Sticky Blood-Hughes Syndrome Support
8,354 members8,528 posts

I must be unusual

My INR ARE EITHER 1.1 IR 4.3 NEVER A GOOD READING. I told the nurse today that I can always tell when my numbers are low, my teeth ache and I feel drained. I also end up sick when I go from low to high back to low. Don't understand this. I was told I don't feel anything. Umm yes I do idiot.

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I feel it when my INR is really high - light headed, dizzy, short of breath. Sometimes the high INR has increased blood loss and led to low iron, which then gives similar symptoms constantly.

What anti-coagulent do they have you on and for how long? Warfarin is tricky to stabilize and interacts with a lot of there stuff - foods, other meds, if you have a cold or stomach upset...

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Hi and welcome to our APS-site,

When were you diagnosed with APS and what therapeutic range has your APS-Specialist put you on?

Were are you from? I am myself from Sweden.

Kerstin

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Aww bless you Kerstin. If you click on the downward arrow next to the like box you can delete it

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Bless you for telling me!

Kerstin

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Hello and welcome

May I ask you two questions please:

where are you from; and

do you have a diagnosis of APS/Hughes Syndrome.

This will help us and others to help you.

Dave

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As this is your first post on here, can you please let me know where you are located and who is looking after your care please. Can you also confirm if you have a diagnosis of Hughes Syndrome/APS? MaryF

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Wow, great responses here. Okay I'm from Iowa and I was diagnosed with PE in September when a blood clot was found by accident on my right lung. U had to begin shots of Lovenex for 10 days and then have been on Warfram. My family doctor is trying to take care of me. The blood work is every week. Ugh crazy.

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So you have a diagnosis of Hughes Syndrome/APS? Hope you feel better soon. You do have to watch your diet with Warfarin, but I expect you ahve been told that. MaryF

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as a matter of fact the only thing I was told is not to eat greens. Is there more I need to know?

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and do you have Hughes Syndrome/APS? It is not about not eating greens it is about eating the same amount every day, Also to be aware that some drugs and also herbal things like cranberry can greatly alter your INR, so here is a list plus foods etc. One of our members has written a very good book, which you could ask the charity about, as in living with being on Warfarin, and the ideal diet. anticoagulationeurope.org/f...

MaryF

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and once you answer my initial question, I can then help you further as we share some of the same diseases. MaryF

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Leafy greens, but I look up every thug and write it down. I take warfarin for APS

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1. You should be checked for APS by an APS specialist. (If you need help finding a specialist, I may be able to help.)

2. My experience was that when my doctor had trouble stabilizing my INR, I was eventually put on Lovenox. I suggest that you ask your doctor about Lovenox.

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What is APS? Where do I find a doctor that speacializes this? I don't like the Lovenox, I felt better but the shots hurt.

I live in Iowa so where should I go to find a specialist to help me?

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APS Action: apsaction.com/

MaryF

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Okay I did answer your 1st question MaRy. No I haven't been diagnosed with Hughes Syndrome. I looked up in the internet a question on can blood thinners make you feel different and something about my INR levels.

I was diagnosed in September by accident with a blood clot in my lung. They think it was in my leg and traveled to my lung. Now I'm on Warfram. My nurse practitioner is treating me. She can't seem to get it leveled. I love in Muscatine, Iowa in the US.

I think I got all the questions answered. Sorry if I missed any.

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Hi there, here are the tests you need to do: hughes-syndrome.org/about-h... Hughes Syndrome/APS, Antiphospholipid Syndrome or Sticky Blood is a sort of nasty cousin of Lupus! When you do the tests do them where the samples will not hang around as they are time sensitive the samples taken. This charity has specialists: apsaction.com/ Other than that is is members on here giving you more local knowledge. I am really glad you are being treated, that is a good start. MaryF

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Wow, great information Mary! Thank you, I'll ask my Doctor to test they. I only knew of an ANA test. I haven't felt well for some time now. I get sick all the time and ache to no ends.

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You need to be aware that Fibro is often an under active Thyroid and or Sjogrens and often also low vitamin D, make sure you test all of those. plus your B12 and Iron also.. MaryF

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Hi Sickallthetime

Did they give you a reason for why you had the clot in your leg (DVT) which travelled to your lung and gave you a PE? Perhaps if you can answer that we can help a bit more.

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I drove 2000 miles for a funeral stopping along the way several times, but apparently I was suppose to stop every hour. They caught the blood clot because I had a horrible pain in my lower adbominal and they thought I had diverticulitis. After a c.f. scan they found an infection in the outside of my intestines, a swollen lymp node by the colon and the blood clot in my lung. They have me shots of Lovenex and sent me home with 3 different kinds of antibiotics.

You say Lupus Mary. I was diagnosed with Llupus in 2001. Then after 6 and a half years of taking meds I was suddenly cured. I don't think so. I had an ANA test done recently and it came back neg.

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What anticoagulation medication are you on? I've been on Warfarin since 2006. I had an incredibly hard time regulating my INR to have it within the target range. It literally took me years (sorry). At first I seemed to have better luck with name brand Coumadin vs the generic. I switched to the generic last year for financial reasons and have been doing ok with that. I know it's difficult but be patient.

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Three suggestions.

First, read up on autoimmunity in general ( I profited from reading "The Autoimmune Connection") and APS specifically ( Kate Thackery's " Sticky Blood Explained." )

Second: keeep a lost of symptoms and general activities and foods eaten in a notebook by date, or in one of those notebook like calendar/ appointment books.

Three; go see an APS experienced doctor from the APS Action web site.

If option 3 isn't doable for you, then educating yourself becomes paramount. The English major housewife from West Virginia finds it disconcerting to offer my unqualified opinion which may be in opposition to a real live medical professional, but . . . To my understanding., lupus is a life long condition. Active symptom flairs may come and go, the blood work can veer from positive to negative, but one is never forever cured. An environmental triggers can rouse the nasty symptoms from hibernation, which is why keeping an activity and diet log can help identify and avoid flairs. ( for me and my sister, a food trigger for lupus like symptoms is alfalfa sprouts. For years we added them to salads because we thought they were healthy! well, for most people, they are. but not us!)

good luck!

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I know how you feel.i am wrong down every gram of vitamin k I eat.Tired of getting checked every week. I take 10 mugs a day and 7.5 on Monday. How much do you take?

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Hi Ormiston,

I have not seen you on this site before so I do not know where you live but the amount of Warfarin is different from person to person and is not so important as the INR (how thick your blood is). Hope you have got an APS-Specialist who can give you the right treatment. Very very important!!

What therapeutic level has he/she put you on regarding your INR? My is an INR of 3.2 - 3.8. Is it possible for you to selftest?

Best wishes from Kerstin in Stockholm

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