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  1. #1
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    Default Has treatment helped with MTHFR?

    Hi there,

    I just found out today I am positive for the MTHFR problem where folic acid is poorly metabolised.

    Does anyone else have this problem and has treatment helped in a BFP and preventing miscarriages?? I have read some Drs don't beleive it has any impact... my FS didn't test it, it was my new naturopath.

    Makes me realise what a complete miracle my DD was with all the odds stacked completely against us!

    thanks

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    Default Me Too...

    Hi Pink,

    I also just found out that I have the MTHFR gene mutation. It has kind of been freaking me out a bit, mostly because my FS missed it and my (new) Naturopath is the one who suggested testing for it. Feeling pretty p***ed off about the cycles we did with that FS, feels like a lot of wasted time, energy and money when it sounds like the odds were against us because of this. My FS has now suggested to just take mega doses of folate (5mg), but Naturopath says this is a bit ridiculous because you still just wee most of it out. Just because you take more doesn't mean you metabolise more according to her. She has now given me folate in a metabolised form, and suggested that we wait at least 3-4 months before cycling again, and also said that our frostie is likely compromised and we should probably not transfer it. The FS says 'sure, no problem, lets do FET in 3 weeks'! So we are currently finding the differing opinions and advice contradictory and confusing. We have decided to not go ahead with anything yet as we now need to get DP tested to see if he has it as well, and also Hair Mineral Analysis Tests for both of us.

    Very frustrating....what are you deciding to do?

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    Hi Northcoastgirl,

    Great to hear from someone else who has this - but sorry to hear it has been a complication for you!

    I hear your frustration - wish I had found out 5 years ago when we started TTC our DD. Although we couldn't conceive naturally we conceived her with IVF and she is completely healthy.

    I am seeing the GP at the naturopathy clinic tomorro so hope to get more info and advice then. my naturopath recommends starting on the metabolised folate so I will pick that up tomorro. We will find out about my DH results then too.

    Keen to find out more info and how it can impact TTC _ I'll let you know what they say tomorro.

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    I recently found this out too. My FS has me taking megafolate. I should be having a FET in 2 weeks so it hasn't changed my FS suggestion for the next cycle. I'm also having to go on clexane this time around too for something else they found after this last miscarriage. Just seems that the more tests they do, the more they find.

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    Jenna..my FS also said that he would use Clexane next time as well. He also said he would use prednisone which I think is used for NK cells, which I am not diagnosed with, but he seemed to think this would be the go anyway...not really sure why, will have to ask more detail next time I speak to him.

    Pink..how did you go with the Dr today? I have been wondering if you got any good info..

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    Default me also

    hi girls, I also have been diagnosed with the MTHFR gene mutation. I posted a topic a few months ago about it. The reason I was tested is because after 3 failed cycles and 2 m/c (nat and IVF) I wanted them to throw me all the tests. I tested positive to coeliac disease and the MTHFR.

    I consulted a m/c specialist at the WCH as I didn't believe my FS had enough background specialty in this type of thing. She advised me that research indicates that taking 5mg folate 3 x a week helps with the problem. Unfortunately you cannot reverse the MTHFR, but you can assist in counteracting the problems associated with it. She also put me on mega B 3 x a week. I subsequently moved clinics to a much more experienced FS, who agreed with this protocol. Next week I will start my first long down reg cycle (normally do antagonist) and I'm hoping that after 3 months of being gluten free, on the mega fol and mega b, there may be a better result. Unfortunately I just tested positive to NK cells also.

    Like you Jenna, I feel that every new test comes up with another issue and it is depressing!

    I would definitely recommend the advice of my m/c specialist and go for the mega b in conjunction with the mega fol. Also get tested for coeliac disease as it is more prevalent then they realise and has a big link to m/c and infertility. Yes you will pee out what you dont need of the b and folate, but that's ok. The m/c specialist also said if you are 'heterozygous' for the gene mutation this is a suitable regime, but if you are homozygous, then you should take mega b and mega folate daily.

    Hope this information helps one or more of you!

    All the best

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    I'm another with MTHFR. I've been on both Mega Folate & Mega B since June last year. I also am positive for NK cells, have elevated coeliac and homocyctine levels and was recently informed my anticardiolipin IgM is also elevated.

    I can say that the Mega Folate does increase your levels in your body. I recently had BT's for something besides IVF & my folate and B levels were checked. Both came back really good and much improved on what they used to be.

    Good luck to everyone here. Hopefully all these additional meds were on help us get that elusive, sticky, viable BFP

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    Interesting to hear everyone's experiences

    I saw the GP at the Naturopath clinic and she said my DH is -ve for MTFHR so its just me which is good too - did everyone else have DH tested too? apparently there is some implication if partners have the gene too.

    Basically not too much new info - she just agreed with the naturopath that taking the metabolised form of folate (one daily) is the best approach. She didn't advise to avoid ivf for 3 months.

    As I already have another clotting problem (prothrombin) and MTFHR can increase clotting too she thinks I willl need clexane for my next IVF cycle - rather than the low dose asprin i have previously used.

    I am so interested to hear what my FS has to say about all this.

    I agree - the more they look the more they find.

    Those with the NK cells -did they just do a blood test or a biopsy - I am interested in asking about it. I know Drs only usually look into things after 3 miscarriages but I am not keen to go thru another one - as I'm sure noone is - I'd rather pay for the blood test if necessary.

    Lets hope the increased folate has success for us all in 2010
    Last edited by PinkButterfly; 11-03-2010 at 20:36. Reason: spelling

  9. #9
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    Quote Originally Posted by PinkButterfly View Post
    Those with the NK cells -did they just do a blood test or a biopsy - I am interested in asking about it. I know Drs only usually look into things after 3 miscarriages but I am not keen to go thru another one - as I'm sure noone is - I'd rather pay for the blood test if necessary.

    Lets hope the increased folate has success for us all in 2010
    Pinkbutterfly - I had an endometrial biopsy done. From what I hear the BT does give an indication but the biopsy gives you the clearest result. They are able to tell the % from biopsy. I do know normal is under 10%. I don't know about others but mine was 44% so prednisolone was the first course of action for me

  10. #10
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    Pink Butterfly - I also had endometrium biopsy done, this is the best test for NK cells. Mine came back at 30% on the equivalent of day 24 of a 28 day cycle (mine is never 28 days!).

    My FS at the new clinic said that the norm on CD24 of a 28 day cycle is that 25% of women will be 27% or higher, norm is 25%. She also said that on CD25, the body jumps significantly as it is the process with approaching AF. 25% of women will be around 40% so it could be higher on CD24 as it is approaching CD25.

    It is very scientific stuff, and FS was reading of a graph they have to interpret. I feel a bit better about this when it was explained. She is seeking a 2nd opinion from another FS as she considers my result borderline. Either way I will probably go on Doxycycline, pred 15mg and baby aspirin.

    I also wasn't prepared to wait until I had a 3rd m/c to get tests done, as I figure I will happily pay if I need to to have them done, why have another m/c unnecessarily?

    My DH was also tested for MTHFR and came back -ve. We also both got the karyotype testing done, and we both had normal results on that also.

    On a bright note, I found out today that a friend in her 40's who has been trying for 8 years with IVF, is now pregnant! She had donor embryos and it was the best thing for her. Don't give up ladies, that is true inspiration. Also, if you are reading this, and you have embryos you don't want as you have as many babies as you want, please please consider donating them to someone who needs them


 

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