I'm new here: I was diagnosed with PBC in... - PBC Foundation

PBC Foundation

9,383 members7,978 posts

I'm new here

richardhayes profile image
11 Replies

I was diagnosed with PBC in May this year and my specialist has just told me that I am further along than he thought. This is because he has found that I have an enlarged spleen. I have been worrying about this since he told me.

Written by
richardhayes profile image
richardhayes
To view profiles and participate in discussions please or .
11 Replies
gwillistexas profile image
gwillistexas

Prayers🙏🏻

tama profile image
tama

I have an enlarged spleen also, i am stage 4 cirrhosis but i have been stable for 5 or 6 years the urso has worked good for me, but i suffer from lots of symptomd like extreme fatigue, itching pain in my liver

Sachin1234 profile image
Sachin1234 in reply to tama

Can you describe how liver pain fills? Every time after I eat or drink I feel little pinch or dull pain under my left ribs

gwillistexas profile image
gwillistexas in reply to Sachin1234

Don't understand that. Liver on right🤔

Smfariman6060 profile image
Smfariman6060 in reply to tama

Hello.

You said that years of cirrhosis have remained stable, please tell me what diet plan you have and how you lived?

I hope you remain happy and happy.

with respect

bobbycat profile image
bobbycat

You might only be stage 3 PBC which can be controlled very well usually by Urso. Take care

GrittyReads profile image
GrittyReads

Have you had a liver biopsy? My understanding of PBC is that it can only be properly staged by a biopsy.

I would contact the 'PBC Foundation' who host this site on Health Unlocked. There is a link to their website at the top of the page, with links for phone and email contacts. Their trained advisors are lovely. It might help to have all your letters, results and test details etc to hand, so you can tell them what has - or has not - been done so far, by way of diagnosis.

If you don't have all your results, ask your Consultant and/or GP receptionist for copies. You might have to pay a charge for older documents, but recent ones should not be a problem. Really you should receive a full copy of everything done and said, but lots of people don't receive them.

There are a lot of people on here at later stages who are still living a full life.

Hope this helps, take care.

Sachin1234 profile image
Sachin1234 in reply to GrittyReads

Yes, I was diagnosed very early, no liver damage at that time. 6 months ago I did my fibro and that was normal too in my understanding.my every three months hepatic panel test has been now every 6months.I have no diet restriction from my liver specialist. Tho it has been several months now, I have developed reactive hypoglycemia which can be hypoglycemia if I don't control my diet habits so, I follow my nutritionist from endocrinology dept these days and it is working very well except I'm losing weight which I don't want..

I might have to check for Celiac disease next time I visit to endocrinologist I guess.. I'm lactose intolerance too.

Dx pbc, hypothyroid December 2013

Dx reactive hypoglycemia December 2016

I may have sjogrens disease too!

Sachin1234 profile image
Sachin1234 in reply to GrittyReads

🤗🙏

Andrei profile image
Andrei

The spleen can be bigger but do not worry so much about it.

Important is to keep your nr low for alp &ggt & bilirubin.

The enlarged Spleen is the effect that the liver is suffering.

Sachin1234 profile image
Sachin1234

🙏

You may also like...

I'm new here!

ago when blood work showed PBC. Had a liver biopsy and it showed no sign of PBC but fatty liver...

New here! Question about Diagnosis

does anyone have any thoughts? Is it possible to have these blood results and NOT have PBC? Or, if...

I'm new

Hi I'm 48 finally diagnosed Dec after 2 years with a useless locom doctor, who has had to leave the...

New here

of fatigue- I just go to bed early or get cranky :) Miss my wine ! So glad to have found this...

New Here!

Hi, I am in the know about PBC because I have had it for 10 years. I would like to meet some of you...