MTHFR testing questions

[LionsandBears]

To anyone who has been tested for MTHFR, were you tested for both C677T and A1298C genes? I see the test for C677T is Medicare rebateable, but can't see if A1298C is. My GP doesn't know if it is.

Did you get tested for anything else with it?

Who organised the test and how long did the results take? I can't get in to see my GP for a while.

If you were found to have MTHFR, we're you prescribed 5-MTHF instead of folic acid? If so, how much and where did you source it? Is it available OTC in Australia or do you need a prescription? I can see it's available online from the states. Are you taking anything else, like B6, B12, baby aspirin or whatever?

How long did you take any of this before TTCing again? I've been told different things. One person says 1 month, another says 3 months.

Did a MTHFR affect life insurance if you have it?

TIA

[LionsandBears]

Bump

Also - was your partner tested? Apparently both parents being affected increases the chance of something going wrong.

[LionsandBears]

Anyone?

[Beatrix]

I have this gene.. I had a blood test to determine it, that was all.

My ex husband or current husband have never been tested, but mine runs in the family.

When i was pg i took 5 times the amount of folate rather then the normal recommended dose.

[Astrolady]

To anyone who has been tested for MTHFR, were you tested for both C677T and A1298C genes? I see the test for C677T is Medicare rebateable, but can't see if A1298C is. My GP doesn't know if it is.

I was tested for 2 variations, but can't exactly remember what two they were


Did you get tested for anything else with it

Sorry can't remember . I don't think so though. It was 8.5yrs ago

Who organised the test and how long did the results take? I can't get in to see my GP for a while.

It was done through the obstetrician I was seeing at the time, and picked up late in my pregnancy with Lachlan

If you were found to have MTHFR, we're you prescribed 5-MTHF instead of folic acid? If so, how much and where did you source it? Is it available OTC in Australia or do you need a prescription? I can see it's available online from the states. Are you taking anything else, like B6, B12, baby aspirin or whatever?

I had to take folate and vitamins B12 and B6. With my next pregnancy I was put on baby aspirin.

How long did you take any of this before TTCing again? I've been told different things. One person says 1 month, another says 3 months.

Did a MTHFR affect life insurance if you have it?

I don't have life insurance

TIA

[Astrolady]

Bump

Also - was your partner tested? Apparently both parents being affected increases the chance of something going wrong.

Yes Andrew was tested a few days after I was. I have it. He doesn't.

Here was my post when I was diagnosed - https://www.bellybelly.com.au/forums...thfr-gene-253/

[LionsandBears]

Thanks Ness & Kathryn

Kathryn - did you get a prescription for the extra folate? And was it folate or folic acid? That's if you can remember.

There's a big difference, apparently and folic acid, which is synthetic, can actually block the receptors for folate, so apparently if I have MTHFR, I shouldnt be taking folic acid. I need to take activated folate.

[meow]

I'm looking into getting our family tested (mostly my autistic son) so thanks for your thread because you have a lot of questions I was unaware of. All I know if that synthetic folic acid isn't meant to be much use if you have MTHFR. I'm considering just supplementing 5-MTHF anyway and seeing how we fare on it.

[LionsandBears]

I was actually thinking of asking you, as the link to autism is pretty clear. If you want more information, look up mthfr dot net. It's run by a naturopath in the States whose whole family has various versions of MTHFR.

Apparently, it is possible to both under methylate and over methylate folate. So the 5-MTHFR may not be good if you over methylate. I'm thinking of trying it anyway, whilst I wait on getting the blood tests & results. I do know I've always had high Folic acid levels when tested, which may mean I undermethylate. There are other indicators, including the ADD and other health issues. Interestingly, for the A1298C mutation, it's recommended to heal the gut first. I see a link to GAPS. Obviously, I am most interested in any possible link between folate methylation and DNA mutation (there has been shown to be a link between MTHFR and T21).

I also need to find out the difference, if any, between 5-MTHFR and L-MTHFR as a supplement. They may be the same thing. You need extra B6 & B12 with it as well, as the high folic acid/folate can disguise a B12 deficiency. Anyway, I'm going to order some stuff off iherb, or of the mthfr guy's website.

Meanwhile, I've started green smoothies as a way to increase my daily dose of natural folate.

[meow]

The green smoothies is an AWESOME idea! I hope the testing gives you some answers... seems a worthy route to check.

Thanks for the info- I didn't know you could under and over methylate folate.

[Bumperstump Cummerbund]

What's your recipe for the green smoothies L&B?

Many thanks to Meow for sending me to this thread as well As I said to her, surely my problems can't be caused by this one thing?! But it certainly looks promising. I wanna go right ahead with the pills or whatever, I can't afford the testing at the moment. Given my recurrent miscarriages at the same gestation and the depressive family history, I reckon this is right on the mark anyway.

If anyone knows of an aussie stockist, please let me know!

[LionsandBears]

I dont know of an Aussie stockist. I'm looking on iherb and mthfr dot net to see which ones are best.

The test is Medicare rebateable apparently. I know sometimes people are charged $50 but you should be able to get it bulk billed. I'm ordering the pills now though I havent had the test yet. My GP is a PITA to get in to see. If you do get the test, make sure it's for both mutations, not just C677T.

My green smoothies include:
Kale
baby spinach
beetroot (not a lot)
avacado
banana
strawberries and other berries if I have them
sometimes carrot or apple

Things with lots of natural folate. I did not know cos lettuce was high in folate. I add the fruit to disguise the tast, though strawberries are also good for folate.

You can add cacoa or cocoa as well. Whatever you like really. I use my TMX, so nothing is wasted like with a juicer. Just add ice or water to thin it out.

[LionsandBears]

Well results are back in. I am compound heterozygous for MTHFR, which means I have 1 mutation on both genes. Unfortunately, there is not a lot of information on what this actually means.

I've started taking the activated folate, which is good. It explains why my folic levels have always been high - I dont methylate it properly. But I dont know what it means in general. I need to do more reading.

[meow]

Oh wow! How are you feeling??

I don't know if this is too simple for you... so far this bog post has been my main source of info about MTHFR.
http://aspirenaturalhealth.com/blog.asp?blogid=457

[nothing2lose]

Well results are back in. I am compound heterogenous for MTHFR, which means I have 1 mutation on both genes. Unfortunately, there is not a lot of information on what this actually means.

I've started taking the activated folate, which is good. It explains why my folic levels have always been high - I dont methylate it properly. But I dont know what it means in general. I need to do more reading.

Are you having a followup appointment with anyone to help you interpret the result???

I need to get mine done too My folate is always high.......

[LionsandBears]

I don't really know how to feel. Angry I think. Bemused. It's an answer of sorts, but may still have nothing to do with why the boys died. I've already discussed the possibility with the genetic counsellor who's said it's not likely related. I'll talk with her again.

I've emailed the OB who's said that there's little evidence as to the effect of MTHfR, but it's best to wait a bit longer whilst taking the activated folate. Which is disappointing when I was finally starting to feel emotionally ready to try again. I'll also take baby aspirin daily.

I just wish I knew earlier. I could have been taking this stuff already and not have to wait longer. In terms of seriousness, it seems that compound hetero is the second worst type. Lucky me. Still, it's better to know now than never, as I may now be able to prevent things like Parkinson's or Alzeimers by taking the right stuff.

N2l - I think it is worth investigating. It may be MTHFR can affect implantation.

Meow - there's a lot of information on the mthfr dot net site, if you want to read more.

[meow]

I don't really know how to feel. Angry I think. Bemused. It's an answer of sorts, but may still have nothing to do with why the boys died.

I think that all sounds perfectly normal It's certainly not the only reason for genetic abnormalities so there is no way of knowing for sure why your little boys died.

I agree that knowing now may well help you keep yourself healthy and I really hope the activated folate helps too. I hope you're not waiting too long.

I sill need to read more- but I may even wait till after we test to see if it's worth my while reading IYKWIM. We're going to our naturopath in April so I talk to him about it then.

[LionsandBears]

I agree. Dont read until you have to, otherwise you stress about things you dont need to & you have enough on your plate.

At least now I can plan things, such as vaccinations. The A1298C variation can lead to not being able to process heavy metals, so I need to look at finding ways to do that, such as ground chia seeds & clorella. Also, when we have a healthy child, it means a delayed or no vaccination schedule. So now I have the information, I hope it can help.

There will be an impact on life insurance applications and I need to tell my family so they can make an informed choice about getting tested and what that may mean to them.

I dont want to delay TTC too long as I'm not getting younger and MTHFR has been shown to increase the risk of T21.