Heparin for Hughes Syndrome

[StrawbRhi]

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 . 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?

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?

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.

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 APS....so I would seek further advice and although injecting is a PITA ( not literally) there are ways to reduce pain and to make more comfortable.

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

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

Hi everyone,

I know this thread was posted this a veeery long time ago but I'm wondering if you're still active. How did your pregnancy go? I really hope everything went well for you 🙏🏼

I have recently been diagnosed with APS after recurrent IVF miscarriages (well I've had one blood test and they've said we can use inhixa on our next IVF round rather than wait for 3 months for the 2nd test) and am trying to find some information on people's experiences. Did you find APS difficult to manage during pregnancy? What was your medication protocol? We have always miscarried at 5 weeks and I'm beginning to think it won't happen for us 😔 we're also awaiting chromosome results.

Any advice would be so appreciated!

Thank you xx

Hi VioletCookie

Its been long enough that I'd actually forgotten I'd posted this! I didnt want to leave you hanging though. I carried that pregnancy to term and now have a rambunctious 5.5 year old daughter and went on to have a son 2 years later with no complications. I took aspirin during both pregnancies but refused heparin injections. Docs were not happy with me for that but I stood by my choice.

I never did find out for certain if I have APS, the doctors weren't interested in referring me for testing after pregnancy and I'm only now getting looked at again in a new GP surgery.

I had multiple miscarriages at 5-7 weeks and the aspirin seemed to stop it in its tracks. 3 children is quite enough for me now, so I havent tested the theory any further than those 2 pregnancies!

I wish you all the best and fingers crossed for the the next IVF round. Hopefully this will bump the thread and someone else more knowledgeable will come along soon!

Thank you so much for replying! You've made me feel better/more hopeful just for reading this. I'm so sorry for your losses but pleased it worked out for you! We've been feeling so lost, fingers crossed for a better 2023 🤞🏼