Self Testing INR with Coagucheck - Off by set amount or totally random?

[gazaeee]

I just read that the Coagucheck may give inaccurate results for APS

Does anyone know if it's usually out by a set amount or totally random? Pretty pointless device if it's random. Was hoping to baseline against my next INR at the surgery.

[Mermaidatheart]

I usually use my Coagucheck when I also have a blood draw. That should give you a basic plus or minus of how "off" the home tester is.

If anyone has more advice, please chime in!

[gazaeee in reply to Mermaidatheart]

That would still help because you can just realign. Have you seen a trend when comparing the two?

[Mermaidatheart in reply to gazaeee]

Just consistent plus or minus, that is all really.

[daisyd]

I have a blood draw every 6 months to see if the result is the same it’s almost the same and no change in dose of Warfarin needed

[gazaeee in reply to daisyd]

That's great. I'll still do my monthly at the clinic but it's more for me to know I'm okay for peace of mind

[catno1]

I've used a Coaguchek XS for 12 years home testing as I have Lupus as well. My machine is checked against the professional my anticoag nurses use every year and it's been 100% at all times. After fourteen years of Lupus and APS I can even feel if my INR has moved and the machine is a very handy & safe tool. My arms were a mess after a few years of constant blood tests so I look at it as one of the best purchases I've ever made.

Don't forget your INR changes through the day and as long as your test time at home is at the same time home testing is great.

[gazaeee in reply to catno1]

Thanks for this. Forgive my ignorance but what were you meaning exactly by needing to do it at home at the same time?

[catno1 in reply to gazaeee]

To maintain steady home testing I do mine an hour to two hours after my first medication of the day and always before the second dose. My daily medication consists of six doses of different meds throughout the day and with APS it's best to, as much as poss, take all medication at regular times. Likewise your home INR test. So between taking hydroxychloroquine/prednisolone/etc etc when I first get up and then my second like of meds I test.

If I had a full blood test later in the day I always see a slightly raised INR. It's normal. I was in hospital last November and bloods were taken before my first meds and my INR was always lower. Your medication, food, tiredness all play a role through the day so just maintain regular diet and test times. I had to take 28mg of warfarin for the first few years and as I've aged the dose has dropped to 7mg. My INR spent thirteen years having fun going up and down and now is fairly steady. It's weird I suppose but I can feel even 0.1 of a change.

As long as your machine is checked against a professional one and you keep testing regularly it's much better than a regular test done at clinic. Having Lupus also made it safer if I could home test as my INR has increased rapidly or dropped dangerously at times when I've been rough.

Hope my ranting made sense. Get back to me if not or if I can help in any other way.

Take care,x

[gazaeee]

Yes totally understood this time

I'm now write worried my target is set too low. Someone at the hospital should have increased it after my blood tests positive for APS l.

I worry now that every ache is a potential clot!

[catno1 in reply to gazaeee]

Hi,

Glad it made sense. My range is 2-3. Please try and stay strong. I've had liver failure, kidney infection, a pancreas that turned into a huge haematoma, and other delights over the years. My spine fractured last November with added delight of a slipped disc and bilateral nerve damage. Please DO remember I have Lupus SLE as well as osteoarthritis & osteoporosis. The pain has been hell and the infections horrible but a steady diet, regular testing, maintain good standards and take all medication at the same times, or as close as poss, each day.

In 2005 I had a massive DVT in my left leg. Guess what? No clots since. My present stiffness worries me but I'm as you may have gathered a strong minded bugger so pleased seek advice from your anticoagulants team at your nearest hospital or the hospital that regulates your dose after each test.

I do understand believe me your worries, I was lucky when diagnosed with APS I was assigned a personal nurse who sat me down and told me why and how to deal with the disease. Over the years personal nurses stopped and the whole team can be contacted. Get their phone number and see if one of then can spare you half an hour or less maybe when they can to answer your questions. Keep that number safe.

I email my nurses my result and remind them of my current dose which was what they would of told me on the last test date they then email me back and advise if changes are needed to dose. This is backed up with an automated phone call and a relay report which confirms doses for each day.

If your GP knows APS or you see a consultant always ask as much as you can.

None of above is meant to be patronising I swear, I worry at times as well. It's normal and so are you.

All the best,x

[jmeaj1777]

Since coronavirus hit I had no choice but to buy one on Ebay and seems to be working ok for me. Went to the dr and compared the numbers after and they were only a few points off

[gazaeee in reply to jmeaj1777]

How many points are we talking? Under or over?

[veganworld]

Hi

I have been self testing for a few years now. I have to bring my machine in every 6 months to make sure it is reliable and we do a test both ways. It is always out by .1 ie.. 3.6 on my machine and 3.5 on theirs or the other way around (can't remember) if mine is higher or lower but it is consistent and I completely trust my machine and so do the hospital. I have saved myself from getting dangerously high on occasions and also been able to work out which foods or medicines always affect the range. It is well worth having and if it broke I would buy another one immediately.

Good Luck

Kaz x

[Ageingfemale]

Hiya. I use my coaguchek a couple of times a week, more if I’m not so good. I have the LA which is known for giving different readings. My readings can be as much as 1.0 different to venous test. I keep a written note of my readings. I have a venous test every week at the moment (in normal times it’s twice a week) but the finger prick is useful to just give me an idea of whether I’ve gone up or down.

[Oldfox81]

Had my unit for a year now and got confidence by checking same day as doctors test. Never been any more than 0.1 difference and most times exactly the same.

[judes]

I have a coagucheck and wouldn’t be without it, I get it checked twice a year and despite having being positive for LA it’s only out by btw 0.1 and 0.3 which I can live with and doesn’t unduly bother me. Which shows how different we all are

J

[Portwing]

Mine's always been very close the the doctor's office. I've had it for years.

[mburns1401]

Hi Gazaeee. Some years back I tried self-testing with a Coagucheck and found it was rarely accurate and the inaccuracies were random (off by 1, next time off by 2)—I tested at home and within an hour or two went to the lab and got a pro time.

However, others don’t have this issue and self-testing is a valuable tool to have. It seems there are multiple variations of APS and some don’t work with Coagucheck—a doctor at Stanford University hospital told me that he thinks as the research continues, we’ll learn that what we call APS is really 5 or 6 related diseases.

Whatever the case, I’d try the Coagucheck and compare it to lab results. If it works for you, fantastic. If not, oh well.

[gazaeee in reply to mburns1401]

Yes I'm hoping to check alongside the lab. This week will be my first opportunity to run a comparison. It's really for myself rather than as an alternative to the labs. I'm hoping that I can eventually stabilise my diet and INR.

[BeachHaven123]

Someone died. I don't know who. But if you look through the pages they send you with the meter they will say use a lab. Now, with the covid that is increasingly difficult to do.

Yes, they are off by a standard deviation but if you also use the lab I would think you would be okay. Good luck! This is the pits ! xo Susan

[gazaeee in reply to BeachHaven123]

Frightening! Some in here say they're even able to feel themselves going out of range.

[gazaeee in reply to BeachHaven123]

My first comparison put the Coagucheck over by 0.4

How you're right about being off by a standard deviation. I'll keep running the comparison for a few months

[Jenkine]

Benn using one for 15 years now...I usually run between 0.2 or 0.4 higher that my actual venous blood test. I just factor this in and look at the trend...they do say that if you have LA it can alter the test up to 1.0..if you test with GP or hospital you can plot a trend..best think I ever did was buy the machine...gave me piece of mind..

[gazaeee]

Ok Wednesday gone I did my first comparison test. My Coagucheck gave a reading of 2.9 while the surgery who took it introvenusly gave it as 2.5.

Quite dissapointed really as I did the self test only 15min later but I'll continue to run them side by side to see if the difference is constant