Sticky Blood-Hughes Syndrome Support
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Coagucheck self test strips

Roche have told be email not to use there machine if I have antiphosolipid symdrome they denied that there is any problems with batches of test strips and seem to just be burry there head in the sand in this hole fiasco concerning batches of total inaccurate test strips results !

Had here rumours on social media about problems with test strips so when I saw prof hunt at st Thomas hospital Tuesday asked if I could have a Venus blood test and a comparison test with my machine .

Went to guys hospital yesterday to run tests

Venus 4.1 my test strips 5.1 !!!

On my way home picked up new batch of test strips from my pharmacy went straight home tested new batch no.311 same result 5.1 tested another strip 5.2

Obviously with batch is bad to

Going to pharmacy this morning to pick up New coagucheck strips hopefully this batch will be ok

Nothing wrong with my machine as put coagucheck strips guys hospital where using in my machine and results where the same as there hand held machine !

So it can only be test strips that are faulty

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This is all so worrying and frustrating for those that have been incouraged to use the strips. What a cop out by Roche, I am not on warfarin but I do remember Prof Hunt years ago promoting home testing. I presume she is aware of all these problems?

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Spoke to prof hunt Secatary yesterday who seemed uninterested said prof could not be contacted and put me through to an answer machine of one of the thrombosis nurses who is away on holiday untill the 30 July !!!!

Was at st Thomas on Tuesday told prof that there seemed to be a problem with test strips she told me she was unaware of any problems

Bit werd as I had briefly spoken to a consultant who said that there had been problems and some only found out after having a clotting avent!!! 😐

Seems every one burry there head in the sand about this major flaw in a bad batch of test strips 😡

Terrible!!

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Seems to me there are some invested interests that don’t want to be upset. As usual the blurred lines between healthcare and pharmacuticals is questioned and when things go wrong the pass the buck sceniro starts, everyone runs for cover and the patient who is piggy in the middle suffers.

If there are problems with the test strips I believe the appropriate body to report it to is the MHRA. I also urge everyone to send in yellow card warnings as this is the only way that medications or medical devices can be investigated properly and warnings issued. If there are widespread problems, this will be the quickest way to make sure the public is alerted.

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How do you send yellow card warnings?

Hi Tim, Lynn has put that link under the other post on here about the test strips, pinch that! MaryF

not sure that a bunch of yellow cards from APS patients is helpful - Roche has always said it can misread with APS and effectively that we use at our risk. Many NHS clinics have a massive investment in coaguchek and thousands and thousands patients who don't have APS, and if the information I have (and have posted about in the previous threads) is correct the issue is showing up there. The data from those thousands of patients and the commercial pressure from NHS will be far more persuasive and has already been brought to bear judging from my phone call with Roche. Things at going to happen, only question is what and when. Meantime it's venous every time.

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Ah but we may not be just a bunch of APS patients, just that we are the first ones to shine a light on a much bigger problem due to our more sensitive issues. If this is a big problem with faulty strips, then it’s going to have huge implications of all sorts of patients using their machines and could potentially be putting lives at risk.

So I repeat, people should use yellow cards, because only when patients report these issues do the warning ripples start to spread. If we all say it’s not worth it then if there is a problem, the company will sit on it until they can fix it without the financial burden of a full recall. That’s exactly what the yellow card system is for.

yellowcard.mhra.gov.uk/

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311 is the batch I am currently using - and the readings are all over the place. Either that or my inr has suddenly become way more unstable.

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Same batch that’s faulty for me 😐

Same batch for me three x

I'm a little foggy on this series of messages. I am tested in clinic every 2-4 weeks on a test strip. They prick my finger and grab a tiny bit of blood on a test strip and then inset into a machine. In 60-90 seconds the small machine beeps and displays a number. I don't know the brand name of the tester. Is this the same system in question?

Yes it is the same system

But I would think every day the run a comparison test against the strips and a Venus blood test to make test strips are ok 👍 I think it’s a bad batch of strips running from around 290 to 311 but not definitely sure at the moment

If your going to hospital for blood test I’m sure the results will be very reliable

I don't think clinics do run a comparison check going by the conversation I had with my clinic the other day. Firstly they are unaware of any issue with readings. I forwarded the letter Yellek sent me on to them to read. As a result we will compare tests in clinic, my machine, their machine, my strips, their strips and vein so everything covered. I just have to turn up with my machine and strips. I personally have had no problems with strips including the numbers others are complaining about. So hardly conclusive the strips are to blame, but we'll see.

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What batch numbers have you been using then ?

How do you know your strips are ok have you had a full comparison test at the hospital with your machine ?

A lot of people are having trouble so if your not that’s great but I don’t think it helping suggesting that there is a problem with all due respect

> I don't think clinics do run a comparison check

They should do for APS patients. Some do for other patients too, that is how this issue was found according to my info (I am not aware what triggered the checks, whether it was routine monitoring or whether it was clotting events, in a patient population of several thousand it could easily be the latter).

> Firstly they are unaware of any issue with readings

That makes sense if they don't do any comparison checks...

> As a result we will compare tests in clinic, my machine, their machine, my strips, their

> strips and vein so everything covered.

This is what I had to do to start self-testing and what is done again at every review.

Yes most of us do that when starting self testing but we're doing it again because of the recent issues raised. My reference to comparison tests that you've quoted part of was in response to a person saying " But I would think every day the run a comparison test against the strips and a Venus blood test to make test strips are ok"

I had a period of clinic double tests (venous and finger) over several months before I was considered for self-test (or for fingerprick in clinic) and then a three-way check, venous, clinic finger test and my finger test done in clinic (under observation) - checks your machine and your technique. That three-way cross check is repeated at every review (every few months). If there is any discrepancy can (and have) further cross check by using clinic strips in my machine and visa versa.

As to whether they do general comparison test checks for all (not-just-APS), I think they do and that's how they found this. Every day? - could be, one random patient per-day across several thousand total (in my area) is a level that you'd have very little chance of ever seeing/noticing it, quite possibly a lot of clinic staff could even be unaware of it. Actually I think it may have been a higher rate than that, because that would only give 100 or so samples (it is < 6 months worth given timescales that we know) to see a pattern in and I don't think that is enough because not every batch is faulty and not every test strip in the faulty batches (my 311s are giving me anything from zero to 0.6 difference, in same week).

I posted last week in the thread about 309. I have to say I wouldn't consider it a problem because of a difference of .1 on the two strips.

You say the difference between vein and strip was 1.0 with the vein being lower but you don't say what your difference normally is.

My problem been with 311 didn’t say I had a problem with 309

If your not having a problem that’s great for you other people are !

I went to guys hospital Friday Venus 4.1

My test strips 5.1

Guys hospital test strips 4.3

My machine with guys test strip and chip 4.3

So my strips are over reading massively ! Could be telling my blood inr is in my Range when really I should be injecting with fragmine 💉 all ready suffered a major stroke and made a miraculous recovery don’t want to have another one thank you

***** Edited by Admin*****

I can't see a discrepancy of .1 is much of an issue or would lead you to believe the batch of strips is dodgy but each to their own. How do you conclude your strips are massively over reading. You give a difference of .2 maximum?

Nor have you said what your normal vein reading would be.

We all have a difference between vein and fingerprick but you arn't saying what your difference normally is.

I've had multiple strokes.

***** Edited by Admin*****.

Venus 4.1 my self test strip 5.1

A hole point out not .1 or .2 out

If I self tested my strips would say 3.9 for example nearly bang on my target of 4 but really it would be 2.9 should be injecting fragmin

A hole 1 point out not .1

*****Edited by Admin*****

what is your usual comparison difference?

We all have a difference between vein and finger prick.

You must know this if you self test.

How do you know when to inject if you don't know the real reading?

In your conversion you are comparing apples with oranges try apples with apples.

Guys own goagucheck machine gave a reading of 4.3 against the Venus 4.1 so that would be acceptable reading only .2 difference

How ever my coagucheck test strips reading was 5.1 a hole one point out there for my batch of strips are faulty and I can not use this batch of strips

If I get a new batch and there is only a .2 difference as with guys hostiptal strips that would be acceptable for me to self test

******Edited by Admin******

That's not how comparison checks work.

You need to know your Inr from vein taken over a period of months.

At the same time comparing to your finger prick tests over the same months.

You need the same discrepancy or near enough each time.

Have you done that?

If not then you don't know what the difference is.

You can't assume anything from 1 test.

I understand about getting the new strips but that does not give you your comparison figure.

Only side by side testing over a period of months can do that.

My eyesight is fine thank you. Just take a breath and read what I'm writing.

You need to know your normal difference between finger prick and vein.

Did you carry out comparison tests when you started self testing?

Did the comparison test etc when I first got machine years ago I have have no unusual anti body’s that can some times interfere with test strips giving a faulse high reading

Prof hunt has told me I can use machine

It’s is my test strip batch that is faulty showing a reading of 5.1 against hospital finger prick machine 4.3 ok the problem is with my bad batch of strips nurse throw them in bin !!!!!

When I used hospital test strips in my machine test result was 4.3 exactly the same as the coagucheck check machine

****** Admin has removed offensive language******

No I said the difference was a hole one not .1

Venus was 4.1

Hospital machine 4.3

My machine 5.1

A hole one difference 4.1 to 5.1

Is a hole one point out

Which is totally understandable difference

*****Edited by Admin*****

If you actually read my reply you responded to you would know I'm planning on doing exactly that next week. I don't see a reason to panic just because someone else has an issue so yes it's perfectly valid to say I haven't had a problem. Plus I currently have 3 packs of strips here so can do my own comparison readings between strips. Why do people say "With all due respect" when being rude?

Venus 4.1 my test strips 5.1 !!!

That was yesterday, what is it usually?

A reminder to everybody on this thread to calm down and treat each other with respect, it is very hot and we all probably hot and bothered, no name calling or abusive comments please. MaryF

And this thread is now closed.

MaryF

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Tim, did you by any chance notice what batch/code number the "good" test strips were at Guys, were they <300 (older ones) or newer than 311?

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******NOTE FROM ADMIN******

We have had to remove some offensive and argumentative language from a number of posts on this thread. This subject is always contentious and has lead to threads being closed on this Forum in the past.

Unless members are posting with genuine information, rather than giving opinions, comments or posts on this subject will in future be deleted.

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