So I have had so many thoughts and feelings these past couple of weeks and I am not sure about anything anymore. What I do know is, I am about to ovulate any day now. What I am not sure about is all of the steps I'm taking to ensure this one sticks. And I simply just don't like my REI doctor anymore. It sucks because there are very few immunology doctors in my area. And I feel like if I find a new doctor at this stage - I'm essentially starting over. Back to square 1. And I just don't know if I have the head for that. BUT. If I do miscarry again - I am finding a new doctor. Period.
So here are my concerns.
1. Prednisone. I have read from many other women on my immunes forum that their doctors start them on at least 20mg of Prednisone from the day after ovulation until you get a positive pregnancy test. The reason they start the day after ovulation, is that there is a possibility that the steroid can interfere with ovulation. I started prednisone on cycle day 7 as my doctors instructions and these past two months have failed to conceive. I'm not entirely blaming the prednisone - I'm simply saying it hasn't happened while ON the prednisone. So who knows. I am going to go ahead and start AFTER ovulation, and hopefully I can ovulate naturally without any interruptions. I also questioned her today on being on such a low dose when others start on higher dosages. She stated that it all depends on my TNF levels and if they came down or not. Never once did she insist I have them retested to ensure my dosage of prednisone would be enough to be effective or not. So I am thinking the dosage would be - and now it may be too low to even matter. Very annoying. So now I am going in tomorrow to get my TNF level retested - and since it will be on a tuesday - my results probably won't be in til next week. I ovulate this week and need to start prenisone asap after ovulation. So who knows if the dosage is going to be enough - and I won't know that until I get those results. It's pretty shitty that I have to do all of this research, then approach my findings to my doctor for her to say "oh yeah, you need those levels retested before we can determine dosage"...she just automatically gave me a dose and didn't question further if it was even going to be enough!!! Highly irritated about that.
2. Progesterone. These past two months, I have passed a very large clot of tissue when I got my period. This never happened before and the only time I've passed tissue like that, is when I miscarried. I know for certain I wasn't pregnant - and still passed this tissue. So I looked it up and turns out if your lining is too thick, and can cause you to shed your lining at once. It's called a "decidual cast" and it basically comes out like the lining of your uterus. Pretty effing gross. This can happen with miscarriage, but can also happen with hormones. I never felt I had a progesterone issue. My periods were always like clockwork 28 days, 5 days of bleeding, ovulation normally at 14 days. Textbook cycles. Also whenever I would have scans - my lining would always be nice and thick...perfect. But my doctor wanted to put me on 600mg of progesterone after ovulation as a "just in case". Since then, every month these past two months I have passed these enormous clots of tissue. It also makes me wonder if that is why I haven't conceived as well. If the lining is way too thick - the baby can't implant. So that is just another thing I am changing this cycle. I am not starting progesterone after ovulation. I have decided I will go in on a day 7 past ovulation scan to check the lining of my uterus to make sure it is at the thickness it needs to be at and that my levels are good. If they aren't - I will then take the progesterone. But I am definitely skipping it this time around and going natural.
3. Intralipids. Last month I decided I wasn't going to do this until a positive test. Well I changed my mind and I am giving it one more go this month. I should ovulate during this week and not on a weekend so it should be easier to time a nurse accordingly. I just don't want to have any regrets on that if I do end up pregnant this month - I want to be sure I did the intralipids because they are important in this mess.
So there you have it. I am not sure if taking matters into my own hands is a smart idea or not. I don't even know if all of this - whether I follow my doctors protocol or my own will make a difference regardless. I honestly feel I am still not being aggressive enough deep down. I feel that the things I am doing are just not going to cut it. But we will see. I have done so much research on this stuff just so I can get a better understanding with what is going on with me. I found about hydroxychloroquine which I have been on for 3 months. My doctor didn't want to prescribe that to me. I had to do it on my own and find a doctor who would listen. So I feel, when it comes to your health and your body, sometimes you have to take matters into your own hands. I am just another patient. I am nobody special to her. I am a dime a dozen in her waiting room. She doesn't truly care about my well being. I'm not saying she doesn't care - Im saying she doesn't care to the extent that I care. So that is why I need to follow my gut and do what I feel is right. Hell, I've done so much research sometimes I feel like I could be the damn doctor!
Anyway, If I do miscarry again. I am dropping my doctor - and going a very hardcore route. I will make an appt with the top reproductive immunologist in the country - Dr. Braverman. And I will see what he can do for us. He states that 80% of his patients leave with a baby. He will be my last hope here. He is very expensive...but if I can just get and stay pregnant - it will all be worth it.
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