Sticky Blood-Hughes Syndrome Support

Not sure whether I should be here but think i need to be checked out x

Hi everyone,

i havent had a diagnosis but i am going to see my doctor next week as i think i may need to be tested for this condition.

I have had 4 miscarriages and then lost our son Thomas when we were 5 days overdue, he was stillborn in 2006. I remember having lots of blood tests and then having to have another one a second time, but the sample got lost or something so i never got the result. i remember when i had it done (before it got lost) the consultant saying the chances were that the next result was likely to be normal.

Anyway i saw this charity come up on facebook and clicked to see what it was, and when i saw some of the symptoms of Hughes i felt like something really clicked. recurrent miscarriage, stillbirth. my dad died from an autoimmine disease too and i understand there is a hereditary link.

Do you think this blood test i had and then had to have repeated was for Hughes? i know i never got the second result as it was lost but if i had to have it a second time, would the first one have been positive? i know this is clutching at straws from over 10 years ago.

im not sure if i should go and see the doctor, i have since had 2 boys (i was given aspirin because of my stillbirth and they were both born safely) so dont want to have any more children, but i do want to know if i have increased risks of things like stroke and blood clots.

Im sorry if this post if a bit random, i know i dont really 'belong' but i do wonder if i should go and see my doctor.

thank you for reading,

sam x

5 Replies
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Hi there you have landed in the right place, and welcome, sorry to hear about the very familiar story you tell. Here are the blood tests to do: hughes-syndrome.org/about-h...

Please do them at the hospital as the samples taken are time sensitive, so not good to be left lying around for collection:

Here also is a flim:

and symptoms, plus a list of recommended specialists in the UK: hughes-syndrome.org/about-h...

hughes-syndrome.org/self-he...

MaryF

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Thank you Mary, is really familiar? that is so very sad. i will watch and read those, thank you x

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Hello Sam and welcome.

Dave

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Hi Sam,

It must be heartbreaking going through all of that and then still not having an answer. I believe they sometimes call it 'sticky blood', which I have heard when going through IVF.

I had a friend go through a similar experience and after she lost her son, they tested and she had 'sticky blood', she now has a beautiful 1 year old girl.

I would definitely get tested, if only for some peace of mind and closure to the past.

Helly x

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Hi and Welcome. Im so very sorry for your loss. Is there any chance you can get your old records and ask for a copy of the blood tests that you had done the first time round. That way at least you will know what you tested positive for then.

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