My grandad had 8 heart attacks and my mum died aged 43 from her 2nd PE.I am on warfarin for 2 dvts in calf and A+ im scared

I am worried as my INR won't regulate am 3.5 and am always tired and recently had memory loss. Should I get tested for factor v can I help myself. I'm 42 and worried I will end up like my mum and if it could be passed to my daughter or sons. Thankyou.

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5 Replies

  • Hi,

    Are you wondering how to go gluten free or are you worried that you have a gluten sensitivity?

    A INR if 3.5 isn't great but looking on the bright side, it could be worse...

    Intermittent consumption of alcohol will push your INR up; and most antibiotics will make the readings go haywire. There are probably other reasons too - but I'm a coeliac, not a doctor!

    You may need to give us some more info to enable people here to support you.

  • There was a discussion around coeliac disease and Factor v Leiden a little while ago. I don't know if it will be of any help.

  • of course there is also a link between Celiac and Hughes Syndrome as this condition often runs as a trio with Hashimotos and Sjogrens. we all know the link with Hashi. prof Hughes always advises his Hughes Patients to stop eating Gluten regardless of weather they are Celiac.

    I have APS (Hughes Syndrome) and have had a PE and a stroke and have been dx with Non Celiac Gluten Intolerant. They believe I may well be Celiac but I had already given up Gluten before testing.

    There are quite a few people who have APS and Factor V.

    Do you know if any of your family had miscarriages or suffered from migraines? Itwould be interesting to know if APS was in the mix too. Have you been tested for it do you know?

    Prof Hughes likes his patients to have an INR of at least 3 - 4 and most APS patients find it really hard to regulate their INR including myself. I am on daily Fragmin now.

    I would most definately recommend a GF diet. I would also recommend that you find yourself a specialist with Factor V knowledge as we do with APS. Most haematologists dont keep the INR high enough so its important to be under a clinic with a specialist who treats people with that disease daily. If you dont have a dx you need to get one. St Thomas Hospital would be a good start if you are in the south.

    Perhaps look on the Hughes Syndrome HealthUnlocked site for some info as they have many people with Factor V.

    Good luck and do let us know how you get on.

  • Here is a link to a recent thread about this very subject on the APS site.

  • I think with your history and family history it would be sensible to get tested for various clotting issues including but not restricted to APLS and FVL. You need to know what you are dealing with and find a doctor who knows what they are doing.

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