Are blood tests accurate?

[cazz22]

Can anyone help on this as my reasonably knowledgable (on pbc) specialist has now retired and I'm at the mercy of two who I seem to be advising !!!

My 'new' consultant says my liver is 'pristine'.he can only deduce this from my blood results as my last scan was this time last year.they have only been mildly elevated(120 ggt)at diagnosis to present(80 ggt) now Babur I'm sure I've read some where that blood tests are irrelevant as to how the pbc is progressing and people with near perfect bloods can be further down the road than they think.anyone know if this is true?

[Hidden]

Hello cazz22.

Well I do think that perhaps with urso we are cheating a little but only a little. With improved bile flow due to the urso I think it means the liver is not being as stressed and we have a better digestive system due to it.

I do think that improved bloods do mean that we are better than we may have been (my bloods in 2010 the year I was diagnosed were abnormal but judging by certain other abnormal LFTs I have read about they weren't abnormally so).

The GGT is done with regards to liver inflammation apparently and mine after 5yrs is still abnormal but better than it has ever been. It is certain bloods that are ntoed in PBC, bilirubin being one of them for changes. There is another one but not sure now what that is.

I think with scans now a pretty good picture alongside bloods can be known how we are doing. I also would expect other symptons to start appearing with time.

Personally, I don't bother. I am not interested in knowing any stages of PBC (never had biopsy) and nor do I really want to either.

I go day-to-day and month-to-month and now been itching for over 5yrs., diagnosed for 5 later this year, I just take the time to enjoy life and crack on with it as nothing else can do given at present the PBC is here to remain with me for life regardless of my demise that might not be due to PBC eventually unless someone out there finds some cause or some way to halt it.

[susanburgess]

Contact pbc Foundation they might know of a specialist in you area who can help/

[GrittyReads]

I agree with susanburgess. Talk to the PBC Foundation.

I would have all your blood test results to hand, as other levels are beside GGT are important. You also need to know the units your testing lab uses, and the ranges your lab considers to be 'normal'. If you have not done it already, get printouts of you current and past results from you GP - copies should have been sent to them if you are in the UK. It is your 'right' to have a copy of all results, though they may make a small charge for copying, etc.

I assume you also test +ve for AMAs. Have you been having regular ultrasound scans of your liver? Ever been offered a fibroscan? Talk to the PBC Foundation, they will know all the right questions to ask for your case.

[cazer]

Unfortunately a scan is a very course measurement so it doesn't show up finer changes. The only thing you can really go on is ltfs but even those can be misleading . I recently had a similar problem my consultant in Birmingham said my liver a nd function was stable but not long after that I was diagnosed with portal hypertension and varices stage 1 so the consultant was obviously not so spot on after all.it was the general med consultant who thought that things might be further on than the liver clinic thought. So not sure what the answer is I feel that ive lost some faith in liver clinic as I end up seeing a different consultant every time I go. Well good luck I hope you get some answers. Cazer.

[cazz22]

Thanks for replies.i actually feel like what's the point in going to hospital.i may as well just have blood tests and let them phone me with results!i was literally in his office less than 5 mins on Friday.tried to tell him I felt worse than last time due to aching/painful legs which he said was due to gaining 6 lbs and not Pbc as my results were good and my liver pristine!i also asked if I should have an increase in urso(only on 450 mg due to capsules upsetting me but tablets suit me fine) and he said no cos my bloods were good.trying to find another hospital /consultant in South Yorkshire area as we speak.anyone recommend?

[Jojowen]

Hi Cazz22, it is so annoying to be told that things are not PBC related when they in fact started becoming a problem at the same time. The painful legs is just one example! Our legs and feet and joints do hurt! And it has to be PBC because many of us suffer from it! It is really frustrating to be suffering from a condition and to be constantly told that your symtoms are not related to it. I get that it is odd. Liver affected and then you get leg pains? But that is precisely why it should be looked into. What is that all about? I would really really like to get in touch with a doctor who was truly interested and who at least tried to put all the pieces together. I get that there is nothing they can do, but it would be nice to have it recognized and explained. My consultant said my "wooly head" and bad perception (I hurt myself a lot this winter, fell over, crashed into things) was due to depression. I am sorry but I am sad that I am sick, but I am not depressed! I was extremly tired because I tried to live like before I was diagnosed. I finally met a GP who told me to rest instead and now I plan to rest and it has made a major difference. The lack of understanding from my gastro sometimes feels intentional...maybe he doesn't want to be bothered with my ailments? I am not sure what is the best thing to do, keep bothering him or trying to find a really good GP?

Sorry about the rant. Just really sick of feeling I am not being taken seriously.

Have a great day today!

J

[cazz22 in reply to Jojowen]

Hi jojowen.i share your frustration and feel free to rant.i haven't got to the fatigue yet.quite frankly that scares the hell out of me more than the pain does.i pray for a cure or at least some help other than urso for us all but I'm thinking unless it's stumbled across while testing for other things our numbers are so few in the grand scheme of illnesses that we won't progress on things rapidly.you take care and have a rant anytime x

[posh]

Cazz22, I agree with Grittyreads and susanburgess, if you haven't joined the PBC Foundation, I would advise you to. Its free to join and with that you then have access to the helpline, The Compendium, Living with PBC and up to date information with regards to trials and research and medical information. It can be frustrating when you experience a medical professional who isn't as informative and helpful as they possibly could be.

The Foundation will give you help with questions you possibly need to ask your consultant to enable you to live, understand and cope with your condition,

Best wishes

Posh

[cazz22]

Thanks posh.yes I joined the Pbc foundation in 2013 and I take part in several trials.ive had to educate myself on Pbc as gp's and other doctors seem very vague about the whole thing.it was on an american website that I read you can have near perfect blood tests with Pbc (due to urso) and be near the later stages.i wondered if anyone had actually encountered this