D-I-Y blood test!

[KatherineM_PBC]

Whilst online this afternoon I have come across a UK site that offers DIY blood testing (pin prick) - their liver test kits is currently £29. For those of us who would like to have better monitoring of their condition and find GPs not helpful with recall to blood test or accessing results, I thought this might be a good alternative. I would be happy to do this in between my annual visit to Consultant, of course if levels were elevated I'm sure we could see our GP or call our Consultant in-between? Any thoughts PBCers?

medichecks.com/find-a-test/...

[Hidden]

Hello KatherineM_PBC.

My first thought is why bother if we already have a diagnosis of PBC and then I clicked the link and had a read.

Delving a bit further into it I got the cost to be £249 as reading it states that anyone who has a diagnosed 'liver disease' should do the fibrosis one.

My bloods have never been normal since pre-diagnosis of PBC and since on the urso. They are not expected to return to normal with PBC and mine haven't though they have dropped over time as well as done a bit of up and down bouncing in the last 6 years.

Up until last year I would ring the surgery when I reckoned I needed the bloods doing. I was originally set at 6mths by the consultant in 2011, he wrote to the GP and informed him of this. I then had a bit of downer with the bloods a few years ago and was asked to go in in 3mths so I continued booking at that and always managed to have them done. the GP then arranged with me for 6mths unless any issues.

I'd not been for mine in 13mths until last wk as I simply decided time for someone to remind me as I was informed they would last yr as I was supposed to return around Easter. When I went in last wk., the nurse said she was going to add another one as being over 50 the kidney filtration one is done from time to time and mine was in 2014. (The result was better this time than it was 2014 though nothing alarming as I'm said to be OK.) I'm sure if you think you need some blood test doing discuss with the GP and take from there.

[KatherineM_PBC in reply to Hidden]

I'm not suggesting that anyone just gets a test and tries to self diagnose themselves with any liver condition, but it is because we all have PBC that this option might be relevant to some people. I have read many times on here that people don't have the correct support of their GP/Consultant and don't get recalled for regular testing, also those that do, cannot access the results from their GP and just 'assume' they will be in touch if levels are out of the norm, but it seems we have to all be responsible for our own health. If you choose not to be regularly tested that's fine, but I would like to monitor my levels so I can discuss them with my Consultant at annual appt. My bloods have returned to normal whilst I have been on Urso, and so it would be a concern to me if they became elevated again. Whilst the Medicheck website might 'suggest' anyone with a liver problem get the full test (of course to earn themselves more £££), the basic test covers 20 different levels including Bilirubin/ ALP / AST / ALT / CL and GGT which I thought were those most important?

[Hidden in reply to KatherineM_PBC]

Hello again KatherineM_PBC.

If you look again at the tests you will find that there are additional costs as I don't know about yourself but I've always had the full blood count (FBC) done at the same time as the LFTs and GGT. Up until this time I've always had mine taken at 3 monthly intervals or 6 months but have had more done at the 3mths mark. First time it has been 13mths since my last ones. Looking at the results my FBC is all normal except one (lymphocytes - just under normal as in lower) which for me is a first in some time.

As previously stated, my LFTs and GGT have never returned to normal. But they are still considered 'OK' for PBC.

I think that there might be some err of confusion if someone with a known liver disorder was to start taking private blood tests (unless of course you were a private patient all the time). Besides the point the LFTs can even alter slightly if we take any additional temporary meds.

I've always taken notice of myself and doctors, moreso since 2010 when I started to itch (something that the article re liver testing does not mention I noticed as one of the early symptons) due to the fact of past experience (former late husband) with treatment (he) received.

I know I'd like to have a consultant's opinion re this issue of 'self testing' of which I more than likely won't get but at the same time I pesonally do not fancy something like these tests in-between NHS blood checks.

Yes it is a personal issue. Just not sure someone diagnosed would benefit from it but be paying out for something that I know I couldn't afford when the blood checks are there for us.

[Hidden]

I've not yet looked at the link but would like to say if anyone is not getting regular bloods from there GP or consultant in the U.K. You can and do have the right to chase this up and request the print out.

I have mine done six monthly from the consultant and during the year if I see my GP he always does another one. I get the printouts now and discuss these with the consultant.

I always got a borderline result when I phoned up for results of tests but actually only the ALP is raised at 250 which is now considered normal for me, so as long as it's stable around that level iam considered as doing ok.

On a note of caution for the private ones which iam not against for anyone who wants to do them, is check the parameters used for the upper and lower limits of normal test results. As my understanding is each lab can have different parameters for the upper and lower limits. If these differ from your normal lab your results won't be the same in which case your hospital consultant or GP are not likely to recognise them anyway.

[Hidden in reply to Hidden]

I've been having blood tests for years for one thing and another and have never seen my results apart from when the consultant goes through them while I'm there. Have never been told I can have a copy although I wouldn't know what I was looking at anyway so don't see the need to keep my own copy

[Hidden in reply to Hidden]

It was interesting to get a print out, I just ask the reception at the GP surgery there is a 60p charge though. The reason I got one was I was told by the receptionist when I called for the results , that the doctor that checked them had written borderline no treatment necessary. Which was very odd as I'd been getting treatment for over 5 years at the time so he obviously never looked at my notes to make that assumption. So I prefer to look now, they are quite easy to read.

[Hidden in reply to Hidden]

Hello essexmike.

I have only ever requested my blood results since diagnosed December 2010 and I got all my results from during 2010 at the time. In the past when I've had the odd one for a couple minor bouts of iron deficiency I never bothered.

The print outs are actaully not that bad. You get what is supposed to be the normal range readings for each one done and you can see at a glance (well I can on mine) the ones that have flagged as not normal as they have an asterisk.

One thing though is that it can vary between patients in how they react to the readings. I've always been curious and though I used to get a bit deflated at times or happier when they were better over the last 6 years I just got into the habit of not bothering after a glance through.

When I went for bloods last wk it had been the longest between repeats (13mths) but it is in part to I got fed up of getting asked question after question when I contacted the surgery about going in for bloods when the info was there but it was never read.

My most recent ones I've declined going in for a print out (I got well known for wanting a print out!) as they are now online so I could print my own out.

[GrittyReads]

I agree with Candy12. It is your 'right' to get copies of all blood tests. I just ask at my GP's reception when I know the tests are back. If I've forgotten, my GP does me a copy next time I see them. And yes, knowing I'm at risk, if I have anything other going on, my Gp usually throws in a full set of lfts. If you get a copy of the results, and are not sure about what it all means, talk to the 'PBC Foundation' who host this site on 'Health Unlocked' - link at the top of the page.

If GPs are refusing to give test copies, or to explain them, or to give further tests if symptoms etc have changed, then the solution is to call those GPs out/complain/take action. Change to another within the practice - it's your right - or change practice. Better still, talk to the 'PBC F' (and maybe the BLT), get up to speed on your rights, (likewise a friend or relative) and go along with a friend and state your concerns - or put it in writing. The NHS is incredibly stretched at the moment, but we still need to both support the NHS, while also protesting if full care is not being given. Nb Any one in this situation can also contact their consultant/consultants' secretary, to see if they can help, advise, or even chivvy the GP.

I know you are suggesting the self-testing for the benefit of others who are not getting good help from GPs, but as Peridot has said , I've found these sites are very 'hidden' with regard to the charges, and the idea of making you have more testing done, when you know what your condition is, and what the general tests needed to check you are ... is absurd.

Finally, my recollection of these sites is that you have to take the self-test kit to a GP or equivalent, and then pay to get their nurse/phlebotomist do the test ... so why pay ridiculous amounts when it is your right. We cannot just go sticking needles into our veins - many people would probably end up with blood poisoning or damaged veins.

[KatherineM_PBC]

For those who didn't read more about the kit on line, it is a finger prick test to be done in the convenience of your own home. My experience of going to the hospital for an intravenous blood test is I have to put aside several hours as there is usually a queue of about 30 people, so this might be more convenient for some, and especially those who don't like needles ;-)Free test results are available online which you can print and take to your GP / Consultant if necessary - although the normal ranges might be different in different labs, people would know if their own levels have increased/decreased. It wouldn't surprise me if there is some enterprising NHS trust making a few ££ from running these tests, in conjunction with Medichecks, (the same with Vit D testing kits you can buy on Amazon) and it is a disgrace that more people are being driven to private medicine, but with Jeremy Hunt's latest ideas, it's only going to get worse.

If only all GP surgery's were like yours - it is only now with more awareness and concern for my conditions that I am taking control, as I have never been monitored correctly by my GP for the 2 auto-immune problems I have...... and sadly I have had a couple of PMs from others who suggest the same.

Good luck to us all!!! xxx

[Hidden in reply to KatherineM_PBC]

Hello again KatherineM_PBC.

Although I didn't want to your posting managed to have a couple more things pop into my head since I last posted abotu this yesterday.

I'd be interested to know what the lab actually could respond with if you were to email and say you'd PBC.

Also I'm a bit uncertain about blood being taken via a finger prick myself for this. I say this as when we all go to the GP surgery or hospital they take blood vials as opposed to doing it this way.

I also wondered if a doctor would take the results as is and not request their own as this is a possibility.

Yes I know how hard work it can be chasing up at a GP surgery as this has been the bane of my life since 2010 when I was diagnosed with PBC. My GP seemed interested for awhile but once diagnosed seemed to be a different matter as for a start he'd not heard of PBC before (I don't see that doctor any longer, I switched surgery for another reason).

I usually take it upon myself to contact the surgery when the bloods are needing doing and in the earlier days I just did it when I wanted which was 3mths. I did take offence when the one GP I did see a few times started to just put a note on the results and no-one contact me of which I'd then to read off the print out when I picked it up.

[ClareBenyon]

Thanks Katherine! I think it's a marvelous idea...thank you for sharing! I totally agree with you. It's all very well if you are getting the right care from your GP, but as you correctly assume, many do not. Thank goodness I only need rely on my GP for blood tests; he follows all my heptologists instructions without question, however I live in a rural area and have to travel miles for regular blood tests, it's both time consuming and incredibly inconvenient. The last results were 'lost' just before I was due to see my heptologist in London, so half a day wasted, grrrrrr! I already keep my own records of blood test results and can understand them fully, so this would be perfect for me, although I appreciate it may not meet everyone's needs. I am lucky enough to see a marvellous heptology professor, so I will run this by him and let you know what he thinks! Thanks again. 😊 All the best, Clare.

[KatherineM_PBC in reply to ClareBenyon]

I would be very interested to know what your Hepatology Professor thinks Who do you see and at which hospital please - I'm close to London (PM if you would prefer?) x

[ClareBenyon in reply to KatherineM_PBC]

PM'd you!

[Skypony]

Hi KatherineM_PBC

Having increased choice is usually a good thing, so thanks for mentioning this.

I recently did pay for a private blood test (included consultation with a well-informed private GP) because my own GP said he couldn't request it, it was too specialised. The two results I wanted were not in the regular liver panel but often used alongside it. The GP would have referred me to a GI consultant for this, but that takes time, and I didn't want to wait.

This raised the question for me of which blood tests my GP is 'allowed' to order, and I did wonder if what he said was correct, but it may have been.

Now that I've been referred, I doubt I'd need to get a private test again, and it was expensive, but quite empowering though!

x

[DonnaBoll Administrator]

Is it common practice for others not to have liver enzymes checked every 3-6 months ? This is the Standard of Care.