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Hughes Syndrome APS Forum

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Another possibly silly question.

donnabrain profile image
9 Replies

Hi.

So we all have at some point or other had our antibodies tested, and mine are negative, or rather they were the last time they were tested which I believe was three years ago.

Those on wayfarin have their INR tested.

But is there some sort of test, that literally tests how thick/ sticky your blood is, when you are not on wayfarin?

Not an antibodies test.

Just a test to tell how thick your blood is.

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donnabrain profile image
donnabrain
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9 Replies
Ozchick profile image
Ozchick

Are you on other meds for APS (not Warfarin)? You can get an APTT.

The APTT (activated partial thromboplastin time) is a measure of one part of the clotting system known as the intrinsic pathway. This pathway involves a number of coagulation factors, which are proteins involved in the normal clotting process. probably not a complete picture. Not sure if this is what you mean? Someone more knowledgeable on here may know.

donnabrain profile image
donnabrain in reply toOzchick

Thank you.

Thats probably exactly what I meant.

As my previous specialist won't see me, and my antibodies are negative, I wanted something I can request my gp to do

GinaD profile image
GinaD

I tested strongly positive on all 2of the 3diagnostic tests for APS back in 2001 after numerous migraines and TIAs. I have tested on and off negative/positive after I went gluten free in 2004. Then, after Cleveland Clinic identified a cashew allergy in 2016 and I eliminated cashews from my diet, all my APS tests have been consistently negative. So some hematologists say I no longer have APS and can stop warfarin. I have followed the advice of one hematologist who admitted that without clearly identifying my trigger/cause, that those nasty antibodies could return. So, he suggested I aim for the lowest INR with no symptoms-which for me is 1.7 to 2.25. Which seems to be working for me. ( I am fortunate that I have a "tell:" if I wake up and the back of my head is numb- ish, that means my blood is too thick. )

donnabrain profile image
donnabrain in reply toGinaD

Funny things food allergies.

I was told I had RA, but the lupus unit says I don't ( mind you they now say I don't have any of the things I previously had,) but whatever it was that caused my joints to be red and painful has all but gone since I stopped drinking milk.

GinaD profile image
GinaD in reply todonnabrain

Exactly! More research and documentation needs to be done on common food allergies, but since results wont be money makers for any companies (actually , food and pharma entities could lose money), this wont happen anytime soon.

donnabrain profile image
donnabrain in reply toGinaD

How did they realise you reacted to cashews?

And no other nuts?

I,m Currently putting cashew milk in my coffee having given up cow juice as my son and I call it

GinaD profile image
GinaD in reply todonnabrain

Functional Med at CC ran some very extensive blood tests. I was already on an elimination diet, whereby one eliminates many possible dietary culprits and then one reintroduces one at a time over many weeks. Cashews were not on the original diet, But after they got the blood results, Dr Kharbat Believed I was reacting to a "high histamine foods" either tomatoes, eggplant or cashews. Do those 3were added to the elimination plan. When it came time to reintroduce introduce tomatoes, I have my fingers crossed all week hoping I would not have a reaction. And I did not. Next came eggplant. Im a big fan of Baba Ganoosh. Nope. when it came time to re-introduce cashews, I was almost bored with the process. But on that first day I had stomach cramping issues. By the end of that first week it was clear I was allergic to cashews. I have not had any cashews sense I know longer test anywhere near possible for any of the three APS monikers.

KellyInTexas profile image
KellyInTexasAdministrator in reply todonnabrain

You may find oat milk to be the better bet.

Our daughter is having all the auto immune markers and found allergies along with it. She was tested by her gastroenterologist .

She is allergic to most nuts , and casein

donnabrain profile image
donnabrain in reply toKellyInTexas

Would oat milk not contain gluten?

I am gluten free.

Have been trying lots different milks, since I went off cows.

First was almond was ok, but curdled, then rice, nice, but sweet ,then hazelnut, liked that a lot but not always available.

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