibody to PBC particularly at high levels like mine.

I’m going to be honest, when I’ve read online has alarmed me a lot, for example suggestion of 10 year life expectancy. I have only recently turned 30 so I feel really scared at the thought I may die before I’m 40. I’ve been crying quite a lot and generally feel devastated.

I’m sorry this post is quite long and rambling, I’m just looking for a bit of support and advice where to find accurate information.

Thanks

[Kakey]

pbcfoundation.org.uk/newly-...

You'll be OK, either way. It's daunting and worrying, of course it is, we've all been there, but with your results you might not even have PBC. Good luck x

[Hocktastic in reply to Kakey]

Thanks for replying!

I’ve had some sleep and I am feeling a bit better now.

Judging from the link you’ve sent, it seems even if I do have it, it’s not anywhere near as life threatening as initial google searches had me believe.

As I find out more I will post again with an update.

Thank you x

[rderezin]

Don't worry ..talk to your Dr..if you do have PBC ...we have the drug URSO when I was diagnosed 28 years ago they were only testing URSO and they told me 18 months and I am still here ..have lived a great life ...important to listen to Dr and take your meds ...

[Hocktastic in reply to rderezin]

Thank you for replying! Your comment has really reassured me, thank you so much! That must have been awful being told 18 months! I am so pleased URSO worked for you and things have moved on so much I'm feeling much better about it all

[Sam1121]

I know exactly how you feel! I was diagnosed accidentally- my dr noticed my Alkphos had been a little high (nothing crazy) on and off for a couple of years. Long story short - diagnosed almost 10 years ago. Take Urso, eat a healthy, but again not crazy, diet, exercise, see my drs and I’m still at stage 0/1!

[Hocktastic in reply to Sam1121]

Thanks so much for your response, this has made me feel so much better! I'm so glad things are going well for you I didn't realise lifestyle adjustments could also help! Can you recommend a specific type of diet that is helpful?

[Sam1121 in reply to Hocktastic]

Sure-I follow Weight Watchers but the choices I make are fresh fruit and chicken, seafood, whole grains, and not a ton of processed foods but I do have cream and sugar in my coffee! Ohhhh coffee (not decaffeinated) is great for the liver and water!!!!

[Hocktastic in reply to Sam1121]

Thanks for the info! that doesn't sound super restrictive then That is great news about the coffee! I am british so I drink A LOT of tea and coffee. What is it about the coffee that is good? is it the caffeine? thanks so uch for your help

[Sam1121 in reply to Hocktastic]

found this! Also no alcohol. I never drank so no biggie for me. britishlivertrust.org.uk/in...

[Hocktastic in reply to Sam1121]

Thanks so much! That’s really interesting. I’m not a big drinker either so that won’t be a huge loss for me

[Dinasmom]

I’m a RN who was diagnosed with PBC four years ago and I still have no real symptoms I’m aware of. PBC is a slow progressing disease in most cases and your liver enzyme results are actually quite encouragingly near normal. (Better than mine were and I was diagnosed at stage 1) This would indicate that even if you do have it, you caught it early. In more advanced cases you see high elevations of alk phos, bilirubin, and bleeding times.

Here’s the good news. There is a lot YOU can do to manage your illness if you do have it. By following a healthy diet and losing weight I not only cured my fatty liver disease, I went from a stage 1 PBC to a stage 0.. My labs are all normal now and I feel great . I eliminated sugars, processed foods, and it was all with it . Take a deep breath and remember, that old ten year prognosis rule was before the development of URSO and other meds to help control this disease . Good luck!!!

[Hocktastic in reply to Dinasmom]

Thank you so much for replying, I really appreciate it Yeah in terms of my bloods the only raised marker on my standard liver screen is ALT. I haven't had GGT tested yet but my GP has ordered it along with some other liver bloods (i've attached pictures )

That is really useful to know, I saw conflicting information regarding liver bloods saying that they don't nessecarily reflect the severity of liver illness, but it is reassuring to know my bloods would likely show more if I was at later stages in terms of PBC.

I didn't know lifestyle could help! That is aboslutly brilliant that you were able to improve your liver! Is there any resources you can recommend to help me learn what things I should or shouldn't be eating? (I saw some things about reducing fat? but i'm not super clear).

I do feel ALOT better and reassured from the comments here, as it seems the 10 year prognosis is pretty out of date now. Since you're a nurse, have you heard of a Covid-19 infection triggering PBC? I had covid last April and I'm wondering if that may have set off the autoimmine response?

Thanks so much for your help : )

[Hocktastic in reply to Hocktastic]

Bone, Liver, Urea and Electrolytes

Bone, Liver and Urea and electrolytes blood test results

[Dinasmom in reply to Hocktastic]

So happy you have been somewhat relieved by all the various responses. There is a great deal of evidence showing the anti-inflammatory nature of a whole food, plant based diet which can help most autoimmune disorders. To consume mostly “Whole Foods” means avoiding highly processed, convenient foods in boxes that are full of artificial ingredients and preservatives. You can find a lot of medically based. info on this on YouTube and Google.

I also eliminated most sugar, instead snacking on naturally sweet foods like oranges, kiwi, etc. Daily exercise is also important—-and is antinflammatory. These changes helped me so much that my liver specialist recently told me that he wished all his PBC patients did the same.

It all comes down to choosing your “hard.” It’s hard eating healthy and exercising even when you don’t want to. But it’s far harder feeling awful all the time. While I will always have PBC I still have no symptoms and my disease has not only not progressed, it appears to have improved as measured by my liver stage. Good luck! You got this!

[Hocktastic in reply to Hocktastic]

Connective Tissue and Liver Antibodies

Connective Tissue and Liver Antibodies

[Hocktastic in reply to Hocktastic]

Upcoming blood tests

Upcoming blood tests

[Kakey in reply to Hocktastic]

Your results look good, I know it's easy for me to say, but I wouldn't worry too much. Even if you do have PBC you have probably caught it early.

Don't worry too much about your diet, there is no PBC diet, Urso is the treatment. A generally healthy and balanced diet is recommended, as it is for everyone. Some folk find symptoms are helped by cutting foods from their diet, I feel much better without sugar. But that's an individual thing.

[gillrich]

Hi lots of replies but I don't think anyone gave you this

Pbcfoundation.org.uk this is where you will find the most accurate and up-to-date info on all things pbc. It is a charity run organisation set up about 26 years ago. Free to join but donations very welcome. Email and join a band of 20000 pbc sisters and a few brothers around the world. Their care a nd support is amazing

[CeeCee101 in reply to gillrich]

plus their PBC app is very helpful tracking symptoms/flares, etc. They also do great surveys and have an excellent newsletter, Bear Facts.

[JBH2000]

Don’t read what’s online!!!! Talk to your doctor. I met with a Dr in NY City at Mt Sinai, and I’ve been told the same thing always- this is not a death sentence! Yes, I’m on meds for the rest of my life, but that’s fine. I don’t know your case specifically, and I’m not a Dr, but please don’t jump to any conclusions. The PBC website is a very good tool.

Good luck!!! You are not alone💕💕💕

[OdinsMom]

First and foremost pay very close attention to what the dates are on ANYTHING you read. A lot has changed within the past even 5 years with PBC treatments. You can live a normal lifespan with treatment, for the most part. High ALP and positive AMA M2 is indicative of PBC but only meet 2 or the 3 criteria that are used to diagnose so you may need a biopsy to confirm. Having had 6 biopsies it's my preference over a tooth pull Stress is bad for PBC and most other things in life so try to put it aside until you speak with your Dr. Think of it as a disease process, like high blood pressure, diabetes etc you have a treatment and way of living with it.