Hughe's syndrom aka sticky blood - can I ask to be tested

[SofaKitten]

Have had 2 previous very traumatic miscarriages at approx 11 weeks both times, and am now worrying for Britain that it might be because of the above...

(I blame Mumsnet - before I was on here I had never even heard of it!)

Anyway - I have an appointment with my doc when I'm 6 weeks to say I'm pregnant (she didn't want to see me before then), and I want to have the blood test to see if this is the problem.

What's the odds? Can I just take low dose aspirin anyway in the meantime as by the time a blood test has been organised and the results come back likely I'll be past 8 weeks anyway.

Anyone know anything?

Gah! Can't spell! syndrome

Look up the charity "Life Blood". There should be some info on their website. Beverly Hunt is the patron, she is an expert on this condition and pregnancy.

GPs generally don't know very much about this IME.

Thanks

I had inconclusive clotting results. Obstetrician said that he wouldn't do any clotting tests during pregnancy as the blood clotting factors change, so results would not be accurate.

There are many other clotting disorders other than Hughes.

I don't think anyone on here can you give you odds....

what sh77 said.

always best to be tested when not pg as your blood is likely to be thicker during pg anyway.

and ime gp's are crap with this sort of thing. ime aspirin did not work (after 3 mc) without having the tests it's impossible to say if it will help you. there are people who belive aspirin can do more harm than good if you don't have a proven clotting issue.

are you pg again now?

yes am 5 weeks

it's always worth asking your gp, but they may not be able to advise. they may refer you to a specialist.

fingers crossed that things work out well for you this time.

I know I'm worrying about anything I possibly can - but 2 miscarriages in 2 pregnancies at about the same times seems a bit suspicious to me that's all.

After the last miscarriage (Jan) I asked the doctor and she was really dismissive of my worries "these things happen", "lots of women have a couple of miscarriages before having a successful pregnancy"...

So I worry.

hi, i advise posting your message on the miscarriage board. I think other posters are right to say that the fact you're already pregnant makes it difficult to get accurate results. speaking completely personally, and without any medical qualification, if i were you (i've had four miscarriages so i know how awful it is) personally i'd take a 75mg dose of aspirin every day just in case, but perhaps not until seven or eight weeks.
i am not aware of any compelling evidence that it is harmful, though i do recall some suggestion that it might have a negative impact on implantation, so if you wait until after that i imagine it would be fine. Def worth talking to your doctor but they are unlikely to have the specialist knowledge to really know what to advise.

Did you take aspirin sotough? Is so - did you then have a successfull pregnancy? Hope you don't mind me asking.

sofa i can empathise with you 100%. i had 4 recurrent miscarriages, 3 of which where near enough identical. i was told there was probably nothing to worry about and felt completely fobbed off.

for the 3rd miscarriage i took the low dose aspirin without medical advise, and i probably would of regardless of the evidence that it might interfere with implantation.

it sounds horrid to say, but at that point i felt like i was just going through the motions and even if i mc'd again, at least i would be able to get the tests done.

it didn't help in that pg, but i took it again this time, but at a higher dose, alongside a higher dose folic acid and daily claxane injections. i'm currently 31 wks and all appears to be going well.

i don't think taking the aspirin harmed that pregnancy, it ended exactly the same as the previous and again for the 4th mc.

are you being offered any extra support in this pg?

i should add that i never had a clear positive test result for any clotting issue. but i had a really lovely consultant who felt the same as me, trying something was better than nothing. although i should add i had to pay to find him, the nhs one i was seeing was crap tbh.

Hi sofakitten,

I have hughes syndrome and it is apparently very easy to diagnose with blood tests - however, as the others have said, I don't think they can do so reliably when you are already pregnant.

I am 27 weeks pg now and on aspirin and clexane, but as I said I knew I had Hughes (though not because of miscarriages, with me because of mini-strokes) so my pregnancy was carefully planned and I was on anticoags whilst ttc (tinzaparin rather than warfarin which I used to manage the condition before but which is thought to be dangerous to the developing foetus).

I would ask for a referral to the lupus pregnancy unit at St Thomas' where Beverly Hunt (mentioned above) works - that's what I did and so far my pregnancy is going well. (I don't have lupus btw, it can be confusing - the hughes syndrome website will explain).

As you are already pregnant and they may not be able to diagnose you I don't know what they would do, but they may be able to advise and it would be good to have the ocntact with them for the future.

I hope all goes well for you this time

Not been offered any additional support yet - but haven't seen the doctor yet! She said after the last miscarriage that 2 is within normal range and if I got pregnant again to see her after 6 weeks - didn't want to see me before then.
Also I should mention that time is ticking and I'm 37 so can't mess around really. It takes me about 10 months to get pregnant after miscarriage, so each one takes about a year...

Re Hughes - I also get migraines, blotchy skin, and end of extremety tingling regularly..

I just wanted to be informed for when I go to speak to her this week.

Thanks for the advice people. I'll ask her about taking aspirin anyway...

Migraines, blotchy skin and tingling are all symptoms I got too (along with mini-strokes) before a neurologist diagnosed me. I would try to get a referral to St Thomas'. I'm 39 so know what you mean about time ticking . We started ttc last September, had an early miscarriage in Feb (likely not because of the Hughes though) and successfully pg again now.
Good luck sofakitten, Beverly Hunt is the expert so if you can get a referral to her / her team you'll be in the best hands xx

Thanks Dancing Cat - I feel I can go in to talk to her fairly confidently now. Don't know what it is about doctors but I change from a confident assertive woman into a little "yes miss" doormat!