INR: Weird - or I am weird!! yup that... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Weird - or I am weird!! yup that must be it!

My INR target is 3 - 4

When it is in the 2's my gums bleed, I cough up blood and my throat bleeds when I cough - yet today my INR is 5, no bleeding anywhere!! how strange! But I have to say I do feel brighter and clearer in the head< but I have read on this site that is common.

I just thought I would share with you, when I think my INR is high due to the bleeding it is on the low side and when I think it is low due to no bleeding it is how - what a strange world

Smiles to everyone



12 Replies

Hi lesley,

When I have my INR tested if it bleeds alot it usually is low if it dosent bleed its usually high, thought it was just me, dont understand it you would think it would be the other way round?

sharon xx

Ditto here hmmm something to investigate i think!


here too. And now my 'new' doc is having second thoughts about my level. She is wanting to keep it under 2.

Lesley_D in reply to saralee

If mine goes near 2 I have been told by my hematologist I also have to have heparin injections until my INR is about 3! check it out Sara Lee :)

saralee in reply to Lesley_D

had it checked yesterday and it was still 1.7. talked to her and she did increase my dose and have it checked again Mon (takes a couple days to show). we did come to an agreement of 2.5 as my target and I do feel better about that. I do remember that every spring I have issues with my numbers though. Last year I ended up taking almost double my dose to get my numbers up and then went sky high and had a bleed. Thanks for your response and concern.

Before I started on the warfarin I was taking 2 x 100mg aspirin a day. If I dropped back to one I would get bleeding and ulcers in the nose.

I'm on warfarin now but still haven't got my levels right. The other day I felt fuzzy, headache etc and new I was too low. Finger prick said 2.7 and blood draw 3.2 so dr was wanting to pull back on the warfarin.

It's a struggle to get them to understand its not just about the numbers but getting a level where we feel well.

I know that I am at the end my coping levels and I can't go on feeling the way I have been and being so unwell. That is no life at all!

WayneL in reply to tassie

Hi, Tassie.

My girl has very fluctuating levels and has been tested as regularly as three days apart.(Currently, once per fortnight) although she tests at home weekly so we have a comparison.

Her dosages alter very frequently, although until very recently, she was having 10 mg per day.

Previously, she was stable for very long periods (years).

In the last 3 yrs, this has changed to her current unstable levels. GRRRRR!

She also has had the very reaction that you have expressed here, and wonders if and for how long it might be before the darn thing behaves itself again.

Hope you're feeling better soon.

Wayne L

jessielou in reply to tassie

Hi tassie

sorry you feelin so low hon. Feel same. Lets pull duvet over our heads n have a grumpy day. Does get us down but at least we know others here do understand. Just gotta keep kickin butt with medical profession till they do.

Trying to get inr around 3.5 and I would feel human!!! Ish!!!

Most important is that twisted sense of humour we all seem to have!! Smilin when someone says you look well today, while deep down wanting to rip their head off!!! Wonder what they'de do if we told em how we really feel!!! Mmmm might try it!!! Better not rip any heads of though. Not good customer service when you running a pub!!!!

Hope you feel better soon hon. Up the inr i say!!!!

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)

When my inr is low i get blood in my nose this is quite bizarre.

Thanks wayne and jessielou.

You know I'm beginning to think that depression is another symptom. When my INR is higher and I'm feeling better I don't have that all consuming depression, as soon as it drops it comes back.

So true about people thinking you are well when you feel like total crap inside. ...if only they knew ....really knew what it was like.

Interesting how many experience the bleeding in the nose with low INR.

that is very tru Tassie i think sometimes people find just ranting on her is the only way to feel they not on there own and i have the same issue with my INR when low everythings feels 10 x harder

Hi tassie

I'm sure depression is a symptom although having a chronic illness like Aps etc is reason enough to be depressed.

Coming on here n having a rant helps. Feel free hon.

Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)

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