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39, PCOS, MTHFR double mutation and multiple miscarriages (+3 live children)

post #1 of 8
Thread Starter 
This is probably going to be long so apologizing in advance.

As the title says, I'm 39 (40 in March) and so is my dh. I have 3 live children and have had at least 4 miscarriages. I was diagnosed with PCOS in January 2002 while ttc ds2. I was diagnosed with the MTHFR double mutation in June 2006 while ttc ds3 after 3 early m/cs. I took 1500 mg metformin, low dose aspirin and used progesterone suppositories while ttc ds2 and ds3.

I had a 4th miscarriage in July at 11w. We weren't ttc (actually tta) so I wasn't taking anything for PCOS or m/c before I got pg. I did see a doc when I found out I was pg in May and discussed all of that. He said that since I had gotten pg without metformin I didn't need it. I had started taking the aspirin on my own. He tested my progesterone. It was 14.8. He said that was good so I didn't need progesterone. I know that's above the minimum but it still seems low to me, especially since I did m/c. I didn't m/c until 11w but my baby died at about 8w. I didn't have any spotting so it didn't look like a progesterone problem but I don't know. I tried to have chromosomal testing done but was told they weren't able to get enough cells to get any good results. So, I have no idea why I m/ced this time (not that I have any definitive answers for the other ones).

My dh is coming home soon from a deployment. We will have not quite a month together before he has to leave for another 5-6 months. I basically have one shot to get pg again, assuming that I ovulate while he's home. I have long, irregular cycles so I can't plan with any kind of certainty when I will be fertile. I've decided I should take progesterone this time regardless of whether or not my #s are good. I'm wondering if I should arrange to have progesterone suppositories ahead of time since they'll need to be made, which takes at least 3 days, if I remember correctly, or if I should just plan to call the doc if I get a + hpt and have him call in a script for progesterone pills. I test (and get +) very early, 7-10dpo. I've never used the pills so I don't know how well they work, if they cause stomach problems, etc. I have a very sensitive stomach. I can't even take vitamin supplements because they make me extremely nauseous. Anyone have an opinion on whether or not there's a significant difference in the efficacy of the pills vs. the suppositories? Also, how bad are the pills at causing nausea?

Secondly, I don't know if I should start taking metformin again. The last 2 times I had my blood sugar tested it was normal so the docs told me I didn't need it. I'd prefer not to take it. I'm breastfeeding my 2yo and have concerns about how it might affect his natural blood sugar regulation. OTOH, I'd rather take it than not if it'll keep me from having another m/c. I just don't know what to do about that.

One more qeustion. On the low dose aspirin, I can't remember when to start taking it. Do you start as soon as AF is over and take it the entire cycle or do you not start taking it until after you O?
post #2 of 8
Quote:
Anyone have an opinion on whether or not there's a significant difference in the efficacy of the pills vs. the suppositories? Also, how bad are the pills at causing nausea?
I am not sure if the pill or suppository is better. I have taken the suppository and know it does not show up on a blood test. But it is there where it needs to be but just not in your blood like a shot. When I have cycled I have always started progesterone at o time. I do not wait for a positive pg test.

Quote:
Secondly, I don't know if I should start taking metformin again
I am sorry but I really do not know. With pcos it is pretty common to take but if your blood is coming back fine then I really do not what to say.

Quote:
One more qeustion. On the low dose aspirin, I can't remember when to start taking it. Do you start as soon as AF is over and take it the entire cycle or do you not start taking it until after you O?
I thought if you have mthfr it is recommended to be on baby asprin for the rest of your life due to the possibility of blood clots. But I am cycling and will be on it the whole time. Are you also taking extra folic acid and b vitamins for ther mthfr? That was recommended to me by my re. I just read that you can not take supplements. I am not sure what to say. I am seeing a specialist for my immune issues and she is one of the best and that is what she told me to do. You may have tried this but have you tried taking them at night?

Hth's and good luck. This is definitely a very difficult journey and I am so sorry about your losses.
post #3 of 8
Thread Starter 
Thanks. I was told by my old RE that the P suppositories were better. They don't have to go through the digestive system where a lot of the P is lost. Unfortunately, there is no RE here. The closest one is over an hour away. My dh is essentially never home so that's just not doable for me 2 LOs. Plus, maybe I'm in denial but I was hoping I'd be able to get pg and have a baby without assistance.

Quote:
Originally Posted by Seedlings View Post
I thought if you have mthfr it is recommended to be on baby asprin for the rest of your life due to the possibility of blood clots. But I am cycling and will be on it the whole time. Are you also taking extra folic acid and b vitamins for ther mthfr? That was recommended to me by my re. I just read that you can not take supplements. I am not sure what to say. I am seeing a specialist for my immune issues and she is one of the best and that is what she told me to do. You may have tried this but have you tried taking them at night?
Thanks for reminding me of that. I had forgotten about the extra folic acid. I already take a super-B supplement. I can take certain supplements. It's tricky for me. I can't take too many or I'll get sick no matter what they are. I have to spread them out during the day and make sure I've had something to eat right before I take them. I have not yet found a multivitamin of any kind that doesn't make me sick no matter what I do.

The doc who diagnosed we with the double MTHFR mutation said there was disagreement about whether that, in and of itself, increased the chances of blood clots. There is info out there that says maybe that only occurs when it's in association with another immune or blood-clotting problem, like Factor V Leiden (I think that's what it's called).

I guess the thing to do is make an appointment with my doc. He's very hands-off, though, so I feel like I need to know exactly what I want/need before seeing him so he doesn't talk me out of something again.
post #4 of 8
No real advice but- when you had your blood sugar checked was it a glucose tolerance test, a regular glucose blood test based on fasting or what you ate, or was it your A1C?

I'd have them check your A1C which is sort of like having a history of your blood sugar levels for the past few weeks maybe even months. You want that to be below 6 or 6%. If it were even 6.1 *I* would be on the metformin.

Also, from the research I have done (although I just had a mc so what do I really know!) that women with PCOS who are on metformin while pregnant have a smaller chance for miscarrying. Hold on and I'll try to find the study...

http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

I took at little detour and found a clinical trial being run in Finland on metformin, pregnancy rates, miscarriage rates, and pregnancy complication rates...the preliminary result are due in November 2009 so that's exciting!

Anyway, I wish you the best and hope you have a new little family member soon. (Oh, and thank you for your service to our country. Without your willingness to support your DH's job he couldn't be out in the world protecting me. I sincerely appreciate the sacrifice you and your family have made for my safety. Thank you a million times over!)

Jenne
post #5 of 8
Thread Starter 
Quote:
Originally Posted by Jenne View Post
No real advice but- when you had your blood sugar checked was it a glucose tolerance test, a regular glucose blood test based on fasting or what you ate, or was it your A1C?

I'd have them check your A1C which is sort of like having a history of your blood sugar levels for the past few weeks maybe even months. You want that to be below 6 or 6%. If it were even 6.1 *I* would be on the metformin.

Also, from the research I have done (although I just had a mc so what do I really know!) that women with PCOS who are on metformin while pregnant have a smaller chance for miscarrying. Hold on and I'll try to find the study...

http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

I took at little detour and found a clinical trial being run in Finland on metformin, pregnancy rates, miscarriage rates, and pregnancy complication rates...the preliminary result are due in November 2009 so that's exciting!

Anyway, I wish you the best and hope you have a new little family member soon. (Oh, and thank you for your service to our country. Without your willingness to support your DH's job he couldn't be out in the world protecting me. I sincerely appreciate the sacrifice you and your family have made for my safety. Thank you a million times over!)

Jenne
Thank you for all of that.

I have had each of those tests done at various times. It's been a few years now. I always think I should get my blood sugar checked regularly but the docs I've seen say it's not necessary. My test results were never positive for high blood sugar. Once or twice I was borderline so I was given metformin just in case only because we were ttc. I know it's supposed to reduce the higher risk of m/c in women with PCOS but since there's always been some question about whether or not I really needed it I decided not to take it since we aren't ttc. 3 of my 4 m/cs occurred while I was taking met.
post #6 of 8
I just wanted to throw in that I am also homozygous for MTHFR - and was told to be on low dose aspirin at all times and I also take Folgard - which is extremely high doses of folic acid and and b vitamins, just compacted into a pill. You are supposed to take 1 for each mutation, so I take 2. It's only available with a prescription, but it's nice because you don't have to swallow a million pills each day. But I can't state it strongly enough - for you the folic acid is EXTREMELY important for preventing some very serious health problems for your baby, since the MTHFR prevents the proper metabolizing of folic acid.

The best of luck to you - really - I hope that the universe lines up to give you and your family another healthy babe!

- Sarah
post #7 of 8
I have PCOS and used fertility treatments to get pg with dd 2. My sugar, A1c and glucose never showed a problem but I was clearly not ovulating and hte one month I did (on fertility drugs) miscarried. Once I was on Metformin I had no more issues. I also think I read somewhere that Metformin can also help with other subclinical PCOS related issues (high triglycerides etc).
post #8 of 8
Thread Starter 
Quote:
Originally Posted by sarahcecile View Post
I just wanted to throw in that I am also homozygous for MTHFR - and was told to be on low dose aspirin at all times and I also take Folgard - which is extremely high doses of folic acid and and b vitamins, just compacted into a pill.
Oh, ok. I'll bring this up with my doc. There seems to be so many differing opinions on all the stuff. It can be very confusing and frustrating for me. I think the Folgard is what I took when I was pg with ds3. I was taking a script folic acid with a couple other b vitamins in it.

The PCOS thing is hard for me to accept even though it's been almost 7 years now since I was diagnosed. None of my bloodwork has ever shown anything definitive. The only thing was my first 3 hour GTT, my first and 2nd #s were on the high end of normal. My RE said they were borderline and put me on metformin just in case. He didn't even think I had PCOS but agreed to test me for it after I got ovarian hyperstimulation syndrome from my 2nd IVF cycle. He said he was very shocked that any of my glucose #s were high. My 3rd # was low, though. I did not have any cysts at that time. Every glucose test I've had since then has been normal. The last time I had an u/s I did have the string of pearls cysts but that was several years ago, before I got pg with ds3.

I do O on my own sort of regularly. I have long cycles but not extremely long. ATM, my average O day is cd28 and my average cycle length is 40 days. That's not too bad. I got pg with ds3 from a cd30 O even though I was on metformin. I got pg with ds1 totally by accident. With ds2, I was on the met and had started taking the low dose aspirin on my own but had not yet been diagnosed with multiple m/cs or the MTHFR mutations so was not taking the mega doses of folic acid. Both ds1 and 2 are fine.

I have only one shot at this. My dh will be home for about 3 1/2 weeks, from 12/10-1/05. Right now, if my cycles stay as they've been, I'm scheduled to O New Year's weekend.
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