teenager with sudden onset of significant hair loss

Posted by concerned mom @wschultz, Mar 16 10:15am

My daughter is 19 and a freshman in college. She was a high school athlete and healthy. She multi-tasked 3 sports, Club Volley, MAYB, college credit hours and work. College is less stressful for her as she is taking 16 credit hours and not working. We feel that going to class and doing her best in classes is her job during her college years so we are not asking her to work a job. I don't feel STRESS is the cause of this sudden onset of hair loss.

About six weeks ago she noticed a small bald spot starting on her front hairline. We went to see a dermatologist and he took a glance at her and diagnosed her with Alopecia Areata. He did not want to do any lab work but started treatment of corticosteriod injections and 10 days of prednisone. My friend who is an OBGYN agreed to check her thyroid and check for Lupus. The Lupus came back negative and her TSH was 6.1 and T4 was within normal limits. The tests did show elevated ferritin levels. At that point we made an appt to see an endocrinologist. He did not want to treat her thyroid unless the TSH was elevated to 10 and only if her T4 went out of range. He did run tests for Hashimoto's, testrone levels and antibodies. Those were all negative.

At this point, weeks have passed by and the significant hair loss is now multiple bald spots growing into each other making large patchy spots. Her hair is constantly falling out all over and we are now looking at hair pieces and wigs. I wanted a second opinion and was able to see another endocrinologist and he started her on Synthroid.

Another week has passed. We are into week 7 and she is still losing hair by the handfuls. I am so frustrated that I cannot find a doctor who wants to dive deeper into the root cause of the hair loss. The doctors are wanting to treat the symptoms but I don't feel they want to figure out what might be causing the hair follicles to react the way they are. I understand she has an autoimmune disorder but what is causing this reaction? Is there anyone who can help? We are thinking we may need to take her to Mayo Clinic.

@wschultz Welcome to Mayo Connect. We are patients/family members/caregivers here, and share our strength and experiences with others. We are not medical doctors. I can only imagine how frustrating and heartbreaking this situation must be for you. And your daughter may be very self-conscious about this turn of events. Have you been to see a rheumatologist to pin down the autoimmune condition? This may give you a clearer idea of what to/how to treat the hair loss. You're absolutely right, that stress can cause the hair loss, and going off to college can certainly be a stressor!

Here is a link from Mayo Clinic website about hair loss
https://www.mayoclinic.org/diseases-conditions/hair-loss/symptoms-causes/syc-20372926
If you are near a large teaching hospital or a Mayo Clinic campus, you and your daughter may have a strong chance of figuring this all out. Please come back and let us know what you find out. Will you do that for us?
Ginger

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@gingerw

@wschultz Welcome to Mayo Connect. We are patients/family members/caregivers here, and share our strength and experiences with others. We are not medical doctors. I can only imagine how frustrating and heartbreaking this situation must be for you. And your daughter may be very self-conscious about this turn of events. Have you been to see a rheumatologist to pin down the autoimmune condition? This may give you a clearer idea of what to/how to treat the hair loss. You're absolutely right, that stress can cause the hair loss, and going off to college can certainly be a stressor!

Here is a link from Mayo Clinic website about hair loss
https://www.mayoclinic.org/diseases-conditions/hair-loss/symptoms-causes/syc-20372926
If you are near a large teaching hospital or a Mayo Clinic campus, you and your daughter may have a strong chance of figuring this all out. Please come back and let us know what you find out. Will you do that for us?
Ginger

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We have not been to a rheumatologist as we have had no guidance as where we should turn to next. We just keep getting the "it's alopecia" and here is the treatment plan. We will keep you informed as to what we find out. Thank you for your response and suggesting a rheumatologist.

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@wschultz Good morning. I agree with @gingerw about seeing a rheumatologist. My hair started falling out at least 10 months before I was diagnosed with an autoimmune disease. You said that your daughter has an autoimmune disease, may I ask what it is? Keep being an advocate for your daughter, she needs you!

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She has been diagnosed by a second endocrinologist with subclinical hypothyroidism and a dermatologist diagnosed her with alopecia areata. There has to be an underlying condition that is attacking her hair follicles and making all of her hair fall out.

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If you could consult with Dr. Tosti, she deals with hair and nails. She has written several books on hair and nails. She is at the University of Miami. I highly recommend her.

Antonella Tosti, MD
Dermatology
Book Appointment
Practice Locations
1295 Northwest 14th Street, Suite K/L/M, Miami, FL 33125 (Map)

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@fighter

If you could consult with Dr. Tosti, she deals with hair and nails. She has written several books on hair and nails. She is at the University of Miami. I highly recommend her.

Antonella Tosti, MD
Dermatology
Book Appointment
Practice Locations
1295 Northwest 14th Street, Suite K/L/M, Miami, FL 33125 (Map)

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I will try to email her and see if I can consult with her. Thank you so much!

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Make sure that they ran a thyroid peroxidase test. Many doctors do not run this test which tests for antibodies for a possible diagnosis of hashimoto's.

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@fighter

Make sure that they ran a thyroid peroxidase test. Many doctors do not run this test which tests for antibodies for a possible diagnosis of hashimoto's.

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they did test for Hashimoto's and it was negative.

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@wschultz. I found this website that may be of interest. It talks about sub clinical hypothyroidism. https://www.healthline.com/health/subclinical-hypothyroidism. Please be sure to let us know what you learn.

Liked by lioness

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I just saw these posts when looking for my walking site. I don't know if I can be helpful and I am not a teenager but in my late 70's. However, I have some auto immune problems which they haven't managed to completely diagnose. At one point they said I had Discoid Lupus and then sometime later my blood tests were negative. They still think that this is what I have.
Last year I had loss of hair and I went to my dermatologist and she gave me injections of a corticosteroid, Clobetasol Propianate. This is often used for hair loss.Unfortunately it back fired with me and my scalp became very inflamed and a lot more hair fell out. I had a large bald area and the rest of my hair thinned considerably. I then went to see my old dermatologist as I had more faith in her and she put me on Hydroxychloroquine or it's other name is Plaquenil. I also had various ointments to try but I am not sure that they helped. Soon after I started taking the Plaquenil my hair began to grow back. It has taken about 9 months in all. My scalp still felt sore and itchy and then my whole body started to itch. I am now on Lyrica or Pregabalin, which seems to be helping with the itching. I do believe that all these symptoms are due to an auto immune disease. I have also suffered for years from chronic fatigue and pain in my body like a mild fibromyalgia.
I am considering going to see a naturopath as they tend to be the ones who search for underlying causes. You could consider that if nobody else helps. I also had a lot of blood tests but they didn't find the answer and even though I am older I always had healthy thick hair. I am just relieved that my hair is coming back to normal.
I have also heard of similar cases to your daughter's that come and go. Mayo clinic or the other suggestions that people have mentioned would also be good I think. I really feel for your daughter, especially at her age, but don't give up. I'm sure it will eventually improve. Someone will help her. I was very depressed during the time it was happening to me.

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Thank you for your response. We just had a follow up with our dermatologist and he prescribed Hydroxychloroquine. We will see if this helps. I am hoping there are not any major side effects.

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@wschultz

Thank you for your response. We just had a follow up with our dermatologist and he prescribed Hydroxychloroquine. We will see if this helps. I am hoping there are not any major side effects.

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@wschultz I hope you will let us know how this works out for your daughter!
Ginger

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@wschultz

Thank you for your response. We just had a follow up with our dermatologist and he prescribed Hydroxychloroquine. We will see if this helps. I am hoping there are not any major side effects.

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Hi @wschulz. did you get my message a few days ago because that is what I am on. I hope it helps your daughter the way it has helped me. I have not found any side effects so hopefully it will be the same for your daughter.
A friend of my daughter also had this problem and she gets it intermittently. When it gets bad she has some hair weaving done to help while things improve. I have no idea what it costs. My hair started to settle down and grow back quite quickly and I could see new little hairs growing in a month or two. Good luck. Jennifer

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Thank you for reaching out! I hope this medication works for my daughter. It’s just hard to see her hair falling out every single day. I just pray she doesn’t go bald.

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@wschultz

Thank you for reaching out! I hope this medication works for my daughter. It’s just hard to see her hair falling out every single day. I just pray she doesn’t go bald.

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Our dermatologist has prescribed Hydroxychloroquine for alopecia areata but it does not seem to slow down the hair loss. Does anyone have other suggestions as to what might be causing her hair loss? We are treating her thyroid with Synthroid. Thank you!

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