Hypothalamic amenorrhea anyone? — The Bump
Pregnant after IF

Hypothalamic amenorrhea anyone?

I am wondering if anyone was diagnosed with HA and had success? I am also wondering about the protocol for inducing period. I was induced in order to do a month of testing, but now I'm wondering if they will have me do 3 weeks of estrogen/10 days progesterone to induce again before using medication for ovulation?

Thank you!

Re: Hypothalamic amenorrhea anyone?

  • I have hypothalamic amenorrhea. From your username, I am assuming you probably have it for the same reason as me... exercising too much and not having enough body fat.

    They were never able to induce a period with me, progesterone did not work. What do they plan on having you do? As far as clomid, that does not work for people with HA. My treatment plan was using Menopur shots nightly. After 14 days I used the trigger Ovidrel. Had the IUI and it worked the first time. I'm now 29 weeks pregnant and expecting a bouncing baby boy!

    If you have any other questions you can ask here or PM me. :)

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
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  • I have hypothalamic ammenorhea from excess running (even though my body fat is fine!). I did 3 rounds of IUIs with injectable menopur like @adorkablepixie. My RE never had me induce a period initially to start the IUIs. None of them were successful, and I took a break from November to January and then started my first IVF cycle. My RE put me on birth control in the in between time, so I did get 2 periods. My IVF cycle was with just menopur as well. I am now going to be 8 weeks pregnant Wednesday from my first fresh transfer!!! Still in shock and disbelief....feel free to ask me any questions as well. This whole process is so confusing and draining!!
    AdorkablePixie
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  • @laur2444 Congratulations!!!! I think I remember you from the Infertility boards, if I'm not mistaken!

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
    laur2835
  • Yes @AdorkablePixie !!!!! I finally made it! It's been a journey but hopefully this is the start of a positive one now!! 
    AdorkablePixie
  • @laur2444 I am so happy for you!! Best wishes for a happy and health 9 months. How have you been feeling so far??

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • laur2835laur2835 member
    edited March 2016
    @AdorkablePixie knock on wood I've been feeling totally fine. No morning sickness or nausea yet... I am 8 weeks today so I'm hoping I'm in the clear! I go Monday for another ultrasound, but last Thursday I was measuring perfectly with a heart rate of 145....I almost died when I saw!!! How has your pregnancy been??
  • @laur2444 That's awesome! I never got morning sickness or anything, so hopefully you won't either. :) This pregnancy has been pretty fantastic so far. No complaints on my end! I only symptom I've had constantly is fatigue. I've had some RLP pain and some backaches, but as soon as I started sleeping with a pillow between my legs, the lower back pain is gone. Isn't seeing the heartbeat amazing!! Wait until you get to hear it! And see little one move for the first time. It is so amazing. I feel so blessed.

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • @runfast I am from the infertility boards but saw your post. I have HA also, my BMI is normal but I was doing HIIT 6x a week and they believe that was the cause. I stopped working out, only walking now, right before my first round of clomid. I didn't respond to it but we went up to 150 mg the next week and I had one large folli, I triggered that day and did a IUI this past Saturday. I'm not sure if my body reacted to the clomid the second time because of back to back rounds or if it was because of the no working out but either way I reacted to it. I have found a few blogs where other ladies have had success with clomid as well by doing an extended protocol or once they stopped their physical activity all together. 

    @AdorkablePixie I remember seeing you on the infertility board, congrats! 
  • @ale9687 Thanks! :) I hope you join us over here on this board soon!!

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • runfastrunfast member
    @laur244 Thanks for sharing your experiences. We did our second IUI which kind of worked. I got pregnant, but miscarried at 7 weeks. I am going to move on to IVF now. Would you mind sharing your protocol with me just so I know what to expect? I won't be starting for a while. I need my hcg to get to zero then to induce 2 periods. Congratulations on your pregnancy! Great to hear things are progressing well!
  • @runfast I am sorry to hear about your loss. I hope IVF is more successful for you!

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • So sorry to hear this @runfast.....I hope IVF works on the first try for you too!!! Basically my protocol was the same as it was for my IUIs....just menopur nightly and then trigger with hcg. The menopur was a much higher dose than it was for my IUIs though.....I went up to 4 vials nightly by the time I triggered. I stimmed for 14 nights I believe. After retrevial, which was painless and easy, I started progesterone in oil injections intramuscularly nightly, which I did until 10 weeks pregnant. Really, the whole process wasn't too awful since I was used to all the injections from my IUIs. I was 4 months yesterday though, and we know that we are having a little guy!! So far pregnancy has been super easy (never was sick at all) and I still am wearing all my regular clothes (I gained maybe 3 or 4 pounds so far). Please keep us posted on how you do and let me know if you have any other questions!!! Best of luck!!!!
  • ale9687ale9687 member
    @runfast so sorry to hear of your loss, i'm on iui #2 and if it doesn't work i'll be going to IVF. Have you cut back on running? Right before my first IUI I quit working out except for walking. Mentally I think that has taken more of a toll on me than this infertility journey. I hope when you're ready IVF works for you.
  • Yes @runfast, I forgot to mention, during the IVF process I changed my running to walking around 5 miles a day at a pretty vigorous pace. While hard at first, the change was actually nice and I was surprised to see my weight didn't skyrocket!! Believe me, it killed me not to run but I got the results! 
  • Off topic but awwww @laur2444 a boy!! :D That's what DH and I are having too.

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
    laur2835
  • @AdorkablePixie it is so insane.....literally every single friend we have who is pregnant or has had a kid in the last year is a boy!!! We don't know any girls!!! Something in the water here in Connecticut!!! How are you doing?! Home stretch!!!
    AdorkablePixie
  • runfastrunfast member
    Thank you all! Such a helpful, kind group! I am excited for all of your success and hope one day I can join you. I think the mental issue of stopping exercise will be most challenging. I did cut back before I got pregnant, but since my miscarriage last week, I've ramped up as stress relief. I know I have to wait a few months anyway, so I figure I'll cut back again in a few weeks. 

    I'm curious if any of you have ovulated randomly. I know I have no ovulated on my own once in 2 years, but I hear of people with HA who do occasionally ovulate. I wonder if a miscarriage can kind of reset your system. I totally made that up, but who knows...?

    Best of luck to you all! Thanks again for all of your helpful feedback!
    AdorkablePixie
  • runfastrunfast member
    edited May 2016
    @ale9687  I hope your IUI works!! How is it going for you to not be doing as much exercise? When I have cut back, if I stay busy it isn't terrible, but days when I am not so busy I really struggle. I don't feel normal without a run! That's awesome you saw such a great improvement in your results from changing up your behaviors. It is helpful to me to hear that too! Do you have very low estrogen? I worry because with my IUIs my estrogen was always super low before ovulation. My doctor said that is normal with letrozole, but I still worry!
  • ale9687ale9687 member
    @runfast just found out today were canceling this IUI :(, last month I did the extended protocol with clomid 100 then 150mg. This month we did 7.5mg letrozole and I only had one folli but it wasn't big at all which was a bummer. My estrogen is still on the low side but with the clomid they said it was almost at ovulation level but I still triggered.  After IUI one I had a small withdrawal bleed which I haven't had in over a year with trying provera. I work in NYC so between all the walking and such I'm still active so I don't feel so sluggish not working out. Which injectibles did you use for your IUI?
  • runfastrunfast member
    @ale9687 I'm so sorry :( Being canceled is so hard. I was canceled 3 months between September to February and finally switched to a new clinic because I was so frustrated. I used follistim which didn't work then switched to menopur which gave me better results.
  • ale9687ale9687 member
    @runfast I know canceled cycles make me feel like time is slipping away. Since we first went to the RE last June we've only done one IUI. That's partly why I'm just ready to go to IVF. 
  • @laur2444 I am doing great! I think there is something in the water here too, it seems like everyone I know is having boys as well. lol More playmates for my LO! How are you doing?

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • @AdorkablePixie all is well here! I have my anatomy scan next Wednesday and will be 18 weeks! I'm just starting to notice my stomach changing....can't quite suck it in like I used to!! My work pants are def. not going to button too much longer!! I still feel great though! Noticed the past week or so I feel way more full than usual after eating the same as I normally do....I hope that goes away because I love eating!! Lol what is your due date???
  • @laur2444 How exciting! I remember when my stomach finally started changing, it took forever. lol I think I was like 21-22 weeks before something happened. My due date is actually the 23, so very soon!! Every time I go into work I have two of my coworkers joke with me that they are not doctors and cannot deliver my baby. haha

    Me: 31

    DH: 29, SA - Great

    Married: June 12,2011

    TTC #1: 1/2014

    Diagnosis: Hypothalamic Amenorrhea

    Treatment: Clomid:  50mg, 100mg, 150mg - not successful and not monitored

                      Menopur 75ml (upped to 112.5ml), Ovidrel, & IUI  IUI #1 8/31/2015

    9/15/2015: BFP HCG - 400, 9/17/2015: HCG - 827, 9/21/2015 - HCG 3,327!
    Heartbeat 10/2/2015: 118bpm
    DS: 5/27/2016

    TTC# 2: 12/2017
    BFP: 4/20/2018
    EDD: 12/29/2018
  • Hello ladies! I have HA and this is my third round of injectables. I used follistim for the first 2 and ended of overstimulating on both of them with a bunch of follicles, but my estrogen never went above 30. I suggested menopur before the start of the third round and they agreed. I stimmed for 14 days on menopur. They started me on 75 units and slowly worked me up to 150. My estrogen finally responded a week ago and went to 50 (that was huge for me). I stayed on the same dose and 4 days ago my estrogen went to 200, with a lining of 6 and a lead follicle of 14. I stayed on the 150 units until yesterday when I went in for an ultrasound. Waiting for the call was torture. My doc finally called and told me my estrogen was 600!, my lining was 11, and my lead follicle was 17 and I had 2 smaller ones at 15. I triggered last night and BD'd last night and will again tonight and tomorrow. Any success stories in this 2 week wait? I am going to go crazy! Is there anything you guys suggest I do or don't do? Can I still run a little, drink wine, etc?
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