Aa
Homocysteine levels
First off, I'd like to say thanks for putting a community like this together. I just was diagnosed with compound heterozygous MTHFR and have so many questions. My doc doesn't seem to know much about it and so I've done most of my research on the internet. These past few years I have struggled with trying to get pregnant, ovarian cysts, endometriosis, hair loss, weight loss, anxiety and 2 miscarriages, and I think this condition can explain a few of these for me finally. Today I had my homocysteine levels checked and I find out next week how they are. Two days ago I took a heavy dose of follic acid and I hope that doesn't skew the results. If my levels turn out "normal" should I still be on a prescribed vitamin like folgard as well as a LD aspirin? Is there anything else I should know before ttc again?
Thanks a bunch for your help :)
Sarah
Thanks a bunch for your help :)
Sarah
Wow, your knowledge and opinions have helped me so much! I can't thank you enough. Thank you for the time you've put in to answer my questions and you have given me a sense of empowerment over my health! I am going to take your advice and start on the vitamins,prepping my body for a few months before trying to conceive. One last question, does caffeine, as in one cup in the morning, have any affects on absorption of these vitamins?
Thanks a million!
Sarah :)))
Thanks a million!
Sarah :)))
Part two... For Sarah continued
I am a strong believer in this MTHFR being a real medical issue which can be complicated by medical professions not knowing much or having controversial opinions about its validity or the treatments. Just remember, many doctors might tell you that you don't require Lovenox, but as far as I am concerned any person with a MTHFR diagnosis should automatically be put on Lovenox and only after a detailed placental scan ultrasound to check and ensure there are no clots present can perhaps be taken off of Lovenox. Some doctors feel the same way, many don't. It's up to you to make sure you voice your opinion regarding the situation, bring documentation and stay strong when it comes to your body, your wants and pregnancy. No one has the right to tell you it isn't possible for you to conceive just because you have MTHFR complications. I don't believe any physician has the right to have opinions that are negative to MTHFR and the treatments unless they themselves have studied haematology and genetics. To me it's pretty narrow sighted to say it's all unproven or doesn't exist or work if they don't know anything about it or have seen the benefits and results of those who have MTHFR and went through a proper treatment protocol with success.
Please don't be sorry for asking all the questions! I wish I could have a licence to back it all up but I am just a patient myself! My doctor often teases me and tells me I could get a licence with all the knowledge I have! But again, I do stress - I am NOT a doctor, just a schooled and researched individual who has gone through the same situation as you have. If you have more questions, please let me know! I am only a click away!
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
I am a strong believer in this MTHFR being a real medical issue which can be complicated by medical professions not knowing much or having controversial opinions about its validity or the treatments. Just remember, many doctors might tell you that you don't require Lovenox, but as far as I am concerned any person with a MTHFR diagnosis should automatically be put on Lovenox and only after a detailed placental scan ultrasound to check and ensure there are no clots present can perhaps be taken off of Lovenox. Some doctors feel the same way, many don't. It's up to you to make sure you voice your opinion regarding the situation, bring documentation and stay strong when it comes to your body, your wants and pregnancy. No one has the right to tell you it isn't possible for you to conceive just because you have MTHFR complications. I don't believe any physician has the right to have opinions that are negative to MTHFR and the treatments unless they themselves have studied haematology and genetics. To me it's pretty narrow sighted to say it's all unproven or doesn't exist or work if they don't know anything about it or have seen the benefits and results of those who have MTHFR and went through a proper treatment protocol with success.
Please don't be sorry for asking all the questions! I wish I could have a licence to back it all up but I am just a patient myself! My doctor often teases me and tells me I could get a licence with all the knowledge I have! But again, I do stress - I am NOT a doctor, just a schooled and researched individual who has gone through the same situation as you have. If you have more questions, please let me know! I am only a click away!
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
Hi Sarah, (Sorry this is long, it's going to be posted in two parts)
It's really up to you about how you want to proceed. But if it were me (and remember this is only my opinion) if you have no other genetic or health issues which would flag doctors on telling you that you shouldn't try and conceive, I don't see why you couldn't. I started taking the LD baby Aspirin before even consulting with my doctor, but I did make sure to ask him whether it was alright to continue it. I have a lot of medical research conducted when I go ahead and do these things, so I trust myself and my doctor also trusts me as he has actually admitted that he has learned so much from me with all my research in the MTHFR area. With respect to your question about the blood thinners (such as Lovenox) it would depend on what variants you have and also if you have had a history of any clotting issues in your past. Not that clotting would determine all together if you should or shouldn't take the Lovenox but definitely if you have had ANY clotting issues whatsoever, you would want to start Lovenox right away. I am guessing you have the same variants as I do, One C677T and one A1298C. Those tend to be the most common Compound MTHFR variants. Having C677T is the one that is known to be most responsible for clotting issues but if you have the Factor V Leiden, or Thrombophilia on top of the Compound MTHFR diagnosis, it would likely warrant the Lovenox.
Think of it this way, I was having so much trouble with miscarriages before this pregnancy and also two of the three losses were implantation failures which are likely attributable to the MTHFR according to my OB and my own research. It was for this reason I was referred to a MTHFR specialist to see if I should actually start Lovenox before conceiving in order to help me achieve a proper implantation that wouldn't fail. It turned out that I actually conceived before my appointment and I was then in a panic to get the Lovenox started before I lost another pregnancy. I literally was in tears begging my family doctor to prescribe me the Lovenox despite not having seen the specialist (it was 8 weeks away to that date) and I had all the research ready to back up my request. Thankfully my doctor allowed me to get the prescription but at the time I had only one diagnosis of heterozygous C677T and I was madly trying to get my health care system to test me for the A1298C which had not been tested in my Province for over 5 years. I knew by my reserach that if indeed I had the other variant that it would change the treatment I had proposed to my doctor since initially for my request of Lovenox (40mgs once a day), I only was going on one variant alone. After learning I was compound my treatment of Lovenox changed to 30mgs twice a day.
Now as far as what you can take if you can't get a prescription, my research indicated 100 B Complex Vitamin (I take the Jamieson brand) but any brand will do, just try to get the highest dose available. I think they have at 25, 50, 75 and 100 mgs. I bought a regular Folic Acid (same brand) which comes in 1mg doses and I took 4mgs per day. And the baby aspirin is a low dose which is 81 mgs. Once you start this regimen you continue it unless your doctors tell you not to take it. It is even more important in your pregnancy to continue these (they are not just for conception) because without these specific items you can have pregnancy problems from either lack of Folic Acid (which MTHFR inhibits) which can cause neural tube defects and other issues since Folic Acid is the building block for cells, the Vitamin B for the same reasons (MTHFR) and the aspirin to help avoid any potential clotting issues. The baby aspirin is a small substitute for a blood thinner which is what LD baby aspirin is indicated for in anyone who has heart, vascular issues or clotting. In most cases any person who has MTHFR should be taking a LD baby aspirin for the rest of their lives, not just for pregnancy. But again, all these things should be confirmed with a physician but these are the usual indicated drugs for a person with MTHFR who is pregnant or TTC. The Folic Acid is something that you will need to continue after pregnancy also along with the aspirin, since you have absorption issues caused by MTHFR. Folic Acid is not only designated for pregnancy, it is a part of foods which your body requires to absorb normally and when you have absorption issues caused by MTHFR, you lack normal amounts of Folic Acid all the time. The proper type of Folics that you should take are in prenatals though because the newer types of prenatal vitamins ensure that you don't cause absorption issues with other vitamins. The type of prenatal vitamin that I was prescribed actually comes in a stronger Folic Acid (5mgs instead of 0.4 mgs) and comes in two parts, an AM tablet and a PM tablet so that the Iron and Calcium do not inhibit each other. The brand of that prenatal is called PregVit - Folic 5. I am not sure if that is available in the US or just in Canada. I often read the popular one prescribed for people with MTHFR in the US is called Folgard.
Remember the best situation for your body is that you take these specific vitamins especially the Folic Acid for 3 months before conception. That is the recommended amount of time, but it isn't required. So long as you start now, you will be ahead of the game. Think of it as your holy grail. Many of us know that without these things, we probably would not have conceived let alone carried our pregnancies to term. I can say it has definitely made a difference in my life and I know it isn't co-incidental that I am now just about 18 weeks along. My first pregnancy (and now today 17 months old son) was diagnosed with Down syndrome (which if you read one of my posts here at near the bottom of this forum you will see the relationship to MTHFR), my next three pregnancies ended in losses, at 9w3days, then 4 weeks and 4 weeks. So I don't think it's at all co-incidental that this time around things are great (knock on wood) free of any chromosomal issues and sticking.
Cont in next comment post...
It's really up to you about how you want to proceed. But if it were me (and remember this is only my opinion) if you have no other genetic or health issues which would flag doctors on telling you that you shouldn't try and conceive, I don't see why you couldn't. I started taking the LD baby Aspirin before even consulting with my doctor, but I did make sure to ask him whether it was alright to continue it. I have a lot of medical research conducted when I go ahead and do these things, so I trust myself and my doctor also trusts me as he has actually admitted that he has learned so much from me with all my research in the MTHFR area. With respect to your question about the blood thinners (such as Lovenox) it would depend on what variants you have and also if you have had a history of any clotting issues in your past. Not that clotting would determine all together if you should or shouldn't take the Lovenox but definitely if you have had ANY clotting issues whatsoever, you would want to start Lovenox right away. I am guessing you have the same variants as I do, One C677T and one A1298C. Those tend to be the most common Compound MTHFR variants. Having C677T is the one that is known to be most responsible for clotting issues but if you have the Factor V Leiden, or Thrombophilia on top of the Compound MTHFR diagnosis, it would likely warrant the Lovenox.
Think of it this way, I was having so much trouble with miscarriages before this pregnancy and also two of the three losses were implantation failures which are likely attributable to the MTHFR according to my OB and my own research. It was for this reason I was referred to a MTHFR specialist to see if I should actually start Lovenox before conceiving in order to help me achieve a proper implantation that wouldn't fail. It turned out that I actually conceived before my appointment and I was then in a panic to get the Lovenox started before I lost another pregnancy. I literally was in tears begging my family doctor to prescribe me the Lovenox despite not having seen the specialist (it was 8 weeks away to that date) and I had all the research ready to back up my request. Thankfully my doctor allowed me to get the prescription but at the time I had only one diagnosis of heterozygous C677T and I was madly trying to get my health care system to test me for the A1298C which had not been tested in my Province for over 5 years. I knew by my reserach that if indeed I had the other variant that it would change the treatment I had proposed to my doctor since initially for my request of Lovenox (40mgs once a day), I only was going on one variant alone. After learning I was compound my treatment of Lovenox changed to 30mgs twice a day.
Now as far as what you can take if you can't get a prescription, my research indicated 100 B Complex Vitamin (I take the Jamieson brand) but any brand will do, just try to get the highest dose available. I think they have at 25, 50, 75 and 100 mgs. I bought a regular Folic Acid (same brand) which comes in 1mg doses and I took 4mgs per day. And the baby aspirin is a low dose which is 81 mgs. Once you start this regimen you continue it unless your doctors tell you not to take it. It is even more important in your pregnancy to continue these (they are not just for conception) because without these specific items you can have pregnancy problems from either lack of Folic Acid (which MTHFR inhibits) which can cause neural tube defects and other issues since Folic Acid is the building block for cells, the Vitamin B for the same reasons (MTHFR) and the aspirin to help avoid any potential clotting issues. The baby aspirin is a small substitute for a blood thinner which is what LD baby aspirin is indicated for in anyone who has heart, vascular issues or clotting. In most cases any person who has MTHFR should be taking a LD baby aspirin for the rest of their lives, not just for pregnancy. But again, all these things should be confirmed with a physician but these are the usual indicated drugs for a person with MTHFR who is pregnant or TTC. The Folic Acid is something that you will need to continue after pregnancy also along with the aspirin, since you have absorption issues caused by MTHFR. Folic Acid is not only designated for pregnancy, it is a part of foods which your body requires to absorb normally and when you have absorption issues caused by MTHFR, you lack normal amounts of Folic Acid all the time. The proper type of Folics that you should take are in prenatals though because the newer types of prenatal vitamins ensure that you don't cause absorption issues with other vitamins. The type of prenatal vitamin that I was prescribed actually comes in a stronger Folic Acid (5mgs instead of 0.4 mgs) and comes in two parts, an AM tablet and a PM tablet so that the Iron and Calcium do not inhibit each other. The brand of that prenatal is called PregVit - Folic 5. I am not sure if that is available in the US or just in Canada. I often read the popular one prescribed for people with MTHFR in the US is called Folgard.
Remember the best situation for your body is that you take these specific vitamins especially the Folic Acid for 3 months before conception. That is the recommended amount of time, but it isn't required. So long as you start now, you will be ahead of the game. Think of it as your holy grail. Many of us know that without these things, we probably would not have conceived let alone carried our pregnancies to term. I can say it has definitely made a difference in my life and I know it isn't co-incidental that I am now just about 18 weeks along. My first pregnancy (and now today 17 months old son) was diagnosed with Down syndrome (which if you read one of my posts here at near the bottom of this forum you will see the relationship to MTHFR), my next three pregnancies ended in losses, at 9w3days, then 4 weeks and 4 weeks. So I don't think it's at all co-incidental that this time around things are great (knock on wood) free of any chromosomal issues and sticking.
Cont in next comment post...
Thank you so much for your help and support! I have a few more questions...if my levels turn out normal...can I continue to try and conceive if I take the prescribed vitamins, a low dose aspirin and a prenatal? Say I do get pregnant, can the blood thinner injections wait until I can get to a dr around 4 -5 weeks (as I no longer have insurance at the moment). How much over the counter B vitamins do I need if I can't get the prescription? Lastly, after I ovulate should I take myself off the LD aspirin or continue on until I see a doc? Sorry, lots of questions! Your forum has given me hope and at first I was overjoyed to have an explanation of what has been going on with me, followed by a sense of sadness wondering if I will ever or should ever try to conceive again. Now I have a renewed sense of hope! Thank you!
Sarah
Sarah
Hello Sarah!! Thanks for the compliments on the Forum.
Firstly... Yikes.. yes the taking of the high dose (even a low dose) will skew the results of your homocysteine blood test. That is why homocysteine levels are checked. Simply because if they are elevated, it can prove to doctors that you are not properly absorbing Folic Acid. I made this very mistake which confused the heck out of my doctors in determining how next to proceed with my testing. Luckily you have your diagnosis about MTHFR already... (I wish they would tell us not to take any Folic Acid or Vitamin B when testing for this). The additional Folic Acid you took will/should correct the levels of homocysteine in your body. So unfortunately the results that they will obtain will likely be incorrect. Mine (and I had just started taking 4 mgs daily at that time) showed low instead of what they likely would have had I not taken the Folic Acid. To this day, I have no idea if my levels would have been high since I never retested for that test, and I never stopped taking the Folic Acid since I was TTC at the time.
The thing is, without the proof that your levels are high - they might not think it is necessary to prescribe you the Folgard or LD aspirin. I would call your MD and explain that you didn't know about this until after the test was taken. Perhaps it wont matter and if they know anything about MTHFR they will provide you with the prescription nonetheless.
Interestingly, I have many of the same issues as you do, and perhaps they are mostly a result of our same diagnosis. I have PCOS (ovarian cysts), endometeriosis, weight loss, and 3 miscarriages. And I would hazard to guess that as you can read, many of us do have the same medical issues. If you were to ask certain MD's about it though, they wouldn't say that it was proven to be the reason. This I have to somewhat laugh at. Hopefully you can see what I mean by that!
In any case if your MD wont give you the prescriptions you can certainly purchase Folic Acid from the drug marts or Walmart for example. You can take a high complex Vitamin B and LD baby aspirin on your own. It's what many of us have had to do in order to conceive. But I do believe the prescriptions are best if you can get them. Explaining to your MD would be your best bet about what happened. And I would do it before your results come in so that they know you aren't trying to be a hypochondriac about your results.
If there is anything I can help to provide you with, please don't hesitate to let me know. I know first hand how hard it is to go through all of this and have a less informed MD then yourself sometimes!
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
Firstly... Yikes.. yes the taking of the high dose (even a low dose) will skew the results of your homocysteine blood test. That is why homocysteine levels are checked. Simply because if they are elevated, it can prove to doctors that you are not properly absorbing Folic Acid. I made this very mistake which confused the heck out of my doctors in determining how next to proceed with my testing. Luckily you have your diagnosis about MTHFR already... (I wish they would tell us not to take any Folic Acid or Vitamin B when testing for this). The additional Folic Acid you took will/should correct the levels of homocysteine in your body. So unfortunately the results that they will obtain will likely be incorrect. Mine (and I had just started taking 4 mgs daily at that time) showed low instead of what they likely would have had I not taken the Folic Acid. To this day, I have no idea if my levels would have been high since I never retested for that test, and I never stopped taking the Folic Acid since I was TTC at the time.
The thing is, without the proof that your levels are high - they might not think it is necessary to prescribe you the Folgard or LD aspirin. I would call your MD and explain that you didn't know about this until after the test was taken. Perhaps it wont matter and if they know anything about MTHFR they will provide you with the prescription nonetheless.
Interestingly, I have many of the same issues as you do, and perhaps they are mostly a result of our same diagnosis. I have PCOS (ovarian cysts), endometeriosis, weight loss, and 3 miscarriages. And I would hazard to guess that as you can read, many of us do have the same medical issues. If you were to ask certain MD's about it though, they wouldn't say that it was proven to be the reason. This I have to somewhat laugh at. Hopefully you can see what I mean by that!
In any case if your MD wont give you the prescriptions you can certainly purchase Folic Acid from the drug marts or Walmart for example. You can take a high complex Vitamin B and LD baby aspirin on your own. It's what many of us have had to do in order to conceive. But I do believe the prescriptions are best if you can get them. Explaining to your MD would be your best bet about what happened. And I would do it before your results come in so that they know you aren't trying to be a hypochondriac about your results.
If there is anything I can help to provide you with, please don't hesitate to let me know. I know first hand how hard it is to go through all of this and have a less informed MD then yourself sometimes!
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
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