Introduction

Alopecia Totalis is a form of Alopecia Areata that causes a person to lose all the hair from their scalp.^1,2 It affects 0.08% of people³ and can be very upsetting, although it’s not dangerous to the health.²

This article will discuss Alopecia Totalis, its causes, its symptoms and possible treatments. 

What is alopecia totalis?

“Alopecia” means “hair loss”.² Alopecia Areata is a condition that causes people to have small, round, smooth areas of hair loss on their scalp.² If this hair loss occurs over the whole scalp rather than smaller areas, it is called Alopecia Totalis.² If the hair loss covers the whole body, it is called Alopecia Universalis.²

In Alopecia Totalis, the hair is still present in other places on the body (for example eyebrows and eyelashes).⁴

Symptoms of alopecia totalis

There are several symptoms caused by Alopecia Totalis.

Hair loss

Most people with Alopecia Areata first notice spots of baldness that are circular and about the size of a coin.⁴ In 5-10% of people with Alopecia Areata, these patches will get bigger and bigger until the whole scalp becomes bald.⁴ This hair loss takes about a year on average.⁴

People with Alopecia may feel a tingling sensation at the scalp, but there should be no pain or skin irritation.²

Fingernails

About 20% of people with Alopecia Totalis will notice a change to their nails. The nails can be affected in several ways:⁴

• Nail pitting (where the nails get little dents in them, like at the top of a thimble)²
• Nails that become brittle and break easily
• Rough, deeply ridged nails (trachyonychia)⁵
• The nail detaching from the nail bed (onycholysis)⁶ 

What causes alopecia totalis?

Alopecia Areata, and therefore Alopecia Totalis, is caused when your body’s immune system (its defence against infections like bacteria and viruses)⁷ attacks the cells that grow your hair.⁴

Some genes (the information that we inherit from parents that tell our bodies how to do certain things)⁸ can make it more likely that you will develop Alopecia Totalis.⁴ These genes are called HLA-DRB1*04, HLA-DRB1*16 and HLA-DRB1*03.⁴

Some illnesses, stress, infections, and drugs can cause the disease or make it come back once hair has grown back.⁴ These illnesses are discussed in the next section of the article. 

Who is at risk of getting alopecia totalis?

You are more likely to develop alopecia totalis if:⁴

• A member of your close family has alopecia totalis
• If you have an autoimmune disease (for example inflammatory bowel disease (a problem with the digestive system that can cause cramps, constipation, bloating and diarrhoea)⁹, thyroid problems (when your thyroid gland cannot produce enough thyroxine hormone)¹⁰, atopy (when your body’s immune system reacts against things it is not supposed to)¹¹, vitiligo (a condition that causes white patches on the skin)¹² or type I diabetes (when your body cannot control the levels of sugar in your blood)¹³
• Children and young adults are more likely to get Alopecia Totalis (though it can happen at any age)

People assigned male at birth are just as likely as people assigned female at birth to develop Alopecia Totalis.⁴

Diagnosis

If you notice hair loss, it is a good idea to make an appointment with your doctor.¹⁴ There are several tests that your doctor may do to find the cause of the baldness. 

Asking questions

Your doctor will begin by asking you questions about any hair loss that you have had in the past, including when it started and if it is getting worse.¹⁴

They will also ask about your health in general, for example, if you have any immune system problems (like the ones mentioned earlier in the article) and any new health issues you may be having.¹⁵ 

Checking your scalp

They will start by looking at your hair and scalp to see if what they can see fits with the usual appearance of Alopecia Totalis, for example, the smooth round areas of baldness mentioned in the Symptoms section of the article.¹⁴

Alopecia does not normally cause problems like irritation of the skin or pain, so your doctor will want to rule these out as problems.²

Blood tests

Your doctor may want to perform some blood tests to try to see if you have any problems that may cause the hair loss¹⁵ such as thyroid problems or other autoimmune issues as mentioned above.

This involves a small amount of blood being taken by a nurse and being sent to the laboratory for testing.¹⁶ It’s usually done at your GP surgery and you will normally receive the results within a few weeks.¹⁶

Hair samples

Sometimes your doctor will take some of your hair to be sent to a laboratory so that it can be checked for problems.¹⁵ 

Tissue samples

The doctor may want to take a small sample of skin from your scalp to be sent to the laboratory to be examined.¹⁵

This is normally done by numbing the area of the scalp where the sample will be taken from, and a special instrument is used to gather some of the skin.¹⁷ It will then be examined under a microscope to help find the cause of the problem.¹⁷ You do not normally need to stay in the hospital for this.¹⁷

Treatments

There is no cure for Alopecia.² Sometimes Alopecia does not need any treatment at all and the hair will grow back by itself.² However, the chances of the hair growing back goes down, the more hair is lost.²

Steroid treatments

Steroids are sometimes used to treat Alopecia Totalis, and this can be in the form of tablets, injections or creams.²

The steroid cream will normally be rubbed into the affected skin twice per day.²

If you take the steroid tablets, this may help the hair to grow back, although the baldness often returns when the tablets are no longer being taken.² These tablets can cause side effects like high blood pressure, weight, diabetes, osteoporosis (a problem where your bones become weaker)¹⁸, and cataracts (when the lens inside your eye becomes clouded).¹⁹

Steroid injections can be done at the point where the hair is lost, but this is most effective for small patches of baldness rather than Alopecia Totalis.² 

Irritating the scalp

Irritating the affected area can sometimes cause hair to grow, though the evidence of this is not completely certain.²

Dithranol cream is one way to irritate the skin and try to stimulate the hair to re-grow.² 

Another method of irritating the skin is called “Contact Sensitisation Treatment” and this involves making a person allergic to a chemical, and then putting that chemical on the bald patch of skin to irritate it and hopefully stimulate the hair to grow.² This can lead to problems like swollen glands, blisters and irritation and may even cause eczema.² It can also make the skin paler, so it is not recommended for people of colour.² 

Another way of causing skin irritation to try to make the hair regrow is ultraviolet light treatment.² The patient is given medicine that makes the skin sensitive to light, and then ultraviolet light is shone on the bald patch.² This is usually done a few times a week for several months, but unfortunately, the hair often stops growing once treatment is stopped and there is also a risk of skin cancer developing.²

Finasteride and minoxodil

These are medicines which can help to increase hair growth, though Finasteride should only be used by men.¹⁴ They can be successful in making hair re-grow, but they only work for as long as they are being taken and the hair may fall out again if treatment is stopped.¹⁴

Tattoos

Some people have tattoos to mimic short hair to hide their bald patches as a permanent solution if the hair does not come back by itself.¹⁴

Other treatments

Some people do not want to have medicines or other procedures for their hair loss; others try these procedures and they do not work.¹⁴ These people may turn to other options.

Wigs

People with Alopecia Totalis sometimes find that wigs help them to feel more confident.^2,14

In some cases, the NHS will help to pay for a wig if you have alopecia. Speak to your healthcare team to find out.²

Other options

There are support groups for people with alopecia, as people with the condition often find it helpful to speak to someone who knows what they are going through.²

It is important to protect your scalp from the sun if you no longer have hair.² Using suncream and a hat can be important in preventing damage to your scalp.²

Summary

Alopecia Totalis cannot be cured, but it is not a dangerous health condition and there are many treatments that can be tried to help the problem. There are also many support groups and options to help people cope with Alopecia Totalis.

If you or someone you know may have Alopecia Totalis, please make an appointment with your GP.