Recurrent Miscarriage Support - tests, treatment, trying again - thread 10

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Hello star. I am taking the pessaries from day 21 to 28 and then test and will continue if pregnant. Maybe BFP is late?

I don't know as so many doctors have different advice...

Welcome star, so sorry to hear what you have gone through. It's just awful, isn't it? All the hopes and expectations, every time, and then they get crushed again.
And yet, we all keep trying - I think we sometimes don't give ourselves enough credit...

I've also had 4 mcs in a row, and nothing is 'wrong' with me or DH - however, mine are most likely happening due to chromosomal abnormalities... At least that was the cause for 2. Have you had your embryos tested at all?
Another thing you might want to look into is immune issues - high NK cells etc. There are many others here who now more about this than me. But there are a few places that test this, but yes, you're probably looking at private tests... What have you had tested? Did they look at clotting issues? Sorry, you might have said, but I'm on my phone.

coco that sounds really positive! I agree that it's easy to forget that there are other important things in life, too. Ttc can take over everything! Good luck with whatever you decide to do next, it sounds as if you've got a plan

I'm currently enjoying my coffee (first and only cup, trying to reduce the caffeine intake).
Looks as if I ovulated on CD10 this time We dtd, but I think we might have missed the crucial days, since I thought it'll be a few more days. However, I've managed to fall pg before, having dtd only once in my 'window', so I guess I'm now in the 2ww. Sigh...

Hello star. Sorry for what you have been through but welcome. Do you know what testing has been done already? I had a TEG test at St Mary's in London for example which I don't think is done everywhere, and Prof Quenby in Coventry tests for NK cells, which are an immune response, ehough only privately. The nhs doesn't currently do that test as they don't think it is wholly treatable, so you would need to look into it before going down that route. You could ask for an nhs referral to St Mary's or another specialist clinic if you feel you have exhausted the options with your local RMC. I wouldn't knock the NHS on this as my appointment has only taken a month to come through and it is three hours long and includes scans and blood tests which I know cost a lot. But expertise on mc is spread thinly and you have to push to see the specialists. Wait till Baking comes online. She will tell you more about NK cells.

Coco. I am sorry for what you have been through. You sound amazing. I am glad you have found a new positive light. Wishing you joy.

Hello star, was on here last night but your post didn't appear on my computer until this morning. Sorry that you find yourself here,and that you have been through such a horrible time. This is a good place to find plenty of support. I too am on my 4th loss in a row, though all of mine have been quite different and i know that a chromosomal abnormality was the cause for at least one..waiting on results for the last one.

As others have mentioned, have you had any testing on 'products' post mc? Were the tests that you have had, done by your gp or local rmc clinic? With me they found a slightly exaggerated clotting response when i am pregnant, though everything is normal when i am not (and still not the cause in mc 2 and 3). Did they test your blood in pregnancy? Other possible tests could be TEG (another clotting one), thyroid, and possibly blood from you and OH to look for any genetic/chromosomal issues. Also scan to check your uterus is structurally normal. Then as mentioned, there is the NK cells route, which i am also wondering whether to explore.

NHS vs private: think it depends on what your local clinic is like. I am lucky enough to be under st.Mary's in london on the NHS..it may be worth asking about a referral. I dont have any experience of private, but others on here do. Sorry am on phone cant read back, but hope you find some useful advice and support on here.

coco how horrific to be told your son had a life expectancy of 2 years. So sorry you had to go through that. I'm afraid I dont know anything about SMA1, or what your and his day to day life is like? I am glad that you have found counselling to be helpful, and are seeing a way to move forwards and look after you.

jbrd fingers crossed, hope tww speeds by

Hi star I'm sorry for your losses, this is a thread nobody wants to join, but a fantastic place for support. You sound to be pretty much where I was just over a year ago, in the middle of my 4th loss having tried the 'can't hurt' high dose folic acid,aspirin and progesterone. My local RMC clinic couldn't find a problem and couldn't offer anything except TLC in a future pregnancy, but I did get that embryo tested and it was chromosomally normal, which prompted me to look into immune issues/NK cells. Testing isn't available on the NHS. many of us have now been to see Profs Quenby/Brosens in Coventry, who charge £360 for their implantation clinic which is a consultation, scan, uterine biopsy and uterine 'scratch' performed 7-10 days post ov. The biopsy is tested for decidualisation (how the lining prepares itself for pregnancy) and for Natural Killer cells, elevated levels are associated with recurrent miscarriage. In laymans terms NK cells attack the embryo/affect the development of the placenta. The immune response recognising the embryo as foreign which is normally suppressed in pregnancy is elevated and this prevents implantation. The 'scratch' ( sounds worse than it is) stimulates a healing response that improves the lining for the next few cycles.
I was diagnosed with high NK cells and treated with progesterone from CD21 (agree with tiny that from BFP is likely to be too late) clexane from BFP (heparin injections, protect the placenta) and steroids from BFP to suppress the immune response. Our next pregnancy was a success and my lively daughter is 10 weeks old.
I'm not clear if you've been seen by an NHS RMC consultant or just had some blood tests done by your GP. In your shoes I'd push for NHS referral if you haven't had one, even if they can't help you will then get close monitoring in a subsequent pregnancy, but also pursue the NK cells route. You need to have had 2 periods post MC then be not pregnant and 7-10 days post ov for the tests, so it involves taking a break from TTC, but most of us have found that beneficial in itself after so much sadness and stress.

coco I'm sorry to hear about your son's diagnosis. It's fantastic that you are finding ways to live positively with it and that he is defying expectations.

New thread link

Thank you everyone for replying really appreciate it I've been sooo busy today promise I will post back tomorrow xxx

Lively daughter??? lovely ....

Hi ladies sorry it has taken me time to reply
These are the tests I have already had done (excuse me if they make no sense I am copying them off the paper I have been sent, I have no idea what they mean and I had to ring to ask them to explain them to me as it's like trying to read the matrix !!!! )
-thyroid function
-anti mullerian hormone
-protein c and s
-prothrombin
-lupus screen
-active protein c resistance
-pelvic ultrasound
And a few more which are just letters like APTT, INR etc... Which I have no idea what any of it means ? I don't know if u guys do, I felt it very weird that I didn't have any follow up appointment to discuss these results I had to ring and ask what they blooming meant and all they said was basically that they was all fine expect that the active protein c resistance was meant to be within the range of 2.5-3.45 and mine was 3.90 so sent me for a retest which them came back "normal" ?

After having these tests done they proscribed me the 200mg cyclogest one in the morning and one in the evening even though they told me hormones were ok that it wouldn't do any harm so to take it anyways,.

I don't want to self medicate but A few people I have discussed things with tell me that they took a small dissolvable aspirin which carried them full term, some of which did this off there own back and a few under the instructions of a doctor? What's ur guys opinion on this? I did ring and ask my specialist about taking aspirin as I have read so many people take it and he said told me for me he thinks it would do more harm than good but when I asked why it got brushed off!

Regarding private health care, I am tempted to look into it as i just feel like don't understand any of more now than I did when we first started the testing at the start if may, i am interested by the NK cells testing i would like to look into this further. Someone mentioned to me today about zinc and copper can anyone explain this to me further?

Sorry if u guys think i sound like a complete amateur at all this but if im perfectly honest I have no idea what any of it means and when I try and ask questions through the secretary I feel they think I am asking stupid questions ?

Any info u guys have would be greatly appreciated x

Hello Star,
It sounds like you've had a comprehensive range of tests. I'm glad you've had them done, but, yes, it if frustrating to not know what they all really mean.
If you're interested, here are my thoughts on the aspirin issue. I'm not a doctor, but this might help you decide what to do.
Do join us over on the new thread (link in Bakingtins' comment below), and keep up with all the ideas, thoughts and experiences on all our RMC journeys.
xx