Confused: Hi all sorry it's me again! I won't... - PBC Foundation

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Confused

Bellalou10 profile image
8 Replies

Hi all sorry it's me again! I won't go on for too long but I just wanted to share my phone call with my consultants secretary today. I rang her today because I am going out of my mind waiting for my results. She said "yes your results are in but I'm not allowed to give you your results" so I said "can you not give me anything?" She then said " no sorry I'd get in trouble but all I can say is that you have NOTHING to worry about". So I couldn't help but say "do I have Pbc yes or no?" She said "the consultant will call you but like I said you have nothing to worry about"

What does this mean? This is a big statement to make I think which if it was bad news for me she would not of said this surely?. He didn't call back so still waiting....

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Bellalou10 profile image
Bellalou10
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8 Replies

Hello again.

It sounds like the secretary cannot divulge any information to you as the consultant has more than likely not gone through it all properly as yet. I only got information when I contacted the hospital myself after diagnosis and spoke to the consultant's secretary as I'd already got results (I had PBC) and a letter from consultant and she could just read the figure as I requested (Vit D, I received on consultant's letter that my Vit D was 'a bit low') as the results were known and had been read through. She couldn't of course make comment on them except relay what the consultant said to me in his letter.

Admin staff are not medically trained persons usually and they are not allowed to give information out unless it is written down by a doctor (or nurse in some cases) and then as said in last paragraph only state what has been written down. They are not supposed to make comments on what is not there, that is for the doctor.

They can however take a message from a patient and relay it to the doctor and then someone get back to you.

The night I was informed I had PBC by my GP, he had received a letter from the consultant (my consultant letter came later) to tell me the diagnosis and what to prescribe in what quantity. I remember receiving a call from the GP surgery about 7wks after I'd seen the consultant for the first time and had the antibodies test. The receptionist I spoke with said I had to make an appt to go in as the GP was to prescribe medication. She could not state more so I just asked what the medication was and she said it was the urso. I knew then I was to be informed I had PBC but it wasn't the receptionist who could inform me so. She didn't see the urgency in me going in and offered me an appt a week later. My husband was not happy when he heard me repeat the urso after I was informed when I was speaking on the telephone and he took over and said we wanted a soon as appt as if medication was to be given it should be sooner rather than later. We got an appt by the end of the day's surgery.

I don't know if you are in the UK but you could perhaps air your concerns with your GP and he/she could contact the consultant on your behalf to perhaps get your answers.

Bellalou10 profile image
Bellalou10 in reply to

Hi peridot yes I'm in the uk and under prof Neuberger an excellent consultant. I understand the secretary can't give results but my point is she wud not of said to me I have nothing to worry about on a whim. He may well of not gone through the results as yet like you say but she will of seen something like the biopsy report maybe to of told me that.

in reply to Bellalou10

Hello again Bellalou10.

The only thing I can add is that I think if your results were bad then I am sure you'd have been informed sooner.

Brummi profile image
Brummi

Hi, That's sounds good news, but sometimes results are not given over the phone. But you seem to be more at ease so that's a good thing.. Take care.

Bellalou10 profile image
Bellalou10 in reply to Brummi

Hi Brummi

Yes I'm taking it as a positive because although she can't give results she can't tell me I have nothing to worry about without seeing something on the screen. Not something she can pluck out of the air surely? It's made me feel so much better although I know I'm not out of the woods yet and still have the knowledge of abnormal lft's esp alt at 421 😱

Brummi profile image
Brummi

Abnormal LFTs can be caused by any number of things , again keep stress low. When I found out I had PBC I got told it was mainly a female ailment as soon as I got home outcome my birth certificate to check my sex, boy was I relieved when I saw it...lol

Bellalou10 profile image
Bellalou10 in reply to Brummi

Lol I bet you was!

I just want to share my news that my consultant just rang and I've had the all clear from my biopsy that I do not have Pbc 😬🎉🎉🎉

Thankyou for making me chuckle and I wish u all the very best take care xx

Brummi profile image
Brummi

Thank you for the news, you must have a smile like a Cheshire cat now. Thank you and take care your self. x

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