I am 31 this year, with a history of 4 consecutive miscarriages & another one that I am going through now (losing a twin pregnancy). I've been trying for years and fell pregnant 5 times with the assistance of IUI as I have PCOS. I've been in the dark all those years as I thought my problem was PCOS until my 4th miscarriage when they ran (B2 Glycoprotein) & (MTHFR) tests on me and found that I have APS- results were strongly postive.
Then, they discussed a treatment plan and put me on Aspirin 75 mg and Clexane 0.5 twice a day when I was trying again. My IUI succeeded and I got pregnant with twins that I am losing now at 7 weeks as usual. My doctor cannot explain why is this happening now and keeps saying maybe your blood is still clotting!!
By the way, I tested my lost babies and they were normal so having a chromosomal issues within the babies is not the answer.
Now, I am waiting for the twins to miscarry as I don't wanna do D&C anymore.
I am thinking of giving up? As I was on such a high dose of blood thinners and steroids (25 mg) and all kinds of aids such as Progesterone...etc
What do you guys see and think? Any advice? I am at a stage of my life where I need honest and straight forward answers even if painful.
Thanks in advance,
Reem
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Reem04
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I am so sorry you are having such and awful time, are you under a Hughes Syndrome/APS specialists in the UK? A team familiar with your condition? You are right that PCOS can cause some problems, and also thyroid problems go alongside PCOS and Hughes Syndrome, it is crucial that they look at the whole picture, which would mean doing far more testing than is usually done, I do my own, and pay for them go get an accurate picture: A slow thyroid or out of kilter thyroid can cause problems in pregnancy, thyroiduk.org.uk/tuk/testin...
Unfortunately if only the TSH test is used, then some slip through the net, also others on here have also had progesterone used in some cases alongside their standard anticoagulation. I hope at this very difficult time you are being well supported, please do feel you can come on here for support form other members or us if you need to do so.
Any good team will be looking at the whole picture alongside your levels of B12 D and Iron to try and rule out anything that could be adding to the problems you have faced.
I did all the tests you mentioned but all came back normal.. My only problem seem to be the B2 Glycoprotein gIG (strongly) and MTHFR (slightly)
You think I should stop trying? My doc said, in his opinion, my future pregnancies would behave the same way unless they break the blockage - he believes that there is a blockage preventing my pregnancies from developing and cannot find any medical explanation other than APS although they tested my blood to see the effectiveness of the meds on my body and it showed that it was working!!
Ok, yes I remember now about your location, sorry we get so many enquiries, I can't advice you on what to do next other than, do not try again if you are going to until you body has had a good long rest. You must allow time to recover, it must be very difficult for you. Big hugs coming from the UK MaryFx
Firstly I am so very sorry for your losses it really is soul destroying. I lost a fourth pregnancy while on 75mg of aspirin and my dr told me that unless I had a second tri loss they couldn't give me anything else so I went privately and had a TEG test done. This proved that 75mg of aspirin was not enough so by next pregnancy at 30 I was put on 150mg aspirin, 5mg folic acid, progesterone pea series and 2 shots of fragmin per day. This resulted in a healthy daughter born full term. It may be that you need more aspirin too? Aspirin and fragmin work in different ways so it you may still be clotting. Plus twin pregnancies are much more commonly miscarried and even with treatment unfortunately we still have the same chance as any other lady with no problems miscarrying. Sending you lots of love x
Hi, I'm really sorry for your losses. It is a really difficult decision to make. I had 15 miscarriages before I was diagnosed with Hughes syndrome in 1999. I went through several IUI's amongst many other different types of treatment. Eventually we decided that we would give up and not put myself through any more trauma. Then I was put on asasantin and plaquinil and had a son in 2000. It was a difficult pregnancy and he came a month early. And has not been the healthiest child but at nearly 16 is doing well.
You have to go with your heart as to whether you continue to keep trying. But the treatments seem to be so different for each individual.
I understand what you are feeling about the D&C I felt the same and I refused them in the towards the end. My thoughts are with you.
Please only give up when you can bear no more. I have several miscarriages and asked for a second opinion after my local NHS failed to spot APS. I was referred to St Marys in London and had to wait a year for the appointment (I didn't realise I could have asked for a cancellation apt and got there sooner). Nevertheless I am so glad I travelled to London for the appointment. The team there were brilliant and after the first blood test I came back positive with two markers for APS. These are people that research reoccurrent miscarriage so it comes as no surprise they could spot the APS and my local NHS couldn't. The next time I fell pregnant, just after I was 40, I was to take a tiny dose of aspirin after a set length of time and then as soon as my baby's heartbeat was detected I had to inject heparin into my tummy. I was covered in bruises by the time my daughter was born but it was worth all the pain and the heart ache. She is a beautiful, fit and healthy 7 year old and full of life. I did fall pregnant again 2 years after I had her but after another miscarriage I decided one child was more than enough to be blessed with. The pain was worth it. Ask to be referred to the specialist at St. Mary's if you can, and good luck. 😊
It's so hard, I only had 3 miscarriages including one 'on treatment' (aspirin 75mg and heparin low dose), then managed to have a successful pregnancy (successful outcome but it was very complicated and I ended up in intensive care with severe pre eclampsia). This was all felt to be linked to APS and I've been advised for any subsequent pregnancies to increase the doses of aspirin and heparin so maybe that's what you need(?) I agree with others it is worth seeking a specialist opinion as I was lucky enough to get one early on. Very best of luck to you xx
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