Lean PCOS, IR, FSH, Hypothalamic Amenorrhea, and a Doc who knows something

rachael07 · 05-09-2009, 02:59 PM

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.

freckles2 · 05-09-2009, 06:49 PM

This was very helpful -- thank you! Until now, I'd never considered the possibility that I have both PCOS and hypothalamic amenorrhea. Doctors have vacillated between the two explanations for the past three years and can't seem to decide which is the cause of my oligomenorrhea (with periods of amenorhea in between) and infertility. My estrogen is chronically low, and even when I upped my BMI to the 'healthy' range, my period and fertility problems persisted and my previously normal LH level tripled -- giving me the hallmark 3:1 ratio. For the past month, I've been working to replace the grains in my diet with more beans, fish and healthy fats. I do feel much better, and my carb cravings are gone, but I'm on day 40 with no period.

Quick question about Clomid: Did you try it, and if so did you ovulate? I ovulated each time I took it (I tried it for four months) but did not get pregnant. My doctor is now recommending IUI with Clomid only, no injectables. Do you think this is a waste of time and effort?

How about body weight? What does your doctor recommend? I'm terrified to gain weight, despite my doctors' recommendation, because of the PCOS.

Good luck to you!

rachael07 · 05-09-2009, 08:02 PM

Hi Freckles,

Wow, I am glad to hear that this information might help you figure things out.

I was only on clomid for one cycle (50mg), and I did not ovulate. I haven't ovulated since going off the pill, and I am pretty sure I haven't ever, or it has been very infrequent. I've only been off the pill for about 2-3 years of my menstruating life, and my periods have never come at regular intervals.

Goodness, we sound similar. I did the exact same thing with my diet, but it didn't help much. My diet was pretty good before I cut down on carbs, but at the same time, I feel much better now that I've cut all pasta/bread out. I am starting to realize that my moodiness and periods of intense exhaustion are in fact blood sugar related.

I asked my doctor about diet, and he gave the typical recommendation of making sure I have lots of lean protein, healthy fat and fiber in my diet. He suggested I speak with the dietician in their clinic who specializes in PCOS -- I'll let you know if I hear anything from that person. I did not specifically ask him whether I should gain weight in order to ovulate. I'm 5'4" 118lb, so i am light but not super skinny. I am going to wager a guess that my hypothalamic issues stem from stress, although I bet the lack of body fat compounds them. More body fat = more estrogen, and I don't have much estrogen.

My doctor strongly cautioned me to regulate my weight in the future. He said the fact that the only reason I don't have full blown IR is only because I have both kept my weight at a good level, and he thought if I ever gained weight I would be likely to see these symptoms increase exponentially. Whether that means "don't gain any weight ever, even if it's 5lbs", or "don't gain 20lbs in a month", I'm not sure.

From what I understand of HA, it results from chronic energy deficit. I think this is what makes the PCOS/HA combination so hard to treat. You turn off one and the other flips on.

Also, are you sure you ovulated? I get + or near + on OPKs every 5-10 days, though once I started tracking my BBT, I realized I wasn't ovulating.

I couldn't say whether it would be a waste or not. My doctor thought it would be a waste with me, but then again, I didn't/don't ovulate. The IUI makes sense with your low estrogen (get past the pesky cervix!), so perhaps since you are ovulating, it would be the best shot for you. The injectables come with very high rate of multiples (25%!!), so I think if I had my choice I'd want to do things with clomid.

Best wishes and I hope that the IUI works

PuggyMama · 05-09-2009, 09:26 PM

Thanks for the info - appreciate you taking the time to share your story. I am also lean PCOS and doctors don't seem interested in really understanding the root cause of my PCSO...just take the clomid and shut up. I'm hoping this is because all of my other hormone levels are fine and its just my testosterone. Waiting for AF to start first round of clomid this month. I've never been so desperate for AF to show up so we can get started already!

JMac30 · 05-10-2009, 02:50 AM

Thanks for sharing your story! How wonderful you were able to find a doctor who would investigate your case a little bit further and find some better solutions for you!

I read your story with great interest. I am not sure if it applies to me or not, but it's definitely something I will ask my doctor about. I have an LH:FSH ratio of 2:1, am a healthy weight (BMI 23), and my main symptom is just infrequent ovulation/periods. I had a missed miscarriage and d&c in January and havent had a period since. I took progesterone to bring on a withdrawal bleed a few weeks ago and all it gave me was a day and a half of light spotting. I go back for a follow up with my OB this Thursday to ask him why my withdrawal bleed was SO insignificant.

Thanks again for sharing! The more people, especially thin cysters, who share their experiences, maybe the more we can all find out about our own particular cases.

mamcduff28 · 09-05-2009, 09:53 PM

WOW, this is me too! I was recently diagnosed with this same combination! Im about 5'2&half and weigh about 110-112 lbs. Although, I am a high stress person so I did drop down to about 102 lbs. for a while after we moved to a new city. I got off the pill in Dec. 08 and havent had a period (thats not medically induced) since! For now though, i'm going to skip over the last 9mo of doctor appointments, testing and treatments and tell you that I just had an appt. Fri after taking 5days of Femara.... It did NOTHING! It was so disappointing! I had leave work early because I was so upset! Now they are starting me on injectibles and im super scared! After reading these posts, Im curious how you girl's situations turned out? Are you still dealing with this or are you prego now?