AGA and Acquired Progressive Kinking

[BlueLilac]

I’m new here, but used to follow the forum for years. I’ve always had long hair, mine is butt length and it was always my favorite feature. My hair always grew super fast and was pretty healthy. Unfortunately I was blindsided by a diagnosis of androgenic alopecia AKA male/female balding. It’s a very long story and involves other health issues but I developed a TE shed a year ago and after 6 months of intense shedding and a full year since it ended I never regrew my hair and am now balding and receding in the male Norwood pattern in addition to diffuse loss. After drs dismissing my concerns for far too long, I was diagnosed based on the obvious appearance and the amount of miniaturization and vellus hairs I have. I wear tape in extensions now so I can keep my hair long, it’s all I can do. My bangs help hide my bald temples. I literally have 60 tape in extensions, without them I would have to cut my hair short and the extensions are for sure not the cause of my loss, it started way before and continues in areas there are no extensions.

Anyways I used to see some posts here about kinky bumpy pubic-like hair strands that were an off texture compared to the rest of one’s hair. I had these suddenly sprouting up out of nowhere and I continued to get more and more. Mine are confirmed to be Acquired Progressive Kinking, which is little understood by drs, as most things related to hair diseases and disorders are. It is often a precursor to AGA. Studies suggest AGA with APKH may actually be it’s own sort of subtype of AGA and it tends to be rapid and treatment resistant. In my case it seems to be proving true.

I’m praying I can slow down my hair loss, but I’m losing hope. My endocrine issues are very complicated and drs have all given me the run around and/or admitted they don’t know how to correct my hormone imbalances. I have issues with cortisol and prolactin, ruled tumors out, diagnosed with lean pcos then undiagnosed, only to be diagnosed again! In my case it’s essentially a trash can diagnosis. The issue is my lack of biochemical evidence, I have normal androgens, regular ovulatory periods, but was diagnosed with adenomyosis and diabetes end of last year. No one can explain my elevated cortisol or prolactin, but I know it’s destroying my hair.

I don’t know what the point of this post is, haha, I guess to introduce myself and complain about APKH, which is ruining the texture of my hair (what’s left that is!).

Anyone else here with APKH or AGA? I’m so depressed over this and borderline suicidal feeling some days. It feels like I’m losing my identity. I feel so defeminized, I have Norwood pattern, I can’t even bald like a woman! Women supposedly rarely have receding hairlines. Here are some photos. My hair with extensions, bangs, and hair tint looks great. If I could keep it this way forever I would be ecstatic. It won’t happen though. Every month is is thinner and thinner and I keep needing more extensions. It looks thick, but it’s not at all. In February I took my extensions out and the ponytail circumference was 1.5 inches. I used to be around 3.75-4 inches.

https://imgur.com/a/eq1UR0I

[lapushka]

Hi, and welcome to the forum.

It's nothing like your problems, but at the start of puberty, I lost lots of hair, age 13/14, due to hormonal imbalance (up to bald patches). After a year it "corrected itself". The doctor said to just... wait it out. Of course my mom got me hair vitamins and a lotion (in part to make me feel a LOT better), but I am so glad that got better. It is rough to go through at such a young age.

I would press to see an internist (doctor of internal medicine), if you haven't been already.

I am sorry to hear of your issues.

Welcome, again, to the forum!

[PillowBook]

I have random hairs with kinks in them (I didn't even know there was a name for this!) and also issues with hair thinning. In my case OTC Nizoral shampoo (1% ketoconozole, over the counter in the US [but also available in a 2% strength with a prescription]) used twice a week has corrected my thinning hair. Given the complexity of your situation I'm not sure it would do much for you but perhaps it might be something to look into? The OTC is not expensive and the Rx is covered under most insurance plans (and if it's not, you can get it for a reasonable price with a coupon from GoodRx). Might not hurt to try.

I should mention tho that Nizoral shampoo is pretty drying since the shampoo base is designed to help remove flakes, plaques, sebum, fungus, etc.. Make sure you have a good conditioner on standby.

As for your pictures, all I can say is that you are so beautiful-- large, dark soulful eyes and a delicate jaw... dainty little lips and a fine, elegant nose. Hair or no hair you are a stunner. I know this hard for you and I am so sorry you are having to endure this. My only advice is that the squeaky wheel gets the grease! Keep on your MDs and insist that they do more. I realize this is exhausting, difficult, and humiliating-- but you are worth it and YOUR HEALTH NEEDS MUST BE MET.

:blossom:

ps your wallpaper is wonderful and you have excellent taste in perfume

[BlueLilac]

I have random hairs with kinks in them (I didn't even know there was a name for this!) and also issues with hair thinning. In my case OTC Nizoral shampoo (1% ketoconozole, over the counter in the US [but also available in a 2% strength with a prescription]) used twice a week has corrected my thinning hair. Given the complexity of your situation I'm not sure it would do much for you but perhaps it might be something to look into? The OTC is not expensive and the Rx is covered under most insurance plans (and if it's not, you can get it for a reasonable price with a coupon from GoodRx). Might not hurt to try.

I should mention tho that Nizoral shampoo is pretty drying since the shampoo base is designed to help remove flakes, plaques, sebum, fungus, etc.. Make sure you have a good conditioner on standby.

As for your pictures, all I can say is that you are so beautiful-- large, dark soulful eyes and a delicate jaw... dainty little lips and a fine, elegant nose. Hair or no hair you are a stunner. I know this hard for you and I am so sorry you are having to endure this. My only advice is that the squeaky wheel gets the grease! Keep on your MDs and insist that they do more. I realize this is exhausting, difficult, and humiliating-- but you are worth it and YOUR HEALTH NEEDS MUST BE MET.

:blossom:

ps your wallpaper is wonderful and you have excellent taste in perfume

Thank you for the reply! I actually use nizoral/ketoconazole shampoo already haha, I get it as a prescription for the 2%. I’ve tried women’s rogaine with zero results, spironolactone also with zero results. I have a prescription for oral minoxidil, but I’m scared to start it because I can’t afford another shed. I’m taking vitamin D, MSM, biotin, other various vitamins and supplements, iron (which I monitor to make sure I don’t have high levels), spearmint tea (I have normal to low androgens, but I feel like if I can keep them even lower than that’s better because I clearly just have some sort of super sensitivity to them!

Doctors have been pretty useless through all of this, but I’m starting to accept there’s not much more I can really do. It’s all so strange though because I always had such thick healthy hair and then WHAM, it’s all going. Very sudden. And no women in my family have a history of hair loss or even thinning. I guess I get it from my dad. Or it is just the cortisol and prolactin imbalances. I do recall coming to this forum frequently searching for posts on what’s considered normal for hair shedding, I think I was always a shedder so perhaps that was a sign. I just never had density or recession problems until recently.

I think a lot of women have these types of kinked bumpy hairs, too. I seriously doubt it’s always APKH, or even if it is I bet it’s just under reported and the “rare” cases studied happen to be linked to AGA. I have friends who claim they find these hairs too and they have no hair loss, although my dad has them and his are exactly like mine and he has MPB.

Do you know the source of your hair loss issues? How long do you leave the nizoral on your scalp? I usually lather and leave it while I shave and shower then rinse, so as long as possible, haha. I think it’s supposed to help because ketoconazole can reduce the amount of DHT on the skin, probably by reducing sebum.

Thank you for your kind words, I really appreciate them! Also glad you like my wallpaper and perfume! :) I have a bit of an obsession with perfume, that’s only a small part of my collection.

[BlueLilac]

Hi, and welcome to the forum.

It's nothing like your problems, but at the start of puberty, I lost lots of hair, age 13/14, due to hormonal imbalance (up to bald patches). After a year it "corrected itself". The doctor said to just... wait it out. Of course my mom got me hair vitamins and a lotion (in part to make me feel a LOT better), but I am so glad that got better. It is rough to go through at such a young age.

I would press to see an internist (doctor of internal medicine), if you haven't been already.

I am sorry to hear of your issues.

Welcome, again, to the forum!

Thank you for the welcome! Do you remember what sort of hormone imbalance you had when you were young that caused the hair loss? The doctor you saw never gave any type of medications, they just had you wait it out? I’m assuming you must have had telogen effluvium, that’s what I started with and was told it would get better, but sadly it never did which prompted the AGA diagnosis. I still always hold out hope that maybe it’s just really bad CTE (chronic telogen effluvium), my hair loss derm thinks I have only “mild” AGA and it is CTE that’s making my hair so thin and receding aggressively. She thinks once I can get my cortisol in check then it should get somewhat better. I really hope she’s right!

[PillowBook]

I should have guessed you were already using ketoconazole! I'm sorry it's not fixing the problem.

As for me, I don't know why I had thinning hair and the last time I had my hormones checked was AGES ago (they were normal BTW) but Nizoral is doing the job. I leave it on for about 5 minutes twice a week.

I know it's demoralizing and draining to ask for help and then not get it but please don't give up! Keep pushing-- you are worth the effort. I hope there is an MD you can connect with who will NOT throw up his or her hands and leave you out in the cold. I'm rooting for you!

And I'm delighted to meet another perfume lover. I've got a pretty big collection too (trying to edit it but it;s really tough!) and it's a big comfort to me. I've got health issues too but perfume is always an escape and makes me feel beautiful. Hope you get that same lift from your collection too :toast:

[milosmomma]

Hi and welcome. I dont have any advice really besides finding a doctor who knows about cortisol and prolactin. Hair growth is from the inside out so I am too hoping that it will help to get you balanced out.
I also wanted to say you are gorgeous! I agree that you have great features and are stunning, regardless of hair.
I understand how it can make you depressed and just want to bring up that it's ok to reach out if you get stuck in a tough spot. I have many years of manic depressive episodes over the years and know that our feelings can get the better of us and needs a release. Whether it be a hobby, artistic outlet or therapy. Sometimes just opening up to a friend is enough. And know that you have us here at the forum as well :)