When Normal Tests Results Really Aren’t Normal

Have you reported symptoms to a doctor, they run some labs or other tests, and the results are normal? This happened to me recently. I did something new. I consulted with another specialist.

My headache specialist referred me to a sleep specialist in his practice. I was nervous but decided I would see what his referral thought. People with migraine or cluster headache have a higher chance of having sleep disorders such as restless leg syndrome (RLS) and obstructive sleep apnea. He suspected my normal results were not so normal.¹

What did my at-home sleep study conclude?

My sleep specialist consult asked new questions. The recent "at-home" sleep study was done after a friend pointed me to research showing possible connections between cluster headache and sleep apnea. He reviewed my normal results. Looking over the sleep report, he had a lot of questions. His conclusion was the test wasn't normal, but inconclusive.

So next we looked at my ferritin levels. When he looked at my old test, he was concerned and requested I get a fresh test done. He explained that sleep specialists know when ferritin is below a specific number it’s a known cause for RLS.²

No wonder I had so many muscle aches and restlessness. Ferritin is how the body stores and uses iron. I left the appointment with an order to re-check my ferritin levels and an order for an in-lab sleep study.²

Did in-lab sleep study have the same results?

First, my ferritin levels were checked and the lab reported they were normal. However, my doctor knew something the lab did not recognize. My levels are extremely low. He immediately ordered a prescription for RLS and instructions for me to increase my iron supplement.

I assumed the in-lab sleep study would come back normal. Even the attendant was curious because she could see I had the at-home sleep study results showing normal. She commented to me, “I guess your doctor doesn’t believe the results?”

The next morning there was no indication she’d seen anything other than what she said was “a little bit of snoring.” I didn’t have to wait long for my results to come back. The report diagnosed me with obstructive sleep apnea. My numbers were right on the borderline for my insurance, but given my comorbid conditions (migraine and cluster headache) the recommendation was CPAP.

I scheduled an appointment with my virtual sleep doctor, and he confirmed the results and felt CPAP was the way to go.

How were the normal test results affecting me?

My first sleep study was almost 20 years ago, and it was normal. I didn’t sleep well, and the doctor was dismissive. I assumed my not sleeping well, daytime sleepiness, and fatigue were just things I had to live with. One of the curious findings in my sleep study this time around was I never went into deep sleep. A big reason why was because of my apnea. I'd been trying so many things to fix my sleep, but this was something I couldn't fix on my own.

Admittedly, it was really hard pursuing this again given past test results, comments from my general practitioner about my fatigue, and just always seeing those normal results. The times I had requested a sleep study and they had normal results made it even harder.

However, my muscle aches and RLS are both better managed. I’ve only had my CPAP for a few days and am adjusting, but I already feel like my body is sleeping better. I know it will take time to adjust to wearing a mask and for my body just to adjust to being able to go through sleep stages.

What have I learned?

Emotionally, those normal test results are difficult. It’s taken time for me to try to separate the fact that normal results don’t diminish the symptoms I feel. It's just that we don’t know why I have them yet. It was hard to go through some of these tests again, but I am glad I did. I have also seen that who reviews the test results can make a difference.