Warfarin

Hi Everyone,

I am new at this so please bare with me. I have been on warfarin since last summer. I had a stable INR (between 2-3) for a couple months & now it has been fluctuating. I went from 2, then 2 weeks later 3 & 2 weeks later (yesterday) I was at 4. I was wondering if this could cause a "spacey" feeling. I have not been feeling great and it seems like I am in a fog or light headed. Has anyone ever felt this way before?

34 Replies

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  • I feel that way when my INR is too low. Hopefully you will find an INR where you feel good most of the time. Warfarin is a nuisance as so many things affect it so keeping a steady INR is a challenge and often impossible. Mine goes up and down with no rhyme or reason. I tend to have a very boring and consistent diet and medication plan so not really sure what causes mine to fluctuate so much.

    So yes having an INR too high or too low can affect the way you feel and different people will react differently.

  • Thank you for responding. I have changed my diet over that past month to sald & egg whites for lunch & have a a glass or two of red wine since I started feeling this way. My hematologist said my INR level will not make me feel lightheaded or spacey but I think he is oncorrect. I have never had an INR of 4 before & I have never felt this way before. I hope by him making me skip a dose will help.

  • I'm wondering if your inr has gone up because of the wine. My inr can go up from 3 to 4 if I drink red wine. On holiday once it went up to 6 because I was having more alcohol. Personally I feel better when my inr is at the high end of my range (3.5-4.5).

  • I am thinking that is a main reason. I rarely drink & when I do I have a glass or 2 of wine. Sometimes I go a month without anything. In a period of 4 days, I had 6 glasses of red wine. I have not had any since Sunday and my hematologist (on Monday) told me to skip a dose of warfarin on Tuesday. I feel so much better than I did on Monday. Thank you so much for responding. I feel like maybe I will have a grip on this :)

  • You sound just like me!! I only drink on holiday and have at least 2 glasses a night!! The INR is affected because drinking is not a regular occurrence for us. One thing I will mention, though everyone is different with their INR and warfarin intake, I am currently on 10mg and if I miss a dose my INR can drop by 2.5. So its good to get checked regularly.

    Take care x

  • Does it make you feel "spacey" or "foggy" when your INR is higher?

  • I feel foggy when lower. I much prefer my INR to be around 4. At the moment it's at the lower end and my legs where I had a dvt 22 years ago is aching, I've got a headache. And can't. Think straight!

  • That is what alot of people are saying when they are lower but mine was higher. So strange. I am going to get a blood test in an hour and have been feeling alot better so I am keeping my fingers crossed. I hate the feeling of not thinking straight. I noticed it last week when I was skiing. TIME TO GET OFF THE MOUNTAIN! Good luck to you!

  • Perhaps the altitude affected you and the INR!

  • is that possible?

  • Green leaved vegetable with Vitamin k have a negative effect on warfarin where they reduce its effectiveness. So its important that you dont vary these in your diet otherwise the INR will vary while taking the same dosage of warfarin.

  • Thank you for responding. I told my hematologist that I have switched to a salad and egg whites over the past month. He told me that will make my INR levels low not high and that my light headed or spacey feeling is not related. I don't think that is accurate. He made me skip a dose & I have to get re checked. I hope it will go back to normal soon.

  • Hello and welcome, its lovely to have you with us. Unfortunately APS can make having a stable INR difficult at times. Perhaps start a food diary so that you can see if any changes in INR are related to a particular food. Other than that it can be a bit of a lottery. Have you changed any meds you are taking recently that could account for the change? Some people say the weather affects their INR so if its really cold or hot although I dont think there is any statistical proof of this.

    Bottom line try and be as methodical as possible. Let us know how you are doing. x

  • Thank you and I will keep you posted :)

  • another cause of fluctuating is when you lose weight. Or even if you drink or sweat more (at least taking sintrom..i think with warfarin is the same). Here in Andalucía our last summer was too hard, I was sweating all day and my INR increased until 4.0. I was 2 or 3 months in 4.0 despite decreasing the dose.

    Before getting married I lost weight and my INR went up again.

    Ohh, and I forgot that in my case too, when I am very nervous or have a drama or tragedy my INR can elevate until 5 or more suddenly.

    Conclussion: what a s**t!!!!! jajjajajaj

  • Oh no, I hope weather does not play a factor into this. I am going to Cancun next month. I will go from freezing to sweating. I am thinking of going to another hematologist for a sedond opinion. I was diagnosed with antiphospholipid antibody symdrome and was put on warfarin (sp). My questions reall do not get answered from my current dr. Thanks for chatting :)

  • every person is different. Try not to worry because your INR can be perfect in hot places. Relax and enjoy your holidays. Just check your INR there if you're gonna stay long time and don´t forget to tell your doctor about your journey.

    Kisses!!

  • Thanks. He said he was going to prescribe me monitor but I have heard a word!

  • I feel your pain!!!! Sorry I had to edit your word but we like to keep a happy ship!! :-)

  • jajjajajjaja sorryyyyyyy. I´m not very used to forums. Also, I'm Spanish and my English is learned

  • Hate to tell you this Tinkyb, but everything -- E V E R Y T H I N G can effect INR. Amount of water you drink -- weather -- amount of sunlight exposure -- amount of exercise (and what kind)-- food -- drink -- you name it! Of course its different with each patient. Keep a log until you can reason your way through your own body's metabolic tweaks. But you can get everything to even out. It just takes practice. As with other posters, I associate light headedness with an INR that is too low.

    Much of the INR variances can be reasoned out -- for example, a warmer climate is apt to cause sweating and concentrate the blood, which would tend to thicken. So -- stay reasonably well hydrated. Now don't chug water -- that could get you too hydrated (I know -- this sounds unreasonably complicated! stay with me!) Instead, try to drink the same amount each day and add a tad more if you are sweating a lot. I have learned to drink a full 8oz glass of water 4 - 5 times a day. On hot days I drink @ 16 ounces more depending on activity level.

    Getting inside a food/drink/exercise rut is a good thing when one is on warfarin. I like green leafy veggies, so I try to consume a bit of them each day -- amount depending on relative Vitamin K content. Google coumadin and diet and you will find charts showing vitamin K contents of foods. You will find that liver is loaded with K -- I avoid liver (though I liked it.) Kale has quite a lot; iceberg lettuce practically none. So, since yesterday I got the Tuscan Bean Soup with Kale from a wonderful local produce mart I asked them to avoid spooning as much kale as possible into my bowl and I avoided the broccoli for dinner and stuck with the iceberg lettuce.

    It is annoying to have to calculate things which one used to ignore.

    But you will adjust. Just give it time. And practice. We're all different and we have found that while some will see an INR rise with a lot of sunlight, others will not.

    A big medical secret: Hematology, rheumatoid factors and the mechanics of clotting cascades are marvelously intricate and complicated. Most docs who are NOT hematologists and rheumatologists are confused. Keep a chart and if you find that if your light headedness is consistently associated with a high INR then -- there. You have discovered a personal "tell." You can be diplomatic with the docs who may tell you this is nonsense. They don't have to know. You're the one who is really in charge after all. And if you discover that all things being equal a light headedness means your INR is low, then if you feel light headed go have your INR run.

    With me, if I don't sleep on a nice, feather or down pillow the back of my head sometimes goes "to sleep" when I am asleep. That is my most consistent tell that my INR is too low. If I get bruising on the inside of my right forearm, that is the tell that my INR is too high.

    Its complicated. We're all different and our bloods play by different sets of rules --- though the trends can be similar.

    You will figure it out. Be patient. And I'm glad you found this group. We're here for each other.

    Gina

  • Thank you so much Gina. I guess patience is the key.

  • The 'uniterested' heamotologist my husband went to see told him "oh! just eat and drink what you want ... every one else does" when we asked about foods....really useful!!!

  • AMEN Gina, all you wrote is PERFECT

  • Hi -Tinky- i have always had trouble with my INR being all over the place- diet and meds all under the microscope - dosn't help at all with me in the last month i have been 7.7 to a low of 1.1-had superficial clotting -am on warfarin and hydroxychloraquine--- they test my blood every 3 days-some people will never be theraputic.but do try some things that are mentioned and as far as alot of sun ,last summer the sun started causing me trouble for the 1 st time in my three and a half years of this disease. my diet was a big factor in getting me better. i also have other problems diet related-- if i followed all the many dc's cocerning my diet i would be on bread and water -BUT it dam well better be Wheat Bread.. and i have told them all that- how does your Dc feel about the flying ?????----- curious about that one -- let me know ---- jet

  • I told him that I am flying & he was not concerned. He did tell me that he is going to order a monitor for home use so I can check my INR when I am gone & call him if the results are out of wack. It is sooo frustrating. You mentioned the sun. I did start going to a tanning hut but the minutes I spend in it is minimal. I wonder if that is effecting it??

  • One question, when your is high, are you light headed?? I feel so much better today. My doctor told me to skip my warfarin dose last night. I honestly think it made a difference.

  • Regarding the self check machine: I do not use one but they are not specifically accurate to a more detailed INR evaluation. So, you should have your INR double checked by a traditional blood draw AND you new self check machine for the first time or two so you can learn to approximate what the new machine is actually telling you.

    I wish I did have one. Though for a couple of years I was having my INR run by a lab that used that same technology as the self check. For me I noted the machine tended to report a number . 3-.5 lower then the result from a full blood draw INR.

    If you fly, try and arm yourself with a note from your doc advising you to have bulkhead seating with more legroom. And make a point of getting up to walk about a bit every hour or so.

    Have fun!

    Gina

  • Thanks Gina. That is a good point and I will make sure I geta note from my Doctor.

  • HI there, I am a little late joining the discussion, sorry power cut with electricity supply in my own area. I am glad to see all the detailed responses going in response to INR. You will find good support on this forum and welcome! Mary F x

  • Hi,

    I don't know if anyone already mentioned this - apologies if so. Beverley Hunt at St T's told me that it is typical for somebody with APS to have a fluctuating INR. I'm sure she said that anything above 1.7 and up to 4 she wouldn't be worried. My INR is meant to be between 3-4, but on the same dose it can vary quite a lot, last result on Monday was 2.8. the one three weeks before that was 4, same dose of 14mg Warfarin.

    God luck Sue

  • Oops I meant to say anything below 1.7

  • Hello! I was on warfarin for 9 years and was only stable probably once for one week. I had my own home machine to test and constantly had to go up and down. And it didn't work for me either - I still kept having clotting events. I read about Lovenox when Lynette directed me to the Hughes Foundation site back in 2003 and gave me Rheumy the info and we switched to Lovenox injections once a day and I haven't had a problem since. I'm not saying to give up on warfarin I'm just saying that I know how frustrating it is to go through all that. I did used to find when my inr was high I felt "floaty" and sluggish when it was low. Take good care of yourself and keep in touch with your doctor. And keep reaching out for support - it really helps. Hugs, Laurey

  • I am glad you said you felt "floaty" I was beginning to think that was just me. My INR has been regular for the past month now. I am so happy. The doctor wanted to order me a home testing unit but I declined. I have to monthly now to get checked. I am trying to have a consistant diet so it has been helping. THanks for your support.

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