Confused about treatment for MTHFR

[mvan]

Hi,

I just got my fasting homocysteine level back and it was a 9.8. My RE said that above 10.4 is high. I am gearing up for a FET and the dr. has not put me on b-vitamins (Folgard) and does not plan to put me on Lovenex or Heparin. I guess I'm just a little nervous about not doing those things as I've heard that even people with heterozygous MTHFR are placed on a treatment plan ( I am homzygous MTHFR but with normal homocysteine levels at the time).

So, why is it that some people with MTHFR are placed on a treatment plan and not others? Is it just to be cautious? I am trying to not worry, but of course I can't help it.

By the way, does anyone know if homocysteine levels increase quickly or do they increase over time?

Thanks in advance.

[LynnUS]

I think the answer is because some docs are more proactive and cover all the bases while others see all the meds as "overkill". I personally would strongly advocate at least the folgard as it is a known fact that MTHFR people do not absorb enough B vits and folic acid. The heparin can only help aid implantation, unfortunately many docs will roll their eyes and say "overkill" on that one. It's just so sad that oftentimes tragedy has to happen before some docs get aggressive w/their tx.
With a FET at stake though I sure wish your doc would reconsider!

Sorry don't know if homocystine builds quickly or over time. Hopefully someone here will have the answer for you!

Wishing you all the best!

Lynn

[Pecan]

Hi, I would agree with Lynn about some doctors being more proactive. I am hetero for MTHFR and was prescribed lovenox starting on cd6 of the cycle of trying to concieve in addition to the baby aspirin and folgard. I don't know how rapidly homocystine levels change, but I have heard that they can change with a pregnancy. Sorry I could not give you more specific details. Best of luck with your upcoming FET.
Pecan

[LeslieT]

(Preg/Child Ment)

I completely agree about being insisting with your doc you want to be on the Folgard. It's just folic acid/vitB6/vitB12, and can completely make the difference with clotting issues that can cause m/cs, since your homocysteine levels are very, very close to being over the line into high...just decimals off. There is absolutely no reason for you to spend the emotional heartache and $$ on an FET and have a m/c if it can be easily prevented.

I've had 3 m/cs...1 before my DD, 2 after. They finally identified my homocysteine issue and I'm currently 34 weeks pregnant with #2 taking Folgard the whole pregnancy. If I hadn't been on the Folgard, I probably would have m/ced again.

Interestingly I have elevated homocysteine but not MTHFR, so I'm not sure about the Lovenex/heparin question...I'll leave that to the other MTHFR ladies on this board who have alot more wisdom and experience about that than me. But at the very least he can put you on the Folgard right now while you're deciding on the Lovenex/heparin question.

If he continues to refuse to prescribe Folgard and you want to stay with him (I would be pretty suspect of his proactiveness in preventing m/cs if he flatly refused with your issues), we can tell you the formula most of us use, and you can build it from Folic Acid, Vitamin B6 and Vitamin B12 bottles over the counter.

Oh, I would ask him about baby aspirin as well (1 81mg pill per day). It's a slight blood thinner and helps get blood flowing better to the uterus. And in our cases, definitely helps as well with clotting issues.

[mvan]

Okay girls thank you so much for your responses. I just got a call back from the nurse. If it hadn't been for your responses, then I prob. would not have called. Anyway--I was supposed to have been taking Folgard for 2 weeks now!!! Can you believe that! I had called the nurse and left a message about it then and asked if I was supposed to start taking it. I wanted to save her a call, so I said that she didn't have to call me back if I wasn't supposed to start it. Well, she never called me back. I'm done being nice! I just need to make them work for their money--even if it means I'm being a nuisance. I used to think they were so organized, but they have a huge staff so their wires get crossed sometimes. I also think that they don't put much stock in FET's, so maybe we get put on the back burner--just my opinion.

Anyway I feel much better now that I know I'm supposed to be on Folgard. Thank you so much again for your responses--'cause me not wanting to "bother" them prob. would have kept me from calling. You girls are great!

By the way, I do take baby aspirin too.

LeslieT--I think that is so interesting that you have elevated homocysteine levels but not MTHFR. How did your dr. know to check your homocystiene levels?

Good luck you all and thank you so much for your helpful advice!

Michelle

[LeslieT]

I know...weird, huh? But they ran the MTHFR test 2-3 times and each time it was negative. They ran the homocysteine test in a battery of other clotting/immune tests to try to find all the possibilities of why I was miscarrying. I came up slightly elevated on the homocysteine one, and slightly elevated on the Lupus Anticoagulant one about 2 times out of 4. They had me on heparin early on in this pregnancy because of the 2 slightly positive LA tests, but then I had 2 episodes of bleeding and subchorionic hemhorrages at 7 weeks and 10 weeks that they think may have been caused by the heparin...they think my body wasn't positive enough on the LA tests to be able to handle the heparin (even at a low dose...5K units per day). I remember going for my nuchal scan at 12 weeks with my peri while I was still on the heparin, and when they did the finger prick the blood was literally dripping out of the small dot onto the floor...REALLY thin! My peri decided at that appointment to take me off the heparin since they couldn't find any other cause for the SCHs and strongly suspected the heparin was the cause, and had me me continue the baby aspirin. Thank goodness no complications ever since, but I was worried for awhile about stopping it.

BIG NOTE: If you've come back positive for elevated homocysteine, you need to have your parents get tested for elevated levels as well!! And if one of them comes back positive, then that parent's parents and siblings (your grandparents and any aunts/uncles on that side). You more likely than not inherited the condition, so one or both of your parents is likely positive too. It's a lifelong issue that can increase your likelihood of stroke, heart attack, thrombophilia and other clotting-related events unless you take the folic acid/vitB6/vitB12 supplement every day to help break the homocysteine build-up down. And if you inherited the condition from a parent, and if they inherited it from a parent and that parent and any of their siblings have it too, they would be at the exact danger age of stroke, heart attack, etc. They would need to find out if they have elevated homocysteine and, if so, get on the daily supplement NOW!

My mom and dad had blood drawn for the homocysteine test after I alerted them of my results...my peri urged me to talk to them and have them get tested too. My mom is still waiting for her results. But my dad came back slightly elevated just like me. He's in his mid-60s and his doctor immediately put him on the supplement and urged him to get on them ASAP. Filling the prescription that afternoon if at all possible. So especially at our parents' and grandparents' age, this is not something to treat lightly.

SO glad to hear you're now on the Folgard, and please keep us posted!

[mvan]

LeslieT,

That's a good idea about informing my family. Since I do have homzygous (2 + genes) MTHFR, then I definately did inherit that. I do plan to inform my mom and 2 brothers of the MTHFR and encourage them to get tested for the genes and if not-then at least to get their homocystiene tested every so often. My dad passed away in 1999, but he still has a living sister and mom, so I may inform them as well. It doesn't hurt right?

That is interesting about the subchorionic bleed possibly being caused by heparin. I also had a subchorionic bleed with my second + IVF when I was on heparin for a borderline APA. I then stopped it at around 12 weeks or so and the subchorionic bleed began to clear up. I never did have any bleeding or spotting-- everyone was surprised.

Well, good luck with the rest of your pregnancy--not much longer! And thanks for your input.

Michelle