4 Doctors, 3 Diagnoses: Why Can't Anyone Get it Right?

Multiple Diagnoses in Hair: When everyone is somewhat right but nobody is completely right.

Diagnosing hair loss is type of meticulous detective work. The story some people have en route to getting their diagnosis sometimes reads like a storybook - it has it’s twists and turns.

Let me introduce you to Mrs W. Mrs W comes to the clinic quite frustrated. Let’s assume for this article that YOU are her doctor.

She has been to four doctors in the past and she has photocopies of each of her consults with these doctors for you. The first doctor said she had androenetic alopecia and seborrheic dermatitis. The second and third doctors said she had telogen effluvium. The fourth doctor said she had lichen planopilaris,. She brings in two biopsy reports - the first biopsy (from the first doctor) showed a diagnosis of androgenetic alopecia and then second biopsy (from the fourth doctor) showed lichen planopilaris.

Who is right? What is the diagnosis for Mrs W? How can we help her?

Well, every good detective pulls out their writing pad and starts taking some good notes. (The pocket book, it seems, is very much a part of being a good detective). So for Mrs Jones you learn that she is 43 years old and started to have worries about her hair last year when she noticed her scalp could be seen easily when she was on an elevator one afternoon when going to visit a friend.

Fast forward to New Year’s Eve last year (Dec 31), when Mrs W tells you that she spent 2 hours in the mirror trying to do her hair before a New Year’s Eve party because it just wasn’t the way she wanted it. She says the front and middle of the scalp were thin at that time. There were a few more hairs coming out in the shower at that time - but only a few more. There was a bit of scalp itching (but only minor) but no scalp burning and no pain. Mrs W’s husband took a good look at that time and said everything looked fine to him. Mrs W tells you her health was good at that time. She had some stress around the time but she denies it was really too much. You learn that the New Year’s Eve party was actually being organized and hosted by her - for 250 guests. Even though organizing a party of this magnitude might seem stressful, you learn that this is something Mrs W is used to.

Before I lose track and explain anything further about this New Year’s Eve party, we must get back to facts. Besides noticing a bit more hair thinning in the front, there was nothing else in her story that seems relevant. No new medications were recently started. No weight loss had occurred. No new hair products were used. No change in eyebrows or eyelashes were noted - just the scalp hair. It was thinning.

Mrs. W tells you she was quite distraught after her New Year’s Eve party that she booked an urgent appointment with a well respected and very knowledgeable dermatologist who specialized in hair loss on January 2nd. The dermatologist examined her scalp carefully and noted that very early signs of female pattern hair loss were present (androgenetic alopecia) along with a bit of redness that was thought to be in keeping with seborrheic dermatitis. Mrs W tells you that she asked for a biopsy to be done on that day even though the dermatologist told her that it was not necessary. That biopsy returned showing features of subtle androgenetic alopecia with a terminal to vellus ratio of 3.8 to 1. Sebaceous glands were preserved and appeared prominent.

Mrs W tells you that she left the appointment feeling disappointed with the news of the diagnosis but felt confident with the decision to start a treatment plan. Mrs W tells you that she became busy in January and February with a variety of different things in her work and at home and in her community and delayed starting treatment for her hair loss.

Mrs W then explains to you that in late April she started to notice significantly increased amounts of hair shedding. She woke up to find 2-4 hairs on her pillow and finding hairs on her pillow was not something she ever saw before. She also noticed more hairs in the shower after shampooing and while blow drying hair hair. At first she did notice the increased hair shedding because she was more concerned about other aspects of her health. She had noticed increasing amounts of fatigue, weight gain, and memory changes that was having an effects on many areas of her life. She went to one doctor (not her original dermatologist who was away on vacation but a doctor who she was able to get into quickly) who said that her hair loss is due to her being over stressed and that the shedding is probably coming from the stress of all the activities she is going. When she asked the doctor about the diagnosis of androgenetic alopecia, he said that her hair was fine and that it will all grow back. Mrs W wants you to know that doctor 2 did not examine the hair or scalp.

Mrs W was not satisfied with that opinion and went to a third doctor. She again found that she was also given the diagnosis of telogen effluvium. The third doctor felt she did not have androgenetic alopecia but felt that telogen effluvium is what she has and that basic tests should be ordered. The third doctor agreed that Mrs W had seborrheic dermatitis because her scalp was a bit red.  Mrs W wants you to know that doctor 3 did not examine the hair up close with dermoscopy - only from afar. . Sure enough the tests came back showing extremely low levels of thyroid hormones. Mrs W shows you her labs and you note that TSH was measured at 25.9. Mrs W says that her doctor called her at that time to tell her that her telogen effluvium was due to hypothryoidism and that she should start thyroid medications.

Next Mrs W tells you that her density dropped quite a bit in May, June and July but there was some improvement in shedding when she started her thyroid hormones (Synthroid tablets). However, her shedding continued despite this and her itching and redness increased steadily from April through and August. In September she developed some burning in the scalp too and the scalp was tender.

Mrs W tells you that in November she sought the advised of a fourth doctor - an esteemed professor at the university. This fourth doctor thought that Mrs W’s diagnosis was something she had never heard of before - scarring alopecia. The doctor said he recognized it immediately when he examined her scalp. He performed a biopsy and it returned showing features of a scarring alopecia named lichen planopilaris. She gave her a steroid lotion to use and asked her to come back in 3 months. As Mrs W points out to you, his consult letter did not contain the words “androgenetic alopecia” so she’s not sure if this is really her diagnosis too or not.

4 Doctors, 3 Diagnoses: Why Can't Anyone Get it Right?

And so this brings you up to the present time. Mrs W is extremely frustrated and wants to know what her diagnosis is. She wants to know if she has androgenetic alopecia or telogen effluvium or scarring alopecia. She wants answers!

Mrs W and Her Current Visit With You

You proceed to examine Mrs W’s scalp. You noted that there is hair loss for the middle of the scalp and front of the scalp as well as some degree of diffuse hair loss all over. With a dermoscope you see clearly that there is a variation in the caliber of hairs with some hairs thick and some thin. You note that the scalp is quite red and there are areas of the scalp where hair is missing and these areas seem smooth and white rather than red. Again using your dermatoscope you notice that some hairs have a whitish scale around each hair which you recognize as the perifollicular scale of lichen planopilaris. When you lift the hairs straight up you note there have been waves of regrowth happening in the past.

Many People Have More than One Diagnosis

The key here is that Mrs W has experienced four diagnoses in the past year. Mrs W has been slowly developing androgeneetic alopecia for quite some time but it was only last December while preparing for a New Year’s Eve party that she herself really noticed it. This was likely going on for many months to even a year or more before she noticed.

We can’t say for sure in January that Mrs W did not have lichen planopilaris but it sure doesn’t seem like she did have this diagnosis back in January. Her biopsy was pretty typical for androgenetic alopecia and the fact that sebaceous glands were not reduced is suggestive that we were not dealing with a scarring alopecia

Doctors 2 and 3 correctly diagnosed telogen effluvium for Mrs W. This was indeed one fo the diagnosees going on at the time. The problems with these visits was there was that both doctors failed to recognize that androgenetic alopecia was present and doctor number 2 failed to recognize that every patient with shedding needs some pretty basic blood tests to rule out things like iron deficiency and thyroid problems.

Doctors 2 and 3 likely did not have the same diagnostic skill set as doctor 1 to make the diagnosis of androgenetic alopecia. AGA can be quite subtle in the early stages. Mrs. W had androgenetic alopecia in January and by the time March rolled around she had androgenetic alopecia, seborrheic dermatitis, and telogen effluvium.

The challenge with lichen planopilaris is that it can sometimes be very challenging to diagnose in the early stagers. Now, usually the scalp is itchy and red, and usually there is some degree of increased shedding noted by the patient - but not always. We can’t say for sure that Mrs W did not have lichen planopilaris back in January. All that we can say is that it was not captured in the biopsy. Many patients with LPP have seborrheic dermatitis so it’s not correct either to say that the seborrheic dermatitis back in January was misdiagnosed as lichen planopilaris. Not at all. It’s quite likely that any hair loss expert would have only diagnosed androgenetic alopecia and seborrheic dermatitis back in January.

I suspect that Mrs W probably had hints of LPP in January. However, LPP in the early stages is sometimes impossible to differentiate from seborrheic dermatitis. Over time, LPP can be easily differentiated from seborrheic dermatitis. At what point did LPP become “really evident?” It’s difficult to say. Doctors 2 and 3 probably did not have the skills to recognize LPP in these early stages. Ceritnaly doctor 2 could not have made the diagnosis because this doctor did not even examine the scalp. Doctor 3 only examined the scalp from afar and it’s just not possible to diagnose LPP from afar. Mrs W tells you that doctor 4 made the diagnosis of LPP right away when he looked at the scalp so this tells us that it was fairly advanced at that time - so there could have been some hints in May of the diagnosis of LPP. But again - maybe not.

Doctor 4 was quite focused on the LPP as clearly that was a major concern for Mrs. W. I can’t say for sure if doctor 4 realized there was some AGA present as well but certainly we will need to address the AGA too at some point if we are going to maximizing our ability to help Mrs W and save her hair.

The main lessons in this example are:

1. Multiple diagnoses are common. One should not look to make thee diagnosis but rather one should look to make all the diagnoses that are actually present

2. Early scarring alopecia can be subtle and can go on months or years before a diagnosis is made.

3. All patients with presumed telogen effluvium need to have blood tests. The exact tests that one should order depend on the history but include ferritin, thyroid stimulating hormones, CBC, at minimum. Other tests may be needed as well.

4. Every single time one makes a diagnosis of telogen effluvium, one should ask “is is possible I also have another diagnosis that mimics telogen effluvium like androgenetic alopecia or scarring alopecia or alopecia areata”

5. Patients need to be re-evaluated at some point. If a patent with presumed seborrheic dermatitis is not responding to dandruff shampoos or the scalp is changing in a manner that does not look like seborrheic dermatitis any more, then a scalp biopsy may be needed. If a telogen effluvium is not resolving one must ask why that is. Is there another diagnosis?