‘Sticky blood’

[hifer]

Hey lovelies,

Hope you’re all doing well on your journeys. Has anyone tested positive for sticky blood and if so what were you prescribed for your next cycle and did it work please?

For context, I have had 2 miscarriages and had my first ‘sticky blood’ positive blood test results today from a test I had done in July (took them ages to get the results to me!) . Not even sure what it’s properly called?? As it’s not uncommon to have a false positive with this I had another blood test today for the same thing to double check. Obviously I would like to get this sorted before my next transfer.

Any experience of the above would be appreciated. Thank you 🙏 as always wonderful peeps.

Xx

[Cinderella5]

Hey lovely! How are you doing? I'm not sure if it depends on what "type" of sticky blood you have but I usually start on aspirin 75 I prep for transfer but went onto clexane injections. Sorry to hear that you have discovered this after your losses.😥 Hopefully this is a huge step forward for future though.xxx

[hifer in reply to Cinderella5]

Hey hun. I’m good, how are you? Any news on your clinic? Oh god there is a ‘type’ of sticky blood??! Why is nothing ever easy?! They are not sure I def have it which is why I had a second test today. I’ve always had aspirin but got a bit freaked out when the consultant doing my MVA in June said that she wasn’t convinced aspirin actually does work for this purpose during IVF. Of course no consultants ever agree with each other which is tremendously helpful for us mere mortals trying to keep up! Ok interesting to know about clexane. If I’m positive again then I’ll at least know what they might be chucking my way 😉 Hope you’re on you way very soon 🤞xx

[Cinderella5 in reply to hifer]

I'm not too bad thanks! There are a few things APS/Hughes syndrome leiden factor V or lupus....few other things too. The good news is they can all be sorted with injections of clexane. I hopefully don't have long to go for next transfer.....!!🤞🏻xxx

[hifer in reply to Cinderella5]

Ahhh I didn’t realise they all come under the sticky blood umbrella. I thought they were kind of separate. I don’t find the info that you can find online about this, particularly helpful. Explains why I had 5 vials of blood taken today! Hopefully it will become clear after the next blood test results. Thanks hun. Keeping everything crossed for you 🤞xx

[Cinderella5 in reply to hifer]

No worries! Mine isnt a hugely significant one but it's in there as a risk. Keep us posted! Thank you, had to postpone from end of July to Aug but soooooo looking forward to that sun!!😁xxx

[Hidden]

Hey! Hope you are doing ok, and hope it feels good to be doing something proactive at least.

I ended up having 7 different tests done for repeat MC and I came back with three positives.. Lupus anticoagulant, anticardiolipin antibodies and Beta 2 glycoprotein. I literally have no idea what any of that means (!) except that I am at risk of blood clots after surgery, during long haul flights (which I do all the time with work!) and essentially one of these I believe can cause MC (at least one maybe 3 is 3x as bad.. who knows!)

Anyway from then I was put on basically the equivalent of Warfarin injections once a day from ET and advised to take aspirin from BFP but not before

Since then I have had another MC but it was so early I think that must have been chromosomal as it was only something like 5 1/2 weeks/6 weeks. (is that terrible I can't remember? It was number 4 so its all a bit of a blur!) Anyway I am optimistic next round if I do get my BFP it will be a sticky one.

When do you think you will start again? xx

[hifer in reply to Hidden]

Thanks so much for all the info. I’m so pleased it isn’t just me that’s confused! I don’t feel like I’ve had a lot of info about it so far from the hospital. I know my last miscarriage was chromosomal because we had the tissue tested but I want to cover all bases.

Oh right you were put on warfarin? Interesting. By your fertility clinic? Well done for being positive for the next round. Got to have hope.

I’m starting my third and final egg collection at the start of my next cycle (probs early August). So just want to be prepared for my next FET when that happens.

Xz

[Cinderella5 in reply to hifer]

I had the glycoprotein one & MTHFR. I'm really sorry to hear that your loss was chromosomal. Gosh it's so bloody hard, with a reason or no reason.....there is no good news losing a baby!😥 Thinking of you!!🤗😘xxx

[hifer in reply to Cinderella5]

Ah thanks hun. I actually felt a bit relieved if I’m honest. I was beginning to wonder if I might just not be able to carry past 7 weeks (and I might still not) with another issue. As we are having PGS tested embryos that makes it a bit easier, although we’ve already had one failed transfer down that route so it’s obviously not fail safe! Basically who knows?! Round in circles we go 🙄. Thanks for the kind thoughts 😘xx

[Ketkoot]

Hey Hifer.

Randomly my clinic have just offered me an extra test today to check for ‘sticky blood’!

I have also had 3 miscarriages and all bloods tests so far have been normal so they have recommended we have the care unity test as well as additional bloods before I start IVF next week.

This test unfortunately comes with a cost though!

Good luck with ur next cycle x

[hifer in reply to Ketkoot]

Oh god they all do at the clinic! Let us know about the results. Good luck with your next cycle next week too xx

[Hidden in reply to Ketkoot]

My test cost £900 I think! But it was definitely worth it!

[Hidden]

Hi! After testing homozygous on the MTHFR gene which causes sticky blood and multiple early losses I went onto clexane. I now have a beautiful 6 month old daughter. I absolutely put it down to the clexane. Good luck!

[hifer in reply to Hidden]

Amazing! Just amazing news. Thanks a lot for sharing your experience. Xx

[Fingerscrossed34]

Hey, so it depends what kind of sticky blood I think. I have recently found out I tested positive for antiphospholipid syndrome (APS) and that means I would take 150mg aspirin in the evening from 4 weeks and Heparin from 6 weeks. I lost my daughter at 27 weeks as her placenta wasn’t working and they believe it’s down to APS but they think I maybe only have it in pregnancy. I tested positive outside of pregnancy though so not sure that 100% makes sense. I’d encourage you to ask for an obstetrician and see if you can speak to a hematologist. You don’t need to be pregnant first, they came up with a plan for me in advance. I’ll also get extra growth scans and things partly because of what happened to my daughter but also because APS is a risk factor. Might as well take anything you can get from them to give yourself the best chances. 🤞 They said no aspiring before 4 weeks as it interferes with implantation but I know there is mixed advice on that. x

[hifer in reply to Fingerscrossed34]

I’m so so sorry for your loss. I actually can’t imagine how devastating that must have been for you. Thanks so much for your advice. Once I have my next results back I think I’ll know a bit more so can work out a plan, like you say. Will defo take anything free I can get from the hospital given how much I pay at the clinic! Aspirin does seem to be a bit of a mixed bag. Will bring that up with my consultant. Thanks again xx

[Fingerscrossed34 in reply to hifer]

No problem. Good luck! Definitely don’t be scared to be your own advocate. Think you need those results back before you can figure out what your best plan is. The doctors have been very helpful. I hope they figure out your answers so your next baby can stick with you! As scary as it all is I do think having a specific answer is quite helpful, maybe gives you hope for next time. 🤞 x

[CC2012]

Hi everyone so sorry to hear about everyone’s struggles..Are there any symptoms to this condition appart from miscarriage? We were on our fifth try of iui and just a week before It my partner had a car crash and was taking a blood thinning pain killer for her injuries but stopped a day before the iui..To our surprise the iui worked this time but we only got to 7 weeks and miscarried..I’m really undecided as to whether to self medicate and take low dose aspirin for our ivf or not as I don’t know if this has helped us get pregnant or caused the miscarriage..Or would it be better to take after a positive test next time..🙈😞

[hifer in reply to CC2012]

Hi there, I’m sorry for your loss. Sounds like it’s all been a bit of a traumatic time for you! Your poor partner!! My recent miscarriage was at the same time. In fact they both were! It depends exactly what you have. I’m learning more that sticky blood is an umbrella term for several things so it depends what you/ she has (if anything). I am not a medical expert but I would advise that you don’t self medicate. I was told the last time I got pregnant that I would take aspirin from 12 weeks and then miscarried and did wonder if that would have helped if I’d taken it much earlier. However I would prefer to talk to my consultant or a midwife about this before just taking it if you see what I mean? So many things are going on with pregnancy/ IVF and all the complications that come with it that I would want to seek advice before throwing other meds into the mix. It doesn’t mean the doctors are always right of course, but I’d want a medical opinion first. Good luck xx

[CC2012]

Thank you so much for your advice..We still have a really long wait till ivf starts but it’s just a nightmare to get a doctors appointment at the moment because of covid..We also tried the pineapple core everyday after iui for a week which is also an anti inflammatory so this may have helped also lol..All so confusing 🙉 Dose anyone experience really cold hands and feet all the time and really short and light periods x

[hifer in reply to CC2012]

Can you not get a video/ voice call? That’s how I’m doing all of my appointments. Yep I have cold hands and feet and also have very short and light periods which is also prob why I have a thin lining which has caused me a lot of trouble during IVF!Do you know if that is an issue? Don’t worry the 2 don’t necessarily go hand in hand! X

[kathgibson22 in reply to hifer]

Omg! I am also exactly the same. Always had cold hands and feet . Also always have had thin lining/ very light periods that start with spotting for a day or so! Think I'll mention this to my consultant too Xxxx

[hifer in reply to kathgibson22]

Do let us know if they come up with anything. Mine might be a combo of thyroid (for which I take meds) and maybe sticky blood if I test positive again. Circulation certainly isn’t all that brilliant. Have done everything- acupuncture, castor oil packs the works. I’m active and eat well etc etc. Nothing has helped. So far! X

[CC2012]

Yeh it’s Just very hard to get an

appointment.. I just don’t know where to start though..When she fell pregnant her hands and feet were ice cold and she had a lot of head aches in the last couple of weeks..We originally thought it was maybe thyroid problem but we she had bloods done and all vitamin and thyroid was normal..My wife was also really ill in hospital a month after the miscarriage with a bad urine infection and an abscess on her kidney when they took bloods then it had clotted in the tube before it got tested aswell..That made me look in to the thick blood..She had no problems with her lining each time iui has been done and the last time it was the thinnest it had been at 7 and half mm when it worked that time..I just don’t know what to do this time round 🙄x

[hifer in reply to CC2012]

Oh gosh I’m really sorry. I don’t know what to suggest. I’d have to steer you back in the direction of your GP. They might do a full blood count for her if you ask and explain all the circumstances and situation etc? Good luck. X

[CC2012]

Thank you so much for replying It’s been a rough ride for us this year that’s for sure lol....Yeh think going to the doctors would be best idea..It’s hard trying to tell them everything as they don’t know much because we’re going to a hospital in a different area for treatment...Wishing everyone all the luck in the world from this day on ❤️X