Sticky Blood-Hughes Syndrome Support
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Update and Raw Spinach Question ;D)

Hello everyone!

I am so happy to say that I finally found a hematologist near me that works with APS! He looked at my past 3 labs that were taken 3 months apart and said there's no question that I have APS. He is very knowledgeable, ready to work WITH me and I've started back on my Warfarin last Thursday.

Here is my spinach question. I realize that I need to be very consistent with my Vitamin K intake and I generally eat spinach most every day. I either eat it as part of a salad or I saute' it and eat with an egg in the morning. It's generally about a "cup". I keep seeing that a cup of RAW spinach is about 144.9 mcg, but then I've seen where ONE leaf is about 48.3 mcg per leaf. Are they saying that there are only about three leafs of spinach in a cup? That sounds a little off. I generally grab a handful of spinach when I put it in a salad or saute' it and that would be a lot more than 144.9 mcg.

I am using a vitamin K tracker and my goal is to get my small amounts of my usual vitamin K through blueberries, romain lettuce, carrots, celery, cashews etc then at the end of the day supplement spinach to keep my vitamin K at a specific level. I think it would be easier for me to manage that way. There's just a big difference in what I thought a "cup" of raw spinach is and what I keep seeing on-line.

Can some of you APS friend help me out and tell me how you manage your vitamin K in-take? I think it's still very good for me to eat vitamin K - rich foods and just stay consistent rather than cut them out completely.

Oh - by the way. I was on 5 mg warfarin x 4 nights and my INR only rose to 1.5. I guess after my PE I was on Heparin to begin with so that's another reason why it's taking longer to get to where we want it. They kept me on the 5 mg two more nights and I retest tomorrow.

Thanks in advance for your input!

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Hi as you have probably worked out, you need to have the same amount of greens per day, you need to have a look at Cath Atkins book, 'Eat on Warfarin'. A lot of people have found it really useful. I can't give you any personal feedback, as I have never had Warfarin, only other anticoagulants. MaryF

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Yes, that's what I'm trying to do since consistency is key, just wondering about the leaf/cup ratio. Thanks for the book idea Mary! :D)

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It depends if it is cooked or raw as when it is cooked it shrinks, as long as your consistent in the amount it shouldn’t be a problem.. so if you eat a cup cooked continue to eat it cooked if raw continue raw...hope this helps

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Yes, I understand about the cooked vs raw, but if I eat other things that have vitamin K in them that day (which I do a lot) then I won't want to eat as much spinach ... so I guess I'll just go with the 48.3 mcg per spinach leaf and get myself to where I need to be. I guess what I'm trying to say is that I don't want to always get my vitamin K from spinach and therefore would not want to eat the same amount of spinach each day if I'm getting it elsewhere.

I think I answered my own question - Ha ha! That spinach is brutal with vitamin k, but it's so good for you (except for our warfarin concern). I can see why some people would just steer clear of spinach because of the warfarin but I'm going to try and keep a very close eye on it and try to keep eating food that contains it.

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I have always been told to continue with my normal diet. If you have greens then have them every day and the same amount. Your INR will then get used to it and if it does not - takes a long time to reach its target then they may have to adjust your warfarin dose a little to help out.

Im not on warfarin now but heparin but thats what I was told to do.

Glad you have found a good Dr. Hang on to him!

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I guess my "normal" was eat spinach one day and then sometimes not for several days. So since I like it and it's so good for me I wanted to just try and incorporate the same amount of vitamin K as best I could each day. My problem is I love other fruits and vegetables that are good for me and have decent amount of vitamin K. I'll get used to it at some point.

YES! I am so excited to find this doc. He and his nurse are going to be wonderful!

Thanks APSnotFAB! :D))))

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When I went on the CC Functional Med diet I was asked to eat 4-6 green leafies a day. I spoke with both my hematologist and my GP and they were both very piositive about this new diet and they were interested to see how I responded. And they OKed extra INRs.

Well, my INR went down a tad, and my warfarin dose was raised from 7.5 to 9 mg daily. My GI issues just dissolved, a few pounds dropped off, and I felt fantastic, and many of my blood inflammatory markers dropped. So, for me, the increase in greens was a big positive to my diet. (And the hematologist attributed the need to raise my INR more to a healed gut absorbing more K then to my eating more of it.)

And BTW, I never had to be exact with my VItamin K mental calculations. No liver, but 1 serving of kale or spinach, 2 servings of broccolli, romain or cabbage, same amount of chamomile tea per day. Not very detailed (my then hematologist called it “voo doo blood chemistry”) but it worked for me. The important thing? Keep a log of Vitamin K foods and you will learn to see patterns.

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Hi Gina,

This makes a lot of sense to me. I feel better when I eat spinach, broccoli, romain, cabbage, blueberries etc. Anything dark is so good for us but of course they are the ones with the vitamin K. I think I'm on the right track and am keeping a pretty detailed log just in case!

Thanks!

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Aloha frim Hawaii!

Yes, a handful of spinach a fay keeps the doctor away!

The same size (or weight) raw, then you can cook, if desired. And the same other veggies with K per day.

Test your INR after a few days, adjust your warfarin dose to get the desired INR and voila! You're there!

I'm vegetarian, 7/8 mg warfarin, INR of 3-4.....

Good luck!

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I've realized that I must have cut back on my spinach the 6 months I was on warfarin after my PE because I could keep my INR between 2-3 with alternating 5mcg and 2.5 mcg. Now that I have APS diagnosis my doc and I decided to shoot for 2.5-3 INR to start with and see how I feel. Saying that, with all the Vitamin K I eat, I bet I'll have to be on a higher dose of Warfarin to get me there and keep me there! YES! Love my spinach!

Thank you!!! :d)))))

ps - Hawaii sounds delightful! I've been there 3 times but it's some time!

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Aloha. ..now you've got the idea! I'm not afraid to eat the consistent vit k veggies because I know my INR can be pushed up to 4 and I'm better off!

For protein, i go with the beautiful fish we have here in Hawaii and our maevelous sweet potatoes, rice and corn, etc yum!

BTW, a swim a day keeps the doctor away, too!

Aloha!

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The heraprin will not affect your warfarin INR at all. You can see a very slight effect in warfarin for up to five days but the biggest jump will be day three.

I will not be surprised if you need to raise your warfarin some.

For me, I love the convenience of spinach! It’s so versatile. I reach into the bag and pull out about the same hand full every day. If I’m on the go, i pack it in a ziplock bag. I order something it pairs with st a restaurant. ( put it in a burger for lettuce substitution and a salad on the side. )

Mexican food? Taco salad!

Or just ask chef to make a salad with it. ( show wait person your medical ID bracelet. By the way- in the states google Lauren’s Hope website for pretty bracelets! The tags interchange!-

I chose spinach because it has so much iron- we tend to get deficient. And lots of the other vitamins and minerals. It’s honestly the best well rounded green for us- so versatile and “ mobile!”

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Hi Kelly,

Do you eat the spinach raw? I thought we had to eat so much from it as it did not effect my INR much. Brusselsprourts I have found is the best to lower a too high INR but they have to be cooked.

I have found some "old glasses" from 1996 (not as strong as todays glasses) that will not make the difference between the eyes too big as that is what makes it difficult to read.

Kerstin

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Lure,

A cup of raw spinach is 144.9 mcg. But it would take A LOT of spinach to make a cup of cooked spinach which is about 888 mcg. That's where people get in trouble from what I hear. So I try to eat a handful a day that starts out raw. I can either wilt it down to hardly anything and eat it on an egg or eat it in a salad raw.

Part of my question above was how weird I thought it was that a "cup" of spinach is 144.9 mcg but a single leaf is 48.3 mcg. So I guess they are saying there are only 3 leafs in a cup per mcg standards? If I'm doing a handful of spinach a day I'm getting way more than 144.9 mcgs, but as long as I do that everyday I'll be fine.

It can definitely be confusing!

Thanks Lure!

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Thanks for that that good info!

I keep to my Broccoli and raw sallad that I eat every day. I will try some spinach again as it is very healthy.

Kerstin

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Kelly,

I guess I meant when I started my journey after my first PE they started me on Heparin to get my INR's up there a little more quickly. (I think that's what we did! My brain is nutty but am always glad I'm in good company here - ha). I haven't been on heparin since right when they started therapy after my PE in Dec. of 2016. I then was off of everything after May of 2017 and that's when my journey of getting this APS diagnosed began (after I was off of warfarin). So, now just started it back up a week ago. The funny thing is my INR went up really quickly the first time. That's why I thought it was that first boost of heparin before I bridged over to Warfarin. Oh boy --- who knows! HA!

I think we are on the same page! I'd like to use those spinach leaves as my go-to vitamin k/iron. It's so easy. I was flabbergasted when I read that one leaf had 48 mcgs (or whatever it was). Thankfully I love the taste either barely sauteed on an egg or just plain on what you described above. But I was doing the same thing, about a handful of spinach a day. Then I have other things as well like broccoli, romain, berries, prunes. So was thinking if I DIDN'T get those in I could just eat another leaf or two of spinach!

I'll probably find I am over thinking it, but do believe I should be as consistent as possible so I will know if it's my diet if/when my INRs go haywire!

Thanks Kelly!

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I do eat it raw. Approximately the same amount every day as my base line and stabilizer for vitamin k. If I’m too high with INR then I will add Brussels sprouts ( cooked of course- I keep in freezer for these occasions.)

If I’m too high low in INR I will back off the spinach.

Good thing you didn’t throw away your old glasses!

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Hey Kelly,

Look at my reply to Lure about the cup vs 3 leafs of spinach! I think I'll just stick with my handful (which is a lot of vitamin K) and use only extra leaves of spinach here and there if I don't get my other vitamin K in.

See what you think....

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