Hypothalamic Amenorrhea & Disordered Eating: My Journey
TW: Eating disorders (I keep it mostly positive and this post contains important information relevant to disordered eating, but it could still be potentially triggering)
Earlier this week, I finally received a diagnosis validating everything I've been experiencing over the past 4 years.
I've always associated this condition with anorexia and over-exercising, so I did not think it could apply to me. After further research over the last few days, I'm now convinced this is the accurate diagnosis I've been looking for.
PSA: Hypothalamic amenorrhea is more than missing periods.
Feeling cold all the time. Peeing a million times a day. Loss of interest in people and socializing. Loss of affection. Loss of emotions. Non-existent libido. Apathy. Feeling dead inside. Irritability. Obsessiveness. Brain fog. Constantly thinking about food. Unexplainable depressed mood.
This weird collection of symptoms that the doctors could not make sense of for the past 4 years could all be explained by HA.
Functional hypothalamic amenorrhea is caused by chronic stress and chronic energy deprivation. This is why it is often seen in people who have anorexia or exercise addiction. But you don't have to be underweight to develop HA. I wish I knew this earlier.
Hypothalamic Amenorrhea & Disordered Eating
People with HA often have a history with disordered eating. Eliminating food groups and avoiding certain macronutrients (e.g. carbs, fat) can contribute to the problem. I have been on a low fat diet and have had a long history with disordered eating. That could be a story on its own.
I have told myself I have recovered from disordered eating because I no longer obsessively count calories, but deep inside I know I still don't have a normal relationship with food.
This is a wakeup call. I've struggled with disordered eating and body image issues for over half my life, and this is likely what led to HA. I've been semi-recovered for the past few years, pretending to have a comfortable relationship with food while having orthorexic (healthy eating obsessed) tendencies.
Now it is time to work towards true recovery. I am terrified but hopeful.
Getting a Diagnosis
It took 4 years for me to get a diagnosis of hypothalamic amenorrhea. It would have been tremendously helpful if I had known that you do not have to be “underweight” or an athlete to develop hypothalamic amenorrhea. Even a weight loss of little as 10lbs can be enough to trigger HA, especially when combined with other factors such as chronic stress, disordered eating patterns, and a genetic predisposition.
In my journey to receiving this diagnosis, I had seen a gotten a pelvic ultrasound (to rule out primary ovarian failure and also check my bladder), seen a urologist (for the frequent urination), seen a gynecologist, seen a naturopath, gotten blood hormone testing, gotten a brain MRI to rule out a pituitary tumour, gotten thyroid medication, seen two endocrinologists, and gotten an Insulin Tolerance Test (ITT) to check my pituitary functioning. It is after the ITT that my endocrinologist settled on a diagnosis of hypothalamic amenorrhea; it is a diagnosis of exclusion.
The naturopath was the first to clue in that something might be off with my hormone levels and was the first to suggest I need to eat more fats. This led to getting my hormone levels tested, finding out I had extremely low LH and FSH (low LH and FSH are signs of hypothalamic amenorrhea), and then being referred to an endocrinologist. Though, after my initial appointment with the naturopath, I never went back because of my fear of gaining weight and stubbornness to give up my low fat diet. I dismissed her advice as woo woo non-sense, but now I realize I was wrong. I am now finally willing to gain weight and drastically increase my fat intake.
Four years of no periods. It’s likely I may have had HA for longer and did not know because of being on the birth control pill which induces artificial periods. Often, people with HA do not realize that they are not naturally producing periods until they go off birth control and their periods don’t come back.
If you are a female and are missing periods, do not delay in seeking treatment. As convenient as it may be to not have a period, low estrogen stopping menstruation negatively impacts bone health, cardiovascular health, and mental health. Even a few months of absent periods can lead to bone density loss and an increased risk of osteopenia and osteoporosis. Low estrogen levels are also implicated in increased risk of cardiovascular disease and poor mental health (which I have definitely experienced).
The Psychological Symptoms of Hypothalamic Amenorrhea
While the physical symptoms of HA like feeling cold all the time and frequent urination are an annoying inconvenience, the psychological symptoms are what truly disturbed me to my core.
The psychological symptoms of HA are lesser known than the obvious physical symptoms, but I have concluded that the psychological symptoms I have been experiencing coinciding with the onset of my amenorrhea are related. This conclusion is not drawn from scientific research, but more so from deep googling about personal experiences with HA (including blogs like this one) and conversations in HA support groups that support these shared experiences.
The psychological symptoms that I experienced include depression, food obsession, general obsessiveness, apathy, social disinterest and withdrawal, lack of emotions, lack of affection and “love” feelings, anhedonia, and decrease in empathy.
The depression that came with my hypothalamic amenorrhea was difficult to associate with the condition (or at least, convince my doctors that they were related) because of my long history with clinical depression. But the HA depression felt different from the major depression I experienced for many years. The HA depression felt more flat, unemotional, and inexplicable. It felt very physiological. Everything could be going right with no negative thinking, but my mood would still be depressed and flat. On the other hand, when I was experiencing major depression, my thinking was extremely negative and my negative emotions were very strong and painful.
The Food Obsession
I became obsessed with food. I would constantly be thinking about my next meal, making food, eating food, etc. My conversations with others revolved around food - I would have no interest otherwise. I remember telling Kevin that I could not feel any pleasure or joy in life with the exception of food. It felt like the only thing I would look forward to in my day were my meals. I would become extremely touchy, irritable, and anxious if anything or anyone disturbed me during my meals when I would become hyperfocused on my food. Now that I know hypothalamic amenorrhea is a symptom of your body being in survival mode, this makes complete sense.
Apathy and Lack of Emotions
This was THE most disturbing symptom of all. As I have always identified as someone who was extremely sensitive, empathetic, and passionate, the disappearance of my emotions threw me into an identity crisis. I felt like a shell of a person with the death of my identity. It truly felt like I died and that I was merely existing. A consciousness that was fizzling away.
I lost my interests and passions. I had no interest in socializing or desire for social connection. Even though I have always been a shy and introverted person, this was different. Even introverts want to connect with others - a basic human need, but I stopped having this need. Conversations became painful, awkward, and forced as I pretended to have interest in the conversations while being emotionally flat. It strained my relationship with Kevin as I could hardly feel affection. I even lost my affection towards animals, even though I had always been an animal lover. I questioned whether this is what psychopaths felt like. I stopped feeling human, and it truly disturbed me.
This is my why. This is why I am willing to do anything to recover. I would give up a limb to feel normal again.
The Recovery Plan
My plan for recovery includes eating all the things, facing my fear foods, recovering from disordered eating, and gaining enough weight to kick my body out of survival mode - even if that means overshooting and gaining more than what I am currently comfortable with. Just a week ago, I would have thought this recovery plan was bogus and brushed off the idea as ridiculous. Afterall, I am already at a “normal” weight. But now that I know there are others who have had the same symptoms of hypothalamic amenorrhea and have cured themselves by going “all in”, relaxing, and eating without restraint, I am determined to do the same. It’s at least worth a shot. And again, you do not need to be “underweight” to develop hypothalamic amenorrhea.
If my symptoms resonate with you, I highly recommend doing more research on hypothalamic amenorrhea, seeking out hormone testing (make sure your LH and FSH levels are taken), and reading the book, “No Period. Now What?”
If I can help even just one person get a correct diagnosis faster or work towards eating disorder recovery, opening up about my own experience would have been worth it.
If you want to follow me on my HA and disordered eating recovery journey, I’ll be posting about it on my personal Instagram account @noperiodbrain.
Book & Website: No Period. Now What?
Facebook: HA Support Group