Because of its many types, PCOS can be hard to diagnose sometimes. It is not a single set of symptoms, it does not present the same for everyone, not even in bloodwork or on ultrasound. It is estimated that thousands of women go undiagnosed because of this. But there is also the other end of the spectrum – those who wrongly receive this diagnosis. The one condition that often gets misdiagnosed is hypothalamic amenorrhea.
What is hypothalamic amenorrhea?
I’m gonna start the definition session by discussing secondary amenorrhea. This is when a woman’s period disappears for 3 months IF her periods were regular before, or for 6 months if her periods were irregular. The most common form of secondary amenorrhea is hypothalamic amenorrhea.
Hypothalamic amenorrhea, in short HA, is usually caused by stress, undereating, very low body weight. It is usually known as the amenorrhea of athletes, but also of women suffering from an eating disorder like anorexia. And this is, sadly, where the confusion starts and why this issue can go misdiagnosed as PCOS in many cases.
You do not have to be underweight or an athlete to develop hypothalamic amenorrhea!
That’s right. HA can happen even to women who have a normal body weight and who are not athletes. Each body is different and reacts in a particular way to stimuli. One person may feel nothing from normal day job stress, taking care of the kids, going to the gym, and doing all the housework. Another may feel completely exhausted from only 2 or 3 of those activities and end up in full-blown HA if she joggles all activities for too long.
I feel like the easiest way to explain HA is as a hormonal imbalance of modern women, who try to do it all – career, private life, workouts, hobbies. It can also be an issue for those who are constantly in high-stress environments at work. Again, what high stress means is something that depends on each body. Maybe your body feels that studying hard at university and having a job in the evening is high stress. And that may feel like nothing for another woman. Assess how YOU feel. Do NOT compare with other women.
What are the symptoms of hypothalamic amenorrhea?
Except for the obvious symptom – a missing period – there are other signs that you have HA.
- low libido
- depression, anxiety, severe mood swings
- low energy
- feeling cold all the time
Causes and How It Is Diagnosed
Now that we know HA is not all about weight or physical activity, we should jump a bit more into its causes. There are a few cases where hypothalamic amenorrhea is actually due to chromosomal abnormalities. These are rare and usually present themselves early on and no matter what you do you will not pinpoint another cause for your missing period.
In many instances, HA is considered a diagnosis of exclusion. Meaning you will have to consider all other possible causes of amenorrhea and when nothing fits, HA is all that’s left. There will also be a stressor that caused it, that should be evident at a closer look. It might be a change in your lifestyle, like starting a new workout regime. But it might also be changing your job, the risk of losing your current job, moving across the country, the death/illness of someone close to you. There’s also the “positive” stress, that can still be perceived as too much by the body. A good example is traveling, especially when you change timezones and your body needs to adjust. Sometimes the onset will be quick and usually in these cases, reversing HA will also be fairly easy, assuming the initial stressor goes away.
Hypothalamic amenorrhea is, first and foremost, a diagnosis of exclusion!
More complex ways to diagnose include bloodwork, ultrasound, and possibly an MRI or CT scan. The last two are usually required to make sure no anomalies or tumors of the pituitary gland exist.
An ultrasound will most likely be done by your OBGYN to look for other issues that might cause secondary amenorrhea. And here is where the confusion and mix up with PCOS can start to happen. Your ovaries might have a polycystic aspect. Which many doctors will rush into diagnosing as PCOS.
Bloodwork might also get weird. Estrogen and FSH may be low, but it’s not a must. The difference that is usually most prominent between hypothalamic amenorrhea and PCOS is LH (luteinizing hormone). In PCOS, LH is elevated in many cases. In HA it is almost always low. Again, you see there’s no one size fits all and as much as I’d like to, I can’t get rid of the word “almost” because there are exceptions to the rules.
Treatment of hypothalamic amenorrhea vs PCOS
Here is where the two conditions get very different and why it is CRUCIAL to receive the proper diagnosis. In PCOS often times you will be required to lower your carb intake, to cut out sources of inflammation such as dairy, gluten, and sugar. Of course, it depends on the type of PCOS you have, but those approaches will generally be good for everyone. If they won’t really help, they definitely won’t harm.
With hypothalamic amenorrhea that approach might be very detrimental. I’m not saying HA lets you eat all the junk. But it definitely allows you to indulge. Like with PCOS, once you’ve determined you have HA, you should find the cause. If it is low body weight, excessive dieting and lots of working out, you’ll need to go the opposite way. More calorie-dense foods, less exercise. If you can’t reduce the exercise – maybe it’s your job if you’re an athlete or a trainer – then focus on food. You need to eat enough to sustain the amount of exercise you’re doing. If in doubt, a nutritionist might help.
Recovering from HA might mean you need to gain some weight
Something many women struggle with when healing HA is accepting the fact that true recovery, a.k.a. getting their periods back, might mean gaining weight. No, you will not become overweight. But you might need to weight more than you did when your period vanished.
Why does this happen? It’s easy really. It goes back to when we were living in the wild. If your body perceives it is being famished, it will go into survival mode, thinking you’re at risk since there is no more food for you to eat. One of the first things that is cut off the list is reproduction. Because if you don’t get enough food to stay alive, there’s no way your body can sustain a pregnancy. And there’s no way you will be able to feed for a newborn. It sounds dramatic, I know, but it is how our bodies work.
If stress is the issue, you might not need to gain weight, but definitely don’t go restricting. You see why a wrong PCOS diagnosis, in this case, will do more harm than good. It might get you into restrictive dieting mode. For more information, check out https://www.noperiodnowwhat.com/, a fantastic resource for hypothalamic amenorrhea.