My warfarin challenge, please help! - Hughes Syndrome A...

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My warfarin challenge, please help!

Wittycjt profile image
12 Replies

My dilemma is I since being on warfarin/ Coumadin I have been monitoring the vit k content of each morsel of food I put in my mouth. I suffer from OCD. My Dr had told me to watch all green vegetables and anything containing vit k. I now realize this was a mistake for I took it to the extreme. I would have been much more successful had he just told me to not eat the green leafy veggies that are high: kale, spinach, lettuce then I would have eaten as I normally would have minus these foods that are very high. I was adjusting my vit k to cover the Coumadin. I should have eaten normally and let him adjust the Coumadin, instead I did it backwards. The problem is that I do not have a routine of what I eat so I am afraid to revert back to my "normal" pattern of eating prior to my having a stroke because I am afraid that if I eat the things I like routinely at this point in time I may possibly throw a clot and have another stroke. How can I do this safely, any thoughts/ suggestions would be appreciated. I self check my INR once a week per my Drs direction. I know you are not medical authorities but thoughts would be appreciated as how to manage returning to my, so called "normal" as I have lost over twenty pounds and do not want to lose any more. Thank you😬

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Wittycjt
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12 Replies

Hi,

I did the same out of fear and would like to know what people say. I've slowly introduced greens again (not leafy) around my INR checking date so if it's affected it, I'll know sooner rather than later. This is my first week of trying it so I'll let you know.

Good luck!

Wittycjt profile image
Wittycjt in reply to

Then you understand my dilemma. TY( thank you)

Wittycjt profile image
Wittycjt in reply to

So? How are you doing with your diet/INRS?

MaryF profile image
MaryFAdministrator

The best thing you could do as a half way measure would be to get the new book by Cath Atkin - East on Warfarin, I heard her speak at Patient's Day in May and have followed her progress, from a patient's perspective, she has worked out the finer detail. Best of luck. MaryF

Wittycjt profile image
Wittycjt in reply toMaryF

What is the book's name please, thank you

Lure2 profile image
Lure2

Also make notes about tablets, INR, K-vit vegetables, new drugs, exercise, wine etc etc. That makes life easier for you and you learn how to live with your anticoagulation.

The green veg like broccoli and brusselsprouts can lower your INR (for me it takes around 15 hours). It takes 2 - 3 days to get the INR up with the tablet.

Best wishes from Kerstin in Stockholm

Wittycjt profile image
Wittycjt

Thank you all, good information 👍🏻

Wittycjt profile image
Wittycjt

Thank you

GinaD profile image
GinaD

i was placed on warfarin in from 1988-1992 for DvTs which were then attributed to my sky high platelet count. The doctor I had then ascribed to a theory ( I have no idea if it is valid!) that varying the warfarin doseage and K content in food, actually results in a more stable INR. i followed his recommendations varying my warfarin doseage over 2 or 3 days and paying absoltely no attention to Vitamin K -- and amazingly, his therapy worked! My INR remained stable.

when i was placed back on warfarin in 2001 at which time my diagnosis was changed to Hughes Syndrome I eventually moved to the consistent doseage regimen ( i was under the care of a more traditional hematologist.) But I still eat K containing foods. I have kind of memorized the relative K contents of veggies and will eat roughly the same amount daily. And for me this has worked. I do refrain from eating the super high K foods such as liver and organ meats. But my diet is healthy and works for me.

We're all different -especially in how quickly we metabolize foods! Do keep INR and rough diet charts for some months and you will probably spot some relationships between this or that food or activity and a rise or drop in INR.

and remember! There are other treatments out there which are not effected by diet! If you continue to fret about this, do speak with your doc.

Lure2 profile image
Lure2

Hi again,

I agree with Gina. There are actually other possibilities of anticoagulation besides Warfarin. If this could make your life easier.

Kerstin

Wittycjt profile image
Wittycjt

I was trying to persuade my doc to switch me to lovenox, I thought he was going to but he decided it was not beneficial due to possible liver or kidney damage? Anyone taking one of the other newer oral anti coags? Or hear anything about studies of such being beneficial for Hughe's/APS?

Wittycjt profile image
Wittycjt

It's been a year for me, interesting to look at this now.

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