Sticky Blood-Hughes Syndrome Support


hi everyone: i hadnt posted in a while, but two days before New Years I started bleeding from my nose, mouth and urinating blood as well. I ended up having a fillin dr. tell me to stay off the aspirin (i have von willebrands). I bled for 6 days, then went to my dr. who also found according to a sonogram that I have a nodule and a cyst on my thyroid. I have to see my cardiologist this week and my rheum. and neuro next month and endo. in six months. All this just seems so confusing because its hard to balance bleeding and clotting.

9 Replies

Hello, I am so very sorry you are having such an awful time. I hope you have lots of people around you to help with this and I hope the team copy info between each other, keep posting and letting us know how you are. Mary F x


Thank you Mary, I appreciate all the info and support from my friends at Hughes. Here in the US they dont seem to have as much on it as over where you are. I see a rheum and neuro and they call it antiphospholipid syndrome and just basically watch it through my symptoms. My blood is not monitored weekly but every few months. I have an unsupportive husband but my children and friends are loving and great. Thanks to you.


I hope the article was of some use, let me know if you wish me to look for more in the US, to provide some reference points for your team x


This is a good contact point for you


Thinking of you sweetie take care keep strong x


hi love- sorry to hear what you are going thru ,arnt you close to ny city there is some good doc in the city . how stable has your inr been. maybe you can try to be more aggresive armed with some literature and maybe get thier attention that way , i had to do this with my neuro. what do you think ???? -jet


Just read your post, big hugs, hope everything gets better soon.

Sara xx



There is the in the USA. A lady called Tina is the President and they publish a very useful, quarterly newsletter with intersting scholarly and anecdotal articles.

Best wishes.



Hi hon,

So sorry to hear you having such an awful time, I hope all the docs get it together and work out the right way to deal and help you.

I do hope everything settles down soon and you feel better.

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


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