MTHFR.... Lots of questions

purpleflower · January 2013

Hi ladies,

I am back I haven't been around here for a while. I Just had my 2nd m/c and am newly diagnosed with MTHFR. I was put on Foltx and asprin (81mg). My OB says as soon as we see a heartbeat (we are again TTC) then I would be placed on lovenox injections as well.

As I have done research on this I am a little worried I am not on the right supplements and should be on L-methylfolate (I believe) So this all has me wondering What is everyone taking? Have you seen your symptons get better? And what sites have you used in your research?

I want to have another baby but at the same time the reading I have done leads me to believe that my health could improve with good and right treatment as well. So I want to be sure I am on the right treatment...Thanks!

(also I tried to change my signature and it looks right in my edit box but isn't showing up like that, sorry for the siggy!

Coug4 · January 2013

I'm on L-methylfolate (Deplin) and baby aspirin. My doctor recommended that with a regular prenatal. Haven't really noticed a change in symptoms, never really had any to be honest. As for research, there isn't a lot out there. I was told five years ago, they didn't even know this existed, so data is limited. Good luck to you!

km_md · January 2013

I'm sorry for your losses. TB seems to be having siggy issues, hopefully that goes away for you soon. I'd put a warning in your thread title though, even though you don't mean for the ticker to be there. There are lots of ladies around who have MTHFR experience so you should get some great advice. I actually have a question for you though. When you say symptoms, do you mean symptoms from MTHFR? If so, what kinds of symptoms are you having, if you don't mind my asking? I'm in the process of getting tested for this, and I'm curious about whether those with diagnosed MTHFR mutations have symptoms. Again, I'm sorry for your losses, but glad you found us, this is a great community.

RunningGal900 · January 2013

I have both MTHFR (homozygous C677T, which is the most severe form) and PAI-1 and neither my OB, nor my RE, nor my hematologist want to put me on blood thinners during any future pregnancies. Both the RE and the hematologists said there are risks associated with blood thinners and there is no data supporting anticoagulants for those mutations. I asked about taking the pre-metabolized form and all three Drs said that if I wanted to, I could, but that the research is all based on folic acid and they believe any form of folic acid is fine. To be honest, both the RE and hematologist, said that MTHFR isn't something that worries them with pregnancy. My OB prescribed baby aspirin which the other two drs said I could keep taking, but again, said there is no research supporting it.

Also, as a bit of hope. I had a perfectly normal pregnancy 2 years ago with my son with no additional treatment (in fact, I was only taking 400 mcg of folic acid at the time).

Were your homocysteine levels tested? The will be regularly checking my homocysteine levels during future pregnancies.

As far as symptoms, I have had none other than recurrent miscarriage. It's a fairly common mutation that most people never find out they have.

I personally found that the information on the internet can be pretty scary. It makes it sound like you will have a stroke or heart attack or some other horrible thing from this mutation. Talking to the RE and hematologist helped put my mind at ease.

km_md · January 2013

RunningGal900:
I have both MTHFR (homozygous C677T, which is the most severe form) and PAI-1 and neither my OB, nor my RE, nor my hematologist want to put me on blood thinners during any future pregnancies. Both the RE and the hematologists said there are risks associated with blood thinners and there is no data supporting anticoagulants for those mutations. I asked about taking the pre-metabolized form and all three Drs said that if I wanted to, I could, but that the research is all based on folic acid and they believe any form of folic acid is fine. To be honest, both the RE and hematologist, said that MTHFR isn't something that worries them with pregnancy. My OB prescribed baby aspirin which the other two drs said I could keep taking, but again, said there is no research supporting it.
Also, as a bit of hope. I had a perfectly normal pregnancy 2 years ago with my son with no additional treatment (in fact, I was only taking 400 mcg of folic acid at the time).
Were your homocysteine levels tested? The will be regularly checking my homocysteine levels during future pregnancies.
As far as symptoms, I have had none other than recurrent miscarriage. It's a fairly common mutation that most people never find out they have.
I personally found that the information on the internet can be pretty scary. It makes it sound like you will have a stroke or heart attack or some other horrible thing from this mutation. Talking to the RE and hematologist helped put my mind at ease.

Interesting? I've also found that the research is so divided on this. The reason I asked about symptoms is because I've read multiple times that it is implicated in B12 deficiency, depression/anxiety, and fibromyalgia, among other things. I have all of these symptoms and they are all unexplained.

egsquared · January 2013

km_md:
RunningGal900:

I have both MTHFR (homozygous C677T, which is the most severe form) and PAI-1 and neither my OB, nor my RE, nor my hematologist want to put me on blood thinners during any future pregnancies. Both the RE and the hematologists said there are risks associated with blood thinners and there is no data supporting anticoagulants for those mutations. I asked about taking the pre-metabolized form and all three Drs said that if I wanted to, I could, but that the research is all based on folic acid and they believe any form of folic acid is fine. To be honest, both the RE and hematologist, said that MTHFR isn't something that worries them with pregnancy. My OB prescribed baby aspirin which the other two drs said I could keep taking, but again, said there is no research supporting it.

Also, as a bit of hope. I had a perfectly normal pregnancy 2 years ago with my son with no additional treatment (in fact, I was only taking 400 mcg of folic acid at the time).

Were your homocysteine levels tested? The will be regularly checking my homocysteine levels during future pregnancies.

As far as symptoms, I have had none other than recurrent miscarriage. It's a fairly common mutation that most people never find out they have.

I personally found that the information on the internet can be pretty scary. It makes it sound like you will have a stroke or heart attack or some other horrible thing from this mutation. Talking to the RE and hematologist helped put my mind at ease.

Interesting? I've also found that the research is so divided on this. The reason I asked about symptoms is because I've read multiple times that it is implicated in B12 deficiency, depression/anxiety, and fibromyalgia, among other things. I have all of these symptoms and they are all unexplained.

Very interesting. I have very similar unexplained symptoms, and was recently diagnosed with MTHFR. I haven't seen any of the research on MTHFR symptoms, but am off to google now!

OP, my RE initially said I didn't have to anything for the MTHFR because it was a common mutation in the general population. I then asked about baby aspirin and lovenox, and was told they couldn't hurt. So, now I'm taking baby aspirin daily and will start lovenox at egg transfer (doing IVF). I was already taking prescription folic acid, but neither RE that I've seen said anything about taking a specific form of it?

katharine25 · January 2013

** siggy warning, pg mentioned **

I hope you don't mind me commenting. I do want to stress the importance of knowing your homocyteine levels, which some RE's may or may not find relevant. They are. This is from the TTCAL blog, and is honestly one of the most straight forward articles there is on the web (and I've read a LOT of articles). https://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/

I am homozygous MTHFR on the A gene and have high homocyteine levels, as well as some other acgquired thrombolphilias.. My RE put me on Baby Aspirin & Metanx which is L-methyolfolate, with the plan the when I got a BFP I would then go on Lovenox, due more to the other thromobophilias. After 3 months of being on BA & Metanx, my Folic acid & B levels were still low (so Metanz isn't really working all that well) and my homocyteine levels still high - but I only know this because I asked my PCP to run them for me at my annual - in fact they are higher then last year after my first loss. In Oct/Nov I also had a chemical pg while only on Metanx and BA aspirin therapy - That may or may not be unrelated to MTFHR but the two alone weren't working for me. The next cycle I started Lovenox at 3dpo and got a BFP. I'm only 7w so by no means a success yet, but I'm hopeful we're treating what has kept me from staying pg the past 4 times.

Some women go on to have very successful pg's with only BA & extra folic acid. Some don't. Some dr.'s think MTHFR is a cause of loss, others don't. I really think what the important link between these discrepencies is homocyteine levels. If they are normal, then MTHFR probably isn't playing any factor in your losses. If they high, then you are at a high risk for clotting and should really be on a blood thinner protocol early on. If you don't feel your doctor is being aggressive enough, find another one. (If your ins. doesn't cover RE's, one way also to skirt the "insurance factor" is to find a hemotologist that believes in these treatments). There is SOOO much diversity in medical opinion about this, and it is so frustrating. Ultimately what is most important is for you to feel like you are in good medical hands, being listened to, and have a doctor who will make you feel like you are doing everything possible to make it work.

Finally, this is a clicky link to a thread I started a few months ago on PgAL when I was looking for some hope. There are stories from all kinds of multiple loss women who are either on the way to, or are holding their rainbow. Many of them state that they have MTHFR, so if you are looking for some hopeful stories, and what to see what THEY did to get there, it's worth wading through the tickers and siggies. You'll see that some did exactly what your doctor is prescribing, and others needed more. Ultimately, what everyone will tell you is you need to be your own advocate.

km_md · January 2013

katharine25:
** siggy warning, pg mentioned **
I hope you don't mind me commenting. I do want to stress the importance of knowing your homocyteine levels, which some RE's may or may not find relevant. They are. This is from the TTCAL blog, and is honestly one of the most straight forward articles there is on the web (and I've read a LOT of articles). https://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/
I am homozygous MTHFR on the A gene and have high homocyteine levels, as well as some other acgquired thrombolphilias.. My RE put me on Baby Aspirin & Metanx which is L-methyolfolate, with the plan the when I got a BFP I would then go on Lovenox, due more to the other thromobophilias. After 3 months of being on BA & Metanx, my Folic acid & B levels were still low (so Metanz isn't really working all that well) and my homocyteine levels still high - but I only know this because I asked my PCP to run them for me at my annual - in fact they are higher then last year after my first loss. In Oct/Nov I also had a chemical pg while only on Metanx and BA aspirin therapy - That may or may not be unrelated to MTFHR but the two alone weren't working for me. The next cycle I started Lovenox at 3dpo and got a BFP. I'm only 7w so by no means a success yet, but I'm hopeful we're treating what has kept me from staying pg the past 4 times.
Some women go on to have very successful pg's with only BA & extra folic acid. Some don't. Some dr.'s think MTHFR is a cause of loss, others don't. I really think what the important link between these discrepencies is homocyteine levels. If they are normal, then MTHFR probably isn't playing any factor in your losses. If they high, then you are at a high risk for clotting and should really be on a blood thinner protocol early on. If you don't feel your doctor is being aggressive enough, find another one. (If your ins. doesn't cover RE's, one way also to skirt the "insurance factor" is to find a hemotologist that believes in these treatments). There is SOOO much diversity in medical opinion about this, and it is so frustrating. Ultimately what is most important is for you to feel like you are in good medical hands, being listened to, and have a doctor who will make you feel like you are doing everything possible to make it work.
Finally, this is a clicky link to a thread I started a few months ago on PgAL when I was looking for some hope. There are stories from all kinds of multiple loss women who are either on the way to, or are holding their rainbow. Many of them state that they have MTHFR, so if you are looking for some hopeful stories, and what to see what THEY did to get there, it's worth wading through the tickers and siggies. You'll see that some did exactly what your doctor is prescribing, and others needed more. Ultimately, what everyone will tell you is you need to be your own advocate.

I miss you and all of your wiseness lol (although I don't want you to come back here) Thanks for sharing this information.

purpleflower · January 2013

In all my research I found that there many symptoms and diseases associated with MTHFR. It has really explained all the symptoms I have had all my life that other dr have just told is nothing. Mine are I am tired all the time (although have never been diagnosed with cronic fatigue syndrome), I have a pain in my abdomen that I have had multiple tests on with no answers, constant nausea that is not related to pregnancy, recently I have developed joint aches, I also am get sick easily and frequently (with colds and minor illness). I found for the looking I have done that some people on the right doses and treatments see an improvement with all these symptoms. I don't know which type I am. My OBs office called me on friday with the news, so now on monday I plan to call and ask if I can have a sit down meeting with her and find out more about what tests were done, future monitoring and medications.

RunningGal900 · January 2013

katharine25:
** siggy warning, pg mentioned **
I hope you don't mind me commenting. I do want to stress the importance of knowing your homocyteine levels, which some RE's may or may not find relevant. They are. This is from the TTCAL blog, and is honestly one of the most straight forward articles there is on the web (and I've read a LOT of articles). https://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/
I am homozygous MTHFR on the A gene and have high homocyteine levels, as well as some other acgquired thrombolphilias.. My RE put me on Baby Aspirin & Metanx which is L-methyolfolate, with the plan the when I got a BFP I would then go on Lovenox, due more to the other thromobophilias. After 3 months of being on BA & Metanx, my Folic acid & B levels were still low (so Metanz isn't really working all that well) and my homocyteine levels still high - but I only know this because I asked my PCP to run them for me at my annual - in fact they are higher then last year after my first loss. In Oct/Nov I also had a chemical pg while only on Metanx and BA aspirin therapy - That may or may not be unrelated to MTFHR but the two alone weren't working for me. The next cycle I started Lovenox at 3dpo and got a BFP. I'm only 7w so by no means a success yet, but I'm hopeful we're treating what has kept me from staying pg the past 4 times.
Some women go on to have very successful pg's with only BA & extra folic acid. Some don't. Some dr.'s think MTHFR is a cause of loss, others don't. I really think what the important link between these discrepencies is homocyteine levels. If they are normal, then MTHFR probably isn't playing any factor in your losses. If they high, then you are at a high risk for clotting and should really be on a blood thinner protocol early on. If you don't feel your doctor is being aggressive enough, find another one. (If your ins. doesn't cover RE's, one way also to skirt the "insurance factor" is to find a hemotologist that believes in these treatments). There is SOOO much diversity in medical opinion about this, and it is so frustrating. Ultimately what is most important is for you to feel like you are in good medical hands, being listened to, and have a doctor who will make you feel like you are doing everything possible to make it work.
Finally, this is a clicky link to a thread I started a few months ago on PgAL when I was looking for some hope. There are stories from all kinds of multiple loss women who are either on the way to, or are holding their rainbow. Many of them state that they have MTHFR, so if you are looking for some hopeful stories, and what to see what THEY did to get there, it's worth wading through the tickers and siggies. You'll see that some did exactly what your doctor is prescribing, and others needed more. Ultimately, what everyone will tell you is you need to be your own advocate.

Katharine gave you lots of great info. And I agree with her that knowing your homocysteine levels is really important. That was the first thing the RE and hematologist wanted to know (the tests were run by my OB), and when they found out they were normal they were not concerned. I assume, though can't say for sure, that if I had high homocysteine levels it would have concerned them further.

katharine25 · January 2013

purpleflower:
In all my research I found that there many symptoms and diseases associated with MTHFR. It has really explained all the symptoms I have had all my life that other dr have just told is nothing. Mine are I am tired all the time (although have never been diagnosed with cronic fatigue syndrome), I have a pain in my abdomen that I have had multiple tests on with no answers, constant nausea that is not related to pregnancy, recently I have developed joint aches, I also am get sick easily and frequently (with colds and minor illness). I found for the looking I have done that some people on the right doses and treatments see an improvement with all these symptoms. I don't know which type I am. My OBs office called me on friday with the news, so now on monday I plan to call and ask if I can have a sit down meeting with her and find out more about what tests were done, future monitoring and medications.

It's possible you're experiencing symptoms from low vitamin B levels, especially the fatigue, but I've honestly never experienced any of what your claiming, and I have known low B levels. We're not the same person though, so that really doesn't mean anything. If you're going to get an RX for a folic acid, then it really doesn't hurt to ask for Metanx opposed to the Foltx or Folgard or whatever it is that s/he's RX'ing you - a lot of dr.'s just don't know about it.

purpleflower · January 2013

Thank you all so much! I was just getting so confused with everything out there and it is good to know I am not alone in all this!

km_md · January 2013

katharine25:
purpleflower:
In all my research I found that there many symptoms and diseases associated with MTHFR. It has really explained all the symptoms I have had all my life that other dr have just told is nothing. Mine are I am tired all the time (although have never been diagnosed with cronic fatigue syndrome), I have a pain in my abdomen that I have had multiple tests on with no answers, constant nausea that is not related to pregnancy, recently I have developed joint aches, I also am get sick easily and frequently (with colds and minor illness). I found for the looking I have done that some people on the right doses and treatments see an improvement with all these symptoms. I don't know which type I am. My OBs office called me on friday with the news, so now on monday I plan to call and ask if I can have a sit down meeting with her and find out more about what tests were done, future monitoring and medications.
It's possible you're experiencing symptoms from low vitamin B levels, especially the fatigue, but I've honestly never experienced any of what your claiming, and I have known low B levels. We're not the same person though, so that really doesn't mean anything. If you're going to get an RX for a folic acid, then it really doesn't hurt to ask for Metanx opposed to the Foltx or Folgard or whatever it is that s/he's RX'ing you - a lot of dr.'s just don't know about it.

I just wanted to share my experience with low B12. I'm on shots for B12 because mine got so low. I have to take a shot every month because my body doesn't absorb it through diet. But the point to this post, is that I had tons of symptoms from B12 before I started shots. I was tired all of the time, sick a lot, had stomach issues. The shots have made a huge difference in those areas.

purpleflower · January 2013

I guess i should push to get my levels tested....It is good to hear there is someone out there who saw improvement! Those are a lot of the same symptoms I have always had!

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