Replies to This Discussion

Permalink Reply by 2Dachshunds on November 21, 2018 at 12:27pm

Hi Hailey: If I pull my hair back like you have in the first picture, I do not see any short hairs poking out so I am wondering if those short hairs of yours are new growth.

How is the side and temple area of your hairline?  I first started losing hair above my ears with ffa.

Check with your doctor & I understand with having a baby there are hair fluctuations.  

Also, with FFA I can see where my hairline used to be, it is very faint but I can tell.  And I have red blotches and itching.  I'm not sure I see that in your photos.

Ask your doctor and good luck!

Permalink Reply by Plf on November 21, 2018 at 4:15pm

Hi Hailey, congratulations on becoming a mum, the first thing I would do is see my GP and have some blood tests, Hb, thyroid, vitamin d levels etc, it's not uncommon to have some hairloss post baby.  Where I have lost 2 cm of hair from the front of my hairline, it is pale and shiny. 

Permalink Reply by Miss Mymble on November 22, 2018 at 3:06am

Hey Hailey

Ive looked at your picture and that combined with your description of your hair loss, does indeed sound very familiar to the hair loss I experience; lots of broken hair only in the front, no eye brow loss and lots of baby/velus hair. However I do have a tiny spot on my frontal hairlin where it’s a little red inflamed. And I also have places where it looks like no hair is regrowing - though I don’t have this white shiny band,  some women describe. 

I have been to two different dermatologist. The first one told me I have androgenic alopecia (with the possibility of regrowth - I’m honestly not sure if that was true or he just said it to offer this very sad girl some much needed (but maybe false) hope). 

The second one took one good look (with some sort of camera or magnifyingglass or whatever..) and said Frontal Alopecia. I asked about the velus hair and his response was, that it will eventually fall out and turn into scarring. I asked about a biopsy (I’ve read here some says it’s the only way to truly confirm it), the doctors response was that he would gladly offer it but didn’t see the reason as he was in no doubt.  At that point I honestly didn’t feel the need or wish to have it done. All I wanted to do was to go home and cry. 

So yeah, I of course can’t tell you if you have or don’t have this diagnosis. It looks similar to the loss I experience, but then again, it’s really difficult to see just from pictures. The fact that you have recently given birth (congrats!!) could def also play a big part on your loss. So I would encourage you to see a doctor/dermatologist to hear their diagnosis. 

I hope you you can find peace in this and spend most of your time to enjoy your baby (and not fret over this too much - though I know it’s hard not to). From your picture it looks like it’s still in it’s really early stage, so maybe you won’t lose a lot more than this and some of the treatment can help. All the best! 

Permalink Reply by Miss Mymble on November 22, 2018 at 9:01am

Oh you’re welcome. You can feel so alone with this, so it’s truly a blessing with this group:) 

If indeed it isFrontal Alopecia you have, yes! There’s unfortunately a very big chance it will get worse. However, you may be one of the lucky ones that response well to treatment. And if it’s in the early stages you may be so lucky not to lose a lot more. Some women and doctors also says it will eventually burn out, but I don’t think you can predict if and when that will happen. 

Mine has unfortunately consistently gotten worse (I’ve lost about 2cm only in the front not the sides). I noticed it when I was about 36 years old (I’m 41 now). For years I was the only one who knew something was off. Lots of broken hair in the frontal region and later on loss. I showed my doctor and he dismissed it. Said it was nothing:( Years later it became obvious and I was referred to the dermatologist. 

The only treatment I have received has been some sort of hydrocortisone lotion to put on the hairline. I used it for some months but didn’t see any positive progress with it - so I actually stopped. My dermatologist have offered me Finasteride to try, but so far I haven’t felt peace about taken it. So for now I don’t take any meds for it. 

Diet-wise I eat pretty healthy. Everything organic and always home cooked meals from scratch. I do however occasionally dive into the land of ice cream and chocolate:) So yeah! I’m not fanatic when it comes to diet, still I want the quality of my food to be good. The same goes for the product I uses for hair and skin. 

Maybe I should add I’m not close to be menopausal (according to my gyno)  but I’ve always had some hormonal thing going on with unstable periods for years (also in my younger days). One gynecologist said it was def. PCOS another said I didn’t qualify for that diagnosis. - Just saying this as I have been thinking if this could be the cause of some hormonal fluctuations in the body.. maybe that’s also what’s going on for you after the pregnancy. Dunno. 

The time when I noticed my first loss was a very stressful time for me. Healthwise and work life. I had recently been traveling to India and suffered afterwards with different kind of parasites and also thyfoid. Recovering from that plus having a full time job as a social worker at a crisis center gave  me lots  of stress on my body and mind. After some time my body totally collapsed and now I have a diagnosis of Chronic Fatigue (cfs/me). Of course I’m also thinking if this is the reason for my hair loss. 

I feel it’s a mix of everything.

 My approach is now to try to live as stress free as possible (my other conditions also demands that) and try not to let this hair loss get me too down or steal my joy. 

I hope you can find a great doctor who will work with you. If you feel comfortable going the medicine route. I may do that in the future. Not sure yet. 

Srry for the rambling;) 

Permalink Reply by Miss Mymble on November 23, 2018 at 4:34am

Hormonal and stress is also what I think is  a big part of this disease. And then top it with all the different kind of chemicals we’re exposed to all over in the environment/food/water/products we use/medicine etc. - No wonder our bodies react to this toxic coktail:/ 

I hear your feeling of feeling lost! Oh my. When I first realized this as my new reality I felt I couldn’t breathe and woke up several times in the middle of the nights with a huge knot in my stomach and a feeling of drowning. It took time for me to accept this new normal.. and I’m still not  there yet. Which is okay - these things can’t be rushed. Still I feel I’m coping better with it little by little. I’ve allowed myself to grieve. To grieve over the loss of dead follicles and especially over the image I had of myself of one who truly looked young of my age and had great curly red hair (sigh). And to grieve over the shattered future image I imagined of myself of a woman who would age gracefully in my look (like my dear old grandma did). - Well, that prob won’t happen. Or at least not the way I imagined it would. However, I plan on age gracefully in my outlook on life.. To be still and accept there’s so much (if any) we can’t control (like this freakin disease) and to say yes to life anyhow. Also the uncertain and trust somehow things will still be okay. 

Dont know if this makes sense but somehow I’ve also discovered blessings with this disease (and my other health struggles). Blessings I definitely wouldn’t have chosen if I had the choice, but none the less, here they are. Blessings of vulnerability. Blessings of empathy to people who suffer and to the vulnerable parts in my self. Blessings of learning trust when I don’t have control. Blessings of learning to cultivate my inner growth more than my outwards appearance. 

I may sound  more together than I am with this. I still fret, freak out, get scared and have outburst of tears  at times when I look in the mirror or imagine how I will look in some years. And that’s okay. It’s a part of this.

And I also got  so angry when I realized I need to cover the expenses myself for “helper hair” if I chose to go down that route if/when this disease progress. I get frustrated by our supposedly good healthcare -system here in Denmark. It looks like it’s only the people who lose there hair temporarily that will get financial help for a wig/topper and not the ones who lose it permanent. WTF is up with that?! It just doesn’t make sense I really frustrates me. Yes! The money for help would be nice, but it’s actually more the lack of recognition of the great distress this have on ones life that bothers me. 

The way I cover the loss now  is with scarfs and cool headbands. Which I feel comfortable doing. There’s so many cool ways to wrap a scarf around your frontal hair and at times I actually feel it adds to my (wannabe bohemian style;) style. Get compliments on my look from people who don’t know I have FA. - I just wishI only had to do it for fun and not because I’m hiding something. 

I hope you don’t lose heart, Hailey. And I hope you have people in your life that can support you in this (though I know it’s difficult for people who don’t have this to fully understand the impact of this). Still sharing with a trusted friend is always good, I think. You’re of course welcome to message/text me here. However I love that this group is an open group and people can share from all over the world. Who knows if your words can help or encourage another  woman - or that someone (beside from me) reads your words and have some insight they can offer to you. 

Have you you made an appointment with a doctor/dermatologist yet? If not, maybe that would be a first good step to take.

All the best! 

Permalink Reply by Miss Mymble on November 25, 2018 at 7:15am

You’re righ.  the progression is not too bad, I guess. Still it is noticeable and the thought of not knowing how far back it will go can be quite scary a lot of the times. And it actually is so bad that I don’t feel comfortable to go without  a scarf or something. 

I have seen a functional doctor and also a gyno with a very holistic view (- to say the least). The first one to help me with the other things I struggle with health-wise and the last one to help me with the hormones. - And in all of this I  hoped and prayed that it would also help my hair.

I did some lifestyle changes with diet,  supplements and also bio-identical progesterone cream. I also did a strict candida-diet for three months and later went on a AIP-diet for three weeks. I know the last diet prob was too short to notice any improvements hair wise. But for me it just got to a point where it felt more stressful to always think about food etc. And I missed my daily one cup of coffee in the morning soooo bad;) So for now I’ve decided just to be mindful about my eating but in a way that is stress free and enjoyable. 

 I didn’t see any improvements with my hair while doing the diets etc, still I feel it’s beneficial for me to make sure I don’t eat too much “bad” food. If I give too much into my sugar-monster then I definitely feel my hairline itch more and the small patch that is sometimes is red seems more inflamed. So yeah, I’m sure it’s all connected somehow. 

You can try to search for AIP in this forum. I think other ladies in this group have tried it and shared their experiences here. 

I haven’t looked into toppers or anything yet. But must say I’ve been very encouraged to hear some of the positives stories about it on here (shout out to you CurlyK among others). A year ago I felt sick to my stomach when I thought about maybe having to go down that route. Now it doesn’t seem so scary anymore. But of course I still pray for a miracle of some sort.. Hoping my follicles are just hibernating and somehow they can be awakened in their own time :) 

Good luck on Monday!! Let us know how it goes. 

Permalink Reply by Miss Mymble on November 23, 2018 at 4:49am

Nope. No children here. But a one year old Stabyhoun pup who thinks I’m her mom.. ;)