Functional hypothalamic amenorrhea: a hormonal state or abnormality?

It took me a while to actually pay attention to my lack of periods. For a while, I just ignored it and assumed it'd sort itself out.

But more than 2 years after I stopped the OC pill, I still hadn't noticed any sign of a period. It seemed like my body hadn't registered that I'd cut off the synthetic hormone supply. I finally booked a time to see my doctor. 'That's not normal,' she said, surprised. 'If a woman doesn't have a period for 3 months or more, it's classified as Functional Hypothalamic Amenorrhea'.

Deciphering my medical label

And then all of a sudden I had a label. A technical medical term to pathologise my body's current hormonal state. Functional Hypothalamic Amenorrhea. Translation: 'We don't really know what the problem is'. And to fix it? A prescription for the pill. The one and the same pill that contributed to the problem had become the cure. Ironic, huh? I didn't take that path because it didn't feel right for me. But it meant that I had to resist the default medical approach and trial a different one. It's not that my doctors didn't support my decision - both my GP and my specialist accepted my hesitance to take the OC pill and could see that I felt more inclined to take a natural route to promote my body's cycles. But they didn't really engage in a broader discussion about the things that I could do aside from take the OC pill or use HRT. They'd just ask me to book another check up in 4 to 6 months time, and that'd be that.

Education and information can be different things

I had no idea where to start ... so I turned to Google. I decided to find out more about Functional Hypothalamic Amenorrhea. I certainly didn't have any trouble finding pages to read. A quick search of 'Women's hormones' lists about 62 400 000 results. Even 'Functional Hypothalamic Amenorrhea' generates 162 000 results. I stumbled across many personal stories of young women eager to share 'the solution'. I soon realised that eBooks called 'What You Really Need to Get Your Period Back!' did more to distract me rather than help me. I couldn't tell if I could rely on the information or not. Often I'd find stories of women who had completely stopped weights training and rapidly put on body fat from eating calorie dense foods. Then they'd just link A and B together to make C - ie, I stopped lifting and put on weight, and my period returned. Most articles seemed to blame lack of periods on too little calories or too little body fat. But as I'd learn, it's far more nuanced than that. No period can also be due to nutrient deficiencies or (the big one!) chronic stress. And often, the online stories didn't delve into the reasons behind the strategies. Why did it work? What's the circumstances?

I back tracked to the basics. And I found that you can access some reliable and accurate medical information online for free - the stuff that your doctor tells you, and far more than that. My favourite is the MCD Manual for the Medical Professional - a trusted provider of medical information created by doctors, for doctors. It contains detailed information, diagnostic tools and even lab testing ranges.There's a simplified consumer version too. And then there's the latest research studies. You can literally look at the data first hand. PubMed is a gigantic, free search engine that you can use to access more than 29 million references and abstracts for published journal articles on life sciences and biomedical topics. It's incredible. I didn't realise the calibre of the information that's out there until I really looked.

If I'm honest, I hesitate to talk about the medical side of this. I don't intend to pretend to be a doctor online, and I'm reluctant to err too close to that blurred line. I don't think that you should self-diagnose. But the fact is there's lots of information out there that can really help you to understand your body and your circumstances, and it's hidden because it's seen as 'doctor territory'. You should consult a doctor if you're not one, but that's not a reason to remain blissfully naive. You have all the tools available to you to better understand your circumstances.  

What is Functional Hypothalamic Amenorrhea?

Let's call it FHA for short. 

Basically, it's a term that the medical profession uses to diagnose a chronic absence of periods and label it a 'menstrual abnormality'.

Amenorrhea is the absence of periods. This can be primary (ie, periods don't start) or secondary (ie, period start, but then stop for more than 3 months). FHA is a form of secondary amenorrhea. If you also don't ovulate (another common side to this story) it's called anovulatory secondary amenorrhea.

Hypothalamic refers to the brain. The hypothalamus is a command centre in our brain that monitors and influences the body's hormonal state. It conducts the symphony of hormones that is the Hypothalamic Pituitary Ovarian axis (HPO axis). If you don't have a period but you used to, it's often a sign that there's a disruption at one of the links in the HPO axis chain. In FHA, the hypothalamus is the suspected source of the imbalance. In some cases it can be a gland that isn't functioning properly or a specific hormonal excess or deficiency. Let's take a quick look at the HPO axis and some of the hormones.

  • The hypothalamus generates pulses of Gonadotropin-Releasing Hormone (GnRH). 

  • GnRH stimulates the pituitary gland to produce gonadotropins called Follicle Stimulating Hormone (FSH) and Luteinising Hormone (LH).

  • FSH and LH are released into the blood stream (also in pulses) and stimulate the ovaries to produce estrogen (mainly in the form of Estradiol) from androgens (mainly Testosterone), and make Progesterone (after ovulation). These hormones peak and drop at different stages of our menstrual cycle.

Just to make it more complicated, the hypothalamus is actually subject to a negative feedback loop, so it's actions are affected by the things that come before it. There's cross talk from both directions (ie, ovarian hormones talk to the pituitary and the hypothalamus.)

What's happening in the brain that could put the brakes on the HPO axis and stop your period entirely?

Some of the common risk factors include:

  • Stress! Chronic stress has a dramatic impact on hormone production. The hypothalamus detects information about your nutritional status, outside environmental factors and other demands on your body to assess the level of threat around you. If you are under increased threat (for example, too little calories for your needs, a job or life stressor, an injury, etc.), this triggers a hormonal cascade via the Hypothalamic Pituitary Adrenal axis (HPA axis). Chronic stress can compromise the HPA axis and this has ripple effects across the entire body and disrupts the body's natural rhythms.

  • Too much exercise

  • Low body weight

  • Low body fat

  • Nutrient deficiencies or sheer lack of calories. The body needs energy to menstruate, ovulate and maintain a pregnancy

  • A recent change in weight, diet or exercise intensity

  • Drugs

  • Chronic illness

Dr Prior, Professor of Endocrinology and Metabolism at the University of British Columbia and founder of the Centre for Menstrual Cycle and Ovulation Research, puts it like this:

'When you lose your period it is evidence that the hypothalamus is being wise. Its job is protective. It is like your hypothalamus is saying, “I wouldn’t want this very skinny or very stressed woman, for example, to get pregnant. So let’s save energy for other things and shut down her reproductive system."'

The pill also suppresses the HPO axis - that's its job. The combination of synthetic estrogen and progestin decreases the secretion of GnRH and prevents an LH and FSH surge. You don't actually have a 'period' or (usually) ovulate while you're on the pill. But if your period doesn't return after you stop the OC pill, the pill isn't solely to blame. It's one factor of many, and it may add fuel to the fire if you're chronically stressed and don't handle that stress properly (I didn't). The catch 22 of the OC pill is that while you're on it, it obscures your ability to read your body and its hormonal cycles. It's supposed to do that, but it just makes it more difficult to assess the impact of all the other factors that may compound your risk of a hormonal dysfunction later on.

It's not as simple as just one cause - it's a combination of factors. I didn't step back and see the full picture until far later on because 1) I didn't understand any of this, and 2) I didn't question my hormones or lack of cycle.

A glimpse of the medical model

The MSD Manual spells out the steps that a doctor takes if a female patient reports that she has missed her period for more than 3 months (or 3 usual cycles). In this case, the doctor assesses the patient for amenorrhea. They will look at your body composition and build, calculate your body mass index (BMI) and ask about your history. Testing for FHA is a process of elimination. The Professional version of the Manual contains a detailed chart on how to evaluate secondary amenorrhea. You'll notice that it just stops after a diagnosis of FHA. That's the end point.

And it's treatment is tailored to the symptoms, not the cause. My blood test results depicted an estrogen deficiency. Therefore, I'm treated for estrogen deficiency to prevent its effects. If your estrogen is chronically at rock bottom, this can cause issues similar to the problems linked to menopause - decreased bone density (osteoporosis), disrupted sleep, decreased libido an increased risk of heart and blood vessel disorders. Cue the prescription for the OC pill. On the face of it, it makes sense. I did have some of these problems - my bone density scan indicated osteopenia. Yet this is a simplified picture of my health state. The symptom (decreased estrogen production) is treated using synthetic estrogen, yet the deeper issue (my absence of cycles) is labelled and put in the too hard basket. It's a band aid solution. Instead, if I could address the reason that I didn't have a cycle, then I could possibly promote the return of my cycle and the consequent increase of estrogen production. That process didn't happen instantly. But after about a year and under guidance, it worked. 

Is there another way to look at this issue?

FHA is labelled as a medical problem and it attracts a medical treatment. The medical label is really just that - a label. Labels change, and if the label changes then it also changes our thinking about that thing. In fact, the definition of health itself has changed multiple times as cultural ideas about health continue to shift. It's usually traditional professions and influential institutions that have the final say. 

There are other approaches you can apply to look at this issue. For example, leaders in the field of women's health like Victoria Felkar and Dr Prior say that losing your period is often due to an imbalance, not disease. For example, it can happen if you're sick, emotionally upset, too slim or frail, or exercising too often and too intensely for the fuel that your body has available to it.

Using terms like 'disease' and 'abnormal' pathologise the patient and can create unnecessary anxiety. Instead, talking in terms of the person's hormonal state is far more useful and better captures the bigger picture. 

We are all so different, but the solution is generic. Is there a better starting point?

  • Instead of clinging to traditional hierarchies, could there be more opportunities for collaboration among doctor and patient?

  • Instead of defaulting to aged assumptions and generic responses, could professionals and patients work together to explore strategies tailored to the person?

  • Instead of defaulting to pills, is there an integrated approach available?

  • Before attaching a medical label to a person and casting them as 'not normal', is it possible that 'normal' is relative?

  • For a functional issue like Functional Hypothalamic Amenorrhea, could professionals and patients work together to find a functional approach that addresses the underlying causes instead of just masking the symptoms using a drug?

A disclaimer

This is a practical outline based on simple information that is freely available online and my personal experience. I'm not a doctor and I don't pretend to be one online. At times I may critique the medical profession, but at no point do I suggest that a patient should abandon their doctor. If you have a health issue of any kind, you should consult a doctor if you're not one. I did. I found a GP I trust and who listens to my ideas and questions, even if she may have a different opinion. Please enjoy my information in the spirit that it's intended - as a practical, user-friendly synthesis of commonly accepted and broadly publicised information, for you to ponder and apply as desired to suit you and your body.