Moving Forward

I know I promised an update concerning our follow-up appointment(s) with my doctor, I just haven't felt much like posting. Mostly because I'm not sure how to go about explaining anything here on my blog. But I'll do my best. Warning: this is going to be long and most likely confusing. Read at your own risk!

As I mentioned in my post on Aug. 23rd, I was diagnosed with PCOS in June of this year. What the heck does that mean? Good question, I'm still trying to figure it out myself. Actually, I have a pretty good grasp on the subject, it's just hard to put into words and relay it in non-medical terms. So forgive me if this sounds confusing...cause it's confusing anyway! PCOS stands for Polycystic Ovarian Syndrome and can affect pretty much every system in the body (link to TONS of info). When it comes down to it, PCOS is an endocrine disorder that causes hormone levels to be out of whack which causes the cardinal symptoms: obesity, excess hair growth, acne, male-pattern hair loss, high blood pressure, elevated blood lipids, insulin-resistance (the precursor to diabetes), polycystic ovaries, lack of ovulation, ammenorrhea, infertility and more. Luckily, I do not have most of these symptoms. This actually explains a lot, because if you remember, my cholesterol and triglycerides were high a couple years ago. I successfully lowered both by taking garlic and fish oil supplements, but my PCP and I were still at a loss as to why they would be so high in the first place in a normal-weight 21 year old. My blood pressure has also been borderline high at 130/80. Sometimes it's lower, but it should always be lower. The whole reason I stopped taking my birth control pills in February 2008 was because my blood pressure got up to 150/100 one day at work, and on almost a daily basis my heart felt like it was going to beat out of my chest at 120+ bpm...without exertion! Luckily that hasn't happened again since shortly after I stopped taking birth control. But that's when the other symptoms started surfacing. My cycles were very irregular, but this is quite common after coming off the pill and can take up to 6 months to regulate. But then my cycles stopped altogether, and I knew that wasn't normal (and I wasn't pregnant!).

The possibility of PCOS didn't enter my mind until earlier this year when I started googling long and/or absent cycles. PCOS came up a few times and I read through the list of symptoms. The first and most distinctive symptoms are obesity and excess hair growth and since I have neither, I kept discounting it as an option. But it kept coming up and then I saw the symptoms of high blood pressure...and then high cholesterol...and I started to think "huh, that would explain a lot." Then at the end of May when my Dr said she wanted a pelvic ultrasound, I guessed she wanted to check for polycystic ovaries. And I was right. And it felt so good to have an answer to the past 16 months! We were going to start on Clomid to help us get pregnant (because I wasn't ovulating regularly), but that's when we learned we were already pregnant only 2 weeks later, so no Clomid! But we all know how that turned out. Apparently PCOS can increase the risk of miscarriage to as high as 50% due to hormonal imbalances. I did not know this. So now as of August 4th I am on a diabetes drug called Metformin. Not because I have diabetes...I don't even have insulin resistance, one of the key symptoms and problematic factors of PCOS. According to my lab work, my insulin and glucose levels are fine. However, Metformin has been shown to improve the way the body uses insulin even when an insulin problem isn't apparent. For women with PCOS, it can help restore ovulation and regular cycles by correcting hormonal imbalances at a metabolic level. It can also help "cook the egg" properly to reduce the chance of chromosomal abnormalities (which are increased in PCOS). I've been on Metformin now for 6 weeks, and have already noticed a difference. Two weeks ago I had another ultrasound done, and my right ovary looked completely normal. It was polycystic in June. Maybe it's just a fluke, or maybe the Metformin is working already. Either way, I was happy with that result! The left still had several tiny cysts, all <1cm in size. And luckily, I have had (almost) none of the nasty side effects that Metformin can cause. I am quite lucky in that regard. :-) I will continue taking the Metformin indefinitely until we get pregnant again, and then through 12 weeks gestation as it can greatly reduce the chances of a first trimester miscarriage in patients with PCOS. Knowing this does make "next time" seem a little less frightening because we know at least this will be something different that we didn't do last time. Hopefully it works.

Now that I've exhausted PCOS, lets move on. Since the latest miscarriage, Scott and I have had a bunch of tests done. We did have chromosomal testing done on the baby but those tests were inconclusive due to insufficient "viable tissue". Scott and I both had chromosomal testing done as well, and we are both chromosomally normal (woohoo!). I also had a ton of bloodwork done as part of what is called the Repeated Pregnancy Loss panel...it tests for a bunch of different things including lupus, antibodies, protein and clotting disorders. Everything was negative except for one. I have 2 mutations of the MTHFR gene, which stands for Methylenetetrahydofolate Reductase...yeah, try saying that 10 times fast. Here is a link to someone else's blog entry that explains MTHFR very well. If you're curious, I encourage you to read it. But in short, MTHFR is a mutation which impedes the normal metabolism of folic acid as well as the conversion of the amino acid homocysteine into another amino acid that the body can use. Because of this, homocysteine levels CAN be elevated, which CAN cause an increased risk of clotting issues, which CAN cause miscarriage due to improper implantation or blood supply in early pregnancy, or stillbirth due to clots in the placenta and impeded flow of blood and nutrients to the baby. There are 5 different combinations possible for inheriting the MTHFR mutations...unless you count NOT having it at all, then there are 6. :-) Anyway, there are 2 different types, the A mutation (less problematic) and the C mutation (more problematic). You can have one of either (1 A OR 1 C), two of the same (2 A's OR 2 C's), or one of each (1 A AND 1 C). I have the last combination, 1 A and 1 C, making me "Compound Heterozygous" for the MTHFR mutations.

This is where it gets complicated (HA! And you thought it already was!). I want to preface this by saying I LOVE my doctor. Very much. She is amazing with her patients and very knowledgeable, and out of all the Dr's I work with I chose her. But I also feel kind of awkward seeing her (or any of the Dr's I work with) because I don't feel like I can question anything...I'm just the patient, yes I'm a nurse now, but I'm not a doctor. But since I work with her, I feel very strange questioning anything she tells me. It's just an awkward situation. Anyway, she has told me that this diagnosis of MTHFR is nothing to worry about. I will be taking a baby aspirin every day in addition to extra folic acid due to the issues with folic acid metabolism, but other than that there is nothing we need to worry about. This is not what I have found online. Unfortunately, I do not have any hard and fast evidence for what I have read online...most of it is just other patients like myself on message boards telling each other what their doctors have told them and the treatment(s) they are receiving. We're all just trying to understand what this is and how to go about having healthy pregnancies and babies. If you read the link I posted above explaining MTHFR, you will find that my diagnosis of Compund Hetero MTHFR is the 2nd most concerning form of the mutations. However my Dr is not concerned and does not think I need to be on blood thinners once we get pregnant again. At my appointment a couple weeks ago she could sense my apphrehension about this and referred me to a Perinatologist (a high-risk OB). I had that appointment last Friday, and I left there crying and so frustrated because they told me the same thing..."don't lose sleep over this". Too late, I already have. So neither of my Dr's will let me take blood thinners for two reasons. 1) I am heterozygous...doesn't matter that I still have 2 mutations, I only have 1 of each making me heterozygous for the gene. If I had 2 of the same ones (Homozygous), they would be more concerned and would put me on blood thinners. 2) My homocysteine level is normal. My level was 9.8, and the labwork printout suggests it needs to be <10. I barely pass. If my homocysteine level were high, that would mean I am at increased risk for blood clots but since it's normal I am not (this is what they're telling me...the article I linked to says that a normal homocysteine level doesn't always mean you're safe).

Basically I'm scared. I've lost two babies, I have the right to be scared. Yes, I understand that the most likely reason for my 2 first trimester miscarriages was my PCOS. We're treating that now. Most likely, it won't happen again...and if it does, at least we're attempting to treat it. But MTHFR, although it can cause 1st trimester miscarriages, is most known to cause 2nd and 3rd trimester miscarriages and stillbirths. Fantastic. Now I won't just be scared through the first 12 weeks, now it's going to be the whole entire pregnancy, each and every time! The prophylactic (preventative) treatment for this would be blood thinners. A daily injection for the entire pregnancy. I understand blood thinners are nothing to take lightly...but I also don't want to lose another baby (duh!). Here is my logic: 4 things could happen. 1) We get pregnant again, I take the Metformin, extra folic acid and baby aspirin and everything is fine, 2) We get pregnant again and I take all of the above and everything ISN'T fine...we lose the baby, 3) I take all of the above AND lovenox or heparin throughout the pregnancy and everything is fine, 4) I take all of the above AND lovenox or heparin and we still lose the baby. I would rather it be option #3 or 4 because at least then if we do lose another baby we know we did everything we could. Yes, I know I may not NEED the blood thinners. But I'd rather not find out the hard way that I DO need them. I'd rather take them and NOT need them...but not know I don't need them because we get a healthy baby out of it. Am I making any sense? I just wish I could convince someone to take the "better safe than sorry" approach. If we do go on to lose another baby they would most likely let me use lovenox or heparin after that, especially if it were to be a 2nd or 3rd trimester loss. So why not let me take it now and prevent another loss? I just don't get it. I know I know. I might not need it. Everything might be fine. Perhaps they are both right and I'm just nuts. But what if they aren't. Most everything I'm reading online tells me I need to be on lovenox and that it is harmless especially in the lowest prophylactic dose of 40mg/daily...which is all I want. This is just so extremely frustrating.

So where do we go from here? Well, we are going to try again. I'm taking the Metformin, baby Aspirin, and extra folic acid along with everything else I was already taking (prenatal vitamins, fish oil, vitamin E, extra b-vitamins). Also to help control my PCOS I've purchased a couple of "PCOS Diet" books. Not to lose weight, but to try and control hormonal issues through what I eat. No more junk food or refined sugars and carbohydrates for me. Well, I shouldn't say NONE...just very limited. No more caffeine or soda. No more fake ingredients and preservatives. I'm now drinking a minimum of 2 liters of water a day, usually 3 or 4. I've also started exercising...or trying anyway, lol! I did really well for about 2-3 weeks. I've fallen off the bandwagon since then. But just by changing what I'm eating I've already lost 8 pounds. That wasn't the goal, nor did I need to lose weight, but it is nice to be able to wear some of my clothes I've had in boxes for a couple of years...some things I haven't been able to wear since right after we got married! If I can't be pregnant right now, at least I can wear what I want? Nope...still not a fair trade-off. :-(

Did you make it through all that? If so, congratulations! Did you understand half of it? Double-congratulations!! If you have questions for me, I will attempt to answer. In the end, we've realized that no matter what gets thrown at us, we just have to step back and let the One who is in control of it all carry us through. As I've said before, none of this is a suprise to Him. We may never know the "why" to what's happened or what may happen in the future, but we have to do the best we can with the knowledge we're given and trust Him for the rest. Waaay easier said than done. I find the following verse more appropriate than ever:

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6

~Abigail~