PCOS & Severe Insulin Resistance-the meds quit have quit working, now what...?

Question

I was diagnosed with Severe Insulin Resistance and PCOS in the beginning of October 06. At that time, I had not had a period in over a year and a half. I had seen three doctors over that time and was told by all of them that it was stress, and tha I needed to relax and it would be ok! Eventually, I was tired of being told that and was concerned, because my husband and I were ready to try to have a baby, so I found a specialist. Tests were run and a diagnosis was made. I finally had my answer! I also have high blood pressure and mitral valve prolapse. I was put on Glucophage/Metformin 500mg 3x a day (for the Insulin problems), I take Labetalol 100mg 2x day (for the blood pressure), and I take estrogen pills for the first 10 days each month (in order to cause a period). when I started the estrogen, I was to take it through Feb 07, then stop, to see if it had kicked my ovaries back into functioning on their own. This was my last month to take them and it seems that it has stopped workin

and NO I'm not pregnant! I am devastated because what now, the medicine doesn't seem to be helping anymore! I have changed EVERYTHING about my lifestyle to try and help things along, and have taken my meds, so now what! Up til I started taking the meds back in Oct, my ovaries/uterus had no function, they had shut down. The doctors told me and I read in research that if they do not start working and continue to work, they may want a hysterectomy, because ogans that sit and aren't working are a breeding ground for cancer.
I'm 25 years old! I'm so lost! I have also read that upping the hormones could cause problems for my heart? (does anyone know the validity to that?)
If you can't tell, I'm devasted and so lost! My doctor is in the process of retiring, so I'm lost even more! Please help, anyone have a similar situation?

In case it wasn't clear, I have had no period this month, even though I was on the meds to cause one! Help!!!!

Answer 1

Sorry to hear about everything you are going through. I, too have PCOS and it's not fun. Sounds like you are on the right track. Getting a diagnosis and on metformin is your best bet at getting a regular period and eventually conceiving. Sounds like you are also aware of the fact that PCOS is actually caused by the insulin resistance. A few thoughts I had:

1. You may need a higher dose of metformin. The recommended dose for PCOS is 1500-2550mg per day. You are on the lowest dose. I would beg your doctor (if needed) to up you to 2000mg per day. Many women dont respond until they hit that 2k. Also, if you are on the extended release version, you might want to try to switch to the regular kind (I've heard it works better, although I dont think there is any official news on this). Sadly, many doctors are not well-informed about PCOS and metformin. Even my RE (who is suppose to be one of the best) was hesitant. I brought in TONS of info and he eventually agreed. It worked. I started noticing changes in all my symptoms.

2. (this is the one I hate hearing, but sadly..it's the truth). It could be (and I dont know since you didnt specify)...that your diet is working against the metformin. It is very important to eat a low carb diet and exercise (dont know how this is effected by your MVP and blood pressure issues-check with your doctor). There are TONS books about dieting and PCOS (I like the Insulin Resistance Diet). Here's the links at amazon for that one and another that is pretty good too:
http://www.amazon.com/o/asin/0809224275/...
http://www.amazon.com/o/asin/0007131844/...

3. It can take up to 6 months on the right dose of metformin before it starts working. Not getting a period for a few months is not really harmful (they say to have at least 4 cycles a year to reduce the risks of endometrial cancer). However, if you are ttc...then you of course want to get your cycle.

4. Not sure what specialist you are seeing, but I recommend a reproductive endocrinologist. They are the most knowledgeable about PCOS and any fertility treatments you might want to try. Dont listen to those that say to sit back and relax. That works for some women when it comes to ttc...but for women with PCOS...that does nothing (as you know).

5. A hysterectomy wont change the PCOS issue (at least not by much). Since PCOS is about insulin resistance and hormones, the hysterectomy wont help the PCOS. Of course..you wont get uterine cancer...but that is only one of the issues.

My last thought is to visit http://messageboards.ivillage.com/iv-bhpcos It's a great message board where you can ask any questions or just go there for support or to vent. I highly recommend it.

I also recommend a couple web sites:
http://pcos.itgo.com/
http://www.inciid.org/faq.php?cat=infert...

Good luck and hang in there. I know it's rough...but PCOS is treatable, even though it's not curable.

Answer 2

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Answer 3

If you're still struggling with the insulin resistance, there are quite a few women with PCOS who have started taking a medication called Byetta in conjunction with their metformin. I believe using it for PCOS is still an off label use (as in, it's not officially approved by the FDA for use for PCOS, but it's working for some.) Byetta is approved by the FDA to use for type 2 diabetes, so it's not like it's an unapproved drug. Check the message boards at soulcysters.com for more information about Byetta. (I'm not on it, I mentioned it to my doctor when I saw him about six weeks ago and he said that my numbers were too good to consider Byetta now.)

One other thing you might be interested in-the New England Journal of Medicine published a study this month about Clomid vs. Metformin in bringing on ovulation in anovulatory women with PCOS and apparently clomid is better at bringing on ovulation. (I've read this before, but the prevailing theory seems to involve using metformin to allow women to take lower doses of clomid.)

Are you seeing a reproductive endocrinologist yet? If not, he or she may be better able to guide you through this process than an ob/gyn.

Answer 4

Here is a great bulletin board/community for you to get answers from real women who are TTC with PCOS : http://www3.fertilethoughts.com/forums/forumdisplay.php?f=38

I have gone to this site for two years for support while doing IVF, and these women are so smart and helpful. Check out the sticky posts at the top for more general info, or feel free to post your question and I know you will get some good answers. You do need to register, but it is free and they do not bug you with emails, plus it keeps the troublemakers away.

I know that PCOS can make TTC miserable, but with the technology there is today, there is hope. Good luck!