Hypothalamic Amenorrhea

fitgrl · 08-09-2005, 04:32 AM

Looking for anyone who might have some advice!!

I am 31 yrs old, 5’5 inches tall, and approx 125lbs. I have been diagnosed with hypothalamic amenorrhea. I have been off the pill since May of 2004 with no period. I started taking the pill at age 15/16 so had been on it for 15+ yrs. I lost some weight while on the pill at around age 20 (approx 20 lbs) and stayed at approx 120-125 lbs until I competed in a fitness competition 3 yrs ago where I was around 115-118lbs and very lean, probably 10-12% body fat.

I have seen my Dr. who has done all of the appropriate tests including blood work, flushing of my fallopian tubes, and even an MRI to rule our pituitary tumors. I have had a second opinion from a fertility specialist and both doctors diagnose me with the hypothalamic amenorrhea due to low body fat. I have seen a herbalist who has me taking a four things combination (Shu Di Huang, Dang Gui, Bai Shao, and Chuan Xiong) as well as taking Vitex for the last three months (no results from this). I have really eased off the training and have been trying to ‘healthfully’ increase my body fat by taking in extra calories and healthy fat through nuts, olive & flax oil etc... I am up to 125 lbs ( I used to have a 'full' period when on the pill at this weight) and feeling very lazy but still no period.

I have tried the Provera challenge without any result and just recently tried it again at this higher weight. I know that hormone injections and IUI are the next step in my Dr.'s eyes but am wondering if anyone out there has any additional suggestions for doing this on my own??

I so appreciate any feedback that you might have!!

MomZ · 08-09-2005, 06:51 AM

It sounds like you are doing all of the right things, and getting two opinions is great.
When you say you did the provera challenge without a result, what does that mean?
Julie

fitgrl · 08-09-2005, 07:19 AM

Hi Julie,

I mean that the Provera has not given me the 'withdrawal bleed' that I need to take the Clomid.

kilsby · 08-09-2005, 12:14 PM

Fitgrl, I'm in your position too and had a bodyfat of around 14% and didn't have a period for 3 years. I'm currently not running, just doing weight training and max 20 mins cardio at a time and eating LOTS more. It's been 3 months for me and still not ovulating or having a period. Provera didn't work for me either and I had to take Premarin (estrogen) to get a period. The RE told me that Clomid wouldn't work for me and i'm not sure if it would for you either, i'd hate for you to waste your money.

My next step is also injectibles but I'm trying to increase bodyfat (currently 16%), eat really healthy, stay stressfree and only moderate exercise. have you been tested for hormone levels? i've been told i have low estrogen due to this problem and this is why Vitex doesn't work for me as it increases progesterone levels, maybe this is why it did nothing for you? what's your current bodyfat percentage? you might be at the same weight as when you were having cycles but you might have more lean muscle mass now so may need to concentrate on increasing body fat, rather than just weight on the scale.

Good Luck! keep in touch with any updates and I will too.

MomZ · 08-09-2005, 01:27 PM

Ok, thank you for explaining that to me. The first time I took provera I did not get af either. I had to take a second round of it. You might want to mention that to your Dr too.

fitgrl · 08-10-2005, 04:25 AM

Hi Julie,

I have actually tried the Provera three times with no result. My RE has given me repeats to try every 6-8 weeks while I am increasing my bf%.

Now that you have af are you ovulating??

I appreciate your advice!!
Tania

fitgrl · 08-10-2005, 04:41 AM

Kilsby,

Thanks for your feedback as it makes me feel like I am not alone in this!!

I have heard about Premarin - since it gave you af you still can't try the clomid or is your estrogen still too low?? I am going to see a Dr. to try to get the premarin prescribed. I have still been weight training but wonder if that is my problem, not the cardio as we all know that muscle burns more fat... I have been lifting a lot lighter and only 3x a week.. What have you been doing for cardio and how often? I really have a hard time giving it all up! I have definitely increased my bf% as I can really tell on me but probably still a have a ways to go. I need to get my bf% tested.

Even with the injectibles I suspect that you have to be at a certain bf% in order to maintain the pregnancy? I am scared to go this route for fear of ending up with too many babies with my luck!

I did have my hormone levels tested and my estrogen was very low.. I wouldn't mind having it tested again as then I might at least feel like I am making some progress!

I have been e-mailing back and forth with a doctor in Boston who has and is conducting studies on leptin. Have you read anything about leptin & amenorrhea? If you would like me to e-mail the papers to you then give me your e-mail address and I will send them along to you. I am thinking of participating in the study if possible for me.

Anyhow - really looking forward to any more advice that you might have or listening if you just need to chat!

Good luck to you

!
Tania

MomZ · 08-10-2005, 08:33 AM

Hi Tania,
I am very sorry to provera isnt working. Its the only thing that will shed my lining. I do not ovulate at all, only with injects. I am suffering from secondary infertility now as well, and just starting an inject/iui cycle.
I hope you get some more helpful support

Quote:

Originally Posted by fitgrl

Hi Julie,

I have actually tried the Provera three times with no result. My RE has given me repeats to try every 6-8 weeks while I am increasing my bf%.

Now that you have af are you ovulating??

I appreciate your advice!!
Tania

fitgrl · 08-10-2005, 09:01 AM

Hi Julie,

I have actually read that premarin works better for some so might try that... That being said - Kilsby said that her RE said that she won't respond to clomid even if she gets a withdrawal bleed so even if I get it my problems may not be solved!! With the injectibles/IUI - if your uterine lining is really thin do you know if an egg will implant??

How has it been going with the injectibles? Is it hard on you??

Good Luck!! My fingers and toes are crossed for you!

kilsby · 08-10-2005, 01:08 PM

Ftgrl,

yes I was confused about why I couldn't take Clomid after I'd had a period after Premarin but the doc said it won't do anything coz of low estrogen & FSH levels. this is why he wants me to do injectibles which will actually give me the hormones that I'm missing! I'm giving myself till early next year to increase BF and try & get periods back - afterall I had them once!

For training I've been doing full body workouts, lighter weights 3 x weekly and cardio for 25 mins max 4 x weekly on stairclimber & elliptical - I've cut out running altogether.

The funny thing is that my RE and my obgyn have told me that my body fat doesn't look too low - not low enough to stop periods but I think this is due to increased muscle.

I'd love you to send those reports and chat, my email is linda@isatoritech.com

08-09-2005, 04:32 AM	#1 (permalink)
fitgrl Registered User Join Date: Jul 2005 Posts: 964	Hypothalamic Amenorrhea Looking for anyone who might have some advice!! I am 31 yrs old, 5’5 inches tall, and approx 125lbs. I have been diagnosed with hypothalamic amenorrhea. I have been off the pill since May of 2004 with no period. I started taking the pill at age 15/16 so had been on it for 15+ yrs. I lost some weight while on the pill at around age 20 (approx 20 lbs) and stayed at approx 120-125 lbs until I competed in a fitness competition 3 yrs ago where I was around 115-118lbs and very lean, probably 10-12% body fat. I have seen my Dr. who has done all of the appropriate tests including blood work, flushing of my fallopian tubes, and even an MRI to rule our pituitary tumors. I have had a second opinion from a fertility specialist and both doctors diagnose me with the hypothalamic amenorrhea due to low body fat. I have seen a herbalist who has me taking a four things combination (Shu Di Huang, Dang Gui, Bai Shao, and Chuan Xiong) as well as taking Vitex for the last three months (no results from this). I have really eased off the training and have been trying to ‘healthfully’ increase my body fat by taking in extra calories and healthy fat through nuts, olive & flax oil etc... I am up to 125 lbs ( I used to have a 'full' period when on the pill at this weight) and feeling very lazy but still no period. I have tried the Provera challenge without any result and just recently tried it again at this higher weight. I know that hormone injections and IUI are the next step in my Dr.'s eyes but am wondering if anyone out there has any additional suggestions for doing this on my own?? I so appreciate any feedback that you might have!!

08-10-2005, 04:41 AM	#7 (permalink)
fitgrl Registered User Join Date: Jul 2005 Posts: 964	Kilsby, Thanks for your feedback as it makes me feel like I am not alone in this!! I have heard about Premarin - since it gave you af you still can't try the clomid or is your estrogen still too low?? I am going to see a Dr. to try to get the premarin prescribed. I have still been weight training but wonder if that is my problem, not the cardio as we all know that muscle burns more fat... I have been lifting a lot lighter and only 3x a week.. What have you been doing for cardio and how often? I really have a hard time giving it all up! I have definitely increased my bf% as I can really tell on me but probably still a have a ways to go. I need to get my bf% tested. Even with the injectibles I suspect that you have to be at a certain bf% in order to maintain the pregnancy? I am scared to go this route for fear of ending up with too many babies with my luck! I did have my hormone levels tested and my estrogen was very low.. I wouldn't mind having it tested again as then I might at least feel like I am making some progress! I have been e-mailing back and forth with a doctor in Boston who has and is conducting studies on leptin. Have you read anything about leptin & amenorrhea? If you would like me to e-mail the papers to you then give me your e-mail address and I will send them along to you. I am thinking of participating in the study if possible for me. Anyhow - really looking forward to any more advice that you might have or listening if you just need to chat! Good luck to you ! Tania Last edited by fitgrl; 08-10-2005 at 04:43 AM.

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08-09-2005, 06:51 AM	#2 (permalink)
MomZ Board Coordinator Join Date: Jan 2002 Location: New England Posts: 7,646 Blog Entries: 385	It sounds like you are doing all of the right things, and getting two opinions is great. When you say you did the provera challenge without a result, what does that mean? Julie

08-09-2005, 07:19 AM	#3 (permalink)
fitgrl Registered User Join Date: Jul 2005 Posts: 964	Hi Julie, I mean that the Provera has not given me the 'withdrawal bleed' that I need to take the Clomid.

08-09-2005, 12:14 PM	#4 (permalink)
kilsby Registered User Join Date: Jul 2005 Location: Colorado Posts: 416	Fitgrl, I'm in your position too and had a bodyfat of around 14% and didn't have a period for 3 years. I'm currently not running, just doing weight training and max 20 mins cardio at a time and eating LOTS more. It's been 3 months for me and still not ovulating or having a period. Provera didn't work for me either and I had to take Premarin (estrogen) to get a period. The RE told me that Clomid wouldn't work for me and i'm not sure if it would for you either, i'd hate for you to waste your money. My next step is also injectibles but I'm trying to increase bodyfat (currently 16%), eat really healthy, stay stressfree and only moderate exercise. have you been tested for hormone levels? i've been told i have low estrogen due to this problem and this is why Vitex doesn't work for me as it increases progesterone levels, maybe this is why it did nothing for you? what's your current bodyfat percentage? you might be at the same weight as when you were having cycles but you might have more lean muscle mass now so may need to concentrate on increasing body fat, rather than just weight on the scale. Good Luck! keep in touch with any updates and I will too.

08-09-2005, 01:27 PM	#5 (permalink)
MomZ Board Coordinator Join Date: Jan 2002 Location: New England Posts: 7,646 Blog Entries: 385	Ok, thank you for explaining that to me. The first time I took provera I did not get af either. I had to take a second round of it. You might want to mention that to your Dr too.

08-10-2005, 04:25 AM	#6 (permalink)
fitgrl Registered User Join Date: Jul 2005 Posts: 964	Hi Julie, I have actually tried the Provera three times with no result. My RE has given me repeats to try every 6-8 weeks while I am increasing my bf%. Now that you have af are you ovulating?? I appreciate your advice!! Tania

08-10-2005, 09:01 AM	#9 (permalink)
fitgrl Registered User Join Date: Jul 2005 Posts: 964	Hi Julie, I have actually read that premarin works better for some so might try that... That being said - Kilsby said that her RE said that she won't respond to clomid even if she gets a withdrawal bleed so even if I get it my problems may not be solved!! With the injectibles/IUI - if your uterine lining is really thin do you know if an egg will implant?? How has it been going with the injectibles? Is it hard on you?? Good Luck!! My fingers and toes are crossed for you!

08-10-2005, 01:08 PM	#10 (permalink)
kilsby Registered User Join Date: Jul 2005 Location: Colorado Posts: 416	Ftgrl, yes I was confused about why I couldn't take Clomid after I'd had a period after Premarin but the doc said it won't do anything coz of low estrogen & FSH levels. this is why he wants me to do injectibles which will actually give me the hormones that I'm missing! I'm giving myself till early next year to increase BF and try & get periods back - afterall I had them once! For training I've been doing full body workouts, lighter weights 3 x weekly and cardio for 25 mins max 4 x weekly on stairclimber & elliptical - I've cut out running altogether. The funny thing is that my RE and my obgyn have told me that my body fat doesn't look too low - not low enough to stop periods but I think this is due to increased muscle. I'd love you to send those reports and chat, my email is linda@isatoritech.com