Hypothalamic Amenorrhea Cure???

I started this blog over two years ago, hoping to connect with other women with hypothalamic amenorrhea, hoping to get advice when I was going through treatment, and subsequently, to help those who are struggling today.

I have not been keeping up on the research of late. But, when I was looking for information for a woman I met through the hypothalamic amenorrhea bulletin board at fertilethoughts about whether there was any advantage to using Femara (letrozole) over Clomid, I came across an abstract that I think is quite groundbreaking.

The article, “New protocol of clomiphene citrate treatment in women with hypothalamic amenorrhea”, offers the hope of using Clomid not just for ovulation induction, but to actually restore normal menstrual cycles! I actually purchased the article so I could read the details of the study they performed, to see if I agreed with the conclusions they drew in their abstract, and also whether Clomid was the only treatment used, or if there was concomitant decrease in exercise or increase in weight.

The only drawback of the study was its size – only eight women were treated. However, all eight resumed cycling, and were still cycling six months later! I think that this treatment regimen is incredibly promising for those still struggling.

The study consisted of eight women, five of whom had hypothalamic amenorrhea from excessive exercise, the other three from restrictive eating patterns. (Aside – HA does seem to be due to an energy imbalance – either overexercising, undereating, or a combination of the two. I have been in contact with 25+ other women with HA, almost all of whom (including me) fit this profile). The BMIs of the women in the study were 17.6 to 19.5 – underweight or very low normal weight. Hormone levels were meauserd at the beginning of the study, and were classic HA – low side of normal for e2 (18-25), FSH (2.9+/-0.4), LH(2.3+/-0.3) and progesterone (0.18+/-.2). The age profile is younger than most of us who are TTC – 17-22.

The treatment regimen was 50mg of clomid for five days, followed by five days at 100mg. Ovulation was then assessed by u/s and progesterone mid-luteal phase (with a fairly stringent requirement of >25nmol). Of the eight patients, six of them ovulated and got their period after just one cycle! They subsequently took 100 mg Clomid CD3-7 on the next two cycles. The two women who did not ovulate after the first cycle repeated the initial regiment, and both did ovulate after that.

After the three months on Clomid, all eight women resumed cycling on their own, with no additional medication!!! In addition, there was no change in eating or exercising habits – the deficit in energy caused by overexercising and / or undereating seems to be very strongly correlated with hypothalamic amenorrhea.

For anyone trying to conceive, I would NOT recommend not changing the eating/exercise habits that led to HA – I think it is extremely important that during pregnancy one is not operating at an energy deficit. You would never starve your child after he was born; it is no different to starve them inside the womb. However, I think that particularly for people whose insurance does not cover injectibles, this new regimen is well worth trying.

Three of the women on the fertilethoughts HA board have now tried this regimen, with similar success (although one ovulated on the first cycle and repeated the 10 day regimen with no ovulation the second cycle). Two others have tried a longer clomid protocol than the standard five days, although not quite this regimen, one successful and one not. It seems that it is well worth giving this new regimen a shot before pursuing more aggressive treatment like injectibles. And so far one BFP!

In short, the protocol was as follows:
Bleed induced through bcp (not necessary; two of the women on the FT board did not get a bleed first)
50 mg Clomid CD 3 - 7
100 mg Clomid CD 8 - 12
u/s to check for follicles

I hope that other people in the HA boat find this protocol, and start pushing it with their RE's. The traditional thought is that Clomid does *not* work for women with HA because of the low baseline estrogen levels. But this seems to be different!