Observation of Abbreviations.

[Leighton56]

Hi Everyone hope you are all as well as can be. I have just read all your post to a new subscriber and I suggest we dont put the abbreviations as we know them for tests etc as not everyone knows what they mean!! Its just an observation.

[gwillistexas]

Leighton56...I’m sure everyone appreciates your observation. However, no one has ever mentioned (from PBC Foundation), that we shouldn’t use abbreviations. It doesn’t take long to figure out what we’re referring to. If someone doesn’t know what our abbreviations mean, they will ask. Thank you

[Leighton56 in reply to gwillistexas]

Thank you for replying, but not everyone can take it all on board at once. I'm diagnosed Pcb quite along time but have quite bad memory loss and dont retain somethings. I was just trying to be helpful towards new people as it all can be quite daunting and scary to some.

[gwillistexas in reply to Leighton56]

Leighton56...I totally understand. I was diagnosed 2 years ago & I knew nothing. This was the first group I joined. It was very scary to read some of the posts. And there were a lot of abbreviations, but I researched to get my answers as to what they meant. The whole PBC diagnosis is frightening and I understand some of us have more issues because of this disease. We’re all here to support & and help our own. I joined another group a year or more ago but I eventually left it. This is home to me. Take care😊

[susanashworth]

I happen to agree with you , not all of us understand the abbreviation for everything, thank you!!!

[cazer]

Yeah it took me a while when I joined... How about we ask someone... Maybe Robert to compile a list of abbreviations??

[Hidden]

hi Leighton56, It was kind of you to point out that some new people may not understand abbreviations we have used. But I don't think you need be concerned. Although Health Unlocked's guidance for users recommended not to use abbreviations, IMO (in my opinion) it meant that sort and not this kind, "ALP below 200 is regarded as ok". gwillistexas makes a really good point when she says people will ask if they don't know. It's good practice always to ask if we don't know, and skills us up for managing with PBC where we need to be asking every time we don't understand a decision, suggestion, prescription, symptom etc.

I hope you are doing ok? Why not let us know how you are doing now? We'd all like to know.

[Debbiem40]

Really don't see what the big deal is. I have no idea what ALP stands for and I've had PBC for 16 years. Some people just don't get into it as much as others. Theres no harm in asking what all the abbreviations mean.

[Hidden in reply to Debbiem40]

You are right to say some people are more "into it" than others and we are free to choose which way we'll go. But isn't it best to choose after you have all the information you need? We can't be our own advocates if we don't have the basic knowledge. We can't feel other than 'in the dark' when we see our consultant. We'll be outside her door in two minutes if we haven't anything to ask or contribute. I really struggle with understanding (anything some days !) But I have begun to see the importance of my test results. Not as compared to anyone else's. Just the change over time of my own tests. I wouldn't criticize anyone for choosing to 'leave it all to the experts'. But if I do leave it all to them, will I have done the best for myself if at some point I think, rightly or wrongly, that the experts got it wrong? For as long as I'm able, and as much as I'm able, I am "into" it.

[Debbiem40 in reply to Hidden]

So if someone on here asks for help with the abbreviations why not just tell them what they mean?

[Hidden in reply to Debbiem40]

That's what happens... of course, we are always asking each other stuff, and we are always getting answers. We are always learning from each other.

[gwillistexas in reply to Debbiem40]

I agree. Simple 😊

[ninjagirlwebb in reply to Debbiem40]

I only know the acronyms, can’t tell you what they stand for. That’s the way my doctor speaks to me too. But if I want him to explain more, he does. Yes, I take notes too. He draws diagrams for me as well. This helps my understanding better.

[Wocket]

I’m dyslexic and if I had to write ursodeoxycholic acid every time instead of Urso for instance, I would not bother writing ever.

[ninjagirlwebb in reply to Wocket]

LOL. I am laughing so hard right now.

[gwillistexas in reply to ninjagirlwebb]

😅

[Hidden in reply to Wocket]

Glad you are good with your hands! Are you ok to say Ursodeoxycholic? When people at first tried to pronounce it off my prescription or list of current meds, I used to try to help, but now I just say "call it URSO". It saves the nuisance of seeing stupid people's eyes narrow or lips purse when I get to the bit that sounds like 'alcoholic'! One assistant in a national chain of pharmacies told me "We can't run around for the likes of you". We are a big group too. Maybe we should lobby to get the name changed to URSO or we won't take it!

[Wocket in reply to Hidden]

When I was first diagnosed I decided I needed to learn how to say what medication I was on. You never know when you need to tell someone.

[Hidden in reply to Wocket]

good plan.

[58goose in reply to Wocket]

I keep a copy of my repeat prescription in my purse - saves me having to try to say Urso in full and it also means I can show anyone (dentist, emergency worker etc) exactly what I'm taking on a daily basis.

[Wocket in reply to 58goose]

That sounds like a great idea. Will have to do that in future

[ninjagirlwebb in reply to 58goose]

Me too, but on my smart phone.

[mrspeffer]

Good morning...here are a few of the common abbreviations we use.

LFT liver function test

AMA antimitochondrial antibodies

AST(SGOT) aspartate aminotransferase

ALP Alkaline phosphatase

ALT alanine aminotransferase

Hope this helps you understand our journey. You can google these to see what their role is in our bodies....Be well

[Lesjohn in reply to mrspeffer]

Thank you!

[mrspeffer in reply to Lesjohn]

my pleasure....let me know if I can help with anything else

[Wocket]

Good job you wrote that because if I did you would never have understood a word. 🤪

[Wocket]

Just looked up some of them and guess what, I’m still none the wiser. Good job I’m good with my hands. 😁

[mrspeffer in reply to Wocket]

Keep reading and learning. It's sometimes helpful to understand the role these enzymes and other markers play in our bodies. At least having a little knowledge is helpful when participating on this forum or discussing labs with the doctor. Be well

[June9961]

Just wanted to add. Apart from Urso and PBC I too was unsure of other abbreviations so I sat down with my GP and went over what I needed to know with him. There is also some that are used from other countries which don’t apply to UK so I ignore them and concenrate on what I know. 😀

[boneytoys]

Interesting conversation line.

Slightly off the subject...

My blood results when I get them done , show the accepted parameters of each test in brackets which is comforting

If I’m within I’m happy . When I was first diagnosed I absolutely wasn’t. Urso has changed that and I’ve been stable for years . Pbc has markers like ALT that can be measured in our blood. How lucky are we that we can monitored these so easily through these simpkev front line tests

I’m lucky here I have a blood testing card that allows me at any time if I’m worried to walk into a blood testing facility and be checked . I can then look on line and see the results

Take care

[Candy12 in reply to boneytoys]

I love the idea of a blood testing card, such a good idea. I doubt we’d get that here in the UK, but it would save on appointments just to get the bloods done.