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Hughes Syndrome APS Forum

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Aps and pregnancy

Chellebean profile image
6 Replies

Hey I'm new to this I have Hughes and have suffered 9 miscarriages well here I am again I'm currently 7 wks and have never been so scared I went Dr today and as aps doesn't seem to affect me when I'm not pregnant so I basically begged him to give me a blood test today after I had a scan at 5wks 5 days and was told the hospital I was at don't so scans for reassurance I was so mad the people treat me like I wasent meant to be there any way Dr gave me blood test get results next wk but then I again asked about the injections and asprin as I've had these before (still miscarried ) so he said ah yes maybe you should take asprin but I honestly don't know what to do for the best no one I've seen seems to want to help I've been told to wait till next scan in 6 days but that's a long time to wait when your worried to death I would just like some advice and to hear some positive stories sorry if this is rambling x

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Chellebean
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MaryF profile image
MaryFAdministrator

Hi there, where are you located? If in the UK, you need to take somebody very firm with you, as your advocate to the doctor's surgery as soon as you can, and insist on a very very urgent appointment to the nearest team in your area off this list that can help you: hughes-syndrome.org/self-he...

Your advocate needs to be your most articulate and clued up, relative, neighbour, colleague or friend.

If not in the UK, I/we will still endeavour to help you....

As well as the Hughes Syndrome/APS tests, your vitamin D, B12 and iron need checking as does your thyroid function, some even need progesterone added in. Basically you need the right team in order to help guide your GP and yourself.

MaryF

Maybells profile image
Maybells

I'm from the UK and considered to have transient aps in pregnancy ( which is a load of rubbish and an entirely different battle). Following five miscarriages and a pre-term birth, I was placed on aspirin and heparin injections for my last pregnancy. They worked. For this pregnancy (I'm 33 weeks along), my levels rose marginally and have used heparin alone. As a matter of course, if they have identified you as having aps, you should be given the aspirin and heparin, referred to a haematologist and obstetrician, and looked after properly from the very beginning. I really sympathise with you and would advise printing off as much relevant info from the Hughes site as you can, take to you doctor and have someone with you to fight your corner, as he's essentially acting as a gatekeeper to the care you should be receiving. If necessary, could you request a different doctor?

MelissaHedden profile image
MelissaHedden

I've had 10 miscarriages over the years and luckily after my last two St. Mary's recurrent miscarriage clinic diagnosed me with APS. I have a, nearly 24 year old, a 12 month year old and am currently 6 weeks pregnant. My scan is in 4 days time and I feel so much more relaxed.

With my APS, I was to alway take low dose aspirin but, Heprin as soon as I have a positive test. As Mary F has said, I'm using progesterone as well.

You need to be under a specialist if your Dr isn't able to help.

Lettie999 profile image
Lettie999

I have no meaningful advice as my APS is mild but I just wanted to wish you all the best. I'm sorry you have been made to feel bad by health staff ( I suspect most of us on here have a one time or another ), you have every right to demand reassurance and I hope you get it.

Good luck to you and your baby xxx

Chellebean profile image
Chellebean in reply to Lettie999

Thank you x

Chellebean profile image
Chellebean

Thanks ladies I've had my blood result back and it would appear at the moment my bloods have ALL come back normal, I am in the UK and have appointment Tuesday for early pregnancy scan and I can't wait I'm hoping with the bloods been normal I maybe on track to having a healthy baby ☺fingers crossed and thanks for the great advice xxx

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