Wednesday, June 29, 2005

The growing Hypothalamic Amenorrhea Club...

I started this blog when I was diagnosed with HA, and couldn't find any message boards, blogs, or other place where I could talk to people in the same boat - find out what had or hadn't worked for them, why my RE was telling me certain things, if their's was saying the same. For a long time, there was just me, and maybe Queenie (who I don't think was diagnosed as HA, but wasn't getting regular visits from C. Bitch). In the last couple of weeks, a few other potential HA gals have found my blog, and tonight I came across a message board with over 500 posts (I'm currently reading through, on around #120 or so...). So I started my "HA posse" links section.

I have already come across a post on the board where someone said she was on Repronex for 20 days, so that's given me some peace of mind. I've been so worried that they would just tell me to screw this cycle and give up. And whether that would mean that we're done with this avenue (injectibles / IUI). Sometimes I think that being a scientist is a really bad thing in this arena because I know too much about things that could potentially happen. The meds aren't working? I must be making neutralizing antibodies. So the FSH will never work, and I've totally screwed myself because I can't ovulate, and now can't take gonadotropins so no IUI OR IVF. Despite the fact that there is no published paper even remotely suggesting that. Well, except in baboons taking human gonadotropins. I'm such a dork.


AltMama said...

Ah, niko, you are brilliant for finding that message board. I never would have gotten there.

Do you know where there's a good chart of hormone test numbers? I get results back tomorrow, and realize I will have no frame of reference for the numbers.

S. said...

Thanks for posting the site! It would've taken me a while to find it. I'm anxious to check it out. Hopefully work will calm down enough that I can sneak a peak at it this morning.

Emma B. said...

AltMama: try

Great, Nico, just what I need -- ANOTHER online resource to follow obsessively ;)

Fitgrl said...


I can't believe that I found this site and hope that some of you can help me!! I am 31 and I have been diagnosed with HA due to low bodyfat after a multitude of tests.. I avidly weight train and have competed in fitness. I want to know if anyone has been successful in getting their cycle back on their own and if so, if they have any advice on how to do so!! My husband says that he is going to chain me to the couch and feed me bacon double cheeseburgers..

But seriously - I love to train and I eat fairly lowfat so this is tough for me!! Of course, worthwhile with the end result of a baby in mind... My Dr is recommending hormone therapy and I know that there are a lot of instances of multiples etc... If I can do this on my own I would like to!!

Any advice that you may have would be so greatly appreciated!!


Nico said...

Hey Fitgrl,

You didn't leave an email address, and don't seem to have a blog yet, so I hope you see this. I tried gaining weight and decreasing my exercise by about 50%... I did get my period, but even so, no sign of any real activity (i.e. growing follicle). That was after about 9 months off the pill. If you want to try it on your own, the only other suggestion I have is to try acupuncture, I have heard of that working for people. Although I don't know anyone specifically with HA that's tried it, but I definitely think it's worth a shot. If I could do the last year over again, I would have started that right after going off the pill... and if this cycle doesn't work, I'm going to try it.

Fitgrl said...

Hi Nico,

Thanks for that. I am all new to blogging so should I set up my own blog?? I am checking this site for feedback in case anyone else has advice!!

So even after getting your cycle back you still weren't ovulating??? Did you try Clomid after it came back???

When you cut your training back by 50% did you also increase your caloric intake?? Did it take you 9 months after cutting back the training??

Thanks for your help Nico - sorry for all of the questions!

Anonymous said...

I've also had no periods for 3 years, I'm going to scour this site, thank so much

kilsby said...

i've not had a period for 3 yrs. I really think it's because I've had bulimia and been a runner. I've not been running for 3 months now and eating more, i've put on 5lbs. How long does it typically take to regain periods?

thanks so much for this site!

Nico said...

Hi Kilsby,

A friend of mine lost her period from running / losing weight, I think she got it back reasonably quickly after she stopped restricting her calories so much. You can check out her blog at I think for me it's a longer term problem than just the eating / exercising - bit if you were pretty regular before you starting running etc. you should be back to normal soon. I've read that 16-18% body fat is about where you lose your period.

Email me if you want to chat more.