I got a call from my doctor's nurse today. She said the result of my homocysteine test was back and that my level was low. Apparently the normal range starts at 5 and I had a 4.18. I have no idea what that means. Obviously it's good that it's not high (above 10) because that means it would cause an increased clotting risk in addition to my FVL. She didn't seem concerned that it was low, so I'm guessing it's not bad. I've been trying to find ranges for homocysteine levels and the significance of low levels online but I can't find anything but the risks of elevated homocysteine. She said given my history they want me on 4mg of folic acid and 500mcg of vitamin B12, which makes sense because of the whole MTHFR causing neural tube defects thing.
My OB consulted with the Peri and they decided that I will be put on 40mg of Lovenox daily once fetal heart tones are found. I will also do the nuchal translucency u/s at 13-14 weeks. They have discussed putting me on baby aspirin (BA) for life but I am not encouraged to use it while trying to conceive. The Peri also wasn't concerned with my positive ANA just yet so they will recheck in 6 months to see where my levels are at and go from there.
I'm a little upset. Based on the conversation with my OB, it sounded like I was going to start Lovenox as soon as I got pregnant. She also told me that I could go ahead and start taking BA while TTC, or even take a full strength aspirin for now if I wanted. Now, after talking with the Peri, that has changed? When we saw the Peri before any of the clotting disorders were known, she mentioned that she would put me on BA only after fetal heart tones were detected. She didn't want me to be on it in case I miscarried. I feel like that is transitioning into her view of when to start the Lovenox and now that I can't be on BA. To me, if they think that these disorders are serious enough for me to take a BA every day for the rest of my life, then why would I not even be on BA when TTC? Pregnancy is a hypercoagulable state and I'm already in a hypercoagulable state when I'm not pregnant!
I've had bleeding as early as 6 weeks in both of my pregnancies and they found the SCH at my 8+ week u/s during my last one. I'm not going to start off the next pregnancy the same exact way as my last 2 and wait until 8 weeks to change anything (other than the vitamins, of course). The damage could already be done and that could be too late. What if something is happening at implantation? Maybe my losses were only due to genetic problems because of MTHFR and the increased folic acid and B12 will fix everything. But what if FVL played a part too? I don't want to treat one before I ever get pregnant and not even prepare for the other. I've decided that I'm going to stay on BA until I start Lovenox. Based on my research, the benefits of being on it early outweigh the risks. I feel like a BA is not enough to cause significant problems if I do miscarry early during pregnancy and if I don't, then the benefit of thinned blood will already be there.
I love my OB and really like the Peri when we met her, but I'm having such a hard time trusting doctors. Not just my doctors, but any doctors. All of them have differing viewpoints and different ways of treating patients. It's hard to accept the plan they are creating for me when I see other women like me have a different plan of action. I don't know if I can ever truly trust the decisions they make until I bring home a healthy baby. I hate not having trust in the medical community at large but I feel like they have failed me in some ways. I also recently watched Michael Moore's "Sicko" (behind the times, I know) which has me really disappointed in the American health care system right now. I should just move to Canada where prescription medication is inexpensive (hello cheap lovenox!) and there is no $3000 fee to take home your baby. They let you have them for free! I think I'd very much like a free baby. :)
Tuesday, July 20, 2010
Monday, July 19, 2010
My blood sucks
I can't believe it has been 3 weeks since I updated my blog. I've been waiting for all the results of my blood tests to come back before I posted, which has been long and complicated. The last thing I wrote about was right before going in for the SECOND blood draw. Well, they drew blood for the two tests that were missed and apparently one of the tests previously ordered was wrong, so they had to take blood to redo it. That was another 5 vials.
I finally got a call back that some of the tests had come back abnormal and the doctor wanted me to come in and talk about them. We had our appointment on July 12th, which is when I found out that I have Factor V Leiden. I was upset because the one nurse that read my results said that test looked normal. She obviously didn't know what she was talking about. My OB had called the Peri and tried to talk to her before our appointment but she wasn't available. She said she would see what the recommendations of the Peri were, but her thought was that I would go on blood thinners, probably Lovenox, as soon as I get a BFP. They will still monitor for IC in addition to this. She also suggested I go ahead and start taking baby aspirin now, so I'm already on something for whenever I conceive.
Factor V Leiden is a mutation of the Factor V gene, whose normal function is to promote clotting when it is triggered. APC (activated protein C) binds to normal Factor V, telling it to stop clotting when it's done. With Factor V Leiden, the binding site is different (mutated) so it takes APC much longer to bind the Factor V Leiden and stop clotting, leading to over-clotting. I'm only heterozygous for the mutation (1 gene) so I'm guessing I got it from my father who had a stroke late last year. He and I don't have much communication but she suggested that I find out if he was ever tested for this after his stroke. This is a cause for repeat pregnancy loss, usually after 10 weeks based on what I've read. I was sad to find this out in addition to the other possible reasons for my losses (IC and bacterial infection) but glad to have a definite diagnosis of a potential cause. I also talked to her about testing for MTHFR, which I read reduces your body's ability to metabolize folic acid (which I previously thought I might have a deficiency of during pregnancy) and I had seen several women on BBC that had both. She was a little surprised the Peri hadn't ordered it in the first place and agreed to test for it.
I just got a call on the 15th from the nurse that said I was also heterozygous for MTHFR and that I needed to come in for more blood to check for homocysteine levels. I left a little early from work and shed a few tears at home that night. It's so strange because I wanted answers; I wanted a reason for my losses and something that could be fixed. Now I'm a little overwhelmed because I have all these other risk factors against a healthy pregnancy. I had really hoped that they would all come back negative and my losses were just bad luck and we would just have to monitor for infection and IC.
I am glad to know, though. It's a relief. I now have an actual diagnosis of disorders that were the cause of or contributed to my sons deaths. Combined, these disorders are known for recurrent pregnancy loss. One statistic I read said that untreated pregnancy success rates are 50%. 50%!!! With medication they go up to the typical 75-85%. I feel like my babies barely had a chance. Even if I had no issues with the clotting portion of my disorders, which lots of women have normal pregnancies without medication or assistance, the MTHFR can cause neural tube defects due to folate deficiency. My babies could have had any number of fatal genetic defects that caused their deaths. Unfortunately, they never did genetic testing on them so we will never know.
So, no more hormonal birth control for me ever due to increased risk of clotting. I will probably always have to consider these disorders with surgery, airplane rides, etc. Any pregnancies will include daily injections of Lovenox into my stomach (how fun) and high doses of folic acid. I'm still waiting to hear back on my homocysteine levels, which will determine how bad my clotting risks are associated with MTHFR. Lots of homocysteine = bad. I think it may also help determine what my Lovenox dosage will be, but I'm not sure on that. This is all so new to me. I've been doing so much research and am thankful to have my microbiology background so that I can understand much of it and read more into the technical details. I really hope that these are the reasons for my losses so we can prevent anything so horrible from happening again. I don't think I could handle anything more.
For now, Andrew and I are just going to see what happens. I will keep taking all my vitamins and when I get pregnant, go from there. I have to think positive because what else is there?
I will leave you with a funny quote from Season 4 of The Office that I'm reminded of every time I have my blood drawn (which is a lot!):
(Michael asks Jim if he will go camping with him and he responds...)
Jim Halpert: Oh I can't go today because... I'm giving blood.
Michael Scott: How often can you actually donate blood?
Jim Halpert: Is there, a limit?
Michael Scott: Your body only has a certain amount.
I finally got a call back that some of the tests had come back abnormal and the doctor wanted me to come in and talk about them. We had our appointment on July 12th, which is when I found out that I have Factor V Leiden. I was upset because the one nurse that read my results said that test looked normal. She obviously didn't know what she was talking about. My OB had called the Peri and tried to talk to her before our appointment but she wasn't available. She said she would see what the recommendations of the Peri were, but her thought was that I would go on blood thinners, probably Lovenox, as soon as I get a BFP. They will still monitor for IC in addition to this. She also suggested I go ahead and start taking baby aspirin now, so I'm already on something for whenever I conceive.
Factor V Leiden is a mutation of the Factor V gene, whose normal function is to promote clotting when it is triggered. APC (activated protein C) binds to normal Factor V, telling it to stop clotting when it's done. With Factor V Leiden, the binding site is different (mutated) so it takes APC much longer to bind the Factor V Leiden and stop clotting, leading to over-clotting. I'm only heterozygous for the mutation (1 gene) so I'm guessing I got it from my father who had a stroke late last year. He and I don't have much communication but she suggested that I find out if he was ever tested for this after his stroke. This is a cause for repeat pregnancy loss, usually after 10 weeks based on what I've read. I was sad to find this out in addition to the other possible reasons for my losses (IC and bacterial infection) but glad to have a definite diagnosis of a potential cause. I also talked to her about testing for MTHFR, which I read reduces your body's ability to metabolize folic acid (which I previously thought I might have a deficiency of during pregnancy) and I had seen several women on BBC that had both. She was a little surprised the Peri hadn't ordered it in the first place and agreed to test for it.
I just got a call on the 15th from the nurse that said I was also heterozygous for MTHFR and that I needed to come in for more blood to check for homocysteine levels. I left a little early from work and shed a few tears at home that night. It's so strange because I wanted answers; I wanted a reason for my losses and something that could be fixed. Now I'm a little overwhelmed because I have all these other risk factors against a healthy pregnancy. I had really hoped that they would all come back negative and my losses were just bad luck and we would just have to monitor for infection and IC.
I am glad to know, though. It's a relief. I now have an actual diagnosis of disorders that were the cause of or contributed to my sons deaths. Combined, these disorders are known for recurrent pregnancy loss. One statistic I read said that untreated pregnancy success rates are 50%. 50%!!! With medication they go up to the typical 75-85%. I feel like my babies barely had a chance. Even if I had no issues with the clotting portion of my disorders, which lots of women have normal pregnancies without medication or assistance, the MTHFR can cause neural tube defects due to folate deficiency. My babies could have had any number of fatal genetic defects that caused their deaths. Unfortunately, they never did genetic testing on them so we will never know.
So, no more hormonal birth control for me ever due to increased risk of clotting. I will probably always have to consider these disorders with surgery, airplane rides, etc. Any pregnancies will include daily injections of Lovenox into my stomach (how fun) and high doses of folic acid. I'm still waiting to hear back on my homocysteine levels, which will determine how bad my clotting risks are associated with MTHFR. Lots of homocysteine = bad. I think it may also help determine what my Lovenox dosage will be, but I'm not sure on that. This is all so new to me. I've been doing so much research and am thankful to have my microbiology background so that I can understand much of it and read more into the technical details. I really hope that these are the reasons for my losses so we can prevent anything so horrible from happening again. I don't think I could handle anything more.
For now, Andrew and I are just going to see what happens. I will keep taking all my vitamins and when I get pregnant, go from there. I have to think positive because what else is there?
I will leave you with a funny quote from Season 4 of The Office that I'm reminded of every time I have my blood drawn (which is a lot!):
(Michael asks Jim if he will go camping with him and he responds...)
Jim Halpert: Oh I can't go today because... I'm giving blood.
Michael Scott: How often can you actually donate blood?
Jim Halpert: Is there, a limit?
Michael Scott: Your body only has a certain amount.
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