Saturday 9 May 2015

My Daily Medication - Undiagnosed Recurrent Miscarriage

So as a MTHFR homozygous C667T, undiagnosed recurrent miscarriage patient, I'm doing the following daily:
  • X1 Clexane injection
  • Woman's multi vitamin, by Thorne (L5-methylfolate on the label)
  • Liquid 5-methylfolate & vitamin B especially designed for pregnancy
  • Baby Aspirin... most doctors tell me to take this daily, yet head of the recurrent miscarriage unit in London (Dr Lesley Regan) told me not to take it. For his reason, I take a baby aspirin every second or third day.
  • Loads of other vitamins prescribed by the naturopath
  • Standard post IVF drugs (Cronone, Progynova)

Then, with my diet I do the following:
  • Avoid anything with synthetic folic acid in, this is most multivitamins (note: in Australia and New Zealand the government kindly puts it in bread)
  • Eat organic foods, especially vegetables
  • Organic house cleaners and makeup (People with MTHFR struggle to get toxins out of their body)
  • Try to avoid fish with high metal content in them (we MTHFR sufferers struggle with too much metal in our body as well)
  • I have been going hard on green vegetables, eating huge amounts of them. Need to get as much natural folate into my body as possible, because MTHFR mutation means my body only absorbs 10-20% of what it should.

Nearly all doctors I've seen over the past 8 years haven't known/explained the difference between 5- methylfolate, folate, and folic acid. That's probably 15+ doctors specializing in fertility.

Here are photos of my multivitamin with active folate and active vitamin B, so you can see what to look out for.

Multivitamin with active folate in:





Active vitamin B:









16 comments:

  1. Hi Lisa,
    My name is Paola, I am 35 and I've had 4 miscarriages in 2 years. After the second miscarriage I was told I have Compound heterozygous – one C677T and one A1298C and I was prescribed Megafol 5mg (folic acid 5 mg). After taking Megafol for 3 months, I fell pregnant again but went on to have 2 more miscarriages (I have been taking Megafol 5 for 1 year now). I wonder…is folic acid the right treatment for the MTHFR mutation I have? After these 2 years I am exhausted, mentally and physically. I would really appreciate if you could give me your advice. Many thanks, Paola.

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    1. Hi Paola, thank you so much for making contact and I'm sorry for your losses.
      Absolutely no way should you be taking folic acid. This could well be your problem.

      I was diagnosed with MTHFR 5 years ago, then they also put me onto 5mg of folic acid, but I had nothing but miscarriage after miscarriage - always very early.

      2 weeks before this pregnancy I visited a naturopath who told me folic acid was likely to be my issue, rather she said I should be on 5methylfolate (the products above have 5methylfolate in them. If you take them you don't need folic acid). After taking these I became pregnant, my body also felt SO MUCH better.

      On doing further research I found some great articles online. The end diagram on this page really helped me understand why folic acid doesn't work for us:

      http://recurrentmiscarriage2.blogspot.co.nz/2015/05/explaining-how-mthfr-fits-into.html

      In addition, these articles are really good:

      http://www.thedailybeast.com/articles/2015/05/03/is-folic-acid-poison-to-pregnant-women.html

      http://www.dietvsdisease.org/mthfr-mutation-symptoms-and-diet/

      So please stop taking folic acid, but you still need folate in your system, hence why you need 5methylfolate. I feel sure once you try thing things will change.

      I'd also recommend getting a DNA test. When I did this I learnt my body was deficient in lots of things and had to take extra vitamin supplements.

      GOOD LUCK.

      Please, please tell me how you get on, and write back with any questions or issues you may have.

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  2. Hi Lisa,

    I have just added a comment but not sure what happened it doesn't show up on the page. I will write everything again! I would like to thank you for your reply, I am glad your pregnancy is progressing as expected. Reading stories like yours gives me hope! Did you get pregnant naturally or through IVF?

    After reading your blog a month ago, I asked my IVF doctor if taking folic acid was the right treatment for me. He said he was sure that folic acid was not the cause of my miscarriages. At that time I was finishing my second IVF cycle so I continued taking folic acid. Unfortunately today I received the sad news (again) that I am not pregnant. I feel sad and frustrated, specially because the the embryo was tested (PGD) and the chromosomes were fine. I feel devastated.

    You mention you are seeing a Naturopath. Would you be able to recommend me the specialist you are seeing to get more tests done if necessary and to get advice and prescriptions? Will I need a prescription to get the supplements you are taking?

    Many thanks for sharing the articles with me, I will read them all.

    Again, many thanks for all your help and I hope to hear from you soon!




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  3. Hi Paloa,
    I'm really sorry for your loss :-( Its the most devastating feeling. Gutted for you.

    In the first few pregnancies I became pregnant naturally, the doctors told me I should be able to continue to get pregnant naturally, but because of my age we turned to IVF - with many failures. I think I did 7 rounds. I usually always got pregnant but then would loose it early. As soon as I turned to 5methylfolate it worked! 2 weeks later in fact.

    What I have found is that doctors don't believe in the folic acid/methylfolate theory. So your doctors attitude is very normal. Naturopaths on the other hand seem in agreement for the argument against folic acid - so a debated subject. What my doctors did agree is that 5methylfolate achieves the same end result as folic acid, so you don't need to have folic acid if you're on 5methlyfolate. In that case, if the naturopaths are right then it will help the pregnancy. If the doctors are right, well you've lost nothing.

    So you've everything to gain from taking 5methylfolate and nothing to loose. If you are homozygous for MTHFR I'd definitely, without consideration, get onto methylfolate and cut out folic. Don't listen to your doctor. The medication I have been taking can be ordered online and you don't need a prescription.

    I'd also recommend getting a DNA test done through SmartDNA in Australia. Then get a naturopath specializing in fertility to interpret results.

    What country are you in? My specialist lives in New Zealand.

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  4. Hi Lisa,

    Thanks for your quick reply and kind words!
    I am compound heterozygous – one C677T and one A1298C. Will methylfolate work?

    I am in Sydney. Do you know a good specialist here? I have found this clinic on the internet but I haven't seen any reviews: http://www.mthfrsupport.com.au/

    Can't thank you enough for reading my posts and answering back :)



    ReplyDelete
    Replies
    1. I guess if you felt strongly enough, you could get on a plane and pop over the ditch to Auckland. The clinic I've been going to is:
      http://www.mother-well.co.nz
      The lady's name is Loula George. She's excellent. Maybe you could do a phone appointment with her?

      See comments below:

      Delete
  5. I don't know anywhere in Sydney to go - sorry. But yes methylfolate will work for you. Get your partner tested as well, if he too has MTHFR then you should both be on it. That was the case with my husband.

    Seeing MTHFR is all about cell production and maintenance you will appreciate it has equal effect on egg and sperm quality. If either is off then there will be issues with your embryo quality, hence miscarriage.

    Both you and your partner should get DNA testing and focus on improving your methylation system. That's what worked for us. Talk with naturopaths, not doctors. Doctors will only confuse you cause they aren't taught about it.

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  6. Many thanks Lisa!
    I have already made an appointment with a Naturopath. I am looking forward to the consultation, I guess something needs to change as things having worked for me so far. I will let you know how it goes!
    Many thanks for your advice, it has been very helpful for me!

    ReplyDelete
  7. OMG! Yor blog saved my day! Congratulations on your baby girl! She is really cute. And I'm glad I've found you and your blog. Would mind talk with me about this a little bit?
    I'm 34 years old. Last year I had a miscarriage when I was 6 weeks pregnant. I'm Brazilian but I'm temporarily living in the USA. After the miscarriage I decided to go to Brazil and see my doctor. There I had many lab tests done and discovered I'm Homozygous C677T and that my homocysteine level was 13.5 u/ml (which is high, right?). Since in Brazil there aren't many options of vitamins my doctor prescribed me a regular complex B and 5mg folic acid. Then I returned to the USA. After a month here using both vitamins (and some others) I decided to read about the subject in the internet and I got really scared. Now I'm completely confused and needing some help. First thing I did 3 weeks ago was to cut off all food that was enriched with folic acid and I also stopped using both vitamins (complex B an folic acid). Second thing I did was to buy a new complex B with the correct forms of the vitamins (400mcg of methylfolate and 500mcg of B12). I was using it and everything was going ok until the day decided to increase the amount of B12 and methylfolate. 10 hours after that, I was sleeping when I woke up with my heart beating really fast and strong. Since I have mitral valve prolapse I got really worried, but a few minutes later I'd began feeling ok. But I'm still having lots of side effects. I'm trying to get some help from doctor around here, but it is a small city and doctors here are so expensive.
    My only question is? Have you had any side effects when you changed vitamins?
    Thank you in advance! All the best :)
    Marina

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    1. Marina, great work on your research. You're on the right path, well done. I personally didn't have side effects with 5methylfolate, but I know that lots of people do. What all the naturopaths I have spoken to say is that you have to slowly work your way up with it. So start taking small amounts, then slowly increase. It gave my father gout when he had too much of it.

      There's an article I'll try tracking down for you.

      Good luck. Xx

      Delete
    2. http://mthfr.net/methylfolate-side-effects/2012/03/01/

      Here is the link. It talks about 5methelfolate side effects. Am sure it will help.

      Delete
  8. Hi Lisa!

    Thank you for all the information. I'm having lots of side effects. Even when I'm using 200mcg every second day, for example. Maybe I have some other mutation that I'm not aware of. Maybe I have something else. Last week I had to go to the ER. Now I'm willing to stop trying because I'm felling completly unhealthy that my husband is getting worried. I'll give it a break. I saw many people that never had any side effects, I'm glad you are one of them :)
    Thanks again!!! :D

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    1. Hi Marina, I'm sorry to hear you are having so many issues. If it helps, of the people I know who have started taking the bioactive B vits, more have had reactions than not. The lady at the health store told me that some people are super sensitive and can only tolerate a couple of drops at a time to start with. The idea being to slowly, over a number of weeks, to build up.

      Delete
  9. I have had four Miscarriages over the years, and I have not been happy, I search for solution every where all to no avail, My condition be came very complex to an extent of me having Miscarriage every five month. Until I got the contact of a doctor from the testimony of Others on the internet. I contacted him made him understand all I have passed through over the years, and he gave me his medication which I too for two month, and now am a mother of three month old Baby name John. If you have such problem, contact the doctor through his email at drsteve833@gmail.com
    Am happy now.

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