Visited Nephrologist yesterday who has offered me an iron infusion due to ferritin level of 4......anemia !?
Is this because I have changed my diet because of warfarin or due to the heavy bleeding after a failed ablation....
Scared that I'm not in control of my body anymore.... My last inr was 4.2
Yes eating all of the above...but still low in ferritin
I'm just more aware of it and anticoagulation clinic told me to only have high 3 times a week...
Will take your advice though thank you
Ate liver and spinach last night my son even brought me a Guinness to have today....lol
Some people with Hughes Syndrome/APS do develop low iron, but your problem will have been made very much worse by the heavy bleeding, thank heavens they are on the case. I presume they will start this as soon as possible, and then will monitor you. Many on here have had iron infusions. Best of luck. I have enclosed the relative page for you off the HSF charity website: hughes-syndrome.org/about-h...
MaryF
Thank you Mary I am booked in for next week.....
Nope.....
Seem to be seeing more and more references to low ferratin levels amongst those with Hughes/APS- and not just the ladies.
Iron supplements tried in my case but caused other issues so looking like options are narrowing towards iron infusions. Sadly Guinness isn't that rich in iron.
Best of luck
Yes read up an the lack of iron in Guinness yesterday......more iron in a single egg apparently....
It is a bit yuk anyway so only managed a sip lol
Having my first iron infusion next week so until then it's spinach, liver etc...back to basics all the while wondering about the inr levels.....
Thanks Tim with this happening to the men as well it's obviously not just due to bleeding issues and more of a symptom of APS?!
My iron levels were low from age 4 up to age 49. Turns out, I have celiac and my intestines were too inflamed to absorb the iron I was eating. Since going gluten-free, my anemia resolved and I've had more on the go hiking energy at age 60 then I had at age 20.
Yes Gina me too as a child I was anemic too! Just reading ur post triggered my memory! How r you doing Gina? I send hugs and prayers that ur doing well! I'm glad u go hiking! If I had my leg I'd be back in the trees!!! I miss the forest and the woods and my 3 mile walks that cleared my brain fog! My memory getting sooooooo bad it's so distressing! Keep in touch!
Is it common to need an increase in Coumadin ( Warfarin) during an APS " Flare?"
Is a diet low in Vitamin K needed when on aspirin only or does this just affect those on warfarin?
Swelling/lumps in left side of chest/ribcage....
Hughes Syndrome test is elevated but want to stop warfarin after 16 years of being on it
I started Warfarin in March and live in New York. I don't love the testing and diet restrictions. What are the generic alternatives?
