Hypothalamic Amenorrhoea – a Quick Guide
Introduction
Hypothalamic Amenorrhoea (HA) has had a huge impact on my life. Before my diagnosis, I knew next to nothing about this condition. After my diagnosis I searched for more answers, learning all I could about it. I was frustrated that the only treatment option was going back on the contraceptive pill, mostly to help prevent comorbidities of HA including bone loss, but not to restore normal menstruation and reproductive function [1].
It was after I sought help from a Registered Nutritional Therapist that I started to understand the complex causes of HA and what could help reverse it.
Most importantly, I started to understand how some of my habits were driving the condition and was empowered to make the changes I needed. Luckily, I got enough support to make these important changes, allowing my hormones to rise and re-balance, and my periods to return. My success in overcoming HA inspired me to retrain both in nutritional therapy and clinical nutrition, and I now dedicate my work and research to further understand the underlying causes and complexities of HA and how best to support women who suffer from this condition.
My aim is to empower women with the knowledge they need to fully comprehend this hormonal circumstance and make choices that will help them restore their health and their periods. This article is the first step as it’s important to understand what HA is, how it starts, how it is diagnosed, and what treatments have been proven to help.
What is Hypothalamic Amenorrhoea?
Hypothalamic Amenorrhoea (HA) is a form of chronic anovulation (lack of ovulation) that results in the loss of 3 (or more) consecutive periods [2]. It is also called Functional Hypothalamic Amenorrhoea (FHA) but for the sake of clarity and brevity, I will be referring to it as HA. Whilst HA may be classified as a menstruation disorder, it is (in essence) a neuroendocrine condition that causes periods to stop due to functional causes. That is, it does not result from a physical pathology, such as damage to ovaries; it can be reversed if the corresponding behaviours and physiological components are addressed [3]. The condition is usually driven by how the patient eats, exercises and how they experience stress. However, as you’ll see, HA may be far more complex than is conventionally thought.
HA is the most common cause of secondary amenorrhoea.
Amenorrhoea is a term for the absence of menstruation in women of reproductive age. There are dozens of select causes for amenorrhoea which can be either ‘primary’ which means periods have not started by age 16, or ‘secondary’ meaning periods have started, but then stop again [4].
The word “hypothalamic” in the name refers to the hypothalamus, a part of the brain that controls hormones among many other physiological processes. It communicates with the pituitary gland which then signals other endocrine glands like the adrenals and organs like the ovaries, both of which influence menstruation [5].
These complex systems are often referred to as the hypothalamic-pituitary-adrenal (HPA) axis and the hypothalamic-pituitary-ovarian (HPO) axis. HA can start to manifest when these systems, and others, are under so much stress that they start to malfunction [3].
Symptoms
If you have been missing your periods, you may be wondering if you have HA.
Some other common symptoms in HA include:
Low energy
Brain fog
Feeling wired/ anxious
Sleep difficulties or insomnia
Low libido
Feeling low/ emotionally numb
Vaginal dryness
Night sweats
Cravings
Loss of lean muscle mass
Joint pain
Susceptibility to injury
Frequent urination
Dry/brittle hair and nails
Hair loss
Feeling cold all the time
This is just a short list. HA symptoms are many and varied and usually occur due to prolonged deficiencies in the ovarian hormones, oestrogen and progesterone. Co-existing abnormalities in levels of other hormones, including thyroid, can exacerbate or create secondary symptoms. You may also experience side effects you cannot see or feel such as loss of bone density, and may need additional tests to uncover hidden symptoms. It is important you visit your doctor if you have any of these symptoms in order to get a valid diagnosis and not to self-diagnose.
For a longer list with more details on symptoms, please visit my Instagram post here.
Diagnosis
Diagnosis of HA is complicated because it shares similar symptoms with many other conditions and physiological changes, including mental health disorders, polycystic ovarian syndrome and perimenopause, among others. Doctors will need to rule out other possible causes before they can diagnose you with HA and therefore an HA diagnosis is referred to as a “diagnosis of exclusion”. Going through this process can be long and difficult but getting a proper diagnosis will be key in finding the most appropriate treatment options for you. [1] [6]
The diagnostic tests used to rule out other conditions usually include a physical exam, ultrasound, pregnancy test, blood tests and even a CT or MRI to check the brain to ensure there aren’t any obvious things wrong with your pituitary gland. You may also be offered a test called a “GnRH stimulation test” which will check specific hormones and is the most reliable test to confirm a diagnosis of HA once other possible causes have been ruled out [7]. In very rare cases your doctor may also want to check your DNA for chromosomal abnormalities.
I know from experience that it can feel overwhelming getting so many tests and waiting for a diagnosis so you can start treatment. Rest assured the more thorough the investigation, the more you’ll be armed with the correct information to work with.
Causes
Once you’ve had a diagnosis of HA, the next important step would be to address the underlying causes. The simple and most widely accepted explanation for HA is that your body simply has too little energy available and too much metabolic stress to function well. As a consequence, it will shut down your reproductive system to conserve energy. Your menstrual cycle is not necessary for immediate survival and shutting it down also protects you from getting pregnant, since this would put yet another strain on an already over-taxed body.
Energy imbalances, body composition changes, high volumes of exercise, a heightened experience of stress and a high-achieving approach to work can all contribute to the low energy availability and excess stress in women suffering from HA. Individuals may also typically fit a ‘personality profile’ of being highly conscientious with perfectionistic tendencies or a natural inclination to push themselves hard [3].
However, it’s important you don’t blame yourself if you fall into this category. We are living in a time where many of us have been forced to function in a society that values productivity and consumerism above all else, often against a backdrop of rigid aesthetic and health ideals. It’s only when our bodies start to rebel that we are forced to look at alternative narratives to find healthier and happier ways to lead our lives.
If you want more detailed information on the complexity of causes, please visit my Instagram post on the subject.
Despite the specific correlations between HA and over-exercise, weight loss, nutritional deprivation and an altered energy balance, in a high percentage of amenorrhoeic patients, the primary cause of missing periods has been identified in stress. Studies in both women and primates indicate that susceptibility to HA may also have a genetic basis with multiple potential genetic contributions to HA susceptibility, especially in the presence of stress.
Finally, it’s important to reiterate that the precise mechanisms underlying the development of HA are very complex and unclear. There is evidence that numerous neurosteroids, neuropeptides and neurotransmitters may be involved in the pathophysiology of HA. Particular attention has been paid to substances including corticotropin-releasing hormone, leptin, ghrelin, neuropeptide Y and beta-endorphin. Our understanding of the potential role of these (and other) neuroendocrine factors continues to evolve.
There are many more complexities to HA that have yet to be fully understood. I welcome calls for more research like the one Frontiers has recently published so diagnoses and therapies can be improved.
Long term dangers
The absence of menses has consequences beyond infertility. HA puts you at higher risk of low bone density and osteoporosis, cardiovascular disease and neurological issues. The higher risk is not due to the lack of menses per se, but rather the perturbation of the hormonal system that governs menstruation [8].
The disruption of this hormonal system is usually caused by major stressors on the body including malnutrition due to (conscious or subconscious) food restriction or poor dietary choices, chronic stress and an energy deficit, often accompanied by high volumes of exercise. All of these will also affect many other bodily systems and put them at risk. HA is your body’s way of giving you a ‘wake-up call’ to pay attention and to nourish it enough so that it can go back to proper functioning. For most post-pubescent, pre-menopausal women, this proper functioning includes a regular menstrual cycle and that is why restoring regular periods is essential both to be considered in recovery from HA and to the health of every woman.
Treatments
Traditional pharmacological treatments include hormone therapy, but these are only designed to mitigate the damage caused by the shutdown of the HPO axis, most notably a decrease in bone density. They cannot address the root cause. As the HPO system is complex, it is impossible to supplement the body with a medication that would create the correct hormonal cascade needed to keep the reproductive system functioning normally. The only successful treatment is using a wide range of therapies to address the behaviours that cause a lack of nutrients (food restriction) and over-expenditure of energy (intense exercise, overwork and stress) [3].
Nutrition therapy plays a key role in helping address the nutritional and energy deficiencies that may be caused by common symptoms of restrictive eating, a high-stress load and over-exercising. Female elite athletes have a high risk of HA and are usually under medical supervision including a sports dietician to ensure maximum nutrition to avoid adverse effects of overtraining [9]. Similar care should be given to any woman with HA as the underlying causes and consequences are the same. That is why it is essential you work with a registered nutrition professional who can help ensure your food and nutrient intake is sufficient for your body’s demands.
Women with HA often have many fears about food and body image. These psychogenic stressors play a very big role in developing HA so having appropriate psychological and emotional support while you try to change your habits is essential. Behaviours that put you at risk for HA can be successfully managed with different therapies and there is evidence that Cognitive Behavioural Therapy (CBT) helps women reverse HA and regain their periods [10].
Part of your success will be finding the therapies that help you reframe your thinking, retrain your behaviours, and reset your hormones. Yoga played a large role for me in my own recovery as it taught me to recentre and reconnect with my body in a healthy and unpressurised way. It allowed me to move my body in a way that didn’t overstimulate my sympathetic nervous system. This is the part of our nervous system that switches on when faced with acute stress and is also referred to as our ‘fight or flight’ response. Certain forms of yoga have the ability to stimulate the parasympathetic nervous system which is our ‘rest and digest’ response. The more you activate this calming part of your nervous system, the more your body has a chance to recover. Gentle walking, ideally in natural settings, is another exercise that is safe to do and will help you recover [3].
It is also possible to continue other forms of exercise, whilst in recovery. However, I do recommend that this is done with support from an experienced health practitioner or registered nutrition professional with experience of HA, who can explore your motivations for exercise with you and ensure you are meeting your energy and nutrient requirements to sustain that activity.
Final Thoughts
The above article scratches the surface of this complex and often mis-diagnosed disorder, but I hope it provides enough information to help you get started on your path to recovery.
The main takeaways I’d like you to remember are these:
HA is a functional disorder which is good news – this means it can be reversed by changing the way you function.
The more difficult news is that this is a very complex disorder driven by deeply-held beliefs and habits usually around food, body image, exercise and self-worth. This means you may have to put in a lot of work and time to undo the ‘habits of a lifetime’.
Finding the right team of health professionals to help you is essential.
Infertility is not the only health complication of HA, and the sooner you address it and recover, the less your risks will be for other illnesses later in life.
Practising self-compassion instead of blaming yourself for your condition is also essential to reduce your stress and increase your chances of recovery.
There is a need for further research – HA is not just about undereating and overtaxing your body.
If you would like to know more about how I may be able to help you with HA, please get in touch for a free call.
REFERENCES
1. Sophie Gibson ME, Fleming N, Zuijdwijk C, Dumont T. Where Have the Periods Gone? The Evaluation and Management of Functional Hypothalamic Amenorrhea. J Clin Res Pediatr Endocrinol [Internet]. 2020 Feb [cited 2023 Aug 25]; 12 (Suppl 1): 18-27. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7053439/ doi: 10.4274/jcrpe.galenos.2019.2019.S0178.
2. Rebar R. Evaluation of Amenorrhea, Anovulation, and Abnormal Bleeding. Endotext [Internet]. 2018 Jan [cited 2023 Aug 25]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK279144/
3. Ryterska K, Kordek A, Załęska P. Has Menstruation Disappeared? Functional Hypothalamic Amenorrhea-What Is This Story about? Nutrients [Internet]. 2021 Aug [cited 2023 Aug 25]; 13 (8): 2827. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8401547/ doi: 10.3390/nu13082827.
4. Klein D, Paradise S, Reeder R. Amenorrhoea: A Systematic Approach to Diagnosis and Management. American Family Physician [Internet]. 2019 [cited 2023 Aug 25]; 100 (1): 39-48. Available from: https://www.aafp.org/pubs/afp/issues/2019/0701/p39.html
5. Xie Y, Dorsky RI. Development of the hypothalamus: conservation, modification and innovation. Development [Internet]. 2017 May [cited 2023 Aug 25]; 144 (9): 1588-1599. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5450842/ doi: 10.1242/dev.139055.
6. Sowińska-Przepiera E, Andrysiak-Mamos E, Jarząbek-Bielecka G, Walkowiak A, Osowicz-Korolonek L, Syrenicz M, Kędzia W, Syrenicz A. Functional hypothalamic amenorrhoea — diagnostic challenges, monitoring, and treatment. Endokrynol Pol [Internet]. 2015 [cited 2023 Aug 25]; 66 (3): 252-60. Available from: https://journals.viamedica.pl/endokrynologia_polska/article/view/EP.2015.0033/29082 doi: 10.5603/EP.2015.0033.
7. Zimmer CA, Ehrmann DA, Rosenfield RL. Potential diagnostic utility of intermittent administration of short-acting gonadotropin-releasing hormone agonist in gonadotropin deficiency. Fertil Steril [Internet]. 2010 Dec [cited 2023 Aug 25]; 94 (7): 2697-702. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2944005/ doi: 10.1016/j.fertnstert.2010.04.019.
8. Shufelt CL, Torbati T, Dutra E. Hypothalamic Amenorrhea and the Long-Term Health Consequences. Semin Reprod Med [Internet]. 2017 May [cited 2023 Aug 25]; 35 (3): 256-262. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374026/ doi: 10.1055/s-0037-1603581.
9. Melin AK, Heikura IA, Tenforde A, Mountjoy M. Energy Availability in Athletics: Health, Performance, and Physique. Int J Sport Nutr Exerc Metab [Internet]. 2019 Mar [cited 2023 Aug 25]; 29 (2): 152-164. Available from: https://journals.humankinetics.com/view/journals/ijsnem/29/2/article-p152.xml doi: 10.1123/ijsnem.2018-0201.
10. Michopoulos V, Mancini F, Loucks TL, Berga SL. Neuroendocrine recovery initiated by cognitive behavioral therapy in women with functional hypothalamic amenorrhea: a randomized, controlled trial. Fertil Steril [Internet]. 2013 Jun [cited 2023 Aug 25]; 99 (7): 2084-91.e1. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3672390/ doi: 10.1016/j.fertnstert.2013.02.036.
DISCLAIMER:
All content found on this website has been created for informational and educational purposes only. It is not a substitute for individual medical or mental health advice, diagnosis or treatment.
Always seek the advice of your doctor or another qualified health provider with any questions you may have regarding a medical condition or eating disorder recovery. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Remember that we are all unique and what works for one person may not work for another.