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Hughes Syndrome APS Forum

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Joecel profile image
16 Replies

I've been reading on what to eat best for me to feel better but almost every food seems to have Vik. K, any advice?

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Joecel profile image
Joecel
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16 Replies
Mermaidatheart profile image
Mermaidatheart

I found a free app/website that is very handy:

inrtracker.com

I am able to input any food/drink and the website shows how much K is in any given food/beveridge.

Works for me especially if I am dining out and unsure what K something may contain.

lupus-support1 profile image
lupus-support1Administrator

Ask your doctor to refer you to see a nutritionist. They will help you based on your medical needs.

With good wishes,

Ros

HollyHeski profile image
HollyHeskiAdministrator

Hi, you can eat vitamin k produce, as long as you have consistency.

Your local clinic usually have diet booklets advising diet while on warfarin.

You can also ask your GP to refer you to a dietician for detailed advice.

google.com/url?sa=t&source=...

Bobbydoodle profile image
Bobbydoodle

Hi

When I was first diagnosed with APS and put on warfarin I was avoiding foods with vitamin K but then I was also diagnosed with Lupus SLE and realised that diet was important so I went back to the warfarin clinic and told them I was changing my diet to include much more greens etc and they said they would monitor/test me more frequently while I was changing so that my warfarin could be adjusted to my diet rather than the other way round.

So I’m in the process now and so far so good.

Speak to your clinic and tell them what you want to do with your diet and they should help you.

Fra22-57 profile image
Fra22-57

I was referred to haematologist who just said refer to internet and eat less greens.Not helpful at all.I eat what I want but make sure I dont eat a lot of greens every day just maybe every other day.if INR high I have some kale to bring it down. Mermaidatheart had good answer for me too thou

MaryF profile image
MaryFAdministrator

Hi, it is very important that you have your doctor or specialist's input into any diet or dietary changes, if they can't help, they must refer you to a nutritionist who can help with this, so it can be managed to you. Some use Apps, but even those must be checked, I know one site called Eat on Warfarin, and the person who runs the site and wrote the book, does have Hughes Syndrome/APS themselves, even then I would be taking the website or book along to the GP, if you do investigate this. MaryF

MaryF profile image
MaryFAdministrator

Also, quite a write up on here including Vit K and Warfarin: versusarthritis.org/about-a... MaryF

GinaD profile image
GinaD

This is definitely a very personalized question. We all have such varying responses to varying medications, other medical issues -- such as arthritis, thinning bones or other blood disorders, and more! So, do consult with your specialist and a nutritionist. Back in the day (2000 when I was first diagnosed) hematologists regularly told patients to avoid all vitamin K foods. Now most hematologists offer different advice, such as "adjust the warfarin to meet your dietary needs, not the other way round." But again, what works for one may not work for another.

But the one issue you can tackle yourself -- learn which foods have how much Vitamin K (including leafy greens and liver) and which foods will accent the blood thinning of warfarin such as ginger and cranberries. One tidbit which helps: green is the color of vitamin K foods. Broccoli has a high K content, but cauliflower? No. Green cabbage -- high K. Red cabbage -- not very much. And liver has a lot of Viamin K. I think it is so ironically sad that someone who actually likes the taste of liver (me) can't eat it (too much K!). When I was bridging off warfarin for my surgeries I enjoyed savory dinners of liver and onions!. Yeah!

Stereolover profile image
Stereolover in reply to GinaD

This is new to me. When I was good I took vitD3 every day and was told vitK should be taken alongside it?

My list of questions for the rheumy is growing!

GinaD profile image
GinaD in reply to Stereolover

Vitamin D3is very important. But it does thin blood. If you make your D in your skin by sun exposure, then that D is stored in the skin until needed and then released into the blood stream from which it is absorbed by the cells that need it. So self made D does not have as great an effect on INR ( though for me it did have a slight effect.) Oral D goes directly into the blood. Since most of us dont get much sun exposure, this is why making sure you have Vitamin D is so important. Back when my APS was more active then now I went to a tanning bed twice a week (D can remain stored in skin for 48-72 hours.) I had several run-ins with that manager. She could not understand why I left after only a few minutes. I tried to explain to her that all I wanted was Vitamin D, and not a possible melanoma causing tan. but I could never get her to understand. Now i take oral D3 and it no longer whacks my INR out of control. AND I dont have to try to explain things to that annoying tanning bed manager. If you try a tanning bed I can tell you that, if my memory idps correct, a mere 7 minutes full body exposure was all I needed. But it did take up a lot of time with coming, going, changing clothes, wiping doen the bed before and after.

Stereolover profile image
Stereolover in reply to GinaD

Thanks so much. I wouldn’t use a tanning bed but I’m more than happy to take D3 tablets. I used to take a huge amount but haven’t taken any vitamins for around 18 months now. Ideally I’d like to take Turmeric but I know that’s a blood thinner.

Agent-J profile image
Agent-J

Agree with one of the other posters about INRTracker.com. I have eliminated most vitamin K from my diet as it is what works for me and my situation. INR Tracker was great for figuring out how much I could eat of most foods to drop my vitamin k intake.

Additionally, for the first 4 or 5 months on coumadin, I would also run a quick search on most food "X Food and coumadin". There is minimal vitamin K in cranberry juice but it reacts with coumadin so it is not recommended, as are a lot of surprising foods.

Also as many have noted above, consistency is key so if you do have that one high K item or food like cranberry juice, make sure you are consistent with it.

I found the dietitian I saw knew less than I did.

Good luck and remember to run everything by the coumadin clinic or your doc.

Jumper99 profile image
Jumper99 in reply to Agent-J

Cranberry juice acts the other way on your INR. It increases your INR and make you more likely to bleed. But I think it takes quite a lot to do that.

Tucson profile image
Tucson

I was always told to carry on eating my usual diet and warfarin would be adjusted around me. In fact my Inr has always been pretty stable and very little adjustment was ever needed.

Jumper99 profile image
Jumper99

As well as the good info on veggies here I have also found that probiotics and bio yoghurts can also decrease your INR. The theory is that we do make some vitamin K in our bodies even though we eat most of it. It is produced by bacteria in our intestines, probiotics increase the level of bacteria and so our bodies produce more vitamin k.

daisyd profile image
daisyd

I don’t know if anyone else has put this as I haven’t had time to read all the comments but there

is a good list of vit k foods

Welllife vitamin k registry

Don’t know if you have to put Alere tm home monitoring on your search

as well, but it should help you decide the same amount of vit k

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