Sticky Blood-Hughes Syndrome Support

New to APS - Trying to Get Pregnant

I have a somewhat unique story as to how my diagnosis came to be... I had a DVT in 2015 and went through 6 months of anticoagulation therapy. Even though I was only 30, no one on my care team thought it was necessary to have a DVT workup. They essentially shrugged and chalked my DVT up to combo birth control and a sedentary job. Fast forward to moving to a new state and getting a new primary care doctor - red flags went off to her when I told her I'd never had a work up done and she sent me to a hematologist.

Two tests 12 weeks apart later, I was diagnosed with APS. The lupus anticoagulant came back positive both times. He opted not to put me on lifelong blood thinners to start, because I'm young and because I'd only ever had one clot and I had a number of additional risk factors at the time. But he did warn that I would need to be on lovenox throughout pregnancy. I was also diagnosed with primary lymphedema at age 16 and hypothyroidism at age 30... so my autoimmune system isn't a big fan of doing what it's supposed to.

Now, my husband and I are ready to start trying to have a baby and -- per the suggestion of each doctor we've seen -- we have a team of doctors lined up... a regular OB, high-risk perinatologist, and a hematologist.

Would love to hear some success stories to keep my spirits high as I know this is likely to be a challenging journey.

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Hi and welcome to our friendly group of people who everyone has got HS/APS!

I first would like to ask you from which country you are and also where and who diagnosed you? You talk of "Lupus"as you probably mean the antibody "Lupus Anticoagulant" and not the illness Lupus (another autoimmun illness close to APS). Please confirm that!

Secondly I must tell you that I have had no miscarraiages so I let that question go to another of us who knows that much better. I am sure it will be ok though.

I now wish you and your husband Good Luck and I am sure someone will answer you soon.

Best wishes from Kerstin in Stockholm

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Thanks, Kerstin. I live in Phoenix, AZ in the US and was diagnosed by a hematologist that I was referred to by my primary care doctor. Lupus anticoagulant is what I tested positive for, two tests 12 weeks apart. That's what led to my APS diagnosis, along with my prior DVT.

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Hi there and congratulations for getting a fairly easy diagnosis which is much better to have now that you want to add to your family.

Interesting your previous history, Thyroid disease and Sjogrens Syndrome are often seen running together and Prof Hughes calls them the big 3. It's very very important that not only are they treating your APS but also the other conditions, especially your Thyroid as that can affect pregnancy. Do you have an Endocrinologist? If not it may well be sensible to add one to your team and get them to run a full thyroid panel to make sure your FT3 and FT4 in particular are in the upper parts of the reference range and don't rely on the TSH alone. You may also want to discuss Plaquenil (not Quinoric) with your Doctors, as that has good results in pregnancy as well as for thyroid and Sjogrens.

Please keep us updated on your progress. Others who have had good outcomes will be along soon I'm sure to give you encouragement.

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I'm grateful the diagnosis was "easy" - compared to what a lot of others have gone through. Thanks for your insight. I did have a full thyroid panel run when they tested for APS and aside from T3 and T4 numbers being slightly off (corrected with low-dose daily Synthroid), there was no other indication of thyroid issues. That being said, my high-risk OB did mention that things can change pretty dramatically in pregnancy as your hormones adjust, so I'll definitely make sure I'm monitored closely and that my medication is adjusted as needed. Also was not familiar with Sjogrens - a question worth asking at my next doctor visit. With so many appointments. I feel like I may as well just move into the doctor's office!

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I think thats a feeling we all recognise! Just a note on thyroid meds. Many of us have not managed well on "Synthroid" Levothyroxin or T4 mono-theraphy. We often find NDT a better solution as it has both T4 and T3. Hilary Clinton takes it so it cant be all bad!

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and me! It works well, shame we have to fight for it, Thyroid UK are doing their best to help with this situation. MaryF

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Who is your medical doctor that diagnosed you. Good wishes for a great pregnancy to come.

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I was diagnosed by a hematologist who's been around for many years (approaching retirement age) at a local cancer clinic.

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Sounds like you've got an excellent Dr! The advice sounds spot on! If you have any questions throughout of your pregnancy just post on here - everyone is super helpful and knowledgeable.

After two miscarriages due to undiagnosed and untreated APS I have just given birth to our beautiful baby girl on Sunday; with the help of aspirin alone and lots of looking after by health care professionals.

It can be done and your Dr seems to have all of the right things out in place!

Good luck to you xx

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Congratulations! Thanks for sharing some positivity. It's so nice to be able to connect with people who understand the feelings first hand. Enjoy your little one!

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Hi Oliversmum - how was it determined that you could do aspirin alone? What looking after supported you? Thanks so much!

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Hi Lauren,

As there are risks to taking blood thinners at Guys they want you to try a pregnancy on aspirin first and if that falls they will offer you aspirin and heparin, unless you have had a still birth or some other type of blood clot like a DVT.

To be honest I was scared stiff of having a still birth on aspirin only and I push really hard for the heparin but as I had bleeding in the two miscarriages it was pointed out to me that the heparin could cause an unwanted bleed and in the end I just had to take the chance.

In terms of support you get lots of appointments. My midwife was really good and completely understood my anxiety I would go and see her weekly to hear the heart beat from very early on until I had regular movement from baby. You have lots of scans too, to check on growth of baby and the blood flow between you and baby is well. I was under the care of two consultants and midwife during my pregnancy. If there is anything that you want to reassurance you, ask and given the circumstances general people will do their best to get you the help you need.

I had a pain in my groin in pregnancy and they couldn’t do the scan for a dvt that day so the kept me in, until a scan could be organised.

If there is anything else you would like to know, just ask.

Wishing you lots of luck xx

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Thank you so much for your response. I am just recently diagnosed after two years of infertility, and then finally a natural conception that unfortunately ended in a MMC at 11 weeks. I required a D&C and then had a clot of blood stuck in my uterus after the procedure which required a second procedure. I was finally tested and dx with APS and have my first appt with a MFM specialist coming up. The thought of daily injections scares me and I’m wondering if I might be able to make it with BA and anticoagulant herbs... this is all so new and scary!

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The injections do sting a bit. I had them after delivery.

I would say do some reading, particularly case studies or past experiences. It really opens your eyes to APS - it is not to be taken lightly. And make your Dr / consultant aware that you have done your own research. Do you have any other APS symptoms?

You need to be informed about APS to be able to take informed decisions about your care, many on this forum will tell you the same old tale of Drs contradicting themselves or being ill informed to treat them.

I also had acupuncture pre pregnancy and throughout pregnancy to promote fertility, good blood flow and reduce stress. Not sure about taking herbs in pregnancy, you need to be very careful about potential effects on your developing baby.

I wish you the very best of luck with it all. Please keep us all posted with any questions or queries you may have. And we would love a picture of your little one when they arrive!!!! Xxx

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I’ve had the run around for over a decade with doctors... my favorite time was when I was prescribed an antidepressant because I was fatigued and complaining of joint pain and freezing cold hands, feet and nose, bc they couldn’t find anything in my lab work (negative for RA, lupus or thyroid disorders), only a high ANA, which is “normal”. That started me on my path to not trusting doctors and leaning toward natural, integrative wellness. I wasn’t depressed, I was sick!

More recently, I told my RE the symptoms I was experiencing with implantation difficulty and thick blood, asked him to test me for APS and he said no, it wouldn’t affect implantation... one year later, post mc asked for test again, he said no, need to have MORE mcs... I wouldn’t leave without the orders, and lo and behold I tested positive twice. Such a frustrating system!

Since my initial struggles I’ve worked to heal my gut, and feel a lot better. Still struggle with some POTS-like symptoms, raynauds in my feet, ear pain if it’s cold, motion sickness, aching pain in my veins - esp with blood work, and some issues with menses - thick blood which probably adversely affects implantation. I’ve only successfully implanted once, I’m not currently pregnant, but hope to be again soon after proper treatment with the MFM (hoping he understands APS, if not I will find a for-sure specialist).

I know I’m still symptomatic, but I’m much better than ever before. I’m able to work full time, and I take good care of myself. I get acupuncture and chiropractic regularly and my acu is doing research into APS from a TCM perspective bc she knows I would much rather manage as much as I am able to naturally. Of course when I get pregnant again I will do whatever’s needed to have a healthy baby, even the injections. It’s just a really scary situation! Such a terrible immunological disorder.

Thanks so much for your kind words and support!

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Did you test positive to all the three antibodies twice within 12 weeks time between the tests?

Take a copy to have as a security that you have tested positive twice.

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Tested positive twice on one igg antibody.

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Was it anticardiolipin or beta2glycoprotein1?

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I also wonder if you are taking a Baby-Aspirin every day even if the Doctors have not told you to do so. 75-100 mg is enough. If you get stomach-issues I have heard that there are coated tablets but I live in Sweden and it may be different where you live.

What are you main symmptoms today?

I think and hope you will look for a Specialist at last so you will be completely understood.

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It was an anticardiolipin I think. Phos. Serine. I’m still learning...

I was rx baby aspirin and am awaiting it to be filled by the compounding pharmacy as I cannot take any of the OTC ones due to the inactive ingredients (eg corn, food dyes).

Current symptoms are mostly listed above - they are up and down. Some days I feel almost normal, other days are difficult. I need to get at least 8 hours of sleep, stay hydrated, eat well, move just enough, and not stress myself out in order to feel okay. Then get acupuncture, chiro, massage, yoga, to maintain. I also take a lot of supplements including a blood thinning enzyme nattokinase, which really seems to help.

I’ve never had any other clotting events aside from the MMC at 11 weeks. I do sometimes get light chest pains (aching) and I also get an aching in my veins sometimes, which has always been a mystery to me until now. It’s also scaring me now bc every little thing I feel vascularly I worry it’s a clot. :(

I called the doctor’s office that I’m being referred to and asked about their experience with APS and they said they have about one appt a day treating this issue... I hope that’s good news!

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Better you take the antibodies again I think. Twice with 12 weeks behind the two tests.

Anticardiolipin antibodies (aCL)'

Lupus Anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

I wonder if it is true they are talking of APS when they say in Doctor´s office that they have one appointment every day treating APS.........APS is not a common issue and it is a fight to get to a Specialist of autoimmun illnesses who knows how to treat us.

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I feel you pain re Drs. Although I am blessed to have a fantastic GP my consultant was another story.

Your right it’s a completely missed up system, having 3 miscarriages before testing is completely unacceptable (especially when you have other symptoms) but even if you manage to get the repeatedly positive results like I have - because you don’t meet their criteria you won’t get officially diagnosed.

I personally think that all this sticky blood also effects fertility (not just implantation) i started the baby aspirin months before tried conceiving after my two miscarriages (along with acupuncture) and fell pregnant first go. Might be something to think about.

And do go tell that stupid Dr that a raised ANA does mean something... and that unfortunately is why you need to research up to your ears - to point out to these arrogant Drs when they have missed something. I used to carry all of my letters from consultants and all my blood tests with my pregnancy notes so I could wave them around when required.

Good luck again. This forum really is a God sent. The folks on here are so knowledgable, and have so much first hand experience. Don’t be shy to ask questions if you need. Xx

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Thank you! 💛

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Hiya JessicAZ, you were asking for success stories. Well, I am LA positive like you. But unfortunately I did not know about this yet when I was pregnant. Nevertheless, I did deliver a healthy son at 33 weeks. The delivery was far from ideal with HELLP syndrome and obviously premature, but we survived. Without treatment. So, with the treatment you're arranging, your chances are much better. Good on ya! And good luck!

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Sorry to hear you had a tough time - I'm definitely grateful to be going in, armed with a diagnosis. I know that's not the case for most. Glad everything turned out for you and thanks for sharing your story!

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Hi, I am also LA positive. I was diagnosed after two stillborn sons, one at 28 weeks and one at 16. A week after my second birth I had a stroke and seizures. I was in icu for two weeks. Fast forward to now and I have a perfect almost 6 month old baby boy! I was on aspirin and tinzaparin for my pregnancy and induced at 36 weeks. Although we had a small nicu stay it was directly related to my APS. My monitoring included bi weekly ultrasound to check growth and blood flow and weekly nst. It was super stressful but we made it. We would like to try for one more in the near future and hopefully have a similar outcome.

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Wow - how scary. So sorry to hear you had to go through such much pre-diagnosis. You're a strong woman!

I'm planning to take a sleeping bag and move into the perinatologist's office, as it seems I'll be there a lot. :) Very glad to hear your happy ending and wish you all the best! Thank you for sharing.

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Hi I'm also LA positive, I was diagnosed after losing two babies at 22 and 23 weeks of pregnancy and a 8 week misscarriage. I haven't had any other symptoms. After my diagnoses I had a healthy baby after being induced with 38 weeks of pregnancy Thanks to clexane 40mg and aspirine. I did not have any complications, it was an very uneventful pregnancy. Now 19 weeks pregnant again and hoping for another succes story.

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My doctors are planning to put me on a more extensive regimen since I had a clot in the past. The plan is Lovenox shots - twice daily, and low dose aspirin. I'll have to go in for INR monitoring and have a perinatologist who will do regular scans. Fingers crossed for the same outcome you've had. Thanks for sharing and best of luck with your pregnancy!

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So I can't tell the world yet... but I can tell you guys! My husband and I tried for pregnancy and got a positive test today!!! First try, so clearly, fertility is not an issue for us (yay!). So excited - and a little terrified. All normal feelings, no doubt. :)

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Congratulations - I wont tell anyone, your good news to share!! xx

Hope all goes well for you....

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Thanks Holly!

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8 weeks in... first scan tomorrow. Fingers crossed!!

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Congratulations and Good luck. FYI, while on lovenox they do not monitor your INR as lovenox works on different area of the clotting cascade. Ask them about it when you go so you will understand. Then ask what the plan for anticoagulation will be once you deliver. Then you will have no surprises. Here's to your new little one🎉

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Thanks! I'm working with a hematologist and have an appt to follow up on dose / plans on Friday. So far, the plan is lovenox until 35 or 36 weeks, then we'll switch to heparin. Post birth, I'll be on Coumadin / Warfarin for 6 weeks or so. It's an adventure, for sure!

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So you won't be breast feeding the, not to be to personal, but I think warfarin is contraindicated, nowt sure about lovenox either come to think of it. Something you need to think about...

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Shouldn't you be on anticoagulation for life now since APS and DVT history too?

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I had a lot of other extenuating factors that happened around the same time (had a sedentary job, had recently had a weeks-long respiratory infection and pneumonia, was on combo birth control, etc). Since I'm so young, had all these other things going on, and my clot was not dangerous, my hematologist opted not to put me on lifelong anticoagulation just yet. He did say, however, that if I get another clot, I'll be on for life.

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Good point. I would like to breastfeed - will have to ask the hematologist about that.

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Good luck 🎉💪

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Update: 28 weeks pregnant now and APS has been causing some havoc. I had placenta blood flow issues, first detected around week 21. At week 24, there was some absent flow and they found IUGR (intrauterine growth restriction) with the baby. That means he's small in size for his gestational age.

They admitted me to the hospital for monitoring at 25 weeks I'm still in the hospital now - coming up on three weeks tomorrow. I was on twice-daily 20-minute non-stress tests and bi-weekly doppler ultrasounds at first. However, the blood flow got worse and in addition to absent, I have persistent reversed flow now.

Baby is still doing fine and is on fetal non-stress monitoring 3X a day. However, it looks like I'll be delivering fairly soon. We're watching closely and if baby or I go into distress, it's go time. Up until 25 weeks, it as a relatively easy pregnancy. Since then, it's been very stressful and knowing that baby will be facing months in the NICU is tough. Not what you hope for, but considering than twenty years ago, almost zero moms with APS were able to have babies because they didn't know how to treat it, we've come a long way. Your positive thoughts and prayers are much appreciated as we head into this next chapter.

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