What are your symptoms when your INR ... - Hughes Syndrome -...

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What are your symptoms when your INR is high?

WendyWoo50 profile image

Yesterday I had an INR of 9.8 and was experiencing crippling chest pain as well as random pains in my head (like having a knitting needle poking into my brain)

I was given vit K and rushed to the main hospital.

My kidneys weren’t producing much urine and what they did produce was thick and dark.

In hospital, with no temperature, I suddenly began to shake like a rigour. My obs were perfect but I couldn’t stop shaking.

Chest x-ray was clear. ECG was fine. Bloods were normal except INR and CRP (inflammation markers)

Has anyone had any of these symptoms when their INR was high ?

17 Replies

Sorry to hear this what a nightmare for you!!

Before your INR went so high, had you experienced a period where your INR was too low, or been in a flare up?

I have often felt terrible when my INR is at the top of my range, or has gone up too high. I can still feel my body passing clots from my groins to my lungs and have chest pain and pressure, TIA symptoms and pretty much most of the symptoms I have when sub therapeutic. 🙄

Like you I asked on Sticky Blood, about still having APS symptoms, even though my INR was at the top of my range or even too high.

Someone replied to me (apologies I can't remember who exactly, it may have been KellyinTexas?) and asked me whether I had been sub therapeutic during the last 2-3 weeks before my INR became high again. They were right, I had been sub therapeutics in the last couple of weeks.

They explained to me that we can still be experiencing the symptoms of having had a low INR or flare up, even though our blood has now become very thinned.

It's because it can take the body a long time to clear any clots/micro clots, that have been made when our lINR was too low. Its like my body is now able to clear up all the mess made when my blood was too sticky because my blood is now finally thin enough to get the blood flowing properly around my body.

I'm above my range at the moment but have been experiencing multiple of the types of symptoms I have when my INR is too low.

It's incredibly frustrating because I can guarantee that my INR will drop too low again in the not too distant future and then I will have to try and get my INR back up again. Once I get my INR up again, my body will then have to try and clear the clots made when my INR was too low. It's a vicious circle and because of it, my body is rarely ever clot or symptom free. As is the case for so many APS sufferers unfortunately ☹️!!

I really hope you're able to get your INR stable again and get out of hospital. Omg I hate being in hospital, as I'm sure you do too?? !! 😱

Take care for now, Claire 🤗

WendyWoo50 profile image
WendyWoo50 in reply to leakeadea

Thank you so much for your kind words and for taking the time to reply to me, especially when your do poorly yourself. You have really helped and given me a clear picture. I’m home now but returning daily for blood tests. I hope and pray you find answers and a balance soon. 🙏🏼 Xx

leakeadea profile image
leakeadea in reply to WendyWoo50

So glad to hear your home 👍.

APS is such a difficult condition to live with because it effects absolutely everywhere in our bodies and it's so difficult to keep our INR stable!

Please God they come up with a more effective treatment in the not too distant future 🤞.

WendyWoo50 profile image
WendyWoo50 in reply to leakeadea

I meant to say yes I have had a period of low INR then it jumped to 5 then after a sick bug 9.8. So my pattern follows the same as yours! X

leakeadea profile image
leakeadea in reply to WendyWoo50

It's like we have no control over our bodies!

If you look back at my more recent posts, you'll see I had an acute episode a short while ago, involving my pelvic area and kidneys.

I also had raised CRP levels and a sudden decline in kidney function but NO infection in the urine or blood??

I did get a very high temperature of 39.5 tho and this was making my whole body tremble.

I just couldn't believe how I was having such an acute episode without any infection. I'm discovering that APS can trigger some pretty horrendous and acute symptoms in our bodies.

It would appear that your sudden infection triggered an APS reaction in your body too, which suddenly became acute. As its an autoimmune condition, I'm thinking that our APS caused inflammation in our bodies and that's why our CRP was raised? 🤔

BTW how is your kidney function in general? xx

Leenalina1 profile image
Leenalina1 in reply to leakeadea

This was interesting Leakedea, thank you. I have also noticed that symptoms come many times delayed, even INR has gone higher. I am sorry to hear that you have symptoms all the time!

MaryF profile image

Gosh, that sounds very tricky, I am glad you were in hospital, did they find any infection, ie urine infection or anything? I hope you get some answers, you are not the first on here to have this happen, I have never been on Warfarin so not personally experienced a rogue INR setting!! MaryF

Mine has never been that high but I have certainly been aware when I go above 4.5-tricky to describe it but I don't feel well. Incidentally I was told by my clinic that if you get a sick bug INR will go up. Hope you get sorted soon. x

So I may be a bit weird here... but my body has an interesting way of telling which direction my INR is going. I get weird "pings" on my left side when its too low (thick) and the same pings on the right side when its too high. I'm having to get back on Coumadin after about 6-7 years of being on Xarelto, so we'll see if my body will still talk to me the same way.

Xarelto can not be checked by inr, so how do you know if your blod is to thin or thick?

Sorry I wasn’t clear. I was on Coumadin for 2 years - then they moved me to Xarelto for 6-7 years, and now I’m recently back on Coumadin.

Lure2 profile image
Lure2 in reply to MW_with_APS

I suppose it was a Specialist of APS who decided you should change back to Warfarin. At least I hope it was for your own best.

What therapeutic level have you got now. Selftesting?

MW_with_APS profile image
MW_with_APS in reply to Lure2

I had a second PE in early April and my specialist and I agreed to move me back to Coumadin. The new studies (2018) that they showed me stated that the new drugs, such as Xarelto, doesn't thin your blood enough and consistently enough, leading to more thrombotic events than that which occurs of APS patients on Coumadin. Having only been back on Coumadin for 2 weeks... I'm still getting my numbers and diet stablized. Just waiting for insurance to approve self-testing.

Lure2 profile image
Lure2 in reply to MW_with_APS

What therapeutic level have they decided you should have on Warfarin? (INR-level)

MW_with_APS profile image
MW_with_APS in reply to Lure2

They want me to be 2.5-3.5 for normal life and see how my body feels within that range for 6 months... When doing my adventure sports - whitewater kayaking and climbing, they are happy for me to be at 2.0-3.0.

Lure2 profile image
Lure2 in reply to MW_with_APS

You know I am not a Doctor but I have been on this site for 7 years and read a lot about APS.

An APS-Specialist usually knows that we need an INR over at least 3.0 or better over 3.5, otherwise the symptoms do not disappear. We do not bleed from this illness but clot! Many members here go around with too low INR and have a lot of symptoms because the Doctor does not understand what it is all about.

Lure2 profile image
Lure2 in reply to MW_with_APS

I can understand the Doctors worry about your sports and bleeding, but when you are too low in INR, you have not the proper help from your Warfarin thinning your blood correctly. That was ev the reason you had to change to Warfarin. Hope you have an APS-Expert to talk to.

We are all different so i do not know how bad symtoms you have (I understand you have had trombotic events) but I can tell you that several of us know exactly when the Warfarin (as to the INR-No) is helping us (we feel bad under an INR of 3.5 some of us) , as the symptoms (I talk of the neurological symptoms that so many of us have here) get better or disappear.

Try to read " Sticky Blood Explained" by Kay Thackray.

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