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Please help me understand :(
Hi Ladies
So I first noticed my hair loss last June and since then i has lost 80% if my hair, lashes and eyebrows also badly effected. I searched for so long to find answers - not my thyroid, not anaemia, not coeliac...I had a derm tell me twice that it was telogen effluvium. She did a scalp biospy and said "9% of your hair is in telogen, no scarring, no miniaturisation". I later found out that she took these biopsies from the frontal and occipital areas. Not ideal. I went to a trichologist who looked at my hair and scalp microscopically and said "80% of you hair is either miniturized or not growing properly". I was put into spironolactone. I have also recently found out that my DHEAS is elevated, whilst my estrogen is at a menopausal level. Makes sense since i had amenorrhea for years and only this Jan started getting regular periods again (lord knows why). However my estrodiol is still terribly low. My gyno says i may have tube issues or going into premature ovarian failure. We are in the midst of doing further tests to find out.
Getting to the point, all of this confusion has been surrounding the pattern of my hairloss. For the longest time no doctor has been able to tell me why my temples, sides, hairline and nape have been so badly effected. No one could tell me why my lashes and brows are thinning terribly. Everyone says "your hairline looks normal. Women usually have wispy vellus hairs around the hairline anyway". But looking at photos and seeing the change happen to quickly now i KNOW it's happening and i now have bald spots on my top hairline, the hair around my temples is so thin you can very very easily see my scalp and my nape is kreeping up so quickly that i feel like soon i will look like a bloody monk. My eyebrows seem to be thinning from either end also. My scalp itches and i notice it gets red too. At times my eyelids become tender and i have noticed my bottom eyelids becoming kind of droopy. I look awful.
I am 22 years old.
After hours and hours of research and agony, wondering why my AGA doesn't look like AGA, i came across FFA. It all fits, and i cannot breathe. It explains the very gradual hairline recession, the eyebrows and eyelash loss, why there is literally no regrowth on the recession where the hair has been lost. I believe that i have both AGA and FFA. This is common apparently in women who have FFA. I told my dad who is a doctor and he said with much concern "certainly, this is something we must at least rule out". I can tell me seemed convinced too. I now have an appointment to see another derm in 2 weeks, and in the meantime i am slowly dying inside. I am young, and i may just... lose all the hair on my head. It's bad enough that i have been told that i may never have children. I do not notice and white shiny where the recession is but apparently this isn't always noticable. I mostly notice itching especially at my nape and tender eyelids. There appear to be no pimply/lesion things. I really would like opinons. I am almost totally certain that this is what i have as it fits too well. However any input would be appreciated. I shall attach some photos. Please not that i am wearing makeuop so you can't tell what my lashes and brows look like.
Thank you
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Permalink Reply by April on
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Hi!
First let me say that I am SO sorry you are dealing with this. It certainly sounds like it could be FFA but it is hard to tell ftom your photos. Did your biopsy show 'scarring' hair loss? That's what would differentiate your condition from other hair loss diseases. Not everyone has the pimples etc. Some have itching some don't. The involvement with your eyes definitely points to FFA. Many ladies on this forum have similar eye issues/inflammation. You are definitely the youngest person I have heard of having it. Please find yourself a dermatologist that is familiar with this condition. The Cicatricial Alopecia Foundation (CARF) will recommend a dr. In your area if you email them. I think if you get a proper diagnosis it will help. Perhaps try to find a support group in your area. Also, please know that you are not alone! Many of us are dealing with these issues, and yes it is a horrible thing to go through, but there are treatments available and new information coming out all the time. Please let us know what else you find out. Hugs: ) -
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I have only had the biops from my frontal and occipital scalp so those areas would it have identified any scarring. I have itching and at times my scalp goes red especially after a shower. I first thought that because I am going through a sort of premature menopause I was just losing hair like an older woman because of the super low estrogen. I thought that's why the eyelashes and brows were thinning. But they just get worse slowly. I have gaps in my lashes and they are super feathery. Like they themselves are choked DHT hairs. My hairline is so wispy and jagged. I have basically no hair left at my temples and the hair on my sides is so thin that it doesn't even hag down like normal hair anymore. I have also noticed like a sort of dandruff just above my widows peak. I am so sure I have this :(
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Please also reach out for emotional help. It sounds like you are depressed. It is very understandable. There are times in life when a mental health therapist is what we need to help us keep going - one day at a time. I wish this whole support group could physically come by and give you some love and support but on-line we are all here for you.
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Permalink Reply by DragonandFox on
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Oh SLE...you are making my eyes sad too now. :( I do not say this to minimize your concerns but you need to know your photo's show a beautiful young woman and it's difficult to detect the issue.
With that said, I have no doubt you're completely stressed out which is compounding everything. When I read you're 22 years old I felt alarm. I'm 52 and I know when I was 22 my appearance was high up there as a priority, that's normal.
When I went to my Dermatologist who I trust immensely because not does he concern himself with Skin cancer, but he's a plastic surgeon as well and thus, respects my personal need for healthy aesthetics while never ever pushing Plastics on me, ever. The 1st thing he did was send me to get a special set of allergy patch testing that tests for 100+ possibilities, instead of the routine 40 or 60 done in most Dermatologists offices. I live close to Yale so I went there (My Dermatologist is in New York City). I was tested by a Derm Professor there and before the test he looked at my scalp and called it, FFA. I went to my Derm after that and he did the biopsy confirming.
You absolutely need to see a top rate Dermatologist who is familiar with this auto immune disease. Frontal Fibrosing Alopcia is rare.
I agree with April, call CARF ASAP.
I also experienced some Dandruf but once I stopped the Steroid creams and changed my shampoo, I no longer have that. I think Acupuncture is helping a lot!! It's a slow process though.
(I talk about the acupuncture on another thread)
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