It's a New Year and a new look at my health. For fertility primarily, but also generally getting an idea of how this body works. I have heterozygous A1289C. I don't know how "seriously" to take this.
What resources or treatments have you found that were helpful?
I have a mild version as well (don’t remember which gene off the top of my head).
My GP said to not super worry, but there are some easy steps to take. For TTC, make sure your prenatal has methylated folate, not folic acid. For life purposes, try to avoid folic acid in general as it builds up in the system and can cause problems later on. The big place I’ve found it’s hiding is in enriched flour.
Hey! Not sure if I will be your best resource but I wanted to give you some kind of info I also have the MTHFR gene but I don't recall what the exact type was. That being said I met with 4 different doctors including a genetics counselor and all of them were not terribly concerned about it. My RE has me on Folgard which depending on what you read is the best solution or the worst thing in the world. After hearing from 4 different doctors that they weren't concerned I decided to file it under something I can ignore at the moment. What does your doctor say about it? Also have you met with a genetic counselor about it? Sorry I'm not a ton of help!
Me 36 DH 34 - Married May 2010 DX: PCOS/Unexplained Infertility/MTHFR Mutation TTC since December 2014 Fresh Transfer: Gonal, Menopur, Cetrotide. ~ Chemical Pregnancy FET #1: 1st Beta- 3,792~ 2nd Beta- 4,227~ BFP ~ Miscarriage at 8 weeks FET #2: 1st Beta 207~2nd Beta 235~ BFP~ Miscarriage at 6 weeks FET #3: 1st Beta 18~ 2nd Beta 44~BFP~ Miscarriage 5 weeks FET #4: 1st Beta 50~ 2nd Beta 97.7~ Miscarriage 6 weeks 5 days FET#5: 1st Beta 29~ 2nd Beta 109~ 3rd Beta 227~ 4th Beta 661~ Miscarriage 5 weeks 3 days Miracle Natural BFP Estimated Due Date June 2019~ God is good 2 snow babies
@halfanewt - I will be following up with my primary about supplements tonight. Currently, I am on Designs for Health B Supreme but I still take a generic prenatal, the Nature Made PreNatal Multi + DHA, simply because she didn't recommend a different one (and I have a month+ supply of gelcaps).
I'm going to be honest and say I have no idea where folic acid lurks... I currently do not eat gluten because of my Hashimoto's and I am trying to eat low net carbs because I think I have insulin resistance or just non-specific metabolic issues.
I will have to see what folic acid and folates are in.... Thank you!
@Worldtravler0522 - My primary doctor hasn't put much importance on it, mostly because there isn't enough research behind it. My naturopath, who I no longer see regularly, was *all* about theory. My primary is willing to try anything "that might be helpful that is not harmful" and even things that aren't proven helpful.
In her words, there's "no slam dunk diagnosis" with me. I will ask about Folgard and thank you!
I 2nd @halfanewt and make sure your prenatal has methylfolate vs folic acid. You may want to ask about adding a broken down B vitamin. I take Seeking Health Adeno and Hydroxy B12 lozenges. Eating GF you are already avoiding most of the folic acid. Some girls on that fb page I’ve mentioned also said Simply Orange is a safe OJ to drink but that some of the others actually put folic acid back in?? Also labels can be misleading since the world uses folic acid interchangeable with folate e.g. a can of beans may say folic acid but if there are no added ingredients it’s prob just naturally occurring folate from the beans.
TTC since May 2013
Mild PCOS, Compound Heterozygous MTHFR No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
@lablover78 - I was doing more reading last night, and I am still unsure how 'bad' my mutation is for fertility. I did find an article where it suggested that it was a reduced ability to process folates but no/little creation of homocysteine. The primary effects are psychological - low energy and mood, sleep disturbance, anxiety, depression. (All of which I have and actively trying to treat.) If this were all true, it would be hard to know if it was just the mutation or other factors, hence my doctor not really wasting the time to focus on it.
Yes! Actually I think you’re in good shape with the mutation you have- I wrote a whole other part but deleted it thought I was getting too wordy but actually the C677 from what I can tell is worse for fertility in that it causes blood clots which can lead to MC. One of the mutations- not sure which, think it may be the one you have, can cause birth defects so having the right supplementation can prevent that. I have 1 bad copy of each. However I know how you feel even with my RE identifying the MTHFR he was/is still just theorizing at reasons I hadn’t been able to get pregnant...unexplained is a black hole that can really mess with your mind. I see fertility treatment as more of an art than a science at this point with so many different approaches and lack of answers. Have faith and take time away when and if you need it and attack it like a boss when you feel you can- I think that’s all we can do on this journey. Hugs!
TTC since May 2013
Mild PCOS, Compound Heterozygous MTHFR No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
@lablover78 - Thank you for chiming in on this thread You are so knowledgeable!
I will ask my GP in our next email exchange. I *bombarded* her with supplement questions last night and sent a spreadsheet (well, a .jpg of one - they don't allow any other attachments!). I might be her least favorite patient...
Oh you’re so welcome but I feel like I just know a little bit. I came back to add one more I forgot- Choline is an important supplement because it helps prevent neural tube defects. My RE wanted me eating 2-3 eggs per day plus a supplement. I didn’t quite eat that many but have increased my intake. The supplement that ppl on facebook recommended (because I couldn’t find just “choline”) is Optimal PC from Seeking Health.
TTC since May 2013
Mild PCOS, Compound Heterozygous MTHFR No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
Oh wow, ok I clearly did not look hard enough. I don't know what the difference is actually. Nature's Way brand seems to have a few more additives but the alpha GPC seems pretty minimal in terms of that? The Optimal PC label says Phosphatadylcholine (from Sunflower Lecithin) and has "other ingredients" of Gelatin , glycerin and water. I see my RE on Thursday and will ask. They actually keep a lot of the supps in stock but this was one they didn't have so maybe they do now and I can see what they are using.
TTC since May 2013
Mild PCOS, Compound Heterozygous MTHFR No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
Re: MTHFR Mutation question
My GP said to not super worry, but there are some easy steps to take. For TTC, make sure your prenatal has methylated folate, not folic acid. For life purposes, try to avoid folic acid in general as it builds up in the system and can cause problems later on. The big place I’ve found it’s hiding is in enriched flour.
Hope that helps!
DX: PCOS/Unexplained Infertility/MTHFR Mutation
TTC since December 2014
Fresh Transfer: Gonal, Menopur, Cetrotide. ~ Chemical Pregnancy
FET #1: 1st Beta- 3,792~ 2nd Beta- 4,227~ BFP ~ Miscarriage at 8 weeks
FET #2: 1st Beta 207~2nd Beta 235~ BFP~ Miscarriage at 6 weeks
FET #3: 1st Beta 18~ 2nd Beta 44~BFP~ Miscarriage 5 weeks
FET #4: 1st Beta 50~ 2nd Beta 97.7~ Miscarriage 6 weeks 5 days
FET#5: 1st Beta 29~ 2nd Beta 109~ 3rd Beta 227~ 4th Beta 661~ Miscarriage 5 weeks 3 days
Miracle Natural BFP Estimated Due Date June 2019~ God is good
2 snow babies
I'm going to be honest and say I have no idea where folic acid lurks... I currently do not eat gluten because of my Hashimoto's and I am trying to eat low net carbs because I think I have insulin resistance or just non-specific metabolic issues.
I will have to see what folic acid and folates are in.... Thank you!
@Worldtravler0522 - My primary doctor hasn't put much importance on it, mostly because there isn't enough research behind it. My naturopath, who I no longer see regularly, was *all* about theory. My primary is willing to try anything "that might be helpful that is not harmful" and even things that aren't proven helpful.
In her words, there's "no slam dunk diagnosis" with me. I will ask about Folgard and thank you!
DH - low motility
Rx: Levothyroxine, misc supplements
No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
Are these the lozenges? Hydrox-Adeno B12 | 60 Lozenges | 2000 mcg Vitamin B12 | Seeking Health https://www.amazon.com/dp/B01KAPXPXI/ref=cm_sw_r_cp_apa_pY3tAbSQ4J4V4
Holy crap, 33,333% DV of Vitamin B12!?
DH - low motility
Rx: Levothyroxine, misc supplements
No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
I will ask my GP in our next email exchange. I *bombarded* her with supplement questions last night and sent a spreadsheet (well, a .jpg of one - they don't allow any other attachments!). I might be her least favorite patient...
DH - low motility
Rx: Levothyroxine, misc supplements
No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion
NATURE'S WAY Choline 500mg 100 Tablets https://www.amazon.com/dp/B00024CRC8/ref=cm_sw_r_cp_apa_2eguAbGREGVKT
But there's this Alpha GPC Choline? Alpha GPC Choline Supplement, Pharmaceutical Grade, Made in USA (60 Capsules 300mg) https://www.amazon.com/dp/B00XWQSD7G/ref=cm_sw_r_cp_apa_8gguAbNS3QYWG
Any idea on the difference? One more thing for that next email
DH - low motility
Rx: Levothyroxine, misc supplements
No Folic acid/pharmaceuticals/supplements (too many to list- private message me if interested), IVIL infusion