Hypothalamic amenorrhea, but never been underweight.
patheticshark
Posts: 15 Member
This might be a bit niche, but here goes...
Since I came off the pill a few years ago my periods have been largely absent - I’ve had a couple a year. I saw various doctors about this, had blood tests, checked for PCOS etc. I’ve never been underweight - I’m 5’6 and was usually around 63kg.
Finally I saw a consultant in July who asked me lots of lifestyle questions. He thought although I’m not underweight, the amount of exercise I was doing (usually watt bike classes three times a week, a couple of circuit classes, usually at least one long run and one long bike ride a week) might be causing hypothalamic amenorrhea (my medical understand of this is a bit vague but basically when your body thinks it’s under attack and doesn’t ovulate).
I’m 32, and would like to start trying to conceive, so although I was a bit sceptical (as usually hypothalamic amenorrhea occurs when people are underweight as well as overexercising) I cut out all exercise except a bit of yoga. And it has actually worked. I’ve now had two vaguely regular cycles.
The problem is I’ve put on a lot of weight - I’m now 70kg and none of my clothes fit! All the advice I’ve found for hypothalamic amenorrhea says eat 3000 calories a day, so I haven’t really been paying attention to it, but I think I’m now unhealthily overweight.
So my question is: if anyone had experienced hypothalamic amenorrhea without being underweight, have you managed to recover your periods without putting on loads of extra weight? I’d like to start sticking to around 1500 calories and (slowly) get back to my normal weight, but don’t want to throw off my recovery.
Any advice appreciated.
Since I came off the pill a few years ago my periods have been largely absent - I’ve had a couple a year. I saw various doctors about this, had blood tests, checked for PCOS etc. I’ve never been underweight - I’m 5’6 and was usually around 63kg.
Finally I saw a consultant in July who asked me lots of lifestyle questions. He thought although I’m not underweight, the amount of exercise I was doing (usually watt bike classes three times a week, a couple of circuit classes, usually at least one long run and one long bike ride a week) might be causing hypothalamic amenorrhea (my medical understand of this is a bit vague but basically when your body thinks it’s under attack and doesn’t ovulate).
I’m 32, and would like to start trying to conceive, so although I was a bit sceptical (as usually hypothalamic amenorrhea occurs when people are underweight as well as overexercising) I cut out all exercise except a bit of yoga. And it has actually worked. I’ve now had two vaguely regular cycles.
The problem is I’ve put on a lot of weight - I’m now 70kg and none of my clothes fit! All the advice I’ve found for hypothalamic amenorrhea says eat 3000 calories a day, so I haven’t really been paying attention to it, but I think I’m now unhealthily overweight.
So my question is: if anyone had experienced hypothalamic amenorrhea without being underweight, have you managed to recover your periods without putting on loads of extra weight? I’d like to start sticking to around 1500 calories and (slowly) get back to my normal weight, but don’t want to throw off my recovery.
Any advice appreciated.
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Replies
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I didn't have a period for 6 years - they disappeared not long in to my weight loss, and didn't return even through periods of weight gain..... Until I stopped training. Admittedly I did have long stretches of being lean (for competition), but even after gaining weight and fat over what I felt comfortable they didn't come back.
I had 3 last year, after a training break, then started training again and they disappeared. I had been dieting slowly during the training break as I was unhappy with my weight. I saw a Dr yesterday in my area who is highly regarded for hormone issues - it took 6 months to get an appt! She's sent me off for a lot of blood tests, and hopefully can work out what's going on. I have everything crossed it doesn't mean putting on weight and stopping training.0 -
patheticshark wrote: »
The problem is I’ve put on a lot of weight - I’m now 70kg and none of my clothes fit! All the advice I’ve found for hypothalamic amenorrhea says eat 3000 calories a day, so I haven’t really been paying attention to it, but I think I’m now unhealthily overweight.
you're still within the healthy BMI at that weight. whether you're happy at that weight is another matter, maybe try and lose half the weight and see what that does to your period?0 -
I would not cut to 1500 calories. I would eat at maintenance for a healthy weight at your current exercise level and then gradually move to a moderate exercise level.1
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I think it a decision you need to make, do you want to lose the 7kgs or get pregnant.6
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Thanks both! I’m not currently doing any exercise and not sure I dare introduce any as that seems to have been the trigger for my periods going awol. Because of that my TDEE is 1621. I’ve definitely been eating much more than that so I’ll try sticking to 1621 and see how that goes.0
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thunderchild007 wrote: »I think it a decision you need to make, do you want to lose the 7kgs or get pregnant.
Sorry I didn’t see this post before. I guess my thinking was because I wasn’t underweight and it just seems to have been the exercise that triggered it, could I just cut back on exercise to resolve it, and try to lose weight through eating fewer calories. But trying to conceive is the priority and I don’t want to jeopardise that.
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It's generally considered an energy availability issue. So if you're super active, but you're not actually fueling that activity, that's an issue. I'm too lazy to re-type out an explanation, but this is what I posted in another group a while back, with some modifications for updated numbers. Basically, you need to make sure that you're getting adequate nutrition to meet your needs. That either means adding more calories -- although not necessarily to that 3000 number -- or reducing your exercise, *or* making sure that your calories are fitting the exercise.
And, it can take time to restore. I've been without a true period for more than a year now.
Lots of math and science ahead...
Energy availability has a lot to do with menstrual regularity. Some research says you need at least 30 calories per kg of your lean mass -- other puts it closer to 45 cal per kg. If you're not getting that, then you can run into problems. So even if you think you're at maintenance, if you're not actually matching what you burn, (and in some cases, exceeding it) you aren't giving your body what you need. The general formula is to subtract your workout calories from your total intake, and then divide that number by your lean body mass in kg. Under 30? Well, if you care about menstrual and bone health, it's time to up your calories.
I'll use me as an example. Right now, my calorie intake hovers around 1445 calories. My average daily workout burn is 256 calories (I use my Apple Watch to track everything, so I trust this number) -- some days it's more, some days it's less. So that leaves me with 1189/42.27 kg of lean body mass. That's 28 cal per kg.
When I'm not ill and actually able to get out and train like I like, it looks more like this:
Ballpark of 1445 calories
Average workout burn:342 calories
1103/41.59 =26.09 cal per kg
When you consider that that's what my routine looks like more, and that that calorie bump is pretty recent for me (I used to be between 1300 and 1400 calories -- so even at the higher end, an EA of 25 cal per kg) it's no wonder I don't get a true period and haven't for a year.
This article may be of interest to you. The subjects weren't underweight, either, and weren't low body fat -- but in those who didn't eat as much, there were cyclical issuses: https://www.ncbi.nlm.nih.gov/pubmed/24888644
This link, with the formula and stats, may also give you something to think about: https://www.iaaf.org/download/download?filename=0f8d15a6-1cd0-4238-bbac-e05afe2eccf2.pdf&urlslug=Chapter 6: Nutrition5 -
Hey OP. I'm following this post since I was just diagnosed with HA and since I'm also not underweight, I wanted to see how you've been doing. I was just diagnosed with HA last Monday after getting off the pill in December of 2016 and not having a period since then. I'm 6'0" but I was eating around 1400-1500 for most of the year this year to try and lose weight while lifting/HIIT/training for Triathlon's etc 6 days a week. Apparently though, this could have started before this past year since some research I've done states that being on the pill could have masked any symptons of HA. I started training for triathlons last year but that on top of stress from planning a wedding could have done it too. BUT, I am currently not underweight at all. I'm at a normal BMI (170lbs) so I was shocked to hear that I had it when most of the cases are from women who are underweight. So, my worry is the same as yours. I'm worried about upping my calories and working out less.
It's been a week now of upping my calories to 2500 (apparently I should have been there for maintenance anyways at my height) and I'm cutting my exercise in half. So, instead of 6 days of weight training and 3 days of HIIT and one 5k a week, I've cut back to 3 days of lifting, 1 light walking day and 2-3 days of hot yoga. No more cardio (steady state or HIIT). No more triathlons or races. No more weightlifting for over an hour. This has been my LIFE since I started this in January so if any other women on here would like to connect that would be awesome. My husband and I are also ready for children and fixing this would be the first step.
For those who are suffering from this and will not give up exercise like myself, I recommend this site: https://www.myharecovery.com/ and the e-book called: Fit and Fertile How I Found My Body's Fitness From the Inside Out
It's helped me tremendously to realize exercising is not the end all be all. Although, I haven't gotten to the place of giving it up entirely, I'm hoping that by cutting it in half, adding in yoga, and upping my calories by a good amount will help me. I do feel better eating more for sure. And I'm still tracking 90% of the time just to make sure I'm getting in my protein.1 -
I had to stop all intentional exercise. I took short walks with my dog and stretched but no intense yoga or anything that felt like stress to my body. I worked with a dietitian and she suggested I don't count which I couldn't cope with at the time as I had worked so hard to lose weight and was super lean. However besides not getting a period, I slept like crap and would wake up all hours of the night wide awake.
My hormones were so out of whack and while I always ate between 1500-2000 calories, my output was between 2500-3000 as a runner/lifter. While I gained weight slowly at first and stopped lifting but kept running, I truly didn't recover. I would eat 2500 one day or maybe 3k but the next day would go back down to 1500 to compensate. It wasn't until I went "all in" and just walked a little that I got mine back.
I know some people can just cut cardio and still lift but I didn't get it back until I was overweight by BMI standards. I lost mine around 22 BMI for 6 years. Now, I'm working on losing the weight I gained from mindless eating after falling into a bad funk a year and a half ago. This time, I'm working out intensely as it energizes me, but making sure I'm eating enough to lose sustainably (2000-2300 most days) and I'm still getting my cycle. When I started screwing around with going paleo/keto and lifting in addition to the cardio, I lost it the first time.
While I'm not thin anymore and feel like I lost part of my identity with "healthy living" my hormones are finally working again and I'm able to fall asleep if I wakeup in the middle of the night. My body doesn't feel like it is in panic mode all the time anymore. I would strongly suggest working with a dietitian who is well versed in HA as the right professional can help you through this. It is hard to go through as water weight, increased calories, less exercise will mess with your head a lot, especially if you've been chronically in an energy deficit for awhile (which is what causes HA in the first place)patheticshark wrote: »This might be a bit niche, but here goes...
Since I came off the pill a few years ago my periods have been largely absent - I’ve had a couple a year. I saw various doctors about this, had blood tests, checked for PCOS etc. I’ve never been underweight - I’m 5’6 and was usually around 63kg.
Finally I saw a consultant in July who asked me lots of lifestyle questions. He thought although I’m not underweight, the amount of exercise I was doing (usually watt bike classes three times a week, a couple of circuit classes, usually at least one long run and one long bike ride a week) might be causing hypothalamic amenorrhea (my medical understand of this is a bit vague but basically when your body thinks it’s under attack and doesn’t ovulate).
I’m 32, and would like to start trying to conceive, so although I was a bit sceptical (as usually hypothalamic amenorrhea occurs when people are underweight as well as overexercising) I cut out all exercise except a bit of yoga. And it has actually worked. I’ve now had two vaguely regular cycles.
The problem is I’ve put on a lot of weight - I’m now 70kg and none of my clothes fit! All the advice I’ve found for hypothalamic amenorrhea says eat 3000 calories a day, so I haven’t really been paying attention to it, but I think I’m now unhealthily overweight.
So my question is: if anyone had experienced hypothalamic amenorrhea without being underweight, have you managed to recover your periods without putting on loads of extra weight? I’d like to start sticking to around 1500 calories and (slowly) get back to my normal weight, but don’t want to throw off my recovery.
Any advice appreciated.
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^^^^
I know I'm not the OP but this is great advice. I got word right after I posted prior that my plan listed above was still too much. So, I'm dropping to 2 days of lifting and only yoga or walking until it comes back. It's funny you mentioned Paleo/Keto because I'm thinking that may have been the start of my issue. I was training for triathlons/lifting and doing Keto last yr but I think the birth control was masking the issue. But I didn't realize it until I went off the pill last December. I'm happy to know you've gotten your hormones back in check. I can only wish it happens for me within a few months. how long did it take you?1 -
Yes, BC will mask the issue as it prevents you from ovulating and mimics a cycle. My OBGYN wanted me on BC while not having a period to protect my bones but she also stressed wanted to get to the root of why I was not cycling naturally. A LOT of drs do not know much about HA and severely underestimate how much rest/calories it takes to get a cycle back. If you're on FB, there's a group with many women recovering through this. Many have the same concerns with gaining weight, eating too much, etc and it is good support.
I think cutting back the activity is definitely wise but the most important thing will be getting enough calories consistently. This may be TMI but I had a lot of vaginal dryness and no sex drive as my body was essentially in menopause all those years. Although I had a DEXA scan to make sure I was not osteopenic, I knew my body was out of balance and if I wasn't ovulating, it was a sign my body is in too much of a famine to feel it was "ok" to reproduce.
It honestly took me about a year of trying and eating enough/not formally exercising with about 6 mos of it really "all in". The first part of the year was not consistent and I would give up and try to minimize the weight gain/start working out and undo any progress I had made. I would have signs like increased discharge (sign of increased hormones) and then start exercising/restricting intake and I would be back at square one.
Looking back, if I had just gone "all in" and kept my calories consistently around 2500-3000 from the start, it probably wouldn't have taken so long. I think my body honestly wasn't sure if it was going to be deprived again. Until I really gave it time and stopped giving up after every few weeks, I was not making progress.
You will definitely notice signs of hormonal activity before actually getting a period again. I believe I took on the longer end compared to many of the stories I have read in the FB group. Many get it back in 1-4 mos of "all in." I think also because I hadn't had one for such a long time that it also took longer.need2belean wrote: »^^^^
I know I'm not the OP but this is great advice. I got word right after I posted prior that my plan listed above was still too much. So, I'm dropping to 2 days of lifting and only yoga or walking until it comes back. It's funny you mentioned Paleo/Keto because I'm thinking that may have been the start of my issue. I was training for triathlons/lifting and doing Keto last yr but I think the birth control was masking the issue. But I didn't realize it until I went off the pill last December. I'm happy to know you've gotten your hormones back in check. I can only wish it happens for me within a few months. how long did it take you?1 -
https://facebook.com/groups/1759358524278511/
Here is a link to that group on FB for HA. Such a good support system there for women dealing with this issue.0 -
Thank you. I'm part of that facebook group already thankfully. It's helped a lot as well as a fellow MFP friend who also has HA. She was successful and ended up having a beautiful baby boy. I like reading about the successess and I hope to be one soon. I'm glad to know that your body will show signs of hormonal activity before getting your period back. That's reassuring to see if I'm on the right path. It's only been a week though. I'll check back in a month or so on my progress if there is any.1
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I just wanted to pop back in and say that I officially got my period this week. Over a year with hypothlamic amenorrhea and 45 days after reducing my exercising and eating more (2500-3000 calories). I will drop down to maintenance of 2500 calories and increase my weight lifting again while still avoiding cardio until my second cycle just to make sure my body is back to normal. I'm hoping just dropping down to maintenance calories and increasing weight lifting again will help me lose a couple of the pounds that I put on. I'm crossing my fingers!!!
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I'm so glad I found this post! I hope you have all had a healthy year and found a good balance. I went to the doctors last year because of irregular/non existent periods and they put it down to iron levels but didn't ask me about my lifestyle and I didn't think working out 6 days a week was connected so I didn't bring it up. This year I've only had two periods and have been taking iron supplements since last year so couldn't understand why they hadn't come back! I have just booked an appointment but was wondering did you have any specific hormone levels checked,etc when you had blood tests? Also I am a healthy weight and a happy eater!0
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cazzybear1740 wrote: »I'm so glad I found this post! I hope you have all had a healthy year and found a good balance. I went to the doctors last year because of irregular/non existent periods and they put it down to iron levels but didn't ask me about my lifestyle and I didn't think working out 6 days a week was connected so I didn't bring it up. This year I've only had two periods and have been taking iron supplements since last year so couldn't understand why they hadn't come back! I have just booked an appointment but was wondering did you have any specific hormone levels checked,etc when you had blood tests? Also I am a healthy weight and a happy eater!
You have an appointment with a different doctor, yes? Anyone who would not grill you on exercise is not worth returning to.1 -
Yes a different doctor this time. I feel silly too for not bringing it up. Who knew you could be too healthy?!1
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The key hormones to get tested are estrogen, LH, FSH, progesterone. The various levels of these hormones will help differentiate between HA, premature ovarian failure, PCOS, and other conditions. It will also give frame of reference for phase of menstrual cycle if you happen to be in one. They can also test TSH bc severe abnormalities in thyroid function can affect menstruation, but you would likely have other symptoms and this is quite rare.
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The key hormones to get tested are estrogen, LH, FSH, progesterone. The various levels of these hormones will help differentiate between HA, premature ovarian failure, PCOS, and other conditions. It will also give frame of reference for phase of menstrual cycle if you happen to be in one. They can also test TSH bc severe abnormalities in thyroid function can affect menstruation, but you would likely have other symptoms and this is quite rare.
Thank you so much!0 -
patheticshark wrote: »thunderchild007 wrote: »I think it a decision you need to make, do you want to lose the 7kgs or get pregnant.
Sorry I didn’t see this post before. I guess my thinking was because I wasn’t underweight and it just seems to have been the exercise that triggered it, could I just cut back on exercise to resolve it, and try to lose weight through eating fewer calories. But trying to conceive is the priority and I don’t want to jeopardise that.
Honestly, I would stay off the cutting calories/dieting until you have had children. It might put you at risk of having problems to conceive or losing the baby. Hypothalamic amenorrhea is usually caused by stress (could be dieting, exercising, stress in personal or work life etc), and, thus, can occur in normal weight women. Cutting calories just puts more stress on your body. Good luck, hope everything turns out the way you wanted:)0 -
Just a quick update! I'm waiting for blood test results to check my hormone levels but new doctor seemed to think HA is most likely. Thanks to this thread I joined the Facebook group No Period, Now What? If you are in a similar situation, then I really recommend joining it. I feel like I was in denial 2 weeks ago when I first read about this condition. I've followed NPNW advice and although it has been sooo hard to do, the constant recovery stories in the group keep me on track.0
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A lot of people talk about fueling but they rarely mention cortisol when it comes to amenorrhea. Exercise and esp. intense exercise increases cortisol and disrupt gonadotrophin production. I am in the process of getting mine back and I never increased my intake by a lot and gained about 2 lbs total but stopping HIIT and 3 hour practice sessions I already have results. I am getting my usual PMS symptoms and all signs of ovulation. Hope this helps!3
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