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Diffuse Thinning And Severe Nape Hair Loss

Discussion in 'Women's General Hair Loss Discussions' started by Amal07, Oct 6, 2017.

  1. Amal07

    Amal07 Member

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    Hello ladies!

    I've posted here a couple of times before and since then I haven't find any answers for my hair loss which makes me very sad and depressed.It's been now over a year since I've noticed my hair is thinning and falling everywhere.It seems like it's diffuse but the top of my head is almost intact when compared to the nape of my neck that is almost gone...My sides have thinned out,temples,back and nape just not the top.The only good thing is that nobody can noticed it really since everything is happening "underneath" but still my hair feels thin.Some say it's Androgenetic Alopecia other alopecia areata but i doubt it since I don't have bald patches anywhere and FPHL for as far as I know affects the top of the hair which is not the case.My mother is losing her hair but her sides,temples and nape are still thick and her hair loss is concentrated just on the top.
    I really don't know what to do anymore and I haven't find any case similar to mine.It's not the ophiasis pattern since there's no smooth skin,it colud be frontal fibrosing alopecia but I'm only 23 years old and for what I have read that usually affects postmenopausal women.As you can see on the pictures there is hair on the nape but just one really,really thin layer and it seems like my "neckline" has receded up......

    What makes me even more sad is that my life is turned upside down.My self esteem is non existent, I'm avoiding mirrors,people, any events...I was even thinking of quiting college since I don't want to be that bald girl...I'm afraid of future,of other people,changes...Every other night I cry myself to sleep and it makes me so sick sometimes that I just wanna fall asleep and never wake up....

    If there is anyone with any idea,clue,solution or even just a kind word it would really mean a lot to me because most of the time I have nobody to talk to about this problem which makes it even more hard for me....
     

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  2. 3monkeys&me

    3monkeys&me New Member

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    Hi Amal07,
    Diffuse hair loss is awful. I'm so sorry you are having to deal with it. Please know that you are not alone!
    I haven't seen your other posts so I'm going to ask a lot of questions. Hopefully something will spark an idea or new direction to take: Have you seen a dermatologist?(not always helpful but a place to start) Done labs? (ferritin, vitamin D, hormone and thyroid panels are a good place to start) Have you had a scalp biopsy? (Hurts like hell, not always conclusive but may provide an answer) Are there any potential environmental factors? (Allergy to shampoo, neckline rubbing on collar) Have you met with a naturopath to discuss potential nutritional deficiencies? (B vitamins, zinc, magnesium, etc...) Are you experiencing any other symptoms that a specialist or PCP may be able to explore?
    Hang in there!!
     
  3. Amal07

    Amal07 Member

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    I have experienced some other symptoms like VERY oily skin and hair, excessive hair growth on every other place just not on my head :( I know that a lot of these symtpoms sound like PCOS but I had my ultrasound done and there are no cysts, my periods are regular and on time...

    In the meantime I have noticed some red spots on my nape and it has thinned out even more just like the rest of my hair.. Temples and sides especially, top not so much, no changes or wider part...

    I'm wondering if it's possible to have pcos with no cysts regular periods and no insulin resistance, just losing hair having very oily skin and hair and excessiv hair growth...I am also very skinny and have trouble gaining weight... Some of these things just don't sound like pcos...and of course there's a lot of anxiety every day and night and every minute of my life..

    P. S. Here are recent pictures of my nape and these odd red spots which don't hurt or feel itchy...
     

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  4. Amal07

    Amal07 Member

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    More pictures....
     

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  5. MissNJ

    MissNJ New Member

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    I'm posting here after coming across your post. I can really identify. I'm 39. Always had fine hair but a generous amount & in great condition. Friend was a hairdresser so always used the best products from bring a teenager. I shed a couple of years ago & noticed my hairs thinner, diffuse & miniaturising. Mainly above ears & nape. Crown & parting are slightly thicker. I'd say I now have half the hair I had 5 years ago. I've had blood tests, a scalp biopsy. No official diagnosis only ' possible non scarring androgenic alopecia' despite three hospital check ups. My iron was a little low but all hormones ,thyroid fine & I took Ferrous Fumerate for a year to get my Ferritin levels normal. The doctor said this is a cosmetic issue anyway & I'd have to purchase the Minoxidil ( Regaine) every couple months ( £35 a time & NO GUARANTEE it will work!) Nhs won't prescribe unless you have cancer or a definite longterm condition . It's caused anxiety, depression . My hair is always up as it looks like rats tails when down. I have an amazing diet , i dont straighten my hair & let it dry naturally most of the time. I have monthly head massage, oils, all the vitamin supplements & not been on any contraception for a year. Nothing helps or changes. I feel for anyone experiencing similar symptoms but feel only a private trichologist could help which is costly & they probably can't offer any further insight than an NHS dermatologist or blood expert. If I went bk to my doctor I know the same tests would just be repeated with same outcome. I personally feel this is stress related. If anyone pinpointed the issue it would be great to hear about cures or if the cycle eventually returned to normal with photos. This post seems really negative but there are no real answers,even when they go back into your medical history. I have had continuous stress despite being a,strong person. So I can only assume, its that as all contraception has left my system, I don't smoke/ drink, I haven't just had a baby, I eat well,I look after my hair, there's no genetic connection on mum or dads side. I've spent years googling but to no avail. X
     
  6. MissNJ

    MissNJ New Member

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  7. Amal07

    Amal07 Member

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    Omg!!!
    I thought that was my picture!!
    It looks just like mine right now.

    I'm so sorry you are going through this, I feel your pain,especially when you know you are doing everything right abd and the hair just keeps falling.
    I'm 23 and I'm wondering will I go completely bald because with the amount of hair loss right know and the severe nape hair loss that seems like the only outcome... It makes me very sad, especially because I want to have a child in the near future and that scares the hell out of me :(
     
  8. MissNJ

    MissNJ New Member

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    hi Amal07 ..... We'll during pregnancy age 22 & 29. My hair was actually thicker. After all the googling, docs appointment etc- my only conclusion is stress or excessive DHT, yet, all my blood results were normal. Had them done twice in a year. The miniaturisation ( thinning above ears/ nape) is due to the hair in follicle growing back thinner & was pigmented, almost a cream shade. My hair is mid way down my back so my hair is growing, its just the texture that's finer, mixed in with 50% healthy hair...i can only suggest hair burst supplements or Phytoworks which are v expensive & only available online. ... The good news is that , you do have some hair thats healthy & growing. All the doctor trips cause more stress. I advise lots of dark green veg & iron rich food, washing hair 2/3 times a week to stimulate the scalp. Google hair miniaturisation / DHT . It shows good diagrams. I try to go on website about thinning more than loss. Hope u get some answers or time changes your hair & te cycle eventually returns to normal. Sounds like our hair d at all different stages of the growth cycle. you are not alone, this is more common than we realise . X
     
  9. angel84

    angel84 New Member

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    Hey, have you found out what is the cause of your hair loss?

    When I look at your picture it is the same as I have taken my own.

    My dermatologist said it is stress related when I went 4 months ago. I Goggled a bit and found condition alopecia areata ophiasis which starts from nape area so thought this might be it, although like in your case I don't have complete bald patch, just very thinned.
     
  10. Amal07

    Amal07 Member

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    Hey angel84!

    No, I haven't find the cause of my hair loss.
    One doctor said it could be the combination of Androgenetic Alopecia and TE, the other one said it could be some type of alopecia areata but as you have said there are no bald patches just very thinned out hair. It creeps me out so much when I feel cold air on the neck where my hair is supposed to be

    I have some weird redness on my nape, no itching, burning or dandruff just redness. I don't know if that could be something which is causing hair loss. I googled it and the only thing that came across is inflammation but my skin does not feel burning, itching, sore etc.
    I'm really confused...

    Do you shed from the entire head or just your nape?

     

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  11. Amal07

    Amal07 Member

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    Here is a better picture of that redness
     

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  12. angel84

    angel84 New Member

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    It is very noticeable in the back and the hair quality is worse there. I am maybe thinning all over but it is not as noticeable on other parts.
    I had to cut my hair much short (to sholders height let's say) because when it was longer on the back it was very sparse and it looked ugly. No when it is shorter when I pull my hair up it looks similar your image, and my pony tail is incredibly thin...

    My dermatologist said it is stress related, said chronic TE and that is it. None of the shampoos or vitamins helped really and my blood work was fine.
     
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  13. angel84

    angel84 New Member

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    I don't have any redness.

    As I have said my main concern is alopecia areata ophiasis since some of the pictures look very similar. Don't know if all of this can be just from stress.
     
  14. Caitlin

    Caitlin New Member

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    I'm honestly shocked to find someone in almost the same situation as me. I'm only 20 and have noticed my hair thinning on the sides above my ears and severely at the nape of my neck for the last 5 years it has gotten so bad now that I feel my only option left is to shave my head which is so depressing my long blonde hair has always made me feel like that's who i am so I'm trying everything within my power to hopefully get my hair back. Bandanas and headbands have become my best friends and I finally have invested in a wig but haven't built up the courage to wear it yet. I have been to 3 different dermatologists, had 3 biopsys done among thousands of rounds of blood work the only things that have been red flagged is i have really high dht sulfate levels which we are now treating with spirnolactone but same as others my biopsys have come back essentially inconclusive they say they don't think it is ophasis pattern alopecia only becasue they say I don't have that type of inflammation which I'm not sure I believe as my hair loss follows that exact pattern which terrifies me I just want to be sure we are treating it the correct way. My biopsy also turned up with what they call an abundance of normal bacteria and an excess of mites so they are also treating with topical clindamycin twice daily and medicated shampoo. I'm currently also taking nutrafol vitamins, omega 369, b12, and d3 to try and help my hair grow back as healthy as possible if possible at all. I have one more endocrinologist and an appointment at mayo clinic with one more dermatologist and I'm praying we can finally get more answers than just possibilities. I wish you nothing but luck I highly recommend getting on some good vitamins and researching a skilled dermatologist and never accept just one opinion get all your doctors to talk to one another and do your research I have found more answers on my own than my own doctors. Not the best photos but most recent ones I have. 20180107_002555.jpg v 20180107_002555.jpg 20180107_002555.jpg Snapchat-1401053915.jpg
     
  15. Amal07

    Amal07 Member

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    Hey Caitlin!
    Thank you for replaying.
    I'm so sorry that you are going through this..i know how you feel..the feeling of the cold air on my nape even when my hair is down creeps me out so much...
    Has any doctor said that it might be Androgenetic Alopecia? I have read that in late stages Androgenetic Alopecia affects back of the head and nape. .. What confuses me is that my hair loss is still pretty thick in other areas except for nape and temples...
    I can't really tell from your picture but are you also experiencing redness in nape area?
    Btw this the top of my hair, im noticing a lot of new regrowth but not in nape area..
     

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  16. Caitlin

    Caitlin New Member

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    The first time they diagnosed me with androgenic alopecia then they did another biopsy and said they weren't really sure but they didn't think it was ophasis pattern. I fall into the category for several types of hairloss but with only one symptom each so they can't pinpoint what my cause of hairloss is 90 percent of my hair loss is above my ears and severely at the nape of my neck I do have occasional redness on the nape as well. I do have minituraization that fits into androgenic alopecia but becasue my hair loss started at the nape of my neck they don't believe it is caused by androgenic alopecia it started at the nape and the sides and has only recently began to show signs of thinning in my part.
     
  17. Georgina

    Georgina Established Member

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    I was just going to make my own post about this. I have diffuse thinning but the worst part was the entire circumference of my hairline receded and the whole lot was miniturised. The first place I noticed was my nape, and then as the months went by it got worse and worse around my temples, ears, sides to ththe point where I could not wear my hair down, and then eventually couldn’t tie it back because it looked moth eaten and freakish. Like my hair was evaporating from the outside in, but also getting thinner everywhere. I believe this is called DUPA - diffuse unpatterned alopecia, or retrograde alopecia. They are similar. Some of you seem to have retrograde.

    Bit of back story - I have very low estrogen which was caused by teenage anorexia. Basically everything else was ok except from my E levels. It’s called hypogonadotrophic hypogonadism. Around the time of this diagnosis I also had scalp biopsies which came back as androgenetic alopecia. I was put onto Diane 35 the pill, 200mg Spironolactone, 5% topical minoxidil and 2mg oral minoxidil. I got bad shedding at first but it regrew a lot of hair... at first. I ended up dropping Spironolactone almost a year after taking it because my hair was still thinning and it made sick. I also noticed that, whilst minoxidil regrew my hairline, this is only temporary. I’ve been on it now for 2.5 years and I go through constant hairline regrowh and recession cycles. Like the minoxidil works for 2-3 months, then just stops. I’ve spent a lot of time looking for answers, and I have theories but I’m still lost.
    3 months ago I began taking avodart/Dutasteride 0.5mg (to inhibit dht) every day. It may be too early to tell, but my hair is still only getting worse and I’m still going through the recession process. I have also begun using a topical anti androgen called darolutamide (its the strongest anti androgen known to man and is highly experimental. I do not recommend this, and I take it at my own risk). Still my hair just gets worse and I have a lot of miniturisation. Something is telling me that a piece of the puzzle is missing. My next step is to throw myself full throttle into experimental mode and take an autoimmune anti inflammatory called Sulfasalazine. It can be used to alopecia areata. I have “non specific inflammation” as per my biopsy, so I wonder if some of this isn’t some kind of mix between autoimmune responses and Androgenetic Alopecia. I guess if it works, I’ll know. I should also add thag I have thinning of eyelash and eyebrow hair. This is in keeping with estrogenic “menopausal” type hairloss, but taking estrogen never helped that. I’m hoping to stop this awful process of hairline recession and all over loss/miniturisation. At the moment, I’m already basically throwing a nuke bomb at my hair. The other options left after PDG2 inhibitors like Setipiprant, but those are far too expansive at the moment. I already spend a stupid amount of money on hair products. Points I want to make:
    - This pattern of loss is seen in both men and women, and sometimes can be genetic
    - It can also be seen in menopausal women, and can be due to low estrogen
    - You need to look out for miniturisation. If you notice that the hairs around your hairline are getting thinner, weaker, and then disappearing altogether, then you need an anti-androgen, dht inhibitor and a growth stim. minoxidil would be a good place to start.
    It seems to only partially work for me, but maybe others will have a more consistent experience and I’m just unlucky.
    - check for autoimmune blood work.
    - RULE OUT ANAEMIA

    Hope you all have better success than me, whose only got it for 3 months out of the bloody year!

    I’ll attach a photo of my hair from years back before loss, then the year it began receding and thinning. Doesn’t look like either anymore because it’s all over thinner but my hairline is slightly better (but receding again).
     

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    #17 Georgina, Feb 11, 2018
    Last edited: Feb 11, 2018
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  18. Barbarina

    Barbarina Established Member

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    Georgina, you have a body to die for. And even so this forum is meant for hair, would you mind telling me more about your diet choices and exercises. I do go to the gym regularly, but I am by far not as slim and well-toned as you.
     
  19. Georgina

    Georgina Established Member

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    Barbarina, firstly thank you very much, but I am currently much heavier than in those photos, particularly the right! I was FAR too thin in that photo and that was mostly due to all the stress and hormonal issues I was going through that year.
    I’ll attach a photo of what I currently look like (much healthier).
    As for what I currently do exercise-wise, I do a combination of crossfit style weight training/cardio and general bodybuilding weight lifting. I also tend to just walk everywhere incidentally.
    I think resistance training is the ultimate form of training for anyone, and is great for all over fat loss and muscle tone. I train 6 days a week and do a mixture of “heavy” and “lighter” lifting days. For cardio I do crossfit circuits, rowing, spin cycling, running, boxing and skipping. I think ultimately it’s about what YOU enjoy doing, as long as it gets you moving. It could be a team sport, dancing, running- whatever! What do you enjoy? I think it’s imprtant to start with something that isn’t like a chore to do, and expand from there. If you want to get into weight training, I’d suggest maybe looking at getting a personal trainer once or twice a week just to learn the ropes, of alternatively, if there are any crossfit gyms in your area, go along to a beginners class. At the end of the day, it’s about being healthy and enjoying the process, not punishing yourself or doing it for the “ideal” body. Best of luck my love!
     

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  20. valentinab00

    valentinab00 Established Member

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    You look awesome, Georgina. And I don’t mean just your physique. Very inspiring.
     
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