Do I have Hypothalamic Amenorrhea or PCOS?
It is believed that Hypothalamic Amenorrhea accounts for about 30% of the secondary amenorrhea cases. Still, the condition seems to be quite unknown among practitioners and it is often misdiagnosed as PCOS. So how can you know if you have Hypothalamic Amenorrhea or PCOS? I will provide answer to this question in this post.
Hypothalamic Amenorrhea (HA) is caused by under-eating, over-exercising, stress or a combination of the three. PolyCystic Ovary Syndrome (PCOS) often presents with symptoms such as weight gain (or difficulty losing weight). So the conditions sounds more or less like opposites. Then why are they mixed up (or rather how come Hypothalamic Amenorrhea is misdiagnosed as PCOS)? I think the main reason is because both PCOS and Hypothalamic Amenorrhea can show polycystic ovaries on ultrasound (the ‘cysts’ are actually developing ovarian follicles, and both conditions can be associated with an increased number of these follicles). So if your healthcare provider is basing the diagnosis solely on ultrasound and the fact that you are missing a period, he or she might arrive at PCOS.
The misdiagnosis can be really problematic because the treatment for PCOS is often to eat less (carbs) and loose weight while the treatment for Hypothalamic Amenorrhea is to eat more (carbs), exercise less and rest more. This means if you are suffering from Hypothalamic Amenorrhea and follow the advice from your doctor based on a PCOS diagnosis, you risk to make your condition even worse.
How do we avoid this? I think the simplest way to distinguish between PCOS and Hypothalamic Amenorrhea would be to look at lifestyle factors. How is your training routine? Are you restricting your food in any way? Are you stressed? If that's the case, there is a very very high probability that you have Hypothalamic Amenorrhea, not PCOS. You can also proceed and confirm with some lab works. The first thing to look at would be the ratio between Luteinizing Hormone (LH) and Follicle-Stimulating Hormone (FSH). The LH to FSH ratio is low in Hypothalamic Amenorrhea and high in PCOS. Another thing that can help distinguish the two is to screen for high levels of androgens or male hormones. This will only be present in PCOS.
There are in fact other characteristics that differ between Hypothalamic Amenorrhea and PCOS. In the table below I have summarized them. Feel free to reach out to me if you feel uncertain or need advise prior to or after contact with your healthcare provider.