I’m back & better than before ;)

lablover78

Hi! I’m back after a meltdown and much needed break from TTC for a year. Eek it’s crazy how time flies! For those that are still here- I’m sorry but glad to see some friendly “faces”. I’m 39 on Sunday and am basically unexplained infertility, but also boderline PCOS, heterozygous MTHFR. Last year I ended up with an RE that I really trusted. Mostly treating with supplements (to treat findings on genetic testing), femara, TI, & intralipids. When I asked about IVF he wouldn’t do it b/c he suspected an implantation issue and I really respected his refusal to take my money when he was not confident with the outcome. Well he has started a new protocol with other unexplained IF sufferers and is getting amazing results so he says let’s move to IVF! My mind is in a much better place and I am looking forward to getting back in the saddle!

Worldtravler0522

Welcome back!  I was hoping you had your BFP and that's where you had gone off to but happy to have you back.  I hope your stay is short and sweet!  

BWhitta

Hi!!!!!!!!!!!!!! 

hoffmanr7

Welcome back! I am also moving onto IVF now. I hope yours gets you your BF!

lablover78

Thanks ladies!! @hoffmanr7 exciting, hope it’s a BFP for you too

lablover78

@BWhitta oh wow! What a year you have had- When you said hi I was confused because I swore I remembered your BFP. I just read your update and see that you’re back after a break. ((((Hugs))))) While I’ve never experienced a loss, I can only imagine the rollercoaster you have been on. I realize that I missed you ladies & am quickly remembering how this group gave me such support and a feeling of connection. Sending you all positive thoughts and virtual hugs.

mac627

Welcome back! Hope the IVF is what will finally work for you!!

BenJay

Welcome b@lablover78  

I have a question! I went through a summer of trying to figure out what's going on with me, because I wasn't feeling better after treating my hypothyroid (I kept gaining weight for no reason). I got a battery of tests done and one of my results was heterozygous MTHFR A1298C. And you're the first person I have come across that has mentioned MTHFR results - I'm curious what you know. I haven't got any official information on it. 

In case these at all relate to the 'big picture' - the naturopath diagnosed me with Hashimoto's, elevated serum copper, increased testosterone to estrogen ratio. HMO doctor put me on Metformin after I requested to address possible insulin resistance/PCOS? I just have several things going on and not a single one is 'clearly responsible' .

lablover78

Hi @BenJay there is a lot I don’t know about MTHFR but from what I do know the mutation you have (me too) prevents us from metabolizing folic acid. Therefore be careful with prenatales and other supplements to make sure you are taking methyl folate (I take Thorne brand). Also if you live in the U.S. all of the wheat crops here are sprayed with folic acid (ps- this is the man-made version of naturally occurring folate found in veggies etc which is fine for us). Therefore eating gluten free or all organic is recommended to avoid folic acid. With your other autoimmune issues I would try gluten free anyway because not only has gluten been linked to inflammation —> infertility it can also flare up autoimmune issues. Our mutation also makes it more difficult for us to detox so people use epsom salt baths. There are lots of other things to avoid (either Tylenol or nsaids I can never remember) due to the detoxing issue. There are some closed facebook groups that are extremely informative about MTHFR & TTC. If you want to private message me your name or try to find me on facebook (Emily Tedone in Phoenix) I’ll invite you to the group. I haven’t been using social media for a longtime now and haven’t checked the group in awhile since my break but I am assuming it still exists. Some of the mutations are linked to blood clotting but I think that may only be the C677 mutation which I also have a copy of- but the clotting has been found to cause RPL and RE will Rx blood thinners/baby aspirin during pregnancy for that. That’s all I can remember now off the top of my head but in general MTHFR is linked to infertility and birth defects. However it’s important to know that you can literally turn these genetic defects on and off with environment/diet/lifestyle so just b/c you have a mutation it does not necessarily mean it is expressing itself.

lablover78

Also this is a good resource
https://mthfr.net/

BenJay

@lablover78 - I hadn't heard about wheat being sprayed with folic acid. I had no idea... 

Recently I went ketogenic (but had to tone that down because my gut doesn't like all the fat, sadly). My diet has been mostly low net carbs shakes (Orgain + frozen berries + coconut milk + almond milk + full fat Fage Greek yogurt), Fage Greek Yogurt + strawberries, protein + veg lunches (usually meat on salad greens), 'keto' trail mix (some dried fruit but mostly nuts and seeds) and protein + veggie dinners. This is my workday routine, and weekends (especially with the holidays) have been a challenge. DH is on it and has lost 10 lbs!!

My doctor didn't really seem concerned about my mutation, but I did opt for Designs for Health B-Supreme (https://www.pureprescriptions.com/b-supreme-designs-for-health/p2108) It contains a folate "blend" - is that different from the Thorne Brand? (https://www.thorne.com/products/dp/5-mthf-5-mg)

I am taking Thorne's Double Strength Zinc in hopes of 'correcting' the copper serum imbalance. It seems that what I've got going on is just this generic imbalance that all points to metabolism. Luckily, nothing severe enough to be alarming but generalized enough to really be a mess to figure out. We've just been throwing things at it to see if something sticks.

Yes, I had read that with the mutation there's such a range of expression. I find it hard to wrap my mind around the concept. 

lablover78

Your supplement is perfect for MTHFR! I watched some YouTube vlogs last night and caught up on the facebook page I mentioned and was reminded that the other thing we have difficulty with is absorbing b-vitamins so we need a broken down version which your dr has identified perfectly. I don’t think the Thorne are anything special. Other ladies on the fb page are on a Seeking Health prenatal - I’ll try to find the link. 
Regarding our wheat being sprayed - it’s crazy right? Apparently they started back in the 1970s to better support pregnant women (I read this somewhere but of course check my facts) but this was long before the MTHFR was discovered and they say there is a pretty high percentage of Caucasians with the mutation. 
Your diet seems great! I need to be better at preplanning my snacks and meals during the week. My friend’s Husband has lost 30 lbs on the keto- we have never seen him so fit and he talks about how he cooks his eggs in bacon grease LOL. 
It sounds like you are in great hands with your naturopath. I have realized that IF is more of an art than a science and it seems to take a lot of personalized research. I hope the supplements are what makes the difference for you! 

BenJay

Wow, your DH lost 30 lbs!? That's amazing! I wish my gut was more happy with the higher fat, but it seems to really like full fat yogurt. Tempted to try a good pre- and pro-biotic to see if that helps settle things. 

Ever since the Metformin and additional supplements, I have been less bloated, my face is less puffy and red, and I feel that my joints are happier (ankles aren't as swollen). It wasn't severe enough to be anything other "looking fat". It all came on pretty evenly. I don't weigh myself just because I get too fixated on making a change and fixing, instead of being patient and letting my body sort it out. (Immediate gratification, always!)

I am tempted to switch my current prenatal since it does contain folates I can't use. I don't think my particular mutation makes the homocysteine, it's just that I need a methylated version to fully absorb it. This is definitely going to be brought up at my next doctor's appointment, as well as vitamin D and magnesium supplements. 

Thank you so much for sharing your wisdom! It's been a lonely process because most people don't have the same issues I do. It's way science-y and unique to the individual. I am convinced IF, autoimmune, and hormonal imbalance is not well understood, almost a fringe science. 

BWhitta

Thank you, sweet friend, yes I was here for two BFPs.  Last time, I over-confidentally moved to the March moms page...it was hard.  But yes I am so happy to be back and in a selfish way I’m happy to see some familiar faces 2018 will be our year!!!!!!!!!

lablover78

@BWhitta your response on MTHFR makes me think you must have been positive for a1298c instead of C677 but you may want to double check since something as little as baby aspirin and a blood thinner can resolve RPL with C677 from what I understand. I am really hoping your rainbow makes his/her appearance sooner than later! I stopped everything for the better part of this year - so I get it. Sometimes we just need to take care of our hearts and forget about all the tracking/planning/researching- it’s all too much sometimes. Why can’t we be those girls who- oops the condom broke and bam!! 
Yes @BenJay SO science-y and over my head but I keep on trying lol! Thanks for letting me share- looking forward to hearing any suggestions you come across too!