Self testing question: Hi everyone, I... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Self testing question


Hi everyone, I think I said a while back after years of trying, then surviving CAPS I finally got to home test my own INR.

My issue relate to my local warfarin clinic where I email my result...despite me advising them my consultant insists on weekly INR tests, they have stated they doubt this is so and keep sending 2 weekly dates for my tests. I tend to ignore them and send results weekly. I'd like to test twice weekly however and have asked about self management instead....they don't seem keen and say it's down to my GP who has overall responsibility for me!! Any thoughts anyone, it seems daft to have the ability to test my INR more frequently and not process the result in the event of an INR change...can anyone advise or share their experience please? Thank you


11 Replies

Hi Danny

I had a similar problem. Firstly you don't need to be tested more than once a week partly because what you take with regard to warfarin shows up 3 days later according to my consultant.

I also need to be checked weekly, well to be honest it is left to me.

The haematlogistd give me dates from 2/4weeks. I just ignore them n do my own thing. That way I'm monitored.

My consultant refuses to let me have a self test as he says in they are not accurate enough n personally I don't need one. I know as soon as I get up in the morning how bad or am.

So don't worry. Once a week blood test and see how you go.

Regards Diane

lloydyuk in reply to diane1428

Thank you for your feedback Diane, I had wondered myself about the frequency of tests and the time for your system to adjust to any alterations. I did what you are with regards ignoring dates given and until recently had weekly venous blood tests. I'd been doing this for 3 years however and my arms were/are a mess. My concern is if I need hospitalisation and there are no decent veins to use due to scarring etc.

Hope your keeping well

diane1428 in reply to lloydyuk

No what u mean abt arms in a mess.

I don't know if yr the same as me but if my inr dips I know within a very short space of time so I can Gaige when o need to test and my blood dept in hospital will do it immediately .

Apparently there are plenty of spots they can take blood from so not to worry too much

Keep well

Regards Diane

Hi I self test depending on the result I either get told by the anticoagulant clinic to do it again in one or two weeks

If I feel it's out of range I test inbetween I am usually right

I send the result via email and also add what I think my dose should be increased or decreased by giving the clinic the confidence that I know what I am doing.

Talk to your GP showing him/ her the evidence

Good luck

I had problems with my clinic - my consultant said I should normally test weekly, every 3 days if I am out of range and that range should be 3.5-4.5. The clinic insisted on monthly and that my range should be lower and would change my doses seeminly at random so I spent most of the time pinballing between too high and too low - I complained and eventually they rang me and said they were no longer happy to manage my doseage so I self manage and just pop in twice a year to check my coaguchek is still accurate and I now very rarely out of range. I have to inject if my inr is under 3 - I keep having to replace unopened packs because they are out of date whereas previously I was using them fairly regularly. I wish I had gone self managed earlier - it would have saved a lot of heartache! If your GP isn't keen, try and get your consultant on side and to write to them.

lloydyuk in reply to LydiaJ

Thanks that's really good advice I like the sound of what you've said, I don't think warfarin clinics know about APS as im constantly having to remind them of things.....perhaps I'll send them the APS leaflet I have come to think of it.

Quick question...for those who self manage, how do you determine dosage of warfarin please? Is there software or is it done through experience?

LydiaJ in reply to lloydyuk

I wasn't taught how to do it (I argued a bit too much with the clinic so I think they just wanted me gone) - just used common sense. So if my inr needs to go up then increase the doseage by 1mg across a three day span. For example, at the moment I am taking 5,6,6 ( another bug bear with my clinic - they insisted in giving doseages on a weekly rotation instead of three daily and insisted I stick to it so I never had a consistent doseage!) so if my inr needs to go up I would swop to 6,6,6 or down then 5,5,6. Then I'd test at the end of day 3 and adjust again if necessary. I would ask for training if you are unsure but I think it is mostly common sense.

I used the Oatbook app to keep track of my inr and dose (sadly it's only available on apple devices but I am planning on developing my own android/webbased version when I've got a minute). It's not perfect but it's the best solution I've found so far. I've been using it for over a year (used a combination of a notebook to store my inr and google calendar to remind me of the daily doseage previous to that) and I have no complaints really. :)

tim47 in reply to lloydyuk

I self test every other day as I was advised to do by Prof Hughes.

My docs are comfortable with that. I have a cross check venous test every new batch of test strips, so about every hundred days.

Until a few days ago the difference was usually 0.1, once 0.2. test last week saw my self-test at 4.6 (target 3.8- 4.0) and my GP rang me to check that I was dealing with the high INR, and that it had come back from the lab at 4.9.

I decide my own dose, I used to do so when I was only done via a lab, some 40 years now. I try to make small changes to avoid yo yoing. I am fortunate that my doc recognisesthe considerable benefit of self-test, she knows I will be on top of it pdq and that she need not book me in for further checks whilst we gt back on track. (It is also very helpful in many other situations and when I expressed concern that NHS funding issues might at some point threaten my supply of test strips she indicated I need not worry on that score)

I dropped my dose by 1 to 3 and then 4 from the usual 4/5, and today I am bang on target again.

I have never found any suitable software for help in determining my dose, I have just used my experience and take into account how a deviation may have come about, things like a low k diet for a few days, very occasionally alcohol (norm is a max of two pts a week) and the like.

I know warfarin doesn't take effect immediately but I'm not so sure it takes three days for any effect. Certainly if I miss a dose I can be close to a dodgy 3.0 and in need of heparin within 24 hrs.

Some affordable software to help determine dosage is overdue and would be welcome. There is a problem of GIGO though, garbage in garbage out - get anything wrong and the recommended dose will be wrong too in all probability.

Been self testing for 7 yrs now. I have a contract with the warfarin clinic attached to my surgery and I call them with my test results and they tell me what dose to take. I have my machine checked every six months. Never gone more than two weeks without testing, but more often if necessary like at the moment when I am on a course of antibiotics. Have never tested more than twice a week as have been told it takes three days for changes to show.

My clinic would not support me if I self managed. But I wouldn't consider it anyway as I wouldn't feel confident enough and don't want to put my life at risk with a stroke or bleed.

Thanks appreciated reminding my local medical centre of this certainly pushed things on after 10 years of trying. Here's to sore finger tips rather than nasty arm veins-ha ha

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