D Dim on Warfarin

[Greenmil3]

Feeling very annoyed spent 5 hours in A&E last night as my left calf is larger than my right saw the triage sister she didn’t know what I had! No surprise there! Then waited to see the Doc who examined me and said needed blood work waited 2 hours for that then another 2 for results. Doc says your DDim was fine. So I left it was only as someone on a Facebook APS group noticed my late night / early morning rant who has just told me a ddim test on Warfarin is not accurate so I guess I have to (and why am I surprised) go back and educate the staff but I am it going on a Friday night! But then again been told to stop my warfarin as of last night as I have a LP at Guys on Wednesday but the SHO at Guys who I am in contact with and who I was relying on is not back till Monday!

Any Suggestions?

[HollyHeski Administrator]

I had something similar and local A & E like you said my d dimmer was ok (I'm on clexane, so upped my dose anyway). They refused to scan?!!

6 weeks later I was told by my specialist, everyone has their own d dimmer, it should not be relied on for us, especially triple positive patients.

St Thomas's and Guys have a thrombosis specialist on over the weekend, ring or send an email and ask for advice?

[Greenmil3 in reply to HollyHeski]

Holly thanks for that will look up their number

[KellyInTexas Administrator in reply to Greenmil3]

Very good, Holly!

I wondered the other day if you weren’t perhaps starting to form a clot.

I hope you are getting the help you need.

[HollyHeski Administrator in reply to Greenmil3]

Hi, will be home later, I gave the number and email for St Thomas team but not the Guys team. PM me if you need them.

[Greenmil3 in reply to HollyHeski]

Holly that would be great thanks

[HollyHeski Administrator in reply to Greenmil3]

👍

[KellyInTexas Administrator]

I’ve had DVT’s ( positive by Doppler scan) and had d dimers under 200. ( 200 is the magic generic number any A A&E doctor will be looking for. )

In other words, a positive result for a DVT, and negative for D dimer.

All the while on warfarin.

Also, there are published papers suggesting that fibrin ( that the d dimer reflects) does not break resolve ( break down) correctly, or at least in the same way with APS patients as it does in non APS patients.

This has been shown to skew the d dimer results to lower results in lights of a concurrent positive result for DVT.

Fibrin is a substance within a spider web like net work within a clot that forms to hold a clot together. As your body resolves the clot, the D- dimer count usually diminishes.

It does take a while. ( I know as the clot forms and resolves, it goes through various stages of viscosity, and d dimers reflect this as well. They go foamy, gelatinous...

The point is... it not nearly as simple as your A&E is making it out to be. Only a hematologist can really explain this to you.

I’m doing my best to explain it as mine did to me, but he had his computer in front of him and was pulling up images.

Can you google Fibrolysis?

Also google:

1. Resolution of a blood clot

2. D dimers, accuracy in APS

3. Fibrin in Blood clot

I would do the same search to find articles to post here... so you try and see what you find.

[Greenmil3 in reply to KellyInTexas]

As usual Kelly you are immense

[KellyInTexas Administrator in reply to Greenmil3]

Well, I like so many here, have had a very rigorous and unfortunate curriculum forced upon me that I never signed up for!

An unwitting student of hematology. Boot camp 101.

[MaryF Administrator]

I would definitely be following the advice given by HollyHeski and getting hold of the specialist on call for this over the week-end at St Thomas'. You can't be left in this state So many people appear to have this sort of thing happening to them, it is stressful to have to make calls but I would do this if it were me. MaryF

[Greenmil3 in reply to MaryF]

Thanks mary I am going to call them rather than go to my local A&E who are uneducated

[judes]

I have made it my life’s mission to educate medical staff on the inaccuracy of D-Dimer tests on APS patients, it drives me insane.

I had a clinical matron who said D-Dimer was negative, your on warfarin you can’t have a DVT. I insisted that I had a scan she huffed and puffed for a while, then sent me to ultrasound.

I knew the chap who was doing the scan who said he’d find it. Find it he did from ankle to knee. The look I got was not nice!

So, be insistent sometimes it’s hard work and I still find it awful that many docs are not aware.

Tho to be fair I came across a doc recently who said to me that in many blood tests in APS patients don’t actually mean a lot and other things like scans and xrays always need to be done.

There is hope!

J

[Greenmil3 in reply to judes]

Thanks judes I am going to follow Texas advice and call Guys tomorrow

[KellyInTexas Administrator in reply to judes]

Thank you all this confirmation, Judes.

I’ve had a doctor tell me the same, and it was a nurse who intervened, after listening to me, and persuaded him to scan me. Voila- a DVT.

Seems we have had similar struggles.

I’ll see if I can find this paper.

[Jumper99]

d-dimer tests are not accurate for APS patients whether on warfarin or not. It’s because it’s a clotting disease which apparently can interfere with the test results.