rachael07

Hi All -

This is my first time posting. I thought I'd share some of my story.

I got my period when I was 14 and went on BCPs when I was 15. After 9 years on the pill, I pretty much stopped having a withdrawal bleed - just some light spotting for a few days. I went off the pill in Nov '08, and I never got my period.

In Jan '09, I went to my gyn, and she had the typical labs done. They came back showing normal estrogen, FSH 1 and LH 3. With the 3:1 ratio, she diagnosed me with PCOS. My fasting glucose was OK, and I had high LDL (159) with good HDL (89) and fine triglycerides. Given my healthy diet, low BMI and good exercise habits, all of this was a shock. She gave me progesterone, and I had a withdrawal bleed (not just spotting either).

My gyn did not want to do a more thorough evaluation (ultrasound, androgens, glucose tolerance test, etc). She would not consider metformin because I "don't have a beard" and my FG was fine. I am ttc, so her recommendation was clomid... unmonitored clomid.

I wandered through heartbreak for weeks (months). I modified my diet drastically. I bought boxes of OPKs and a saliva ferning monitor. I put cinnamon in everything I ate. I tracked BBT and charted everything I could. Nothing helped. I went on Clomid (50mg) at the end of March, nothing.

I was getting very frustrated with my treatment, at that point. Being lean, I knew I wasn't likely to respond to clomid anyway, but she didn't want to consider my glucose issues.

To prevent this story from getting much longer, I'll cut to the chase. I began being treated by a doctor who turned out to be one of the experts in the PCOS field. Wow, I can't even begin to tell you the difference. One look at my labs and he figured out what was wrong (not just PCOS).

A few conclusions

1) All lean PCOS patients should be considered at risk for type II diabetes and should undergo GTT every few years

2) I have hypothalamic amenorrhea (HA) on top of my PCOS (reflected by the low FSH level). This is not the norm, but it happens.

3) HA and PCOS switch back and forth. My hypothalamus shuts down due to stress / low calories. When it clicks back on, for whatever reason, I started releasing LH, but my ovaries are not sensitive to the stimulation and so nothing happens

4) Patients with HA and PCOS will not respond to clomid. He really believes it is a waste of time. I'm probably going to move straight to injectables.

I wanted to share this story in case there is anyone out there who also has low FSH. From what I know now, I suspect this could be the case with many lean PCOSers, especially as we try to follow low carb recommendations. My gyn definitely did not catch this issue. My new doctor is double checking this diagnosis by having me redo all of my labs, but he feels fairly sure that the low FSH reflects hypothalamic supression. He says this can happen even though I get a withdrawal bleed from the prog challenge test. He said that HA sort of switches on and off, depending on how stressed I am and what I am eating. This makes sense to me, given that I pretty much stopped having periods while on the pill, which suggests that my estrogen is supressed. Again, my gyn never would have caught this subtlety about low FSH in my labs.

I took my 2 hour GTT this morning and had blood drawn for all new labs (16 vials in all - UGH). I will have an ultrasound later this week. I am so glad to finally have a proper diagnosis.

I've been lurking on this board for a while now. Thank you to everyone who shares their stories here.