Reply
 
LinkBack Thread Tools Search this Thread
Old Apr 18th, 2017, 16:42 PM   23301
dairymomma
Other
BnB Addict
 
Join Date: Mar 2011
Posts: 6,041
Katbar-I have the C677T mutation (homozygous) and my OB doesn't think it's my issue. Despite 11 losses and recurrent bleeds in the first trimesters of nearly all of my pregnancies, he doesn't think it's my issue. Yet when I brought it up to the hematologist I was referred to (I asked for the referral because we'd long suspected an unknown clotting or autoimmune issue was at play but my tests were all coming back normal), he said it was 100% certainly, definitely, positively my issue.

I've been on high dose folate either just before or during all of my rainbow pregnancies though (I have three rainbows and I'm expecting #4 due this fall) and I haven't carried to term without it so I'm a believer.

I may have the C mutation but my husband is homozygous for the A mutation. I did ask the hematologist if this was detrimental for my DH and he said it wasn't. Our kids, however, need to be on a multi-vitamin for life (according to him) because they have one bad copy of each gene.

And most recently, I saw something about how the A mutation can also cause folate issues though it's not as well studied or as well known as the C mutation is. So the moral of my story, I guess is that it just depends on who you talk to.

As for your current situation, MTHFR could have a role in it and it may just be that you had the bad luck of having bad luck. It could be that there is something else going on too-high NK cells or a slight hormone imbalance or a bad egg being fertilized or what have you. It's so hard to know because there are so many unknowns. But if it's the MTHFR that you are most concerned about, I'd suggest asking if you could take a low dose blood thinner (baby aspirin is what I take) daily when pregnant and take a good quality, high dose folate supplement with methylfolate in it. With MTHFR, you can't take just any folate. You need the right form of it for your body to be able to use it. 5-methylfolate is the proper form and if you can find a supplement with methylcobalamine in it, that wouldn't hurt either.

If you want info on MTHFR and what it can do to the body, look up MTHFR.net. I've found alot of good info on there.



Status: Offline
 
Old Apr 18th, 2017, 22:10 PM   23302
KatBar
Mum (Mom)
Chat Happy BnB Member
 
 
Join Date: Sep 2013
Location: Victoria, Australia
Posts: 1,055
Thanks Dairymomma! That's really interesting to hear all that, and hear about your experience. I am glad you have 3 rainbows and other on the way .

I do know that the A gene mutation does affect folate asorbtion, just not as greatly as the C gene mutation (according to what I've read, with a C gene mutation, you only absorb around 20-30% of what you need, and with the A gene mutation, you only absorb 60-70% of what you need). I am homozygous as well.

I've been on a dose of MethylFolate (L-5 MTHF) for a year now, although I am not sure how high the dose is.. maybe it could be increased.. However, I wasn't aware of this issue, or taking MethylFolate, when I got pregnanct with my son... so who knows - like you say, so many unknowns.

I have my follow up in a weeks time with my IVF doctor, and I know I'll get back the results of all my blood testing (which did look at blood clotting, and autoimmune system etc), so I might mention about the baby aspirin and see what he thinks.. He did already say that he would put me on it, if my blood work came back showing I needed it. I am iffy on how accurate the blood work will be though, as I saw someone saying about how it can be inaccurate if you are pregnant at the time (& I did the blood tests just before my D&C).

Anyway, thanks again. It's comforting at least, to be able to come on here and chat with you all!



Status: Offline
 
Old Jun 11th, 2017, 08:50 AM   23303
Trying4first1
Trying to conceive (TTC)
Chat Happy BnB Member
 
 
Join Date: Jan 2015
Location: UK
Posts: 1,656
Hi ladies
After 4 MC and almost 3 years TTC we finally have some answers!
I have been diagnosed with a borderline clotting disorder by St Mary's in London, which will be treated with Clexane from BFP throughout all of pregnancy if I go full term.
I have also been diagnosed with High Nk cells by Coventry. I will be given steroids from BFP until 12 weeks. They have also been prescribed progesterone to take each cycle from CD 22 for 7 days for the next 3 cycles. If I don't get pregnant in that time Will just need to take from next BFP. I will need to take this up until 12 weeks.
I am booked in for a hysteroscopy in September under general to check for scarring and to have it removed if any. We have been told to TTC in the meantime as the surgery might but be needed but have been told to go for it incase if we are not pregnant by then.
We are only in our second month TTC again and I know it can take a longggg time so I am expecting to be going for surgery, which I am OK about.
Has anyone had a similar diagnosis?



Status: Offline
 
Old Jun 12th, 2017, 00:10 AM   23304
aidensxmomma
Mum (Mom)
BnB Addict
 
 
Join Date: May 2008
Location: Wisconsin, U.S.
Posts: 5,260
Hi ladies! I hope it's okay for me to join you all I'm very sorry for all of your losses

I kind of just feel like I need to tell my story because right now I feel so, so alone. I am currently going through my 6th early miscarriage. This one was at 4+1 weeks along. DH and I have gone through 4 other losses - April 2017, September 2015, June 2015, and August 2014. I had one other loss with my ex back in 2009 as well. None of my angel pregnancies have made it past 5 weeks.

DH and I have one DS together - he was born in August 2016. I also have a 9yo DS, a 7.5yo DD, and an angel DD who would be 5yo (I lost her to SIDS in 2012).

Since having my older three kids, I've been diagnosed with endometriosis, PCOS (although the only real symptom I seem to have is cysts on my ovaries), adenomyosis, borderline hypothyroidism, and low vitamin D. My doctor rechecked my thyroid levels in April and they seemed to be okay, but I don't feel confident about it for some reason.

I go back to see my OBGYN on Wednesday to talk about my losses and possible tests/treatments. Also, I'll have to get my hcg levels checked again to make sure they went back to zero. On one hand, I'm really dreading this appointment. On the other hand, I'm looking forward to hopefully finding some answers and maybe preventing more losses in the future; at the very least, I'd like to lower the chances.

Most of my friends/family have no idea what DH and I have been going through. I haven't really told anyone about the pregnancies or talked to anyone about them. So it's been really isolating to go through. And, truthfully, I'm really upset and angry. Not really at anyone; just that it keeps happening. I already feel really defeated because I have problems ovulating and then when I do finally get pregnant, I end up losing the babies I just turned 26 and it's so upsetting to me that I'm going through all this and have lost so many. I know that sounds so bad. I just feel very lost and disheartened.

I'm sorry for the vent and long post. But at least it feels a little better getting it all out.



Status: Offline
 
Old Jun 12th, 2017, 21:40 PM   23305
dairymomma
Other
BnB Addict
 
Join Date: Mar 2011
Posts: 6,041
aidensxmomma-I'm so sorry for your losses and that you find yourself here. And unfortunately, this thread tends to go silent here and there but hopefully some other ladies will pop in with some advice. As for me, my best advice is to ask about progesterone supplementation. Early losses, especially recurrent chemical pgs, can be a sign that your progesterone is very low and/or not rising like it should and supplementation is the best treatment for that. Also, have you had your TSH checked or did they do a full thyroid panel? You can have a 'normal' TSH but have a wonky T3 or free T4 which can throw things off.

Sorry I'm not much help otherwise. I know there are other things you can get tested for like high NK cells and MTHFR and other clotting or autoimmune disorders but I would first look into the most obvious things that you already know of-PCOS, endo, and thyroid trouble all mess with hormone levels and it may be as simple as taking a progesterone supplement in your case.



Status: Offline
 
Old Jun 13th, 2017, 00:01 AM   23306
Sweetkat
Mum (Mom)
Chat Happy BnB Member
 
Join Date: Dec 2012
Posts: 1,420
Quote:
Originally Posted by Trying4first1 View Post
Hi ladies
After 4 MC and almost 3 years TTC we finally have some answers!
I have been diagnosed with a borderline clotting disorder by St Mary's in London, which will be treated with Clexane from BFP throughout all of pregnancy if I go full term.
I have also been diagnosed with High Nk cells by Coventry. I will be given steroids from BFP until 12 weeks. They have also been prescribed progesterone to take each cycle from CD 22 for 7 days for the next 3 cycles. If I don't get pregnant in that time Will just need to take from next BFP. I will need to take this up until 12 weeks.
I am booked in for a hysteroscopy in September under general to check for scarring and to have it removed if any. We have been told to TTC in the meantime as the surgery might but be needed but have been told to go for it incase if we are not pregnant by then.
We are only in our second month TTC again and I know it can take a longggg time so I am expecting to be going for surgery, which I am OK about.
Has anyone had a similar diagnosis?
Trying4First - it's good you have answers! I have also been diagnosed with slightly elevated NK cells and now am nearly 4 weeks pregnant. I wonder whether I should ask for steroids???

My losses were however chromosomal and that is nothing to do with NK cells and also I had DD without taking anything for NK cells.

I might give the dr I saw a call (he was at the Lister).

I hope you get your rainbow very soon



Status: Offline
 
Old Jun 14th, 2017, 14:36 PM   23307
Trying4first1
Trying to conceive (TTC)
Chat Happy BnB Member
 
 
Join Date: Jan 2015
Location: UK
Posts: 1,656
Quote:
Originally Posted by Sweetkat View Post
Quote:
Originally Posted by Trying4first1 View Post
Hi ladies
After 4 MC and almost 3 years TTC we finally have some answers!
I have been diagnosed with a borderline clotting disorder by St Mary's in London, which will be treated with Clexane from BFP throughout all of pregnancy if I go full term.
I have also been diagnosed with High Nk cells by Coventry. I will be given steroids from BFP until 12 weeks. They have also been prescribed progesterone to take each cycle from CD 22 for 7 days for the next 3 cycles. If I don't get pregnant in that time Will just need to take from next BFP. I will need to take this up until 12 weeks.
I am booked in for a hysteroscopy in September under general to check for scarring and to have it removed if any. We have been told to TTC in the meantime as the surgery might but be needed but have been told to go for it incase if we are not pregnant by then.
We are only in our second month TTC again and I know it can take a longggg time so I am expecting to be going for surgery, which I am OK about.
Has anyone had a similar diagnosis?
Trying4First - it's good you have answers! I have also been diagnosed with slightly elevated NK cells and now am nearly 4 weeks pregnant. I wonder whether I should ask for steroids???

My losses were however chromosomal and that is nothing to do with NK cells and also I had DD without taking anything for NK cells.

I might give the dr I saw a call (he was at the Lister).

I hope you get your rainbow very soon
Thank you Sweetkat and congrats on your pregnancy 😊
I think it's worth an ask to be on the safe side.
Your daughter may have been conceived on a cycle where you NK cells levels were low meaning all was ok. At Coventry they told me that they can vary from cycle to cycle. My first result came back normal and he second was high. Which is why they now do 2 endometrial biopsies



Status: Offline
 
Old Jun 18th, 2017, 17:00 PM   23308
Buttons_01
Pregnant (Expecting)
Active BnB Member
 
 
Join Date: Sep 2013
Location: Cheshire, England
Posts: 235
Not really sure whether to post on here or not because as of late it doesn't seem like I have a problem getting pregnant, it's staying pregnant. I'm 22 years old & have a son who will be 3 in July. I'm currently going through my 3rd loss In a row, passed baby today. Obviously I haven't had any tests done to find out why I keep losing them but now that I'm sadly onto my 3rd loss, I hope I will be able to have some tests done and finally get answers as to why I can't seem to keep hold of my babies. I think it's absolutely heartbreaking that they make women suffer through 3 losses or more before even looking into why it's happening! .. I don't even know if I want to even try and have another baby after these 3 losses. This loss has got to me the most and I haven't really taken it very well and have just cried, which isn't really good when I have my son to look after and concentrate on. Hopefully I will be able to get some testinng done and then don't go on age because yes I am young and may have plenty of time ahead of me but I have suffered through 3 losses and I need to know why! x



Status: Offline
 
Old Jun 18th, 2017, 19:01 PM   23309
aidensxmomma
Mum (Mom)
BnB Addict
 
 
Join Date: May 2008
Location: Wisconsin, U.S.
Posts: 5,260
Quote:
Originally Posted by dairymomma View Post
aidensxmomma-I'm so sorry for your losses and that you find yourself here. And unfortunately, this thread tends to go silent here and there but hopefully some other ladies will pop in with some advice. As for me, my best advice is to ask about progesterone supplementation. Early losses, especially recurrent chemical pgs, can be a sign that your progesterone is very low and/or not rising like it should and supplementation is the best treatment for that. Also, have you had your TSH checked or did they do a full thyroid panel? You can have a 'normal' TSH but have a wonky T3 or free T4 which can throw things off.

Sorry I'm not much help otherwise. I know there are other things you can get tested for like high NK cells and MTHFR and other clotting or autoimmune disorders but I would first look into the most obvious things that you already know of-PCOS, endo, and thyroid trouble all mess with hormone levels and it may be as simple as taking a progesterone supplement in your case.
Thank you

I did go to my doctor to talk to him about the losses. He decided that it's not worth doing a lot of testing at this point, but he will give me progesterone for my next pregnancy. So I guess we will see how that goes and take it from there. I'm glad to have a plan at least.

Quote:
Originally Posted by Buttons_01 View Post
Not really sure whether to post on here or not because as of late it doesn't seem like I have a problem getting pregnant, it's staying pregnant. I'm 22 years old & have a son who will be 3 in July. I'm currently going through my 3rd loss In a row, passed baby today. Obviously I haven't had any tests done to find out why I keep losing them but now that I'm sadly onto my 3rd loss, I hope I will be able to have some tests done and finally get answers as to why I can't seem to keep hold of my babies. I think it's absolutely heartbreaking that they make women suffer through 3 losses or more before even looking into why it's happening! .. I don't even know if I want to even try and have another baby after these 3 losses. This loss has got to me the most and I haven't really taken it very well and have just cried, which isn't really good when I have my son to look after and concentrate on. Hopefully I will be able to get some testinng done and then don't go on age because yes I am young and may have plenty of time ahead of me but I have suffered through 3 losses and I need to know why! x
I'm sorry for you losses and that you find yourself here. I can completely understand your frustration with having to have three losses and with doctors brushing you off because of your age. I'm 26, so not much older, and I've been fighting with doctors for years to take my concerns seriously. I have finally found a good doctor now, but I went through a lot of bad ones first, unfortunately. They wouldn't look into anything because I was young and because I already had kids. Keep trying to find a good doctor who will listen and investigate and now dwell on you age. Also, be gentle on yourself. Going through a loss is hard. Doing it while taking care of other kids is even harder. Try to find the time you need to take for yourself (easier said than done, I know). And don't make any major life decisions right now regarding trying again. The emotions are all still fresh and raw and it's hard to make an informed decision when we're in the middle of things. I said the same thing after my most recent loss and even told my husband that if he wanted to divorce me and find a wife who could carry his kids (my youngest is ours together; my older ones are from my first marriage), I would understand and not hold it against him. But after giving it a little time, I know in my heart that I want to keep trying and in the end, it'll be worth all the pain to get there. (I hope that all came out right). Once again, I'm so sorry for your losses and I hope that you're able to get the testing done to get some answers.



Status: Offline
 

SEO by vBSEO