Sticky Blood-Hughes Syndrome Support
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INR and feeling 'Well'

Hi , thought I would just note down for others a little 'episode' that is ongoing at the moment as it has struck me like running into a wall how my blood state allows me to feel.

Have had a few too many weeks feeling a bit 'off' in last couple of months... the usual 'is it just me' type stuff.. lethargic, stiff legs, and memory like a sieve.. and then last week or 2 I have felt a bit 'normal'.. well until the other night anyway.

Something stupid happened, I swallowed a crown that popped out whilst eating the other night, why worry I hear you say?.. Well it has this sharp metal spiked post sticking out of it and I was 4 weeks after last INR so I called 111 who said go to A & E who sort of weren't sure what to do with me but luckily yet again got ace treatment, BP monitored and X-rayed and it was sat there, en route in the small bowel. They also did an INR at 8.00pm that night, about the time I would take Warfarin normally and it was 3.2 so they decided I should leave it that day. My target is 2.5.

Anyhoo all night in A & E after transferred to bigger hospital and next day get another X-ray and Bloods done again around 10.00am with BP being monitored every couple of hours it shows it had moved on to the large bowel so was beyond... . easy location.. and they decided to discharge me and let nature run its course...

But before I left I pushed for my INR result from the morning test.. it was 2.2 which surprised.. no shocked me I suppose as to how quick it dropped so far.. Now I am feeling rubbish and not sure if it was the sleep deprivation of A & E or count.. Get nurse to ask what I should do and we speak to anticoagulant doc who says just resume dose that night

Anyway on way back home I make appointment with GP Surgery to try and get INR checked in next couple of days and they fit me in the day after (44 odd hrs after missing dose) and it has dropped again to 1.9! and I have appointment to review next week.

Now I finished the jibber jabber a couple of things really jump out.. This is for the 'Newbies' like me I suppose as we are all learning/coping/adjusting still

I feel rubbish.. tired.. really have to delve deep in my head with pauses to find the words that work for me whilst typing this.. it feels like someone has turned that imaginary tap on in my legs that make them feel like they are heavy, full up with blood.. Coincidence?... I think not!

How quick was the INR drop!

DO NOT miss your dose slot, be regular as clockwork as it might throw you right off like it has me. Lets hope it stabilises quickly.

I used to yearn for my count to be stable enough that the weeklies become a month or 6 weeks gaps, Now I want to know what it is every time I feel grotty. I will save for my own machine somehow and even if they won't sanction it I want to monitor my INR.

If it goes off track I try not to worry about it, as long as it's not too far of course, it happens, just now I know I need to get it back on as soon as possible and I won't be phased if its a little high, it seems higher may suit me a little.

Is anyone doing any trials for 'Wellness' based on INR cos if they are where can I sign up!.. Lets hope this is on the agenda when I go back up to St Thomas.

That's was all really to show how quick INR's can go 'off'...

Oh for anyone remotely interested.... It's still.. en route...... I think anyway 95% sure .. hoping it's not facing the wrong way!

6 Replies

A worrying time, something spikey around in your gut, but pleased for you that nature appears to be taking its course - gently I hope.

Your experience with feeling low is a familiar one to many of us. Often I can be so low I am incapable of remembering why it happens. Having your own machine, if it suits you, is an enourmous help. I think many of us experience sudden drops, or rises, of our INR and having the ability to do an instant check is of great value- in the more extreme cases it is the trigger for me to inject heparin until my INR recovers.

I share your leg issues by the way, and often the only relief comes from lying down for a few hours.

The quickest way for one's INR to drop is to forget to take it (quite easy when you are on multiple meds unless you have a system in place- trouble is that there isn't a foolproof system that I have found yet, even a double or triple check one.

On the positive side when one's INR is right, and all the stars line up, life can be really good.

Best wishes for the avoidance of unusual toothache, and those lows. ;-)


(now going for a lie down!)


Thanks Tim, not glad but reassuring to know not alone with the legs thing its.. a weird feeling, like they are 'sloshy' and full up... I know it is just a sensation but that is how they feel.

I had missed an odd dose before and taken next morning.. I will be double alarm warning from now to ensure I keep it balanced.

I am hoping I am not the person on here who actually gets to bite themselves in the backside this week!


I think that your present target of 2.5 in INR is rather low for APS. Most of us feel better on an INR around 3.5.

I agree with Tim47 that I think you should try to selftest. I selftest and that makes a great difference.

Best wishes from Stockholm and Kerstin

1 like

Hi Kerstin, thank you, this is something that I have picked up this year from researching what little is out there, recently had reinforced on a lot that is here but mainly just from realisation that I feel better when its high and part of why I pushed a little and managed to get referred to St Thomas's.

I hope that it may form part of any future treatment changes that should improve day to day stuff.

I really want to self test, just will need to afford the machine company that make them is based in my town! I feel an email coming on!

'Dear Coaguchek Santa...... '

Thanks again


Good Morning CheddarAddict!

I have been on Warfarin for 6 years and today was the first time I could document a really quick drop in my INR!

At 11:30 am my INR was 5.0 for my regular check in at the anticoagulation clinic.

At 8:30 this evening, at Urgent Care for unrelated issue, they took an INR and it was 3.3!

I did not realize that it could drop so fast in such a short amount of time!

Agree with you that it is better to stay on schedule!


hiya :) i have been on warfarin for 16 yrs lol it is a pain in the butt but im still here,would just really like to know if theirs any cough and cold remedies plzzzz


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