I'm so glad to help whenever possible. A real blessing / silver lining about this whole IF process is that we can meet so many great women along the way, and form a real community of information-seekers and mutual-supporters!!
Jlmee, I have compound heterozygous MTHFR mutations, which means one copy of each mutation. My homocysteine level is 5.7. Now, I do know that labs can be different, but according to my paperwork, your level is NORMAL, not low. I know on the other site you mentioned having low homocysteine according to your doctor, but my paperwork indicates that 3.4 is within normal limits [0-12.5]. You may want to get a second dr's opinion about whether your level is too low or not.
Either way, with two mutations, you should definitely be taking two Folgards daily (one per mutation.) That's how much I take. Do keep in mind that you can't just take lots of folic acid without also taking extra doses of the other B-vitamins. Folgard is one brand (there are generics, plus other brands) that give you both the necessary folic acid and the correct amounts of other B-vitamins...
I can almost guarantee that your RE will tell you not to see an RI. Remember that reproductive endocrinology and reproductive immunology are fields that compete for patients. Sadly, many if not most RE's are not trained at all in immunology (it's NOT their field) and, rather than learn all about it, they dismiss it out of hand.
In my case, I'm lucky to live within a half-hour of Dr. Beer's office. So lots of RE's and OB's here are familiar with Dr. Beer's successes and refer patients to him regularly. I'm just warning you to EXPECT that your RE will try to talk you out of seeing an RI.
Dr. Beer is getting better (if anyone reading this didn't know, Dr. Beer is WAAAYY past retirement age, but keeps working out of pure dedication to helping his patients, who average 38 years of age with 4 m/c's and/or 4 failed IVF's prior to seeing him. He contracted a very serious flu some months ago, and came back to work as soon as he felt better, which was much too soon for his body. He ended up losing 12 pounds and being hospitalized and is now recovering.) However, Dr. Beer won't give you an opinion in isolation. Immunologists need to see the whole immunological picture. He's very careful not to "jump the gun" with a diagnosis or recommendation.
One possibility is to speak with Chris, his nurse. She can help you sort out what may be going on from an immunology perspective. I believe what she will tell you is that for homozygous "C" MTHFR, you need to take one baby aspirin and two Folgards daily for the rest of your life. You should begin Lovenox injections on CD6 when ttc. One per day until a confirmed pg, then two per day until you near labor, then resuming two per day until six weeks post-delivery. She will also probably advise you to get additional testing, because MTHFR patients sometimes have other immunology issues going on that can interfere with ttc or maintaining a healthy pg.
In my case, I also have elevated antiphospholipid antibodies and elevated natural killer cell activity. I started out with low blocking antibodies as well (these are good antibodies that protect the embryo and placenta) but those were fixed via Dr. Beer.
As far as the chat on the Yahoo site, I'm not sure anyone uses it. Instead, it's the big huge bulletin board (kind of hard to get used to after the luxury of individual threads here on Fertile Thoughts! However, an advantage is that you see all kinds of information you might not have thought to read about. Just make sure you actually join the group (which involves getting a free Yahoo e-mail account.) That way, you can access the files, which are sooo informative.
Hope that's helpful!!
Jessica, I know what you mean about convincing DH about pursuing this line of treatment. I'm going to cut and paste, below, a post I just wrote on the Yahoo board for a woman whose DH did not want her to get tested for immune issues. I hope it's helpful for you. I've added some [side notes] which are all me talking now.
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Wow, [insert name of woman here], I really hear your pain and feel for you at this time. I am not content with DH's position.
Perhaps the way to approach DH is with the idea that reproductive endocrinology and reproductive immunology are entirely different fields, and only reproductive immunology can inform you of things that impact your WHOLE life, not just IF.
It's critical for women who have m/c's to undergo immunological testing, period. Women's bodies are built to have babies and if that fuction isn't working properly, the whole body must be examined. If you weren't digesting food properly, would he say that he didn't want to spend the money to find out why? What if a big expert told you, well, there's nothing you can do about it? Would he say, ah, that person is famous, so that's the end of it?? Of course not.
I have to admit that one of my HUGE pet peeves is the outlook on IF and m/c as something other than a medical problem that MUST be given 100% attention. The RE world is ONE way to look into the problem. The RI world is another, totally DIFFERENT way to investigate it. How people decide not to pursue TESTING is beyond me. Information is good. Knowledge is power. Your "medical reality" will exist whether or not you do the testing or know the results. It's so very important to make decisions only with all possible information on the table.
And this is your system, we're talking about, not (just) a future baby. Here is what I learned through immune testing:
1) I have inherited thrombophilia, a clotting disorder. Without medication, I am therefore at elevated risk for heart attacks, strokes, DVT, Alzheimer's, and other clotting related problems. By taking one baby aspirin and two Folgards per day for the rest of my life, I am fine! I would have never known this without Dr. Beer's testing. [side note: this is MTHFR]
2) My parents have inherited thrombophilia. They are in their mid-60's. They have spent their WHOLE lives worried about the heart attacks and Alzheimer's that afflicted their parents. They have done everything (diet, exercise, not smoking, etc.) to maintain their health, but have lived under the cloud of unidentified increased risk for those terrible health conditions. MY immune testing gave them both the insight into why their risk has been elevated. They were both tested and are now both taking the same meds I am, and their risk is reduced to normal! This also benefits me, of course, because I love them. [side note again: I'm also talking about MTHFR here]
3) I also have acquired thrombophilia, or APS, or Hughes Syndrome, depending on which country you're in. As such, I'm at increased risk of arterial and venous thrombosis, as well as thrombocytopenia (low platelets). As such, I will need to take one Lovenox injection the day before flying, one injection the day of flying, and one injection the day afterwards. This has NOTHING to do with ttc or pg. Again, I would never have known about this without immune testing.
4) My natural killer cell activity was much too high. In fact, the cells were behaving as if I had cancer! This is commonly linked to endometriosis (which I have) and important to try to fix. This was helped greatly through immune tx.
5) My husband and I were a 50% DQ Alpha match, and I hadn't built up the appropriate antibodies to protect the placenta and embryo from damage by my own cells. This was easily remedied as well.
6) For pg, my protocol is to take Lovenox injections daily starting CD6, twice daily when confirmed pg, through six weeks post-delivery. This is easy to do and NOT just about preventing m/c. This is also about preventing stroke, deep vein thrombosis, pulminary embolism, and heart attack in ME b/c pg is a hyper-coagulant time for the body. I am also helping to prevent a variety of pg complications and to combat the risk of stillbirth.
I understand your DH's hesitation, because it's scary to contradict the big famous doctors. I mean that, I'm not being sarcastic. Your DH may also consider it his job to responsibly guard the family finances. I respect that. But here's where I would draw my line if I were you.
TESTING.
After that, you can reevaluate. If the testing turns up nothing, you've spent
$1200-3000 for peace of mind, which is genuinely priceless. [side note: my insurance covered EVERY PENNY] If there's something revealed in your testing, my God, it's critical that you knew it. You can decide what, if anything, to do at that point.
Some women here have learned they have Lupus. Others found that their underlying depression was due to poor seratonin levels. Still others discovered thyroid problems. All of these problems were real but undiagnosed! Now they can be treated. It is SO important to get this testing.
I hope this is helpful. I'm confident that when your DH realizes the things you could learn (and rule out) from immune testing, he will agree to it. He will understand that you may PRESENTLY have serious medical conditions that the field of reproductive endocrinology simply WILL NOT test for... and will know that it's important for your health to KNOW as much as possible.
I wish you the very best.
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And, here is a post from another woman's DH in response to the first woman's request for help regarding her own DH:
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Hi, as a hubby to one of the group members [insert his DW's name here], I figured I could chime in as a specimen of the uninformed and not-understanding gender (even if I have learned quite a bit from my wife and this board).
DW & I also had several discussions about the cost of the treatments (we being in Germany will not get reimbursed for the testing - as it is done abroad - and most likely not for most the meds). We very quickly agreed that there is no way we would try to get pregnant again unless we could do everything possible to ensure a success (we also know that there are no guarantees). As we decided that we could afford testing/treatment we went ahead on that count (there were many others to consider).
Unfortunately, money is a factor to consider. As many other posters have by now said, not to spend the $$$ for testing is probably counterproductive, as the test results might also have implications for your health outside of pregnancy. It also should be considered that the money spent on testing/treatment (esp. if the insurance company will pay for at least some of it) is fairly minor compared to the 'total cost' of having children (my tax advisor here in Germany told me - when our son was born about 4 years ago - "another EUR 250,000.- down the drain" (about USD 300,000.-)). So, if you are considering having kids (kind of a 'duh' on this board), in the big picture the money isn't so bad - but I also understand that the expense is here and now and if it is really too big, choices must be made (as stated above, DW & I would not have gone forward).
From a medical viewpoint, it is very frustrating how many (most?) OBs appear to take m/c as a fate thing. There is always a reason why a pregnancy fails. Whether this reason can be discovered and/or somehow dealt with is another question. No pregnancy fails just for so (as my wife would say). The cavalier attitude towards this issue is quite upsetting. Why should a woman wait for at least an assessment until she's had three or more m/c?
As you describe your OB/GYN as 'important', it is worthy to note that the medical field has fragmented so much that a really good doc in one field may be rather uninformed about really recent developments in other areas, even if they are as closely related to OB/GYN and RI. Sad, but true. As ego is also a big thing in the medical field (to say the least), it is unfortunately rather difficult as a patient to convince a physician (esp. a preeminent one) to look without prejudice at the work of a colleague. So a reasonable talk with your OB/GYN is probably going to be difficult (at least that was our experience).
Of course, all this being said, it is most important that you do things the way you feel comfortable. Going step-by-step and keeping your options open is certainly a good way to start. Good luck!
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Well, I hope this provides good food for thought. I'm a real supporter of the very important field of reproductive immunology. The great thing is that when we get these issues investigated and treated, our whole lives are impacted for the better. If genetic mutations are involved, then the people we love are helped in their own lives as well.
Best wishes, ladies!!!
Lauren
Heterozygous MTHFR ?
