Blood results

[Ackie123]

hi all, new to health unlocked. Recently diagnosed with PBC from positive blood test. Just wondering if AMA 400.000 titre and M2 mitochondrial 220.000 iu/ml is particularly high? I've been started on Ursodeoxycholic

[gwillistexas]

My ANA Titer was 1:640. What I read in the rheumatology website, that high a reading indicate severe disease going on. But I also know I have other autoimmune things going on, just not confirmed with rheumatologist. My mitochondrial M2 was 128.00. Should be <28 in my lab.

[Ackie123 in reply to gwillistexas]

Thank you for the reply . It's all very confusing . So should my AMA be written 1:400 . My doctor didn't say severe disease and I didn't think to ask if it was a high positive. I go back in 3 months I need to better prepared with questions

[gwillistexas in reply to Ackie123]

If you’d like to read it, search ANA. I think it brings up ANA Titer 1:160. Click first link, rheuminfo.com. It explains it very well. 😊

[Ackie123 in reply to gwillistexas]

Thank you

[gwillistexas in reply to Ackie123]

You’re welcome. Hope that helps😊

[Huggy7614]

Hi Ackie,

Welcome to the forum. You’ll find lots of people with an amazing level of knowledge on here, as well as others who will just provide support and help you realise that it’s not as daunting as it originally seems.

However, none of us are medically trained (hmmm guess there may be the odd doctor on here!!) and so we are not allowed to interpret results. That’s for your medical professionals. So many other factors can affect results, especially with auto immune diseases such as pbc (I’ve got that too!!), so don’t read too much into one specific result.

Just a couple of words of advice. Avoid dr Google!! If you do (and we all do!!) put nhs into the search bar as well. There is a lot of rubbish posted out there!!

Definitely a good idea to bring pen and paper to any appointment. I keep a plastic folder with all my letters and take it with me to any appointment. And bring someone with you if you can. Helps to remember everything said!!

Don’t worry, most importantly. Pbc is a long term disease, and may end up just being on the sidelines for most of your life. There are so many different levels.

Good luck. Andy.

[Ackie123 in reply to Huggy7614]

Hi Andy ,

I know exactly what you are saying . I have looked at sites and medical journals this is so out of my field. Looking for what specific results mean is so complex.

Even if there are medics on here with the condition you can still feel completely lost.

I will be much more prepared next app. My GP hasn't recieved the latest results and says the hospital doesn't always send them if that's the case I won't get them on the GP app . I spoke to the consultants secretary who said it was up to the consultant to decide to send them. I'll phone again and say it's my condition and I need to know .

I've noticed on this site that people take ownership of their condition and this is something I need to do.

Tracy

[Huggy7614 in reply to Ackie123]

Hi Tracy,

Yep, that’s pretty much the best way!! Pbc can progress in so many different ways, it’s very individual!! And how you come to terms with it can determine how you cope with the symptoms/treatment moving on!!

Just keep positive. You’ve got it, can’t do anything about that one, so learn to live with it and live your life!!

I felt low when I first found out about it, got to grips with it, and now three years later, post transplant, I feel just fine and positive!!

Fingers crossed you’ll never got to the stage of transplant, but if you do, and that really is the last line of defence, you’ll pop back out the other side and be as happy in life as before!!

I know, I’m nuts!! Good luck. Andy.

[Ackie123 in reply to Huggy7614]

Wow you went through so much , 3 years and then transplant just shows how individual it is. Love your positivity . I've kept this from my family because I am a positive person and would hate them to worry about something that might never give them cause for concern. I work full time at a very stressful job love the gym and swimming and not letting it get me down now .

Thank you you are great

[Huggy7614 in reply to Ackie123]

Sounds like you’ve got half of it cracked!! Do keep being positive and fit. Trust me that helps!! I’ve just started running again after the tp- now that felt weird!! Keep an eye on your diet and alcohol levels, and keep enjoying life - well, outside of the stressful job!! Hopefully you love that too!!

As for family - do what you feel is best, you know your family, but do remember there may come a time when you need them to understand, and possibly have to rely on them!! Hopefully it will never come to that!! The other way of looking at it is if you tell them about it, once you’re in a good place with it, they will see how well you’re coping and be less worried!!

Sometimes it’s good to have someone to chat to - that’s one of the huge bonuses for finding this forum!!

Andy. 😉

[Ackie123 in reply to Huggy7614]

Lots to think about there . Love my job , diet good and only have the odd drink . Have a great day .

[EileenUSA in reply to Ackie123]

Hi,

Glad you found this site. Wonderful people here.

If you haven't already joined- you should check out the PBC Foundation out of the U.K.

They have some great resources for us and they are vital advocates for PBC patients. They sponsor this peer support forum here on Health Unlocked.

pbcfoundation.org

here is a great document to use for preparing for dr visits etc. It outlines the current standards for diagnosis and management of PBC.

pbcfoundation.org.uk/upload...

Hope this helps.

[Ackie123 in reply to EileenUSA]

Hi , thank you I'll take a look at that . I'm also on the foundation site which is how I found this one . I'm finding both very useful , and also great chatting to people who really understand.

[EileenUSA in reply to Ackie123]

Yes! This group of folks really has good solid advice, feedback and real world experience with PBC.

since it's so rare it's common that we have a shocked reaction to diagnosis. I was a bit undone when I got dx but once I got with good specialist and understood it all better I adjusted and

when I might be a bit down with certain symptoms I know I'll get support here. Hugs to all.