Before trying to get pregnant I would have thought I was the picture of health. Rarely ill with ailments like the common cold, my only main complaint was my hypothyroidism, which I thought was being managed properly until earlier this year. That’s the thing about being young: usually our bodies are resilient and even if we have unknown issues like MTHFR happening in the background, toxins build up silently and physical symptoms sometimes don’t present until later in life.

reproduction

 

Trying to get pregnant brought many health issues to my attention and led me to the discovery of my genetic issue and also the fact that my body wasn’t converting the T4 I was taking into T3, which is an essential process for those taking only T4 thyroid medication like Synthroid or Levothyroxine. When doctors say that birth control pills, which I took for almost a decade, mask underlying problems, I never thought that would apply to me. Of course, having MTHFR meant that I never should have taken hormonal birth control to begin with. File under lessons learned too late.

The start of this year was tremendously difficult and physically and emotionally draining. After trying for months to get pregnant I had a very early miscarriage in February. It was so early that we didn’t even tell our families about it (if you’re reading, sorry everyone). The emotions were mixed. We were elated that we could actually become pregnant, yet terribly sad that we were going to have to wait longer to become parents. We toyed with the idea of trying again right away but I wanted to get my thyroid in order. As we were living overseas at the time as expats, this was very difficult. The Norwegian healthcare system can be difficult to navigate and I couldn’t even get the medication I needed over there.

Around late March I had some strange symptoms that came on suddenly. My body felt overloaded and I have come to learn that all the folic acid and unmethylated B vitamins I had been taking for over a year under the advice of pregnancy books and websites was a likely cause of the strain on my system. I can pretty much separate my life into pre-February 2013 and post-February 2013. Following the miscarriage I have been struggling with side effects: anemia, tinnitus, headaches and intermittent fatigue.

Luckily we were moving to the United States to live and I could investigate my health issues further. I found out about my MTHFR about six weeks after our move. Of course, the move itself was full of angst and stress: I think events unfolded like toppling dominoes, one stressful event crashed into the next one and now my body is desperately trying to recover. My first choice of doctors here was an awful one, so I’ve been delayed a couple of months in getting to the bottom of my issues.

This week I finally saw two new doctors who are some of the best in our local area. The wait was worth it. I have made complaints about doctors before on this blog and I still think the truly good ones are few and far between. I blame the entire healthcare system, which is broken. But when I find doctors who are obviously dedicating their lives to their work and have bravely pushed the boundaries when it comes to the exceptional care of their patients, I’ll be the first to sing their praises. My new endocrinologist was fully knowledgeable about my thyroid issues and even took the MTHFR seriously, referring me to a maternal fetal medicine specialist who I will see for a pre-pregnancy consult in a few weeks. She is running more tests, including a saliva cortisol test just to rule out adrenal issues. I also have a new internal medicine doctor who is fully knowledgeable about MTHFR. She treats fibromyalgia patients routinely and knew exactly what to do with me. That is such a relief.

I am now waiting on the results of testing for iodine, histamines, MMA, Epstein Barr Virus, Lyme disease, neopterin and glutathione, along with the Spectracell comprehensive micronutrient panel. I am still also waiting for the results of a my cellular stress assessment that was done a few weeks ago by a research clinic – this tests for cell responses, fungus, chemicals, pesticides, heavy metals, radiation, bacteria, parasites, viruses, nutritional deficiencies, food and environmental stress, pharmaceutical metabolites, phenolics, mycotoxins, gmo toxins and zoonosis. I believe the test is for something like 27,000 different elements that can be silently wreaking havoc in your body. I’m very thorough – I want to know everything and I want to take action. I know miscarriages can’t always be prevented but I’m determined to do whatever I can to ensure that our next efforts aren’t in vain.

So we’ve put TTC on ice for the time being. Fertility specialist, Iva Keene, recommends 120 days of any new health regimen to allow time for your body to heal. My acupuncturist concurred that it can be better to wait sometimes for the effects of a new diet and lifestyle to effect improvements to the reproductive system. She is also working on my hormonal imbalances. When I went to see a reproductive endocrinologist (more on that next week), she was quite aggressive about rushing me into doing something immediately. It felt like she was trying to scare me into pharmaceutical fertility treatments and to be hasty about it (I’m not getting any younger!) As you may have noticed I’m more inclined to natural medicine. If I don’t have to intervene with drugs I won’t. And given the genetic issues and autism risks, I will wait as long as I have to if it means giving my child the best possible chance in life.

But waiting is hard! I had hoped we could start trying again by November but this round of testing will tell. It could be longer, which is not ideal for us but what can we do? I’ll be sharing all my test results and options the doctors give us on this site. If you’re going through something similar, I’d love to hear your story!

If you have a comment that is related to your own health or have questions that require an answer, please leave these in the community discussion forums and not in the comments below. Thanks! =)

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15 thoughts on “Why We’re Waiting To Try To Conceive Again

  1. Shelly

    Hi again – thanks for forwarding my comment to this section. I am copying here so I can join this conversation. Also Andrea, in addition to my low adrenals/mood, I also have chronic tinnitus and felt it may be connected to this mutation? Any ear improvement since you have treated this?
    I am pretty new to the MTHFR and diagnosed 2 months ago so far heterozygous for C677T. I just ordered the 23 and Me test yesterday. I miscarried at 2 months this April and am sure it was due to my absorption issues and this mutation. I had been spotting for 2 weeks when I miscarried. I am sure my mom had this problem too as she had preclamspia and I had to be induced 6 weeks early. After reading on all the associated risks with this mutation, I now wonder if her cancer was connected to this defect also. Probably so…I have been on 5mg of MTHFR for 3 months (before my test as my naturopath saw the potential diagnosis in my blood work). I do not feel any better yet on the pure folate, low adrenals, low mood and increasingly difficult to exercise. My question is how to best prepare for my next pregnancy. I am pretty concerned about trying again as this is all new to me. I am feeling pretty overwhelmed by what I read and the lack of doctors who are familiar with this. I live in NYC and am struggling to feel better and a good support team. Any feedback is greatly appreciated! Thanks!

    Reply

  2. Emily Bradley

    I just wanted to let you know that I came across your blog after my second miscarriage. And something told me I hate the mthfr mutation based on what you had written. I took your tips and used 23andme to confirm that I had the double negative mutation. A blood test confirmed that the homocysteine level was very high. After adjusting my diet and changing to all natural/organic supplements – I am currently 25 weeks pregnant with – what I’ve been told – is a healthy boy! Everyone asks how I figured this out and I owe a lot of it to you and your blog. I know this will be a lifelong battle, but being able to manage the diet seems to have helped me so much. Thank you again, I am so grateful to have found this information and been able to sustain our third pregnancy!

    Reply

    1. Andrea Post author

      Thank you for sharing that wonderful story, Emily and congrats! I love hearing from people who have been helped by the information

      Reply

  3. Heather

    Can you please update me on your story? I see this was 2.5 years ago now. going through such a similar thing right now. Had my second miscarriage just over a month ago and am trying to sort through everything before TTC again. At the same time, I’m almost 33 and feel I’m running out of time 🙁

    Reply

  4. Ana

    Hello ladies,

    Three years ago today I had my first miscarriage. We were expecting twins and excited as could be when we saw them but very shortly devastated as they only found one heart beat. Hours after my appointment I was devastated as I began to bleed heavily and I knew that baby #2 was also gone. Ten months later we were going thru yet another loss. It was so devastating I felt like such a failure I couldn’t believe that I could not have a baby, how could this happen to me?! After demanding a very comprehensive exam of both my husband and I we found 2 copies of MTHFR mutation. I was so overwhelmed but it explained everything: my insane cholesterol levels that weighing 105 lbs I had since I was 12! My hypothyroidism, the migraines, the loses of my angels. My doctor recommended we wait 3 months and we started trying again. She put me on levothyroxine, deplin (L-methylfolate), 81 mg of aspirin, prenatal vitamins, and progesterone. It was a rough pregnancy I had a UTI the entire time and the worse morning sickness until week 30, but it was worth it! I have a beautiful healthy 8 mo old boy and he is my world. Hang in there and be patient, I know how you feel but there is a lot of hope for you. I always liked reading the good stories whenever I would spend entire nights doing research that’s why I wanted to share my story with you 😉

    Reply

    1. Andrea Post author

      Thank you so much for sharing your story, Ana! I’m so happy to hear the news of your son. I actually became pregnant in March and am almost four months along now – I just haven’t made a big blog announcement yet (I am still a little nervous). Fingers crossed all continues to go well. All the best to you and your family =)

      Reply

      1. Tanya

        Andrea
        We’re you put on aspirin when you learned of your MTHFR? Did you take during pregnancy and do you take now after pregnancy ?
        Thanks !!

        Reply

    2. Lizzie

      Congratulations on your wonderful news. Since you mentioned your husband had MTHFR too, did he get prescribed anything?
      We have frozen embryo’s ready to go for our next IVF cycle after a 10 week miscarriage after our first one, so I was wondering if we will need to go through everything again if my husband is also detected with it.
      Thank you
      Lisel

      Reply

  5. Elaine Moore

    Andrea, thank you so much for sharing your journey and investing the time and so much more to have this website : )

    Much like you, last February I also had a miscarriage 6wks into our pregnancy. A month and a half later I got pregnant again; I found out the morning I had an appointment with an obgyn. She found I had low levels of progesterone and put me on it, but I still miscarried at 5wks. After this miscarriage she ran various tests and found that I am heterozygous for the C677T mutation and also found my results on the Anti-Thrombin III Assay were just outside of the normal range. The way she explained it to us was that there’s nothing really to worry about; I just had to take this special prenatal vitamin and a baby aspirin everyday – which I did.

    Then 8mo later I got pregnant again. This time I was seeing another obgyn who I had wanted to see upon moving to Nevada. He also found my progesterone levels were low and I began to take it. Levels were going up, but I still miscarried at 7wks. In addition to confirming what the previous obgyn found, he also found my progesterone levels are normally low and I have a break on chromosome 5 and 6. He has referred us to a geneticist and informed us that with such patients using an egg donor and adoption are likely paths to go down. My husband and I’s hearts sank and I’ve been trying to do as much research as possible. I never really looked into the MTHFR before because the doctors never made it seem so serious, but now that I have been looking into it, I see it is – and I wonder if it had anything to do with the break in two of my chromosomes. I’m ready to make as many lifestyle changes possible so I can improve my health and hopefully the likelihood of being able to carry a healthy baby full term without having to use a donor egg.

    All that to say, I’m glad to have found some other women battling similar issues and trying to find healing and wholeness : ) hoping your families all the best!!

    Reply

    1. Andrea Post author

      I’m so, so sorry for your losses, Elaine. Have you talked to your doctor about using progesterone suppositories from around three days past ovulation throughout the first 10-12 weeks of pregnancy? Most reproductive endocrinologists will prescribe them. This could at least help you with that issue.

      I am interested in your chromosome break. Did they tell you exactly what effect that has on the proteins your DNA is making and what specific health effects that has? I don’t know anything about whether MTHFR can cause chromosome breaks but I have read that it can increase the risk of Down Syndrome, which is also genetic – perhaps there is a correlation there.

      Wishing you a lot of luck on your journey to getting healthier and I do hope you are able to achieve a natural conception. It can feel like a long road but armed with the knowledge and determination to heal oneself I believe we can achieve a lot.

      Reply

  6. Tracy

    Hello Andrea
    I am so happy to have stumbled across your blog but sad as well and so sorry to hear about your suffering. I just found out today that I am also compound heterozygous MTHFR. I did a google search and feel pretty lucky to have found the information you so kindly have shared. After three painful and devastating miscarriages, one brilliant doctor (after a few doctors who were less than average and seemed mildly interested, at best, in my issues) finally tested me for MTHFR as well as my husband because that can make a difference apparently. I am happy to have an answer and well pretty overwhelmed as well.

    I also have hypothyroidism and terrible anemia that has yet to be resolved despite consistent iron supplementation. I am hoping I will be able to heal now that I know the larger picture at hand I have nothing to add to your post except to send you a virtual hug and let you know that you are not alone. Thank you for all that you have shared and for making me feel less alone. I have yet to read everything you posted but I appreciate the time you took to share it with the world!!

    Tracy

    Reply

    1. Andrea Post author

      Aw, thank you so much, Tracy – sending you hugs right back! I hope you and your husband fall pregnant soon and that your struggles come to an end as well. Wishing you all the best…

      Reply

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