INR Level Low

I saw several posts that people feel dizzy, fatigue and just plain off when their INR levels are low or high. I told my wife a few days ago I was very fatigued and dizzy and I said I bet my INR level was of, two days later went to GP it was 1.3. I have been diagnosed with APS not sure if this is the same as Hughes Syndrome. Anyway my GP said I shouldn't be able to feel when INR is low but this is the second time this has happened. My GP also insist my INR level be between 2 and 3 I have heard it should be higher, he is very reluctant to refer me to a rheumatologist. Please I need help with information that will back up my thoughts that my INR level should be higher. Thank you for any help it will be much appreciated.

[tim47]

APS is indeed another name for Hughes Syndrome. Who diagnosed you with it, your GP?

Your symptoms are common place amongst many of us when we havea low INR. Those of us who self-test can be pretty confident in such circumstances, that our INR check will show a low.

If you have had a clotting event, such as pulmonary emboli, then it is quite common for specialists to give you a target INR in excess of 3.0 but no more than 4.0. Otherwise it may indeed be up to 3.0 .Alternative non warfarin therapies exist if warfarin may not be appropriate.

You need to see a Rheumatologist, but not any old Rheumy but one on the list that is available through this site- see pinned posts on right (assuming you are in UK) If you have any trouble getting to a knowlegeable one then consider seeing Prof Hughes (after whom it gets the name) privately if you can. He is at the London Bridge hospital and a consultation will, without bloods that you should get done through your GP, cost around £200 at my last count.

Good luck with it.

Tim

[tim47 in reply to tim47]

Should have added that a referral, to Guys/St Thomas' if you can manage it,might be the next best thing to seeing Prog Hughes.

[Hidden in reply to tim47]

Thanks for the reply, I should have mentioned I am in the US and I have have a past history of ischemic strokes. Do you. Know of any references in the US. Thank you for your help.

[MaryF Administrator in reply to Hidden]

HI I have just seen that you say you are in the US, there are some really useful names on here: apsaction.org/ Also if you say where abouts you are there are many members from the USA on here, who may also have some ideas for you. MaryF

[MaryF Administrator]

Hi there and welcome, are you in the UK? Your GP as well as yourself needs a medical consultant with full knowledge of this condition to guide your care. We have a data base of doctors across the UK. If you GP is not listening, please take your most trusted friend, relative, neighbour or colleague to stress the importance of being referred, Of course it affects how you feel if your INR drops, and often Hughes Syndrome/APS patients need a higher INR. hughes-syndrome.org/self-he... It is also a good idea to familiarize yourself with the entire charity website, which you will find very useful. MaryF

[Zezes-nan]

My inr range is also 2-3 I was diagnosed following a PE in June 2009. My INR range has always been 2-3 but reading the other posts I'm concerned it should be higher.

I see a haematologist, I asked to see a rheumatologist and was told I didn't need to. I've asked my GP on several occasions and she says I'm seeing the correct team. Should I ask the haematology team to refer me to a rheumatologist?

[Lure2 in reply to Zezes-nan]

Hi,

After you started Warfarin and was diagnosed after your PE in 2009, have you had symptoms of your APS? How often do you cheque your INR? Is it usually 2.0 or 3.0?

I am primary APS and I feel ok when I am on a steady and high level of INR. I know today much more about my illness than for say 4 years when I started warfarin.

We have very thick blood and the key is to have it properly anticoagulated. My therapeutic level is 3.2 - 3.8 but i feel not good at 3.2. I rather have 3.8. I selftest every second day so i know how much the INR can bounce.

Good luck to convince your GP that you are not properly anticoagulated.

Kerstin in Stockholm

[Hidden in reply to Lure2]

MaryD from Chicago area here. What do you use to self test? I have a small meter but I have seen on this site that even the manufacturer doesn't support self test for accuracy.

[Zezes-nan in reply to Lure2]

Hi Kerstin

My therapeutic range is 2-3 and I feel okay when its around 2.5 to 2.8. I have it tested about every two - three weeks as its remained steady, if it changes I have weekly tests. The haematologist who first diagnosed me back in 2009 decided that was my therapeutic range and all the haematologists I have seen since agree.

GP is very supportive and feels that this is something the haematologist should be monitoring.

Take care

[tim47]

I use the Coaguchek XS now. Used its predecessor before. I get a cross check with a venous sample around the time I start a new batch of test strips. The cross checks have always shown the coagucheck to be as accurate, within 0.1, as the venous sample.

They say it doesn't always work for those who are LA positive (I think that's the test) but it does for me even though I am, and for Kerstin I think, amongst many others.

[jetjetjet]

Where are you wolf ... in the States ??

[Hidden in reply to jetjetjet]

Yes in the U.S. On the east coast.

[jetjetjet]

Where- I am in N H. Concord area !!

[Hidden]

Jet I am in the Bangor, Maine Area