Archive for the ‘MTHFR’ Category

I can’t 100% guarantee that these side effects correlate with each drug, but I’ve been trying to keep track of what changes as I change/add drugs, so I think it’s pretty accurate (for me.) I thought a little summary might be useful for others taking these things for the first time or trying to figure out why they feel a little off. I will say that everybody’s side effects seem to be pretty different, so I’ve learned to ignore feedback from others to some extent unless trying to figure out why something’s wrong. Trying not to anticipate the worst and all that.

(PIO, Prometrium taken vaginally 2x a day, random messy progesterone compound made by Kaiser)- This has been one of the worst drugs for me, and it is unfortunately one of the ones I’ve been on the longest (half of every month for close to 2 years.) Biggest draw back is it makes me EXHAUSTED. Like fall asleep on the couch at 7pm and sleep all night long exhausted, and go through the day like I’m in a fog. It also mimics a lot of PG symptoms (where do you think 1st trimester exhaustion comes from?), which is a total unfair mind fuck for an IF woman, so try not to be fooled by it. Sore boobs, the whole lot. Ignore it. Worst part? It’s like taking a depressant. I can’t make decisions well on it. I’m sad a lot (perhaps partially hormonal partially b/c of IF). That plus the lack of energy makes it the worst drug for me.

Follistim (SQ shot)-Definitely made me emotionally reactive. Mostly made my ovaries HUGE and painful. I hurt and didn’t do much while stimming with this.

Ganirelex (shot. SQ?)– Caused some hot flashes.

Clomid (pill CD5-9)- Didn’t notice much. Maybe made me a little emotionally reactive. Vaginal dryness. Not bad. No “Clomid crazies” here. Maybe a hot flash or two.

HcG (IM or SQ shot as trigger and booster)- I think this makes me have to pee more. I literally wet myself yesterday. I sometimes sneeze and trickle a little, but yesterday I really had to go and thought I’d put a pan on the stove to boil first. Turned on the water and turned on my water. Had to change my shorts and everything. Full on PEE. How embarrassing. This isn’t bad enough without peeing myself? I’ve also been getting up 2x a night to pee regularly, which is a lot for me. So it seems having to pee a lot during early PG is more hormonal than physical maybe.

Medrol/Prednisone (steroids/pills)- These seem to cause insomnia. I took pretty heavy doses of prednisone when PG with O and covered in welts because of PUPPS.
pupps leg
pupps feet
pupps belly

I couldn’t sleep (despite 2 ambien) then but thought it was just the rash and discomfort of PG. I’ve taken prednisone a couple times (at lower doses–20mg/ day instead of 60mg) since then and noticed the same insomnia. So now I’m on medrol before ET and am both completely exhausted b/c of the progesterone and have insomnia because of the steroids. ARGH! If you do have allergies, steroids can make them better, so at least this has been good timing for that.

Lupron Depot (1x a month IM shot to treat microscopic endo implants)- I was worried about this b/c I’ve heard NIGHTMARE stories. I felt great on Lupron Depot. I wasn’t taking progesterone, so I had energy for the 1st time in 2 years. I dropped 20 lbs easier than I ever have. I felt good emotionally. There was some vaginal dryness (sorry TMI) and my sex drive took a hit like when I was on BCP, but I could deal with those. Long term it can cause some bone density loss, but I tried to mitigate that (REs orders) with 1000 mg of Calcium daily + 1000 iu of Vitamin D.

Folguard and a baby aspirin a day for MTHFR (massive folic acid pill + other B vitamins)- Can’t pinpoint this one for sure, but I think it gives me more energy.

Estrogen (estradiol orally and vaginally, Climera estrogen patches, Del Estrogen IM injections, currently all together.) Um, estrogen RULES. Estrogen gives me an excess of CM. Let’s just say that does good things for the sex drive! Long term it can cause some health problems (stroke, blood clots, etc), but I’m on low doses and haven’t been on it for too long. LOVE IT.

So that’s my list, in order of most hated to most favorite!


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Tonight I got my first shot for the FET. (Lupron, for those of you who know what that means. For those of you who don’t, it’s supposed to keep me from ovulating on my own so they can control the hormone levels and avoid my body surprising them.)

When I opened the box to make sure I had everything I needed, I actually laughed. Look how cute and small! That’s a needle and syringe all in one little sealed container.

lupron shot

I laughed because the last fertility shot I had was one of these (that’s JUST the needle, for size comparison. These are the needles you use for Progesterone in Oil, which I’ll take again at the end of this cycle. Kind of hard to tell, but the needle is almost the size of the plastic bubble. It’s also one thick mofo. Like the thickness of the pencil lead that comes in a regular wooden pencil):

FETs are supposed to be less complicated, but this one isn’t turning out that way. I’ve been doing Lupron Depot shots since February. I had laparoscopic surgery in March. I started taking estrogen and progesterone in April. I’ve been taking estrogen and birth control pills since late April. That’s in addition to the 7 pills I take daily (prenatal vitamin, calcium to counteract the Lupron Depot, baby aspirin and 2 Folguards for the MTHFR, Fish Oil)

All those pills are why I’m the only person I know under 60 who has one of these:
pill container

When you get a box of drugs (well, 3 shipments, actually) like this, it’s hard to feel like you’re doing something “simpler,” though:
fet drugs

So tonight was the first SHOT (well, except the Lupron Depot), but I’ve been a druggie for a while. And I still have about a month until there are even any embroys put back in my belly!

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Compound hetero

When I got back the MTHFR results, I asked the nurse if this could be the reason we’re not getting/staying pregnant. She said probably not.

Poking around a bit, I wonder if I don’t need to ask more questions.

She told me if I had two copies of the same gene (homo) it would be worse and they’d put me on blood thinners. A journal article I just read said being compound hetero (1 copy of each gene–what I am) is as bad as being homo, and everything else puts it “almost as bad.” (There’s a joke in there somewhere. Something about being twice as straight, maybe? I have a friend who is “twice as gay,” according to Barbara Streisand. Maybe he’d know.)

I’m supposed to go in for a fasting insulin tolerance test on Monday, and I think I’ll see if they can test my fasting homocystine levels while I’m there (and already fasting). Elevated levels could indicate a need for blood thinners while pregnant, beyond the baby aspirin I’m already on.

I also have a family history of severe heart problems on my Mom’s side, and this could have indications for my cardiac health. Raised homocystine levels greatly increase your chance of heart attack or stroke.

I figure it doesn’t hurt to have too much information.

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For my sinuses, the ENT had me start probiotics (2Tbs of liquid 1x a day), and Grapefruit Seed Extract (8 drops that I put in my POM juice so I can stomach it. It tastes FOUL). Got a new prenatal (I’ve polished off about 4 huge bottles since TTC), still taking the fish oil I was on. Started taking 1 Baby Aspirin a day again, per the RE. Started Folguard for the MTHFR (2x a day). Taking mucinex again for CM. Taking Wheatgrass juice in the am, just because I figure it can’t hurt (anecdotal evidence says it helps with egg quality).

That’s like 7 things a day to remember, and it’s all probably for NOTHING. 8 once I O and start progesterone again (2 suppositories a day shoved up my ho-ha).

But I feel like I have to give it a shot, just in case my body decides to get spontaneously pregnant again.

I do feel pretty good, I guess. Better than when my stomach and butt were a bruised mess from injections! Somewhere around here I have a picture of that…

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Mother F—er!

Those of you in the know on infertility matters will know what this means because it’s a common nickname. For the rest of you, here’s an explanation. MTHFR (thus its nickname) is a genetic mutation that causes problems with the absorption of folic acid. Folic acid is the reason they have you take pre-natal vitamins (PNV) because it’s really crucial to prenatal development. The typical PNV has 800-1000 mg of Folic Acid. Folic acid deficiencies can cause birth defects like spina bifida.

There’s more information on MTHFR here.

MTHFR can lead to high levels of homocysteine, which can cause a host of problems like heart disease, blood clotting issues, strokes, depression, anxiety, etc…

Fortunately, there are varieties of the mutation and mine does not seem to be a severe mutation. I have one copy of the C6772 mutation and one of the A1298C mutation. If I had 2 copies of either of those, it would be worse. I would have to take blood thinners, etc. They do NOT think this is IT. This is not THE reason I’ve had IF problems. It can be part of the picture, though.

Also fortunately, the solution is simple. I just need more folic acid. Instead of 800mg, I’ll take a Rx dose of 4,200 mg, I suppose for the rest of my life.

Anyway, it’s comforting to have one more part of the puzzle.

My analytical mind wonders if the reason I got PG last month was that I was eating so much swiss chard out of the garden (which is one of the biggest sources of folic acid you can eat). Though it probably isn’t founded, it’s just something else to wonder about. It’s also comforting to have something else to DO. Something else to FIX.

In the end…

Being unexplained sucks. Mother Fucker.

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