Scan

[jen23lilly]

Hi I've been diagnosed Pbc for about 4 years now, had scan when first diagnosed but was wondering how often should we have scans as not been for one since ?

[Hidden]

Not sure if there is a set protocol for how often a scan is done, it seems to vary from what I read on here, but I have one every year with six monthly blood tests and have done for seven years. I would be inclined to ask you doctor to arrange one if it puts your mind at rest.

[teddybear7]

All I had was one ultra sound scan never had anything else three years ago. X

[janetfolley]

I've only had one scan when diagnosed 12yrs ago and blood test every year. When LFT was up and cholesterol high my GP always says don't worry I can deal with your problem!!! Often ask if I can see the liver specialist at hospital but I always get same answer no. Makes me wonder if money is involved.

[Rockie]

Jen23lylly Hi. I had one scan 2009, biopsy, ERCP and never since then. I just go for blood tests twice a year. I know what I have, and know there is no cure and my blood counts have come down, far from what the readings should be, but for me it is encouraging

[jen23lilly]

Thanks for the replies

[butterflyEi]

Hello jen23lilly

I was diagnosed in 2006 following a biopsy. I was checked for the first three years under the care of a lovely specialist. The fourth appointment came through at a different hospital and a different consultant who was rude and dismissed me back to the care of my GP. And there I have remained until now. I had a telephone consultation 10 days ago and asked her to refer me to a specialist as I am currently having issues with the itch and she said "people like you should be seen by a specialist". She said she would write a letter of referral. I felt a bit cross because she has been my GP since I was dismissed back to the care of the GP and she tells me this now. I am in the south between Southampton and Portsmouth where there are several hospitals but with a very heavy work load and a dense population.

Can you see a different GP in your practice, or maybe a locum if you can find out when your doctor is on holiday and ask for a referral? Alternatively PALS may be able to help. I have put up a link but you can perhaps google them in your local area.

nhs.uk/chq/pages/1082.aspx?...

best wishes, hope this is of help

Apologies I have edited this as I somehow missed that it was a post by @jen23lilly and was responding to janetfolley

[spoul]

In my 17th year and have them 6 monthly 😊

[Wilmahair]

I was told to have annual ultra sound scans. Quarterly blood tests and bi annual bone density scans.

[jen23lilly]

Seems like everyone is told different things

[Jackie71]

I am the same as Spoul, every six months, but it is rotated in that have ultrasound then the next time will be CT scan.

[IOW-gal]

I have an ultrasound scan every year. A bone density scan every two years and see the specialist at the hospital annually. If I am ever concerned about anything I see my local GP who I have a great deal of confidence in.

[IOW-gal]

Forgot to say I have six monthly blood tests for PBC but have on occasions had blood test for something quite unrelated but they always include LFTs as well.

[jen23lilly]

Thanks for all the comments, think I need to ask my gp for a scan as it seems a long time and as we all know thinks can change at any time.

[bobbycat]

Do you have tegular lft blood tests? They are usually every three to six months. I have a 6 monthly scan, endescopy once a year and am starting bone density tests next week as have chronic backpain.

[bobbycat in reply to bobbycat]

Sorry also 6 monthly consultant visits. I have had pbc for over 20 years and it is only now on stage 4

[jen23lilly in reply to bobbycat]

Not had a blood test for a while must be nearly a year, it's between my shoulders that is really painful from the base of my neck down between my shoulders some days I feel I can't hold my head up as it hurts too much.

[Tores123]

Hi jen23lilly,

I see prof Jones in Newcastle who's one of the top PBC docs and I've only ever had one ultrasound. I get 6 monthly bloods done when I go to see him, and my doc does them if anything changes to keep a check on everything. I've been diagnosed for 8 years and still pre-PBC so no liver chirrosis yet which is great! The disease moves differently with everyone and my main problems have been pain. Mine also started getting really bad in my neck and shoulders, I started getting acupuncture which really helped, as does massage, a tens machine and heat lotion.

I now go to a pain clinic as well as seeing my PBC consultant and my fatigue clinic and my GP is brilliant, so getting lots of good advice!

Hope you get the tests done that you want to put your mind at ease. Good luck

Vic xx

[jen23lilly in reply to Tores123]

Thanks for your reply