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Alopecia Totalis: Causes. Symptoms, & Treatment
Dr. Michael May (FRCS)
Medically reviewed by
Dr. Michael May (FRCS)
Updated on March 26, 2024

Hair loss is something that many of us will have to deal with at some point in our lifetimes. Whether it’s the first signs of a receding hairline, or you start to lose hair due to stress, it’s something that most people will go through.

No one wants to lose their hair. It can be a significant hit to your confidence and impact many different areas of your life. For most people, they won’t even notice that they’ve lost their hair until 50% of it is lost [1]. Fortunately, in most cases, there are plenty of things you can do to prevent hair loss or reverse the effects that you’ve already experienced.

In this article, we’ll be talking about one type of hair loss that you may experience: alopecia totalis. This form of hair loss is a skin condition that can cause complete hair loss across the scalp. Keep on reading below to find out more.

Table of Contents

What is alopecia totalis?

Alopecia totalis is a type of alopecia areata that causes complete – or almost complete – hair loss on your scalp, with your hair starting to thin out first and then falling out almost all at once.

Unlike alopecia areata and ophiasis alopecia, alopecia totalis doesn’t just cause patches of hair loss across the scalp; it causes complete baldness. It’s also very different from alopecia universalis, which causes hair loss over your entire body. Whereas alopecia universalis causes hair loss everywhere including the individual’s body hair, alopecia totalis affects just your scalp.

This skin condition isn’t the most common form of hair loss, in fact only 1 person per 2000 individuals is affected [2]. Alopecia areata totalis is also common in children and young adults under the age of 40 but can occur at any age [3].

Recent articles suggest that alopecia totalis affects 0.03% of the population (around 1 in 3,300 individuals) [4]. However, the estimates of alopecia totalis incidence vary greatly.

Alopecia totalis
Patchy hair loss due to alopecia areata, alopecia totalis (center), complete loss of hair due to alopecia universalis

What causes alopecia totalis?

The exact cause of alopecia totalis is yet to be discovered however, many experts believe that is an autoimmune condition.

It is largely agreed that genetic and environmental factors can both contribute to alopecia totalis and that most people who experience this condition have some kind of genetic disposition. In one study they found that a family history of alopecia areata was found in 20% of patients with alopecia totalis [5].

Other factors like infection, stress, drugs, and illness are also thought to contribute to alopecia totalis [5].

For those people who have alopecia totalis, for whatever reason, their body mistakenly believes that hair follicles have become a threat and start to attack them. This then is what prevents the hair follicles from being able to grow healthy hair, leading to complete baldness.

What are the symptoms of alopecia totalis?

Most people who experience alopecia totalis will have a history of discrete areas of hair loss, which over time progresses to more severe balding. However, it’s important to note that only 5-10% of people who experience discrete hair loss will ever go on to have alopecia totalis or alopecia universalis [6].

Usually, patients will notice discrete patches of hair loss first which will then progress to alopecia totalis in one year on average, and within 4 years for 90% of patients [5]. Early signs can also include discomfort, itching, or tingling sensations across your scalp.

Hair loss can begin suddenly and advance very rapidly for patients with alopecia totalis and can sometimes manifest itself in other physical differences. For example, patients may also have pitted, brittle nails.

alopecia areata totalis example
Patient with alopecia totalis.
alopecia areata totalis with some hair regrowth
Patient with alopecia totalis following some hair regrowth.

How long does alopecia totalis last?

The usual period of alopecia totalis is around two years but, even after this period it’s very unlikely for hair growth to continue normally again – apart from in some cases in young children who are affected by this condition.

How is alopecia totalis diagnosed?

Normally, sudden hair loss will be a good indicator that someone is experiencing alopecia totalis, but it’s important to also visit your doctor for a full examination.

The condition will be diagnosed by a professional upon examination of your head and scalp. They will be looking into your hair loss pattern and will probably look into your family history to see if you have a genetic predisposition to the condition.

In some cases, you may have a biopsy of the scalp or be asked to provide a blood sample to help uncover the root cause of your hair loss.

Treatments for alopecia totalis

Although there is no cure for alopecia totalis, your doctor may advise you to take one of the following treatments to encourage hair growth again.

Treatments affect every person differently, so it’s not guaranteed that any of these treatments will be able to restore hair growth after experiencing complete alopecia totalis.

Topical immunotherapy

Topical immunotherapy is used widely in cases of alopecia totalis, usually using diphenylcyclopropenone (DPCP, diphencyprone) to create an allergic reaction on the scalp.

Although it’s unclear just how DPCP works, one hypothesis is that in response to treatment, the body will attempt to downregulate any inflammation which also downregulates the autoimmune response in hair follicles, encouraging hair growth.

Usually, these treatments will be administered on a weekly basis to achieve the best results. Some patients may experience side effects like itching or irritation [7].

Corticosteroids

Corticosteroids are prescribed by doctors to suppress your immune system, preventing it from attacking healthy hair follicles and helping hair grow back.

Minoxidil (Rogaine)

Minoxidil, which you can often find under the brand Rogaine, is a popular topical hair treatment that can be used to restore hair growth in cases of both male pattern baldness and female pattern baldness.

Ultraviolet light therapy

Some patients can receive phototherapy with psoralen plus ultraviolet A (PUVA) and photodynamic therapy (PDT). This process involves taking an oral or topical photosensitizing agent, followed by UVA light exposure to promote blood circulation and stimulate hair growth.

However, there aren’t enough clinical trials of this treatment to suggest that this significantly helps with regaining hair growth after alopecia totalis [8,9].

Tofacitinib

Tofacitinib is a treatment that was originally developed for patients with rheumatoid arthritis but has shown some promising results for treating people with alopecia areata.

In one trial [10], 70% of the 20 patients given tofacitinib experienced hair growth three months after initiating treatment. This suggests that could be potential benefits for people with alopecia totalis too.

Can you get alopecia totalis treatment on the NHS?

If you think you are experiencing alopecia totalis, the best thing to do first is to visit your GP where they can prescribe you over-the-counter treatments.

For these treatments, you’ll usually just have to pay the standard NHS prescription prices, unless you’re exempt from paying these.

If you do require more significant treatments, it’s unlikely that the NHS will fund these, unless you are in serious distress.

Can you get a hair transplant for alopecia totalis?

Hair transplants aren’t an effective treatment for alopecia totalis patients. Just like hair transplants for alopecia areata, hair transplants for alopecia totalis patients rely on the implantation of healthy hair follicles from elsewhere on the scalp.

People with alopecia totalis often don’t have enough healthy hair follicles to create good results from a hair transplant.

Other treatments have much better success rates for alopecia totalis patients. So if you’re worried about your hair loss, speak to a hair loss specialist at the Wimpole Clinic to discuss your treatment options.

Alopecia Totalis: Causes. Symptoms, & Treatment, Wimpole Clinic

Dr. Michael May (FRCS)
Medically reviewed by Dr. Michael May (FRCS)Updated on March 26, 2024
The Wimpole Clinic offers FUE Hair, Beard & Eyebrow Transplants & Trichology.
Talk to a specialist ☎ 020 7935 1861.

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