r/scarringalopecia

I feel hopeless. I think I got misdiagnosed AGAIN by one of the best medical trichologist of my city.

My whole story:

I bleached my hair twice, the last time last year in May, maybe it was the event which activated this whole thing idk then I shaved them all to let them grow again but I've noticed my hair getting similar to straw especially on my sides when they started regrowing and very thin on top

Then I started noticing thinning in December on my left side (and then also on the right side) after noticing for a while some kind of hair loss and itching.

I've always had dandruff for years so my scalp itching was nothing new but I did notice some kind of worsening.

In March I said "ok this is serious" as the thinning on the sides and crown seemed getting worse and people told me I had diffuse unpatterned alopecia (DUPA) or retrograde or lichen plano pilaris

I go to my first dermatologist and she tells me "You just have AGA, retrograde pattern, treat it with minoxidil 5%", then I go to the second dermatologist, another well respected dermatologist which is also specialized on hair loss, in April and he tells me "You're fine buddy return in two years"

I started obsessing over this a bit and I noticed lots people with DUPA or Retrograde find out they have lichen Plano Pilaris

I also get bloods work done and I have extremely low vitamin d (11.1 Ng/ml) and insulin resistance (2.98 HOMA index)

I get panicked and after not even a month I stop minoxidil and I book a visit to a quite known medical trichologist which is also a important member of the Italian trichology foundation, someone who felt like she'd know what to do with my hair.

On May 12 she visits me and tells me "You're fine, you got no LPP or DUPA which is only relevant when you need a hair transplant which is not ur case, your hair thinning is caused by stress, anxiety, the lack of vitamin d, lack of sleep and also the insulin resistance"

I ask her if it's possible to get a biopsy done since I suspect LPP considering my hair loss, the people with a similar experience who told me I probably have it, the low vitamin d, the sides thinning, the scalp being slightly red in some pics and the itching but she said "Yeah biopsy is the gold standard to diagnose LPP but if I gave you a biopsy my colleagues would probably think I've gone insane and would laugh at me"

I believed her at first due to her curriculum and the fact that she also made an article about LPP on her website so she knows about it quite well but then I notice that on the paper where she put the therapy she gave me to improve my hair she didn't put a diagnosis, she didn't tell me the cause and told me it's not Telogen Effluvium either

I feel so lost, it's killing me and it's the third which refused me to give me a biopsy even tho I have all symptoms

She says I don't have scarring but I think I don't have OBVIOUS scarring as it's diffuse and/or I don't have scarring YET

I want to save my hair this is cruel it was the only thing I liked about myself since I also have underbite gynecomastia and I hate my looks completely

They all used a dermatoscope but the latest one, the trichologist, used a digital dermatoscope which was connected to her laptop and showed everything

https://imgur.com/a/OSS6kJj other pics + the paper of the therapy she gave me

Hey everyone, I seriously need some advice from people who have gone through something similar because this issue has been affecting me mentally a lot and I stay stressed because of it almost all the time.

I’ve been dealing with this hair loss problem for around 2–3 years now. The main issue is on my crown area. Whenever I completely shave my head, I notice tiny small hairs growing back there, but they never properly grow longer or thicker. After some time, they become weak and fall/break again.

I’ve visited dermatologists multiple times. First, I was given treatment for Alopecia Areata, but later another doctor said it could be Lichen Planopilaris (LPP) / scarring alopecia and changed the medicines. So honestly, even now I don’t feel like the diagnosis is fully confirmed.

I also got a scalp biopsy done, but the doctor said the biopsy report looked “normal,” which made things even more confusing for me.

Because of all this, I stay under a lot of tension and overthink about it daily. I just want to understand what this condition actually is and whether anyone else has experienced hairs regrowing small but never properly growing and eventually falling again.

If anyone has dealt with something similar, please tell me what diagnosis you got, what treatment helped you, and what I should discuss with my doctor. Any serious advice would really mean a lot to me. 🙏

I went to the first trichologist after 2 dermatologists and she said this is just because of my low vitamin d, insulin resistance and anxiety

She used a digital dermoscope, I did ask to have a biopsy since I do have itching but she said "yeah it's the golden standard to diagnose it but my colleagues would laugh at me if I told you to get one"

She gave me a therapy and told me to return in December, she said she's sure I'm going to regrow my hair in the thinned zones

I asked if it could be DUPA or retrograde alopecia like the first dermatologist said but she said "No and she should've never given you minoxidil as you don't need it" and also that DUPA is actually just a symptom and it's just relevant when a hair transplant is necessary which is not my case according to her

I'm so tired, somehow I know I have non-scarring LPP but she said I don't

She said I don't have AGA either wtf

Ho AGA dal 2019 e sono in cura da 2 anni con finasteride, l’anno scorso ho dovuto fare una cura per 3 mesi con accutane 5 MG al giorno, verso la fine di questi 3 mesi si è scatenato un TE acuto che dura da 1 anno ho perso la metà della mia densità e ho paura che l’accutane mi abbia scatenato qualcosa di cicatriziale tipo LPP!
Per favore se qualcuno può darmi qualche consiglio ne sarei grato

Na foto com mais zoom dá para ver o buraco de foliculos (pelo menos parece).
É um foliculo já cicatrizado ?

This has been going on since last year.. I got in with a dermatologist immediately. I’ve done all of the vitamins, I’ve done spironolactone, finasteride, oral and topical minoxidil, I’ve gotten back on birth control. I’ve done steroid Injections, I was my hair in ketonozole and tea tree shampoo, I have a topical steroid oil that I use & my hair still looks like this and worsening. I have an apppontment with two different dermatologist on the 22nd and June 8. I just need to hear something from someone that’s shared a similar experience.. no shedding , hair loss or bald spots past the edges. The rest of my hair is completely healthy.. I’m truly scared that this is going to go all the way back. No biopsy has been done yet. So you guys know anything about this type of hair loss or what it could possibly be? I’ve had over 15 appointments with my regular dermatologist…

25F, scared out of my mind. going through a 6-7th month shed. current regime:
-1.25 mg OM
-5% topical minox
-25 mg spiro
-ketoconazole and caffeine shampoos alternatively
- got 3 PRPs done (in oct, nov and dec)

just noticed these scales(?) in my scalp and they have been there for quite a while but not as prominent as today.

what could it be? is this something to worry about? pictures taken today after freshly washed and air-dried scalp.

I was diagnosed with alopecia areata 8 months back. It started off as a small circular patch , progressing rapidly . I took steroid shots and currently on minoxidil . Today i noticed what felt like a new patch which was preceded by redness and itching . I’m scared rn

I don't know what to do right now... I have a chronic severe hair loss since 1 year now, it looks inflammatory i have servere digestive issues since 5 years now but this hair inflammation really started in April 2025 after antibiotics use.

I have SIBO, histamine intolerance and surely undiagnosed MCAS...

My symptoms are :

-Scalp redness that get triggered by food supplement and drugs

-Pins and needles sensation and itchy or burning sensation when triggered

-My hair changed texture (I had straight hair and now they are all frizzy like pili torti)

-I often shed a lot of very small hair (anagen hair loss)

-My hair basically just detached when I comb it or when I pass my hand through the scalp

-Lots of hair never regrew

-Some hair are being actively miniaturized

-I have more likely folliculitis because I have pimple (I use antiseptic shampoo everyday and it seems to help a bit)

-When I triggered my MCAS I have a massive shed in the next few hours

-I have hair casts on my hair, sometimes very close to the bulb

-Lots hair fall with a white dot bulb and overtime bulbs get smaller with each shedding

-I loose on every area of the head even on my lower back head/neck area

I have seen a dermatologist but he told me that it was nothing more than Effluvium telogene with a small seborrheic dermatitis... I am pretty sure it is not.

I have multiple nutrients deficiency, I am fixing B9 and B12 right now and I will soon start vitamin D and Iron.

I have seen plenty of docs and they all seem to not care and don't want to help.. my blood test came back with no inflammation.

I also have my gums that are inflamed when my scalp is inflamed so I am pretty sure it is something deep like an auto-immune condition..

I tried to study a bit my possibility and think this may be a mix of LPP, TE and folliculitis. I have folliculitis for sur because of the pimples but I am sure this is not what cause my shedding.

Also I am in the process of finding a doc for getting a proper diagnosed for MCAS and it is often acknowledge with MCAS that Alopecia Areata is the most common hair loss type.

But I don't think it is AA only because of the hair casts and pili torti...

To make it better I run out of money because I am chronicly ill and I am mostly bedridden...

I experienced a period of intense stress and insomnia about 10 months ago, and then 1–2 months later I started losing a huge amount of hair from all over my scalp. The shedding never stopped. After that, I started taking dutasteride 0.5 mg three times a week, but my hair loss kept getting worse continuously. I also developed severe itching on my scalp, and it became extremely oily. I used it like that for 3 months and started experiencing side effects.

Then another doctor recommended that I switch to finasteride, so I did. I have been taking finasteride 1 mg for the past 3 months, but there has still been no improvement in my shedding. In fact, my hair seems to be thinning and falling out even faster. Over the last year, I have lost about half of my hair density, and I am also losing a lot of hair from the sides and back of my scalp.

The doctor diagnosed me with AGA and did not pay much attention to my concerns, but I personally suspect either LPP or alopecia areata incognita. I would like to know your opinion as well.

Hey!

I have been diagnosed with AGA and possible LPP 2 years ago. And started taking oral minoxidil/ spiro and doxycycline since last year. I noticed that my hairline has changed and my dermatologist ( specialist in scaring alopecia) said that’s only thinning not scarring but im scared it could be scarring.

Has anyone experienced this before? Could it be scarring?