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Heparin for Hughes Syndrome

(6 Posts)
StrawbRhi Fri 11-Nov-16 16:05:09

Hello all,
I'm currently 9+3w and just found out that I may have Hughes Syndrome after having tests done for 4 previous miscarriages. Already have PCOS, so this just takes the biscuit.

Unfortunately the consultants forgot to actually tell me and recall me for more bloods to confirm this so now they have no idea if I do or not hmm. Asprin and heparin have been recommended but ONLY if I have the syndrome. Which obviously we can't now test for. I've been taking baby asprin since 7dpo anyway off my own back but they say they can only issue the heparin if I specifically ask for it. I felt kind of put on the spot and said I'd go away to research it before making a descision.

All the info online seems to be confusing! Some say it's vital, others say it's not helpful if you don't have the syndrome. I have an issue with blood tests and injections as my blood pressure drops suddenly and I faint so I'm reluctant to sign up for daily injections if it's not necessary! I have one DD who is nearly 6, she was my first pregnancy and had no problems with her which throws a spanner into the diagnosis works.

Does anyone have any experience with this? Should I opt in? Just how essential is heparin if I haven't been formally diagnosed? Are there any risks?

Teakind Fri 11-Nov-16 17:54:56

Hi, I don't know much about Hughes but I know lots of people (including me) who have IVF are put on both of them up until 12 weeks.

I was tested for it as my auntie has it and there is lupus in the family. Have you had a look on the Hughes website? I seem to remember is being quite helpful. Can they not test for it in pregnancy?

Dozer Fri 11-Nov-16 18:01:17

Did the tests you had suggest you have the syndrome?

I had heparin following recurrent mc and didn't have other health issues, the doctor said the heparin didn't cross the placenta to the baby. Was fine, but I am OK with injections.

In your shoes if I could afford it I'd seek a private opinion from a mc specialist, if couldn't afford it I'd go for the heparin.

Best wishes for your pregnancy.

chestnut20 Sat 12-Nov-16 08:06:50

Hi I have Hughes syndrome/ Antiphospholipid Syndrome but only a mild form (only positive for one of the anticardolipin antibodies) but I still have to take 1 baby aspirin daily and have had to inject heparin for pregnancy, flying and if been immobile for long time ie leg fracture etc. The best advice I can give is if getting conflicting advice from Consultants ( I had lots of conflicting advice even though I had been fully diagnosed as it is not a well known medical condition in the medicsl community) to contact the Hughes Syndrome Foundation. On their website there is a very well informed and monitored chat forum and also a list of consultants by area, that have an interest in APS, who you could contact for advice. Even if had not been diagnosed as I am older and ttc there is evidence that I would be put on aspirin and heparin if pregnant and not diagnosed with I would seek further advice and although injecting is a PITA ( not literallygrin) there are ways to reduce pain and to make more comfortable.

chestnut20 Sat 12-Nov-16 08:14:13

By the way my GP "forgot" to tell me the 1st test was positive and found this out on me chasing results for weeksangry so had to redo both, got the result (luckily) about 2 weeks before finding out I was pregnant!

TwoDogs9 Sat 12-Nov-16 08:35:36

Hi, I think your GP has been rather remiss! Do you need more than one blood test to diagnose Hughes Syndrome? I definitely think you should get a second opinion. I take aspirin and Clexane following four miscarriages and a diagnosis of Prothrombin Gene Mutation. As someone above said, sometimes doctors will prescribe aspirin and heparin following mc with no diagnosis, so maybe it would be safer for you to take them. Good luck, I hope it all works out for you smile

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