Sticky Blood-Hughes Syndrome Support
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November INR Chart:

November INR Chart:

My treating neurologist who prescribed the plavix ordered a 7 day “ double test “ vein value against my home checker coagucheck Xs .

The finger prick value is quite labile... most of the time, not always. ( how inconsiderate not to always be out of whack.)

It was explained to me recently that the vein value itself, and just looking at those numbers alone , independent of what craziness the finger prick values were reading, were fairly consistent. That’s a good thing but unless you go get a vein draw every day you still can’t know where you stand . I guess just keep finger prick value close to 5, but some days there is only 2/10ths of a discrepancy... that would put my True vein value INR at 4.8, which is too high, and my hematologist will not like it.

This INR, showing in quite high enough to prevent this kind of wide spread systemic clotting, coupled with the labile nature of my INR on the warfarin, is deeming it a medication failure.

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The PT/INR is that a fingerprickvalue?

For me that is too low but you know very well that we are different and I have a big difference between my fingerprick and my vein-values (but all the same the same as to how high the INR is).

A high INR makes a bigger difference and I have done so many double-tests during the years so I have a "curve" to look at that tells me where my vein-value may be at that special day.

I have never had a bleed and I have been lately a bit too high with my INR and now I reduce the Warfarin dose a bit. I take around 34 mg Warfarin a WEEK. You are 48 and i am 73.

What does IV or FP mean?

It could never be an exact number only do not let it go too low.

Do you feel when you clot? Or do you see it on your body? When I am too low in INR I get my neurological symptoms back.

Hope you will get help with this problematic situation as soon as possible!

Big hugs from Kerstin

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I feel horrible- veins are clotting like crazy- I have posted a few posts today because I’m needing some help.

My current hematologist thinks my INR is too high! He can refuse to keep me as his patient if I don’t comply. And... he refuses the clopidigril the neurologist prescribed. I begged for an appointment early on to discuss- he will not give me one.

I think we have to make a change- we’ll- my sons Pedi hematologist is telling me to use another hematologist. I have posted the new proposal.

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The Doctors (Hematologists) are afraid that we shall clot. They do not understand that we need to be on 4.0. Who is your actual APS-Specialist now? Refuse clopidogrel. Yes he is afraid you will clot.

Better change!

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Do you perhaps mean afraid bleed?

I don’t really have an APS specialist. Well, I do actually have one hematologist in Florida. I will have my new treating hematologist give him a call. ? I have no idea...

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IV means by vein- vein value. FP means finger prick.

They don’t even give me a chart here. I make my own.

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Thank you, I put this on just for you!

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You have a very small difference. Very stable vein-values as you told us before. That is really good.

Do not forget to rest also if you can.

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Thank you. I had to work for a couple of hours as my employees would appreciate payroll checks signed! Vendor checks signed...

Then hospital...

The entire Brachial is reclotted in DVT. The leg is likely in DVT. Not showing but they said it’s compresding because maybe it’s too fresh. Definitely something is wrong. Not sure what we are going to do yet.

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Wish I could help you. Still you are writing good and understandable English and I think that if something was very wrong you could not be here writing all you do.

A big hug from me!

Kerstin

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Thank you, Kerstin

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Great advice Kerstin. MaryF

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KellyInTexas i just read your posts from today and said a prayer you find some answers, even just one, but a major one. I am so sorry you are going through this. Is your hubby now with you? Thinking of you, as always, Cindy

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Thank you- yes. Home now.

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I don't think there are any fixed guidelines / protocols yet for handling the offset between IV and FP INR, but I know that the senior haemo in charge of anticoagulation in my area will not allow anyone with offset regularly 1 or more to do FP testing at all (selftest OR in clinic).

Your offset is very labile and comes close to 1, my guess is that if mune was like that they would ban me from FP testing.

My offset is low and stable but I have had (when they were dual testing me) one "flare" when it went up to 1.3 but came back down next test (which was a week). The flare, if that is what it was, gave me no other symptoms at all. My dose is pretty stable, so my procedure is that if the self test result suddenly goes up I may accept a small one-off dose reduction but nothing more until confirmed by venous test. Hasn't happened again yet...

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I call and report in to my hematologist s nurse Belia every Thursday. I’ve learned to Try keep finger prick at 4.8- 5 thanks to a few other women much like me here on forum- mainly Kersten and British Kelly ( Yllek) .

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This was incredibly useful. Better than any doctor has ever explained.... thank you so much, Ray.

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You are having a rough time of it. I got to thinking (very hard for me at times!) when I had my Coagucheck, I had a visit to the Roche lab in Sydney. The lady there explained that I should 'milk' the finger I'm pricking to get the blood at the end and then prick. If no usable drop came out then DON'T keep 'milking' to try to get a drop, as the blood won't give a true value. On Warfarin this shouldn't be a problem to get blood but sometimes I did hit a spot where the blood didn't immediately come forth.

This is merely clutching at straws, I know, but could it be a reason the FP is all over the shop? Also the machine could be faulty or need re-calibrating. The strips could be a faulty batch and tech gadgets we place our trust in don't always live up to expectations!

Hope you get some answers to your very scary symptoms today (Thurs).

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Ok! You have hit some questions I have had. I do have to “ milk.” I think it’s because my Raynaulds is ever present. And... have wondered if it would matter. If you look above on the date Sunday Nov 5th I did a “ triple test.”

I asked the nurse to take some vein blood and put it on a test strip . So I did a coagucheck XS check with vein blood....you can see it was the same as the finger prick blood value. This is not the first time I’ve run this little triple test.

I always bring my home tester with me and check with the lab at same time.

I can’t say if test strips are a bad batch, but when I get new batch I religiously check. I always have the same value differences.

I’m suspecting I have the lupus Anticoagulant Antibody, But does that mean the vein value itself would also be labile? I’m just now learning this- I always just though it was the discrepancy between the two. I’m still learning. I guess it doesn’t matter- I was just hoping to avoid shutting down the immune system and am trying desperately to find a way to make warfarin work...

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I never had the same INR twice (or even near it) or stable doses of warfarin as a result but the vein test was usually (I think, because it was a few years ago) about .7 difference lower. Can you get in touch with a Roche lab near you? I found they were extremely helpful and worth the hours drive to see her. The lady compared both her and my machine and spent about an hour going through the 'proper' use of machine. Looking at your results it seems the machine is OK? I only get Raynauds in my right hand and foot so was able to use left hand. (Even that one played up sometimes!)

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I have no idea where such or if a place exists. How do I find out? My nearest city is San Antonio Texas- approx 60 south east of me.

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But I got same results on doctors coagucheck this am.

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Now you're really testing my brain!! I have an idea that it may have been with the machine warranty - Had a list of countries and free call numbers to try if you had problems. usdiagnostics.roche.com/en/... -quick look here gives you contact for US and if you scroll down their site map to the coagucheck xs (or whichever one you have it will also give patient support info. (copy and paste the above link) I'm not greatly familiar with US geography but there was something in my searches for Dallas. (I know Texas is big!)

Good luck-even if the machine is faultless it's something to rule out.

You may be a weirdo like me and cautiously try the NOAC's (they are called 'Novel' Oral Anti-Coagulants here rather than 'Direct' DOAC) But you already know there's no one magic fix.

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Have you tried applying a heating compress prior to sticking, get it warm then milk to self test? The heat may help, it use to help me when someone was a very difficult I.V stick. Let us know if you try it and how it goes for you. Are you experiencing any other symptoms since yesterday?

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Yes, often.

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Yes, left arm is clotting And likely micro liver clots. Emergency work in with internist arranged by hospital was today but can do nothing because INR is 4. 8 by FP.

He arranged Emergency heme appointment first thing Monday morning as everything is shut down here for thanksgiving holidays until then. I think I’m doing ok though.

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I will be thinking of you😮enjoy your family and try to relax as best you can.Cindy

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Hi there,

Remember that our most important thing with this illness "anticoagulation" is very good as to what I can hear and see from your posts. Your head is working very well also.

You will be better soon.

I think of you also here. We have a "black Friday" here in Stockholm tomorrow. Solds everywhere in all the big shops.

Hugs to you my friend!

Kerstin

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Do not forget to take it easy!

Kerstin

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