Getting a PCOS diagnosis involves multiple appointments. At one or more of those appointments, lab tests are done. This is to look for wonky levels, which is pretty common to see in people with this syndrome.
There are many people, however, who have lab tests that show normal numbers. This is quite confusing for some so let’s go ahead and talk about it!
What PCOS is
If you are reading this post, you probably already know what PCOS is. A quick overview isn’t going to hurt anyone though…
PCOS stands for Polycystic Ovarian Syndrome. It was discovered back in 1935 by two gynecologists’ named Stein and Leventhal. Because of this, PCOS used to be called Stein-Leventhal syndrome.
This syndrome is characterized by a hormonal imbalance that occurs due to ovarian disfunction. While various science/medical sites will give slightly different numbers, it is pretty safe to say that it effects up to 12% of people in the US. Worldwide, the rate is said to be up to 20% of people.
There may be even more people that have PCOS but it tends to go underdiagnosed due to a variety of reasons.
The symptoms can vary in people as we are all different, but here are the common ones:
- Messed up periods- Missed, too long, too short, too many etc,
- Fertility issues-Problems ovulating and/or staying pregnant.
- Hirsutism- Ranges in severity.
- Acne and oily skin- Ranges in severity.
- Hair loss and/or thinning
- Weight issues- Sudden weight gain, difficulty losing weight, obesity, overweight etc.
- Excess fat around the midsection.
- Ovarian cysts
- Depression and/or anxiety
- Bloating and/or swelling
- Fatigue
- Brain fog
To get an official diagnosis, there are several steps. These include meeting with the gynecologist, meeting with an endocrinologist, getting a pelvic exam, getting an ultrasound and getting lab testing done. It can take quite a while for some people.
Current treatment options include the following:
- Fertility treatments
- Birth control
- Diet and exercise
- Weight loss
- Metformin (an antidiabetic medication)
- Acne treatments
- Anti-androgens
- Minoxidil for hair loss
The exact cause of PCOS are unknown right now. Medical professionals think there could be several factors that come into play which includes high amounts of androgens, genes, environment and/or diet/lifestyles.
Comorbid conditions include:
- Type 2 diabetes
- Pre-diabetes
- Metabolic syndrome
- High blood pressure
- Sleep apnea
- Obesity
Lab tests and “normal” results
When it comes to the lab tests for a PCOS diagnosis, there is a whole slew of things that get checked. Below is a list of them along with what are considered to be normal results for each:
*The results are for women who are not yet in menopause*
- Total testosterone- 8-60 ng/dl; levels are commonly higher than normal in people with PCOS.
- Estrogen- 15-350 pg/ml; levels are commonly normal in people with PCOS.
- Sex hormone binding globulin (SHBG)- 18-144 nmol/L; levels are commonly lower in people with PCOS.
- Anti-Mullerian hormone (AMH)- 1.5-4.0 ng/ml; levels are commonly higher in people with PCOS.
- Follicle stimulating hormone (FSH)- 1.1-17.2 (depends on where you are in your menstrual cycle); levels are commonly normal in people with PCOS but can be lower than normal as well.
- Luteinizing hormone (LH)- 1.09-17.2 IU/L; commonly higher in people with PCOS.
- DHEAS- Highest range is in 18-19 year olds (145-395 mcg/dl) and it falls as people get older; levels are commonly higher in people with PCOS.
- Androstenedione- .7-3.1 ng/ml; commonly higher in people with PCOS.
- TSH (thyroid)- .5-5 mlu/L; usually normal but can be high in people with PCOS.
- Cortisol (stress hormone)- Normal morning results range from 10-20 mcg/dl and afternoon results range from 3-10 mcg/dl; levels are commonly normal in people with PCOS.
- Prolactin- <25 ng/ml; levels are usually normal in people with PCOS.
- 17-hydroxyprogesterone (helps produce cortisol)- 35-290 ng/dl; levels are commonly normal in people with PCOS.
- HDL (good cholesterol)- >60 mg/dl; levels are commonly lower in people with PCOS.
- LDL (bad cholesterol)- <100 mg/dl; levels are commonly higher in people with PCOS.
- Total cholesterol- 125-200 mg/dl; levels are commonly higher in people with PCOS.
- triglycerides- <150 mg/dl; levels are commonly higher in people with PCOS.
- A1c (glucose)- <140 mg/dl; levels can be high if one has diabetes along with PCOS.
- Blood pressure- This is not a blood test but it is an important marker to look at. A healthy result is 120/80 or less.
All of these tests are done to not only check for the possibility of PCOS but also to rule out other conditions that can mimic it. These include hypothyroidism, hyperthyroidism, CAH (congenital adrenal hyperplasia) and hyperprolactinemia.
Why are my results normal?
So, you get your results from the tests back and all your numbers are in the normal range. Why and how is that possible when you have PCOS symptoms?
There could be a few reasons as to why normal results may occur. Lets take a look at them in the following list:
- Tests are not sensitive enough- It is quite possible that some of the tests don’t have the sensitivity level to detect a problem.
- Testing errors- Mistakes happen!
- Personal body set points- Despite the reference ranges that are given for certain things, everyone is different. One’s levels may be too high or low for their body despite it being in the “normal” range.
- Your body is overreacting- It could be that even though your results are “normal,” your body thinks it is too much or too little for some reason causing you to experience the PCOS symptoms.
- The tests just aren’t right- It could be that these lab tests that are done when one is seeking a PCOS diagnosis are not the right ones needed to detect the syndrome.
Having normal results but showing symptoms for a condition is not unique to PCOS as this happens for other diseases/syndromes as well.
So, how else do you get a PCOS diagnosis?
Doctors have a set of three criteria they go by when it comes to diagnosing a patient with PCOS. They are as follows:
- Signs of excess androgens- If you do happen to have an abnormal level of androgens per a blood test or you have the physical manifestations (excess hair, acne, balding etc.) of an excessive amount of androgens- you meet this specific criteria.
- Ultrasound showing ovarian cysts- If your ultrasound shows that you have have cysts all over one or both ovaries- you meet this criteria.
- Missing or irregular periods- If you have an absence of periods or they don’t come in a predictable cycle- you meet this criteria.
For a PCOS diagnosis, only two of the above three criteria needs to be met. If you look at the first criteria, you will see that one doesn’t have to get abnormal blood test results to meet that criteria.
If a person only meets one of the criteria for the diagnosis, a doctor will want to conduct further tests. This is because there could be another medical condition and if so, it needs to be properly treated.
It is important to tell your doctor the whole story of your symptoms and if one isn’t listening to you- try to find another one that will. You deserve to be heard and get the best medical care possible for this tough, sometimes devastating condition.
My test results
When I was in the process of seeking out a PCOS diagnosis, I expected my hormone results to be extremely wonky. After all, I had (and still do) bad acne and hairiness. It was really surprising to me when my results showed completely normal levels of everything.
I honestly was expecting my testosterone level to be over 100 ng/dl- not the 30 ng/dl my patient portal account showed. I was really confused by this due to my signs of androgen excess. The endocrinologist sat down to explain to me that I met two of the criteria for the diagnosis and it didn’t matter what my test results said.
I was happy to have my suspicions about having PCOS confirmed. I do have to admit that it hasn’t helped me much.
I just have yet to find the right treatment(s) for myself.
So yes, normal results can happen
A PCOS diagnosis can be a long road. Although there are a lot of things that a doctor will test your blood for, they obviously aren’t able to tell the whole story of your health.
You know your body the best so advocate for yourself!
Thanks for reading!
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