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Writer's pictureLucy

What Does a Hypothalamic Amenorrhea Diagnosis Really Mean?

After 18 months with no period, I finally got my hypothalamic amenorrhea diagnosis from a doctor at the University of Michigan. And unfortunately, although I'm immensely grateful that this doctor actually said the words "hypothalamic amenorrhea" to me - because I hadn't heard them before - that's essentially as far as our diagnostic discussion went.


I remember googling the condition to find out more when I got home from that visit.


If this sounds like you, I'd like to pause and say a few things:

  1. I'm so sorry you haven't been better guided thus far. Doctors often praise women with low BMIs or athletic lifestyles without addressing or diagnosing their period problems. This cultural aesthetic is not okay or healthy - it's a fatphobic epidemic.

  2. Welcome - you're in the right place!

  3. If you're anything like me, getting diagnosed with hypothalamic amenorrhea will actually mark the beginning of an amazing, beautiful transformation journey for the better. You. Got. This.

Okay, now that we're feeling confident, let's talk HA basics.


Firstly, you need to understand what HA or functional hypothalamic amenorrhea is:


Essentially, due to your high stress levels, low calorie levels, or intense exercise (or any combination of the three) your hypothalamus suppresses the release of gonadotropin releasing hormone (GnRH) in that all-important feedback loop that exists between the hypothalamus (brain control center), pituitary (hormone messenger) and ovaries during the menstrual cycle. If GnRH isn't released, follicle stimulating hormone (FSH) and luteinizing hormone (LH) aren't released either, and the whole cycle stalls out. It's like the your body forgot to put the keys in the ignition. Here's the gist: You don't ever ovulate if you're experiencing HA.


The primary outcome of completely stopping ovulation and the menstrual cycle all together is a big-time drop in estrogen and progesterone. This is the same kind of consequence that menopausal women deal with (you're basically menopausal if you have HA).


And while it should intuitively sound not good to have menopausal-type hormone levels as a fertile young woman, I should pause here again and just emphasize - because this is real a thought I had:

Hypothalamic Amenorrhea does not equal a freebie form of birth control and/or a free pass to get out of annoying period problems. Cycling is a vital sign, like your blood pressure or heart beat. HA is a major indication that your body is prioritizing certain organ functions over others to keep you alive.

To make the long-term and serious complications from this explicitly clear, you can expect a couple of big ones if you have HA:

  1. Infertility: You can't get pregnant when you're not cycling <- probably obvious, but can't be overstated. This doesn't mean you're permanently infertile. But you need to recover your cycle to make a baby.

  2. Cardiovascular Disease: You're significantly more likely to develop cardiovascular disease, and at a younger age*. A study of 80,000 women found the linkage between women who had experienced anovulation at young ages with an up to 50% increase in likelihood for early cardiovascular disease, due to atherosclerosis (build up of fats + cholesterol in arteries).

  3. Early Menopause: This same study linked uterine atherosclerosis to greater likelihood of early menopause among this population*.

  4. Osteoporosis: One of the most discussed health complications in HA patients is earlier onset and greater likelihood of osteoporosis. Adequate estrogen levels are incredibly important in helping generate new bone cells and reduce decay in existing bone cells. In one particularly harrowing study outcome it was estimated that "the mean BMD of a young women with only six months of hypoestrogenemia is equivalent to that of a woman 51.2 years of age.*" And all I can say is...that's spooky.

  5. Mental Health: This complication is a two-way street, as so many HA patients have stress as an underlying cause of their amenorrhea. But, studies have shown that HA patients are more likely to have depressive and anxious thought-patterns, poor self-image, and mood disturbance*.

If this sounds "doom and gloom" it's supposed to! But remember, functional HA is a temporary issue that you can recover from with greater rest and recovery incorporated into your life. For many women (me included) HA recovery offers a beautiful opportunity for lifestyle and mental health transformation. And I'll get into that fun stuff in my next post.


For now, I hope this one serves as a reminder or a wake-up call to please take your HA diagnosis seriously.


*Research:

Hypothalamic Amenorrhea and Long-Term Health Consequences:

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