Not sure whether I should be here but... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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

parkysam profile image
4 Replies

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

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parkysam
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4 Replies
MaryF profile image
MaryFAdministrator

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: youtube.com/watch?v=V3J8BLk...

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

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

MaryF

parkysam profile image
parkysam in reply to MaryF

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

Manofmendip profile image
Manofmendip

Hello Sam and welcome.

Dave

HellyD profile image
HellyD

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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