PCOS and MTHFR
23 Replies
hopeful2820 - May 9

Hi! I have been diagnosed with both pcos and the clotting disorder MTHFR. Does anyone else have both of these disorders? They are both very confusing to me. They both also cause msc. I am really nervous about ttc again. Any info on these disorders would be greatlyappreciated.
Tanya

 

MTHFR and pregnancy - May 11

Hi, I first want to say that I am so sorry for your loss. I do know a few important things about MTHFR but don't know what pcos is? Can you tell me about it? What I know about MTHFR is number one Doctors don't know as much as I wish they did about this disease and you really should do as much research about it on your own and don't depend on them (so many doctors are still learning about it). MTHFR can cause miscariage (in my case 3 still born babies whom were all perfectly healthy). It can also cause cleff palate and spinal bifada, this is why it is so important to take extra B vitamins (B12 and B6) and extra folic acid which should be given to you by prescription. Many people who are diagnosed are told to take baby asperin (which should be taken daily even if your not pregnant because MTHFR puts you at high risk for heart disease). I'm not sure if you are a carrier of the gene or if your homocygot which means you have both genes that are bad and you have the disease. In a support group that I had joined many of the women who were just carriers of the mutation (just one bad gene) are put on the baby aspirin but the ones who are homcygot are told to take lovenox or heperin (blood thinning medication that is givin by injection while you are pregnant). If you are homocygot I would take the injections because I've seen/experienced to many losses on just the baby asperin. Keep in mind that a loss can still occur even when on the lovenix due to other reasons other than MTHFR. There are some risks but I personally consider them minor and think they are worth it if it will help me carry another baby full term. I hope this helps a little and again urge you to do as much research as possible and don't solely depend on a doctors word regarding MTHFR because when it comes to pregnancy and this disease they are still collecting data. Oh, and one more important thing I'm learning that even if your homocystiene levels and thrombophelia levels come back normal you can still have complications due to MTHFR during pregnancy.

 

Mahogany Heart - October 24

Polycystic Ovary Syndrome (PCOS)

Topic Overview


What is polycystic ovary syndrome (PCOS)?
Polycystic ovary syndrome is a hormone imbalance that interferes with normal ovulation. Women with PCOS do not have normal, regular menstrual cycles. This hormonal imbalance also affects other body systems, such as the metabolic and cardiovascular systems.

Most women with PCOS will have numerous small cysts (less than the size of a pea) on their ovaries at some time. However, some women with PCOS do not have polycystic ovaries but have other symptoms of the syndrome.

What causes PCOS?
The cause of PCOS is not fully understood, but genetics may be a factor. You have an increased risk of PCOS if you have a family history of PCOS. If you have the syndrome, your sisters and daughters have a 50% chance of developing PCOS. You may also have an increased risk of PCOS if you have a family history of type 2 diabetes.

 

HeatherMac - October 25


Hopeful -

I just wanted to tell you that I have PCOS, MTHFR and Stage 4 Endometriosis...and I have had a wonderful pregnancy!!

HOWEVER, I am on nearly 15 pills a day just to prevent any problems the MTHFR would have caused (miscarriage, cleft pallette, spina bifida, etc.), including two blood thinning injections each day. I'm also on meds to help with actually getting pregnant since the PCOS can interfere with that.

Yes, it is very difficult to get pregnant with all of these issues, but know that it is NOT impossible to get pregnant AND have a healthy pregnancy and baby!! There is a doctor in Cincinnati, Ohio who is doing groundbreaking work with BOTH the MTHFR issues as well as PCOS. He has a website:

http://www.jewishhospitalcin
cinnati.com/cholesterol/index.html

Th
e
man is a genius and has helped THOUSANDS of women all over the globe to get pregnant, stay pregnant AND go on to have healthy babies!!

So, the key is to research as much as possible, but also to get the help you need from anywhere you can get it. This doctor may be able to refer you to a doctor in your area if you're not near Cincinnati, or don't want to correspond with him and his associates via e-mail.

Let me know if I can help - just remember...it IS possible!! Keep the faith!!


HeatherMac

 

asholee - November 25

Hi all, I am new to this message board stuff, but I found yall in my search for info on ovulex, so maybe I found you all for a reason, huh? Well, let me tell you a little bit about my story, shall I? My name is ashley, and my husband and I live in texas. We have been married for going on three years. I'm only 23, and we have been trying to get preg since before we even got married. I knew when I was younger that I would have problems, because I never really had regular periods. All my friends would have one every month, but not me.... I had one maybe every three. I thought it was a blessing, boy, was I wrong. I do not have health insurance. My husband and I own our own karaoke company, and while it pays well, it does not have insurance. I cannot find anything that will cover me for anything other than discounts at going to the dr... any info on that would be great too. Anyways... I went to the dr for my first ever pap about three yrs ago and she said from all of my symptoms that i had pcos. they ran tests and all that. so she referred me to a fertility specialist. he was just a jerk! I left there bawling. I weigh approx. 220 lbs. and while that is not an ideal weight i dont see that it is the end of the world. my sister in law has three and one more on the way and she is twice my size, ya know? so that i where im at now. im too overweight, and have no insurance and want a baby more than anything. we are ready for that. we have the three bedroom house and the suv, and the nieces and nephew practice. So... I found ovulex, and against everyones better judgement, i am going to try it. anyone else trying it? please, please, let me know if you have anything that will help. thanks to all yall. i enjoyed finding you all.... i wish you all the best

 

HeatherMac - November 25


Asholee,

My advice to you is seek out another fertility specialist...it's not a good idea to self medicate with this kind of thing...there's a lot of monitoring that goes on to protect you.

Our insurance didn't cover anything. Most insurance companies won't cover anything fertility related - they'll cover diagnostics like blood tests and ultrasounds and stuff like that - but aftr that, you're on your own.

It's a crappy choice, I know, but you need profssional help with fertility and I can tell you - it's worth every penny. My husband and I could not afford IVF so we knew we were on a rather abbreviated list of options...but we took full advantage of our options and made the choice and today have a lovely little boy that is truly a miracle.

There are more doctors out there, so find one you like and one that is willing to help you. Most docs are willing to help you when they know you're on limited budgets...so find one you like and you will be tremendously grateful.

Best of luck to you - and CONGRATULATIONS on starting your journey early in life - you will be richly rewarded!!


HeatherMac

 

asholee - November 26

Hi HeatherMac, thanks for the reply. Ovulex is something that I found on the internet, but it isn't prescription... it's like, herbal, it's all natrual. You still think I should not take it without a doctor? I mean, it's like taking a vitamin or something. I'm not taking clomid or anything. Just curious. My mom is against it because she says nothing like that will work, but she is very negative. And my husband just thinks it might get in the way for when we go to the doctor. Anyways, just wondering... what you thought knowing that it isnt prescription or anything like that. Thanks, Ash

 

HeatherMac - November 27


Ash,

I think herbal supplements are oftentimes not recognized as powerful medications -- and they are -- so you should always take them with some reservation and care...especially if you are on ANY prescription medication of any kind. Many prescription meds are NOT meant to be taken with herbal supplements...so I would just take some common sense precautions there.

As far as the Ovulex goes, I honestly think you've nothing to lose if you feel strongly about the supplement. Find out what's in the Ovulex and research what each of these herbs do - there are a lot of good sites on the internet that will tell you about herbs, their benefits and any possible side effects.

However, again, I truly think it would be a good idea to see a reproductive endocrinologist to make sure you're on the right track...you don't want to end up like me - nearly too late to get any kind of help whatsoever. Get some answers while you're young - problems are much harder to fix when you're older.

Best of luck to you on your journey. Keep coming back to the site - there are so many women here with such great experience and strength that you're sure to find the support you need to get through this journey.


HeatherMac

 

Suzanne - December 31

Hi Everyone, I was diagnosed with PCOS about 7yrs ago and thank God for the Modern Miracle of Technology. What Dr.'s didn't know then they are now making up for rapidly. I am now 36 and trying for my first child. I have just recently started taking a Fertility drug called Gonal-F which helps a woman with PCOS. What this does is it matures the Folicles and raises your estradoil levels once this happens you then take a shot of ovadril which stimulates ovulation. Hopefully at that point pregnancy will be achieved.I wish all you ladies out here the best of luck It has been a long road for me but I am still hanging in there. Also a few pointers with PCOS cut out all of your caffeine, eat healthy and if over weight try your best to drop weight. Trust me I know very hard to do ,but it can be done.

 

HeatherMac - December 31


Suzanne,

So right!! The caffeine makes such a difference - great point!! I'm thrilled for you and your discovery of Gonal-F and wish you tons and tons of baby dust!! Hang in there - it IS a very long road...one I'm sorry any of us has to travel...but you have hope with good drugs and good docs and I wish you - and EVERYONE on this site - the best baby wishes!!


HeatherMac

 

kathy - January 13

Hi All,

I am new on this site. I have been trying to get pregnant for 3 years. We did the blood test, laparascopy, clomid etc...but with no success. We don't know what's wrong with us. We live in Cincinnati. Do you know any good fertility doctor in Cincinnati?

Thanks

 

HeatherMac - January 13

Kathy,

I live in Cincinnati, as well!! Welcome!! You'll find great support here!!

There are two FANTASTIC doctors in Cincinnati I would suggest for you. Firstly, I would suggest Dr. Neo Chin. He is a revolutionary in the field of infertility. However, he is now located in Fairfield and not in Montgomery any more. Secondly, I would suggest Dr. Glen Hoffman with Bethesda Fertility @ Bethesda North Hospital. Wonderful man, willing to work through EVERY problem before resorting to expensive and unnecessary tests and procedures. I've had friends see another well-known clinic in Cincinnati who tried one IUI and told her she would have to have several IVF procedures - and the could finance her with their handy finance office. HELLO??? Can you say RIP OFF???

So, the two docs I told you about - both Chin and Hoffman - will NOT rip you off and do everything in their power to get you a happy and healthy term pregnancy.

That is the ONE factor I would check when investigating RE docs...check their LIVE BIRTH rates...not just their pregnancy rates. The rip off clinic I told you about had REALLY HIGH pregnancy rates and REALLY LOW live birth rates. Both Drs. Chin and Hoffman have excellent live birth rates and are just tremendous doctors with whom I would trust my life.

Let me know if you have other questions - I'm glad to help since we're in the same area.

Best of luck to you and LOADS of baby dust!!


HeatherMac

 

Kathy - January 19

Hi Heather,

Thanks for the advice. I greatly appreciated. Growing up, you never know that you will encounter this infertility problem. My mom made it sounds to me as if it is so easy to get pregnant. I guess she was just trying to educate me to be careful with boys :)

ANyway, again thanks for the info. I have called Dr. Neo Chin to get some info. Do you know anything about Dr. Jennifer Thie?

one more thing, where did you check their records as the number of live birth etc....

THanks so much,
Kathy

 

HeatherMac - January 19


Kathy,

Yeah, I guess it's good to be afraid of the boys and their dirty minds. Us innocent little girls would never think of such things!! ;)

Good for you - I wish you the best in your search!! I think you'll like Dr. Chin.

Dr. Thie is FANTASTIC!! She is in with the group that Dr. Hoffman is with - Bethesda Fertility. She is a great woman, but not on my insurance so I saw Dr. Hoffman. Their website is:

http://www.bethesdafe
rtility.com/content/

I've
heard such GREAT things about Dr. Thie...I think you would be happy with her. They're great there - they work WITH YOU and they don't try to push unnecessary tests and procedures on you. I had great success with their practice and a happy little baby to prove it!

As far as Live Birth Rates, that is always something I asked an RE when in the interview process. I made clear that I wanted their Live Birth Rates rather than their Pregnancy Rates...though I found it helpful to have both. You can usually find all the good info on the internet, but if you can't, be sure to ask the doctor themselves. If they don't answer or get vague with you, I would think twice about working with them.

If you want, send me a private message and I'll be more than happy to give you my telephone number or e-mail address if you'd like to talk further. At the top of this page where it says HOME HELP SEARCH PROFILE NOTIFICATION LOGOUT...click on search and type HeatherMac in the "Search for" box...then once the profile comes up, at the bottom of that page, click send this memeber a private message. WHEW!! It sounds like a lot, but it isn't. That way, we can talk if you like...or at least correspond more directly.

Hopefully this is helpful for you - and I'll hopefully hear from you soon!!

Again, whatever I can do to help - I'm glad to do.

BABY DUST TO YOU!!


HeatherMac

 

felecia - March 1

Im 26 with pcos I have been ttc for 3years with no luck.Ive taken clomid I ovulated but never got pregnant.Im taking metformen now and fertilaid.Ive been taking fertilaid for about two weeks Im going to give it 3 monthes if it does not work Im going to try ovulex.If anyone has any success stories please let me know.I have not had a period with out medcine in about 1 year.But last month I had one on my own after losing 15 pounds. please email me at [email protected]

 

Carey - March 22

Hello- I have PCOS and I am homozygous for the MTHFR mutation, as well (with elevated homocysteine levels). Does anyone know the therapeutic dosage of daily folic acid and B vitamins recommended?

 

Jeefer Mac - April 13

Felecia, I would love to stay in contact with you so you can tell me how the FertilAid is working. I too have started it b/c my husband and I have been TTC for 3 yrs now and I too have PCOS. Has the FertilAid given you regular periods yet and helped you ovulate? I see you posted over a month ago so I'm hoping you come back and see my reply. Please answer whenever you have the chance. I can't wait to find out how it's working for you! Good luck :)

 

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