Recurrent Miscarriage Thread

[Camichelle]

Ugh. My appointment with the RE was frustrating. I expressed my concerns on wanting folate vs folic acid for the mthfr but was dismissed and told there's too much inaccurate info on the Internet and the folgard is fine. Wants me to take that, 2 baby aspirin a day, and 2000 units of vitamin d for a month and then test homocysteine levels. If all is good then try again in July. I also have elevated protein c levels which she wants to retest after the folgard. I asked about lovenox since I'm homozygous meaning double gene mutation but she said no because I've never had clotting issues. I asked about the pcos and although she doesn't dispute I have a mild case won't prescribe anything because I don't have problems ovulating. I just feel like what's she's prescribed is not going to be enough to prevent another loss. I got all upset and emotional and doc and hubby didn't understand why which made me more upset. Dh knew all of my concerns going in and agreed with me but when doctor dismissed them he basically agreed with her and didn't understand why I got so upset and was crying. Let them go through the physical and emotional roller coaster of 6 losses and then I'll ask them why they're so upset. Grrrrrrrr. Ok, vent over. Thanks for listening.

 

[dairymomma]

I'm sorry your appt didn't go as well as you'd hoped. Can you see another RE who may be a bit more open to trying something else?

 

[Camichelle]

So sorry for your loss NDH .

 

[NDH]

Thanks for the love and the suggestions. I am going to go down the baby aspirin route after looking into it more.

I didn't realise 23andme shipped internationally, so I'm now also under negotiation with DH to get us both tested when we can afford to. In the mean time I'm focusing on my health and diet as that's all I can do until we're in better financial position to pursue alternative treatments (TCM/naturopath) or in depth medical testing.

 

[blueblue]

NDH -

Not sure if this will help as I'm in the UK but these are the tests my GP was able to run after my 3rd loss, I had a referral from the Recurrent Miscarriage clinic pending. They were from the list of screening tests for recurrent miscarriage,maybe your GP might be able to do some of them?

FBC (full blood count - I think this was to check for anemia?)

Blood clotting - heritable:
Factor V Leiden
Prothrombin gene (20210)

Thrombophilia screening:
Protein C
Antithrombin
Protein S
Thrombin time
Pro thrombin time
APTT

Anti-phospholipid syndrome (hughes syndrome) - blood clotting:
IgG Anticardiolipins
IgM Anticardiolipins
(I think there should also be one for lupus anti-coagulant but it's not on my printout)


Thyroid:
TSH
Free T4
Thyroid peroxidase (anti-thyroid antibodies)

Lupus this was part of a rheumatology profile to check for auto-immune issues:
dsDNA
Anti-nuclear factor

Vitamin D


Other tests I've had:

Specialist tests the GP couldn't run:

Karyotyping (to check for chromosome issues)

Free T3 (thyroid - to check conversion from T4 to T3 - don't think this is usually part of the testing but I had some thyroid symptoms)

Methyl malonic acid (to check for B12 conversion - don't think this is usually part of the testing)

Homocysteine (they also didn't run the MTHFR tests routinely)

I had a few tests including homocysteine via a private blood tests website.

Cami - I'm so sorry , it's really frustrating when you don't feel you're being listened to. Loss after loss is so hard to go through.

 

[NDH]

Thanks blueblue, that's very helpful. I will print it out and take it to my GP on Monday to diu if she can run any of those (not done recently. I know I have had a few of those done)

 

[NDH]

ffound my notes and my GP ran biochmistry, glucose, thyroid function, COAG (PT, INR, APTT, thrombin time, Fibrinogen), haematology, CLA (cardiolipin/beta2glycoprotein IgG Abs), Lupus.

That was a month ago. Yesterday she also did a cbc, redid my thyroid function and T4 (she won't check for antibodies with my tsh in normal range though...) and something else, but that was a pregnancy panel because I didn't know then I was miscarrying and she was doing regular booking in bloodwork

 

[ginny83]

Sorry, I haven't been on here much lately - just very busy with uni stuff

I will try and get on tomorrow and see if I can help NDH.. what state are you in? PM me

 

[ginny83]

my FS is located in melbourne - I think he is amazing and 100% the reason I got my rainbow baby. My history is 1st pregnancy all normal, then I had 2 missed miscarriages at 12 & 16 weeks, then a early natural loss, then another loss at 14 weeks. Now I have an almost 5 month old rainbow baby -honestly felt like it was never going to happen some days!

all my results have always comes back fine - except with my current FS he tested me for NK cell via a biopsy and it came back positive. With a previous FS they had tested me via a blood test and it came back negative so was only even clexane and aspirin and that ended in y last loss the 14 week one.
This time I was on clexane, steroids,aspirin, intralipids transfusions, progesterone, estrogen, vit d. On top of all that I have a secondary issue of high blood pressure, which has never been blamed for my miscarriages since its always been controlled, but it can cause it's own pregnancy complications - with my rainbow baby I developed post partum pre eclampsia!

Happy to chat with anyone about any of this - but just dont get on here as much as I use to so might get back to you quicker if you PM me

 

[NDH]

Thanks Ginny. I'm regional NSW and we don't have private health care so I really don't have many options atm as DH is on Austudy so we aren't in a financial situation to pursue any further testing right now.
Going to have to see how I get on with dietary changes and baby aspirin for now until we're in a better place financially.

 

[ginny83]

It doesn't have to cost that much. Nearly all of my testing was done through the recurrent miscarriage clinic and because that's in a hospital it's covered 100% by medicare. Might be worth looking to see if there is one in Syndey.

I took these results to my FS and he only needed a few extra tests to be done. I really think getting the nk cells test is vital if everything else is showing up normal. the tests and even the consultations really didnt cost that much- but the treatments once i was pregnant werent cheap. however at least I could plan for that. plus with most of the pregnancies that I lost I had made to the 12 week stage where I was paying for the 12 week blood tests and ultrasound. So either way if I was going to keep ttc it was going to cost me financially in some way

Good luck with it all x

 

[NDH]

Thanks . Its good to hear there are places that are doing NK cell testing in Australia if it comes to it. I'm about 5+ hours from Sydney so it would be a huge financial commitment to get any testing done, but if I don't have any luck we'll have to figure out something. DH may end up in Sydney for work a couple years down the track.

Currently though I just have access to some very unhelpful GPs, a small base hospital and just 2 gynecologists in town...

 

[ginny83]

I know of 2 FS in Sydney that do NK testing - anyone in the public system won't though. Some drs will be openly against it which can be hard to deal with as well. It's a minefield of different opinions unfortunately. I now have 100% faith in my current FS and only go by what he says.

I can imagine it would be very tough in regional places I know a few IVF ladies who struggled with the distance. Even the FS I see in Melb is easily 1.5 hours away from me. I had to go see him about 6 times during the 1st tri to get the intralipids administered. but no other choice - I think there are only a few FS in Australia that offer it.

 

[Ellsi]

Hi ladies, I'm new to this site so if im posting in the wrong place Pls let me know!
I have a healthy 2 year old daughter, and for the past year and a half TTC #2.
I've had 4 miscarriages since my daughter was born all ending fairly early in week 5 or 6.
They've done every test possible including HSG and loss panel, but all they found (which I found strange) is a low ovarian reserve. I'm 33 years old, this is not normal for my age but happens to a small percentage of women.
I get pregnant every time which is the part i don't get
They've started me on Femara 5mg and asprin even tho nothing in blood work suggests I should take it.

Anyone go through something similar?
Thx ladies

 

[Camichelle]

Hi Ellsi. Sorry for your losses. My story is similar. I'm also 33 and have one healthy child. Since trying for number 2 I've had 6 losses averaging around the 5-6 week mark. I also had hsg, ultrasound, shg, and standard recurrent miscarriage panel and nothing abnormal was found until I went to a reproductive endocrinologist and was diagnosed with mthfr. I don't know too much about it since I only found out about it in last 2 weeks but from what I have found it causes many women miscarriages right around the 5-6 week mark. Might be worth asking about.

 

[dairymomma]

Ellsi-I'm not much for the diminished ovarian reserve stuff but I do know that recurrent early losses like that can be due to progesterone deficiency or progesterone levels dropping too early and going on the femara may be the best thing to help with that. Aspirin is kind of a catch-all for some drs and I've been on it for all three of my rainbow babies even though my clotting testing came back negative. I was told that progesterone supplements can sometimes thicken the blood a bit so some drs will put you on it for that reason, other drs will just put you on it because for some women, it does seem to help.

My story is 10 miscarriages, 11 angels, and 3 rainbows despite it all. I've had lots of testing done but everything has come back normal thus far aside from progesterone levels being low until my last two pgs-which I mc anyway. However, we're looking at hyperfertility now as I've been getting pg faster each time (like 'no period after a loss because I get pg' fast).

 

[Cameliaa]

Hi ladies! I am so sorry for your losses.

I am undergoing my 2nd MC at 8 weeks, just learned it yesterday. My 1st MC was also last year in June - it was discovered at 12 weeks, but it had ended at about 8 weeks.

I have 2 healthy boys. My last healthy pregnancy was a long time ago though, exactly 10 years ago.

I have done all tests possible and found that I have MTHR heterozygous and a bit elevated homocystein level (less than 1 point). I was taking baby aspirin and extra folic acid during this pregnancy, however several doctors here think that my MCs have nothing to do with the MTHR thing as I have 2 healthy boys and never had any clotting disorders.

Since my husband didn't do any testing, he will be undergoing tests now to see if there might be a problem. At this point I really don't see myself TTC again soon, although my dream has always been three or four children. I now have 2 children and 2 angels. I feel bad that I might be to old now to have a healthy pregnancy (I am 38, my husband is much older). Why did we think we have all the time in the world?

 

[Camichelle]

Sorry for your losses cameliaa.

I was also diagnosed with mthfr (homozygous) with extra folic acid and baby aspirin but docs and myself felt there had to be more to it after 6 losses. Finally got hubby tested and turns out it was him. He has a balanced translocation of chromosomes so very high odds of miscarriage every time. Idk if we'll ever get our rainbow but I'm blessed with a perfect ds and I'm sure you feel the same about your 2!

 

[Cameliaa]

Sorry for your losses cameliaa.

I was also diagnosed with mthfr (homozygous) with extra folic acid and baby aspirin but docs and myself felt there had to be more to it after 6 losses. Finally got hubby tested and turns out it was him. He has a balanced translocation of chromosomes so very high odds of miscarriage every time. Idk if we'll ever get our rainbow but I'm blessed with a perfect ds and I'm sure you feel the same about your 2!

Thanks Camichelle! I am quite new to this site, does "ds" stand for son or daugther? I am truly happy for every child we have. I am certainly blessed and thankful for my boys. I was always very much looking forward to having another baby, but it never (until last year) occurred to me that it may be too late for us.

Thanks also for sharing your story. My doctors thought my MTHR heterozygous have nothing to do with my MCs, but who knows really? Both MC happened at 8 week and here they don't do tests on baby at such an early stage to find out if that was chromosomal defect or clotting. They even said that it cannot be identified. It is difficult that I would not be able to learn the real reasons. But my hubby will get tested and if he gets negative results, at least there is some answer.

Can your husband be somehow treated to improve chances to get to a healthy pregnancy?

 

[Camichelle]

DS is dear son, DD is dear daughter 😊

Our first pregnancy was smooth so I never dreamed we'd have problems having more. I always wanted 3 now I'm just praying for 1 more!

For the mthfr were you prescribed folic acid or folate? There's a big debate apparently about what form we should have.

As far as hubby's chromosomes, there is nothing that can be done. Options are to keep trying In hopes we get lucky again, sperm donor, or ivf but for now we're just going to keep trying.

Really hope you get a rainbow!!!!