Sticky Blood-Hughes Syndrome Support
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Discuss with my Haematologist ?

So at last this Wednesday I'm off to see my Haematologist (who doesn't believe in zero negative APS - I have only had one LA positive only). But def have Hughes Prof D'Cruz st Thomas diagnosed.

My INR is still extremely irratic.

Please any info to help at my consultation?

Try Low molecular warfarin injections?

Blood tests - vit D - vit B12 - ferritin - Thyroid- anything else?

I have the twins story from Prof Hughes.

7 Replies

You seem to have everything ready, the injections are Ldw heperin or clexane.

Take your warfrin record with you and tell them the INR level that you feel healthiest at.

Good luck x

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As you have had a positive LA you are NOT sero-negative! Antibodies come and go and so perhaps copy one of Prof Hughes blogs or even his video where he discusses this subject.

You could also print of the study we put on here about "Disappearing Antibodies" and the fact that people can continue to clot when seronegative. If all else fails, either find another Dr who will be more willing to work with you or say to him point blank "If there is no such thing as seronegative Hughes, why are there so many study papers on it or mentioning it"? Id only do that if the appointment has already reached a point of no return and you have got nothing to lose.

Sometimes you just have to show these people that you have done your research too and you are not prepared to be whitewashed with platitudes. Push for a trial of whatever you feel is the best option as a "trial" sends the message it isn't permanent and he can get out of it if need be! Be prepared with your research to back up whatever it is you may want to try. When asking for a FULL thyroid panel remind him that thyroid disease can run with Hughes as can Sjogrens so its good to know if that is an issue. You will need both antibodies and FT3 and FT4. Remind him that low Vit D can also be a problem for people with our disease (take a copy of that study). Also B12 and iron can also be low.

I think you just need to be well prepared, ready to discuss anything on the above subjects and politely stand up for yourself without rubbing him up the wrong way. I always find that passing over a study or whatever with a huge smile whilst saying something like "Well Im sure you have seen this, but I thought as it was relevant Id bring you a copy to save you looking it up", then stick it under his nose! A big grin can hardly be ignored as much as it may be with gritted teeth!!

Good Luck!!


Straight to the point, find a new one that does as they would more than likely be better informed.

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Wendywoo: did you meet with success? I hope so👍


No I'm just told they can't do anything


Do they finally understand you are positive?


I think so lol 💋


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