PCOS/MTHFR/ Blood Disorders & Other Challenges

keikilove · November 2019

This is a thread for asking questions and sharing resources on all issues impacting TTC. Since there are various issues that may make TTGP a little harder for some there aren’t any strict rules on what can or cannot be discussed here. This description (and rules) may evolve as this thread evolves. *Trigger Warnings: There may be times when Loss or Living Children are mentioned. Please use a *TW* to let the reader know a potential trigger is coming.*End TW*.

keikilove · November 2019

MTHFR is a hot-button issue amongst many doctors. Some believe the very common mutation can contribute to problems TTC or result in Repeat Pregnancy Loss, while other doctors say the mutations are so common (30% of the population) that if it was really that serious more of the population would be affected when TTC.
What is agreed upon is that people with any MTHFR mutation have a hard time converting man-made folic acid into the form that can be absorbed by the body: folate. Women with MTHFR mutations should take a prenatal with Folate or Methylfolate instead of folic acid.

Some good brands are:
Thorne Prenatal
Best Nest’s Mama Bird
MegaFood’s Baby&Me 2
Smarty Pants Gummies
Honest Company

mamanbebe · November 2019

*lurking*

I have compound heterozygous MTHFR (one copy of each gene mutation) and what I’ve been told is that it can impact how you break down nutrients in general, leading to low progesterone and other issues. This can also be tied into leaky gut syndrome. My fertility naturopath recommended I be on non-acidic diet (no to sugar, gluten, caffeine, certain fruits and veg, non organic or grass fed meat, etc) and to take Nac in addition to a high quality prenatal, and some other supplements like B12 shots, tinctures, maca, etc. It was exhausting but seemed to help a lot.

thankfullyamama · November 2019

Newly diagnosed with PCOS and awaiting further bloodwork. Looking to hear from others who have the same diagnosis, how they were diagnosed and what the treatment plan has been!

keikilove · December 2019

@mamanbebe Thank you for adding that helpful info. I only have one mutation of MTHFR; I also take N-A-C, the B vitamin combo you mentioned, & a limited diet same as the one you listed. My OB’s office tells all patients with an MTHFR mutation to take 1 baby aspirin a day to help with the blood-clotting issues that can be exacerbated during pregnancy.

@tryingktogku I hope others will chime in here to help support you with your questions. As I mentioned in the other thread, my RE recommends that many of her patients—especially those with PCOS—take Ovasitol. Ovasitol is the name brand that can be ordered straight from the company Theralogix. You can also buy it at the health food store: it’s a combo of myo-inositol and d-chiro-inositol. It helps with egg quality, balancing hormones (PCOS), and managing blood sugar.

gingermama29 · December 2019

@tryingktogku can't add much with my experience with treatment at this point but I got diagnosed with PCOS officially nearly 5 years ago (though I had suspected I had it for much longer). My main symptoms involve crazy long (and sometimes anovulatory) cycles and being overweight/struggling with weight gain.
Weight loss has so far been my best way of managing my PCOS (but it's crazy hard!). Prior to losing close to 10% of my body weight a few years ago, I went over 3 years without a cycle at all after I went off BC.
I'm super curious to hear more about some of these supplements from others. I wonder if it would be worth a discussion with my doctor eventually.

bluetickgal · December 2019

@tryingktogku I was diagnosed with PCOS in April 2018. I always knew something was wrong though, because I would go 6 months or more without a period. I went to the doctor maybe 10 years ago, and they basically said I was fine...but they could put me on BC to regulate me. I didn’t want to do that then (honestly, I didn’t hate the lack of periods...and a doc said I was fine, so I went with it). I had the Nexplanon for a couple years, and had it taken out in June 2017 I think and my OB said I could possibly get pregnant immediately. We were “trying” after that (I don’t even count that in our trying months, because it was basically pointless). I didn’t have a period until February 2018, so I knew I wasn’t magically fixed. I went and had a full work up including BW & US that confirmed PCOS in April 2018. Because we were wanting to get pregnant very soon, my doc gave me meds to bring on my period and then started me on Clomid in May 2018 (which was unsuccessful 2 cycles in a row). She had mentioned that she could put me on Metformin at first, but that would take longer...so we opted for the Clomid at first. She later added in the Metformin to be taken daily, and I was switched from Clomid to Letrozole (which I ovulated on once they increased the dose to 5mg). I still take the Metformin daily and take the Letrozole during CD3-7 every cycle, and I ovulate each month now. *TW - this med combo has helped me get pregnant twice, but unfortunately both have ended in losses. - End TW* I’m super encouraged/hopeful that our time is coming! Sorry that ended up being a book! Please let me know if you have any questions or just want to chat! My PCOS journey has been all about TTC...but once I was diagnosed, I realized I had so many symptoms that were connected including weight gain, headaches, and acne. I’m sorry you have this diagnosis, but I hope you can work with your doctors to figure out the best way to regulate/manage it for you!

thankfullyamama · December 2019

@keikilove I am taking a Women’s Sense PCOs supplement which has the same ingredients as Ovasitol but also folate and B6

@gingermama29 that’s great you lost that much weight! I’m still in a healthy BMI but have a seriously difficult time keeping the weight off

@bluetickgal thanks for your story! I am so sorry for your loses, how long have you been doing the same treatment for? How does your SO deal with the diagnosis! Have you told people?

I’m currently taking a naturopath route to battling this PCOS because my MD won’t do anything medical until we’ve been trying for a year still so I’m on
- women’s sense PCOS supplement
- Ubiquinol
- PMS SAP
- Sealicious Omegas

which are all natural and my naturopath has recommended trying to a high fat low carb diet to help with the insulin sensitivity.

In hindsight I’ve always had PCOS. My first period at age 12 lasted 2 weeks then I didnt have another for 3 months then that lasted 10 days and I was put on the BCP “to regulate my periods and acne” and have been in the pill until 6 months ago ( total of 11 years)

unfortunately after coming off the pill the acne has come back, I have been having mood swings, and excess hair growth (two black chin hairs lasers off ASAP lol) although my periods have been very normal In length and blood loss! I have had anovulatory cycles and long cycles >35 days.

The hardest part for me honestly is telling family members I have PCOS because they don’t understand the disorder. My husband also does not really get it but I kind of love his ignorance is bliss approach because he is a ray of sunshine when it’s making me sad lol

bluetickgal · December 2019

@tryingktogku thank you! I have done the Letrozole/Metformin combo for 8 cycles. *TW - My cycles after loss were non-medicated and I was benched. - End TW* MH has been super supportive from the very beginning! It seems like the problems are all on my side, but he views it as “our” problem! He has been pretty open to learning about all of it, and he probably knows about as much as I do about everything PCOS and TTC. I have a couple of friends that I’ve talked to about TTC and our losses, but we have not shared with any family at all! We’ve said we will share with them once we are successful, but we don’t want the extra stress/worry on our parents. We are to the point that we feel like they may all suspect that things aren’t happening easily for us, but they have respected and not pried too much. I’d say tell your family when you feel ready! Hopefully they will be supportive even if they don’t full understand! Sometimes I feel like we are hiding something really big from them, but we’ve decided it’s the best thing for us to wait! Awe, I love what you said about YH being a ray of sunshine for you! 💜 That kind of stinks your doc won’t do any treatment until you have been trying for a year, but I hope you are successful before then!

thankfullyamama · December 2019

@bluetickgal I don’t know how I’ve missed your reply! That’s Great that YH is so supportive with this! My doc has finally referred me to a OBGYN after some more bloodwork but we don’t have a RE anywhere near where I live so I’m interested to see if she’ll be any help at all! Wondering if you’ve found anything to help with the hormonal acne? It’s super bothersome!

Also I’ve been listening to a lot of podcasts lately and “the PCOS nutritionist” found on Spotify has said they LH/ OPK strips are practically pointless for women with PCOS which I find interesting! Has this been the case for any of you?

bluetickgal · December 2019

@tryingktogku no worries lady! We treated with an OB for a year before being referred to an RE...started all the meds there first, and got my cycles regulated. Hopefully your OB will be able to treat you and regulate your cycles as well. Unfortunately I haven’t found much to help with the hormonal acne...except some good concealer! 😂 Most of mine is cystic acne...which you can’t even pop, so I just have to let it run it’s course for the most part. As far as OPK’s go, I started out using them when I first began treatment and they were so frustrating...they were always a little positive and I seemed to have a super short surge. I stopped using them a few cycles in. I started them back this cycle, and it was so much better. It was very obvious when I got my positive. I don’t know if it’s because the medicines have balanced out my hormones enough or what.

keikilove · December 2019

Adding some new info I just learned re: Anti-Ovary Antibody.

Apparently, the more times one undergoes IVF, the more likely the body is to develop Anti-Ovary Antibodies, which can create problems for implantation etc. There is a test for AOA, and the treatment is steroid meds such as prednisone, or intralipids or IVIG. Here’s just one of the articles I found:

https://austinpublishinggroup.com/invitro-fertilization/fulltext/ajif-v2-id1022.php

thankfullyamama · December 2019

Just wondering if anyone has taken Vitex or soy isoflavones for their pcos? My naturopath has given me Vitex which I think may have extended my luteal phase (yay) but I’ve also heard that soy isoflavones can help you ovulate earlier? But you can’t take them together so next cycle im not sure if I want to stop the Vitex and try to soy or just continue with the Vitex

keikilove · December 2019

@tryingktogku I took Vitex for a long time this year. It seemed to instantly extend my short cycle by a couple of days, which I was happy about. I ran out a couple months ago & haven’t restocked, & have definitely had weird cycles since then—but I’ve also added lots of other meds. My RI said to stop the Vitex once PG, as it can interfere with estrogen/testosterone. I haven’t tried the soy anything, as my RE said to stay away from soy due to its high levels of estrogen.

thankfullyamama · December 2019

So you’re not supposed to take Vitex with PG? I have low progesterone and had a short ish luteal phase so my naturopath gave me the Vitex but I’ve just been reading about soy isoflavones and apparently they can act like a natural Clomiphene but you can’t take them together. I’m hoping she’ll give me a RX for progesterone so maybe I should stop Vitex once Aunty flo comes 🤷🏻‍♀️

@keikilove

keikilove · December 2019

@tryingktogku My naturopath said Vitex was fine to continue during PG, but my Reproductive Immunologist said not to, as it can cause too much estrogen & then throw off the levels of testosterone & potentially mess with baby’s sex hormones. So I decided to stop Vitex after O. As for soy, everything I’ve read says to avoid it before O as the estrogen could delay O, but it’s ok after O because it can help with thickening the lining, supports healthy PG, etc.

thankfullyamama · December 2019

@keikilove sooo much information out there! I’m just taking the Vitex once a day right now, I have an appt with my naturopath in the new year and am thinking she’ll give me progesterone cream for post O, but I wish I could O earlier than CD20 lol so I was thinking the soy product may be nice to try out for that reason.
https://www.babycenter.com/404_can-soy-isoflavones-help-me-get-pregnant_10364266.bc

this is how it’s supposed to work!

NYTino24 · December 2019

@tryingtogku I used to take Vitex, but stopped once we started fertility treatments.

keikilove · January 2020

@tryingktogku This is the original thread where you should ask your question. This post is going to be an ongoing one for posterity instead of starting it new each month. I’m sorry you’re still dealing with the cycle that never ends!

thankfullyamama · January 2020

@keikilove sorry! I started a new post by accident so I just thought I’d do an updated one of these for the new year

keikiluck · May 2020

Cross-posting for reference. A fairly comprehensive resource on Reproductive Immunology. Be sure to explore all the tabs. There is a list of doctors in every U.S. state who are familiar with/supportive of RI. There is also a list of international doctors who do this work.

https://www.immunologysupport.com/do-i-have-an-immune-problem.html

keikilove · September 2020

@christin83119 You might find this thread useful as well.

PS: In your original question you also mentioned taking Mucinex. Some people do this to increase Cervical mucus. Others do it as part of an anti-histmanine protocol if they suspect that they have an allergic reaction to implantation.

akoros · October 2020

@bumblebee0210 Some of the information in this thread might be helpful, re: our conversation in the daily thread.

keikilove · January 2021

Sharing this for info on Reproductive Immunology and RPL testing. The various tabs at the bottom of the page have a lot of useful information.

https://www.infertilitylab.com/immunological-testing

keikilove · February 2021

Adding another comprehensive resource on Reproductive Immunology. These are the 4 main providers in the U.S. There are a few others in the U.K., Australia, Greece.

http://www.repro-med.net/

https://www.rfuclinics.com/our-providers/kwak-kim-joanne/

https://preventmiscarriage.com

https://derbalari.com

keikilove · March 2021

Below is a comprehensive list of tests to ask for if experiencing repeat loss or IVF failures. Also, the TTC bibles are “Taking Charge Of Your Fertility” and “It Starts With The Egg”. For those having a long journey to their take-home baby, this book is invaluable:

“Is Your Body Baby Friendly?: How "Unexplained" Infertility, Miscarriage and IVF Failure Can Be Explained” https://www.amazon.com/dp/0978507851/ref=cm_sw_r_cp_api_i_4MO9Eb1E24Q4M

LIST OF TESTS FOR RPL PANEL

- Activated partial thromboplastin time (aPTT);

- anti-thrombin III activity

- beta 2 glycoprotein1 IgA, IgG, IgM;

- dRVVT

- Factor II

- Factor V Leiden

- Factor VIII
- Histamines

- MTFHR Mutation

- Natural Killer Cells

- Protein C activity

- Protein S (total)

- Protein S antigen (free)

- Protime (prothrombin)

- Partial Thomboplastin Time

- Rh blood type

Hormonal

- Thyroid Panel (TSH, T3, T4, T-Free)

Immune

- AntiOvarian Antibodies

- Antiphospholipid Antibodies: anti-phosphatidylserine (IGG/M/A)

- Antiphospholipid Antibodies: anti-cardiolipin (IGG/M/A)

- Antiphospholipid Antibodies: Lupus anticoagulant

- Plasminogen activator inhibitor-1 (PAI-1) activity;
- Leuokocyte Antibody Detection (LAD)

Other

- DHEA-S

- Vitamin D
- Progesterone

- Karyotype

- Semen DNA fragmentation

- SIS for uterine polyps, cysts fibroids

- ERA

- ReceptivaDX (BCL6)

- Myriad Foresight Analysis

- Food Sensitivities Test

- Heavy Metals Hair Analysis

- GeneticGenie.org Analysis

inthewoods23 · March 2021

@keikilove I'm kind of tempted to get that book to see what it says. Considering how I've gone gluten and dairy free for the most part and did get KU once a few months into it, is there more I can do or did I just have a case of bad luck.

acleverusername · March 2021

@keikilove Thank you so much!!! You’re a fertility goddess.

kiki047 · May 2021

@keikilove I don't fully understand all the RPL requisitions on the form but maybe this will make more sense to you. Based on your list it looks like he covered quite a few of the big ones. I'm not seeing anything for NKC activity though.

- HbA1C
- Prothrombin Time (INR)
- Lupus anticoagulant
- Anticardiolipin Ab lgG lgM
- B2 Glycoprotein I
- Prothrombin Gene Mutation
- Factor V Leiden
- Anti Thrombin III
- Protein C
- Protein S
- Homocysteine
- ANA
- Karyotype

I bought the book you recommended too, looking forward to diving into that when it arrives next week.

inthewoods23 · May 2021

@kiki047 thanks for bringing this thread back up because I decided I should get the book too!

keikilove · May 2021

@inthewoods23 Oh, I’m eager to hear what you think of the book! It’s a beast to hold, but covers most of the info in the first half of the book, then it’s testimonials and references.

@kiki047 I apologize—I don’t know how I missed circling back to this. Yes, your test list looks really good. Lots of blood-disorder tests there, plus ANA & APS (the anticardiolipin, lupus, and beta-2 glyco). All Very important.

This may be more than you want to know at this point! But thought I’d put it all out there for you to think about. It can take awhile to wrap your mind around all this stuff. For NK cell testing, your RE can order through ReproSource or the Rosalind Franklin University lab (this is Dr. Kwak-Kim’s lab in Chicago). Some tests ordered at ReproSource are sent to RFU in Chicago—I’m not sure if ReproSource tacks on any extra fees and whether it’s better to just order directly through RFU.

Around the world doctors send their patients’ bloodwork to the RFU lab—women refer to them as the “Chicago bloods” to mean they got their NK cells/RI testing done. I’ve seen that Canadian women in my RI groups also have their bloodwork sent to either ReproSource or RFU lab, so not sure if you can even get your NK cells tested in Canada.

Finally, I’ve seen many mention that they go to Markham Fertility Centre in Toronto for RI support. Olive Fertility in Vancouver is RI-friendly but they don’t do the RI diagnosing or treatment themselves. Many Canadians work with an American RI remotely if they can’t get into Markham. Your RE sounds wonderful. If he’s open to order the testing for you and then order any necessary meds for you, you don’t necessarily need an RI. Your RE would just monitor your levels and you’d send your bloodwork to either of the labs you select to see how things are going.

inthewoods23 · May 2021

@keikilove so far I'm really liking it! I think I stopped after chapter 8 last night so I'm about 100 pages in. I need to go back through this last chapter to check and see what I've already been tested for when they ran those various tests/panels after my FET failed. Pretty sure I do have a good number of results for tests mentioned in the book but likely not all. If I was interested in having more bloodwork for the additional things in the book (like NK cell testing), who would I best talk to? My OB or RE? Or would I contact Dr. Kwak-Kim? Chicago isn't super far for me so if I had to go there for the testing that would be doable for me.

keikilove · May 2021

@inthewoods23 Yes, any doctor can order the tests for you. They’d just need to call either lab I mentioned and make sure they have the correct requisition form. The tricky thing is whether your doctor can interpret your results or not. My RE could not interpret my NK cell results or my LAD or LIT results. But if you ever want to join the online Reproductive Immunology Support FB group the brilliant ladies there can help you interpret anything.

If you are close to Chicago it would be amazing to just become a patient of Dr. Kwak-Kim. She accepts almost all insurance and it’s all coded as immunology so most of it is covered by insurance. However, she usually has a 6-month waitlist so you would want to get on it now. If you end up KU before your appointment they will try to squeeze you into a cancellation ASAP. Dr. KK also trained a doctor who recently opened his own RI practice in Detroit. He does not have a wait and many people are having success with him. (I will re-paste the info of the docs below, but this time I’ll add a tiny bit more info.) Some RIs require just the first visit to be in-person, and some don’t require an in-person visit at all, just ongoing bloodwork monitoring. Please keep asking questions if you want any more info. It took me 2 years to become well-versed in this stuff, so happy to help save you some time!😉

These are the 4 main providers in the U.S. There are a few others in the U.K., Australia, Greece. Also some in the Philippines, Spain, etc.

http://www.repro-med.net/ Alan E. Beer Center in California. Dr. Beer passed away but his work continues under Dr. Stricker. Dr. Beer wrote the book “Is Your Body Baby-Friendly?”

https://www.rfuclinics.com/our-providers/kwak-kim-joanne/ Dr. Kwak-Kim developed many of the RI protocols by working with and alongside Dr. Beer & Dr. Braverman. She accepts insurance.

https://preventmiscarriage.com Dr. Braverman recently passed away. His work continues at his New York City/Long Island clinic under his partner Dr. Vidali.

https://derbalari.com Dr. Derbala trained under Dr. Kwak-Kim. He just opened his own RI practice in Detroit, MI last year & does not have a long waitlist.

inthewoods23 · May 2021

@keikilove you are a rockstar!! Thank you SO much!

keikilove · May 2021

@inthewoods23 You’re so welcome, my friend💗

@kiki047 Closing the loop on Markham Fertility: Someone who gets RI treatment there just informed me that they do all RI treatments including subcutaneous IVIG (called SCIG) and LIT treatment, which is amazing for you Canadians that might need it (we can’t get access to it in the U.S.). They also test NK cells and all the other tests we’ve discussed; they send them to RFU labs in Chicago. It sounds like an excellent one-stop shop!

acleverusername · May 2021

FWIW, a woman in my fertility therapy group went to Dr Braverman in NYC and he ran a bunch of tests on her and basically told her she has endo; referred her to a doctor at Stanford (locally) and when she went in for surgery, it turned out she had Stage 4 endometriosis that no one had diagnosed. So, a vote of confidence there for RI.

@keikilove now I need to pick up that book. Haha.

keikilove · May 2021

@acleverusername Oh, your research-y mind will find it fascinating!😉

kiki047 · May 2021

@keikilove thank you so, so much for all your resources. We do all of our procedures through Markham Fertility, so while I'm not a patient there directly, I believe I do have access to their services through my RE. My WTF appt is next Friday so I'm hoping that we can get the ball rolling if there are other things that need to be done before we can move on. He did mention IVIG and LIT at our last appointment, and did say that they were cost-prohibitive and experimental but he was the one who brought it up and didn't seem against it per se, his policy has just always been to do more with less because he runs his practice very lean and doesn't push anything more than absolutely necessary. At this point, going into our 5th transfer, I'm willing to go all in.

acleverusername · November 2021

Gonna bump this thread up since otherwise no one will ever find it. I'm super excited that TEW just had Dr. Andrea Vidali on her show to talk about Reproductive Immunology. Everyone should have a listen!

acleverusername · February 2022

I've started digging into all things reproductive immunology and found a good lecture on Maternal KIR and Fetal HLA-C. It's a good "Intro To" type of lecture: https://www.myivfanswers.com/video/nk-cells-and-ivf/

(Also that site has a lot of additional lectures in various categories that others might find helpful.)

acleverusername · May 2022

I can't think of a better place to put this. Came across this really helpful explanation about how PROGESTERONE works.

https://www.reddit.com/r/infertility/comments/d5ugl3/what_ive_learned_about_progesterone_in_general/

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