Saturday, July 25, 2009

Hypothalamic Amenorrhea

Last night I did a vanity Google search of “Runblondie26” to see what would pop-up. Interestingly enough I found my name on this list. It’s the Hypothalamic Amenorrhea “graduates list”, tracking the success of women who were once members of the Hypothalamic Amenorrhea support forum on FertileThoughts.com. It’s being maintained by Nico, the moderator of the forum and a former HA’er herself. If it weren’t for her, I probably would have faced a more difficult treatment path, and it may not have ended with the precious daughter I have today. She’s provided a great service by sharing her story and spreading the word about the treatment of HA.

After being misdiagnosed by a series of doctors for over a year, I was finally given a correct diagnosis of HA in February 2008. First, my doctor recommend adding more fat to my diet (“Use a pat of butter at every meal and eat real ice cream” were her words), and to increase my body fat from about 14% to 22-23%, which is considered the ideal range for trying to conceive. Also, I’d need to trim down my exercise routine. Over the next 3 months I gained almost 15 pounds and reduced my running from 50-60 miles a week to about 20. Still no signs of my cycle returning.

Traditionally, HA is treated with a mix of diet and lifestyle changes. Sometimes that isn’t enough if a woman has been amenorrheic for a long period of time (almost 8 years in my case, I only got AF by taking triphasic birth control pills). From there, the next step is injectible hormonal drugs (GnRH). Not only is it far more invasive, it is also a lot more $$$ to do a cycle of injectible fertility drugs.

Fortunately for me, my RE (reproductive endocrinologist) was progressive in seeking new treatments and was willing to try an alternative route. It was a copy of Nico's blog entry on the use of Clomid to treat HA, that my doctor handed me as she explained what my treatment would entail. In her blog, Nico cited a small yet very important study in Italy where doctors were able to restore the cycles of amenorrheic women without weight or lifestyle changes. You can read more about the study here, but in short, they gave women 50mg of clomid CD 3-7 followed by 100mg CD 8-12.

$9 worth of clomid did the trick. I developed OHSS during my cycle on the extended clomid protocol and was not able to get pregnant. I also gained 5 more pounds (clomid does some evil stuff to your appetite) which brought my body fat to about 22%. These factors combined got my body back on track and we were able to conceive the following month.

To prevent relapse back into HA, I have to be very conscientious to take in an adequate amount of calories to offset the amount I’m burning. I was never restrictive with my eating (love me some Ghirardelli's), but I should have been eating more than I was to keep up with my activity level. Also, I must maintain a higher level of body fat than I might feel comfortable with, and get at least 30% of my daily calories from healthy fats.

I’m happy to share my story with anyone who may be dealing with HA. I want to also offer thanks again to Nico. Your list is one I’m happy to be on!

8 comments:

  1. Wow, what a lot to deal with. I'm full of admiration for you, and so glad you have a beautiful daughter to show for all of it! x

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  2. Thank you :) As you understand it's a hard road. It took a long time to get to the clomid phase, but I feel blessed that's as far as we had to go.

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  3. Thank you for sharing your story. It puts a smile on my face to hear outcomes such as yours. I am at the beginning of what I feel like will be a long road. I just started my clomid, however, just the regular dose of 50mg for 5 days. I am curious did it take 1 round of the 50mg/100mg version to work for you?

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  4. I had to be on the long dose of it. Typically people with HA won't respond to a standard dose of clomid. Are you being monitored throughout your clomid cycle with bloodwork and ultrasounds?

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  5. I am but being monitored but nothing is happening at this point. My Progesterone level was .08 on day 21 which I think is along way from ovulating. My doc wants me to take another round of the regular dose and then he may consider upping it. I have gained enough weight over the past several months but just never know if it is enough. I am now 5'4 and 112. I also am a big runner and cyclist so it really helps to read other successful stories from people in my shoes.

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  6. I really like your blog and i really appreciate the excellent quality content you are posting here for free for your online readers. thanks peace dale tuck

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  7. I am but being monitored but nothing is happening at this point. My Progesterone level was .08 on day 21 which I think is along way from ovulating. My doc wants me to take another round of the regular dose and then he may consider upping it. I have gained enough weight over the past several months but just never know if it is enough. I am now 5'4 and 112. I also am a big runner and cyclist so it really helps to read other successful stories from people in my shoes.

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  8. I just found this post, googling "hypothalamic amenorrhea extended clomid protocol". Love it!! Thanks for the shout-outs too!! How are you??

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