MTHFR

MrsSJE2011 · July 2013

Does anyone know if I had genetic screens, including an Ashkenazi panel, done during my initial IF work-up would they have looked for MTHFR mutation? We were talking about it at work today for a totally different reason but it got me thinking as many of the diagnoses linked to a MTHFR mutation run on both sides of my family and I have two myself! I know I could call my RE and find out, but figured somebody on here may know.
THANKS!

tptbabe · July 2013

I'm a little concerned now, because I never knew that the MTHFR mutation had anything to do with anything other than fertility??? (Yes, I live under a rock. I've only ever heard of it WRT fertility treatments?) Out of curiosity, I did a google search about what conditions are caused by this, and in a list of 64 possible diagnosis, I have 11. And there are at least that many more diagnosis in my immediate family!

I have no idea if my RE tested me for this, so I'm calling first thing tomorrow to find out! I know this isn't what you were looking for here, but I just wanted to say THANK YOU!!!

MrsSJE2011 · July 2013

tptbabe said:

I'm a little concerned now, because I never knew that the MTHFR mutation had anything to do with anything other than fertility??? (Yes, I live under a rock. I've only ever heard of it WRT fertility treatments?) Out of curiosity, I did a google search about what conditions are caused by this, and in a list of 64 possible diagnosis, I have 11. And there are at least that many more diagnosis in my immediate family!

I have no idea if my RE tested me for this, so I'm calling first thing tomorrow to find out! I know this isn't what you were looking for here, but I just wanted to say THANK YOU!!!

This is exactly the red flags it raised for me! We were talking about it because a coworker's husband had what was being diagnosed as bipolar disorder. She was desperate to get him help that actually worked (had minimal results with psychiatric meds) and his illness was causing their marriage to dissolve. Long story short, they ended up at a doctor who wanted to test for MTHFR, he came back homozygous, was started on high dose replacements of folate and a few other things and is doing the best he has done in years and is off all psych drugs.

tptbabe · July 2013

MrsSJE2011 said:

tptbabe said:

I'm a little concerned now, because I never knew that the MTHFR mutation had anything to do with anything other than fertility??? (Yes, I live under a rock. I've only ever heard of it WRT fertility treatments?) Out of curiosity, I did a google search about what conditions are caused by this, and in a list of 64 possible diagnosis, I have 11. And there are at least that many more diagnosis in my immediate family!

I have no idea if my RE tested me for this, so I'm calling first thing tomorrow to find out! I know this isn't what you were looking for here, but I just wanted to say THANK YOU!!!

This is exactly the red flags it raised for me! We were talking about it because a coworker's husband had what was being diagnosed as bipolar disorder. She was desperate to get him help that actually worked (had minimal results with psychiatric meds) and his illness was causing their marriage to dissolve. Long story short, they ended up at a doctor who wanted to test for MTHFR, he came back homozygous, was started on high dose replacements of folate and a few other things and is doing the best he has done in years and is off all psych drugs.

So glad to hear that! It's amazing to think that some people (myself included) go for so long, trying to figure out something that will work, and it could be just such a simple solution! I recently found out that my thyroid is jacked, which explains quite a bit, but this might have a part in it as well, so I'm definitely going to investigate that! Also, my RE is going to be cranky that I'm calling for the 3rd time in a week, when we're technically on a "break" from treatments until everything is medically and financially sorted... Oh well!

monimu13 · July 2013

I was only tested for it after my second loss...I don't think REs routinely test for this. A lot of doctors are of the mindset that it actually has no effect on fertility/losses. Ive been on Folgard since my diagnosis of compound heterozygous. Hope that helps a little

thebrewers2005 · July 2013

We were required to do genetic testing before IVF because of our diagnosis... we already knew DH was a carrier for CF. We did ours thru Counsyl (you can find them in a Google search I'm sure) and they did test for MTHFR. Hope that helps!

liz4paws · July 2013

Interesting thread, ladies. I was tested for MTHFR after my first and only loss and I tested positive for heterozygous. Interestingly enough, my dad and his side of the family have rampant bipolar disorder. I appear to have missed out on that, but maybe it is related?

I understand there can be increased risk of stroke and blood clots and whatnot, but not sure about any other implications. I'm also on folgard RX and I hope it makes a difference in my next cycle.

MrsSJE2011 · July 2013

Just got off the phone with my nurse!

My original workup was with a different RE in the practice and she did not order it in my genetic testing. My nurse said that my current RE would have ordered it given my history of migraine with aura, which makes me 4 times more likely to be a carrier than the general population, and she thinks current RE just missed the fact that I was not tested.

She has to run it by him tomorrow AM, but said there should be no problem with him ordering it. It is a "send out" test, so it will be 1-2 weeks for results to come back and FET is scheduled for two weeks from today. She said if the results come back indicating I am a carrier, it is okay if I get started on something for it right after the transfer (as early losses from it tend to be at 6-7 weeks and I would only be at 3-4 weeks).

WOW, so glad I asked! Clearly hoping the results come back that I am not a carrier, but at least I will know.

tptbabe · July 2013

MrsSJE2011 said:

Just got off the phone with my nurse!

My original workup was with a different RE in the practice and she did not order it in my genetic testing. My nurse said that my current RE would have ordered it given my history of migraine with aura, which makes me 4 times more likely to be a carrier than the general population, and she thinks current RE just missed the fact that I was not tested.

She has to run it by him tomorrow AM, but said there should be no problem with him ordering it. It is a "send out" test, so it will be 1-2 weeks for results to come back and FET is scheduled for two weeks from today. She said if the results come back indicating I am a carrier, it is okay if I get started on something for it right after the transfer (as early losses from it tend to be at 6-7 weeks and I would only be at 3-4 weeks).

WOW, so glad I asked! Clearly hoping the results come back that I am not a carrier, but at least I will know.

Hoping for good news for you!!!

I called my RE this morning, but the office is on vacation until next Tuesday? (They work with another clinic when this happens, otherwise they would have let us know.) I did look up the coverage for the test though, and considering it's not covered by insurance and costs ~$500, I'm sure I would have remembered that! I have an appointment with my GP on Wednesday, so I'm going to ask him about it then. Or possibly wait until my [eventual] appointment with the endocrinologist?

MrsSJE2011 · July 2013

You can actually get a private one without an MD order for $150! Found this looking around at information online

I'm actually kind of surprised that your insurance does not cover it. You should be able to get it coded for your other diagnoses that could be MTHFR related and not coded for infertility.

tptbabe · July 2013

MrsSJE2011 said:

You can actually get a private one without an MD order for $150! Found this looking around at information online

I'm actually kind of surprised that your insurance does not cover it. You should be able to get it coded for your other diagnoses that could be MTHFR related and not coded for infertility.

We're in Canada, so it might be a little different here? We have no "fertility" coverage at all, but most diagnostics are covered through provincial insurance. I figure talking to my GP might help, since he's been able to get some tests covered that wouldn't be normally. I will definitely look around though!

ETA: Provincial insurance doesn't cover it. Private insurance here basically covers medications and supplies, eyecare and dental.

anations · July 2013

My doc doesn't test for it. He said it is no longer standard?!?

drake986 · July 2013

Hey there! I was diagnosed with MTHFR and found out it's a pretty popular diagnosis, about 50% of the population. For men it's not usually a big deal, but for us ladies it can lead to issues with fetal development. If you have MTHFR, you have a slightly higher risk for having a child with neural tubal defects like Spina Bifida, and you have a slightly higher risk for blood clots later in life. I'm on Folgard (RX Folic Acid) and a baby aspirin every day. Being on Folic acid & aspirin severly lowers your chances for the above issues as well, basically to the stats of a MTHFR negative person. I hope this helps!!!!! Best of luck to you!!!!!

tptbabe · July 2013

This is probably going to be a really stupid question, so bear with me a second... So, if you're treating the MTHFR (I still see motherf***er every time I type that), your potential child will have less chance of being born with those issues, correct? Does this also mean that they're less likely to develop these issues later on in life? Like, does their system develop the ability to deal with these things?

drake986 · July 2013

Lmao! I think Of That Every Time I See It!!!! (Sorry For All The Caps, On The Mobile Version And It's Capitalizing Everything...) Treating MTHFR means That Your Baby Will Have Less Of A Chance At Developing Problems Caused By The Disorder, But They Still Have The Same Chances Of BeinG Diagnosed With MTHFR. If They're Not Born With Issues Like Spina Bifida, They Won't Develop It Later In Life. If They Have Mthfr, They Will Have The Same Chances As We Do Of Developing The Blood Clot Issues And Having Children With MTHFR. Hope That Helps! :-)

tptbabe · July 2013

drake986 said:

Lmao! I think Of That Every Time I See It!!!! (Sorry For All The Caps, On The Mobile Version And It's Capitalizing Everything...) Treating MTHFR means That Your Baby Will Have Less Of A Chance At Developing Problems Caused By The Disorder, But They Still Have The Same Chances Of BeinG Diagnosed With MTHFR. If They're Not Born With Issues Like Spina Bifida, They Won't Develop It Later In Life. If They Have Mthfr, They Will Have The Same Chances As We Do Of Developing The Blood Clot Issues And Having Children With MTHFR. Hope That Helps! :-)

OK, that makes sense, thanks!

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