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New here, MTHFR

SuzyHomemaker07SuzyHomemaker07 member
in Trouble TTC
Hey ladies,

I'm new to the bump, trying to find where I fit in. I've been lurking awhile on this board and thought I would say hi. And ofcourse...ask a question ;) I've been learning tons reading here (started on TTCAL), been with an actual RE about 2 months and thought I was getting a grasp on things until MTHFR diagnosis.

I've had 2 losses with low progesterone. Did the RPL panel and found I am compound heterozygous (have one of each of the mutations) for MTHFR. I'm in a tail spin reading online :(. He referred me to a hematologist and told me to take Folgard.

Anyone have MTHFR? I'm reading Folgard is the wrong thing to take bc it's not folate, my RE said supplements of folate (not folic acid) are not FDA monitored so he didn't want to prescribe. And I'm lost with what type of dr to see for my ongoing health, where do I go for answers bc I'm so lost. What kind of dr to see for myself? What supplements?

If you made it this far, thank you. Any advice appreciated. Looking forward to getting involved on this board.
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Re: New here, MTHFR

  • angelattc1angelattc1 member
    I don't have any advice either but I'm new to the board as well and wanted to say welcome!  :-h
    Me {29} DH {31} ~ TTC #1 Since August 2009 with PCOS
    November 2010 - PCOS DX
    2011-2013 Metformin and NTNP
    July 2013 - Started 3 rounds of low dose Clomid - No O
    September 2014 - Started Pregnitude and Metformin
    January 2015 - New insurance

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  • mshandlebarmshandlebar member
    That makes me the third non-advice having welcomer! The ladies here really know their stuff, so I am sure someone will be able to give you advice. Hope your stay here is short.
    ****SIGGY WARNING****

    image





    TTC since May 2013
    Me: 31, blocked tube
    DH: 35, azoospermia :(
    IUI #1 (50 mg Clomid, Ovidrel) on 9/7/2014: BFN
    IUI #2 (100 mg Clomid, Ovidrel) on 10/3/2014:     BFN
    IUI #3 (100 mg Clomid, Ovidrel, Estradiol) on 11/1/2014: BFN
    First RE appt. on 11/11/2014
    November 2014: Benched due to cyst :(
    IUI #4 (5 mg Letrozole, Follistim, Ovidrel, Crinone) on 12/26/2014: BFP!!!
    Beta 1 (1/9/2015): 292     Beta 2 (1/12/2015): 843


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  • BunnyBerryBunnyBerry member
    I'm so sorry. :( I've seen at least a few ladies with MTHFR on here before, and I've heard them say that high doses of folic acid make a big difference. I can see why you're concerned that your RE is too cautious about treatment...sorry that I have no experience or advice either! Perhaps search past posts on the topic, too, if you're being tempted by Dr. Google at the moment, because I know there have been quite a few. :)
    January 3T Siggy Challenge - New Year's Resolutions
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    imageimage

    Me (29), DH (30) TTC actively 54 55+ cycles | All BFNs
    MFI (low everything) | Endo Stage 1 & Stenotic Cervix (treated) | PCO
    Married - July 2008 | Started TTC - Jan 2009 | RE Visit #1 - Mar 2014 
    IUI #1 ICI #1 - June | IUI #1.1 Laparoscopy - Aug
    IUIs #1.2, 2, 3 - Sept, Oct, Nov (Letrozole) - BFNs 
    IUI #4 - Dec (Bravelle) | IUI #5 - Dec/Jan (Bravelle) - 5 follies + TI - BFNs
    IUI #5.1 - Jan (Bravelle) Cancelled 
    Planning to start IVF in March!
    ***All Welcome***
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  • mmmKayymmmKayy member
    I have no idea what MTHFR is, and honestly, I can't help but read it as "motherf*cker" lol.

    With that said, I have no advice, but wanted to say Welcome!!!!
    :: Me: 30 ~ DH: 27 ::
       :: TTC since Oct 2013 ~ NTNP since Dec 2010 ::
    :: DX: PCOS Characteristics & MFI ::
    ~May 2014: 1st Consult with RE~
    ~SA #1/#2 (low on all #'s), HSG (found non-threatening uterine fibroid)~
    ~*1500mg Metformin Daily*~
    *June: Medicated Cycle #1: 5mg Letrozole + Trigger + TI + Progesterone = BFN* 
    *July: Medicated Cycle #2: 5mg Letrozole + Trigger + TI + Progesterone = BFN*
     *Aug: Medicated Cycle #3: 5mg Letrozole + Trigger + TI + Progesterone = BFN*
    *Sept: IUI #1: 5mg Letrozole + Follistim + Ovidrel + IUI + Progesterone = BFN*
    Possibly Looking at IVF.. RE Suggested DH See a Urologist Before Moving On With Treatments 
    *Currently on a Break*
    ~*All Welcome*~
     

    image 

     ::: 3T November Siggy Challenge: Animals Being Jerks:::
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  • tumbleweed123tumbleweed123 member
    Hello!  Welcome!  If you are only heterozygous, as I am for MTHFR, the main thing is to just load up on Folate.  I don't take Folgard, because I have read that it is important to take Methyl Folate rather than folic acid.  (MTHFR mutations make it hard to process folic acid into methyl folate, so I'd rather just take methyl folate and avoid the bottleneck of processing)  I take Thorne prenatal vitamins (bio-available folate in them) and I also supplement with over the counter, bio-available equivalents of folgard: 2,000 mcg  L-methyl folate, 25mg bio-available B-6 and 1,000 mcg bio-available B-12.  

    I also will be taking baby aspirin when I start stims for IVF in a week or so.  My RE says that there is no proof that only a heterozygous mutation causes miscarriage, but he was totally open to me taking baby aspirin during IVF.  

    My RE did not refer me to a hematologist, so I can't comment on that part.  I'd love to hear what you learn, if you do see a hematologist -- tag me in your follow-up post if you do go!  

    Obviously, you should do what works for you, but that's my mthfr routine.  
    I'm sorry for your loss...I hope your stay here is short and sweet!  :)
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  • SuzyHomemaker07SuzyHomemaker07 member
    @tumbleweed123‌ do you have one mutation or two? I have two mutations, both heterozygous. Thanks for the info! My RE doesn't seem into the bio available forms bc they aren't FDA regulated. I'm going to bring it up again.
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  • dancersposedancerspose member
    I have no advice to offer but wanted to say welcome and good luck!
    Me: 31 (PCOS) possible right tube issues DH: 36 (SA normal) 
    Started dating in 2006, Married 2012 
    TTC since November 2013 
    First RE visit due to irregular periods: June 2014
    Lap/Hysto to remove polyps, cyst and tube blockage 11/6
    Cycle 1 (Dec. 2014) TI with Clomid, Trigger, & Progesterone CX due to no response
    Impatiently Waiting CD1 to try again with Fermara Back on the bench due to giant cyst,
    who know I'd ovulate on my own after a cancelled cycle and end up with a mega cyst :(
    All Welcome
     
    image
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  • kushie77kushie77 member
    I have no advice, but wanted to say welcome.  

    ****SIGGY WARNING****


     Hashimoto's with irregular cycles  DH- 37 Severe oligoasthenoteratozoospermia

    TTC since May 2012

    HSG- all clear

    March 2014 - RE appt. 
    April 2014- Saline sono all's good, terrible SA results - 8 sperm found all abnormal
    May 2014- Fert Urology- Bilateral varicoceles, recommend Donor Sperm
    12/2014-  Surprise natural BFP  EDD 7/31/15 Plan:  Starting foster to adoption, natural cycles




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  • tumbleweed123tumbleweed123 member
    edited October 2014
     @suzyhomemaker07  I only have the hetero mutation on c677t.  


    ******* warning******* someone else's pregnancy mentioned********





    Fightersince83 about getting your clotting panel done.  That will shed more light on this for you.  Clotting panel is super important to test if you have these mutations. Also, make sure to get your homocysteine levels checked. Elevated homocysteine levels point to issues with the MTHFR mutation.  My levels have dropped since taking the extra vitamins.  I hope this helps!  Again, do what makes you feel good, I'm not a doctor, just another MTHFR lady. 

    eta: tag
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