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New forum member - TTC and MTHFR

Hi All,

I am very pleased to find this forum and all of the resources up on it :)

I was diagnosed with MTHFR homozygous mutation with elevated homocysteine levels when I had a blood clot (DVT) last year. My husband and I are currently trying to conceive our first child. I also have PCOS and was not ovulating on my own. I am on my second cycle of Clomid and have ovulated both cycles. Yay! It's too early to tell if the 2nd cycle worked - I'm on cycle day 22.

My OB had me see a cardiologist before we began TTC due to my DVT. I don't think my OB knew much about MTHFR mutations. The cardiologist put me on 5mg of folic acid and said that after I became pregnant he would put me on Lovenox from weeks 4-6 until about week 36 and would then switch me to Heparin. He also said that if I went on any type of blood thinners or anti-coagulants while TTC that an egg would not be able to implant - which seems in line with another post that I read in this forum - really not sure where he got this? He did not indicate that it would have any impact whatsoever on us trying to conceive or the health of a future baby so I didn't really think anything more about it until several days ago when I accidentally came upon some information in a pregnancy/conception forum I belong to.

So, I'm very happy to find this information - thank you Sandi - and other forum members. I am an American living in Australia and have found the hard way that the medical system here is rather passive and conservative.

I am struggling to find a doctor in Sydney that specializes in MTHFR - but I've only just begun my search. By a happy coincidence I have waited for four and half months to get in to see a top local OB and my appointment is Wednesday, so I'm hoping that he'll be able to provide a bit more support. In the meantime, I'll look at getting some B6/B12 supplements.

I feel a bit stressed as I don't seem to ovulate without Clomid and the average ovaries can only take about 6 cycles of Clomid at a time. So, if I can't fall and stay pregnant within the next four cycles I'll have the option of taking a several month break (which seems like an unbelievably long time) or looking at IUI/IVF options.

I have a happy afternoon of reading ahead of me and then will probably try to get a few tips from you all before my OB appointment this week :)

Sandi - good luck with your ultrasound results!
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1227139 tn?1462334630
Thanks so much Windupbird!  

I thought for a long time that no one in the medical world would be able to figure out what the heck was wrong with me and it seemed that so much was out there but none of it pertained to me.  When I finally did some reading on this site of others who had very similar sounding stories to my own, I realized on commonality and that was MTHFR!  The sad thing is, like I stress so often, many doctors don't seem to agree with the fact that it either causes health issues or recurrent pregnancy loss or problems with conception.

I don't have medical proof of this (other then what I have been told from my doctors) but if you have clotting issues such as myself and you as well, it would definitely cause implantation issues and it was one OB who actually told me that I might have to take Lovenox in order to conceive.  Now, if you are lucky enough - as I was, I was able to do all the research and present it to my own MD who allowed me to go onto Lovenox and co-incidentally the next week of my appointment I learned I was indeed pregnant once again (after loosing 3 in a row before that.)  So I was in desperate need to ensure that I was given the Lovenox right away, because I knew how soon I could lose the pregnancy  - by my first expected period.  So due to my learning early that I was indeed pregnant, and though I could not get the specialist appointment immediately I did get the prescription for the Lovenox from my own MD.  It is kind of silly when you think about it, all my specialist appointments occurred well after the risky period.  OUr system here  in Canada is much like Australia and even more complicated by free health care which prevents or tries to prevent unnecessary doctors visits by making many pregnant women (even in the high risk category) wait until at least 8 weeks along or after a confirmed viable ultrasound scan.  This was the criteria for my Special Risk high risk pregnancy clinic at Mount Sinai hospital.  Now how that makes any sense to me, is beyond me.  I took matters into my own hands and had I not, I know I would have likely lost a 4th pregnancy.  I do believe with having Compound Heterozygous MTHFR (two variants - C677T and A1298C both) it would have caused yet another loss, clot possibly in the early developing placenta or implantation failure.

Now as far as prescriptions, I knew before hand also to take high levels of Folic Acid.  This is a must especially if you have high homocysteine levels.  Also a high complex of Vitamin B's.  I take a prescription for PregVit, which is a high level Folic Acid prenatal vitamin by prescription which includes all the prenatal vitamins and the 200 times amount of Folic Acid which you need being MTHFR.  These were musts for me for conception.  ALSO, I was instructed to take Baby Aspirin which helped as a blood thinner and I also learned I must take this regardless of pregnancy just because of the MTHFR.  It is a smaller not as effective version of a blood thinner which is now medically indicated in Canada for any person who is over 40, just as a preventative for a healthy heart.  Anyone can take it, not just heart patients.  So with my doctors knowledge, this "cocktail" I know helped me to conceive.

My OB had told me, if I had not conceived after those losses again, she would have started me back on Clomid and hCG shots which I had tried in the past six months after my sons birth in order to force ovulation.  That reason was kind of different then most people in that I was not ovulating on my own because of a pituitary tumour that required a medication I could not take while breastfeeding.  But the Clomid and hCG shots did work to get me to ovulate, so perhaps you will get there without all these medication ideas.  I would say after three months of Clomid though, you should definitely ask about these ideas that we are mentioning.  They have said that women should not do more then 3-6 round of Clomid consecutively.

I hope this helps you, and if anything I can pass on - persevere.  Never give up and do your research and bring it with you.  Don't be afraid to show your doctors what you find.  While many don't always appreciate patients bringing in medical information - the ones open to learning and your help will.  Mine is living proof of that.  If they feel they can't learn then they shouldn't be doctors as far as I am concerned.  They don't come programed with all the knowledge there is, especially when genetics is such a new area, and MTHFR is in that same area.   Please let me know if there is anything additional I can provide.  I have tons of research (medical studies etc) on the topic that I gave to my doctors if you need them.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
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Avatar universal
Hi prayingforpatience,

Thanks so much for your reply. I'll look up the Metanx and some info on Femara. All the best with your pregnancy.
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977943 tn?1302255020
Good luck to you on this cycle.  I couldn't take clomid because of side effects.  My RE had me take Femara which worked just as well for me.  I'm sure there are other fertility drugs out there as well so you wouldn't have to take such a long break after clomid.

Also, I take Metanx which is Folic Acid/B6/B12 all in one pill.  I haven't seen too many other people on it here, but it seems to be working for me.  I had two m/c in 2010 before I started taking it.  I am now 25 weeks and everything is going perfectly.  I'm sure others on here can give you some other med advice to ask your doctor about as well.
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