Sticky Blood-Hughes Syndrome Support
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Hi all, I had an aortic valve replacement some 10 years ago and I've been on phenprogamma 3 (German equivalent to Warfarin) and always ok. I self test at home with Coaguchek and again always ok with an annual check up at my specialist, scan etc.

Just recently I've been getting back headaches and wondered if anyone thought it related or not. I've had them on and off for about 3 weeks now, I guess I should see my Doctor.

Any thoughts please?

7 Replies

Yes as you already know, you should make an appointment to see your Doctor and be examined properly. hope you feel better soon


Hi Harrio,

I have Pulmonary Hypertension and leaking heartvalves but as I take Warfarin and selftest since more than 3 years every second day, I can keep my INR at a steady level and within my therapeutic range, an INR of 3.2 - 3.8. I double-cheque with my hospital every 2 - 3 month in the vein to know that the INR between the vein- and the finger-tests always show the same difference.

I read on your posts 3 years ago that you also selftest in Germany since several years.

I hope your Specialist has put you on an INR high enough to avoid clots. As you have selftested for such a long time you know that the Constancy in what you eat and drink is important of course.

I also wonder if some other symptoms from APS have shown up not only headache. Do you have dizziness, balanceproblems, vertigo or sight-problems also?

Headache can be caused by other things also. Cheques your B12, Ferritin, D-vit. TSH (included T3 and T4) Also cheque your Bloodpressure. I guess you have Contact with a Cardiolog about your heart.

Best wishes from Kerstin in Stockholm


You are clearly used to managing your condition, and any new symptom like this should be investigated and reported if it is making you unwell. Let us know how you get on with your GP/Consultant. I hope they can sort this out for you.

I notice Kerstin has given you some clear detailed and useful advice. MaryF


Hi harrio.

Do you have a diagnosis of APS/Hughes Syndrome?



HI there, could you confirm please if you have a diagnosis of Hughes Syndrome/APS. Thank you. MaryF


Thanks all for your helpful comments, not sure about Hughes or APS. I was diagnosed with a leaky Aortic valve in Oct 2004 and had a metal replacement valve was fitted. So of course I have take a blood thinner which I do daily and as I've said, self test.

I also appreciate your thoughts Kerstin. My INR level should be between 3-4, but last week was at its highest of 4.7, so of course I reduced my meds, last night it was 3.6. I do try and keep my diet consistent and up til now my levels have always been within a point or two. I also check my blood pressure myself and that's always around 117/58 ish, so pretty good I guess.

I'm seeing my Doctor tomorrow morning, so I'll let you all know what he diagnoses.

Thank you everyone


This is a forum specifically for Hughes Syndrome/APS - sticky blood, you could get your doctor to run these tests for you, but it is better to take the forms to the hospital as the samples taken are a bit time sensitive:

May as well rule it out, or for that matter in.



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