Thursday, January 17, 2008

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!

30 comments:

Kristen/Chris said...

Wow! Nico, thanks so much for your synopsis. I had not heard about this. Very interesting. Great of you to share it. I agree that it is crucial to stop the overexercising/undereating, but it is nice to know that there are new treatments besides injectibles for HA.

S said...

That is good news! Thanks for sharing it!

Le Petit Chic said...

Thanks for sharing this. That's a very interesting study.

MMP said...

WOW... I JUST found this blog and I think it is SO wonderful that you took the time to do so to help other women out! You have NO idea how exstatic im am to have found this! I got off the pill in Dec. 08... havent had a period since and it has really had me down! I went to an OB for a few months, racked up a large bill, and left with no more knowledge then when I went in the first time! I have read a large fratility book and researched the web for hours & hours and still had no for sure answers! This week I went to an Endocrinoligist who said its either HA or PCOS and she plans to have me try the Clomid soon either way. We are going to do the blood test in a couple weeks to find out, but after reading this, im almost certain this has got to be it! For the first time in 7mo. i finally feel that something is making sense! Plus I was VERY hesitant to try the Clomid and what i've read so far puts me more at ease! THANK YOU SO MUCH! I had found PLENTY of wall posts prior with women in the same boat but NO ONE had ever followed up to say how anything turned out! This is just SO great! I look foward to reading this site from top to bottom! :)Thank you thank you! You will probally be hearing more from me soon!

Mccaugh said...

Hi Nico, I also wanted to thank you for this info. I have been diagnosed with HA as well, however my profile does not quite fit the 'normal' profile in that I'm not underweight or do excessive sport, but it appears that I have this problem due to excessive stress levels. It also appears that my body went into this sort of hybernation (HA is basically the pituitary gland hybernating) because I used an Implanon which was inserted after I had my son 4 years ago. The Implanon depresses the function of the pituitary gland and it appears that this is what tipped me over the edge into HA. I have had the Implanon removed in May 2007 and have not had any periods since. I have not reacted to the provera withdrawl bleed and the MRI has ruled out pituitary tumor/sheehans syndrom. I should add that before Implanon I was on the loette and never had any period issues or issues conceiving my son. It seems that women with Type A personalities are more prone to HA especially in combination with a depressant such as Implanon. After a long search I finally found a wonderful endocrinologist who has suggested either the clomid option that you spoke about or alternatively a new pill QLaira (http://www.medicalnewstoday.com/articles/125774.php), which has been approved in Europe but is not yet here on the market. It is a contraceptive pill BUT my endocrinologist says it might very well kick start the system again. She wants me to take it for 3 months and then stop and see what happens. Meanwhile, as I have to get the stuff from Germany she has put me on Vagifem to relieve the vaginal dryness a little.
Loads of good karma to all of you,
Nat

allison said...

It is good to see so many discussing this condition and how it may be overcome. I have been diagnosed with the same but have become very confused in my research as i am neither an undereater nor do strenuous exercise. If anything I am slightly overweight and lead a busy life without much time for exercise. Is anyone else like this?

Anonymous said...

I think this is amazing! I have not had a period for oyer a year after taking bcp for 13 years. I worked out 4-5 xs a week and lost 10 pounds. I have just done one month of clomid 50 mg after gaining a few pounds and cutting back exercise and have responded. I have come to the conclusion that it may take a few months of clomid to hopefully conceive! Thanks so much for the info!!

lynn said...

This is amazing....i have been pregnant once and had a miscarriage. Three months after my miscarriage my periods started getting further apart then quit. I did not have a d&c. I have not had periods since. I have had extensive testing and the endocrinologist considers it to be unexplained infertility. I am normal when it comes to weight and lifestyle. I was on bc pills however from 15 to 20. I tried the injectibles one month and had over 20 fertile eggs. Now i was too fertile. Ughhhhh!! Needless to say I haven't tried again!

Anonymous said...

Hi -
I have been diagnosed with HA, I haven't had a period in four years. i lost my period around the time i went off anti-depressants (i had been on them for five years), simultaneously had a big weight loss and life change. a shock to my system i guess. i have tried accupuncture and estrogen therapy and this hasn't restored my periods. have you met anyone who has gone this long? i'm worried i won't be able to get it back.
i will ask my doctor about the clomid.
thanks for making this site.
a

MGS said...

Nico, I have been researching like crazy since I was tentatively diagnosed with HA, and I'm so glad I found your site. I've been off my BCP for 8 months and no AF; negative responses to 2 rounds of progesterone. It's good to be reminded emphatically of the need to put on weight as that idea stresses me out even more than cutting down on my 4-5x/week moderate exercise. I have a couple of questions for you and others: how did your work/job suffer during this time? I'm trying to finish my dissertation and I know it's crazy, but I'm worried I'll lose my motivation if I cut down on the mental "whipcracking," caffeine, and general feeling of discipline that I've seemed to need to keep progressing!

Nico said...

MGS, if you feel like you need the exercise/restricting mentality to help you finish your dissertation, perhaps you should wait until you're done and then try the changes and to get pregnant? Just a thought :-)

Anyone who finds this, please come post on the fertilethoughts HA thread at http://www.fertilethoughts.com/forums/lifes-journey/343535-hypothalamic-amenorrhea.html

There are thousands of pages of posts you can read through, but also, don't be intimidated to join in on the conversation! I post there quite a lot but don't check comments on this blog as frequently as I should. So if you have questions or would like to talk to others in the same boat, that's a great place to go.

Anonymous said...

Hi im from queensland australia ive had amenorrhea for the past 4 years im 24... im vegan does anyone know if eating red meat has any sort of impact?? the end of my cycle and the start of the amenorrhea coincide.Thanks

Anonymous said...

Anyone have advice about supplements, seeing a naturopathic dr.? I was an endurance athlete and on the thin side, but I have stopped exercising and gained weight (5'6", 135lbs), and still no menses (14 mos now). I very much want to have a baby. Repro. endocrinologists have told me to eat dessert, or go through IVF. Looking for a more holistic approach before going through extreme medical procedures.

Nico said...

Anon from 2/10, a few comments (if you're checking back :). First, I would honestly work on gaining a little more weight. At 5'6" / 135lbs, your BMI is still only 21.8... a few more pounds and you'll still be slim, but it may just be what your body needs. There is also a study that I saw recently that showed that taking acetyl-l-carnitine daily can help with getting your period back. I don't have any experience with that, but it won't hurt. Finally, it is not that case that your choices are more dessert or IVF. You could absolutely give Clomid a shot - the extended protocol has worked really well for women I know with HA. For most, all that is needed for pregnancy is ovulation, which Clomid seems to do pretty well. You can also try injectibles before heading right to IVF. Please come join the HA board at Fertilethoughts, if you haven't already, to discuss more :)

Anonymous said...

Thanks for all the information. I was diagnosed with HA in December by a fertility specialist. I went of the pill in August and still have no period. I am so frustrated b/c i have had to get an MRI, see an endocrine specialist and might possibly see a neurosurgeon (b/c the MRI showed an incidental pineal cyst) and all the blood work i have had so far has come back within range. My BMI is normal. I have cut down on my exercise routine by eliminating the gym and just doing Yoga 3-4 days a week. My doc said that Clomid wouldn't work and that I would have to change my life style or take shots...but now I might ask about the Clomid again. Ugh!!! So annoying!

monika said...

HI! Hoping I can get some insight on my situation. I was diagnosed with HA in 09'. I really didn't do much to help the situation till maybe Spring of 10'. At that point I tried acupuncture and chinese herbs and "reduced" my exercise. By Sept of 10' I decided to go to a fertility specialist and they started me on Estrace and clomid. I also further cut down exercise. Within a month I got my period back. I have done the clomid and UIU every month since and have had no success. I did have 2 chemical pregnancies. In looking at my Bloods it seems like my estogen levels start off good... then drop off before ovulation. I don't know if that has anything to do with it, or why this happens... but they want to start me on Bravelle shots next month. (if this cycle didn't take... which is more than likely the case.) I'm a bit confused with all this... so any insight would be great!

cherrymaja said...

Hi everyone,
i'm so glad I found this blog! I'm from Hungary,a small Eastern-Europian country,and although the whole nation-well,the youth of it- is online most of the time,I still had the feeling I'm the onyl one with HA in thewhole wide world. I'm 23 yrs old and got off the pills in 2010 august, after almost 6 yrs of using. So I haven't got my period since 10 months now..much to my greatest regret, I fit perfectly to the average form of HA: until last month, my BMI was around 17.6-18.5, and I had pretty serious amount of excersise, kick-box traings, 6 times a week [50 minutes/day].
Don't ask for rational reasons, cause I haven't got any in store. I must have been really sick in mind. Nevertheless, I cut down ny regular excercise to mild joggning and gained weight, so my BMI is 19.8 right now,but I'm determined not to stop until I reabh 21:-)
I already sought medical help,and after the blood test had proven the diagnosis of HA - low FSH, LH, oestrogen and progesteron,and PRL- the gynecologist put me on oestrogen therapy in order to prevent bone loss. Right now I'm inthe middle of it, but I don't think it would help me to restore my natural period. I've already tried progesteron challemge 2x, it didn't work...so I just wanna say that I' so grateful fort this hint about clomiphen theraphy! I must confess that I started to loose hope to get healthy again and have children over time. Of course, there's still a long way to go. But thanx to this blog,I've changed my mind about offering my long-term boyfriend to break up, because he'll never be able to have a proper, healthy family with me...I was ready to do that for him,he deserves nothing less but still, it just broke my heart.
So thank you, all of you, for giving me strenght to go on and try yet another method to get back my missg,ng period and thus my whole womanhood!
Krisztina G.

Wendy Kroy said...

Did any of you experience digestion upset with HA? For example, did you have a bloated belly the entire time? I am of normal weight/height (5'6, 130ish) and I have been bloated every since the beginning of this. It's very much like a PMS that never ever ends...

thanks

Stephanie said...

Thank you of this!! Still relevant a few years later and I totally need these pick me ups right now. I would love to chat with you more if you are up for it.

Anonymous said...

Hi, I can not believe i have been battling HA since 2008 and have never found this site.

I am now 35, did one failed round of IVF. I get periods from provera challenge sometimes, but other times not.

im 130 pounds at 5'5.25''. I feel i have a normal bmi. I am also very healthy and eat very good. only good fats etc.

I do exercise as well, yoga/ barre and running. I do not feel it is excessive, however, i know every body is different.

i had completely normal periods up until i was 25 years old. i had a serious bout of anxiety, lost alot of weight on my already small frame (not from not eating though) - and it vansihed. The provera challenge started it back up and it lasted 2 full years, then went away again. Then i got into ivf and it has been a whirl wind.

right now im trying to mimic cycles with estrace and prometirum. Six months and i just got my first period. One doctor tells me it's not going to help.

my LH and FSH are nearly indetectable.
One MRI doctor said he say a small microadenoma, another MRI screen said i do NOT have one. I took both to MAYO CLINIC - who refused to retest b/c based ont he images they said i do NOT have one.

I have been pulled around the block and back, and now am having major marital problems due to this stress. this is not helping the cycles.

I have never even heard of using clomid for this. my IVF doctor wanted to pull out the big guns right away and do ivf. im upset with the whole process.

ANYONE - anything - please help. i cant believe i have found others, i thought i was alone.

gerlie said...

hi everyone;
i just found this blog and i have this kind of situation also but I dont know if what type of Amenorrhea i have because since I reach my puberty stage until now that I am 30 yrs old I still dont have a menstruation,anyone who can give me an advice if what i can do.
I really appreciate it,thanks! God Bless us All!

Leslie said...

So happy to find this blog! I am at my wits end...

I am a 30 yr old who hasn't had a normal period in four years, which is also when I stopped birth control, simultaneously begun excessively working out and massively cutting calories. In retrospect, I know I was living an unhealthy lifestyle, but I don't know what came first, the chicken or the egg? (no pun intended)
I have since stopped the bad exercising and eating habits and gained all the weight back and I'm about 5'5" and weight 132 lbs. My period had still not appeared. A year and a half after I stopped the birth control, one of my drs put me back on it and my period came back for 2 months. Then I experienced a retinal vein occlusion in my right eye (blood clot), and thus was removed from the BC again. Just after that, I was also diagnosed with ulcerative cholitis by my gastroenterologist.
I live in NYC and my job has me under intense stress. I have had bouts with depression but have never taken any anti-depressants. After another year of my GYN telling me not to worry about it, I finally asked to see a reproductive endocrinologist. He claims that I will still be able to get pregnant someday, but sent me to a hematologist to figure out if they could put me back on some kind of HRT without risking another blood clot. She ok'd it, along with a low dose of coumadin, but both times he presented my case to the team at Cornell, they decided against the added risk.
I was told it was the end of the line with those specialists, and although he suggested I see an osteoporosis specialist, I am so sick of seeing more drs! I made another GYN appt to see if she thinks I should see another endo for another opinion. I have also just started to see a psychologist for depression/anxiety treatment.
If I can now rule out not eating enough and working out too much, is the only last cause the stress level? If I have a risk of blood clot, does anyone know which therapy doesn't put me at risk, but can return me to a normal cycle, even though I am not currently looking to get pregnancy? Or would the final answer be to eliminate the stress factors and allow my body to readjust?
Sorry for the long info, but it's been a journey...
Anyone's input would be greatly appreciated!

Lisa said...

People have to be careful with the word cure.

healthynoperiod said...

Has anyone with a history of primary amennorhea (never a menstrual cycle on its own, NOT affected by weight, eating habits) done the injections? I tried clomid up to the highest dose with no luck, so need to consider hormone injections or IVF. Curious of outcomes on similar cases. Thanks!

Nico said...

Leslie, I think that it might be worth it for you to try the extended clomid protocol? The original study was done on women who were looking to regain cycles but not get pregnant.

Healthynoperiod, I do know of one other person with primary HA, but I think you're a little further along in treatment than she is, as she is just trying clomid now. If your HA stems from the hypothalamus not producing hormones, the injects or IVF should absolutely work (make sure they're including LH in some form!). If your primary amenorrhea is because your ovaries don't respond to the hormones, that may be a different situation...good luck!

Healthynoperiod said...

Injections it is! With close monitoring and the injections, hopefully the eggs will mature and release. Dr is confident they will respond as the pituitary Just won't send the signal to ovulate so the meds will Hopefully do it. Will keep you posted. I have 2 sisters with primary HA also...Pray that it works! It would be nice if my state and insurance recognized it as a medical condition though!

Angrd said...

SO I am just coming off an extended protocol, based on reading your blog as my support group nightly. Convinced my RE to try clomid. He said he would start with his clomid challenge test (100 mg for 5 days), if that didn't work, he would give me another 5 days. At the first ultrasound on Day 6, I had no active follicles and my lining only grew to 3 mm. I proceeded to take 150 mg for the following 5 days, and went back to find I had 4 growing follicles (12, 13,16,17). Will keep you updated on progress. The only other things I have been doing is really decreasing activity and eating a ton along with acupuncture.

Dannielle Hyde said...

I too want to say that the extended protocol worked for me! I have been trying to get pregnant with my second child for 1.5 years with no luck. I conceived my first son with Femera and IUI after a failed IVF cycle. We started trying again when my son was 1 years old. I was exercising (running/weights + high intensity interval training) 7 days/week and eating far too few calories for my workouts. I had 14% body fat and weighted 102lbs. We tried 10 cycles of Femera plus injections with no luck. I then came across this post and told my Fertility Specialist. She hesitantly allowed me to try to protocol and to our surprise, I had a 17mm follicle on cycle day 10. I did a HCG trigger on day 14 when my follicle was 23mm to allow my uterine lining to thicken with Estrace. We then did IUI, but it didn't workout. We are now trying the !50mg Clomid cycle days 2-7. I am soooo happy that the extended Clomid cycle worked! I should also mention that I completely stopped exercising the month prior to doing the Clomid cycle and as a result gained 10 pounds. I feel very 'fat' but know it will be worth every pound when I get my second BFP!

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