PCOS, Hypothalamic Amenorrhea, or Both?

Not getting your period is a hallmark feature of polycystic ovary syndrome, but some women may actually have a condition known as hypothalamic amenorrhea. Here’s what to know about the differences between the two conditions.

Diagnosing PCOS is not a simple task. The range of symptoms varies widely from individual to individual. Some physical manifestations include hirsutism (excess hair), acne that is not treatable by over the counter medications, acanthosis nigricans (dark, leathery patches on the skin), weight gain despite a steady diet, missing or sporadic periods …. But not every woman with PCOS experiences all these symptoms, and some have none.

Even blood work and what the ovaries look like on ultrasound can vary. So in order to diagnose PCOS, doctors have to look at a big picture of what is going on, as well as ruling out other potential causes of similar symptoms, such as hypothalamic amenorrhea.

Diagnostic Criteria for PCOS

Various meetings of experts in PCOS have been held to try and standardize the diagnosis as much as possible, and the consensus is that two out of three of the following criteria are required for a diagnosis, as well as ruling out other conditions that can cause similar symptoms, a few of which we’ll discuss.:

  • Amenorrhea (no period) or oligomenorrhea (irregular periods)
  • Hyperandrogenism (elevated ‘male’ hormones – either bloodwork or physical symptoms)
  • Poly-cystic ovaries when viewed with ultrasound

Amenorrhea is an easy one – no period for six or more months.

Oligomenorrhea is defined as periods that are more than 35 days apart, often not a consistent number.

Hyperandrogenism encompasses many of the physical symptoms we discussed above, as well as elevated testosterone (free testosterone is the best measure of this), DHEAS, and androstenedione. If 17-OH-progesterone (17 hydroxy progesterone) is elevated, that suggests a condition called congenital adrenal hyperplasia, which can also lead to high androgens.

Polycystic ovaries are very specifically defined as having a minimum of 25 small follicles between 2-9mm on an ovary, and/or an ovarian volume of 10 cubic centimeters or more (article 1, article 2). This is really important; it is not enough to look at an ovary and see a lot of follicles – about 30% of the population has “multi-cystic” ovaries with more follicles than “normal” but not enough to qualify as polycystic.

(Case courtesy of Dr Alborz Jahangiri, <a href=”https://radiopaedia.org/”>Radiopaedia.org</a>. From the case <a href=”https://radiopaedia.org/cases/46698″>rID: 46698</a>)

Imbalanced Hormones and PCOS

There are a couple of other things that are common with PCOS but not diagnostic, meaning that they do not occur frequently enough, or can have other causes. These are a high luteinizing hormone (LH), often 2-3 times as high as follicle stimulating hormone (FSH), and ovaries with a “string of pearls” appearance – that is, the small follicle are all lined up at the edge of the ovaries, looking like a pearl necklace.

Exclusion of Other Medical Conditions

The conditions that need to be ruled out before a diagnosis of PCOS can be made are congenital adrenal hyperplasia (CAH), Cushing’s syndrome, androgen secreting tumors, (all pretty rare) and hypogonadotropic hypogonadism (I know, it’s a mouthful), also known as hypothalamic amenorrhea.

  • There are five different forms of CAH that present with varied symptoms, some of which include secondary PCOS. Those that include hyperandrogenism manifest with a markedly elevated level of 17-OH-progesterone, which should be tested prior to a PCOS diagnosis.
  • Cushing’s syndrome can manifest with symptoms similar to PCOS – including irregular menstrual cycles, excess hair growth, and weight gain. Elevated levels of cortisol are the overriding feature of this syndrome.
  • Androgen-secreting tumors will present with a very high level of testosterone (ovarian tumor) or adrenal growth.
  • Hypogonadotropic hypogonadism / hypothalamic amenorrhea will present rather differently, typically with LOW LH (although normal in about 30%) and estradiol, perhaps low FSH and free T, and normal 17-OHP, DHEAS, androstenedione.

What is Hypothalamic Amenorrhea?

Alright, so maybe you’re contemplating… “some of this does sound like me… but what the heck IS hypothalamic amenorrhea?”

The simple answer is that hypothalamic amenorrhea is a condition in which your brain (specifically the hypothalamus which is a one of the major control centers) has decided that you’re not getting enough energy, or your stress levels are too high to reproduce (or both), so it shuts down your reproductive system.

Now you might think that this is not a problem. No period = no monthly mess, which is great, right?

Well… not so much. Unfortunately, the shutdown of periods comes along with shutting down a whole host of other things with both short and long term effects.

Short Term Effects of Hypothalamic Amenorrhea

  • moody and anxious (hangry, anyone?)
  • low libido
  • no lubrication
  • brittle hair and nails, or hair loss
  • digestive disturbances like constipation and IBD
  • no patience
  • get sick frequently
  • have a hard time recovering from injuries or get stress fractures

Long term Complications of Hypothalamic Amenorrhea

  • osteopenia/osteoporosis either now or younger than expected
  • higher risk for heart disease (which seems so counter intuitive, isn’t exercise supposed to protect us??)
  • infertility
  • potentially an increased risk of early dementia
  • social consequences – isolation from friends and family due to food rules, not wanting to eat out (unsafe foods), not participating in events/food at events, choosing the gym or exercise over spending time with friends and family, planning ones day around exercise…

I Was Told I Have “Lean” PCOS…

Sometimes women are told that they have “lean PCOS” (a term that I’ve rather grown to despise as I’ve become more aware of the Health At Every Size movement).

This is based on 1) no periods (criterion 1 for PCOS diagnosis) and 2) “multicystic” ovaries (criterion 3) being mislabeled as “polycystic”, and 3) no further investigation being performed.

It is very important that this diagnosis be correct, so in someone who meets any of the following criteria, HA should be considered and ruled out prior to a PCOS diagnosis being finalized.

Examination of hormone levels can help with this diagnosis (I would assess LH, FSH, free testosterone at a bare minimum). If all androgens are normal (or low), and luteinizing hormone is low (<3 IU/mL), HA is strongly suggested.

I would not diagnose PCOS in someone meeting some or all of the following criteria in the absence of physical or biochemical symptoms of hyperandrogenism:

  • Weight loss of 10 lb or more at some time in the past
  • In a smaller body (the average BMI of women with HA is 19. Not to say that women in all different sized bodies can’t have HA, they do, but it is particularly common in women with an underweight or “low-normal” BMI)
  • Exercising multiple days per week, often high intensity exercise
  • Restricting amount of food or avoiding food groups
  • Feeling psychologically stressed (including stress from trying to be a “picture of health”)

(These two blog posts delve into these factors in much greater detail: exercise and eating, weight/weight loss, stress, and genetics)

 

PCOS or Hypothalamic Amenorrhea?

If HA is misdiagnosed as PCOS, the woman is then encouraged to exercise more (even though someone with hypothalamic amenorrhea is typically (although not always) exercising quite a lot to begin with – as shown in this graph of days per week and time per session of exercise in 300 women with hypothalamic amenorrhea.

 

 

 

 

 

 

 

 

 

At the same time she is encouraged to reduce carbohydrates and avoid sugar, recommendations that are typical for treating PCOS, but in the case of someone with HA, further exacerbating an already established energy and food group deficit.

 

PCOS, Hypothalamic Amenorrhea, or Both?

One other thing to mention is that it is possible to have both HA and PCOS, however HA will almost always mask the PCOS symptoms, because your body doesn’t have enough excess energy to produce the hormones that lead to PCOS. Once you recover from HA it is possible for symptoms of PCOS to manifest (although in my experience this is not common). But then, at least, you are only dealing with ONE disorder, instead of two…

Please do read the chapter from my book that addresses PCOS and HA, as it goes into much more detail than is possible in a blog post.

Treatment for Hypothalamic Amenorrhea

The easy (well, simple to say but actually really hard to put into practice) solution to HA is to eat more (I recommend around 2500 calories a day, although the ultimate goal is to stop the time consuming and stress-inducing practice of counting calories/macros/whatever), gain some weight, and exercise less (in particular, cutting out high intensity exercise).

It is also important not to restrict the food groups you consume, aside from allergies and strong moral concerns. Each different type of nutrient (e.g., carbohydrates, fats, proteins) creates a hormonal signal when eaten, that is sensed by the hypothalamus. Not eating fat, for example, means that the hormone PeptideYY (PYY) is not produced in normal quantities; a low carb/sugar diet means low levels of glucose; each of these can affect the hypothalamus and contribute to its suppression, keeping periods away.

It is NOT to put a band-aid on the situation by taking birth control pills. We discuss all of this is WAY more detail in No Period. Now What?

And I can’t tell you “gain X pounds and you’ll get your period back in 4 weeks, or 4 months”… our bodies just don’t work like that. Each of us has a unique combination of factors that lead to no period… and each of us has a unique recipe for recovery. What I can tell you is that the median time to recovery is six months, and that does NOT depend on length of time your cycle has been missing, which is hopefully reassuring.

 

If this is ringing a bell for you, please join my facebook support group, check out my website and book No Period. Now What?

Dr. Nicola Rinaldi has a PhD in biology from MIT. Since experiencing hypothalamic amenorrhea (missing periods) herself, Dr. Rinaldi has been on a mission to spread awareness of the condition and how to recover. In 2016 she published the book “No Period. Now What?” This book is a comprehensive resource that includes much of the medical and scientific research that underlies our current understanding of the triggers for amenorrhea, what steps to take for recovery, and treatments to use for recovery and pregnancy as needed. In addition, Dr. Rinaldi performed the largest survey to date of women who likewise experienced amenorrhea, and includes results from the survey answering many of the common questions women have, such as “How long will it take to recover?” “Will I be able to get pregnant?” and “Will I resume cycling after pregnancy?” Finally, the book includes Dr. Rinaldi’s own story along with those of hundreds of other women, providing hope and reassurance to women following in their footsteps. Since publishing “No Period. Now What?” Dr. Rinaldi has been a guest on multiple podcasts, attended the ACSM and SCAN conferences, and presented the winning poster at the 2017 Female Athlete Conference.

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