Sticky Blood-Hughes Syndrome Support
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INR shot to bits

Brief timeline

DVT & PE 2012 warfarin target INR 2.5 just started plaquenil with St Thomas's 2 months in of 3 trial.

Oh joy ..... Was meant to go 8 weeks but asked for a test after 4 which was just as well as then had 2 weeks of low count of 1.8 and only minor adjustments to warfarin dose been feeling 'off' for few days then last night I felt really odd and breathless just walking dog so went to GPs emergency clinic today rather than wait for INR appointment tomorrow. Glad I did INR dropped to 1.7. Doc did all checks but I knew I wasn't clotted anyway boy you know that feeling but felt like I was going too. So now I back stabbing the ol heparin for a week and in on Tuesday for next INR....

Yes I should have known better than put up with low INR for 2 weeks I am still target 2.5 as docs have deemed me not needing higher. Well not yet anyways.

Point is when you first get this you long for the INR gaps to be massive, they became a focus of self proof you getting better some how. Docs push for 8 weeks as you just filling up an appointment.

DON'T look at it this way as every time you are checked you are safe!

Too big a gap and you do not know how anti coagulated you are.

I am also going to kick up about this as this thing is dodgy enough without anyone not seeing or telling the importance of a low count. I feel awful absolutely drained like I running on treacle (yes I know it's not actually like this but that is how it feels)

I know it is cos I am stuck between the GP, local Haemo and St Thomas's at mo but want to make sure no one else goes through same as they may not be so lucky

9 Replies

Hi Cheddar Addict

Some people find that:

(a) they feel better with an INR around 3.5 - 4.0; and

(b) self testing is often a good option, although some people have issues with it.

Where are you from?



I'm in Sussex and under st Thomas's in London after local hospital haematologist referred me up. GP surgery deals with INR.

St Thomas's have said I do not need to have higher target at mo which went a bit against what doctor said on last visit up. I am back up there in month but am going to write about this.

As soon as I can afford tester unit I want to self test.


Ok, thanks.

Don't forget that diet should be consistent too, when on Warfarin, especially in terms of Vit K rich foods; Vit K is a Warfarin antagonist. You need to try and eat a similar quantity of Vit K each day, hard to achieve but do your best.

Best regards.



Brand new to the forum after a visit to hospital today drew me to the NHS choices website for AntiPhospholipid and in turn to the chat page.

I was diagnosed a couple of years ago, following illness and several DVTs, 1 regular PE and one bi-lateral.

Like you, the feeling of being therapeutic and not needing to be bled every week or fortnight is a good one, but don't forget ANY new meds will mess with your INR.

I have found that on prescription, nearly every medication I have ever been issued will have a warning marker flash up in the doctor's screen to say it may interact with warfarin. As a result, the warning is "OK'd" because I can't stop taking warfarin and I invariably need the new medication (anti-biotics or whatever). What doesn't automatically happen is the booking for an INR test, but if you are on the yellow slip system (or even with books) it does state that a change of medication, bruising, bleeding, etc should mean re-test.

Good luck with it all - and with the trial.


I love your analogy of running on treacle I know exactly what you mean . I went for my INR yesterday 31/3. it was high but on target 2.8 I am supposed to be between 2-3, .the nurse said the Computer was saying come back in 8 weeks YEEEK NO WAY , so she kindly booked me in for 6 weeks instead, you would think that regular 2 week or one month checks would be good, knowing how anything can effect your levels at present I am also waiting for a referral to hospital regarding my ana being slightly positive ?? sorry rant over fell better now


I'm surprised that they go as long as 8 weeks with your fluctuating levels. I live in New York city and have aps and also have target 2-3 but it goes down in the 1's then up in the 2's. When it goes too low I go for testing every 2 weeks then when in target for awhile monthly. I wish you the best. Self testing is not paid for or recommended here. Diet is crucial but so hard. Hope as works out well for you.


Mine is at 2.3 I was not feeling right and had a black eye and nose bleeds evey moring not big ones so I phoned the INR clinic and they told me to phone DN to come on Monday in stead of the the week after it had gone up to 2.8 so got to go 2weeks now no chage to my meds


I note you have had some good advice already, but I am glad you are going to take it up again with the hospital in more detail as it is clear things need to be kept as level as possible, and of course Dave is right about the even diet! MaryF



Oh how I know how you feel big time. I found it wasnt the doctors so much as the receptionists and secretaries. I have had arguments with my surgery because the receptionists wouldnt book me into have my bloods done for 10/14 days between appointements because they felt that I didnt need them. It didnt even get to the doctors and when I stated to the RECEPTIONIST hey this is my life and I want to continue it or I may die with blood clots I was told SO WHAT. I reported her to the manager and she told me that the lady concerned was a very caring person. What a joke.

In the end when I had my hospital appt. with the haematologist she went Luppy and sent a letter to the doctors surgery. Now if I want a blood test within an hour I will get one. Go to the haematologists. Tell them your problem they will get it sorted. The problem with all of us we dont want to make waves 90% of the time we are not well enough. Well ladies and gentlemen it is time to stand up. We deserve a decent life away from all the cr** we normally receive and feel.

Sorry to come over so strong but it is something I really feel passionate about.

Good Luck to you all.



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