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Sticky Blood-Hughes Syndrome Support
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Recurrent miscarriages

Hi my name is Lisa. I am just going through my 4th miscarriage in the last 13 months. I had one positive blood test for lupus anticoagulant antibodies before falling pregnant the last time but the second confirmation test was not done due to the pregnancy. I was told to take low dose aspirin which didn’t prevent the last miscarriage. Has anyone been through similar or know what the treatment options might be? Thanks

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I am so very sorry reading your post. This must be a very painful time for you. If you have had 4 miscarriages, you ought to be seen and treated by a specialist.

If you are in the UK, you can find a list on your right, under Pinned Posts.

The treatment, which is effective,includes Low Molecular Weight Heparin (LMWH) injections, which are safe as it does not cross the placenta.

Please get a referral from your GP to end this very traumatic situation. Thousands of women have been successfully treated for miscarriages and have had healthy babies.

With good wishes,

Ros

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Thanks for your reply Ros. I am in the UK. After my second loss my dr did a blood screen (I am 36 so the investigate after 2 rather than 3). They found I had an under active thyroid and put me on levothyroxine. After the third loss I got referred to a gyne specialist - rather than the recurrent loss clinic. There was a 7 month wait!. Scan was clear but blood test was positive for lupus antibodies. I have however found the NHS a constant battle every step of the way and now being 37 I’m conscience that I don’t have time to waste so am looking for a private clinic to help. X

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London Bridge Hospital - Dr Graham RV Hughes - Hughes Syndrome/APS is named after him.

londonbridgehospital.com/LB...

londonlupuscentre.co.uk/hug...

Just to note: the lupus anticoagulant is not a test for systemic lupus erythematosus, but a complicated clotting test.

I understand there is a waiting list for Prof. Hughes, but you could see others such as Dr David D'Cruz (Head of Lupus Clinic at St Thomas'). Dr Hughes has trained almost all lupus specialists & all work together.

The connection between SLE & Hughes: about 25% of patients with SLE also have APS (I am one) which is why Dr Hughes has researched this syndrome!

This is a very treatable condition via thinning the blood. If the blood is too "sticky" insufficient oxygen gets to parts of the body like the placenta and can lead to miscarriages. Baby aspirin and warfarin are used, butfor pregnancy,Low Molecular Weight Heparin is used, because it doesn't cross the placenta.Thousands of babies have been born healthy as a result.

I hope this is helpful!

With good wishes,

Ros

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That’s really helpful- thank you so much.

Lisa

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On the right hand side of our forum under pinned posts, is a list of recommended Hughes Syndrome/APS specialists, some private, some NHS and some both. It will help you and your GP if you have the right specialist to help with this condition. MaryF

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Thank you. I shall take a look. You are all so clued up about this- I have so much to learn!

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Hey Lisa- you will now be on a quick learning curve with what I do feel will be a favorable outcome for you. ( chances are very high in your favor if this is indeed the problem- which if I understand correctly- it is.)

You will be put on daily injections you self administer subcutaneously into your belly of Fragmin to “ thin your blood” so baby will get all things needed via placenta/ cord to grow properly and healthy! Easy breezy! After the first couple of injections you’ll be a pro and think nothing of it. It will simply be a part of your daily routine.

I’d say... you’ve had great news all in all! ( even though no one wants this- there is a Work around ).

If you google Dr Graham Hughes- patients Day videos- in some he talks about his great success with the pregnancies.

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Thank you. I like your positivity. I’ll certainly take a look at the add Hughes day videos. Thanks

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I disd not develop APS until after my 2 successful pregnancies, but I i did bridge from wearfarin to injected lovanox as I “bridged” from longer action warfarin to the shorter acting lovanox prior to my hip replacemetnt. I was rather iffy about self-injecting: sounds painful, sounds difficult. But no: “easy breezy” is a good description. After my 2nd self-injection I concluded that my pre-concieved notions regarding self-injection were inacccurate. So, if self-injection is in your future, do know that its not as challanging as it sounds.

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We are all going to be excited! Keep us in your new extend family loop here, Lisa. I think you will find us a compassionate and informative group.

We always learn together- and ask our doctors loads of questions and share their expertise ( or lack there of then have our “rants...”) But we are never turned away without a plan. Then we just see if it works! Then we all learn together again. But... we do it TOGETHER!

Doctors learn from this also as the admins are, as what I have come to call ,” the keepers of the academic journals.” It’s fantastic!

I can’t tell you how many publications I have printed off and politely shared with a baffled GP, or worse. Hematologist Or Rheumatologist. I simply explain that there is a forum on line that Dr Hughes contributes to and has a hand , and that the women that administer it, at least the ones out of London, are his patients at the London Bridge Lupus center, and are directly involved in the launch of GHIC.

Then I explain that Lure 2 ( Kersten) single handedly is basically the only Viking in Sweden - the prototype of Scandinavia. ( All the others froze...I’m quite sure!) We are lucky to have an international reach across the Baltic who is so well versed in what I call the ,”gold standard Hughes approach” of patient first thinking.

My doctors really listen to these women. They are absolute Gold, Mary, Lynn, Holly, and Kersten.

I feel they go with me to all my appointments! My GP now asks... what do Lynn and Mary say? ( I am a patient there as well. My doctors sent me there a year ago, in fact.) Did they ask Professor my Question? Or did they attend that seminar- 10 topics? What did Hannah Cohen say? What about the Thyroid UK launch?

Of course it’s just overview general information of course, but in the USA, and in rural Texas we don’t have true APS specialists the way England does. There is no real “ list.”

We do have a few, but it’s not exactly the same.

😂😂😂

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