Which bloods do I ask for?

[Suzzypops]

My gastro consultant has gone AWOL and I can't get hold of her secretary either (was seeing her through works medical insurance). Every time I saw the consultant she kept asking if I wanted to be referred to the NHS. I'm now with a new GP and I've asked to be referred to the QE Hospital in Birmingham, thought may as well go to a specialist centre. My GP was unhelpful and tried to put me off because of the distance, about 160 miles from where I live but this isn't a problem to me. I said to my GP I'll need my bloods doing and he asked me which ones I would like. Please can someone help me, which bloods do I need? My GP wasn't helpful at all and I would like to go to the QE having had the correct tests. I was diagnosed Aug 13 and my main symptoms are fatigue and arthritis, I also think I have Sjogrens. I had two abnormal LFT's 10 years ago but the doctor at the time was dismissive and said "it's probably just you" and left it at that. I'm lucky I think as I don't suffer so much with itching but I do tend to pick up any bug that is going round and I've just spent another bank holiday feeling ill and under the weather. Hope someone can suggest which blood tests I need. Many thanks

[Hidden]

Hello Suzzypops.

Well my bloods that I normally have taken with PBC (diagnosed Dec 2010) are:-

GGT (normally taken with a liver condition)

Bone profile that consists of:- Serum Calcium, Serum adjusted calcium conc., Serum total protein and Serum globulin.

The Liver Function Test consists of:- Serum total bilirubin, ALT, ALP and Serum albumin.

The Renal consists of:- Sodium, Potassium, Urea and Creatinine.

I also have the Full Blood Count (FBC) that consists of 17 different elements.

I have just got my blood results out that I have to check.

Apparently it is a patient's right if they want to be referred to hospital as out-patient at a clinic that specialises in that area. I am under the NHS and in the UK.

I started itching early 2010 and at the time had fatigue. I went to the GP after putting up with itching for a fortnight and he started bloods from there himself. After so many he decided to send me for a scan and then a short time after he exhausted what bloods he could do he referred me to hepatology as an outpatient. I specified at the time I was not going to go to another hospital for outpatients when I thought my own local had the department. So I went to my local hospital.

My PBC seems to be pretty straight-forward, has been so far. Just take the urso. I attended outpatients over the course of a year and then asked the consultant if he would discharge me as I felt that I was wating my time for what I was attending for at the time. We had a chat, he agreed but did state that in future if things weren't going as well I'd be referred back. This is almost 4yrs ago now since I attended. The hospital consultant wrote to the GP with instructions regarding taking bloods and gave him a gauge to do so. I don't find going to the GP straight-forward at all, I find it hard work at times as seems I am asking for mountains to be moved when I ring for results and then ask for the print-out of the bloods (I started asking at diagnosis).

I think at some point in future I might just end up asking to be referred back and then go to t he hospital just for bloods in-between as you can do. Thing is for me it is over an hour's walk to the hospital (I don't drive) and then I have the trek back home after so for me quite like a half day or day out depending on waiting times.

I think your GP should know regarding bloods. I'd be inclined to ask my GP if the previous bloods are in my records so he/she knows.

Hope I've given you some pointers in some way. I am sure someone else might be able to add something that I might not have thought about.

Good luck and hope you will keep us informed via this site on your progress.

[Suzzypops in reply to Hidden]

Thanks Peridot, much appreciated

[chall13]

I would think your gp would need all of your blood work. Especially your liver blood work.

[Suzzypops in reply to chall13]

Thanks chall13

[GrittyReads]

Hi Suzzypops,

I live in the South-west, and - like you - I wanted to see a 'top PBC person' half way across the country. My GP had no problems with this, and referred me.

I believe it is your right.

I'm still not clear how it will all work, eg will my GP be sending all my blood work, etc. etc. so far, or will the consultant order new tests ... and if the latter, do I have them done there, or here? I'm seeing my GP shortly to answer some of these questions before the appt.

Your GP sounds quite obstructive. How exactly was your diagnosis of PBC arrived at? Or have you not had a definite diagnosis yet? Usually you need abnormal lfts over a 6 month period, as well as the presence of AMAs (antimitochondrial antibodies). If there are no AMAs, the GP/consultant should rule out other conditions that could cause the lfts variation - NB how often do you have bloods checked?

However, PBC can occur without AMAs, although it is rare, but that may be the case if you have symptoms - if the lfts indicate PBC in the absence AMAs, they would often offer a biopsy, unless your symptoms are enough .

But it's ridiculous, your GP should know what to send. I would get printouts of all your past blood tests (ask at your GPs, reception - there may be a small charge, but it is your right to have a copy), and see what's been done in the past. The list Peridot has given you is pretty good, but why not ask the PBC Foundation - there is a link to their website at the top of this page, and their online info will also list the usual LFT tests.

I would stick to your aim, and demand an appt with a top consultant.

Hope this helps and you get something sorted soon. Above all: try not to stress - I know that's easier said than done, but stress makes things worse in autoimmune conditions: it could be behind all the bugs and illness, more than the actual PBC.

Take care,

Grittyx

[Hidden in reply to GrittyReads]

Hello GrittyReads.

Normally when yo go to a hospital out-patient appointment they have your blood results taken from a GP on the computer.

I had an outpatient appt with ENT back in late 2010 prior to going for my first hospital outpatient appt that led to PBC diagnosis and the ENT consultant had my blood results there.

I know if a GP refers one to outpatients, in that interim period normally the doctor writes to the hospital with further information. It is a right to choose where you are going to go for hospital appointment for the referral for the first time. Usually there is a list if hospitals.

[Hidden in reply to GrittyReads]

Interestingly I must have missed something GrittyReads as I didn't see a full list of LFTs on the Foundation website. It does however list certain ones that are used in PBC.

Would be easier in the UK within the NHS for certain conditions like PBC to have a list of the standard bloods that are to be taken and any other that a GP or hospital doctor requests are linked to any blood results or suspicions about other things.

[GrittyReads in reply to Hidden]

Thanks Peridot,

Possibly my mistake. I was thinking of the list in the 'Folder' and assumed that was all also there on the site. I have not checked as I don't tend to read more than I can help on line - I already sit in front of a computer for too long.

[GrittyReads in reply to GrittyReads]

Also, the idea of there being a standard list of specific tests for specific conditions seems obvious, yes; but as I said in another post the other day, it seems that different regional testing labs call the shots on what they do and don't test for. I needed oestrogen/fsh levels testing, but my GP wasn't sure they would be would be done by our local Labs - even if she requested - as I was deemed 'too old' and the labs could overrule her request. They did do it, but she was talking in terms of: 'Let's see if I can get it under their radar' (!) I assume it is all about cost-cutting.

[Suzzypops in reply to Hidden]

Agreed Peridot, i'll wait for my appointment date then I'll get down to the GP and ask for all you've mentioned lol. Thanks very much

[Suzzypops in reply to GrittyReads]

Thanks Gritty. Yes, I was positive for AMA's. Phoned the QE today and they've not received my referral letter yet. GP secretary said she would get the letter off today (after speaking to the GP 4 weeks ago. ) Anyway, onwards and upwards.

[Hidden]

Can't you phone the hospital or ask your GP to phone them and ask what bloods they want. Peridot has listed them but just in case they want others done.

[Suzzypops in reply to Hidden]

I'll check with the PBC clinic when my appointment comes through