PCOS and hypothalamic amenorrhea are two specific, different diagnoses. Most medical professionals would never dream of diagnosing a patient with both. Nevertheless, my research, personal experience, and work with clients have demonstrated without doubt that millions of women suffer from both.
PCOS and Hypothalamic Amenorrhea: Why People Think They’re So Different
The majority of women who have PCOS fit into a particular category, and most medical professionals lump all women with PCOS into this category.
For this reason, PCOS typically is understood as a condition of excess. I describe this in great depth in my post on The Causes of PCOS, and also in my manual for overcoming PCOS – PCOS Unlocked. For them, PCOS means being overweight, means high insulin levels, and means high testosterone levels. Other hormone levels might be elevated, too.
For women who fit the PCOS norm, inflammation, overeating, and high hormone levels are considered a problem – thus the idea of excess.
Unfortunately, there are millions of women who suffer from PCOS but who are not quite in the same state of excess. I’ll talk about them (I am one of them) in the sections below.
On the other hand, hypothalamic amenorrhea is typically understood as a condition of scarcity. In hypothalamic amenorrhea, women tend to be very thin, tend to undereat, tend to overexercise, and tend to have very low hormone levels.
For these women, their hormone problem is that they do not produce hormones. Their bodies believe that they are starving, so they shut down reproductive function. This is an evolutionary adaptation. It is potentially life-threatening to be pregnant in a state of famine. To protect against that threat, the female body shuts down when it thinks it may be starving. This is what happens to women and girls with hypothalamic amenorrhea.
PCOS and Hypothalamic Amenorrhea: Why They are Not So Different
PCOS is complicated. It’s an easy diagnosis, but the causes of it are rarely understood. This is because cysts crop up under a wide variety of hormonal circumstances. We might think that this would mean that the medical community recognizes the need for diverse treatment among PCOS patients, but actually it does not. Instead of considering the wide variety of PCOS needs, many doctors (especially those who are not endocrinologists) use blanket diagnoses and treatments for all of their PCOS patients.
The current understanding of PCOS is flawed in two major ways. First is what I just described above. The second flaw is a corollary of that nearsightedness: most members of the medical community (though there is a real debate getting off the ground) believe that it is impossible to have both PCOS and hypothalamic amenorrhea at the same time.
The belief in problem number two, ie, that HA and PCOS are incompatible, derives from the first problem, ie– the lack of a nuanced understanding of PCOS. PCOS is widely regarded as a problem of insulin resistance and being overweight. These are two significant factors that generate cystic ovaries. But they are not the only ones. Only 60 percent of PCOS patients are overweight. Some normal weight PCOS patients are also insulin resistant. Yet others still are not. What causes normal weight women to develop cystic ovaries? And what about insulin-sensitive women?
PCOS and Hypothalamic Amenorrhea: How to Be Different
Each woman needs to have two of the following three characteristics in order to be diagnosed with PCOS:
-Cystic ovaries, as detected via ultrasound
-Elevated male sex hormone (like testosterone) levels
-Irregular or absent menstruation
The thing is that these symtpoms indiciate that the process of menstruation is not completed properly. They indicate that there is an imbalance between male and female sex hormones in the body. The condition of excess of insulin and testosterone I mentioned above is one way to make that happen. It is, however, by no means the only way.
The dominant pathway by which women develop poly cystic ovaries is, again, that of the overweight woman. It is a fairly simple process:
1) insulin stimulates testosterone production in the ovary, and
2) excessive testosterone production throws a wrench in the menstrual cycle.
In PCOS, testosterone and female sex hormones become improperly balanced, and the rest of the menstrual cycle, which takes its cues from the rise and fall of estrogen levels, suffers. LH and FSH, two pituitary hormones that tell the ovaries what to do and when, are of particular concern. LH and FSH levels become dysregulated with dysregulated estrogen because they take their cue from blood estrogen concentrations. This is why the vast majority of PCOS patients have a reversed and high LH and FSH ratio compared to healthy women. The pituitary gland keeps trying to make the body ovulate, but it does not read estrogen signals properly, and the ovaries do not hear the pituitary properly. So these are the markers of the typical PCOS diagnosis: inverted LH and FSH, insulin resistance, overweight, and elevated testosterone levels.
Yet there are other means by which a woman’s hormonal profile can create cysts. One is hypothyroidism (which you can read about and it’s relationship with PCOS in the blog post here).
Today, the problem of primary concern for us is hypothalamic amenorrhea.
PCOS and Hypothalamic Amenorrhea: How to Have Both
HA is known by many to be exactly the opposite of PCOS. It’s a condition of hormonal scarcity.
If hormones are scarce, however, they can still be out of balance.
Most medical professionals consider PCOS a condition of excess. But it is in fact a condition of imbalance. PCOS arises when male sex hormones are elevated over female sex hormones in the body. This can happen when testosterone goes too high — as is the case with the “normal” PCOS patient (though there really is no such thing) — but it can also happen when DHEA-S, another male sex hormone, rises, or when estrogen, progesterone, LH, and FSH drop.
Hormone levels tend to drop in conditions of scarcity.
The body interprets stress, eating too few calories, exercising too much, and having too little body fat as indicators of starvation and scarcity.
Hormones can be imbalanced with the condition of scarcity in a number of ways. I list a few examples below.
PCOS and Hypothalamic Amenorrhea: Examples of having both
-A woman is really stressed out by work and life. While most of her hormone production plummets, her DHEA-S production (the top-of-the-food-chain hormone produced by the adrenal gland) skyrockets in response to HPA axis dysregulation. DHEA-S is an androgen, and it influences the development of cystic ovaries if estrogen levels are not equally as high.
-A woman is fairly healthy but has slept poorly throughout her entire life. This pushes her towards insulin resistance, but more than that it dys- and up-regulates her cortisol production. Cortisol signals to the HPA axis to decrease pituitary activity, and it does so. Her hormone levels all decrease. This woman’s predisposition to insulin resistance coupled with adrenally-induced fluctuations triggers the development of ovarian cysts.
-A woman is stressed out via the typical HA pathways–caloric restriction, excess exercise, and stress–so her pituitary hormones decrease in potency. Testosterone and estrogen levels are low but okay, and the woman is probably thin but may also be larger, depending on the degree of stress. Nevertheless, this time it is progesterone that takes the largest hit from the stress (taking it’s cue from both estrogen and LH), and menstruation can never occur without sufficient progesterone levels.
-A woman has a tendency towards insulin resistance, and is overweight, and then loses weight. While this corrects the insulin problem, the drop in estrogen levels she experiences from the weight loss (since estrogen is produced in fat cells) causes an imbalance in her predisposed-to-testosterone-production ovaries.
– Or a similar phenomenon occurs with leptin: In this case, a woman may be a bit insulin resistant, and therefore have a predisposition to testosterone production, but she does not test into a “dangerous” testosterone zone. Instead, her problem lies in the fact that she lost weight, and with it, she lost the potency of her leptin stores. During puberty, each woman’s body adapts to whatever levels of estrogen and leptin she has circulating in her blood at the time (creating a bit of a leptin “set point”). Later in life, one of these women loses weight. As she loses weight, and, significantly, if she is restricting calories or exercising excessively, her leptin (and estrogen) levels drop. The hypothalamus perceives this drop as an indication of a time of famine, and initiates a starvation response, primarily by decreasing the production of sex hormones. In this woman’s case, therefore, estrogen is low, and testosterone may be low to high, depending on the degree of insulin resistance and ovarian malfunction, but LH and FSH are both also low. She does not present with typical PCOS. She does not over-producde hormones, but, instead, under-produces.
-A woman has the MTHFR gene mutation, which predisposes her to high stress hormone levels, inflammation, and high testosterone levels, but which does not change her female sex hormone levels. When she experiences weight loss or a low body weight, it easily tips the body into a state of imbalance.
All that said, these are some examples of how typical HA problems can cause the cystic condition that is typically associated solely with PCOS. Stress, excess exercise, restricted macronutrient intake, restricted calories, and weight fluctuation can all contribute to cyst development. Many of these situations can co-occur, and that totally depends on a woman’s genetics, epigenetics, lifestyle, and diet.
PCOS and Hypothalamic Amenorrhea: Recommendations
The problem with having a poorly-nuanced understanding of PCOS lies in the way in which blanket recommendations are made for women with PCOS or HA. As a result of this mindset, I have been criticized for recommending that thin women with PCOS eat carbohdyrates. This is because those who are criticizing me believe that PCOS is solely a result of insulin resistance. I do not believe so. I believe that many women with PCOS do not necessarily have a problem with insulin resistance, and even if they do, it can be compounded by factors that lie outside of that typical diagnosis.
I would, then, tentatively recommend that women who are overweight and insulin resistant follow the typical PCOS protocol and under-take insulin sensitizing and gut healing steps. On the other hand, I would tentatively recommend that potentially under-weight and overly-stressed women with PCOS consider eating more, possibly upping their carbohydrate intake, and exercising less. Women with low thyroid would do well to correct that problem however they see fit. This is, however, particular to the individual, so please do not take my musings about PCOS etiology and treatment as prescriptions. Each woman’s experience of PCOS is unique and requires individual troubleshooting.
There are many different causes of PCOS, and it is rare for a woman to only experience one of them. The key to overcoming PCOS is to figure out what is causing your PCOS, and then experimenting with treatment options.
I have written an info-packed, multimedia resource for you, precisely to show you my method for overcoming PCOS with my clients. I also happened to use this method myself, as I was one of the women who has both PCOS and HA (But not anymore!). You can read all about that and get started on your own PCOS today.
Check it out here.
And what about you? What is your experience with PCOS and hypothalamic amenorrhea? I would love to hear about it!
Note - some links above may contain affiliate links. You don't pay more, but we get a small cut to help keep this organization running. It's tough to balance ethics with the need to stay alive. Thank you for your patience and understanding!
I’ve read all your posts on HPA and HA. I fall into the category of VLC eating and low body fat maintained for 2 year after 20 years of 4 pregnancies, birthing bringing up children and being overweight by up to 30 kilos more than I am now. I haven’t had a regular cycle for about 18 months, so based on yours and Chris Kressers advise I introduced more starches 200g a day, sleep 8-10 hours and stopped exercising. Still no period!! So I am wondering if my hormones are trying to adjust to the new “setpoint” you talk about? Will it just be a matter of time for my body to adjust to the new reality? I hate that my body thinks it is in famine and sends all these signals to my hormones to stop reproduction! Are there some supplements that may support the T3 and T4? Or do you have any other suggestions? Thanks and keep up the good work!
Before you start working on the T3/4, I suggest getting bloodwork done. If the T3 remains low, you can pretty safely supplement T3. Something else you could do is supplement with kelp, so long as you know that you do not have Hashimoto’s thyroiditis (since iodine can aggravate the thyroid in that case).
And yes– I would give it time. This is my understanding: in 20 years you had 4 children and were overweight, and you have recently lost weight and are eating VLC. Definitely adding starches will help, but so will putting on weight, if you hoping to bring up your estrogen levels. Not up to your previous levels, no, but if you are eating deliberately to maintain a certain body image, that may be impeding your body’s natural drives to have some healthy fat in storage– which most bodies that have been historically overweight need more of than women who have historically always been rails.
Thanks Stefani I will get the blood work done, I do eat kelp and seaweed everyday in my bone broth. I too am worried about loss of bone density and being at risk of other health issues a regular cycle protects us from. I have no idea where my cycle is at, will I need to make sure my bloods are taken day 2-5? Are there any side effects from taking T3 & T4? The last time I went to my Gyne about this, he just whacked me on the pill, now I know why, it brought on a regular period, but I felt like crap and stopped taking it. Again you are a voice in the wilderness, thank you!!
Thank you so much again, and especially about this post! I had exactly that scenario where progesterone takes the biggest hit. Too much (hard) exercise, loo little calories, zero carbs. Cortisol was mile high (saliva testing). Had a RT3/T3 problem that is now about fixed after taking T3 for six months. That brought back my period. But now I’ve changed it into Thyroid Erfa (same as Armour) which contains also T4 and no period since 🙁 Should I just change back into T3 only?
I have also been supplementing DHEA from last fall (started same time as T3). I run out of DHEA in February and forgot to pick up some more. Then in April my weight FINALLY (after 2,5 years= started to go DOWN! I was over the moon. Then I realized I hadn’t taken DHEA and got some more and started supplementing again. The weight went up again. Blaaaah.
What should I do to make progesterone work again and maybe I could give up DHEA? It was never really low, just at the low end of the spectrum. And I did have low testosterone etc. (hypothalamic amenorrhea) and also cysts. Didn’t have them any more after having several (maybe 4) periods. Took progesterone twice (last fall and this spring) for one day which started the period both times. Other times got my period naturally. Never had any PCOS issues such as excess hair et cetera.
Weight went up 2,5 years ago due to the heavy stress but this year I’ve finally managed to incease my carb intake (starch, fruit et cetera). Also reintroduced dairy which I love! (quark, cottage cheese, cheese, yoghurt). I also tried gluten two times with no consequences so I’m definetely giving up unnecessary paranoia regarding food 🙂 Doesn’t mean that I would eat gluten regularly but means that there’s nothing I should be too concerned about. I LOVE IT.
Anyway, sorry for the long post (again), but would you have any suggestions?
Well, I just ditched the DHEA… We’ll see. Would like to get my period tho 🙁
Hmm, I read this Wikipedia article about progesterone and it suggests that eating milk products provokes progesterone secretion, could it be true? http://en.wikipedia.org/wiki/Progesterone
If a woman is being tested for HA or PCOS (or the doc is using blood work to determine which of the two is causing absent periods), it is VERY important for the blood work to be taken on day2-5 of the menstrual cycle. Many GP’s and even gynecologists don’t know the importance of this and don’t think it’s possible to do in a woman who is not menstruating. If a woman is not menstruating, a period should be induced using progesterone/provera and/or an estrogen progesterone combination pill(in the even that estrogen is too low to induce a period with the use of progesterone only). The hormonal profile for the diagnosis of PCOS is based on the levels of FSH, LH, estrogen, progesterone and testosterone on days 2-5 of the menstrual cycle. Random blood work WILL NOT DO.
This is really crucial. Unfortunately, I was misdiagnosed with “thin” PCOS in 2005 because the gynecologist I was seeing at the time used random blood work to diagnose me. All my blood values were “within the normal range” but because my LH:FSH ratio was similar to that of women with PCOS, I had undeveloped follicles in my ovaries, and absent periods, she diagnosed me with PCOS. Her “treatment” for me was to lose 10% body weight, eat a low carb diet and exercise daily. This would be fine if I had PCOS, but I didn’t. It wasn’t until 2010, after 5 years of fighting with doctors that I didn’t have PCOS, that I met with a gynecologist/endocrinologist who knew what she was doing, did the proper blood work and told me I’d never had PCOS, I had HA the whole time. Unfortunately, I suffered some minor bone density loss from the 5years I spent trying to lose weight, eating low carb and exercising in order to try to rid myself of PCOS(which I didn’t even have).
Anyway, I want my story to be a cautionary tale for other women. If you have been diagnosed with PCOS but the blood work wasn’t done on cycle day 2-5, fight until you can get the proper blood work done.
excellent point. Timing of the cycle is in fact crucial for understanding what a woman’s hormone levels. That’s so unfortunate that happened to you… I am so empathetic and so sorry.
I have learned more from your blog than I have from the 4 doctors I have seen for all my problems! Thank you, thank you!!
It is such a relief to find this information.
Ahhhh, thank you for this! I am one of the “thin cysters” that has insulin resistance but also has bottom of the barrel estrogen. I developed PCOS after being significantly overweight (190 lbs) then dropping to 114 lbs in about a two year period via disordered (vegan) eating and obsessive over exercise. Enter PCO. I currently eat paleo and still work out 5-6 days a week but have been doing VLC. Based on your suggestions I am going to start incorporating more carbs into my situation. Around the same time that the PCO developed, also developed night eating syndrome… to put it bluntly, shit’s been complicated. Obviously there is a lot going on at once.
My body doesn’t respond to estrogen supplementation. Meaning, my doctors had me at twice the highest recommended dose of Estrodial and my body just wouldn’t increase in levels after several months. Luckily I have a new endocrinologist who is a specialist and asserts that there is a “stress component” to my situation, especially since my E levels, which had gone up a tiny bit, plummeted down again after a strict Whole30 and daily exercise to lose 8 lbs that he wanted off my midsection. Sigh.
I love that this site exists. Thank you. I feel so alone, and so frustrated in this disease and in how complicated it’s turning out to be. Nothing is seeming to work, and I feel like I’m living in a world of contradictions: I’m told to eat perfectly and exercise daily to lose the tiny bit of weight(5 lbs or so) that are left in my midsection, so I crossfit or work out 5-6 days a week, and this is effective for weight loss, but only to a point. But I’ve always slept like shit, and I’m a law student, so I’m over stressed and this leads to more PCO problems–> more weight gain. It just feels so lose-lose sometimes. Meanwhile, I haven’t had a natural period in 5 years, and now my body doesn’t even respond to estrogen supplementation to induce a period.
Mostly I just want to say thank you for helping me feel like I’m not alone in this. It is scary and challenging and hard not to feel “broken” when you have doctors telling you thinks like “your womb is like Sahara desert.” It’s really nice to know that others out there are also experiencing similar situations to mine.
More carbs, more food, more forgiveness, and love. 🙂 More nourishment from all angles. I totally understand the stress piece– more than you could possibly imagine. I have been considered for in patient therapy because of stress.
All of which is to say, I too am not the only one. 🙂 And I welcome you here and invite you to share in as much camaraderie, suffering, and joy as we can provide. 🙂
I think the medical community puts too much emphasis on obesity–blame the patient. I believe the majority of women with true PCOS start out thin but with significant insulin resistance. The obesity comes later and is an effect of PCOS, not the cause.
I suffered severe PCOS symptoms and infertility at 110 pounds. Weightloss was the last thing I needed. Treating insulin resistance had an immediate and positive effect when I weighed 150 lbs. no weight loss required (although it happened once the insulin resistance was treated)
Janknitz, how was your insulin resistance treated?
Hi Stefani, I’m coming at this with HA and no PCOS and am in the throws of infertility. There is a large contingent of women that say weight gain and reduced exercise is the cure for HA (http://www.fertilethoughts.com/forums/lifes-journey/343535-hypothalamic-amenorrhea.html) and they have a whole bunch of babies to prove it:) But there seems to be another community that says weight gain is not the only factor–leptin sensitivity must be addressed and resolved. (http://jackkruse.com/primal-cpc-2-eating-disorder-etiology/ and leptin resistant diet.) What say you? My endocrinologist says IVF is the answer. I think that’s like killing a fly with a hammer. Thoughts? Besides just eating to gain weight, what would you do?
🙂 I think BOTH. If you are thin, however, you are probably reasonably leptin sensitive. I think the best thing you can do for leptin sensitivity is to eat three square meals per day– making absolutely sure they are calorically sufficient– and honestly, err on the side of over rather than under eating. The other things for “leptin sensitivity” such as low carb and fasting are a no-go for women with HA, in my opinion, as those are both starvation activities… useful for some cases of metabolic derangement, but not ones which have already been damaged in the starvation-like manner.
In sum: Do not graze, Don’t do ANYTHING that might starve or stress your body, Breathe. Repeat 🙂
I’ve never commented before, but I’ve been reading your blogs (/paleohacks comments) for many months now, and I’ve listened to your recent podcasts (love them). I just wanted to thank you for everything that you do. Your honesty and modesty are so valuable to women who are fighting the near-impossible battle against biology, disordered eating, and social pressures. Thank you for digging deeper into your own issues on a public forum so that other women can be inspired to delve deeper into themselves. I am one of those women, and you have certainly helped me help myself – in many ways.
Please do not stop.
Im blessed beyond measure to have stumbled upon this. I have been having severe digestive disorders for the past 3 years, mainly constipation. My blood work just showed I have a slow thyroid and not enough t3 with high levels of testosterone. I’ve been eating paleo for the past 2 years and my severe constipation and bloating has not diminished. I just started taking Triiodo-l-thronine 10mcg. No one ever told me that my diet and excercise regime correlates with this. My doctors say they can’t diagnosis me with PCOS just yet because my symptons dont qualify. I have severe constipation, bloating and food intolerances and I am at a healthy weight and BMI. They say I do no fit the profile. You say you reccommend PCOS women to eat carbs, do you mean carbs as in brown rice and potatoes? Again, I can’t thank you enough for all that you do. I pray I can get better soon and this will all be in the past. This way I can become more educated and help other women suffering.
Yes, more or less. I prefer white rice to brown rice (the bran being the source of phytonutrients). Should help at least some with the thyroid, though of course other issues may always be at play as well.
Awesome. Thank you so much for the reply. It’s truly appreciated. I forgot to ask besides rice and sweet potatoes, should I be adding oatmeal? Thanks again. You’re a world changer!
I am so happy to have found your site! The PCOS posts are amazing – the best I’ve read. I, personally, don’t suffer from PCOS, but endometriosis. Could you ever do some posts specifically about endometriosis? I have been strict paleo now for almost a year and I’m still dealing with 1-2 moderate pain days. I’m trying to be totally pain free – no surgery – lifestyle changes only. I started thin and am still thin. No food issues. Started supplementing iodine which seems to be helping. Anyway, I would be so happy if you wrote a bit about endo!
It is so wonderful to see some different points made about PCOS. I often feel totally alone in this battle. I am have pretty severe PCOS and at 5’2 and 97 lbs was told by my RE that I needed to diet and exercise. I am IR, I because so after developing gestational diabetes with my daughter and after giving birth it never went away. I follow a pretty strict grain-free and sugar-free diet to control my blood sugar and am desperate to have another child. If it were only infertility I were dealing with it might not be so depressing, but with excessive hair loss, acne, etc, it is even more so. No doctor has ever given me two seconds of consideration as I am not obese, and usually they give me two options, to get on birth control pills or to use fertility meds, and of course diet and exercise. My thyroid was 1.87 when I last had it taken, so I don’t think that is an issue. I do believe I have very low levels of estrogen, as my uterine lining does not thicken without medication. However, I do always seem to have higher than normal LH as I always have lines on my OPKs, regardless of ovulation. Any suggestions you have for me would be greatly appreciated. WIthout progesterone/estrogen I would probably get a period perhaps 2/3x a year.
I will continue to check this site, and again, thank you so much for your attention to this very frustrating and persistent issue.
YES. You may be IR, which makes high testosterone a potential problem for you — but I think more important, honestly, is the extraordinary low body fat. Your estrogen levels are in the basement for the precise reason. You may be IR partly because your body is so desperate to hold onto fat.
When I put on weight, my acne went away. Acne is a cause of an estrogen/testosterone imbalance. Remember– PCOS is a problem of an imbalance. If I were you, I’d recommend eating LOTS and putting on some weight. Do it as gradually as you feel you need to, but if you want to ovulate and menstruate, in my opinion, that is absolutely the right step to take.
I was diagnosed with PCOS back in 1999 and it took me years to figure out how to eat and actually live with it (exercise, etc). Though I have my weight under control and ovulate monthly, I still have other nagging symptoms that I hope Paleo and other changes in my health can deal with. Thanks for writing this!
Just found your blog via MarksDailyApple. My periods have been irregular since I began menstruating, having heavy periods every 3 months or so. Several years ago I went on birth control to ‘regulate my cycle’ came off of it, had a few heavy, painful periods and went back on for almost a year. I learned about the Paleo diet in March 2011 and fully committed to it and ditched the birth control a month later. If I remember correctly I had one period the following month, but have not had one since. After visiting two different gynecologists this is the information I have gathered: An ultrasound shows strings of cysts in both ovaries. I do not experience a withdrawal bleed after taking Provera (twice attempted). My blood work, which was obviously taken at random, came back ‘normal’. I am 5’7” approximately 128 lbs, no acne. Both doctors recommended birth control as treatment. Trying my best to avoid ‘treating’ a problem without knowing the cause of it. Any insight or advice would be GREATLY appreciated. Thank you:)
Yeah. Blood test results would help a lot. What are your LH and FSH levels? If low, that means that your hypothalamus is detecting starvation / and/or stress, and needs to be gently swaddled with lots of food and relaxation techniques. If you are insulin resistant and have high testosterone, that may indicate a need to lower insulin levels. And your estrogen? But usually a lack of menstruation after taking provera is linked to a hypothalamic issue, at least so far as I can tell.
Do you eat carbohydrates? If not, I’d recommend it. Did you lose weight on paleo? That may have exacerbated HA if you’ve got it.
Thanks so much for the response,
LH is a 6.3 and FSH 6.7. Free testosterone is 0.5 and total testosterone 27.
I eat carbohydrates in the form of lots of vegetables (occasionally sweet potatoes) and some fruit. I didn’t initially lose more than 5 pounds on the paleo diet. My weight has fluctuated over the years… my highest being 147 and lowest 116 over the course of three years.
Your profile sounds just like mine. Since I see it’s been a couple years since you last posted, would you mind updating me on the progress you made and any insights you learned since posting?
i have a free testosterone
I have been praying for about one year now for someone to describe what I have. No doctors would agree, and I have been to every type of hormonal specialist out there. I have gotten a lot of good information, but starting crying my eyes out when I saw the part that, “As she loses weight, and, significantly, if she is restricting calories or exercising excessively, her leptin (and estrogen) levels drop. The hypothalamus perceives this drop as an indication of a time of famine, and initiates a starvation response, primarily by decreasing the production of sex hormones.” This is me. Everything you mentioned about that is me. I have not been able to cure is and it is taking away from my life and I absolutely hate it. If you have any recommendations I would appreciate it more than you would ever know. I do not have low body fat anymore, I am probably “regular” weight for my height, I think my body is still in starvation mode from the calories I cut and the amount of exercise I was doing. I don’t know what I should eat, when I should eat… etc. Any type if help would be amazing. Because your article was an answer to my prayer.
Time, patience, love, erring on the side of over rather than under- eating. I advocate three meals a day, and eating As Soon As you feel hungry, if not before. Stress reduction is huge. sleep. Do NOT restrict carbohydrates or fat.
I am curious about why your doctors do not agree. Have you had bloodwork done? That would be super telling about what your problems may be. right now I am just presuming you have simple hypothalamic down-regulation.
It takes a long time to get it back, and even though you are a normal weight, your body might at the outset want to be a bit higher than you are now for reassurance. Or maybe you just need to be at a higher weight, even higher than what you are considering “normal” (you may be right, but you also may be sneaky and pretending you are normal when you are still on the lower end 🙂 — trust me, we all do it). Many women who are recovering from anorexia/HA experience weight gain and then a leveling out. On the other hand, some start menstruating as soon as they hit a healthy weight.
I’d give it several months, and even longer, depending on how stressed you are. Nourishment is key, relaxation is crucial.
I’ve heard some women have success with Ray Peat’s protocol (google!). His diet emphasizes energy availability– prioritizing fruit and dairy, interestingly enough. But I haven’t experienced or worked with it myself, so I can only recommend that as a diet/lifestyle to contemplate for you.
Check out the hypothalamic amenorrhea posts over at http://fertilethoughts.org, too, to get a better idea of what women with HA deal with and how they recover.
I just saw your response. Thank you for replying! Yes I did get blood work done multiple times. I also have done a saliva and urine test. I guess I just haven’t really gone to that great of a doctor (or at least it seems like it) My test results flat out said PCOS and they just ignored it went to treat my adrenals first… which helped a little but I still have PCOS…
I REALLY REALLY appreciate all your advice and what you had to say.
I really need to try and lower my stress rates it is just so hard to do it. I have gone to multiple counselors and therapist. I am just so stressed about my body and working and I just keep gaining weight no matter what I do or no matter how healthy I eat. It’s depressing.
Thanks again for this article and your response.
All of my life I think I ranged from 135-145, 5’6″ and around a size 6-8. My periods were always really heavy with really bad cramping and usually lasted 35-40 days and I had an acne problem that would not go away despite trying every product imaginable.
I never went on birth control because I didn’t like the idea of taking a drug and my husband and I were always very careful. When I was 24 I applied to pharmacy school and got accepted. This was when I started having anxiety attacks. In order to get through this time of my life I went on venlafaxine (effexor XR) and to tell you the truth, the effexor saved my life.
I started school and I was stressed, but my anxiety was controlled and I was happy. In my second year of school I started a new exercise regimen, INSANITY by beachbody.com. I loved it! I lost weight and got really strong. I started logging my food and seeing really drastic results. My lowest weight was 126 and I was all muscle. I felt great, looked great and my periods had never been so regular (every 34-35 days)! I still had a heavy flow and cramps but they were no where near where they used to be.
I started backing off on the exercise when I got into my 4th year of school because I had to start clinical rotations. I started getting stressed again and I was afraid of gaining weight because I wasn’t exercising like I used to. I think this is when the disordered eating really came to the forefront. I weighed and logged everything I ate and would be ok for about a week until I bindged. I would flucuate between times of restriction/bindgeing.
At this time I also started thinking that I really wanted to get ready to have a baby and weaned myself off of effexor in Dec 2010. I did pretty good with it and was able to keep my anxiety under control (occasional manageable panic attack). I had my last light “period” in Jan of 2011. Interestingly in January I started my last clinical rotation that was very intense and completely stressed me out.
From Jan 2011 to May 2011 I tried to figure out my cycle but I never got a period and also my acne completely went away. During this time I was studying for my boards and started my first real job as a pharmacist (A job that I hated!). In May 2011 I finally went to my ob/gyn. My T4,TSH, testosterone and prolactin were normal. My FSH, estradiol, and progesterone were low. They gave a script for progesterone and told me to call them when I got a period….I never got one. So they gave me clomid. I did 2 or 3 rounds with no success. I did get a light period on it, but nothing like I used to.
At this point studied all of my books and it seemed to me that my labwork fit under the “hypothalmic amenorrhea” category. However I was confused since at my lowest weight and exercising the hardest I was the most regular I had ever been in my life! Despite that, I stopped exercising and tried to control my eating but I still suffered from the restriction/bindgeing. I was in my first job and didn’t like it and I was stressed out from the infertility. I still wasn’t getting pregnant so I decided to go to an infertility specialist in Sept 2011. At this point I weighed around 134 and my lab work showed A1C 5.2% and a normal thyroid. Upon ultrasound he diagnosed me with PCOS!! I was flabberghasted! PCOS did NOT fit in with my weight/lab profile. He said I was not a typical PCOS case and did not give me any reason how I got this way but said he would treat my infertility as if I had PCOS.
I did a couple more rounds of clomid and then femara, no results. I had many follicles/cysts on my ultrasound but I was not ovulating. The follicles would just hang out in my ovaries and get bigger. In May of this year I started my first round of injectables and then artifical insemination. My estrogen levels were so low despite meds that I don’t think my follicles were able to mature correctly despite having many big follicles on ultrasound. In fact my ovaries got so big and overstimulated that I had to take a month off and go on birth control to “quiet them”. My diet during that round was not great. I drank a ton of diet soda and ate a lot of sugary foods. I decided that since the round didn’t work I needed to clean up my eating.
I came across the primal/paleo lifestyle in Jan of 2012. I tried the primal diet then but I only stuck with it for about a month because of the fat (calories!!!) and the sugar restriction (I LOVE to bake and eat cookies!!!). I have been having constipation issues for awhile now (hemmorhoids and mucous in my stools) and I found that during that time my bowel movements became regular (but still no period). After my failed artificial insemination trial in May I decided to try paleo again in June. It has been a rough road, but I think I am doing pretty well. I am still weighing and logging my food but my bindges are not quite as often and I have been able to stay away from non-paleo food during my bindges. Since my sugar consumption is so low I dont have those intense midday hunger pains. I feel really good and I am not bloated like I used to be. My bowels are not completely regular but I can tell my digestion is getting better. I am currently 5’6″ and 127lbs.
I have been reading every paleo book, blog and podcast I can get my hands on. However there are so many different variations of the diet and conflicting evidence on many foods. I have PCOS but I am not the “typical” case. I dont know if I should restrict my carbs or eat more of them. What about protein, nuts and fats? Do I need to supplement? What about iodine? I know that I need help with my disordered eating but I am so afraid of gaining weight. However I still did not get a period when I weighed 138 and stopped exercising.
Sorry for all the information but this is the first time I acutally wrote out my story and I wanted to give you all the details. I really think you have some great ideas and I would be interested to hear what you think about my journey. Thank you in advance for reading through my life story and for any help you can give me!
Nourish yourself. It seems as though you put yourself under a lot of restriction and stress. I cannot emphasize that enough. Do not sweat macronutrient ratios– try to eat at least a moderate amount of all of them. And err on the side of over eating. And sleep as much as you can, and perhaps exercise less. I might listen to the podcast I just recorded over at Balanced Bites if I were you, since we discuss many of these issues at great length. 🙂
I am 31. I was diagnosed with PCOS when I was 24. I have been through every test, diet, hormone therapy, medication etc imaginable. I present with the following: ovarian cysts, weight gain and extreme difficulty losing it, hair loss, fatigue, cystic acne, headaches etc. What I DON’T present with: irregular cycle, thyroid abnormality. At the time of diagnosis and during different time periods over the past few years I’ve had test results show that during part of my cycle my estrogen is almost non existent and then it flip flops and my progesterone becomes non existent. For this my endocrinologist has me on bio identical hormone therapy (progesterone) during ovulation. No matter what I do to my caloric intake (stagger, raise, drop to 1250 a day etc all with no more than 50g carbs a day) I still have extreme difficultly losing weight. Last October I went paleo and while I I had numerous positive effect in my well being and I did lose inches, in over 6 months I didn’t lose a pound. It wasn’t until my doctor put me on metabolic stimulants (adipex) that I would lose. I also retain excessive amounts of water. And even with the stimulants, my weight loss was slow and inconsistent. I currently weigh 161- I am 5’5 and according to most charts, small boned. I am muscular and build muscle fast, but I shouldn’t weigh this much. Have the apple figure with large breasts, upper arms and a tummy. I feel like I’ve tried everything and I see one of the best endocrinologists in Los Angeles. It’s the most devastating thing I deal with- feeling like I struggle constantly and see minimal results. I also workout 5-6 days a week (yoga sculpt, strength training, circuit training, spin, pilates). Any thoughts? Anything at all you think may help me I’m willing to try! Oh, I am also on the following supplements: Krill Oil, Vitamin d, B12, biotin, magnesium, herbal water retention relief and herbal cycle balance.
A few things I forgot to mention: I also have endometriosis and typically painful/ heavy periods although that has improved with Paleo eating. The acne is mostly under control now (it was only BAD when I was first diagnosed) but I still get a cystic breakout (minor) on rare occasion. It’s really the weight gain/ inability to lose that is the most difficult AND the fact that I still get ovarian cysts in spite of everything.
STRESS. perhaps– that seems the biggest obstacle from what I read in here. Honestly. But there is SO MUCH about health that I do not know and that your doctors would know better— there’s no way I could make a recommendation. If you’re looking for assistance, I think perhaps I might refer you to whole9, http://www.whole9life.com – though they would recommend you off of stress and that you increase your caloric intake (and carbohydrate) as well.
I formerly had HA and was helped by the community on the fertile thoughts board. After following hundreds of women going through the same thing, the message for fixing HA is fairly simple: Gain weight, do NOT restrict type or quantity of food, and cut exercise. The faster you do it the faster you tend to regain your cycle. One thing worth mentioning… you don’t have to be excessively thin to develop HA. You can get it through overexercise or through restricting your diet (like eating no fat) even if your weight is fairly normal. Another important point: Many girls with HA do have to go beyond a weight/BMI that “normal” women need to cycle. This can be a major source of frustration as we see thinner women getting pregnant, but most women with HA who stick with the weight gain can regain a cycle and almost all the women on the fertile thoughts board have gotten pregnant either naturally or through assistance like clomid/injections. The medical treatments also tend to be much more effective once women have made the “lifestyle” changes with diet and exercise. Good luck to all!!
I endorse all of these recommendations. A+! 🙂
Hello. I’m 20 . 5’6′ 120lbs .
My periods started when i was 15 (doctor said that it was late).It was really heavy periods and very irregular. I had menstruation maybe once in 2-6 month , sometimes I had it every month, I had an awful acne on my face and was overweight. I was 150lbs .
I started losing weight when I was 17 . just removed junk from my diet , stopped eating millions of carbs and lost 10-15lbs . Then I started having periods once in a month and was very happy but I still had acne at 17 , that was bothering me, anyway, then my periods just stopped, I didn’t have it for 7 month and came to the doctor, they took a blood test i had LH : FSH about 2:1 , everything else was normal in my blood test (estrogen testosterone T3 T4 .. something else.. i can’t remember now) i was put on a birth control pills for 3 month (Yaz) I didn’t have an acne during taking pills, after quitting I had normal LH : FSH ration , i got ultrasound , my doctor said that i had ovarian cysts , then i took every hormone pill this world knows, and I literally went crazy while on them , my back hurt , heavy periods, acne was back, nothing seemed to work , one of my latest blood tests was fine except FSH , that was really low on 12 day of the cycle.. and my doctor said .. “hmmmm something isn’t working”, thanks doc! i said and decided to go back to birth control pills , i was really tired of spending lots of money at this private clinic ( i’m from Russia, health insurance doesn’t cover it, blood tests are very expensive) so i was on birth control for about 1,5 years and didn’t care much about it all, i was working out, eating about 100-150 carbs a day ,very low fat ,and always in caloric restriction, 1300kkal maybe .. I’ve lost more weight , but few month ago I found out about paleo . Something weird has happened while i was on 2nd week eating paleo . I had a period on a 14th day of the cycle ( I was still on birth control pill) and so I decided to quit this pills.I haven’t had a period since then . it was about 1.5 month ago . i’m currently eating eggs, meat , vegetables , some fruits. I used to be heavy dairy eater my whole life, but a few weeks ago I’ve read an article on this blog about PCOS , and ditched dairy, goitrogens , caffeine (btw I’ve never eaten soy in my life , we don’t eat it in Russia). i’m working out 3 times a week ( full body workout with weights ) + cycling on a very low speed or swimming couple times a week, i don’t train very heavy and i don’t have any stress in my life, really :))
so i’m asking for your advice. what should i do now? try low carb and see how it works for a couple of month and if it doesn’t work should I introduce some starches to my diet and how much? talking about starches , there is no paleo starches except white potato, which I hate, no sweet potatoes, no yams so my question is , will beets carrots bananas work as starch source or they are very low in starch ? thank you for your reply! i really don;t want to take any medications , i hope to help it with a diet . i heard that there are some herbs that help .. vitex etc .. what do you think about them ? thanks again . sorry for my english
Yes, those work as starches. Rice, too, and all fruits are good carb sources. I think that is a good plan. What you may need is just time to heal and for your body to become comfortable at its new weight and eating pattern… making sure that you get enough calories and enough nourishment. Also make sure to eat in meals– 2-4 usually– per day.
thanks for your appreciation of my plan 🙂 i’ll stick to it
Hi, I just came across this article and believe I fall into this category. For the past 3 years I have limited my calories and controlled me food, and I also started running long distances (7 half and 1 full marathon since 2010) and was working out 5-6 days a week fairly intensely. I went off the pill in October 2010 and never got my period back. I was not concerned till a year ago when we wanted to start a family, since the start of this year I have had numerous tests with all sorts of doctors and have found that I have PCOS (or at least cysts), low-normal estrodiol, low progesterone, and high testosterone. My thyroid labs have all come back perfect though. Then about 2 months ago I also started having all sorts of concerning symptoms relating to anxiety. Which has had a huge effect on me. I have decided that I needed to change my lifestyle in hopes I can regain my period and one day get pregnant. For the past month I have only been walking and going to yoga and have stopped all restrictive eating. I am really hoping a few months of this helps! Any other thoughts?
Hi! I absolutely love your website, and the post about the difference between PCOS and PCOS in women with HA was so extremely helpful to me. I was wondering in your experience do women with lean PCOS and HA do better conceiving on Clomid or Letrazole.
Any info would be much appreciated. Thanks!
I’ve just been diagnose with pcos im only 17 but am possessed with losing weight I’m now about 8st 2lb. And have BMI of 18.5 but my docs don’t think my bad or lack of eating habit has anything to do with it is this right? I also have painful intercourse which apparently is no part of pcos I done some research and I think I have endometriosis but my doc says she’s sure I dnt as it generally don’t occur in young girls. ..what do I do its ruining my life with my boyfriend I feel like im old and moany nothing like the teenager I shud be
Omg, I think I’m in love with you 😀
This is the kind of articles that I’m searching for…really informative, and above all I like your intention to be objective.
I’ve read so much about nutrition and diet, from all different viewpoints, low carb, high carb, raw eating, high protein, low fat, high fat, high this, low that 🙂 . And they all have one in comment – they sound like a preachers of their food religion 🙂 So, this is so refreshing and so informative. I wish our doctors are that much informative.
You criticize doctors for blaming (only) obesity and insulin resistance, but unfortunately in my country they haven’t even get there yet. Here, PCOS is still something that is only “treated” with contraceptive pills, like Diane35. I’ve PCOS for 12 years, i.e. from puberty but I’ve heard about insulin resistance few months ago for the first time. grrr..
Just so you know, you’re helping people all over the word 🙂
When I was diagnosed with pcos I was normal weight (nor obese, nor skinny), and kept it normal for last ten years. I was never obese,although now I have about 7-8 kg extra (that’s about 15lb I think). My biggest problem with pcos is excessive male pattern hair, and very rare periods (with ovarian cysts of course).
When I first heard about insulin resistance I thought that’s my case, since my mum is diabetic, and we always have eat a lot of bread and stuff like that. I rarely exercise and I guess I have high body fat, (but though, not so much on a belly, more on my backside and hips).
I was planing of switching to paleo diet these days(with some exercise), but now when I’ve read this article, I’m not sure if that’s a good decision since I have a mild hypothyroidism. But I’m not sure if that caused PCOS or PCOS caused hypothyroidism, since I had problems with ovaries few years ago before I started to have problems with thyroid.
Do you have advice maybe for me? Could paleo diet help me or it’s risky because of thyroid?
P.S. Sorry if my English is not completely correct, It’s second language to me 🙂
I think a paleo diet can be helpful for both hypothyroidism and for PCOS. Its probably best to focus on gut-healing foods in this case for you, since both hypothyroidism and PCOS can be helped by soothing our guts (and, also, we don’t know what your hypo is from and might be hashimoto’s). To make sure you are supporting your hypo, just eat plenty of carbohydates (however many you feel like each day) and have some seafood in your diet.
Thanks for your great post.
I have been struggling with weight gain, hair loss, fatigue, brain fog, and menstrual irregularity since March of 2012. After many doctor visits I was finally diagnosed with subclinical hypothyroidism (low t3, low t4, high RT3) and candida. I have been on t3 and t4 since October of last year and have been candida free for a while now. I have been on a gut healing protocol since February of this year and am doing well. In February I also stopped the BCP and opted for a copper IUD since I was still not getting regular periods even on the BCP.
I have continued to gain weight on the hypothyroid meds even while eating 1500 cals a day and working out 6X a week. Most of my weight gain is centered on my lower body and back of arms.
I had a full day 3 hormone panel done and the doctor said that even though the labs were semi normal that I still might have PCOS.
I am very confused and really don’t know what to do. I don’t eat completely paleo but stick to real food and eat about 75 grams of carbs a day which come from veggies.
My FSH was 5.2 (range 2.5-10.2), my LH was 1.5 (1.9-12.5), my prolactin was 6.7 (3.0-30.0), my free t4 was .6 (.8-1.8), my estradiol was 39 (19-144), my total testosterone was 40 (2-45), and my free testosterone was 1.3 (.1-6.4).
The doctor forced a period by progesterone withdrawal. I have not had a period since. I am 39 years old 5’5″ 135 lbs about 21% body fat.
Any advice you may have is greatly appreciated!
I can’t think of anything off of the top of my head, Elizabeth. My best idea is that your body is just recovering from BCP, but that depends on what your experience has been with that. Chronic infection (as you indicated with candida) might be to blame and might just take time to heal. Extreme exercise and restriction could be a problem, perhaps. Stress is always an issue. What is your carb intake like? Too high or too low could both be problems.
I hope people are still reading this board. I’m in desperate need of the name of an endocrinologist in the L.A. area who will not dismiss my symptoms and test results, and work on treatments for me. Doctors at my HMO have dismissed me at every step despite having abnormal thyroid, hormone, insulin and other test results. I’ve been told at various times I have PCOS, endometriosis, hypothyroidism, but have pretty much been told that if I have PCOS, I have it, and there’s no treatment for it other than BCP. I’m 37 and desperate for health!
p.s. Someone posted last year on this board about how they’re seeing one of the best endos in L.A. I’d love that and any info on recommendations for endos and/or OBGYNs in L.A.
I’ll let you know if I hear anything, but unfortunately I’m quite out of the loop there. Have you tried checking through Robb Wolf’s Paleo Physicians network?
Hello Stefani, if you could please shed some light on what you think my situation is. Diagnosed with PCOS 5 yrs ago. 5’5 195 not insulin resistant, low testosterone, estrogen normal, low progesterone & taking synthroid for Thyroid, Metformin, 0.5 Dexmethasone at night all pills taken for the last 5 yrs & still ovaries look like gourds with cysts. Symptoms of facial hair, low libido, no weight loss even with low carb. I lose inches never pounds. How can I have PCOS if no insulin resistance, low testosterone but do have facial hair, oily scalp, bad acne, low libido, no weight loss. Also retain water bad. Its so confusing!! HELP PLEASE!
Hi – Awesome post! I’ve dealt with HA for the past 10 years every time I stop birth control (been on it since age 16, now 30). Upon stopping, no period and I slowly gain weight without changing my diet. I’ve always gone back on the pill before regulating my period and then the weight comes off. This past year, I went off the Nuvaring and encountered the same scenario. I was 142 lbs, 5’7″ at the time. (In the past I’ve been as low as 130 on the pill) It was a roller coaster of a year, my weight went up to 153, no period in sight. I started having thyroid issues, gut issues, adrenal issues, hypoglycemia. In March, I went back on the Nuvaring, not wanting to deal with it all since I’m not ready to conceive. Unfortuantely, I felt even worse on the contraceptives. I took out the Nuvaring 4 weeks ago and I ovulated and my period came, exactly on time! The one true cycle was so exciting for me, I hope it wasn’t just a fluke of coming off the hormones – although in the past my hormones have always been WAY too low coming off the pill to cycle, so something is different. In the past 6 months , I’ve also been working with a naturopath who has helped me focus on whole foods, testing for and elminating food sensitivities, exercising less, and slowly eating more. Issue is, I am not comfortable at this higher weight (152, 5’7″). I am eating TONS and hardly exercising. I”m getting married next summer and want to feel my best! If I go slow and steady a calorie decrease, will it be possible for me to lose a little weight and keep my hormonal balance? Nothing drastic, maybe 5-10 lbs? Thanks!
I found your article very interesting. I was diagnosed with PCOS and possibly HA. My BMI is very average, I am not overweight or underweight, I eat decently and do not over-exercise. I do have low estrogen. I am frustrated with the diagnosis, because its a term just thrown around and wish I could have more of an understanding of why I do not menstruate. any thoughts or experience with someone in my situation, that does not easily fall into any of the categories you describe in the article?
Hm, yes. More saturated fat, less stress? Less exercise? More sleep? Cut back on leafy greens if you consume them liberally? Cut back on fiber to increase estrogen retention?
Hi Stefani, I just came across your article and found it very helpful. I have been through a horrible experience the past year with fertility treatments. I went off the BCP and did not get a period (did menstruate regularly before going on the pill). After a few months I went to the OBGYN and she ordered blood work and ultrasound. The blood work apparently did not show elevated testosterone or androgens, and progesterone was low. The ultrasound showed ‘polycystic’ ovaries, and I was diagnosed with PCOS. I tried clomid (had horrible responses all four times), but apparently ovulated around day 21. After this I was advised to have laparoscopic ovarian drilling. This ended up in MULTIPLE complications, and I still am not ovulating. I have been exercising what I would consider quite a bit in the last few years, and have always struggled with ‘dieting’, and wanting to be thin. After surgery I lost 20lbs, which lands me at 5’5 and 117lbs. I am now wondering whether HA is what is happening. I recently had random bloodwork done again, and testosterone, hba1c, thyroid were normal. Estrogen was low (70), progesterone was low (1) and LH-FSH relatively low.
I’m nervous to start eating more carbs when I have been ‘disciplined’ to cut back with the diagnosis of PCOS.
If you have any suggestions, please share. I am desperately trying to figure out what is going on- when all the physicians keep suggesting clomid or IVF. If I can approach this by identifying the cause, I would be far better off.
Thanks again for your words of wisdom- it looks like you have encouraged a lot of women through this.
I am so glad I have found your site! It has so much valuable information, and answers to questions I have been asking myself for the past many months.
I went off of BCP in July 2013, and have been trying to conceive ever since. I haven’t gotten my period, since coming off BCPs which didn’t surprise me as I have never had a normal cycle.
I went to an RE who said that because I have had a previous history with acne (as does my mother and my sister who have had no trouble conceiving whats so ever) and amenorrhea she thinks I have PCOS. I was a little confused as I am 5’5 and 111 lbs, but she did not seem to think that my low BMI was the issue. My blood tests for testosterone and DHEAS came out normal, my FSH came out normal at 7.3 any my estradiol came out what I thought was low at 28, but she says is normal.
I am having trouble believing this diagnosis, as I think I may suffer from HA (although I have not been exercising since trying to conceive), but I have suffered from restrictive eating (but on my worst days am getting at least 1200 calories a day) for a large part of my life. I also I had a positive response to the progesterone challenge, which is not typical for HA. I am so confused because I feel like I have symptoms from both disorders, but neither seems to hit the nail on the head.
Do you have any thoughts or suggestions on my next course of action? I feel like there is no light at the end of the tunnel, and the more I research the more confused I become.
Your situation, as uncommon as it may seem, is not actually all that uncommon. Many women seem to fit the bill for “both types” of PCOS. I’ve got to tell you though that restrictive eating is a hell of a red flag. Perhaps the number one requirement for menstruating is eating sufficient calories every day. I mean that. No questions asked. That may be why your estrogen is low (and, of course, being such a low BMI doesn’t help). And your progesterone may be working a bit, but that only means that it can respond to a medical test, not that it can work right on its own.
You may need some time to recover from BC. But I also “passed” the progesterone test when my body weight was too low and I ate too few calories. Sometimes when things walk like ducks and quack like ducks they are ducks. So – anyway. I know its not the world’s best advice to hear – and I know you are also on the right track – but relaxing your eating (and doing so consistently) could be an enormous help to your fertility journey
I am 31 years old and have not had natural periods for about 5 years. I started my periods when I was quite old (16) and never had a regular cycle. I lost a lot of weight in my mid-twenties (going from a UK size 10/12 to a size 6) as I dramatically reduced my calorie intake. A year or so later I started to put on weight (going up to a UK size 8). I had a good appetite and ate healthily, but to avoid putting on too much weight I took up long distance running.
A couple of years ago, I was diagnosed with hypothalmic amenorrhea. Since then I have continued to eat a well-balanced diet and I completely stopped running about 6 months ago. My BMI is now over 21.
My husband and I would like to start a family, but my periods have still not returned. The doctors prescribed me with clomid – I responded well to the first round (good follicular growth), but did not ovulate (my blood tests showed that I had very low progesterone). As I responded well to clomid, the doctors now think I am recovering from HA, but that I have underlying PCOS. That said, I don’t seem to have any of the PCOS symptoms, other than amenohrrea and occasional outbreaks of acne on the chin (very mild). I am therefore not completeley convinced I have PCOS. I have now been put on Provera in preparation for my next round of clomid.
In terms of diet, I have cut out refined sugar and am wondering whether I should also cut out gluten and dairy? I have heard that both of these food groups can cause hormone imbalances. I am now eating a healthy balanced diet (plenty of good fats (mainly through nuts) and carbohydrates (mainly through fruit, bread, oats and potatoes). Do you think I should cut out gluten and dairy? I am at a loss as to what I should do in terms of diet as I am not sure whether I have HA or PCOS or both!
I would love to hear your thoughts on diet or anything else which you think might help!
Yes, I do think gluten at least should be cut, definitely. Dairy experimented with, too. This is because PCOS is often worsened by poor gut health, and these can both be gut irritating foods.
PCOS and HA are not exclusive (I myself had both) – as I indicated in this post. Seems to me like weight gain, calorie increase, stress reduction, and making sure to have carbs and fat in your diet are the most important things. This kind of healing can take time – and you may also end up gaining more weight than you thought you might need to at first. So my recommendation is to learn better to always eat until you are full and to make sure you eat whenever you are hungry. This is so, very important for overcoming HA. So, very important. Calories, often, are the key to HA.
I have a whole book on the subject… :)…. but the over few sentences summarize it quite nicely, I think.
I think I have type 2 PCOS but my body fat percentage is 24-25%
Could that still be it? I’m 1,8 in height and currently 61 kg. That means BMI round 20
Thank you so much for all of this info! I’m so happy I found your site!
I do not over exercise or under eat. I am 5’7″ and 124lbs. I am however, very stressed about TTC and my health. do you think this kind of stress alone could cause HA?
any info or advice would be extremely valued. 🙂
currently 31yo TTC
progesterone challenge- no bleed
day 110 of cycle
TSH 2.3 mU/L
FSH 5.2 IU/L
prolactin 6.8 ug/L
estradiol 255 pmol/L
What a great article! normally I read of the conditions seperately however never together which is what I have been diagnosed with.
My story is extremely long winded, with whenever coming off the BCP,not getting a period and breaking out in acne around the 4-6 month mark. Oddly though, androgens levels are all normal.
My endocrinologist diagnosed me with Insulin resistance with HA components as my FSH, LH and estrogen were negligible, and my two-hour OGT insulin level did not go down (however apparantly by two other specialists, my level was still quite normal). I immediately got put on Metformin. After being slightly uncompliant, for 6 months, I had my usual outbreak of acne, at which I got prescribed Spriolactan even though my androgen levels were normal. Oh, I am also mildly above recommended BMI, however have alot of muscle as opposed to fat. Due to the acne also and not getting to see my endocrinologist, i went back on the pill to clear up the acne which worked a charm.
So back off the pill, not being compliant with my metformin, assymptomatic and no periods. Off to get a second opinion 6 months later, got new bloods.. LH:FSH ration 4:1, estrogen low progesterone low, androgens normal.. got advised most important thing to fix was my low estrogen and recommended I go on Hormone replacement therapy!!! Unfortunately however, not knowing where
my cycle was, tooking a morning after pill.. and out comes acne!!!
Went back to my original endocrinologist who advised stick to metformin and also recommence sprirolactan!
Absolutely so confused I booked myself in for a third opinion who was able to explain that I have HA coinciding with PCOS. With the problem being that treatment of both is quite different but food, stress levels and exercise are all important factors. I have been advised to reduced my exercise which is usually at least 5 times per week to max three, focusing more on weights, and adding yoga and pilates.
I am wondering if anyone has had anything similar and how they have gone with it?
Hi Stefani! Huge thanks for this article! I was just diagnosed with PCOS, but I think I might have HA, or both. My blood tests show normal testosterone levels and TSH, good lipids, close to low prolactin, and I got an unremarkable ultrasound (so no cysts apparently). I’m vitamin D deficient though. My OB GYN diagnosed me with PCOS based on irregular cycles (range 26-40 days, but I missed two months this year in a row) and a 2:1 LH:FSH. The OB GYN never asked me about lifestyle, but the two months before I missed my periods, I completed the Insanity workout program. I didn’t follow the diet plan or count calories because I’m already small and just wanted to tone for the summer. I did try to eat healthy. I think my exercise might have caused these issues, whether it be PCOS, HA, both, or something else. I’m 5 ft 2, 102 lbs so a BMI of 18.7. I was born premature and I’ve always been small for my age, this is actually my highest BMI. I think I gained muscle exercising, but lost fat, messing up my estrogen. Unfortunately estrogen, progesterone, cortisol or leptin were not tested. I’m a very stressed person, although I’m 21, I do a lot in school and in 2005 I was diagnosed with GAD. So I’m curious if cortisol also plays a part. I’m on birth control now, but id rather not be. I hope to find out what my problem really is and find a solution. Any help you could provide is great! I will try to reduce exercising as a first step. Thanks again!
Hi Stefani, I am hoping you can give me some advice. I have been through the mill the last year trying to find out what is wrong with me. I have not had a period in 17months since coming off birth control. Discovered I have very low oestrogen. I had blood tests regularly to monitor this and it never moved much-long story short i went for a scan and was told by G.P I had PCOS as cysts on ovaries-I then was referred to gynae who did another scan and bloods who said it wasn’t pcos. He then referred me to an endocrinologist who said there is nothing wrong and I to just come back in 4 months for another blood test. That would make it two years without a period. The thing is I just no I have pcos and have been tortured by different doctors telling me different things I seem to have all the symptoms of pcos but the gynae says my FSH and LH are normal therefore its not pcos regardless of my very low oestrogen .
Symptoms are :
weight gain and cannot loose it despite eating paleo and personal training 5-6 times per week body fat 21% BMI of 27.5
always had clear skin and had very bad outbreak of acne at age 20 -completed a course of roacccutane for 7months-spots still there at 22 now
hot flashes every now and then
I just feel so lost and confused at how iv been treated – I hope you can help as I dont know what to do next
Hi – I love this – it’s the first time I’ve seen HA w/ PCOS in an article. I’ve seen several doctors and have undergone fertility treatments (2 IVF cycles) without success. When I went off birth control, I didn’t get my period like everyone else on here. I had a BMI of about 20-21 then. Then I went back on, no issues, then went off again and same thing. Initially, I got a thyroiditis and lost a bunch of weight despite eating A LOT (low of 112 at 5’5″ but I knew it was a problem, so I was eating a lot of extra calories), so obviously that was not great. Once most of my thyroid function was destroyed, I ended up with hypothyroidism, spent about 6 months getting it under control and gained the weight back. I currently have a BMI of about 20 and exercise a lot (yes, running, and yes endurance running) – it’s something I started AFTER I knew I had an absent period.
My current reproductive endocrinologist said that he believes my issue is a combination of polycystic ovaries and hypo hypo. I already eat a lot – I DEFINITELY have over 2,200 calories a day, and it’s probably closer to 3,000 or more on heavier exercising days. My exercise has fluctuated over the past year. I’ve taken complete breaks for months at a time but with similar weight without success. What are your thoughts since I feel like I have taken the recommendations?
I have many of the symptoms, so I don’t this my doc’s diagnosis is off, but don’t know what to do. I haven’t had a period without medical intervention for a couple of years. I’m not sure if this is relevant, but I have had three miscarriages this year (2 chemicals, 1 blighted ovum). I am wondering if these might also be related to my condition and possible insulin resistance. But again, there are so many treatment possibilities in what appears to be a very cloudy field of study, so I’m at a loss as to what I should do.
Thank you so much for looking closer into something the medical community seems to have given up on.
Up to some point, my story mirrors those above. I was 145 pounds, got into running and intensive exercise while limiting calories, and dropped 25 pounds in a year. All the while I was on birth control. After I was at the new skinny weight for one year, I quit the BC and my periods never started again. Eventually, my doctors determined that the reason why I had been having periods was solely due to the BC tricking my hormones.
Then, they began the ultrasound and hormone exams, and that is when things went weird. I have multiple cysts on both ovaries. However, I also have non-existent hormones, including low testosterone and low androgen. Finally, the radius of the cysts fall just shy of the requirement for PCOS.
I have been to four specialists around the world and none of them can determine what exactly I have, because like you mention, there has not been a tie to HA and cysts, so PCOS is usually the default. I read with interest your article above, but I also noticed that while a couple of your examples link HA to imbalanced hormones, they only mention two hypotheticals that link HA to cysts, and I am wondering if that link was speculative or something you have come across. To now, the doctors have no definitive cases and are not sure what to do with me.
Since this adventure, I have gained over 10 pounds and cut down the exercise. I have also quit being strictly paleo in order to bring down the stress and regime and introduce new foods back into my diet. My periods have not returned and the cysts don’t seem to want to go away, so I am on a hormone regulator to keep periods and avoid osteoporosis.
This is all to say, I would be incredibly interested in your research linking HA to cysts, without PCOS. I think there is a huge need in the medical community for these examinations.
Thank you for all your work
I am dealing with HA for 7 years now. I was overweight during puberty and lost 50 pounds when I was 18. After losing the first 25 pounds I lost my period. I have some PCO typical problems like acne, strange hair growth (hirsutism), small breasts. But no cysts so my ob-gyn told me that I don’t have PCO but HA due to my weight loss.
Do you have any adice for me how I can overcome HA? I gained weight up to a BMI of 27 but I didnt get my period back. I do not exercise regularly so that’s not the issue. I sleep well and at least 8 hours, I am not stressed. I am now at a healthy BMI again (21). My ob-gyn wants me to go on BC again but I want my cycles back so badly!
Wow, great article and exactly what I needed to read! 11 months ago I went off bcp after being on it for 6 years (I am 21 now) I had to wait five months before bleeding (which was more a bloody cerival mucus than blood) and then four months before the next and two before the next. It still doesn’t feel like a normal period to me. It’s more light and spotting. I am desperately trying to get my cycle back. I was diagnosed with pcos this past spring after an ultrasound revealed polycystic ovaries, my lack of menstration and I had an elevated DHEAS level at 374, my testosterone was on the high side of normal at 55. The doctor recommended Provera and sent me on me way. I haven’t taken it. I started supplementing a multivitamin, vitamin B complex, magnesium, vitamin D, and fish oil. After researching I believe I might have hypothalamic amenorrhea as well. I live a stressed life as a nursing student working many hours a week, sometimes it’s easily for me to consume under 1000 calories a day on accident. I am about 5’4 and weigh 105. I believe I may have had hypothalamic amenorrhea since my first period. I got it at 13 and it was irregular ever since, I would get it maybe only twice a year and it would be extremely heavy when it would come. But at the time I had very low body fat being 5’3 and 90 lbs when I went on the pill 6 years ago. Do you think increasing my caloric intake would cause less stress on my body causing the DHEAS level to stop? Its hard to find info on elevates DHEAS levels in pcos, mostly it’s testosterone. Thanks!
I wanted to share that I was diagnosed with both poly cystic ovaries and HA. I am working with a functional dr. to find the root cause of my hormonal disregulation, resulting in these conditions. I tried working with an reproductive endocrinologist using hormonal treatments but it didn’t work. We’ve discovered that I had lead toxicity as well as chronic inflammatory response syndrome due to potential biotoxin exposure. It was a relief to find this as I was going crazy trying to solve the problem through diet and exercise alone. I encourage everyone to seek the root cause and really get to know yourself. I think this article has great advice, but seek help if work on your diet and exercise and stress management alone are not solving the problem.
Not every woman who is thin and has pcos is starving herself or not eating enough. You, a blogger, criticize the medical community for categorizing pcos patients into a blanket statement of recommendations, while doing the same thing yourself in your assumption that all thin cysters are ‘stressed’ and not eating enough. Sigh, thank God my doctor has a medical degree!
I also talk about hypothyroidism and post birth control syndrome and insulin resistance without obesity and MTHFR as causes of PCOS, all of which can be “normal weight” or “thin” without having that be a cause of the PCOS. I make no such presumptions that you list
Dear Stefani. Awesome information. I hope you still check here 🙂
I am a 24-year-old girl from Iran. I got my first period when I was 12… for 2 years, everything was fine, until at 15, when everything awfully changed. My period started to get really irregular, then stopped. and finally I was diagnosed with PCOS.
They immediately put me on birth control pills, and told me to use it for years with no worries!!!!
Until this March when I finally stopped the pills, because I was really tired after all, and I was trying to find a solution.
Done many many blood tests… Everything was normal… Literally EVERYTHING, except LOW ESTRADIOL, (I get my period with estrogen pills) and only ultrasound reports said I have PCOS (saying small follicles are stuck) That was when I wondered maybe I’m not even PCOS! I have read a lot about many PCOS symptoms and I didn’t belong to any of them… So I searched a little more and I found out about “HYPOTHALAMIC AMENORRHEA”… I read about the symptoms and damn!!!! THEY SOUND FAMILIAR! low estrogen level, stressful life (always being a perfectionist) bad bad bad eating habits (I do count the calories although I am underweight. – around 96 lbs, and I’m 5’1)
and now…. I AM WORRIED EVEN MORE!!!!
I’m worried that I may never be able to conceive… I do really want to make a family one day.
Is it possible for me to get my period back naturally?
Can I get pregnant?
Am I close to early menopause?
🙂 Hi. No, this is not early menopause, and yes, if you start to eat more and reduce stress, it is entirely likely that you will be able to get your fertility back. At least, I see this happen for other women (including myself) all of the time. <3 <3
I recently lost my period for the past 3 months. My doc ran test – no abnormal cysts – test results:
Testosterone Total : 43 ng/dL
Testosterone Free: 0.6 ng/dL
SHBG: 51 nmol/L
FSH (8 mIU/mL) to LH (3 mIU/mL)
My OBGYN doesnt think its PCOS since he says the test results are within normal ranges but I dont think that can be true? Could it be HA – with the switched FSH/LH ration? I am experiencing sudden acne as well!
Any help is greatly appreciated : )
Yes. It’s also possible it’s been recent enough for cysts to not have developed yet. It would also be interesting to see estrogen levels because if they’re super low then that would inhibit cyst development,thus explaining the absence. Unfortunately sometimes we don’t fall into the perfect categories used by medicine, so what we need to do is become as educated as possible about the various conditions (like you are doing!) and see where we fell through the cracks 🙂