If you’ve lost your period, you may have noticed that it’s tough to get the right diagnosis.
First, you’re told you have the hormonal condition PCOS, and then you’re told that maybe you don’t. And then you’re told you might have hypothalamic amenorrhea, and now you’re really confused.
This is the blog post for you.
PCOS is the state of having irregular periods because of insulin resistance and elevated androgens (male hormones).
Hypothalamic amenorrhea (HA) is the loss of periods because of undereating carbs or undereating generally.
In some ways, the two conditions are quite different—almost the opposite. PCOS is caused by too much sugar, and HA is caused by too little carbohydrate or too little food.
But in other ways, PCOS and HA are similar enough that your doctor might mistake one for the other. And, PCOS can change to HA when you undereat.
Maybe you don’t have PCOS
Was your PCOS diagnosis based on an ultrasound or a high AMH (anti-mullerian hormone) blood test? If so, you may seriously need to rethink that diagnosis. Polycystic ovaries and high AMH occur with PCOS, yes, but they also occur with HA. One study concluded that relying on AMH for diagnosis routinely leads to HA being misdiagnosed as so-called “lean PCOS.”
Being told you have PCOS when you don’t is a problem because it subjects you to a lot of unnecessary treatment and worry. The British Medical Journal says that a PCOS diagnosis can “do more harm than good.” They recently published an analysis called: Are expanding disease definitions unnecessarily labeling women with polycystic ovarian syndrome? It explores all the ways that the current diagnostic criteria lead to overdiagnosis, and they make three points:
- Many of the signs and symptoms of PCOS also occur in normal women. That includes acne and hair loss.
- It is almost impossible to diagnose PCOS in teens because they naturally have polycystic ovaries and longer cycles.
- Many women “outgrow” a PCOS label by the time they reach their 30s.
The right way to test for PCOS
If you really want to know if you have PCOS, please follow these two steps.
Step 1. Do you have elevated androgens or male hormones? For example, are they measurably high on a blood test? Or do you suffer significant hirsutism (facial hair)? Hirsutism is the most reliable symptom of androgen excess. Other symptoms, such as post-pill acne, are NOT diagnostic of PCOS.
Step 2. Has your doctor ruled out other causes of elevated androgens? That includes a condition called congenital adrenal hyperplasia, which accounts for up to 9 percent of cases of androgen excess and is frequently misdiagnosed as PCOS.
If you DO have elevated androgens, then you probably do have PCOS. Your very next step is to figure out if you have insulin resistance. Because then you’ll know how to treat your PCOS.
Do you have insulin resistance?
First things first. A blood test for sugar or glucose is NOT a test for insulin resistance. Instead, you need a test for the hormone insulin—preferably with a test called “insulin assay with oral glucose tolerance” or a simple “fasting insulin.”
If you DO have insulin resistance, then you need to treat that. And your first step is to quit sugar. Please see Why I Ask Some Patients to Quit Sugar (and What I Mean by Sugar).
If you don’t have insulin resistance, then you’re straight back to the first question: Do you truly have PCOS? If you’re certain that you do, then you have a non-insulin-resistant type of PCOS. Read 4 Types of PCOS. Treat the Cause.
When PCOS becomes hypothalamic amenorrhea
Finally, we come to the trickiest part of all. Maybe you DID have insulin-resistant PCOS. You quit sugar and quit carbs, and that was the right thing to do….for a while. Until it wasn’t.
Because here’s the thing: If you have the genetic tendency to PCOS, you can swing from PCOS to HA. And you can do so over just a few months of undereating. Which means… you can go from lack of periods due to insulin resistance all the way to lack of periods due to undereating carbs—without ever seeing a regular period!
The take-home message is this: Please be careful with a low-carb diet. Yes, please quit sugar, because that is the best treatment for insulin resistant PCOS.
But please do not forgo potatoes and rice only to binge on dates and “Paleo desserts.” And therefore never manage to successfully reverse insulin resistance. See Why I Ask Some Patients to Quit Sugar (and What I Mean by Sugar).
And please do not restrict starch so severely that you lose your period. See Are You Eating Enough to Get a Period?
If you’re avoiding carbs because someone saw polycystic ovaries on ultrasound, you could be completely on the wrong track.
Not sure if you have PCOS or hypothalamic amenorrhea? Ask me in the comments.