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  1. #1
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    Default Anyone have any experience of MTHFR

    I've just received a letter from my FS saying I'm a carrier for two genes of MTHFR, with normal homocysteine levels. Included was a script for 5mg Folic Acid & mention of Clexane pre embryo transfer.
    I called the clinic nurse but she's not in until tomorrow so I can't seek clarification.
    Does any-one have any experience of MTHFR they may like to share?

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    Quote Originally Posted by Tahli View Post
    I've just received a letter from my FS saying I'm a carrier for two genes of MTHFR, with normal homocysteine levels. Included was a script for 5mg Folic Acid & mention of Clexane pre embryo transfer.
    I called the clinic nurse but she's not in until tomorrow so I can't seek clarification.
    Does any-one have any experience of MTHFR they may like to share?

    Hi Tahli,

    I have this issue as well and have had several miscarriages. I am now on a protocol to address it with clexane and baby aspirin - hopefully I will fall pregnant again soon so I can do this - for every other pregnancy I've been on high dose Folic Acid (which apparently is wrong) but nothing else for clotting. I don't have any other clotting factors, but have both of the MTHFR faults. This website is pretty good if you want to read a lot more about it: http://mthfrliving.com/

    I have been advised to not take Folic Acid, but to take the activated form of it called 5-Methyltetrahydrofolate as well as activated B6 and B12.

    I ended up buying these pre-natal supplements from the US because I couldn't find the same here in Australia - these are designed specially for MTHFR people:

    http://www.seekinghealth.com/optimal...mYz1DnnlpklVHQ

    I hope that helps. I'm sure if your clinic is already talking about Clexane, then they are a hell of a lot more onto it than my first FS who let me go through several miscarriages without offering any solutions. Check with them what they want you to take, but look into the Folic Acid versus activated folate as they are different.

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    Tahli  (31-05-2015)

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    I'm so sorry to hear of your repeated losses of your precious bubs @Leisylou, just totally and utterly heartbreaking. Have you fallen pregnant again since discovering the MTHFR?

    I read your post and started bawling my eyes out. Could I finally have the answer as to why I lost my two 10 wk old pregnancies. It took me about 7 yrs to conceive them (naturally in the end). I've felt such immense guilt & had no answers for years.

    I'm going to have a thorough read of your links tonight. Thanks so much for sharing them with me.

    I did a quick google & other problems linked to MTHFR are depression (periodically through my life), super low energy (diagnosed with Chronic Fatigue Syndrome in my early teens), migraine with aura (as do my parents), adverse reaction to anesthetics (every single time). I've had all of these all my life.

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    Summer  (21-05-2015)

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    I have read a little about Mthfr during my research on tongue tie. I am aware of a very active facebook group called Tongue Tie MTHFR. Perhaps you could look there for some further resources and support. Good luck. Xxx

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    Hi Tahli, I have MTHFR mutations too.
    Liesylou is spot on about not taking folic acid and needing those other supplements instead.

    There are some practitioners in Australia that have been trained in treating MTHFR by a guy in the US who is researching it (Dr Lynch) he designed the seeking health supplement Leisylou pointed you to.

    I went to one and found her very helpful - here's a link:

    http://mthfr.net/mthfr-resources/

    Hope it's useful, best of luck to you

    X
    Last edited by Grace0908; 21-05-2015 at 17:22.

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    Oh hon, I'm so sorry that you've been through heartbreaking miscarriages as well and not had answers. I hope this is the answer you've been looking for and that your clinic are going to support you with the right treatment, which it sounds like they are.

    I also have had depression and fatigue issues, and these are rampant throughout my family, so I believe it is definitely related. I just recently stopped all my standard vitamin B supplements and went on the pre-natal ones I linked above and I am actually feeling a lot better. I think they have definitely made a difference.

    Unfortunately I haven't fallen pregnant again yet since finding out about MTHFR - my age is definitely against me now, but I have fallen pregnant three times naturally in the past two years, so I am hoping I still have some good eggs left in there and that it is clotting factors that caused the miscarriages not chromosomes. Unfortunately I haven't been able to have any tests done on the babies to see if there are faults - so it's a bit unknown.

    Now that I'm with a great doctor I am hopeful that I can carry to term if I fall pregnant again - I am due to do my first IVF cycle next month if I don't fall this month. Good luck hon, I really hope you get that bubba xxxx

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    Quote Originally Posted by Grace0908 View Post
    Hi Tahli, I have MTHFR mutations too.
    Liesylou is spot on about not taking folic acid and needing those other supplements instead.

    There are some practitioners in Australia that have been trained in treating MTHFR by a guy in the US who is researching it (Dr Lynch) he designed the seeking health supplement Leisylou pointed you to.

    I went to one and found her very helpful - here's a link:

    http://mthfr.net/mthfr-resources/

    Hope it's useful, best of luck to you

    X
    Great site there @Grace0908 - very helpful and lists a lot of Aussie naturopaths - that's a great place to start @Tahli - you could get naturopathic support from one of those experts alongside what your FS is recommending.

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    Thanks so much for sharing your resources girls. I didn't reply straight away b/c I was waiting to hear back from my clinic. After ringing them every day I finally got clarification. I tested positive for Homozygous A1298C.
    I spoke to 2 compound pharmacists who suggested that Lynn B's perscription of 5mg Folic Acid was incorrect and that I should be seeking the active form instead. Do you know what dosage I should be seeking? My nurse said to call Lynn's office & just request the correct prescription...but for what exactly??
    This was the link the pharmacist sent me to email on to Lynn...
    http://www.mthfrsupport.com.au/folic...fr-deficiency/
    Last edited by Tahli; 31-05-2015 at 16:16.

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    Hey Tahli, good question!

    Here's what my naturopath suggested for me:

    Folate (as Metofoline), Vitamin B12 (as Methylcobalamin), and a 'Basic B Complex' (which contains all sorts of things including Thiamin, Riboflavin, Vit B6, Folate (as L-5 Methyletrahydrofolate), Vit B12 etc).

    For some reason some of this stuff isn't available in Oz, so I was told to order mine on line.

    I got the Solgar Folate 400 MCG (as metafolin); Thorne Methylcobalamin (Vit B12); and Thorne Basic B Complex via: http://www.iherb.com

    My naturopath suggested I take 5 tablets of the folate, 1 of the Vit B12 and 2 of the Basic B Complex daily.

    Alternatively you can order the prenatal supplement that @Leisylou sent you a link to - it has the folate and active B12 and B6 that form part of my supplements listed above. The only thing is my naturopath mentioned those supplements are designed for Americans so have extra copper in them which is not ideal (apparently Americans are low on copper, but that's not an issue in Australia).

    So that's two options - the prenatal is much less fussy and has been developed for MTHFR ppl (and obviously has the benefit of being a complete pre-natal supplement). Or you could go down the route of creating your own tailored supplement regimen - if you do that I would suggest you contact one of the naturopaths on the list I posted earlier, so they can work out the right amounts for you and advise of any other supplements you might need. (e.g. I'm heterozygous for both mutations rather than homozygous for one like you).

    Ps I think it's really important not just to have the right kind of folate but also the right kinds of Vit B12 and B6 ... but that's just my understanding I could be wrong ...
    Last edited by Grace0908; 31-05-2015 at 19:43.

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    Hi guys. After 2 pregnancies with early m/c in both I got diagnosed with MTHFR. I sourced a naturopath from www.mthfr.net who luckily lived in Brisbane. She put me on Active B complex which contains FOLONIC ACID not folic acid to kickstart my methylation process. I had a bit of a herx reaction at first but got through it. Then prior to ivf with egg donor she suggested I order the prenatal from seeking health.com in US. that contains methyl folate and methylb12. We need those 2 things. My fertility specialist also insisted I take high dose folic acid. Thankfully I learned otherwise from my research and I Just pretend to her that I do. However she has put me on a new drug protocol as she discovered I have adenomyosis, which is basically ends within the uterine walls. So as well as my methyl folate I take baby aspirin to thin the blood and took Synarel nasal spray for three months prior to my ivf cycle to shrink the endo. For the Ivf cycle I'm on estrogen and progesterone which is standard for ivf but I've heard that mthfrs can be low on progesterone too. I'm also on prednisone (steroid) and clexane (blood thinner). And I'm not only pregnant but have the highest hcg levels that I've ever had. I'm looking forward to next Friday when I get my first scan to see a heartbeat. I've never got that far before but signs are looking good. I also avoid foods fortified with folic acid so that is basically shelf breads , floured goods and cereals, and milk. Gluten free or organic bread are fine. And I try to eat good natural sources of folate such as greens. I make my own kale chips every day.

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