PBJ and homemade navy bean soup are mine, what are yours?

[Wittycjt]

When I am trying to keep my vit k values low my go tos' are peanut butter and jam/preserves sandwiches, homemade navy bean soup with ham, skim milk and nonfat yogurt. What do others go to? I also enjoy ambrosia salad (more of a dessert)!

[Lure2]

Then you have a low INR you mean as you want to avoid too much K-vit?

If I have a too low INR I avoid too much greens like broccoli (eat that every day so I reduce that amount) etc. If it is too low I take a Fragminshot or try to raise my tablet-intake with 1/4 - 1/2 of a tablet. Normal dose, 2 tablets = 5 mg. Does not matter how much Warfarin we need as that is indivudual from person to person. The INR is the same for everyone and that is exstremely important to keep in range and also stable.

But not change ALL three (Fragmin, higher Warfarin, less green veg rich in vit K) the same day that depends of course on how low the INR is. The Fragminshot I can take everytime when INR is too low and also reduce my greens but perhaps not also raise my tablet with 1/4 of a tablet or even 1/2 a tablet. I take 5 mg ( 2 tablets) of Warfarin each day and very seldom change the intake.

I am triple-positive with high titres and primary APS. We are all different and react different so we must take it slowly and make a LOT OF NOTES to learn. I selftest every second day and decide about my intake and can talk to my coagulation clinic if I need assistance.

CONSTANCY in what we eat is the key and know that it takes 2 - 3 days for the Warfarin to react on our changes. I can lower my INR with more brusselsprouts within 15 hours, but that is me.

I doubletest every 3 months at the hospital-lab and there is a difference between vein-test INR and INR in the finger-test with the CoaguChek-machine. My veintest INR is 0,8 lower (and even more if I have a very high INR that special day) but the difference is almost THE SAME every time and that is what is important to be able to selftest.

I am Lupus Anticoagulant (one of the three antibodies they test for a diagnose of APS ) and that can make it difficult to selftest as the INR goes up and down a lot. In one day it can change from 5.0 - 4.0 if I eat a little more greens.

So when i want to keep my K-vit low i avoid to eat so much broccoli. I live alone after my divorce so it is easy to stick to the same diet most of the time. My plate consists of several colours and I love that food and also a glass of redwine for dinner. On a restaurant I eat other food of course or with friends but always the greens also. I am 72 and do not work so I can decide myself about my life and how I want to live with my APS.

That became a long one!

Kerstin in Stockholm

[Ray46]

For me, INR too low = more alcohol (not a lot, extra small glass of wine maybe), INR too high = lots of broccoli or spinach pie/pasta. Works faster and easier than changing dose.

Otherwise I eat varied diet without worrying about it much - I do know the other high K foods like spinach and avoid those unless I have INR to burn, and also avoid cranberries, grapefruit and all the supplements listed as interacting with Warfarin.

[MaryF Administrator]

Hi, Cath Atkin who has Hughes Syndrome has written a very useful book, called Eat on Warfarin which you my find interesting. MaryF

[Wittycjt]

I am also triple positive. I try to eat 20-25mcg of vit k per day. I am on12.5 mg of warfarin daily. I self test on Mon & Thurs and do vein comparisons every 2 months: My INRs are usually a 0.8- 1 mcg difference. So I am not looking to add necessarily as there isn't much wiggle room and I don't have a shot ordered by my doc ?

[Lure2]

Hi,

Do you eat 20-25 mcg (?) of K-vit in tablets? Is there a difference of 0,8 - 1 in INR between fingerprick and vein-values and is the fingerprick higher than the vein-value or viceversa?

Kerstin

[Wittycjt]

I eat 20-25 I take a daily multivit without vit k as my dr doesn't want me to have the vit in it. My venous stick is higher than my finger prick why do u ask?

[Lure2 in reply to Wittycjt]

Hi, I ask because this is the way we learn how to live with our illness. To listen to others in the "same boat". Also I am very interested in this illness how to make it as easy as possible to live with and also to stay well as long as possible. I should have wanted to be a Doctor but instead I became a Secretary . Afterall knowledge is power I think.

My fingerprick with the CoaguChek XS is higher (around 0,8 INR) than the INR in the vein taken a couple of hours afterwards the same day. Always higher and almost the same difference which is importartant. I am very sensitive as I am triple-positive. You have a HIGHER INR with the VEIN-test!

I also wonder why you eat K-vit tablets? Then you can not eat the greens also or? I have not read the book from Cath Atkin.

Kerstin

[Lure2 in reply to Wittycjt]

So you eat vitamins K in greens but not in tablets as your doctor does not want you to do that. I wonder how you manage to eat exactly 20-25 mcg of K-vit (is that g mg?) in greens?

Kerstin

[Wittycjt]

How did you get them to give you a fragmen shot?

[Lure2]

My therapeutic level is now raised to an INR between 3.5 - 4

As I selftest I now know I feel best at 4.0. As I have all the three antibodies positive in high titres my Hematologist does not want me to get any more clots when my INR goes under 3.0 - 3.5. I now know I have got symptoms on an INR of 3.2 and 3.4 (vein-test) actually several times when I look back on journals and notes etc.

Ask your Specialist for a Fragminshot when you go too low or your symptoms come back at home. What therapeutic level do you have?

Kerstin

[Jamaica1951 in reply to Lure2]

Would you please tell me what your symptoms are when your INR is low at 3.0. I am now on 5mg daily except for 2,5 mg on Thursdays with a target of 2.5-3.0 INR. I may need to speak to my Hematologist to adjust the dosage. Every 4-5 months I feel ill and pressure soars for no apparent reason. I stay in the ER for hours until pressure is normal and the go home. Thanks for all the helpful info. This is so new and scary for me.

[Lure2 in reply to Jamaica1951]

I sent you a private message the other day but you did not answer. I thought today that perhaps you did not know how to answer.

Therefor I ask you again: Do you have APS (Hughes Syndrome or Sticky Blood syndrome) or beliewe you have it ?

If so, please put your own question here on our site and you will get good answers from our members.

Best wishes from Kerstin in Stockholm

[Jamaica1951 in reply to Lure2]

Thanks Kerstin and sorry for the delay. Yes, I was diagnosed with Sticky Blood by my hematologist in August 2016. Two sets of tests were the same. Trying to schedule another appointment soon instead of the one for a month from now. I'll stay posted more closely. Thanks again.

Linda

[Wittycjt in reply to Lure2]

My thing is I don't have symptoms fortunately. I keep my greens total by eating and measuring only canned veggies... green beans, carrots, baked beans, baked potatoes. I use fat free Italian drsg a lot for flavoring, no mayonnaise unless I make it home-made with corn oil and egg. And chicken, meats, I pretty much eat plain.. not too savory I assure you that's why I was looking for what others were looking to. My INR is to be kept between 2-3 per my physicians including the specialist I saw in NY last September. See what I mean...very little wiggle room. When I was comparing my machine to lab test they were done at the same time and same arm: rt arm for vein, rt fingers for fingerprick. I had purchased the values charts from Dr Gourmet online at "Drgourmet.com" a while ago they are stated in mcg (micrograms).

[Wittycjt]

Funny... my INR today was 2 so doc increased my warfarin by 2.5 for today and tomorrow.......

[Lure2 in reply to Wittycjt]

Hi, So your Specialist does not believe you when you told him what prof Hughes said to you in person that we need an INR between 3.5 - 4.0 when having APS.

Even if you have no symptoms you have got 2 strokes and open heart surgery the last year you have told us. An INR of 2.0 is too low. What would that be in the vein? You say the vein-stick i higher then you are UNDER an INR of 2.0 ......or?

Kerstin

[Wittycjt]

I emailed him the video after my last appt and I haven't got another appt for a couple of months. I'm thinking if 2 by stick it is 1. 2 in the vein?Good point. I will talk to him at my next appt, since I haven't symptoms and feel ok. Should symptoms develop I will call him immediately. Before the initial stroke I had terrible headache and second stroke cardiac surgeon hadn't had me on warfarin. Guess now I am in a quandry?

[Lure2 in reply to Wittycjt]

Please do not wait for symptoms!

You should be on quite a higher INR. If it is correct you are on an INR of 1.2 , then you are not anticoagulated at all. That is what we have before we start Warfarin.

Please take care and do not eat a lot of K-vit the next days. I am not a Doctor but please talk to someone about your low INR!!

Kerstin

[Wittycjt]

I just showed my husband all of these messages. He tells me my INR difference is 0.2, not 0.8. I was mistaken.So when my INR is 2 with the coag check the blood stick would be 1.8. Sorry for the confusion. My husband thinks I am at my best between 2.8 + 3.4. Your thoughts?

[Lure2]

What do you say yourself? if it is 0,2 lower than the CoaguChek-machine that sounds quite ok and normal. 3 days ago you said that your vein-values were higher than the fingerprick-value. I guess you do not have Lupus Anticoagulant.

Please make your own notes of everything. Do several doubletests with the hospital so the difference is always around 0,2. That is what is important. Have they not asked you to do that?

Do you not notice yourself when you are at your best? As prof Hughes told us: we should be over an INR of 3.5 and most of us feel best around 4.0 with neurological symptoms. Your husband has probably not seen you so well the last years.

Kerstin

[Wittycjt]

As in my previous messages I have done several test comparisons with the lab. I think this confusion is what my husband is speaking of and he says my stuttering increases also. This confusion is something he is more aware of than me...as I think I'm fine. I am going to speak to the doctor. Thank you for your patience with me at this time. I realize it seems I am being difficult but this is truly not my intent. Have a nice Sunday! Apologies again, Cindy

[Lure2 in reply to Wittycjt]

No, you are not difficult. It is my fault if you feel that way. It can be difficult with another language how we express what we want to say. That is the trouble with me. I must watch better on how I express myself probably.

We learn also that our relatives notice that we are not like earlier even if we do not notice it ourselves. I can see on your way of writing that you feel much better now than earlier. I just want to help you.

Kerstin