Sticky Blood-Hughes Syndrome Support
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Can I motivate for checking my own inr levels as well as anticoagulant clinic?

What a relief to come across this forum! I was diagnosed with ALS about 15 years ago after 2 dvts a year apart. I have been on warfarin since and dose has increased over the years in order to remain in inr range 2.0 to 3.0. All the comments about low inr,high inr and feelings now make sense.

I've just had a call to say inr 1.3 . I went to bed last night very tired,woke feeling tired and have slept till 10.00 (woken by 'phone). Feeling very weird still, 'zingy' ears/tinnitus, chills, nausea, coordination off and brain fuzz. Advice 13 mg tonight ,back onto 9 mg and test in a week.

Also explains previous faints and falls! Thanks all..

5 Replies

Hallo there,

You write you are diagnosed ALS 15 years ago. I guess you mean APS? Where do you live and who is treating your APS now?

I understand you have had a call saying you have an INR of 1.3. Your therapeutic range is 2.0 - 3.0.

Anyway that is quite too low INR. Please contact your APS-doctor in order to get rid of those terrible symptoms and get your INR in range..

Please get back to us again!.

Best wishes from Kerstin in Stockholm



I agree with Kerstin.



Sorry typo! I live in West Berkshire, UK. I didn't know there were APS doctors?!

I've slept the day away only waking again now and feeling less tired but still fuzzy.

Thanks for your replies - I'll speak to my GP.



Hi milo

Have a look at this link, which will show you APS specialist doctors.

Best wishes.



Do you have APS? Who is managing your APS? When were you diagnosed?

Please answer these questions so we can help you find an APS-doctor near where you live. It is vital that you are right and well anticoagulated when you have APS.

Best wishes to you from Kerstin in Stockholm


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