Checking INR: I had a P.E. after... - Anticoagulation S...

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Checking INR

Stanman profile image
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I had a P.E. after travelling to work in Canada. I am being tested regularly there and every time they take a phial of blood and send it away for testing. I have to visit a local doctor to get the results which is tedious and expensive.

What test machine is available to buy so I can self test and visit the doctor infrequently and only to get more warfarin. Also they didn't give me the yellow book so I don't have visible means of telling anyone I am taking warfarin

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Stanman
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Stanman

The most commonly used machine in the UK is the CoaguChek XS supplied by Roche Diagnostics. This is available for around £299 in the UK, can be paid for over 24 months with no interest and the strips are available on prescription in most of the UK. With this and some training you can monitor your own INR and only need to get a monthly, Warfarin prescription form the GP. I have done this for 15 years now.

The first question you need to ask however is how long will you be on Warfarin? In many cases of a PE Warfarin is prescribed for only a few months in which case you might be better to stay "in the system". If your doctor tells you, when you ask, that you will be on Warfarin for the long term only them would I recommend looking at self monitoring as an alternative.

If you are now back in the UK and do stay within the NHS system for testing, then your GP should refer you to the anticoagulation clinic at your local hospital who will issue your Yellow Book and instructions. You may then be able to attend your GP clinic for INR testing which may well involve only a finger prick test and instant result as most GP practices are now using the CoaguChek XS.

Best of luck with it and do let us know how you get on.

rainey999 profile image
rainey999

Unfortunately, it can depend where you live. In nottinghamshire they do not give a yellow book, just a folded up piece of papef, they only prescribe warfarin in 3mg tablets and my gp will not allow me to self test. I have been on warfarin for 20 years, since having an accident at work age 35, was a teacher but they refuse to allow me to self test az they could 'mis-hear' my reading for testing, i suggested email, but that is not acceptable.......it does seem that this is the only counth where you meet witb such resistance, so hopefully others will live in more 'enlightened' areas.

in reply torainey999

Dear rainey999 - I too live in Nottinghamshire (Sutton-in-Ashfield) and had no end of trouble when we first moved here six years ago. I already had a Roche CoaguChek meter but the practice we were with at the time - and the doctor/consultant at Kingsmill hospital - refused point-blank to even speak to me about self-managing or self testing. Eventually, I found a surgery who used the Coaguchek meter themselves, they agreed to my self-testing and so I changed to this GP. Now, it is difficult to get them to prescribe the necessary re-agent (test) strips I need - presumably in view of the cost. The whole business has been -and continues to be - an utter nightmare. Doing a test using the CoaguChek is simplicity itself and not unlike the BM fingerprick test that a diabetic does daily. At one point, I was told I would have to go on a course in BIRMINGHAM before I would be considered for self-testing; impossible, because I have had a stroke! I am very difficult to get blood from and before I started self-testing, I used to dread the procession of nurses who came to my home in order to try and draw blood from me. My hands were black and blue and they tried my feet, my neck and God knows where else. It takes me all of a couple of minutes to do this with the CoaguChek - and no stress whatsoever. I just cannot comprehend why there is such opposition to this procedure. OK, I agree it's not for everyone; but if you're of average intelligence and with most of your faculties, I honestly can't see any problems - except those presented by the medical 'professionals.'

in reply to

G'day Ampex,

Just read yours and rainey999 posts and I couldn't agree more. I had the same experience when I moved from east Surrey to Cornwall in July 2012.

In Surrey my GP’s practice was fully equipped with Coaguchek XS devices, all practice nurses were trained on the equipment and on the use of the software loaded onto the practice computer system. They were also fully trained in giving anticoagulation advice. Further they also undertook the training of patients (like me,) who chose to buy this device and self test, the nurses provided all round support for patients and checked calibration of the device twice a year. Nothing was ever too much trouble for the team in Surrey.

Then I retired (or more accurately semi retired) and moved to Cornwall, 10 miles from Penzance. Bloody hell - what a difference - what a total disaster it is down here. My local practice only undertake the Venous draw technique, only on a Thursday - send phial of blood away to a lab and wait till next day, go and collect hardcopy results but only between 11 am and 1 pm at local surgery. For me at least this has been revised and I get sent emails. Wow ! Being sent emails - that’s pretty 21st century stuff.

Anyway, I decided that I’d put up with this rubbish but decided to monitor each test with my Coaguchek XS POC device so that I could be sure that while each INR reading may not be the same the correlation of both sets of results would be. Then two things happened. NICE released their guidelines in Sept 2014 on Coaguchek XS (DG14) and my employer a month later asked me to work all year round.

I have now written to my GP and told him that where an INR appointment clashes with my work commitments or overseas travel (I often go to Australia) I will cancel the appointment and self test with my Coaguchek XS device and where appropriate manage my own doses. There are both Medical calculators and Algorithms available which safely enable me to do this. The only response so far from my GP has been well, when you have this conflict give us a phone call and we’ll discuss it. Meanwhile I have been putting pressure on my CCG as to the position they are taking with NICE Guidelines DG14. Not very encouraging response so far.

I am quite determined not to have my life governed by AF, by Warfarin, by a parochial minded GP or by a politically minded CCG. One way or another I will get in Cornwall exactly what I had in Surrey and what DG14 empowers me to do.

A NHS (National Health Service) - huh ! Its a bloody disaster. National in geographical concept - yes ! Health Service - it bloody isn’t.

Apologies for the long post - not any easy issue to keep short.

John

SongofSongs profile image
SongofSongs in reply to

It would be a much greater disaster if you lived in the USA and had to pay for everything privately, or could not afford the insurance premiums which in any case do not cover everything, especially chronic conditions.

The NHS is not perfect but much better than having solely private provision, which is profit driven not patient driven.

rainey999 profile image
rainey999 in reply to

It just is so beyond belief- particularly when Nottinghamshire actually have it on their list of medicines etc they CAN prescribe.

I have been on warfarin for over 20 years and will be for life - I just want my life back!!

Do you also fall under their ridiculous policy of only prescribing warfarin in 3mg tablets and expect you to break them in half - then wonder why your INR is not stable ? I'm looking to move to Derbyshire (I live in Huthwaite but have to go to a GP in Skegby because 10 years ago the Huthwaite surgery deemed I didn't take anti-coagulation seriously - they couldn't understand why I missed some tests and didn't call and cancel - the fact that I had a job in Nottingham and kept getting stuck in my car on the M1 and so couldn't call whilst driving - was inexcusable (perhaps if they dosed warfarin more accurately - I wouldn't have needed weekly tests?) :)

in reply torainey999

Not sure to which surgery in Huthwaite you are referring. I am currently with the Brierley Park Medical Centre on Sutton Road, Sutton-in-Ashfield. The doctors there are amenable to my self-testing and they are the only ones I could find prepared to do so which are local, having previously been registered with another nearby GP who wouldn't even consider it. It works well in that they call me for a Coaguchek reading every couple of months or so and vary the Warfarin if necessary by reference to the surgery software (presumably INR Star), notifying me of any adjustments they wish me to make to the dosage whilst on the 'phone and confirming this by letter. I must confess that I do a bit of unofficial 'fine tuning' myself and manage to achieve very good INR results which are always close to my target - but it is made awkward because they only appear to prescribe 3Mg tablets here in Nottinghamshire which, as another subscriber to these postings has already pointed out, means you are faced with having to break the tablets into smaller pieces if you feel you don't need this much to bring things back to what they should be!

Why this approach is not universally adopted is a mystery though. I have never found a problem self-managing or self-testing and it is a much more convenient way of going about the INR test. Assuming you are reasonably dexterous and of average intelligence, you should have no problems at all and I have found it to be a much better, less stressful way of testing than a venous test. If you are able to vary your Warfarin dose within upper and lower limits set by your GP or hospital , you will achieve really good INR results.

Pete

rainey999 profile image
rainey999

Apologies for the typos :(

Stanman profile image
Stanman

Thanks for the info, will be back in the UK in August for the foreseeable future so once my GP gets a hold of my hospital records they can then start to monitor and it'll give me a chance to get home early.

I had a check when I was back in May with the pinprick, so easy! Why isn't this a standard thing around the modern western world?

I'll post again to let you know what's going on.

Thanks again

goodnessgracious profile image
goodnessgracious

I too am a long term Warfarin user - 16 years to date and will be life long. My area does not use self checking and I have o go to a Clinic every 3-4 weeks for blood testing with the old strap round arm and phial of blood taken. One of my veins is now too scarred to use and the other arm is catching up! I have offered to pay for my own machine but the clinic refuses to be a source of telephone reference should I ever need to refer to them if a reading is way above or below normal. Feel stuck in a time warp.

Barnacle4bill profile image
Barnacle4bill

I am so very interested in this subject as I have recently moved to dubai and am working out here for a couple of years. I take about 8mg of warfarin daily following replacement of a heart valve 4 years ago so will be taking it for the rest of my natural. Getting INR is a bit of a nightmare out here, as I have to see a doctor every time and he keeps prescribing all these other tests, which imho has more to do with revenue than my good health, but perhaps that's me being cynical!!

I email my results to the warfarin clinic in Salisbury where they were always done since my operation, and they send me back my dosage. They do ask for fairly regular tests and I know the benefits for this under my health insurance out here will be breached soon. The self testing would therefore seem a brilliant solution for me. Has anybody any advice on doing it when out of the country and where to get the self testers from?

Many thanks one and all

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