MTHFR Hetero A1298C Questions that involve life OUTSIDE pregnancy

FireflyAlly · 05-19-2009, 06:39 PM

Hi guys! Newbie here, so please bear with me...

I was diagnosed 2 years ago with heterozygous MTHFR A1298C. Apparently this is the least significant gene combination. Problem is, I can't get a straight answer from ANYONE--the doctors, even my high risk OB/GYN (the best I could find in the tri-state area, since I want to keep him through my childless and childbearing years with this condition), are more familiar with the riskier combinations, and everyone else (like any good backseat-driver/moonlighting-"doctor") likes to go for the most extreme answers. All I'm finding online are answers for MTHFR in regard to pregnancy. But I'm 24, unmarried, just finished grad school--I have my whole life ahead of me. I don't want a baby now! The information is useless to me (at least till I have a rock on my finger and a house and some traveling under my belt lol) Needless to say, I'm getting frustrated.

Can ANYONE (please dear God please) answer even ONE of these NON-PREGNANCY questions for me? You would be my favorite person in the entire world. No joke.

1) I have been told I cannot go on birth control pills/any hormone contraceptive. Is this true? Or is this only a significant concern with the higher risk MTHFR combos? I'm trying to figure out what my most effective options with this disorder are...
2) If birth control is out, I suppose my distant-future hormone replacement therapy for my menopausal hot flashes will be out of the question too, huh?
3) Speaking of which, if both of those are out, I'm guessing Plan B emergency contraceptive is out too, due to the hormones? (So my options to avoid pregnancy, both now and when I'm married, is abstinence and pull-and-pray? Geez, Ultra Rightwingers should pick me as their sex-ed posterchild...)
4) Is it really a requirement that I go on bloodthinners "the VERY moment" i get a positive pregnancy test? Is there a bloodthinner that does not involve treating your bum like a pincushion twice a day for 9 months? (I hate needles.)

[WARNING: the following is probably really stupid, but were concerns placed in my head by a few laypeople I suspect are blowing this way out of proportion and/or maybe trying to kill me with stress or give me a stroke. I haven't decided which one yet...)
5) Ok, so now I have this diagnosis, and I'm not allowed to sit still on a plane for more than an hour? I'm sure the federal air marshals will love the passenger wandering up and down the aisle every 60 minutes while on her honeymoon flight lol There goes my dream of seeing Japan...
6) Apparently, hot tubs are out of the question for me too? And hot baths? And even hot showers? This is upsetting, because I love hot tubs! And it gets cold in NYC--cold showers are NOT going to cut it.
7) No more drinking for me, because it relaxes the veins and muscles? No champagne toasts at my kids' graduations? No wedding at the vineyards? No Fourth of July beer-and-bbq?

What a happy future I have...
8) I'm never allowed to get a massage again, because it'll "loosen clots"? I'm an accountant--do you know what tax season does to my shoulders? You could break bricks on them. I need spa treatments!
9) Absolutely no smoking? (Ok, not such an issue for a strict non-smoker, but I want to clear it up with REAL facts)
10) I must never again sit cross legged, because it will stop the circulation? Look, I can live with spider veins. The clots are another story--I wouldn't live with those. I will change the way I sit if this is true.
11) Migraine medications are really out of the question?

I appreciate any information anyone can give. Thank you so much for your help, and for even reading through all this.

~Ally

faithful96 · 05-20-2009, 09:31 AM

Hello Ally,

I also live in the tri-state area, I live 20 minutes outside of NYC in New Jersey. I had the genetic panel completed not because I am trying to conceive, but because there is a family history of these types of mutations.

I have a heterozygous C677T MTHFR and a few additional clotting factors. I have 2 local hematologists (first and second opinion type concept). When I specifically asked "what precautions should I take" - the answer was always "prepare yourself in situations with an increased risk of clotting: mainly birth control pills, pregnancy and flying." My combination of genetic factors is compounded more than yours and there was no mention of massages or hot tubs. I am seeing the 2nd opinion hematologist tomorrow, and I will ask him.

With regards to your questions, where did you get those answers? Did they come specifically from your doctor(s)? Have you ever had a clotting event?

My first hematologist was familar with every verison of MTHFR and we even discussed the differences and compared how mine differs from the others.

Blood Thinners During Pregnancy - With MTHFR, I am sure you know, the risk of miscarriage or throwing a clot is significantly higher. You could of course accept those risks and say no to the blood thinners via needle, however can you have a viable pregnancy? Who knows. Some women do. Many don't. Incidentally, the shots are done in the stomach area (not the bum) -- although I am not sure which is worse. Furthermore, many doctors prescribe the needles prior to a positive pregnancy test, some start you on them the day you begin trying to conceive. There are also risks with the blood thinning meds.

Flying on a Plane - I not only have to move around, I also have to inject myself with blood thinners prior to each flight. I am guessing your single MTHFR factor didn't warrant this extreme by your doctor? My parents and uncles have been taking strolls on flights for years and have never been questioned by the flight staff or federal air marshalls. What kills me is that I used to sleep straight through every flight, and now I can't.

No Drinking Alcohol - I have been told alcohol in moderation is fine.

Hot Tubs, Massages, Sitting Cross Legged - All news to me. Has anyone heard of these?

You do have to live your life, and my guess is that you've hot tubbed (is that even a verb?) drank alcohol, flown on planes, perhaps had a massage and surely sat cross-legged. Some are just higher risk than others and we just have to be smart about it.

-KTB

poohbear · 05-20-2009, 12:07 PM

I am hetero for the C677T mutation and honestly the hematologist did not think I needed lovenox because of that specific mutation. I've pg. 2x with no problems during or after delivery before I even knew I had this mutation. I am also hetero for PAI-1 so call it luck but I escaped pg. unscathed. I now have anti-cardiolipin ab and therefore I've been on baby aspirin and lovenox while ttc as that is more of a risk for clotting problems. With hetero most doctors don't even blink because 30% of the population has one of the thrombophilias and most don't even know it. I would say ask about he baby aspirin and also extra folate. The big issue is if homeocystine levels get too high because your body isn't able to get rid of it with the mutation you are at greater risk for cardiovascular disase. Not everyone with this mutation has high homecystine levels. Extra folate, B12 usually handles this. There are prescription vitamins like Folvee for example you can take too. I was also on bcp for 10 years of my life on and off before I knew of this and I had no clot. I get migraines too around AF and I've heard some link with this mutation but no one has ever confirmed this. I was told now though I should never take bcp and that's fine with me. Although this is something no one wants to get diagnosed with, there are many of us with the hetero form and are doing okay, have been pg. or are ttc. Sitting crossed legged in general is not good for anyone especially pg. women as it can disrupt circulation! I never heard anything about hot tubs, massages. Massages are contraindicated with people who have existing clots or DVT. I have used massage before. I hope this helps a bit and puts you at ease. HUGS
Stacey

faithful96 · 05-20-2009, 03:59 PM

Stacey brings up a good point. She had no issue with getting PG and carrying full term, so really everyone is different. The MTHFR threads here demonstrate some women have no issues, others do. It's a very specific thing.

poohbear · 05-20-2009, 07:29 PM

Faithful,
I guess you just don't know. I do think though when the body is younger it is easier to overcome these issues. Being I'm in my 40's now and have had 2 losses in the past 2 years you just don't know. The doctors don't have all the answers and things can vary from person to person.

kenj711 · 06-03-2009, 12:43 PM

Ally,

Hi. My youngest daughter (1 yo) is heterozygous for the A1298C mutation as well. The statement that came with the results states: "the presence of one copy of the A1298C mutation has not been associated with an increased risk for hyperhomocysteinemia or vascular disease."

The only reason my children were tested for this is that my wife has one of the mutations. Her first pregnancy was lost due to severe NTD. She has had two subsequent pregnancies with no complications or abnormalities. Also, she has been on BCP for 13 years, except when trying to conceive, with no problems.

Neither my wife's or daughter's doctors have ever advised against any particular activities or recommended anything other than the standard precautions for any woman on BCP. The only recommendation for my wife is an increased folic acid intake.

05-19-2009, 06:39 PM	#1 (permalink)
FireflyAlly 0-99 post 2 of hearts Join Date: May 2009 Location: NYC Posts: 1	MTHFR Hetero A1298C Questions that involve life OUTSIDE pregnancy Hi guys! Newbie here, so please bear with me... I was diagnosed 2 years ago with heterozygous MTHFR A1298C. Apparently this is the least significant gene combination. Problem is, I can't get a straight answer from ANYONE--the doctors, even my high risk OB/GYN (the best I could find in the tri-state area, since I want to keep him through my childless and childbearing years with this condition), are more familiar with the riskier combinations, and everyone else (like any good backseat-driver/moonlighting-"doctor") likes to go for the most extreme answers. All I'm finding online are answers for MTHFR in regard to pregnancy. But I'm 24, unmarried, just finished grad school--I have my whole life ahead of me. I don't want a baby now! The information is useless to me (at least till I have a rock on my finger and a house and some traveling under my belt lol) Needless to say, I'm getting frustrated. Can ANYONE (please dear God please) answer even ONE of these NON-PREGNANCY questions for me? You would be my favorite person in the entire world. No joke. 1) I have been told I cannot go on birth control pills/any hormone contraceptive. Is this true? Or is this only a significant concern with the higher risk MTHFR combos? I'm trying to figure out what my most effective options with this disorder are... 2) If birth control is out, I suppose my distant-future hormone replacement therapy for my menopausal hot flashes will be out of the question too, huh? 3) Speaking of which, if both of those are out, I'm guessing Plan B emergency contraceptive is out too, due to the hormones? (So my options to avoid pregnancy, both now and when I'm married, is abstinence and pull-and-pray? Geez, Ultra Rightwingers should pick me as their sex-ed posterchild...) 4) Is it really a requirement that I go on bloodthinners "the VERY moment" i get a positive pregnancy test? Is there a bloodthinner that does not involve treating your bum like a pincushion twice a day for 9 months? (I hate needles.) [WARNING: the following is probably really stupid, but were concerns placed in my head by a few laypeople I suspect are blowing this way out of proportion and/or maybe trying to kill me with stress or give me a stroke. I haven't decided which one yet...) 5) Ok, so now I have this diagnosis, and I'm not allowed to sit still on a plane for more than an hour? I'm sure the federal air marshals will love the passenger wandering up and down the aisle every 60 minutes while on her honeymoon flight lol There goes my dream of seeing Japan... 6) Apparently, hot tubs are out of the question for me too? And hot baths? And even hot showers? This is upsetting, because I love hot tubs! And it gets cold in NYC--cold showers are NOT going to cut it. 7) No more drinking for me, because it relaxes the veins and muscles? No champagne toasts at my kids' graduations? No wedding at the vineyards? No Fourth of July beer-and-bbq? What a happy future I have... 8) I'm never allowed to get a massage again, because it'll "loosen clots"? I'm an accountant--do you know what tax season does to my shoulders? You could break bricks on them. I need spa treatments! 9) Absolutely no smoking? (Ok, not such an issue for a strict non-smoker, but I want to clear it up with REAL facts) 10) I must never again sit cross legged, because it will stop the circulation? Look, I can live with spider veins. The clots are another story--I wouldn't live with those. I will change the way I sit if this is true. 11) Migraine medications are really out of the question? I appreciate any information anyone can give. Thank you so much for your help, and for even reading through all this. ~Ally

05-20-2009, 09:31 AM	#2 (permalink)
faithful96 0-99 post 2 of hearts Join Date: May 2009 Posts: 14	Hello Ally, I also live in the tri-state area, I live 20 minutes outside of NYC in New Jersey. I had the genetic panel completed not because I am trying to conceive, but because there is a family history of these types of mutations. I have a heterozygous C677T MTHFR and a few additional clotting factors. I have 2 local hematologists (first and second opinion type concept). When I specifically asked "what precautions should I take" - the answer was always "prepare yourself in situations with an increased risk of clotting: mainly birth control pills, pregnancy and flying." My combination of genetic factors is compounded more than yours and there was no mention of massages or hot tubs. I am seeing the 2nd opinion hematologist tomorrow, and I will ask him. With regards to your questions, where did you get those answers? Did they come specifically from your doctor(s)? Have you ever had a clotting event? My first hematologist was familar with every verison of MTHFR and we even discussed the differences and compared how mine differs from the others. Blood Thinners During Pregnancy - With MTHFR, I am sure you know, the risk of miscarriage or throwing a clot is significantly higher. You could of course accept those risks and say no to the blood thinners via needle, however can you have a viable pregnancy? Who knows. Some women do. Many don't. Incidentally, the shots are done in the stomach area (not the bum) -- although I am not sure which is worse. Furthermore, many doctors prescribe the needles prior to a positive pregnancy test, some start you on them the day you begin trying to conceive. There are also risks with the blood thinning meds. Flying on a Plane - I not only have to move around, I also have to inject myself with blood thinners prior to each flight. I am guessing your single MTHFR factor didn't warrant this extreme by your doctor? My parents and uncles have been taking strolls on flights for years and have never been questioned by the flight staff or federal air marshalls. What kills me is that I used to sleep straight through every flight, and now I can't. No Drinking Alcohol - I have been told alcohol in moderation is fine. Hot Tubs, Massages, Sitting Cross Legged - All news to me. Has anyone heard of these? You do have to live your life, and my guess is that you've hot tubbed (is that even a verb?) drank alcohol, flown on planes, perhaps had a massage and surely sat cross-legged. Some are just higher risk than others and we just have to be smart about it. -KTB Last edited by faithful96; 05-20-2009 at 04:04 PM.

05-20-2009, 12:07 PM	#3 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	I am hetero for the C677T mutation and honestly the hematologist did not think I needed lovenox because of that specific mutation. I've pg. 2x with no problems during or after delivery before I even knew I had this mutation. I am also hetero for PAI-1 so call it luck but I escaped pg. unscathed. I now have anti-cardiolipin ab and therefore I've been on baby aspirin and lovenox while ttc as that is more of a risk for clotting problems. With hetero most doctors don't even blink because 30% of the population has one of the thrombophilias and most don't even know it. I would say ask about he baby aspirin and also extra folate. The big issue is if homeocystine levels get too high because your body isn't able to get rid of it with the mutation you are at greater risk for cardiovascular disase. Not everyone with this mutation has high homecystine levels. Extra folate, B12 usually handles this. There are prescription vitamins like Folvee for example you can take too. I was also on bcp for 10 years of my life on and off before I knew of this and I had no clot. I get migraines too around AF and I've heard some link with this mutation but no one has ever confirmed this. I was told now though I should never take bcp and that's fine with me. Although this is something no one wants to get diagnosed with, there are many of us with the hetero form and are doing okay, have been pg. or are ttc. Sitting crossed legged in general is not good for anyone especially pg. women as it can disrupt circulation! I never heard anything about hot tubs, massages. Massages are contraindicated with people who have existing clots or DVT. I have used massage before. I hope this helps a bit and puts you at ease. HUGS Stacey Last edited by poohbear; 05-20-2009 at 12:12 PM.

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05-20-2009, 03:59 PM	#4 (permalink)
faithful96 0-99 post 2 of hearts Join Date: May 2009 Posts: 14	Stacey brings up a good point. She had no issue with getting PG and carrying full term, so really everyone is different. The MTHFR threads here demonstrate some women have no issues, others do. It's a very specific thing.

05-20-2009, 07:29 PM	#5 (permalink)
poohbear 5000-9999 post king of hearts Join Date: Jan 2002 Location: NYS Posts: 6,330	Faithful, I guess you just don't know. I do think though when the body is younger it is easier to overcome these issues. Being I'm in my 40's now and have had 2 losses in the past 2 years you just don't know. The doctors don't have all the answers and things can vary from person to person.

06-03-2009, 12:43 PM	#6 (permalink)
kenj711 0-99 post 2 of hearts Join Date: Jun 2009 Posts: 1	Ally, Hi. My youngest daughter (1 yo) is heterozygous for the A1298C mutation as well. The statement that came with the results states: "the presence of one copy of the A1298C mutation has not been associated with an increased risk for hyperhomocysteinemia or vascular disease." The only reason my children were tested for this is that my wife has one of the mutations. Her first pregnancy was lost due to severe NTD. She has had two subsequent pregnancies with no complications or abnormalities. Also, she has been on BCP for 13 years, except when trying to conceive, with no problems. Neither my wife's or daughter's doctors have ever advised against any particular activities or recommended anything other than the standard precautions for any woman on BCP. The only recommendation for my wife is an increased folic acid intake.