How to increase INR naturally? - Hughes Syndrome -...

Hughes Syndrome - APS Support
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How to increase INR naturally?

gazaeee
gazaeee

How can I increase my INR naturally?

Many have said people with APS feel better with higher INRs but my therapeutic range has not been adjusted from the usual 2.5 post APS diagnosis.

I feel very weak and slightly nauseous and I have a strong suspicion my INR is below 2.5 right now.

44 Replies
oldestnewest

My last self test 4 days back gave a reading of 2.9 which was 0.4 over my parallel introvenus test. Not knowing about the difference at the time, I went on to consume more K than usual to bring the INR back down a bit. Now I think I must be running quite low (closer to 2) and wonder if it can be causing me to feel very weak, slightly nauseous and a bit shivery. I'd self check using my Coagucheck but it's obviously not accurate!

Clinic and doctors are closed on weekends and I don't know who can request a higher therapeutic ranhe

hihannula
hihannula
in reply to gazaeee

I get very weak nauseated and lightheaded when mine is low as well. It’s hard to know what to do, because I have similar symptoms when my INR is too high, so I never know weather or not to eat more K or back off the K. I try to eat my K1 foods, and take my K2 supplements consistently. It keeps your INR on track most of the time. Exercise, stress, heat, no sleep, etc can cause INR fluctuations regardless of how consistent I am with my with my K’s.

My rheumatologist highered my range after I asked him too. Alcohol would make the INR higher but maybe someone else could give you a better idea

Hi I think Kelly in Texas 11 days ago suggested you should look for a Specialist who understand that you need a much higher INR than 2.0 - 2.5.

She said that most of us need an INR around 4 to be ok. Please look for a Specialist who works with autoimmun illnesses every day and especially with Antiphospholipidsyndrom.

You can not change your therapeutic level set by a Doctor who is responsible for your treatment without his consent. Look for another Doctor. You take Warfarin obviously and I wonder who gave you this drug. The same Doctor who tells you to keep an INR of 2,5 or ?

gazaeee
gazaeee
in reply to Lure2

Yes 2.5 seems to be set as the range in the first instance for anyone with clots. At least here in the UK. Unless you continue to clot (which in itself is really hard getting them to check-most in the machine are super cynical about that possibility) or subsequent get a diagnosis of some sort of disorder, you're unlikely to have them change your INR.

GPs can't do it and the Anticoagulation clinic staff can't either. It needs to be directed by the doctors I'm not getting to see!

Monday morning I'll make an appointment with my GP to request a referral to specialist consultant. Who I hope will retest my bloods, investigate my symptoms, up my INR and advise my local GP.

gazaeee
gazaeee
in reply to Lure2

When I asked the clinic who determine my dosage, to up my INR since I have now had APS come back positive, they said it doesn't need to increase because of that. That they have APS patients on 2.5 also!

Lure2
Lure2
in reply to gazaeee

Yes that could perhaps be possible if just one positive antibody and no symptoms but I think I read that you had symptoms. So the Doctor who diagnosed you set your INR up to only 2.5. I doubt he or she

Try to find a Specialist of Antiphospholipid syndrom who understands if you have symptoms! We know that is a fight really.

Also the Coaguchek XS often give a higher reading than the reliable veindraw at the lab.

Do it for the sake of your own health and Good Luck!

gazaeee
gazaeee
in reply to Lure2

Thank you Lure :)

They basically set my INR after having the PE diagnosed. While there they took my bloods to check for things like APS. The results took a long time to come back. I had to chase it up and never actually got to speak to anyone since the result came back. So it basically feels no one has owned it to take a look and say...right we may need to up this guy's INR and set him up for a retest

Lure2
Lure2
in reply to gazaeee

What I now understand you have not seen two positive bloodtests for APS after the DVT and PE?

Perhaps you do not have APS afterall. Ask for the two bloodtests done twice within a 12 weeks time and talk to the Doctor who gave you Warfarin. I do not understand how this happened but I have not followed you as I do not answer here anymore just very seldom like today about Warfarin and INR.

gazaeee
gazaeee
in reply to Lure2

Yes correct. Well I am tremendously greatful to you for replying to my posts. The last 3 months have been a real emotional roller coaster for me and finding knowledgeable and helpful people like you in this forum has keep me falling off the edge.

KellyInTexas
KellyInTexasAdministrator
in reply to Lure2

❤️❤️❤️🥰🥰🥰

Hello Kerstin!!!

How are you?!?!

We miss you!!!!!!!

Drink more alcohol. I find exercise also tends to reduce INR, so definitely don't exercise either :-) More seriously, eat less greens, a lot less, particularly stuff like kale & spinach, until it comes back up.

That is all short-term stuff though, longer term it is futile, if you need a higher range you will need to agree it with your doctors - if you push it higher on your own they'll just reduce your dose to match.

gazaeee
gazaeee
in reply to Ray46

I don't drink alcohol and don't take much K or excercise much. You're dead right about it being futile without the clinic determining the dose being on side

MaryF
MaryFAdministrator

Hi, please don't attempt to do this without the help of your main Hughes Syndrome/APS specialist, you need a doctor with the right level of expertise with this disease to help you with this. Mary F

gazaeee
gazaeee
in reply to MaryF

Hiya.

Not going to mess with what medicine I'm taking but I'll reduce my excercise a bit. Don't eat much K already...which is probably why my INR 3 months in isn't stable. Just bought a recipe book to help me with this but I'll talk to the clinic first before starting it....need to go more regular with the testing when I start

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

I suggest reading a book “ eat on warfarin” by Cath Atkins.

She also has APS.

The trick is consistency in greens as a baseline- then adjust up or down from that as needed depending on INR results.

Lure from Sweden - who is on this thread, is the lady who taught me all about greens when I was first diagnosed with APS and cane on this forum ( late 2016.)

I took her knowledge, and showed it to my doctors, and they were very pleased. ( APS is so aggressive we need to learn to think of vitamin K as a “helper” medicine to balance our warfarin up or down .

Greens 🥬 can impact the INR in 12-15 hours , where as warfarin takes 24, 48 and up to 72 hours .

Sometimes our bodies do just react strangely with the antibodies and the INR has a mind of its own despite our diligent efforts.

You know with this it can just overwhelm us and get us down. I bought the Dr Coumedin book for ideas but I also just read in another thread could help with the fatigue I've been having. Between consistent greens and low carbs and a healthy low cholesterol diet leaves we struggling for ideas

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

It’s not easy.

My INR was initially set at 3.0- obviously too low for me, however I had only had one clot at that time- and titers were not terribly high at all- quite low.

But it would tank to 2.1, 1.8... and so on.

I felt terrible, migraines, and burning veins.

My Hematologist and GP wanted me to get a second opinion.

We chose London lupus Centre as my mother had died from clotting- Ongoing clotting events... all matching Hughes syndrome- ) undiagnosed at time of clotting and death in 1996.

Dr Hughes told me the problem was my INR was set too low. It needed to be at 4.

( I had been diagnosed with seizures 4 years prior, was having multiple addominal surgeries for paralytic ileus, and was loosing vision permanently in optic nerves due to ischemia.)

This helped tremendously- no more bowel ischemia! I have gone on to have many more DVT’s in arms, and terrible migraines and progressively worse livedo racemosa and riticularus.

My INR was raised to 4.5 - and I still developed DVT’s. ( even with 10 mg aspirin.)

The problem was my INR could bounce up, so it really wasn’t that safe to add aspirin with an INR that high. ( I get my INR drawn by vein every other day and the lab calls me directly with results as well as my GP as soon as they get results. )

I was switched to LMWH, but I did clot through unfortunately.

When I clot, I start clotting everywhere. Bowels, limbs, heart..( my Rheumatoligist called it early caps , or a mini caps storm.)

I was trials one a very high dose apixiban plus clopidogrel. ( 10 mg twice daily, but I did go higher in an emergency situation.)

It only lasted about 10 days. I developed 2 DVT’s, seizures, a probable TIA, and horrific migraines.

I was switched back to warfarin with an INR of 5.0-5.5, and Rituximab was started.

I just started my third set Three days ago.

I will say it is helping! It took the 4th infusion ( two full sets) to start seeing results.

Kelly you sound like a very strong person. You've obviously had it very tough. I really really hope the latest round of treatment is successful

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

Well, I try. I appreciate all my friends on here.

My point of telling you this is it’s not usual at all for it to take a while to get the INR right, and to get the doctors in place to give you the specialized care you need.

What may work for one person may not work for you- but in general the concepts will be overarching.

We may have a different grab bag of mixes of autoimmune diseases, flavoring the picture a bit differently as far as medications tolerance, interactions, or specifics.

Be a patient patient! It will take some trial and error, but never to a point in which you feel in danger.

You must ring your doctor if you feel something is truly wrong in this referral/ waiting process.

I believe this is the best advice I can give you.

Best of luck to you.

Thank you.

Did you mean it is usual or unusual?

So you happen to know of the higher INR for APS patients is dangerous for those that turn out not to have it?

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

It would be VERY DANGEROUS for a patient to have an a INR of 4 if they did not have APS in my opinion!

This is why we advise to do nothing without consulting your doctor first.

My antibodies kept going up- ( not that this is the full and only story..) and now they are quite high.

I’m just one story on here- but on the more extreme end. This is a spectrum illness.

Have you not been diagnosed with APS? Sorry, I may not have caught your full story. Are you still under investigation?

KellyInTexas
KellyInTexasAdministrator
in reply to KellyInTexas

I mean, not unusual at all for it to take a while to get it all in place...

I had my first blood come back positive for APS but I read you can get false positives so need to be checked twice 12 weeks apart to confirm. Highly likely I was on Tinzaparin and Warfarin at the time the bloods were taken. APS does seem to make sense though.

I have a self check meter which on my first comparison showed up as being 2.9 2hich was 0.4 higher than the sample taken at the surgery 2.5.

I tested myself again this morning wanting to know if being low was the reason for feeling nausea and fatigue. The reading was 3.3 which would put me closer to 2.9 if my self check meter is off by a standard deviation of 0.4 (not sure if it is untill I run many more side by side tests)

Assuming I have APS off the one positive result I'm trying to keep my INR at the top end of the range 2-3 by reducing vitamin K.

If going over 3 is possibly dangerous I'll stop that immediately and try to keep it at 2.5

Of course I can't continue like that and must expedite seeing a specialist since my GP and Anticoagulation clinic don't seem to understand APS

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

I think I understand your question now.

I have to assume you were not drawn for very long ago.

Have you had the second draw 12 weeks later?

You might find that if you did parallel testing in the lab ( I did for about 2.5 years) you would never see a consistent pattern.

I would bring my coagucheck with me and at the same time do both vein, Venipuncture ( VP) and finger prick ( FP) and chart.

Sometimes they were close, sometimes not.

( FP always higher than VP.)

This is because sometimes the Lupus anticoagulant antibody was also circulating , along side the other two, aCL and B2GP1.

My Hematologist wanted to see this trend, and ordered a chromogranin factor x test each time also.

This is how he figured this out.

I have stopped using the Coaguchek- it just was too unreliable for me personally- but is great for many on here.

You will simply need to trial it longer and see how it works for you.

I believe the answer for you is you must be seen sooner rather than later by a specialist hematologist- and have them answer these question for you. If you do indeed have APS, ( I sent you the guidelines for determining that several days ago) and no bleeding disoalong side it, 3.5 should be ok.

When I reference a n INR, it will always be VP. Also , it will always be as a lay person, urging you to not take my advice on something as serious as an INR without establishing yourself with a true specialist.

I understand these are very uncertain times and it’s fraught with new barriers to ease of access.

I urge you to call UCLH and ask for an appointment with the thrombosis unit.

No I haven't had the second draw but what did you mean by the assumption I wasn't drawn for very long?

On the reasons why the Coagucheck and the regular draw never matched, did the hematologist work it out?

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

I mean , how long ago was your initial first draw? When do you get the second draw to see if you are positive twice in a row?

It can’t really be worked out, the coagucheck is not reliable enough for me.

Also, my INR is now set too high. ( the higher the INR, the more unreliable the Coagucheck becomes.)

Anything over about 4.0 really... I found for me.

Had my first draw about 12 weeks ago

I hoped to find a specialist more local than London by reaching out to anyone near by with APS

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

Liverpool has an excellent NHS- hematologist and Rheumatoligist.

Manchester is equal with Dr Ian Bruce- Rheumatoligist- he will known how to refer you to hematologists.

Not sure where you are.

Hiya.

That's very far from me but London is an hour away with Guys or UCLH.

If there's no one closer I'll see if I can get a referral to London.

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

Good! Glad you are getting a plan together.

So we need both a hematologist and a Rheumatoligist. How about a vascular or cardiologist? I'm guessing that I ask to be referred to one and then they push me about depending on need rather than me asking my GP to refer me to each?

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

I think when you see a true aps specialist, ( quickly if possible) in hematology first preferably, you should ask this question of him or her.

If it’s micro sludging ( micro vascular circulation issues). Which is probably more likely to be the case since your INR is too low- then raising the INR and keeping it there consistently ( far easier said than done) would likely resolve the chest pain.

It’s really just on good measure to “rule out” any structures problems or vegetations that could have cause you and valve damage.

Any chest pain needs to be taken seriously, and explored as to the whys.

I’ve learned with APS the “what it isn’t” is often equally important as the “what it is.”

A higher INR often resolves the “ what it isn’t” who’s is microvascular angina. ( cardiac, abdominal...)

Think of your heart as a tap. The water flowing through as the blood. The tap may be perfectly fine, but as water starts to freeze, ( slushy, not icy, it doesn’t flow well, and the tap may protest a bit.

( a cardiologist gave a friend of mine who has APS this analogy .)

That is a great analogy and you truely are a treasure in this forum :) thank you :)

I'm going to really push for a referral to a specialist. If they drag their heels I'll just suck it up and pay for a few startup consultations.

Wonder if medical insurance is something I should also start looking into.

KellyInTexas
KellyInTexasAdministrator
in reply to gazaeee

( I just corrected the auto corrects above , in my last response , so it will read more sensibly- sorry about that .

I can’t advise on insurance. I’m in the USA so ....😶

Ps- I would say- perhaps worth going private to get the ball rolling.

Increase your exercise- not decrease and drink alot of water- helps to keep blood thin

Ginger thins blood, but, we our reactions to foods and drugs is very individualized, as you no doubt have noticed by reading above. For me, ginger raises my INR the next day. I had to nix ginger ale made with real ginger. ( probably not bad as I then also stepped away from all those empty calories.)

When my INR is that low I feel the same way. There are certain foods that will then you’re blood but does not showing your INR. You can Google it. I know strawberries are one. When I am feeling pretty crummy like that I continue to eat them and it helps. Chewing gum is another one. If you eat a lot of salads that will make your INR lower specially if they’re dark leafy greens like kale. Try to keep your diet consistent. And I agree with everybody else and I and our two or 2.5 I would be miserable. That’s way too thick for me.

Designer16

Up until now I've been following the clinic's advice of eating whatever I usually do for them to make the dose work around that. I was cynical about that since it really depends upon you being 'regular'

True to form my INR 3 months on has not been stable.

I had hoped the Coagucheck would save me but that so far on 2 parallel runs hasn't given the same reading with 0.4 over and 0.2 over respectively.

Now I am going to work on taking the same amount of K each day.

First issue I've run into is the way they are quantified. 1 cup of this, 1 tablespoon of that. Really can lead to very imprecise measurement's. So does anyone know a good site that will tell you how much K is in a given weight of an ingredient (ounces or grams)?

If I was you I would try to find out if I have got 2 positive tests (2!) and which antibodies were positive. In that case with your PE or was it also a DVT, you may have APS. Curious they have given you Warfarin and a rather low INR. Talk to that Doctor who did the tests and the one who put you on anticoagulation for APS (?) Ask for copies of testresults if positive.

If 2 positive tests with 12 weeks between the tests I would look for a Specialist of autoimmun illnesses who can give you correct anticoagulation. That is exstremely important!

If the INR is too low for us we feel bad and get our symptoms back. If you have got high bloodpressure try to get it down.

Exercise is good for the blood. Try to move around as much as you can.

You say you use a CoaguChek and that it gives a higher reading. It is ok if it is only 0,2 - 0,4 over the veintest-results. It is another reagens. With a higher INR the difference is usually greater.

gazaeee
gazaeee
in reply to Lure2

Hi Lure,

The target INR was given when they first switched me over to warfarin post PE but before any blood results came back (they took quite some time)

This whole COVID situation seems to have thrown everything off so my path does not seem to have been managed at all. I had to keep calling the hospital and the doctor surgery to find out my results which only came back around a month ago.

I suppose someone should now arrange a second blood test since its been almost 3 months since they took the first. Would you expect the INR to only be increased on a second positive result?

Lure2
Lure2
in reply to gazaeee

Yes. To get a diagnose of APS you need two positive results taken within a 12 weeks time. Obviously you also had a PE and a DVT (?). Then you should probably have APS.

When you know that you have APS, look for a Specialist who can give you the correct anticoagulation. Ask for copies.

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