f/u this week- any suggestions?(long)

pennynjon · January 2011

I have my follow up to my d&c on wednesday. When I found out that I had a miscarriage I was of course a mess. I talked to my doctor and told him I thought something is wrong with me because my losses. He said that he didn't think anencephaly and the miscarriage were related. I told him I can't keep doing this, so he agreed to testing if it would ease my mind since I have paid my maximum for medical bills last year and insurance should have to cover it.

He did talk to me about the possibility of clotting disorders and if I have something we may try heparin next time-but he isn't sure if it would make a difference. I have been on 4mg of folic acid for 7 months now plus my prenatal. I was really upest and I don't think I understood all that he said at the time. They drew a ton of blood that day- at least 15 tubes. I asked the girl what tests she was drawing and she told me she couldn't remember all of them. But she did say a thrombophilia panel and prolactin level I know. They callled last week and told me that my prolactin level was high (41.5) and I will need to have that drawn again in a few weeks. I was pregnant when they drew it, so I thought it would be high. I did have a lot of problems getting my milk to dry up after Ella was born, and it took three months and a round of birth control to get my period back. Even after that I continued to have milk for a couple of months.

This is where I need advice. I feel like the MTHFR thing will come back positive because I have had a baby with a ntd and a miscarriage. So, I feel like I am not absorbing folic acid or something. I have looked up info about Neevo and printed it out. I don't know if he has heard of it, so I will have the info in my purse if he hasn't. I think I am going to ask my doctor change my prenatal to that. And I don't think he will recommend baby aspirin or heparin. I love him, but he seems to think everything is a fluke and doesn't seem very agressive. My friend goes to him and she talked him into testing after 2 m/c. She came back with two copies of the MTHFR( I am probably describing that wrong). Anyway he didn't do anything but put her on more folic acid. She is married to a doctor so he put her on aspirin and some prenantal with the converted form of folic acid. I don't have a doctor husband to do that. So, I want to be prepared at my appt and be able to tell him what I want. I don't want to come across like I don't trust him or I don't think he knows what he is doing. But, I don't want to leave the office with nothing new to help if something is wrong. I may be getting the cart before the horse, and everything may be negative. If you have any clotting/folic acid problems, what was your doctor's plan for you?

Thanks to anyone who reads this really long post!

ColindaP · January 2011

There is a good chance that the two losses are not related. Do you have a reason to think you have MTHFR? I would say wait to see what the RPL panel reveals and to see if you even do have MTHFR. I do think it was smart to insist upon having it run, because it never hurts to find out.

If your losses were caused by a lack of folic acid due to MTHFR, blood thinners won't help. They will thin your blood and reduce the risk of clots, but not make you absorb FA. If lack of FA truly is the problem, the megadose of FA you're on should help more than a blood thinner does. There has been a recent study also questioning if the risk posed by blood thinners really outweighs the potential benefits (here's a link to an article about it: https://www.msnbc.msn.com/id/39915538/ns/health/) Also, and keep in mind this is only anecdotal, an RPL ex-bumpie friend of mine who had, I think, one gene for one of the clotting disorders, was told by Dr Stephenson in Chicago that it's highly unlikely the clotting disorder caused her losses, but her RE had her take aspirin anyway during and after her IVF cycle "just to be safe." She wound up with a massive subchorionic hematoma that stopped bleeding when she stopped the aspirin - the aspirin was causing bleeding.

I say all of this random and seemingly conflicting information because I think clotting disorders are far, far more complicated than "you have this gene, if you do this all will be okay." And I'd be very wary of deciding to take blood thinners on your own, even seemingly harmless aspirin.

Are you seeing an ob or an RE? If you are seeing an OB, I'd ask for a referral to an RE, and seek out one with at least *some* working knowledge of RPL (many do not have any). I think there's a chance your doctor was right, and the two losses are not related; I think there's a chance you're right and they are. And I think you need someone more qualified than an OB to look into this with you. But for now, take a deep breath and wait for your RPL results. This is all premature before you have those.

pennynjon · January 2011

Thanks for your response. I don't have any other reason to believe that I have MTHFR other than the fact that I have read that most women who have baby with a NTD do have it. And the fact that I had another loss after I was on the high dose of folic acid. I guess I just want it to be something I can fix. When I see the million of people who just pop out babies left and right with no problem I don't get why it seems impossible for me. I feel like I lived in a bubble once we started trying last time and it still didn't make a difference. I just don't want to find out something came back abnormal, and not change anything and have another loss. But, I wouldn't start taking aspirin without a doctor telling me too either. I am just seeing a regular OB. I live in a smaller town. I think the closest RE is a few hours away. My doctor has never said anything about referring me. We were sent to a perinatologist when Ella was diagnosed with anencephlay. But, he said I didn't need any testing...just high doses of folic acid.

I know this is premature. I just can't help worrying about it. I just want to be prepared at my follow up so I know what to talk to my doctor about when I am there.

ColindaP · January 2011

Of course, hon, I think everyone here understands exactly how you feel. We all want to know what's wrong, and want it to be something fixable. It's infuriating to not know.

Is there any way you could get even maybe a phone consult with an RE in another town? I just really feel like your questions are so complicated for an OB. (ETA: esp a small town OB. Most OBs deal almost exclusively with healthy, normal pregnancies, and in particular a small town OB will have little exposure to complicated pregnancies, just from a smaller volume of patients) Maybe a consult with the perinatologist too, or instead of the RE?

pennynjon · January 2011

I guess I need to just wait for the results. If they come back positive for anything like that and he doesn't seem sure about what to do I should ask for a referral. I don't mind the traveling. The periantologist was a few hours away too.

That is what I keep telling my husband. I think my doctor is a wonderful OB and trust him completely. I just don't think they see many complicated cases around here, and don't have much experience with all of these specialty tests.

Thanks again for taking the time to respond! I asked you ladies because I knew a lot of you do have experiences with RE's and testing...and that you would probably understand why I feel so desperate to get answers.

Carolee · January 2011

I have MTHFR, the most serious form (2 copies of 677T gene). There is a lot of conflicting information about how much it affects pregnancy and how to treat it. I saw a specialist and his plan for me was Folgard (4.4 mg/day) with prenatal vitamins and baby aspirin if I wanted to take it. He does not think MTHFR caused Eliott's death. He tested my homocysteine levels, which came back normal. With MTHFR, you don't absorb/process folic acid correctly, which can cause an elevation in homocysteine levels. The elevation is what increases the risk for blood clots. If your test comes back positive, you might want to ask if they will test your levels. I asked about blood thinners like lovenox, as I know that many women with MTHFR are treated with them, and he told me that he didn't think it was necessary unless my homocysteine levels were high.

Good luck with your follow-up. I really hope you get some answers. (((Hugs)))

GuppyAmy · January 2011

My thought is wait for all the results to come back and if there is something found, esp. if it has something with a clotting disorder, go see a hematologist. I LOVE my hematologist and she has lots of ideas of things to try. Good luck!

ColleenS629 · January 2011

I don't have any advice, I just wanted to say GL and I hope you get some answers.

pennynjon · January 2011

Thanks everyone:)

rjl07 · January 2011

I don't have any advice specific to the clotting issues, but I agree with Amy about seeing a hematologist or finding an RE that specializes in that if you don't think your OB is proactive enough. I hope you get some answers soon. GL!

damabo80 · January 2011

Just saw this now....I'm sorry for the late reply.

Sounds like you and I are in the same boat here...anencephaly followed by an early miscarriage.

Both my RE and OBGYN don't think my two losses were related in anyway, either, and I'm inclined to believe them:

Anencephaly could be linked to my MTHFR issue, but for the m/c, it was just the odds (1:4). I had a 25% chance it would be a bad combo of egg/sperm, and it was just my turn, or something crappy like that.

During the m/c, I was on 4mg folic acid (for 6 months prior), 3mg of the converetd FA (Metanx) (for six months prior), and lovenox (since ovulation/IUI), and it didn't do a damn thing.

So, I fully support you getting all the tests and then finding out what your options are. You've had two crappy things happen, but the good news is, they really probably aren't related, which means that after you get your dx, and pursue treatment, there should be nothing stopping you from being in that 75% chance of bringing home a healthy child Smile Hugs.

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