Blood Tests

[jrobertson1]

How often should I have my blood tested in a year? Now attend nurse led clinic once a year instead of liver specialist. Bloods referred to at last appointment were a year old and no request to have more done. Back to clinic in August and GP surgery say they must receive a request from the hospital before they will do bloods to send. Puzzled? Diagnosed with PBC in January 2011 and take URSO. Suffer fatigue and joint pain and have steadily put on weight since taking URSO despite cutting back portions and eating healthily.

[Hidden]

Hi there, when first diagnosed December 2009, I had my bloods done every three months. My bloods are now stable, I've been on urso since January 2010. I now have bloods taken every six months, my hospital consultant gives me two forms and tells me to get my bloods done at six month and then again a week before my annual consult.

Best wishes x

[Gioielli5]

I have mine done annually. They only fluctuate a little so nephrologist is happy and so am I.

[Gioielli5 in reply to Gioielli5]

Sorry auto tech - heptologist!!!

[butterflyEi]

Hi

I was diagnosed back in 2006 as being asymptomatic. Since that time I went for a period of 5 years (roughly) where I had no tests done at all (I am in the UK). Then following a stressful period my itch went ballistic and I was forced to see the GP. Since then I have been having annual blood tests organised through the surgery. I have not seen a specialist for at least 5-6 years. The last one I saw was very rude and if the only thing that can be done is to prescribe Ursofalk I saw no reason to see this particular "specialist" again. The surgery are able to monitor my bloods and I guess if they spike I will have to go back to see a specialist in the meantime I try to eat well. I also have put on weight since the URSO but I have also had a hysterectomy which I think may/might alter a person's shape. (I clarify here that my shape has altered as has a couple of friends who have had this operation.) I have also cut back on portions, I do not drink alcohol bar the very occasional one on a warm summer eve. I am usually a busy person but I also try to get a bit of exercise such as walking, occasionally the fatigue will knock me flat and I cannot get passed it so give in and wait for a better day I also get the joint pain but as I am older I wonder sometimes if it is arthritis rather than the PBC.

Perhaps because you are at a specilist nurse led clinic your surgery does not want to get involved (if you are in the UK it will almost certainly be down to funding).

hope this is of some help to you.

best wishes

[Debbiem40]

I was diagnosed in 2003. I used to have annual checkups at the Liver Outpatients and a blood test. Then since about 2014 (after having missed a couple of appointments) I have been going every 4 - 6 months, but I think this is because I'm now on Urso.

[badpiglet]

I was a bit confused about my appointments too. It's a bit strange that your bloods weren't taken on the way out of your last hospital appointment. That is odd.

I'm not sure what the procedure's are for seeing the consultant or a nurse, but whatever they are, they're not communicating to the patients, so we're left high and dry wondering. I think (not 100% sure) in Exeter, they are alternating ie see nurse one time followed by consultant the next.

However I was puzzled as after last hospital visit, that a next appointment date didn't follow in the post. I phoned the consultant's secretary and she told me that they don't make appointments straight away now, that the date on the next appointment will come through 'nearer the time'. I said, as I was on the phone, could I get a date now and she was very nice but said she would be in trouble with 'management' if she did.

Maybe have a go at ringing your consultant's secretary or specifically ask your GP to write to your consultant, requesting the blood tests be done. Sounds like an oversight by someone, but an oversight that is very important to you.

[jrobertson1]

Thanks everyone. Feel better for knowing what other people have experienced. Will make sure to ask for bloods to be done at clinic or get forms to take to my surgery next time. Need the reassurance of knowing that LFTs are OK.