Nobody Can Figure out the Cause of My Hair Loss

When Nobody Can Figure out the Cause of Hair Loss

There are some pretty challenging and unusual presentations of hair loss. Often I hear patients tell me that they have spent years trying to figure out the cause of their hair loss and nobody has been able to figure it out. While some of these truly are mysteries, I’d venture to say that the vast majority have simply not had a complete work up.

Mystery Causes of Hair Loss

I’m willing to say that a patient truly has a mystery cause of hair loss if four conditions are satisfied and the diagnosis is still not known:

CRITERIA 1: The patient has seen a hair specialist.

This is important. Tough cases need the expertise of someone who handles tough cases. When the heart does not seem to work right, one needs a heart specialist. When the kidneys are not doing what they should, one needs a kidney specialist. When the car breaks down, one needs an expert mechanic - the advice of the neighbours just doesn’t cut it. It only follows that when hair is not growing as it should, one needs a hair specialist. It’s simply but overlooked. One can not say that their diagnosis is a mystery case if they have not seen the right specialists.

CRITERIA 2: The patient has had blood tests for varioius contributors of hair loss.

If the cause of hair loss is unknown and blood tests have never been ordered, then one can not say that the cause is unknown. Every single patient with hair loss needs to be evaluated for what blood tests are appropriate to order. Most people with hair loss benefit from a basic hemoglobin (CBC), a thyroid study (TSH), and assessment of iron status (ferritin). But the list of potential tests that could be ordered is incredibly long. The exact tests that one needs depends on the information that the physician obtains during the visit (i.e. the so called medical history). A variety of hormonal test, autoimmune tests, minerals, and tests for sexually transmitted diseases could be appropriate.

CRITERIA 3. The patient has had a biopsy.

If a patients feels their case is a mystery case and they’ve never had a biopsy, then it can’t be called a mystery case. If a person is coughing for several months and he or she has never had even a simple chest x-ray, it’s inappropriate to say that nobody can figure out the cause of the cough. A variety of tests are available to determine the cause of the cough and unless a person has had those tests, it’s not appropriate to say it’s a medical mystery.

Let me say at the outset that not everyone needs a scalp biopsy. If the cause of hair loss can be determined after listening to the patient’s story of their hair loss, examining the scalp and examining the blood tests, they one does not usually need a biopsy. Most patients who step into my office don’t receive a biospy. i don’t need it to diagnose the reason for their hair loss.

With that said, it’s important to realize that if the cause of hair loss is still unknown after listening to the patient’s story of their hair loss, examining the scalp and examining the blood tests, then one needs a scalp biopsy. it’s that simple.

CRITERIA 4. The patient has had photographs taken one year apart.

Criteria 4 comes as a surprise to some people but to truly say the cause of hair loss is a ‘medical mystery’, (i.e. biopsies, blood tests are not helpful), I need to see photos of the scalp one year apart. These can either be photos the patient brings in or photos that I take one year apart. We need to figure out if the hair issue is contributing to ongoing loss or whether it has stabilized. Some hair loss issues like CTE do not change much over time. The patients loses massive amounts of hair first and then maintains that year after year after year. CTE can usually be diagnosed by history and if not a biopsy can usually capture it so photos are not really needed. However, there are a variety of hair loss situations whereby a photograph taken one year apart helps diagnose the condition that was once labelled a mystery. This includes some cases of scarring alopecia, some cases of androgeenetic alopecia and some psychiatric issues associated with a variety of hair issues.

Tough cases can’t be truly labelled mysteries unless sufficient time has been given to follow the pattern of loss.

Conclusion

There’s so many different ways that humans can lose hair. Some hair loss conditions can present a challenge to properly diagnose. However, many people who label their hair loss as a mystery have simply not had an appropriate evaluation.