Showing posts with label MTHFR. Show all posts
Showing posts with label MTHFR. Show all posts

February 21, 2012

Long Awaited Answers

I'm not sure I had ever been more excited to go to the doctor than I was today. Hold on, I take that back. Baby 1's 1st ultrasound was the most exciting moment of my life until I found out I had miscarried. But any who, I went to the endocrinologist today and met one of the most amazing doctors I have ever had the privilege of directly dealing with. After going over my recent blood work and all of my symptoms (which includes severe facial acne, facial hair (blonde, thank GOD), oily skin, irregular cycles, high testosterone levels, and infertility) she was able to diagnose me with PCOS (Poly Cystic Ovarian Syndrome)!!!

It might sound crazy but I could not be more excited to finally have someone confirm with me that there IS something wrong with me hormonally. In June of last year I had a dermatologist tell me that my acne was due to hormones. In August I had an acupuncturist tell me many of my symptoms were hormonal (excessive sweating and body heat) I wasn't sure how to approach my RE about this so it kind of just sat in the back of my mind. I certainly wasn't as educated about the reproductive system as I am now, otherwise I would of spoken up about it.

So, rather than Metformin, which is what most women seem to be treated with, my Endo chose to put me on the brand name GLUMETZA. Unlike immediate-release metformin, GLUMETZA is released slowly and steadily over several hours. This delay in the release of the medicine may result in fewer stomach-related side effects, such as nausea, in the 1st week of taking the medication. She wants to get me up to 2000mg a day, so here is my future dosing schedule:

Week 1: 500mg 1x day
Week 2: 1000 mg 1x day
Week 3: 1500 mg 1x day
Week 4: 2000 mg 1x day



She also advised she would like me to reduce my carbohydrate intake to less than 120g daily and my protein up to 60g daily (at least). She says that will boost my weight loss since I'm currently at a standstill after losing 20lbs.
**Also, She said that my initial weight gain is what actually brought the PCOS to the surface. Since I have been off of BC since April 2010, the weight gain triggered it. And even after losing the 20lbs it won't completely go away. It has actually made it worse for some strange reason. It gets worse each and every week.

SO, my other good news involves my 2 MTHFR gene mutations, which my Endo happened to know a lot about. For those who don't know what this is......it's a blood disease that deals with blood clotting and the inability for my body to metabolize Folic acid. She explained that the Folic acid that I currently have a prescription for (1mg 2x daily) is considered synthetic Folic acid. She wrote me a prescription for NEEVO DHA. This is a prenatal that also contains L-Methlyfolate, nature’s active form of folate as found in leafy green foods. L-methylfolate is superior to synthetic folic acid. Several months ago one of the BB Blog readers commented on my post about this so it has always been in my mind. And to my surprise today my Endo mentioned this so I became pretty excited. This will be taken in place of my existing Pre-Natal 1x daily. On a side note, she did tell me that these mutations were most likely the cause of my 3 miscarriages (not the 1 tubal though). No one has yet to tell me that (not even my RE) so it was such an amazing feeling to hear that news. Nearly 2 years I have been waiting to hear that.

If you also unfortunate enough to have 2 mutuations of the MTHFR gene and would like additional information, here is the brands website:
http://www.neevodha.com/

Well, that is all I have for now, I will be very surprised if many make it through reading this entire posting. If you do, I much appreciate it :) So I end this cold rainy day with hope in my heart. Sad songs didn't sound so sad today, and my optimism is at the highest it has been in a very very long time. Please keep me in your prayers that I will soon get my baby back. I know he is up there waiting for me to bring him back down :) Let's hope the 5th time's a charm!!

November 21, 2011

Please Dont Tell Me This Is Happening Again

So I should probably get you guys updated on where I am since my last Ectopic Pregnancy in August. It seemed like I was track until I talked to my doc today. And Please keep in mind…..I am FERTILE MYRTLE (I’ve gotten knocked up every time I’ve TTC)…….I just can’t carry.

August 2011 -Tubal Pregnancy. Received a shot of Rhogam (because I have O negative blood) and an injection of Methyltrexate. I was advised to wait 90 days for the Methyltrexate to exit my system before TTC again. Progesterone was tested at this time and was at a 1!

October 2011-Finally got all the basic blood work done that was ordered by my infertility specialist. Results: 2 mutations of the MTHFR gene. Fix: 1mg of Folic Acid twice daily. Went to the chiropractor for the first time in my life to find out that I have significant scoliosis and an issue with my tail bone/last vertebrate causing my nerves to be twisted and stretched in my lower spine. Since then I’ve been seeing the chiro 3x a week which is supposed to help with fertility.

November 2011: Used OPK’s until I got a positive ovulation surge. FWP for several days prior to and two days after the surge. I also began vaginal prometrium 2x daily 2 days after the surge. I was on the prometrium for 12 day with AF expected 2 days later. She didn’t show so I took a HPT and got a BFN! 3 days later, AF arrived and was fairly heavy the first 2 days. However, it turned brown and spotty. This can’t be right considering I was on the prometrium!

Today: Concerned and paranoid of another tubal pregnancy, I called my doc and explained my AF. She too concerned, ordered me in for Beta levels. So now…..I wait……with fear. If I have to wait another 3 months to try again I just might lose my mind……seriously.

PLEASE cross your fingers for me that it’s not what I think it is :(

November 20, 2011

Buckeye Bud - An Introduction to My Journey

I am SO excited to not only be the newest addition to this blog but also to be joining an amazing group of women with similar life struggles. I never imagined how hard this journey would be or why God would choose me to be a passenger on this unfair journey. Here is a quick wrap-up about how I got here today.

My first pregnancy occurred in July 2010. I went in for my ten week Ultrasound on a Friday and found out my baby stopped growing at seven weeks. I had a missed miscarriage that weekend and a DNC the following Monday. I was completely and utterly devastated beyond belief. I had never in my entire life felt pain to that magnitude. My life was over, my dream was destroyed, and the light at the end of the tunnel was 20 light-years away. Everyone I encountered seemed to say all the wrong things. “It wasn’t meant to be,” or “it will happen again just be patient” were some of the worthless rubbish I heard on a daily basis. People didn’t mean to be cruel; they just don’t know what to say in situations like that.

Three very long months later I got pregnant again. Shocker…another miscarriage at six weeks. Four months later I got pregnant AGAIN and had a miscarriage at six weeks. By this time, I was completely numb from the pain. I had cried so much over the past year that I was completely out of tears by the time I found out about an unexpected tubal pregnancy in August 2011. A persons mind is a very sensitive thing and for it to be beat up so much in so little time put me in such a deep depression I never thought I would find my way out. But hope has pulled me out.....it's all I have left!

My goal of joining this blog are to become a support system for other women in situations similar to my own. Helping others helps with healing my own self, so I am tremendously eager to get started!

-Buckeye Bud

September 9, 2010

Can't get pregnant, can't get unpregnant

I don’t want to spend too much time talking about the D&E itself. I will say that if you take away the heartbreak, the procedure is fairly simple and painless. We hadn’t told anyone about the pregnancy except my mom and my best friend, so we only had to break the bad news to two people. My mom had apparently told her friends, so she got to untell them as well.

My RE’s office needed to know if the defect was genetic in origin, so we had karyotyping done. Neural tube defects (NTDs) aren’t typically genetic, and ours was no exception (meaning it wasn’t the donor’s fault). I never did ask if the donor was allowed to cycle again. I did find out the sex of the baby, which I’ll refrain from sharing. (Mr. GB didn’t want to know.) I also received tiny footprints, which are tucked away safe for now.

(We don’t know what caused the defect. They say that NTDs can be prevented with folic acid. I’d been taking prenatal vitamins for years, but it wasn’t enough. At my request I was tested for MTHFR (a disorder that can cause difficulty in absorbing folic acid), and I don’t have that mutation. My homocysteine levels were also normal. I read NTDs are more common with IVF…I always wonder if the lengthy embryo transfer was the cause. I also read that hot tubs and saunas can cause NTDs, and I wonder if sunbathing was the cause, even though I sunbathed after the window for NTDs closed. It was probably just horrible bad luck. I’m taking 4 mg of folic acid now, just in case. I have a 1% chance of it happening again. I hope it doesn’t.)

As I was recovering from the D&E, I was more determined than ever to try again. In fact, I was filled with an odd sense of hope that’s really hard to explain. Maybe it was just a coping mechanism. I did have bouts of sadness and grief, but I was ready for AF to arrive and start a new donor cycle.

Except AF was nowhere to be seen, and my HPTs were still positive. And I was still bleeding, like for a month. Went back to the MFM’s office for an ultrasound but nothing looked suspicious. She gave me Cytotec/Misoprostol to try to flush out my uterus, but nothing happened. Mentioned the bleeding to my donor coordinator, who talked to my RE, who told me to come in for a hysteroscopy to look around. The camera showed that my uterus was filled with cobwebs (aka “products of conception”) and a second D&C was needed. My RE said I could get the procedure done at the RE’s surgical center, but we’d have to wait a month.

So we commenced waiting. Again. We’re talking 77 days between the first procedure and the second.

Surprise surprise, AF arrived 58 days after my D&E. I will spare you the details but let’s just say it was the worst period EVER. My RE still recommended the D&C, but the good news was that I got to go on the pill, which meant I’d finally have control of my cycle back and we were finally ready to start looking at donors again. YAY!

I had my second D&C on August 11, the same day we put down our donor deposit. In the next few days I’ll talk a bit about our selection process (my criteria changed dramatically), a slight setback, and where we are today. But for now, I’ve got to run upstairs for a Lupron shot!

To be continued…

Golden Bud

January 25, 2010

Be careful what you wish for.

Disclaimer: There are no pictures in this blog entry. I didn't write this to entertain. I cried almost every second I was typing. This isn't about being bitter, this isn't about being sad, and it most certainly isn't about trying to make people feel better about what we're going through. This is about life. Real hard honest painful unfair life. If you're looking for funny pictures and entertainment, you're going to have to look elsewhere.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Be Careful What You Wish For

When we got our male factor diagnosis, I cried. I told my husband that I would rather have something be wrong with me, so this didn’t have to be on his shoulders.

What an idiot I was.

Since I was a young teenager, all I have ever wanted in the world is to be a mom. All I have wanted to do is to take care of my babies. Raise them and have the best family I can have.

Now I’m 34 years old… and I’m being faced with the possibility that we might never have that family.

3 weeks ago, I found out that our first IVF cycle failed. I knew that I didn’t respond the way they thought I might. I knew that our embryos were pretty sub-par. But I also KNEW that I was over-suppressed from the lupron. I KNEW that with a different protocol, I would respond better, and my eggs and subsequent embryos would kick ass.

Dr Z had other ideas. Half way through my stims, he became convinced that I had diminished ovarian reserve (DOR), AKA really old sucky eggs. He said that if this cycle didn’t work, he was going to do some additional testing.

But I KNEW it wouldn’t be necessary.

I was so wrong. About everything. And as usual, Dr Z proves why we picked him as our doctor.

The tests came back. My AMH is 0.5. That sucks. It worse than sucks. It’s sucktastic.

He says that he's not ready to throw in the towel YET. He likened my ovaries to a baseball team. He said that I have the players, but it was difficult to tell what condition they might be in, and how many might be on the bench. I said, "Great, I'm the New York Mets" (and honestly, after being a Mets fan for my whole life, I should be used to the disappointment).

Dr Z said now that he knows what the problem is, he can treat me more appropriately. He said my ovaries are a lot older than I am... probably about 42 or so… and now he has to treat me like that. He wants to see how I respond to a new protocol (my nurse should be calling me later today with details). But he also said that if this next cycle doesn't work, his recommendation would be donor eggs (DE).

My husband and I had already had a LONG talk the morning before we spoke with Dr Z about where we were going to draw the line. I finally know where he stands with all of the options, and I'm relieved about that. He's okay with DE, but not donor sperm. Okay with domestic adoption, but not embryo adoption.

We won’t move on to DE until we get a second opinion. So, if IVF #2 fails, we plan on probably getting two second opinions: one at Colorado Center for Reproductive Medicine (CCRM), a leading center for ART, via phone consult and another at a leading medical center in Manhattan. Following those, we'll probably be moving onto DE.

However, DH is convinced that now that we know about these issues, IVF #2 is going to work.

I'm going to start acupuncture again, start seeing a chiropractor and we're going to try to go to an infertility counselor, because i'm really depressed. The IVF not working was bad enough - now I’m a devastated mess. There hasn’t been a day without crying since I found out. I don’t know how much more I can take.

There’s no question now that I’m in good hands. Dr Z clearly knows what he’s talking about. I can't imagine many people would have looked at me last cycle and said DOR. I thought I was just over-suppressed, but he saw my response and said, “Look, even with your normal FSH and normal antral follicle count (AFC), something is wrong here. This isn't because of medication. We need to run more tests.”

He was right. I hate it - but he was right.

He also said that my blood work came back positive for the genetic mutation MTHFR. I’m going to find out exactly which mutation tomorrow, when I get copies of my blood work. Dr Z says I don’t have to take any blood thinners, but he has me now on very high dose folic acid. I’m taking a total of 5mg daily. He says that he needs me on it for 4 weeks before we can try again, so we can still plan on cycling for March. I’ll have to continue taking the high dose folic acid as long as we’re TTC or pregnant… which right now feels like the rest of my life. Another complication of MTHFR is elevated homocysteine levels. However, my homocysteine levels are normal.

I’m sorry that this was so long. It’s all the information I have. I feel like all of my dreams are slipping away from me. It’s very easy for people to say “oh, it’s not bad news” and “oh there’s still hope” but this is the end of the world for me.

I’m 34 years old and my eggs are crap.

The worst thing about this is the not knowing. In the beginning, my evaluation was normal. Every single part of it. Dr Z says these tests are really expensive and the insurance companies won’t pay for them unless they can be shown cause, which the failed IVF cycle gave us. I wish we had known about this 2 months ago. Or 7 months ago when we went through our initial testing.

And I hate what this has done to me. EVERY girl I see whose only diagnosis is MFI, I think to myself “that’s what you think” or “for your sake I hope so”.


Because up until 2 days ago, MFI was my only diagnosis too… and I had all the hope in the world.

Now it will be a miracle if I can even use my own eggs.

From the top to the bottom in one phone call.

Be careful what you wish for.

January 23, 2010

My I to the V to the F is On!

Walk by FAITH not by SIGHT Corinthians 5:7

Oh Happy Friday
Having been on BCP's for the past 3 weeks, I was happy to go to Dr. B's on Friday to have my IVF Suppression Check, Ultra-Sound and Blood Work. I got the ALL CLEAR and received my IVF Calender and Nurse K told me what Meds she would be ordering for me from Freedom Fertility Pharmacy.

My Protocol
I will be on the Antagonist: Step-Up/Step-Down Protocol. I have PCOS and I will continue taking Metformin. I also have one copy of MTHFR C677T and a small amount of Annexin V Antibodies so I will be on low dose Predisone, one Baby Aspirin per day and Lovenox. The main benefit of the protocol is that women with PCOS tend to be at a higher risk of OHSS (Ovarian Hyperstimulation Syndrome)which can cause the ovaries to enlarge severely and require hospitalization. With this protocol Dr. B can trigger me with Lupron and prevent the risk of OHSS as opposed to triggering me with HCG, which can make OHSS symptoms worse.

Photography Credit


Moving Forward by Faith
Saturday my Meds arrived from Freedom Fertility Pharmacy and I start Stimming on Tuesday. I am praying that everything goes smoothly with this cycle and that God's will be done in me and Mr. Blessed Bud's lives...



 

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