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Sticky Blood-Hughes Syndrome Support
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Folic Acid Deficiency

I have been on Warfarin for 8 years, range 3-4. I have had two Retinal Vein Occlusions.

The first before treatment, and the second unfortunately when on Warfarin 3-4.

Over the last two years I have experienced more fatigue and weakness, gut problems,

palpitations, loss of appetite and considerable weight loss. The gut problem was put down

to diverticulitis, and the other symptoms I assumed with APS/Sjogrens Syndrome. However I have just had a diagnosis of Folic Acid Deficiency, and all the above

conditions are likely to be the FA deficiency, not the Sjogrens etc. At present my INR

has dropped to 2.6, and no call from the Warfarin Clinic, and I have never had the option

to self administer a Heparin dose. Have most of you seen a haemotologist? I see an

Immunologist with a special interest in AutomImmune conditions. I have upped my dose myself by an extra 1/2 mg.. Would appreciate some advice I would really like to switch to

Heparin, as the INR is so unstable , with the vit. K foods, which I should now eat because

of the FA deficiency. Help?


2 Replies

Hi, It is usually the Rheumatologists who are specialized in Autoimmun illnesses like Sjögren (as you say you have) and Hughes Syndrome etc but also sometimes the Hematologists know a lot.

I think you should tell the Warfarin Clinic tomorrow morning that you have raised your Warfarin dose with 1/2 mg.

Also ask your Specialist to let you have a LMW Heparin-shot when your INR goes under an INR of 3.0 as a complement to your Warfarin-dose.

Best wishes from Kerstin in Stockholm

1 like

I forgot also; you can eat as much you like of vit K rich vegetables as long as you stick to the same amount of them every day! Constanty is the key with Warfarin.



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