questions - MTHFR, ACL antibody, ovulation

[Reebekah]

Hi all

I had an appt. with my RE yesterday. Although I have ALL symptoms of PCOS, she said she cant diagnose it for sure because my blood work came back fine. She also thinks I ovulate, but too late in the cycle. She thinks Clomid with close monitoring is the way to go for me (I conceived my twins on Clomid also). She doesnt think any further testing is needed, and we can start Clomid in March. However, 2 things came back questionable. 1)my anticardiolipin antibodies are "borderline positive" (treatment may range from nothing to baby aspirin to heparin, she wasnt sure) 2) I have an MTHFR gene mutation A1298C (treatment is extra folic acid).

Of course, I had so much on my mind, I didnt ask her all the right quesitons. Based on this info - can anyone help me answer any of these questions:

1)is late ovulation the same as a luteal phase defect?
2)Can late ovulation result in pregnancy without Clomid or other meds?
3)What causes late ovulation?
4)She said I only need to take extra folic acid for the MTHFR a1298c..but I have read stories on the net of women who took aspirin and/or heparin for this...and I dont understand why. My doc didnt say the gene mutation had anything to do with clotting at all, and never mentioned any drugs to treat it other than folic acid. Am I missing something here?
5)Has anyone been “borderline positive” for the ACL antibodies?

Hopefully some of you know something about these issues!
Thanks
Becky

[Gnzls924]

Hi Becky,

you are not alone. I was just diagnosed with this as well and I am still trying to make heads or tails out of it.

Because of my history of DVT, I was on lovenox during my pregnancy. During one of my stays in the hospital after I lost my son, the docs had asked if i was tested for any clotting disorders after my dvt in 2001. I answered no, and so they ran a battery of tests. I think after all the blood they drew, i needed a glass of juice! It was over 25 vials for me.

I had followup blood work done at the University of Chicago. They said that i tested positive for ACL....he said normal was 13 or something like that...and my results were in the 40 range. He said that I am in a hypercoagulable state and therefore i needed to be on Lovenox as a preventative measure.

He said that my homocysteine levels came back to normal with the prescribed increase of the folic acid. The hematologist would like me to continue to take it 4 times a day.

I hope what i typed makes sense, because after reading it again i confused myself. I am hoping that once i touch base with my primary doc at u of c on 3/23, that the hematologist will have written one of those letters explaining what his finding were.

Can you tell me what MTHFR is?

[Pamela]

I know Evie has the MTHFR mutation thing. I don't know what else she has, if it's similar to what you were DX'd with??

Pam

[*Clarissa*]

I can help you with question number 2. My son, Noah, was concieved on a cd 27 ovulation, and no meds.

As for question number 1, I believe the answer is no. I *think* that luteral phase defect is when the luteral phase, the time after ovulation, is shorter than 14 days.

HTH, and good luck with everything.

[saluki_fan]

Luteal phase defect is when the luteal phase (time between ovulation and AF arriving) is less than 10 days. For most women it's 12-14 days, and some doctors believe anything below 12 days is a problem. Your luteal phase must be 10 days or more to sustain a pregnancy.

I don't know the answer to any of your other questions, though. Good luck...

[~Traci~]

1. A Luteal Phase Defect happens after O...the time between O & AF is 10 or less days.

2. Pg can occur w/ late O w/o Clomid or other medican but Clomid can help w/ late ovulation so your dr wanting to try Clomid is good b/c it can bump your ovulation up sooner. The premise behind it is earlier O=healthier egg (most of the time).

3. I've heard a lot of cysters have late O as well as non cysters having late O. I think the theory behind cysters having late O is caused from our eggs not releasing...they just keep growing until they either release or turn in to cysts.

4. You can take baby aspirin (it's over the counter) w/o your drs permission (unless you have allergies to aspirin, they you should ask). It's 81 (or 82) mg children's aspirin (it's chewable) per day. My RE even takes it b/c of heart disease in his family so it won't hurt you (as long as you don't have an aspirin allergy...which I do but my RE said it was ok for me to take b/c it's a small dose) That is the beginning treatment for high ACA's (not ACL's). I know there are a few other cysters w/ high ACA's as well. I know that I've read somewhere that some women that have ACA's, have a MTHFR mutation (or vis-versa) but I don't know what the correlation is between it...

Just b/c your b/w came back normal doesn't mean you don't have PCOS... PCOS is a very complicated diagnoses. It not only includes b/w, but it also should include u/s & symptoms. Some cysters have normal b/w but they have the "string of pearls" on their u/s as well as symptoms. Some cysters only have the "string of pearls" w/o hardly any symptoms & normal b/w....each dx is very different from another one. I was dx'd w/ b/w, u/s, & symptoms. My old RE dx'd me before he even saw the b/w or u/s from just my symptoms.

HTH's
Traci

[Reebekah]

Thanks for all the response so far.

The funny thing is - they didnt want to do ANY testing on me - I INSISTED that I be tested for these various things because I wanted answers for my loss. "IC" may have been part of it, but I cant help thinking there must be more to the story.

Regarding PCOS...my old OB took one look at me (weight, acne, facial hair, infertility) and told me I have PCOS w/o doing any bloodwork. Much later I had an u/s which showed cysts on my ovaries as well. However, this RE, who is supposed to be an expert in PCOS, is telling me she can't diagnose me because the bloodwork is ok. I'm going to continue on as if I DO have PCOS.

Luteal Phase defect - I'm still a little confused. If I "O" late in the cycle, then there is automatically a short time between "O" and AF, therefore indicating a luteal phase defect, right?

ACA - I know that "elevated" levels means you have clotting issues and need heparin (or something like it). Mine came back "borderline". My OB who did the testing said "borderline" is nothing to worry about. My RE is saying that it MIGHT be something to worry about. I guess I need to ask a 2nd opinion about every single little thing now, since I never seem to get a straight answer! Very frustrating. I think I'll take baby aspirin just in case.

MTHFR a1298c - is a gene mutation where your body has issues with folic acid. It's important to note that there are different variations of MTHFR, they are not all the same, and some are worse than others. Mine is A1298C, which appears to be the "least harmful" one. Like I said, the RE only mentioned folic acid as treatment. Then WHY am I reading that some people are treated with blood thinner for this? I dont understand - she never mentioned a connection between clotting/blood thinners and this gene mutation. I put a call into her office with this question, and the nurse called back and left a message on my voice mail saying "the doctor said she already explained all this to you". YES, she explained the folic acid part of it, but that is not what I'm trying to ask her. I just started with her...I really hope I dont have to change docs already.

DIANA - what is dvt? Ok, from what I'm understanding, you have "elevated" ACA levels which is why you are on blood thinners. That makes perfect sense. The part I dont understand is why you are on extra folic acid. I dont think folic acid has anything to do with the ACA levels. Perhaps you also have a MTHFR gene mutation in addition to the ACA? Did they test you? My RE only talked about homocystein levels and folic acid in connection with the MTHFR...not in connection with the ACA or anything else. Does this make sense? If you find out anything at your appt, please let me know. Our losses were very similar in nature, and I'm wondering if we have the same thing wrong with us?

The thing that sucks the most is that nobody can tell me if ANY of this contributed to the loss of Gabriella and Marissa.

Thanks for your help and for listening...
Becky

[Pamela]

Becky, thanks for the explanations.
Sadly, I think you should find a new RE. Somebody willing to work with you. And that nurse that called, what a witch. but I suppose she was only relaying what the doc said. Doctors should discuss issues with patients, not just dismiss them out of hand. I think us ladies with PCOS are MORE informed about our health issues!!
Good Luck!
Pam

[~Traci~]

I personally would find a new RE as well. He doesn't sound nice @ all & his nurse sounds even worse!

The LPD would have to be measured a cycle that you O but didn't get pg in order to get a true indication if you have one. It doesn't matter if you O late. What would matter is the time between said O & AF. If AF is still 12-14 days after O, then you only have late O & no LPD. If AF is 10 days after O, then you have late O & LPD. Clomid is used to correct both of these issues along w/ Progesterone to help w/ the LPD (low P4 is what causes it most of the time).

I would also take the baby aspirin & extra folic acid w/o your drs permission. You can buy folic acid seperately from pre-natal vitamins. I would do it just as a precaution. It didn't matter that I took baby aspirin though b/c I still had blood clots & m/c's even w/ it even though my ACA & APA came back normal w/ no explaination why I keep getting blood clots.

Good Luck!
Traci

[Gnzls924]

Hi becky,

A dvt is a deep vein thrombosus... or blood clot in the vein. I was very lucking that it got "stuck" behind my knee and didn't travel to my heart or lungs. I developed the DVT after being on birthcontrol pills for 6 months. Upon immediate diagnosis...no more birthcontrol pills for me....ever.

the doctors that treated me when i had my dvt just attributed it to being on birthcontrol pills, as is it is a side effect. So they never tested any further. (if you listen to the bcp commercials on tv...they list it as one)

When I found out I was pregnant and because of my history of DVT, the docs put me on Lovenox, which is a low molecular weight Heprin, which is injected just under the skin every day. I did that twice a day during my pregnancy so i would not develop any blood clots because of my changing hormones.

So, after i lost my son, my body was completely out of whack. So please be patient with me as i try to explain...still very confused...They said I have something called hyperhomocysteinemia. I guess the MTHTR (??) is related to it.

I found this website
http://www-admin.med.uiuc.edu/hemato...ysteinemia.htm

I find that i am reading the website very very slowly to try and understand the big words! But after being on the increase of folic acid, my homocysteine levels are now back in normal range.

My mother is convenienced it not from eating my veggies as a kid...okay MOM!

Here is my email address: Gnzls924@aol.com. Please feel free to email me anytime.

I'll keep you posted!!

Diana

[Reebekah]

Thanks to all who responded.

I called my RE's office to ask more questions...what are my homocysteine levels, is my MTHFR homo or heterozygous, etc etc, and they were really rude with me. They basically said that I dont need to know all the specifics - all I need to know is that I have it and I should take folic acid. Well, I'm sorry, but I'm the type of person who needs to know the hows and whys of everything. I just cant be the "polite patient" anymore - look what happened last time! Why cant I just find 1 doctor who will work with me and help me like I need them to?!

Anyway - Diana - there is LOTS of info online about homocysteine and related subjects. If you havent already, check out dvt.net and homocysteine.net. Also, I was wrong, you dont need to have the MTHFR mutation in order to have high homecysteine levels and require folic acid. There are other reasons besides the MTHFR that can cause the same symptoms and require similar treatment.

Gee, I spend so much time researching and discussing and thinking about medical issues.....I should just go to med school.....

:o)
Becky

[Gnzls924]

Thanks becky for the info.

I just hate when I hear that docs' office respond that way. It just burns my buns!

The first hematologist was pretty much laid back about the paperwork thing with me. She was actually called in on my case after i was admitted to the hospital. After insisting three times for a letter of what was wrong with me or a copy of the bloodwork, she still did not comply. Her MO was to say...just have your doctor call me. Hello! this is about me, and I think I should be part of the conversation!

So when it came time to schedule a follow up appointment with her, i told her point blank about my concerns and basically said that i cannot work the way she works and need something more formal. I told her that all i asked for was a letter detailing my diagnosis and you won't provide that for me! She just had this dumbfounded look on her face. i know what she was thinking...she was probably calling me a witch with a b...and frankly i didn't care. After everything i've been through with losing matthew, i just do not look at doctors the same way anymore....they have to earn my respect.

If you can, i would call the doctor directly and tell him what you encountered and how that reaction is not acceptable to you. You want copies of the blood work that you paid for...whether it be out of your pocket or through your insurance.

Go get 'em girl!

[Reebekah]

Thanks.

You know, I called the RE's office 3 days in a row. I asked to speak with the doctor on my 1st message, but a nurse called. When I was telling her the questions I had, she was trying to answer them, but it was SO obvious that she had no idea what she was talking about. So then she tried to write them down for the doc. Then she called me back after she talked to the doc, but her responses did not answer my questions. For example, I asked her if I just ovulate late or had a luteal phase defect, and her response was along the lines of "it doesnt matter, just take the clomid, it takes care of both". Ugh...but I want to know WHY my body needs Clomid. I mean...is that abnormal and/or anal of me to actaully WANT to understand whats wrong with me instead of just doing what they say without questioning it?! Then I asked about getting copies of my reports and she said she has to check with the doctor. Hello?! All I have to do is fill out a request form..they cant keep my own records from me. Then I asked about the whole "I read that gene mutation and/or homocysteine levels are associated with clotting" and she responded that this stuff is above her head and mine. She told me not to read so much. I had also asked about the homo/heterozygous thing and she told me that my docs would discuss it amongst themselves and that I should have my MFM call my RE. First of all, I wont see the MFM until I get pregnant again. Second, I dont want them discussing anything without me being fully aware of whats going on! She was basically saying to me that I'm an idiot and that I cant understand anything and that my medical issues are not my business. I told her I wanted to speak with the doc.

So the next day, a different nurse calls me to get my questions. She said the doc would provide answers through her. Ok, so I guess my doc doesnt talk with patients?! Does that mean that my questions arent important?! Does that mean that she thinks shes too good for a phone consult?! It really really sucks for me, since that office is 1.5 hours away and its the ONLY reproductive endo office around. To get Clomid monitoring and stuff, this is the ONLY place I can go. Plus, they were the only ones who would do all the crazy tests I wanted after my loss. The other docs (OB & MFM) just told me to try again and no testing is needed. I just couldnt accept that. So anyway, my point is that I MUST go back to this clinic at least until I get pregnant. So anyway, this 2nd nurse takes my questions and is able to answer a few of them. I'm heterozygous, which means its pretty common and the least harmful. And they never did homocysteine testing, which is why nurse #1 couldnt answer my questions about it. She also told me that they are willing to retest my antibodies and my homocysteine levels. So I was happy at this point. So then she wrote down my other questions about clotting and ovulation and was to call me back today.

However, when she called me back today, her answers were very similar to nurse #1. Her answer to my ovulation question was "take clomid". I guess that means they dont know the answer to my question but just dont want to tell me. Her answer to my blood clotting questions was "take baby aspirin, it wont hurt". When I asked her what the doctor said about the possible relationship between the gene mutation/homocysteine and clotting (since NO connection was ever mentioned to me, they just told me to take folic acid and thats it), she didnt have an answer. It was one of the questions she wrote down for the doctor. I dont know if that means the doctor didnt know, she didnt bother to ask the doctor, or she didnt understand the doctors answer to convey to me. I dont think they know about the connection between blood clotting and MTHFR/homocysteine that I have found out about via my own internet research. So I made an appt. with a hematologist today.

I'm telling you guys, I'm going crazy. These doctors just think they are almighty and we are nothing. They have no compassion for what we have been through. I'm getting obsessed with finding a reason for my loss, and I know the reason is that things are not properly explained to me by anyone. The thing is, I never know what questions to ask during the appointments, because I havent had the chance to do research on any of the new topics they bring up during the appointments. And if I read even one thing on the internet that I think MIGHT be applicable to me, I research it like crazy, call doctors to ask about it, etc etc etc. I'm SO afraid that if something crosses my mind and I dont pursue it, and then I lose another pregnancy the same way and learn it was caused by something that did cross my mind and that I never followed up on, I will blame myself forever. Does this make sense?! So now I guess I appear to be a hypochondriac to doctors. To them I'm annoying -- to me I'm thorough and proactive. I'm also having major trust issues with doctors. Since I trusted my old OB about IC and then I ended up losing my daughters because of IC --- and since I trusted the high risk hospital where I delivered and they ended up having wrong information in my records and provided me with inaccurate information to questions I asked them ---I now question the accuracy of every single little thing I'm told. I know you cant live like this, and sometimes you MUST trust the doctors. I dont know how to get through this.

Sorry to vent. Thanks for listening. It somehow helps to type this all out, even though I'm sure you guys dont need to hear every single detail of my drama.

Becky

[saluki_fan]

Becky, I am sorry you are dealing with this all now. Maybe the doctor will be more likely to talk to you on the phone if you tell them you are willing to pay a co-pay for the phone consult? I offered to pay one to my new doctor, but he said no thank you. But he did seem impressed that I offered. Just a though.

I know you are in a lot of pain right now. IT IS YOUR HEALTH AND THESE ARE YOUR BABIES. No concern is too small. You are NOT a hypochondriac, you are just trying to make sure you're in good health and there is NOTHING wrong with that.