why is my inr different than others?

[happee1]

i am reading that a lot of you need your inr to be between 3 & 5..my doc wants mine between 2 & 3...why is mine needed so much lower than others??

thanks in advance

[MaryF Administrator]

Hello, I am not sure about this, maybe it is something set due to him/her studying how your body reacts or it may be, that they do not possess enough knowledge, so it would be wrong for me to speculate. However plenty on here, will give you more detail, also you need a specialist rather than just a doctor. Rheumotology support or haemotologist. Kind Regards... Mary F x

[jessielou]

Hi happee

Mine too is set between 2 and 3, my inr nurse and I try and keep mine at 3, attempting to get St Thomas s to set it higher, Local haematologist agrees it should be higher. One day they may all listen!!!!

The reason for setting it at 2/3 is because although Ive had clots they were venous and not arterial, I want mine higher because I feel better above 3 and I dont want an arterial clot.

Most docs are scared of the higher ranges on inrs because of the risks of a bleed. One gp in my docs practice looks like a Rabbit frozen in the headlights, when I walk in!!!!!

I think we should be allowed to balance the risks and make our own decision. Especially if symptoms are better at higher ranges.

As Mary says a rheumy, haematologist are your best bet for a proper explanation.

I hope this makes sense, have a touch of brain fog this afternoon.

Hope you having a better day today.

Take care gentle hugs love Sheena xxxx

[Renae]

Mine too is set at 2-3, but I am one of those people who does not feel any different if my inr is 2 or 3. But i have bleed badly with an inr of 3.4 and required 2 transfusions..so i like mine right at 2.8..

Renae

[Gadgets]

Hi

I had to fight to get mine increased as I could visably and verbally show how much better I function with INR at 4.5. speech, balance, fatigue all improved at higher INR. GP only agreed after a letter from my specialist at St Thomas.

GP was / is nervous about such a high inr.

good luck.

Garry

[roymelt]

the main reason some people are higher is they have had a second clot while 2-3 because you drop i had second at 1.6 , so thats why they move you from 2-3 to 3-4

[jetjetjet]

hi happee 1-i started at 2.2 - 3 thus i started having problems , i brought info to G P and explained why i wanted set higher, my target now is 2.5 to 3.5 this is working better. my rheaumy wants me no higher than 4.0 but i will soar to 6.7 which freaks him out. i asked him about other people being set higher his thoughts were ,every body is different, in symtoms ,problems , metabolisms etc. ,he treats all his patients as individuals. im sure there is alot of common ground, but i can see his points also.my inr still isnt stable ,never has been, they test me every 3 days- a couple of weeks ago on monday i was 3.9 then on thursday i was 1.9 . this in just 3 days. im on warfarin , and also plaqunil 400ml a day on the plaq . i had clots in left knee , groin , both lungs , neck and in left arm pit.----------------------------- jet

[LesJames]

Hi,

I am going through the same issue, (I have had 3 diagnosed and 1 undiagnosed DVT's) and want my INR raised to between 3-4, because again like many my cognitive functions improve significantly at these levels. My Haematologist said No! because of a bleed and I was notified via my GP. So I asked my GP to for a referral so I could discuss it with her. He got a very snotty letter from her and she cancelled my appointment!. Some of you may find the information in the following document "CNS involvement in antiphospholipid syndrome" on this web site:

yassermetwally.com

I am now resorting to a begging letter back to her as she clearly feels that somehow or other she has been undermined!! My GP was just as bewildered as me!

[LesJames in reply to LesJames]

Sorry,

Particularly para 5 in the conclusions for this issue. However the remainder of the document is very informative.

[roymelt in reply to LesJames]

hi is your range 2-3 ,was told if you have more than 1 clot you have to go 3-4

[LesJames in reply to roymelt]

Yes, My range is 2-3 and I have had 3 diagnosed and 1 undiagnosed clot.

[tandtsmith]

the doctors try to keep my levels between a 2 and 3 also. my levels were checked the other day and it was a 1.2. they kept me on lovenox injections and increased my cumadin. wish you luck!!

[Sarita]

My INR has been set for 2-3 as well. Sometimes I end up 1.7 and sometimes 3.6. I had my PE 2 years ago, guess they need to see how it goes, and if they need to raise it, they raise it. I am still finding out a lot and it seems eating a regular diet without too many spikes of vitamin K means your INR will be more stable, allowing you to stay at 2-3 if you wish, or consult with haemotologist and Rhumy to put it higher if you need.

[Sarita]

sorry meant to say 1.7 and sometimes 2.6 in the first sentence

[happee1]

thank you all for your information ... i am going to my rhumy in a couple weeks..i will ask him...you guys are great !!!!

[Eliza_E]

I'm also meant to be 2-3.

[polkadot]

I started on 2-3 and got mine raised to 2.5-3.5 which seems to work for me. My haemotologist doesn't believe that your INR relates to how well you feel (eg I start getting headaches if mine is too low) even though other people have told her that as well. Grrr!

[WayneL]

I have observed in our daughter that when her INR's are particularly under her target range she has consistant migrainous headaches ad many other debilitating symptoms..

When her levels are at the top of her range they seem to abate slightly (to the point where a panadol will make them bearable at least) and she feels better.

Her original target was 2.5 - 3 , but has recently been increased to 3 - 3.5.

As i said before, she feels and acts much better when shes at the upper levels of her range.

Might be worth having this discussion with your specialist and see what they think.

If they question you about it, maybe you should ask them why they consider an alteration to this range such a possibly dangerous? action.

I might add that she has unstable INR's that make the warfarin difficult to administer due to the slow re-action time of the drug.(usually 2-3 days to take effect.)