PBC Foundation
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Worried

Had a liver biopsy 6 weeks ago to see if abnormal blood results are caused by aih or fatty liver ( have been diagnosed with pbc from other blood results ) was due to see hep consultant next week for results, had a phone call today cancelling that appointment the next available one is in 8 weeks time ! Have asked if consultant can phone with results or fax results to gp who knows as could only speak to clinic receptionist .

Update ... have spoken to clinic reception consultant is writing letter next week to me with results .

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Sorry for your delay. It is so nerve wrecking...waiting. Doesn’t seem like you are in the US.

In US, I was able to get the hospital to send me a copy of the biopsy results. When I checked in for the procedure, had to fill out paperwork so I requested that it be sent to myself, and my primary care doctor. My hepatologist who ordered the biopsy automatically gets a copy.

Can the receptionist have the consultant call you directly? Or have your GP call to talk to the consultant.

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In the uk where our hospitals are in winter crisis 🙄so I understand I'm hoping consultant will call me ( but it doesn't usually work like that here in the uk ) if I don't hear anything in a week will ask gp to call . I have an appointment in 2 weeks to see rheumatoid specialist, he postponed tests for all my muscle pains as he believes I have aih so really need a definite answer for him , as no point seeing him if pain is from aih , but really need an answer as pain is awful and affecting my work . Gp has told me to avoid painkillers because of liver results so it a no win situation.

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Yes...I read an article in the NY Times about the UK crises & your Prime Minister’s response.

I hope you get some relief soon.

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Hi Louisethew

In the past I have telephoned the secretary of the specialist and left a message. On one occasion I was lucky he was there at that moment so I spoke to him. Is it possible that you could try the secretary even just to ask for the blood results to go to the GP. I think you have suggested asking the GP to get to them.

I am not sure but I think my GP can see the results of my hospital ordered blood tests. Maybe worth an ask at the surgery first.

This winter business in the NHS in the UK certainly does impact on us but I hope you will get an answer soon.

best wishes

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hi Louiseethew i to live in the uk ( Scotland ). I have been diagnosed with pbc since 1998 32 yrs of age . I first started of seeing the speciality & consultants Gastroenterology team once a year and now for the past 2 yrs i have been sent to the specialist Hep consultant as my disease has progressed further. What i wanted to advise you on to speed up your waiting time is to contact the hospital reception and ask for your consultants secretary, if she /he could send the results to your gp. The results always do automatically get sent to your gp anyway . But this could speed it up . If i have had any questions i have always spoke to specialist secretary and have always had a speedy reply .

Another thing is i don't understand why your doctor has not subscribed you any form of painkiller, maybe he is just be too cautious , as he is not familiar with the disease. My Doctor is brilliant she has always phoned immediately to my specialist and asked directly can Sharon take such and such. Go back to your gp and politely say if he could ask the consultant for advice on what pain meds you can take . Don't go in demanding or being hostile that will get you nowhere ( btw not suggesting you would ) it's just you will be at the doctor's a lot now and you will have to build a good relationship with them try sticking to the same doctor as it makes their job easier too as well as you getting out what you need from them . I had to give up going back to work as in too much pain and so sleepy, also had the dreaded itch ( which is under control now after a few trials of different meds thank the LORD ) but suffer really painful joints and muscles very debilitating.

I hope this helps and i'm so sorry you got this disease wouldn't wish it on anyone , also hope you get all the help you need

take care

shaza

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Thanks shaza , gp seemed unwilling to prescribe painkillers until I get a diagnosis. Consultant only put me on small does of urso ( I'm very overweight) until he gets results from biopsy ( although he said I definitely have pbc ) was diagnosed pbc last year actually went to gp last May about the pains so quite Feb up I still got them and no answer or treatment

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hi Louiseethew,

i'm so sorry that it has taken so long for your diagnosis and to get you started with pain meds . Phone your GP receptionist this morning and ask if your results have been sent from the hospital yet .

Do you suffer any other symptoms of pbc ?

let me know how you get on

kind regards

sharon

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My appointment in the U.K. Was put back until April instead of February and when you've waited a year it's very frustrating.

However I understand it's only non urgent operations and routine appointments that have been put back, so I would take some comfort from that alone if you can Iam sure if it were urgent you'd still be seen.

If you are seeing the rheumatology soon they should be able to see the results, I know my consultant can see other test results and rightly or wrongly always comments on them.

My GP eventually gets all the results from hospital tests, i would make an appointment to see them.

if you know the consultant call his PA and ask for the results to be sent to the GP, some PA are very helpful it might be worth explaining about needing the results for rheumatology.

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