Sticky Blood-Hughes Syndrome Support
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Coagucheck test strips !

Coagucheck test strips keep reading about these test strips have been recalled or not giving true readings ?

Are theses rumours I keep reading true or false ? Email my self test results ever Tuesday to Guys hospital in London

I’m sure if there where any problems with machine or test strips they would have told me 😐 any body else heard about problems with strips etc ???

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Tim there is a problem yes. However coaguchek are not being completely open about what the issue is. They have advised me not to use them and to contact my Doctor.

I’ve contacted my Doctor and he’s happy I carry on using them as he’s not heard anything.

If you’re on Facebook there is a statement from selfiechek, on behalf of Roche, stating there is an ongoing investigation.

Kelly

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Many thanks for your reply

Bit worrying as if my inr drops below 3 I inject with fragmine to protect me from strokes etc

Think I will email guys or contact my thrombosis nurse at st st Thomas Monday to see what they say 😐

Plus seeing prof hunt Tuesday any way to get my result of my MRI scan which I had later Monday 😊

Will ask her then and post what she tells me what to do (regarding coagucheck strips )

Regards Tim 👍

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Yeah same here with having to inject when it’s low so it’s difficult to manage when you can’t rely on the results!

Good luck with your mri result and seeing Prof Hunt.

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See her every 3 months now as have recently been diagnosed with lupus sle 😐

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No not heard anything from my warfarin clinic. Just testing as usual once a week or more if needed. I know from symptoms whether my INR has dropped (rarely goes high) but unless I have an infection or new medication it remains pretty stable.

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Maybe give their help line a call? It might be worth it to hear what they have to say. MaryF

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Which help line ?

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I guess they have some sort of customer support line, never rung them myself. Just found this for you: shop.coaguchek.com/support/... MaryF

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This page is the limit of official information: shop.coaguchek.com/blog/var...

I don't think you will get anything more out of them over the phone - other than there is no recall as yet.

I have heard that strip codes up to 298 (might have been 299) are known good (everything later is suspect) - but that should be regarded as rumour. I am on venous samples every two weeks (+ cross testing with coaguchek), but in practice am going more often as it turns out I have been low. I still test with the machine in between but the results make no sense so I don't trust them.

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Spoke to some one at customer service at coagucheck this afternoon seems there is a problem with there strips over reading then a Venus so is PROBLEM! as if like me your serpose to take fragmine injections if you inr fulls to 3 or below you would think you are ok not to inject as your strips would be telling you where say 3.5 or may be higher

I’m lucky seeing prof hunt tomorrow to get results of my MRI Which I had last Monday to see if I have any more micro clots on brain 🧠 will see if she can clarify things about using strips ? May take my self test machine with me and get a Venus test done and compare the two results

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I think that would be wise to take it along and double test. Let us know how you get on.

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Self tested this morning coagucheck was bang on my target inr 4 😄 asked to have Venus test while at st Thomas hospital seeing prof hunt they emailed me with Venus result 3.4 😐 .6 difference !!! I have to inject with fragmine if my inr fulls to 3 or below . So just as well I asked for a comparison test !!! Because if my self test was say 3.4 just below my Range really it would be say 2.9 and I should be on injections 😐 clinic email and said it would be a good idea for me to contact them and make arange to go to guys hospital with my machine and run some test along side my self test machine . Speacking to a consultant today he told me that some patients had reported had issues with coagucheck machines and one only found out when he had a (clotting event ) 😳😳😳😳

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How did you get on with MRI results?

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First consultant said as I only had mri scan last Monday results would be ready yet as it normally takes two weeks to get results of mri ? Said I was disappointed as I was hoping to see prof hunt as she knows my history ie stroke mini strokes now micro clots ! He went off to see if he could get scan plus if I could see prof hunt

I saw prof hunt and she had looked at scan and where no new signs of micro clots 😊😊

Which is good news plus no need to see her every 3 months any more back to every six months 👍

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> as it normally takes two weeks to get results of mri ?

I speak a little Doctor, may be able to help with that... I think by "results" your consultant meant "the report on the scans by the radiologist / imaging-consultant / whatever they are called these days". Those reports do take a while particularly as yours will have been "routine / out-patient" - they prioritise the urgent ones, if you are not expected to still be around in two weeks, it'll be done faster than that. However, the actual/raw scans will be available to other doctors to look at hours (or possibly minutes) after the scan. Your first consultant wasn't confident to give you an opinion on the raw scans, or possibly wasn't sure he was allowed to, Prof Hunt was. Also with more background knowledge on your case and what they were looking for, you can give a much narrower opinion with confidence, consider level of knowledge / expertise needed for: "the mri shows X Y and Z" vs "the mri shows no change from the last one" or "there are some changes, we'll get back to you with what they mean".

By the way, I'd be wary of your interpretation of the test strips problem - in the space of a few weeks I've had comparisons 0.3 to 0.6 apart (with previous batches always 0-0.2max), but also unless I've reacted really unusually to dose changes, some of my intermediate results are closer to 0.0 difference or even -ve. Maybe my antibodies are fluctuating like never before, but I think it is more like you can't trust the strips to be within even -0 to +0.6 from one strip to the next. Also note my range is 2-3 and coaguchek is known to be less accurate as INR gets higher. Don't know what the answer is, particularly for those who are injecting when low, venous tests as often as you can stand and hope your veins hold out, I guess.

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Thanks for your reply 😄

That’s why I wanted to see prof hunt and not a consultant hoping she could access the scan and interpreted it which she did . Going up to guys hospital Friday to sort my machine out . Can’t be left as if it’s reading 3.5 at the bottom of my range but Venus is saying 2.9 or may be even lower as I said before I take fragmine injections when 3 or below

So not leaving it to chance already survived one major not worth chanceing another one

Ps good luck England 🏴󠁧󠁢󠁥󠁮󠁧󠁿 for to night 🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿🏴󠁧󠁢󠁥󠁮󠁧󠁿😊

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That's why I keep my inr at the top of my range at 4.5 and I'm quite relaxed if it goes above that as in reality allowing for the difference between vein and finger it's not high enough to worry about.

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Hi Tucson,

What INR do you have in the vein when the finger gives an INR of 4.5?

Kerstin

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it's been a while since I checked it and the difference was 0.5 with the vein higher

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That is unusual with the veinvalue higher. Usually the fingerprick-value is higher. I suggest you do it again a couple of times so you can feel safe. An INR of 4.5 is a high INR and I do not know how old you are.

If the INR is rather low one day the difference is less. With a high INR there is usually a great difference.

Best wishes from Kerstin in Stockholm

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I don't know what age has to do with anything but I'm 63 nearly 64 birthday next month, I was diagnosed at 58. My Inr is kept at 4.5 because I had a stroke at 4, so it may be high but it's necessary.I try to not let my Inr ever go low, anywhere near 3 is very low for me and a rare event. Tbh it's more likely to be at 5.2 than 3. It may be unusual for the vein to be higher but it is what it is. My Inr is generally stable, the specialist team consider it to be extremely stable as the changes are small and infrequent. I have none of the usual symptoms either so I'm an oddball my biggest issue is the disintegration of my joints, I currently need both knees replaced and 1 elbow but they are falling apart quicker than they are being fixed. Roll on October when I should have my first new knee and depending on how that goes the second will follow. No doubt by the time they are sorted my shoulders and other elbow will be joining the queue.

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Hi Tucson,

I ask you about your age as when we are over 65 or 70 (I am 74 today) the Hematologists are afraid to keep us at a high INR because of the bleeding risque. You say you are usually at an INR often of 5.2 (vein or fingerprick?) and then the vein-value you say is higher! How big is the difference to your vein-value ? and how often do you do doubletest to know.

Kerstin in Stockholm

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I’m 50

Just spoken to Roche in the uk 🇬🇧 they denied any problems with strips and said if I have antiphosolipid symdrome I should not be using the machine ! I told them I’m under the care of prof hunt at st Thomas and she said it was fine for me to use ??? I said that Roche needs to contact prof hunt and tell here not to advise people to use machine before some one has a major clotting avant she refused to call them said it wasn’t there problem 😐

I phoned prof hunt Secatary and explained the situation and she said prof wasn’t there and put me through to an answer machine to Carl the thromboid nurse who is away on holiday 😏 what a bloody joke

Some one is going to have a major clotting avent simple because of these test strips !!!!!

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Hi Tim!

We are all different with this illness....... I do not know if you are triplepositive or positive to Lupus Anticoagulant.

Those of us positive to Lupus Anticoagulant or triplepositive with high titres may have difficulties when selftesting. That is why we should have the opportunity to do it rather often at home and to do several doubletests to see how much the blood changes when tested in the vein at a well renomeé lab. Several tests should be done to see if the difference is bigger when the INR is HIGH one day. For me that is the case. When I have an INR of 5.0 in the finger the INR in the vein is perhaps 4.0 or even less .

It is important to know this of course if you selftest, as then you know when you are in range or not.

It is important to say that probably most of us with this illness have no difference or only 0.2, 0,3 or 0.4 in INR between the vein- and the fingerpricktest and that is very good. I have no paper saying how many APS-sufferes who have Lupus Anticoagulant in their blood.

What I say is, that it is important to do several doubletests to KNOW FACT. It is after all our own bodies.

I have changed test strips and they also give differences between the vein- and the finger-test but not so much as with batch 306 as I had the last time. I tell you this as Ray46 here has already talked about batches 298 or 299 should be ok.

When I heard this here on our site, my hospital in Sweden had already changed to another monitor, but why I do not know. I do not think it has anything with APS to do at all. People with Warfarin and without our illness use it. They suggested me to use it but still there is a difference but not so big as before, so I intend to keep it.

I hope England wins tomorrow!!

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