I came across this forum with a broken heart. I was diagnosed APS (single positive) 5 years after my DVT+non-fatal PE and 4 miscarriages. This is quite sad because I am actually a medical personal and always suspected myself to have this condition. My hematologist did not suspect APS from my DVT but blamed my 7 hours on economy class for that. My OB could not detect my pregnancy since it is biochemical (beta hog negative) and always miscarried every early at 3-5 weeks. The fact that I have one 4-year old son delivered normally also make my OB thought that I should not have had APS. One of my friends suggested me to take ASA at my 4th attempt and that was when my Beta HCG turned out to be positive and my lab turned out to be APS.
After I was diagnosed, I read a lot. I finally found my hematologist and OB. They are very understanding and kind. We planned together for this 5th attempt. I started Levonox therapeutic dose, ASA, Hydroxychloroquine at an ovulation day (preconception). Beta HCG increased on D11 which was considered a bit late. Today is 5th week and it fell to negative value with the scan confirming another miscarriage.
Is there anyone with the greatest medical attempt like me but still have negative outcome? I have no idea how my first child came. I just would like to pray for that miracle again. As a medical personal, I could not help thinking about all data and medicine over and over again and wonder if I could do anything better? I even read about NK cells and IVIG but wonder if anyone has any experience?
Or these things are all about faith and destiny? I founds some people shared valuable experience having babies in the era before APS diagnosis. I have been reading your comments in this forum and found they are helpful. Any comments or suggestions will be appreciated.
Thank you
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Stillsomehopes
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You poor darling, my sympathy is with you. Just be kind and gentle with yourself. Your body has been through trauma as well as your mind.
Imagine you have a soft pink blanket wrapped around you. Snuggle in and let that comfort you. The colour pink is associated with love and also green is associated with peace of mind. So once rested if your able to go out into nature it will help you.
Just for a while, try not to focus on the how and why just allow yourself to be.
I desperately wanted a second child too. It took 5 years to get my son. Then a few years later I wanted a second. Some said I should be grateful for having one. I was. Everyday I counted my blessing but the primal urge made me want more.
Now I understand why I didn’t have any more. It turned out - My son has ADHD and kept me very busy. I took on my niece and helped bring her up. My health became much more restricting. So sometimes life knows better than us what the future holds.
If you are meant to have another child you will. In the mean time I’m sending you hugs. Don’t be afraid to talk to people about what u r going through physically, mentally, emotionally. If you have no one. Talk to us or a miscarriage support group. Don’t ever feel alone.
You may want to try Reiki. It is an ancient Japanese Healing Technique that allows the patient the time and space in which, using the energy the practitioner is channeling, they can heal.
It can’t cure me but it does really help me cope. Lessens pain and helps me sleep. It definitely helps patients relax. It’s non invasive.
Because people are unable to attend our physical Reiki Clinics at the moment I am leading a weekly on line session. It starts at 8.30pm GMT and includes a relaxation and a remote healing session.
It is free. I’m just trying to help people. So there is no fee and no strings. It is not associated with any religious beliefs either so everyone can try it.
You can find me at 8.30-10ish Live on Facebook everyone is welcome
I’m not sure if I’m permitted to post the Facebook address but admin will remove it if not. Then you can PM me. Likewise if you have any problems finding us.
Please find us before Tuesdays session so u can get help if u can’t find us 💋 love n hugs Wendy
Often when our mind isn’t in a good place, our body’s aren’t either. So look after your whole self xxx
I am so sorry to hear about your loss, your miscarriages should have triggered more investigations, this is not an uncommon situation, and very sad that this still goes on. Please make sure that any doctor/consultant is fully up to speed with the condition. We are here for you, a huge hug coming your way, please do reach out to your friends and family, social media contact, phone calls, emails etc, MaryF
Oh my I’m so sorry lovely. It’s something you can’t imagine unless you’ve gone through it and I understand you must be heartbroken. As already suggested please take some time out for you and your body - both need time to recover.
I wish I could take it all away but unfortunately I can’t. The only thing I would recommend for anybody whether they are healthy, very unwell, young or old involves no medication at all. It’s 100% safe. If you’re on Facebook join a group called “Inclined Bed Therapy” and explain everything you can. The people are wonderful especially Andrew K Fletcher who is the brains behind this. I can’t join you unless we are friends on Facebook. Basically it’s all about circulation. I could go on but I think you will benefit from the testimonies and interviews. I know there are 2 women who couldn’t conceive but they inclined their beds and became parents. However, they didn’t have APS but that’s where Andrew will come in. He’s so friendly and approachable. He just wants to help people, no more, no less.
Welcome to our understanding group, I am so sorry for your losses, as the others have said, be kind to your body and mind. They were all special and loved by you.
For me it was the other way round, I lost my 1st baby at 37 weeks, it was in the age when APS was not known. The rollercoaster of emotions, anger, grief, blame, why, quilt were all so strong, then comes the fear of trying again. I do understand, but this is individual to you.
I went on to have 2 lovely healthy (ish, my son was poorly for many years but ok now).
I'm now told medically (triple positive) that I was extremely lucky to go on and have 2 babies. My miracles.
So there is always hope and a lot of guts, as it's hard, you have your medical knowledge but it would still help you to have a specialist in APS.
Many on here will share their history and we all have total empathy, I've read many success stories here that hopefully will give you confidence, hope and strength- for now heal, sending you a big virtual hug. x
Thank you very much for sharing. It must be tough for your loss. You are very lucky to have two beloved children. Are both of successful pregnancies without any medical helps? (Since you mentioned that APS was not known at that time)
I will try to heal myself for now, like everyone said. Reading positive stories like yours and others really helps. Thank you
Yes, the two successful babies were without medical intervention although I was carefully monitored throughout.
Yes it was tough, he is not forgotten.
At the time I was given many words of comfort by others but it didn't really make a lot of difference to my pain, as our grief is unique to us, each child any of us loses is special to us and takes a part of us with them.
Stay with us on here, as we can support each other, learn from each other.
I am so sorry for your losses it’s is so tough. My dr tested me after 2 miscarriages (early at 6-8 weeks) as she had a feeling I had APS. I then started daily 75mg aspirin for my third pregnancy but lost that pregnancy at 14.5 weeks. I was devastated as we had seen a heartbeat at 12 weeks and truly thought aspirin was the answer. We tried the same for my fourth pregnancy but again it did not work. After lots of research I paid to see Dr Raj Rai at St Mary’s in London as from my research I knew I needed aspirin and heparin to have a successful pregnancy and did not qualify for it on the NHS as I had t had a third tri loss. I had a TEG test and this proved I needed 150mg aspirin and heparin which is the same as levonox. With my fifth pregnancy I had the aspirin and heparin along with progesterone suppositories because I had a short luteal phase and I had no problems and my daughter was delivered by induction at 38 weeks.
I couldn’t do pregnancy again as I found it too stressful but my son had other ideas and was a lovely surprise. I had the same treatments and again they worked perfectly.
There is hope and there are further treatments that you can discuss with your dr.
Thank you, starships. I am sorry for your losses. It is very nice to hear that you received proper medical care which resulted in your lovely daughter. I have never heard of TEG test before. I live in Asia. Is TEG test a standard in your country? I was on 81mg ASA and therapeutic dose Levonox on this miscarriage. Do you think having a test for TEG will help?
The pain does diminish over time but never goes away but it’s also an experience in my life which shaped me and increased my empathy for others. A TEG test is not standard. In the UK there are only 4 machines that can perform the test. I travelled 250miles to have the test. As far as I understand it’s tests your bloods clotting in real time. I was also on 75mg aspirin when I had the test but it proved I was still clotting too fast hence doubling the dose. I think it would be able to tell you if the treatments were enough to sustain a pregnancy or if you needed more. But speak with your dr. My dr was very supportive of me getting the test. She was just sorry she couldn’t do it for me herself. Good luck and let us know how you get on. Xx
I'm so sorry for your losses that is so difficult for you and you are so strong to keep trying. I also have aps and have sle, I am triple positive aps quite strong levels too.
I was already on well established aspirin daily 75mgs daily before my pregnancies.
I have 2 children my son is 7 yrs now who I took aspirin for the pregnancy and he was born at 38 wks they wouldn't let me go to 40 as the risk of placenta failure. He was 5lb 12oz so fairly small then I had fragmin daily inj for 3 months
(ps I had a loss when my son was 1 yr old but due to anancephely not the aps awful and worst time of my life)
My daughter now 4 yrs old I had aspirin and fragmin inj daily due to the thought that my son being small they felt that I needed the fragmin which may have helped my daughters growth but she was born by induction at 38 wks and was 6lb 2oz. Then continued fragmin daily inj for 3 months after.
Throughout my pregnancies I had regular growth scans and early ones at 6 wks.
Good luck for the future and now that you know what you are dealing with there can be ways to help so I really hope for you xx
So so sorry. I know how frustrating and disappointing it can be. I also had 5 miscarriages. My sons were born in 1997 and 2000. The doctors never diagnosed me until 2015, but a very smart high risk OB put me on a daily shot of Lovenox and Baby Aspirin for the first 6 months. He said, I’m not sure why this works, but women were benefitting back then, so we gave it a try and that was enough to carry me through the pregnancies. Both of my sons were delivered by Caesarian section. Unfortunately after my second son was born I developed a DVT that moved to my Inferior Vena Cava 3 weeks post delivery and I was rehospitalized ( with a 3 year old and a 3 week baby at home). During my last month of my second baby, I was losing my peripheral vision from likely micro clots, daily. I also tried to bank the cord blood and there was no cord blood to bank. I had probably clotted it off so I was fortunate to have a healthy full term baby that was only 5 pounds at birth. (today he is a healthy college boy ).
I guess I would tell you that you should keep trying. It isn’t easy...giving shots to yourself when you are pregnant isn’t fun...At least today you have a diagnosis and good physicians that know about your particular situation. You will need careful management Pre and POST delivery. Best of luck to you...take care of yourself ...I will keep you in my thoughts and prayers ...you can do it!!!
Thank you very much a_schaider. Your OB who put you on Levonox is very smart. Hearing your story (same number of miscarriage like me) and also DVT really gives me some ideas that I am not alone here. I have my tears when I read "you should keep trying" .... You know, it is super exhausted for me but deep down, I really hope I will be able to keep on trying. Being mom is the best thing that ever happen in my life. Our family aim for at least 3... but after 5 miscarriages in a row... I do not dare to wish for anything.
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