Comments on: Julie’s Story

By: Amy B

Amy B — Wed, 14 Feb 2024 23:16:32 +0000

In reply to admin.

First of all, thank you so much for starting this site!
I have so many questions about hair loss and Im not sure where to start. I am 37 and started shedding excessively last April (10 months ago). To me, excessive is 100-150 strands per day where my normal used to be maybe 20. I also got my first alopecia areata in October and will have a second treated tomorrow. Ive seen dermatologists, gynecologists’, internal medicine doctors and an endocrinologist. I feel like my body is betraying me! I have no idea what is happening or why and the doctors have not been very helpful. I went from perfectly healthy to taking 4 medications a day (multiple times a day) within a couple of months. Nothing has slowed or stopped the hair fall. I know I have PCOS. I have also recently learned that I have thyroid disease (not sure if its hypo or hyper). Doctor says it is “subclinical” and wont treat it until its worse. The emotional tole of being told by a medical professional “you’re sick, but not sick enough”, when Im sitting there scared and vulnerable will stick with me forever.
I do not know if what Im expereincing is androgenic alopecia. The derm said it is Telogen Effluvium based on the excessive shedding but it hasnt stopped in the 3 months it said it would. Ive lost 55% of my hair in 10 months. The loss is diffuse although I did have some bald spots with the areata and at my crown when it first started. Everything I am reading says that FPHL is slow progressing. My hair loss does not seem slow at all! All this brings me to my questions…
Where do I start to get a definitive diagnosis? If I ask for a biopsy, how do I know they are doing it correctly? If this is the start of AGA, will this shedding continue forever? Since I have already started minoxodil and spiro, will my hair ever recover to it’s pre shedding state or will it simply improve for what it is now? What else should I be asking for and doing?

By: Victoria

Victoria — Sat, 12 Mar 2016 04:01:54 +0000

Thank you for sharing your stories. Three years ago, I started suffering from extreme hair loss and exhaustion. After six months and countless doctors, I was finally diagnosed with Hashimoto and thyroid cancer. I was told I would stop losing my hair after I get treated. Well my hair loss has continued and nothing seems to slow the shedding. Not a day goes by that I don’t feel my hair fall on my arms, back, and legs. My doctors don’t care or even listen. They say my thyroid levels are now balanced with the daily medication, so the hair loss is not related. I have tried so many supplements, medicines, and hair treatments to no avail. No matter how delicately I treat my hair or what I do my hair continues to rain down. I feel so ugly! I don’t know what to do anymore, I can’t completely cover my scalp even when I put my hair in my daily ponytail. I haven’t cut my hair in over two years because I’m so embarrassed and worried about how much hair would fall going to a hair stylist. I’m so tired of feeling and seeing my hair fall all over. I can even feel my scalp tingle on days that i have a severe shed. How do you cope with this without completely destroying your self esteem? I have shed so many tears I just can’t get over this.

By: Mishell

Mishell — Mon, 28 Dec 2015 02:15:49 +0000

I too say “Why me? Why this?” at least a hundred times a day.

By: phyllis

phyllis — Sat, 17 Oct 2015 22:05:28 +0000

thank you all for every thing you say about your loss… i to have FBP about 17 months now its very hard every day and i”m 63 we all feel the same at any age. wish someone could come up with something to help with this… but like many of the doctors i’ve went to “they say it’s only hair” I also have vitiligo the same time it’s a party right. Oh well I’m much older than alot of you but i still feel your sadness every day . Wish we could all get together, at my place and come up with some plans for help with this, i live in Calif. would love for u to all come. and thank you for much for this website love ya! phyllis P.S. lets start something here in Calif.

By: hayley

hayley — Sat, 03 Oct 2015 16:35:03 +0000

Hi,
I just started loosing my hair. At first I thought it was normal, it gradually changed my point of view. It started out very little and then it started to fall out a little more everyday. I went to the doctors with a friend and they put me on medicine. It’s very scary to me because this has never happened to me before. I mean I am depressed all the time but I didn’t think it would lead to losing my freaking hair! If you have any pointers I can follow that would be great. It would benefit me very much.

By: deepika

deepika — Wed, 15 Apr 2015 06:45:23 +0000

Hey julie
Thanks for sharing your feelings. Its really important for us all to talk about our feelings here coz clearly noone else understands. Im 23, a doctor and have lost almost 75% of my hair and everything that you all wrote about people looking at ur scalp and nt ur face while talking to u or goin to malls or places with bright lighys just to have ur head shine .. N ya i also got diagnosed wid PCOS but my bloodwork is nornal. Every test i do is normal yet i have no solution! N v true no ggguy ever looks at u as a potential date ofc coz of d appearance. I have kind of lost my

By: Paloma

Paloma — Thu, 02 Jan 2014 18:34:15 +0000

I read Julie’s story on Women’s hairloss project and Reprieve website. I recently went to World Institute of Hair in Chicago and had a consultation. I have developed hair thinning for a few years now. Just recently diagnosed with PCOS and Hypothyroid, which explains the hair problems I have been having. My hair in a ponytail looks like a little rats tail it is so thin. Well Mette and staff at World Institute recommended I use the Reprieve system. I tried doing research on Follea also. Does anyone know about both systems? I am just wondering if my hair condition might get better would either system cause damage to my existing hair or scalp making my problem irreversible. I am just worried about the attaching processes. Also if I do go with Reprieve, do they offer it in longer forms or must I do extenisons? I have been trying to grow mine long for years, but with the hair falling like it is, I might need some extra help. I have naturally curly hair , Is the perming process on either system going to match my hair so that it looks natural? I finally started to like my own naturally curly hair and it has been very traumatic for me to be losing mine.
Thank you for any help or advice you can give, Julie.
Helen

By: Jade

Jade — Thu, 12 Jan 2012 05:38:49 +0000

After reading this site, entries, comments, and all it has to offer, I have never felt more part of something. I do not have one person in my life that can relate to what I’m going through and it makes me feel like an outcast. I have not spoken to any of my closest friends about my hair loss, they can see it of course and they can see how insecure I am, so they don’t ask. I was diagnosed with PCOS 5 years ago and my hair thinning has gotten so much worse since then. Its hard for me to even talk about hair in a social situation, I just stay quiet. I don’t feel like a woman anymore. After finding this site, and reading through most of it, it has given me the courage to make an appointment with a specialist so I can get some answers. Ive never read up on PCOS and the symptoms because Ive been in denial, since I’m only 22 I’m invincible of course lol. I want to thank everyone that has contributed to this network. I admire the strength you all have and hope I can have half as much of it soon! <3

By: Ali

Ali — Tue, 13 Dec 2011 17:48:20 +0000

Thank you for sharing Julie.
I work in retail as well and I feel your pain.
The one positive thing about working in a clothing store is you see a lot of women. Everyday at work I secretly examine female heads/hair. (silly I know) Obviously not to judge but to feel comfort that it’s not just me going through this. You would be surprised how many females have thinning hair or bald spots. I even see a few ladies wearing wigs. They range in age,race, nationality, they are usually in the late 20’s -70’s. I never noticed things like that until my own hair loss struggle .
Hair loss is a very scary, devastating, embarrassing thing, especially when your young. (i’m 24) My message to all the beautiful females is do what makes you feel beautiful. If wearing a wig or topper gives you confidence than wear it. If Shaving your head and going natural is what works for you than do it. :0

By: Jess

Jess — Sat, 19 Nov 2011 08:02:25 +0000

I am so happy that i found this website. I am 25 years old and just started my hair loss. My sister and I were sitting on the couch and I turned around and she screamed, OMG your missing a patch of hair. I had no idea..it was in the back where there was no way I could see it. I have no idea how long this has been happening, luckly so far the front part of my hair can cover it. I nver saw clumps, it was as if the hair had just stopped growing in that patch. I went to the doctors to do a blood test and everything came back negative, so either its stress or just a natural thing that is happening. I have yet to try wigs or any kind of treatment, and im glad I now know from reading posts the warnings of birth control pills, and the fact that you can loose hair from going on it, and off. It is very shocking and new to me.