Hi been diagnosed for 5 yrs now had gall bladder out after 2 yrs then diagnosed with ibs
I now have terrible fatigue all I want to do is sleep so much so that im off work
I had to request liver consultants app appointment last year as not had an appointment for year and half nothing has come through again for this year.
Went to drs who did blood test and its cone back as elvated lfts high cholesterol and high white blood cell count got to repeat in 2wks to see if just a blip
my question is does anybody else have high white blood cell count on there test results
also when I asked liver consultant if I should be ref to new liver unit in my local hospital he just dismissed me and aldo said he has never heard of fatigue in pbc
what am I supposed to do now
I live in Newport South Wales anyone else local xxKaren
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cowre
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A liver consultant never having heard of fatigue in PBC is a little odd to say the least.
Time to contact the PBC foundation!
Hello cowre.
I think a higher white blood cell count is due to fighting infection as that is what the white blood cells tend to do. I cannot verify I am right though but I am sure even a standard GP can read a test result for this.
Out of interest apparently patients can request seeing a consultant as an out-patient if they feel they need to do so.
Not sure regarding Wales but in England there has been a recent change to the Choose & Book system for appointments to hospital and at some point patients are apparently supposed to be able to have more involvement. (I can't see that happening sooner rather than later as it seems that doctors don't abide until they are deemed they have to do so.)
I know when I got my first appointment pre-diagnosis of PBC late 2010 my GP said he was referring me to hepatology at hospital I said I didn't want to go to the that seems everyone does here in Lancashire as an in-patient or out-patient (we have our own hospital but services have been transferred now for several years) and I received a letter direct from the hospital after the GP wrote. The appointmentI received was 13 weeks off attending though as at the time I wasn't in the system.
Can you not see another GP in your practice with regards to being referred back to hospital to see someone else or even at another hospital? Best consultant to see with PBC is an hepatologist as opposed to a gastro doctor.
Bristol Royal Infirmary has a brilliant PBC department ( I go there) and have 6 monthly check-ups. Not that far from Newport and well worth the journey I would think.
Just to echo Jane, badpiglet, dianemle etc. A liver consultant (if that's what he is!) who is not aware that fatigue is one of the major symptoms of PBC ... ?
Well, I'm speechless.
Phone the PBC foundation, talk to their advisors. Might help if you have all your results and dates etc to hand: your GP's reception should hand over recent ones - possibly for nothing, or maybe a small photocopying charge - while they may charge more for older ones, due to searching finding, copying etc. Also will help if you can tell what diagnostic criteria given for PBC diagnosis, eg high lfts, presence of AMAs etc, and what treatment, eg are you on urso, having regular lft tests, ultrasounds etc? - whatever. It is your 'right' to have a copy of all results and letters.
Hope you get sorted, Sweet1pea's suggestion of Bristol RI sounds good - I recently had great joy from visiting Birmingham's QEH; it's a long way from Devon, but worth it to get a new diagnosis. Also ... maybe .... a copy of the PBC Foundation's handbook to be sent to the consultant, with 'symptoms' highlighted?
Take care, try to keep cheerful meanwhile: avoid stress, have fun, and try to spoil yourself (in a healthy way!!).
Gobsmacked your gp has not heard of fatigue with pbc as this is probably one of the most prevalent symptoms. ..its why I had to leave work .that and the nausea and ibs all part of symptoms. Think you should push for a consultation with liver specialist and give the gp a doc leaflet from pbc foundation. Make sure you get signed off by doc as you should be entitled to sickness benefit. ....people don't realise how ill the fatigue can make you feel and how it impacts on your whole life. I found I couldn't function ad I used to ...memory concentration etc all affected. Put any energy you have into fighting for your rights .Good luck .x cazer.
A gp who has no knowledge of PBC fails to surprise me- mine doesn't and has no interest in finding out- but a consultant loiver specialist? I'm weslh too (Pembs) and as far as I am aware we do not have a hepatologist in Wales. My local gastro has a fair amount of knowledge but I Have, after many years seen a specialist in QEH Birmingham. A long way to go I know but closer for you. I believe there was a clinic fro QEH at one time in Port Talbot but that this was discontinues as the Welsh assembly would not pay. Join me in writing to Mark Drakeford about this?
Its unheard of for a liver consultant not to have heard of fatigue in PBC. I would recommend you ask your GP to refer you to the QE in Birmingham, they see loads of people from Wales and there are the occasional outreach clinics in South Wales
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