Has she been tested for type 1 diabetes? My teen daughter was losing hair, and weight, it was diabetes, not always tested - it took 6 months before someone thought to test for that. If she’s irritated and having outbursts, that could be a sign of high blood sugar.

How high is the ferritin?

In the meanwhile, get her a nice synthetic wig so she is less likely to pull while her scalp heals.

Sounds like she probably IS pulling. It's Trichotillomania. It'a treatable before she permanently scars her scalp.

Anonymous wrote:Sorry to hear that. Have you done a blood test and checked her inflammation markers? Start from there. Once you can establish that there is inflammation, then you can figure out what is wrong with her.

It is not normal to lose all her hair. But, it is reversible once the underlying cause is treated. I am so sorry that your beautiful daughter is going through this. Please do not rely on the doctors. They are quite clueless and limited in their education.

As opposed to whom... the Internet quacks led by intuition? SMH

Anonymous wrote:

Anonymous wrote:Her doctor should be pushing for more bloodwork. Surely they didn't just shrug their shoulders, right???

Im the OP. Thanks for all the replies. We have gone to 3 doctors and they all shrugged their shoulders.

My teen is irritated and has outbursts everyday. Her grades have gone down and she won’t leave the house unless it’s school.

She’s not pulling it out. Her iron came back low but they said it is still normal.

Is she irritated with outbursts and school performance drop as a result of the hair loss? Or is the behavior preceding the hair loss? Have you mentioned this to the doctors?

It sounds hormonal to me, which will be difficult to diagnose but an endo might be your next best bet.

Sorry to hear that. Have you done a blood test and checked her inflammation markers? Start from there. Once you can establish that there is inflammation, then you can figure out what is wrong with her.

It is not normal to lose all her hair. But, it is reversible once the underlying cause is treated. I am so sorry that your beautiful daughter is going through this. Please do not rely on the doctors. They are quite clueless and limited in their education.

Anonymous wrote:I am the OP and have scheduled an appointment with a new dermatologist.

What questions should I ask? Im scared this will be yet another one of those situations where they just shrug their shoulders.

This dr has his own hair clinic so I wonder if he will even want to look at blood work? As you can imagine this has been mental hell.

Thank you to everyone 💗

The derm is a good next step, as they can examine her scalp with a trichoscope and take a biopsy if needed. In the meantime, I would recommend getting an inexpensive trichoscope online (amazon) and researching images of alopecia areata trichoscopy findings vs other causes of shedding like telogen effluvium and androgenic alopecia to have some frame of reference when you go to the doc. It might also give you some peace of mind that it's not alopecia and may be temporary shedding that will grow back.

I have alopecia areata and had diffuse thinning, stages of patchiness, some regrowth, then lost almost all of my hair. Went through a lot of docs and derms in the early stages before I was officially diagnosed and effectively treated, and now I'm on a JAK inhibitor, an immunosuppresant that is recently FDA approved. It's working really well for me with minimal side effects, so even this worst case scenario of being nearly bald has been temporary. I've been through a lot, though, and I especially feel for your teen. I would not have handled it well at that age.

I have another autoimmune disease (celiac) which may have made me more predisposed, but I'll never know for sure what triggered it. I had tons of diagnostic bloodwork and other doctors visits to rule out other health issues before seeing a derm, but they also showed nothing but some low iron, low vit d, and some mild inflammatory markers. Happy to answer any other questions.

Anonymous wrote:Thanks 🙏🏼 everyone sincerely.

I have a question about Iron.
My daughter has a high ferritin (iron stores)
but low iron. Some people say that a high ferritin is all that matters. Which one is it?
Her S-Iron was very low
-OP

Can you elaborate? What were both numbers?

Also when ferritin is very high it’s a marker of inflammation.

Did she have Covid or another virus? It could be a post-viral syndrome.

OP, in addition to the dermatologist, press for additional bloodwork, deeper thyroid work, make sure hormone levels get tested. In other words, press on several fronts — it takes a while to get appointments, so get on doctors’ calendars now.

A big hug to you and especially to your daughter.

My dermatologist just focused on growing my hair back. She tried several different things and the steroid shots worked.

All my doctors were pretty dismissive of the idea that we would identify a "root cause." I spent so much energy trying to figure out what was causing it but in the end there was no clear answer and my hair grew back. From what I have read online that's a typical story. Sometimes people lose hair after a virus, a traumatic event, or major weight loss, but often it's for no discernable reason.

Check out PCOS

This happened to my sister but she was 14. It turned out to be some genetic thing from our Scandinavian side (at least according to my mom), just happened that once.

High ferritin and low iron sounds like she’s absorbing iron but can’t put it to use. How U.S. her B12 and folate? Get B12 above 600 and folate above 15. They are “friends” with iron and you need them all to do the work.

Alternatively: ferritin can be falsely high due to inflammation/illness. Might have low iron stores AND another problem that is masking it.

Has she had any physical traumas OP? Broken bones, surgeries, especially bad viruses, or other diagnoses?

Can you post what bloodwork she has had? My understanding is that there are different panels — you can get a “full” panel in one area without ever looking at different areas.

Ask if you can get an endocrinologist referral too.

She sounds like a kid under great stress, and I’m sorry.