INR level getting high: I feel that I... - Hughes Syndrome A...

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INR level getting high

stillwaiting profile image
9 Replies

I feel that I must be a bit thick but learning about and managing warfarin seems so complicated. My INR nurse admits APS is new to her. I am just so so glad I can come here and look stuff up in the INR & warfarin tags.

My INR has gone from 2.1 to 4.9 in a week. My target is 3. I can be so clever with hindsight - lol! Thinking back over the week I realised that I have eaten very little greens/salad compared to the usual amount. So I guess this might have had an effect. My warfarin dose was high too.

I now realise (duh) that I must think more carefully about what I am eating (and drinking!) I had two gin and tonics this week whereas my usual tipple is wine - not too much - honest! But I guess this didn't help.

I don't want it to go any higher as I feel a bit dizzy.

I guess all this gets easier ????????????????????????? pretty please :)

Lynn.x.

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stillwaiting
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Jade profile image
Jade

I cannot say it get easier sorry, not unless you want to be really boring and weigh your greens each day. Then of course hormones play a part in disrupting INR and can the level of exercise.

I have had yoyo INR for 9 years which is quite common. Mine tends to be too low. I have found, as I self test, that if mine goes too high for my liking if I choose to eat 3 heads of broccoli I can knock at least .3 off my INR by morning.

I don't drink so mostly it's greens that play havoc with mine as I hate having a boring regimented diet. I

I hope that reassures you a bit.

stillwaiting profile image
stillwaiting

Thank you Jade - I am going to make some notes as I go so hopefully I might learn what suits me best. You are so kind to reply - I appreciate it very much.

L.x.

So you are another person who gets more dizzy as it increases. Thats what seems to occur with me. When the level falls I actually feel better even though that is the danger zone for clots. You just cant win :-)

I havent touched any alcohol for years now. I had some at Christmas 2010 just after starting warfain. Then everything went ape and I lost my hearing. I think they said my INR was low at the time. So whether alcohol played a part I dont know. I have heard it messes with the levels but I dont pretend to understand it all. I have decided its probably better to do without.

Its probably better for my other organs as well.

My target is 2.5 In the last few weeks it has gone up to 4.5 then fell to 1.0 in a week. My reading today was 1.6. Crazy. I dont think it is easy at all for some people.

stillwaiting profile image
stillwaiting in reply toovernighthearingloss

One of my doctors said I could be resistant to warfarin - then today I proved otherwise - lol! If I did not laugh I might just weep and laughing is a whole lot better :)

Thank you so much for replying :)

L.x.

fchristal profile image
fchristal

I'm on Wararin 10 years now. I keep my diet the same yet at times for no apparent reason (I could swear it's stress related, but would be considered nuts) my INR will suddenly fluctuate from 1.5 to 9.3 within several days. I wish I could tell you it gets easier. I guess my best advice is to hang in there. I know it's tough. Best of luck to you. Let's face it. We're all like guinea pigs on rat poison and there is very little research being done compared to other diseases.

stillwaiting profile image
stillwaiting in reply tofchristal

Thanks for replying.

I do find the whole concept of taking warfarin scary especially when you see such huge fluctuations in inr. I feel like a naughty school girl when the nurse hovers over the warfarin /Inr machine tutting and asking if I've eaten my greens - lol! I have to stifle a gigggle as it sounds so Victoria Wood :) If I didn't laugh I would weep.

I have read somewhere that stress levels affect the way our body uses warfarin ???

L.x.

fchristal profile image
fchristal

Thank you, stillwaiting, for giving me a good laugh at a time when we're both frustrated by all this. It's 3:30am here in The States. I can't sleep - wondering if I'm ever going to bother getting tested again. I'm sorry I didn't offer you a more pleasant response. I know I'm supposed to raise the hopes of others suffering on this site. I promise to try to be more uplifting tomorrow. Be well. So happy to see you manage a sense of humor (even through your illness. I guess I need to regain my "stiff upper lip" thanks again! X0X, Florence

GinaD profile image
GinaD

Forgive me if I'm relaying things you already know, but it's not just greens and alcohol. Cranberries and ginger can raise the INR rather quickly. Organ meats, such as liver and pâté, lower the INR by such a huge amount that I dont eat them at all.

You might try writing down everything you eat and then go back and reasearch each food's impact on INR. I bet you'll find a pattern you can modify.

Gina

stillwaiting profile image
stillwaiting

wow Gina - thank you - I knew cranberries but didn't know about ginger or liver or pate. I had pate on Sunday so who knows how high it could have been on Monday!! I think the food notes is a good idea.

Thanks for your help - I really appreciate it.

lynn.x.

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