Gotten mixed messages about treatment of MTHFR


#1

I miscarried at 7 weeks and had a D and C. There were no chromosomal anamolies or infections found so my RE ordered a RPL panel. I was diagnosed with heterozygous MTHFR. My RE said it was simple to treat by taking Folgard (prescription folic acid/ B vitamins). However, I have gotten mixed messages about treatment of MTHFR. Does anyone have success stories using Folgard or another treatment method. I am anxious to try another IUI, but I’d like to know how to proceed with the MTHFR.


#2

First of all, I am really sorry to hear about your miscarriage. I hope you are able to heal soon and proceed with your treatments. As for the MTHFR, I had a successful twin pregnancy and took Folard 2x daily and a baby asprin (81mg) daily. I wish you luck in the future and hope you have a succesful pregnancy!

Jessica


#3

Jessica, congratulations on the twins! It makes me feel better to know you had success when taking folgard. Success stories are so helpful in easing my anxiety.


#4

[QUOTE=IFalphabetsoup]I miscarried at 7 weeks and had a D and C. There were no chromosomal anamolies or infections found so my RE ordered a RPL panel. I was diagnosed with heterozygous MTHFR. My RE said it was simple to treat by taking Folgard (prescription folic acid/ B vitamins). However, I have gotten mixed messages about treatment of MTHFR. Does anyone have success stories using Folgard or another treatment method. I am anxious to try another IUI, but I’d like to know how to proceed with the MTHFR.[/QUOTE]

I also am in the process of miscarrying - again. I was 7 weeks pregnant with twins and at the 8th week u/s Baby B no longer had a hearrtbeat and Baby A’s would come adn go. I assume when I go in tomorrow for another u/s Baby A will be gone and I can proceed with teh D&C…

What is RPL? Should I ask the RE to run that too? What is MYHFR?


#5

Jordanna,

First of all, I am so sorry for your losses. My heart goes out to you, I know it is difficult.

An RPL is a recurrent pregnancy loss blood panel. It basically is a lot of bloodwork to look at possible causes for miscarriage. It is usually done after 3 losses, but sometimes after two. My RE just ran it after one because he knew I wouldn’t be able to try another cycle without exhausting all possible answers first. The RPL looks for different blood clotting disorders (that are treated with blood thinners like asprin) and genetic mutations. I have MTHFR, which is a genetic mutation where you cannot process folic acid and B vitamins, which are needed to sustain pregnancies and prevent neural tube defects in the baby.

Since you’ve had two losses, I would absolutely ask for an RPL. I was told it could be coslty (about $3 out of pocket), but my insurance covered most of it since it is considered diagnostic and not related to infertility. Honestly, I would have paid the $3 out of pocket if I had to just for piece of mind. I am nervous about the diagnosis, but glad to know it’s there and that we can treat it. I wish you the best.

[quote=jordana]I also am in the process of miscarrying - again. I was 7 weeks pregnant with twins and at the 8th week u/s Baby B no longer had a hearrtbeat and Baby A’s would come adn go. I assume when I go in tomorrow for another u/s Baby A will be gone and I can proceed with teh D&C…

What is RPL? Should I ask the RE to run that too? What is MYHFR?[/quote]


#6

IFalphabetsoup – I am a carrier of MTHFR which was noted on my initial RE workup, which included genetic bloodwork (in my hometown). I am now established at CCRM with Dr. Sch, who increased my folic acid from 800 mcg daily to the Folgard 2.2 mg twice a day.

I was told that being a carrier doesn’t mean i have the actual condition, but better to be on the safe side and take extra folic acid.

I start IVF #1 in 1/2012!

I hope this helps :slight_smile:


#7

Hi Asics! Unfortunately, I am not a carrier, I actually have the gene, which I got from each of my parents. I am doing my best to trust my RE. I have a lot of respect for him and know he has much more experience with this than me. I’ve read scary stuff about it so I start to worry of course. I am prescribed Folgard once daily until I’m pregnant and then I am to take it twice daily. I pray it really is that simple!

[quote=Asics]IFalphabetsoup – I am a carrier of MTHFR which was noted on my initial RE workup, which included genetic bloodwork (in my hometown). I am now established at CCRM with Dr. Sch, who increased my folic acid from 800 mcg daily to the Folgard 2.2 mg twice a day.

I was told that being a carrier doesn’t mean i have the actual condition, but better to be on the safe side and take extra folic acid.

I start IVF #1 in 1/2012!

I hope this helps :-)[/quote]


#8

I was diagnosed with compound hetero MTHFR yesterday too! I suspected I had it before my results even came in. During my pregnancy very, very dry skin, and the constant urge to pee, even when I just went. Before I was pregnant, I was diagnosed with hypothyroid, and microscopic blood in my urine, although no stones or urinary tract infection. The days leading up to my miscarriage (which was only detected on ultrasound), I had horrible pressure in my bladder all the time, and a lot of blood and protein on the urine dipstick. Now, I know these are all symptoms of MTHFR.
For my next IVF, I will be on BA and heparin, and a special folic vitamin, such as Folgard.


#9

luv- I had the same symptoms during my pregnancy! Itchy skin and urges to pee, especially the day before the “bad news ultrasound”. Plus, I didn’t have the typical early pregnancy symptoms, which worried me. I didn’t know about MTHFR before, but before the RPL, I was worried that my vitamins didn’t have enough folic acid. I suspected a nutritional problem for sure.

I am not diagnosed with hypothyroidism, but I wonder if I have that too. I do have hyperprolactinemia and it is often associated with hypothyroidism. I am planning to have that checked too, just in case.

My RE didn’t prescribe BA or heparin, just Folgard.

quote=luv4rachela]I was diagnosed with compound hetero MTHFR yesterday too! I suspected I had it before my results even came in. During my pregnancy very, very dry skin, and the constant urge to pee, even when I just went. Before I was pregnant, I was diagnosed with hypothyroid, and microscopic blood in my urine, although no stones or urinary tract infection. The days leading up to my miscarriage (which was only detected on ultrasound), I had horrible pressure in my bladder all the time, and a lot of blood and protein on the urine dipstick. Now, I know these are all symptoms of MTHFR.
For my next IVF, I will be on BA and heparin, and a special folic vitamin, such as Folgard.[/quote]


#10

Yep, that’s what I’m hearing more and more. It’s suspicious when you feel the need to pee, even when you haven’t left the bathroom from going 2 seconds ago. I too worried about my lack of symptoms…never had morning sickness, and not really sore boobs EITHER(although my boobs are huge, and I wondered if they were just too big to be affected by hormones, LOL).

My Re said the BA and heparin do not hurt. He added it to my Feb protocol before I even got the RPL panel done. I read on line that it helps aid implantation, since MTHFR can inhibit that, and is useful in the 1st trimester, if not the whole pregnancy. Have you seen the RPL thread in this forum? It’s great, with a lot of info about MTHFR :slight_smile:
:grouphug: