My 2 year long testosterone usage triggered my scalp to get androgenic alopecia (a genetic condition) decades earlier than it naturally would’ve, at only 23 years old. (My story, and my advice to other detrans women)

[u/Chelstrawberrymuffin]

I was on T for 2 years, and during this time my temples became sparse (which was to be expected). But not only that, my hair strands also became thinner, my hair texture changed (normally it’s curly but it became wavy), and I experienced slightly wider hair part lines/scalp exposure. My hair color also appeared lighter, from a super dark brown (almost black) to a lighter brownish color.

I brushed all of this off as “Well, my temples are just receded because I have a masculine hairline now. And the hair texture and color change? Probably just hormones… I’ve heard that people’s hair texture can change after big hormonal shifts.”

I have been off T for 3 years now, and none of these hair changes have resolved themself much at all. And my hormone levels are normal! The only thing that has “fixed itself” is that I have a lot more wispy downy fine baby hairs that grew in along my hairline. But other than that, the hair shedding, the extra scalp exposure, super sparse temples, and hair texture and color change was still there.

I thought to myself “why isn’t this going away? I’ve been on my natural estrogen for 3 years. Maybe this is how my scalp/hair will be permanently.”

Then, randomly, in the last 3 months, it randomly started getting WORSE. My temples started receding back even more and I experienced even MORE constant shedding. I decided enough was enough and ordered a scalp biopsy test so that I could get an official diagnosis (if there was one). I was prepared for the results to possibly come back as “inconclusive”, but I figured that getting my follicles examined on a microscopic level was my best bet to figuring out what’s going on.

My diagnosis results? Androgenic alopecia.

I came into the dermatologist office to discuss my diagnosis with her, and plan the treatment. She told me that this is a genetic condition and that my hair follicles are genetically programmed to be sensitive and shrink in exposure to even NORMAL DHT levels. I asked her if I should order a lab to get my DHT levels checked. She told me it’s not really necessary in her opinion because with androgenic alopecia, even if the DHT is normal or even low, the follicles are still sensitive to it and shrink in response to it. She said it’s more about the sensitivity level to the DHT, not necessarily how high the DHT is.

I admitted to her about my past of being on testosterone for 2 years when I thought it was trans and asked her if this could’ve contributed to this. She said “actually yes. You probably would’ve gotten androgenic alopecia/female pattern hair loss down the line anyway, but you taking testosterone probably triggered it to happen much sooner. Like a couple or few decades sooner than it would’ve happened normally. Unfortunately, once it gets triggered/activated, it doesn’t go away, and tends to be a lifelong condition, but you are young and you caught this relatively early, and your hairloss is relatively mild, so I’m optimistic about you experiencing some regrowth with treatment.”

I asked her “Why don’t all detransitioned women get androgenic alopecia? You’re saying that you have to have a genetic susceptibility to it in the first place?”

She said “Yes, you have to have genetics that make your hair follicles sensitive to DHT. The detrans women that experience full regrowth probably aren’t genetically sensitive to DHT.”

And she proceeded to try to console me by telling me not to feel too bad about the testosterone/transitioning thing, she said various things can “trigger” androgenic alopecia in a genetically susceptible person, not just transitioning. She said PCOS can trigger it, random hormonal shifts can trigger it, taking steroids can trigger it, or even certain birth controls can trigger it, or just natural aging.

She prescribed me with oral minoxidil (to stimulate growth) and oral spironolactone (to supress DHT levels). She told me if oral spironolactone doesn’t work for any bizarre reason, she will possibly look into finasteride for me but she said she doesn’t like prescribing that to women. And she said she thinks the spironolactone will work anyway.

She told me (paraphrased, not the exact wording): “Expect to not see any results at all until about 6-12 months. Just keep taking the pills everyday, even if you see no progress, it’s important you keep taking it everyday and don’t skip days or randomly stop. You’ll revert the progress if you stop. You’ll have to take these pills for life. Unless of course, you just don’t want the treatment anymore. In your case, considering your hormones are normal and you don’t have PCOS, this isn’t something you HAVE to treat. It’s not like, a dangerous condition that negative impacts your genuine health functioning, it’s mainly just a cosmetic condition. If you grow up and get older and don’t want to do it anymore and want to rock hair pieces or hair toppers or wigs, or just wear your hair naturally however it is, you have the right to do that. It’s not MANDATORY to take these pills everyday the rest of your life. As long as you’re aware that the hair loss will progress and won’t improve without treatment and you’re informed of that, you can take whatever path you want to”.

Soooo… yeah, long story short (and sorry that this was so long), I see a lot of detransitioned women online say that once they stopped T, their hairloss reverted. Which is great! But if yours DIDN’T revert, OR randomly starts getting worse like mine, look into getting a diagnosis because if you have genetics that prime you to be sensitive to DHT, it’s possible that testosterone could’ve triggered this genetic condition to happen earlier than it would have, if not for the testosterone exposure.

This is not supposed to be any sort of fear-mongering, this is supposed to be helpful and advice that I wish I’d gotten. So many friends and family of mine said “you can barely even see any hair loss, you don’t need a scalp biopsy!! Plenty of women have sparse temples.” So I almost didn’t even go get a biopsy bc so many people kept telling me that I didn’t look like I needed it because my hair loss wasn’t “severe enough”. But I’m glad I got the biopsy because androgenic alopecia is a lifelong, progressive condition (which means it continues to only get worse and worse without treatment), so if I would’ve listened to everyone and not got the biopsy, I’d still have no clue that I have this genetic condition right now.

So if you’ve been off of testosterone for years, and your hair loss and scalp exposure is showing no signs of improvement and in fact, is seemingly getting worse, I suggest going to examine your hair follicles for a diagnosis. It may not be androgenic alopecia, it could be anything, telogen effluvium, alopecia areata, nutrient issues, thyroid issues, low iron, but after ruling out nutrient and thyroid, if it’s STILL going on, then yeah I definitely recommend getting an examination or biopsy.

I just wanted to share my story incase anyone is going through anything similar or is struggling with hair loss or suspects it’s possible that their testosterone usage could’ve triggered androgenic alopecia.

TDLR:

I was on T for 2 years, off for 3 and during the past 3 years my hair loss, increased scalp exposure, and hair strand thinness did not go away, if anything it seemed to slowly be getting worse.

I got a scalp biopsy and was diagnosed with androgenic alopecia, a GENETIC, lifelong condition that my doctor said was likely triggered to start DECADES earlier than it naturally would’ve, due to my testosterone usage. I am 23. She said it probably would’ve happened when I was middle aged/menopausal, but the testosterone usage likely upstarted/triggered it to begin MUCH sooner.

So if you are a detrans woman and have been off T for a long time and your hair loss is not improving at all, or getting worse, I highly suggest first checking your nutrient levels (most importantly vitamin D, biotin, Iron, and Zinc), and your thyroid functioning. If those come back clear and nutrients and thyroid isn’t the issue, then I suggest getting an examination or even a biopsy like I did to examine your hair follicles closely, to get an official diagnosis.

There are many hair loss conditions, there’s also alopecia areata, frontal fibrosing alopecia, lichen planopilaris, CCCA, temporary telogen effluvium, traction alopecia, triangular temporal alopecia, and more. It’s best not to blindly guess what it could be, it’s best to intervene early and get your hair follicles looked at and start treatment asap.

P.S: Sorry if there are any typos! I’ll fix them later. I wrote this real quick before my work shift because this has been weighing on me eversince I recently got diagnosed a week ago, and I felt the need to share my experience.

[u/brightescala]

I take minoxidil and spiro too and am fine taking it for the rest of my life as long as I don’t lose access!! Míno is easier to get prescribed than spiro. But my doctor told me spiro was to stop the body hair effects of mino more than anything else in our use case. Did your dermatologist tell you that?

[u/Chelstrawberrymuffin → u/brightescala]

Hmmm, it is true that spironolactone DOES help prevent unwanted body hair growth while on minoxidil, but that’s definitely not the PRIMARY use of spironolactone for women with hair loss, not at all!!!

The primary use of spironolactone (in women with diagnosed androgenic alopecia) is to supress androgens and DHT and prevent them from shrinking your hair follicles. Once spironolactone blocks off the androgens and DHT that are responsible for shrinking your hair follicles, then the minoxidil can work at its full capacity and help encourage hair regrowth (even if it’s not 100% regrowth).

What is your hair loss diagnosis? Do you have androgenic alopecia (which is a genetic condition that makes your hair follicles shrink when exposed to DHT), or do you have something else?

Because if you don’t have androgenic alopecia then I guess that makes sense why your doctor said that. Spironolactone can be used for various purposes! It can even be used to clear up stubborn acne or make PCOS symptoms less severe or go away entirely.

So depending on your actual hair loss diagnosis, the doctor will decide to use certain drugs for different reasons.

[u/brightescala → u/Chelstrawberrymuffin]

Thanks. That makes sense. Tbh I don't remember.... it's been a few years since I went. I do believe she said I had genetic hair thinning but she didn't give me an official androgenic alopecia diagnosis. What's your dosage if you don't mind my asking? For me it's 25 mg spiro daily and 2.5 mino every other day.

[u/Chelstrawberrymuffin → u/brightescala]

Of course I don’t mind you asking :)

My dose is 2.5 mg minoxidil right now, and 50 mg spironolactone. (Both daily).

My doctor said as long as I don’t experience unwanted symptoms, she would be willing to go as high as 5 mg minoxidil a day.

And she said she’s going to upgrade me to 100 mg spironolactone soon, she said she wants my body to get used to the 50 mg dose first.

Usually a dose of atleast 100 mg spiro daily yields the best results for women, so I would look into asking your doctor to increase your spiro dose if you’re still struggling with your hair! Your 25 mg spiro dose is a bit low! :o But maybe you just don’t need a higher dose, who knows. Honestly, everyone is different and not everyone needs a high dose. And sometimes a higher dose can just give unwanted side effects. Like for example, if you have low blood pressure or kidney or Potassium issues at all, then your doctor is likely NOT going to increase your dose because it would be dangerous for you.

She likely isn’t gonna increase you from 25 mg straight to 100 mg, she will probably bump you up to 50 mg first because spiro is something that the body needs to adjust to (preferably for atleast 4 weeks).

My doctor told me that the MAXIMUM dose that doctors will prescribe to women with hair loss is as follows:

• MAXIMUM MINOXIDIL DOSE:
5 mg daily.

•MAXIMUM SPIRONOLACTONE DOSE:
200 mg daily

So technically, if you’re still struggling with hair and you feel like your body might need a higher dose to respond better, you could hypothetically find a doctor to get you to a dose as high as what I just listed. But if you feel like your current dose is enough, then there’s no need!!!

My doctor said that those high doses are only for women with AGGRESSIVE hair loss or a very high sensitivity to DHT.

If you have any other questions about hair loss or hair regrowth or medications, feel free to keep asking me here in comments or DM me! I’ve done a crap ton of research on this topic.

[u/brightescala → u/Chelstrawberrymuffin]

Interesting! The other thing my doc said is that our bodies build up tolerance to minoxidil. So our rationale with starting with 1.25 daily (I either split the pill or take every other day) is that I can increase the dose as time goes on. Did your doc say that too? Im rather young (in my thirties) and do plan to take until I die basically (or don’t care anymore). I’d say my hair could be better but it’s not bad.

[u/Chelstrawberrymuffin → u/brightescala]

Hmmm, no my doctor did not say that, she just said that eventually your hair growth results will reach a “plateau”, where no higher dose of minoxidil will do anything to simulate more growth, basically meaning that you reached the max amount of growth that minoxidil can give you, but you still have to take it for life to keep whatever results minoxidil did give you, even if it’s not a dramatic change.

There’s no scientific published study that says that humans build a resistance to minoxidil, but there is evidence that humans reach a plateau and minoxidil can only do “so much”, as it’s not a magic miracle drug.

But to be fair minoxidil doesn’t have a ton of backed up research to begin with (since using it for hair loss is technically using it for an off label purpose/ a purpose it wasn’t originally intended for), so who knows what future scientific findings will come out about minoxidil in a decade or two or three. I’ll continue to stay updated on any scientific findings that come out about minoxidil and spiro. It’s good to stay aware even decades from now, if we intend to be on this drug for life, we gotta stay informed!

[u/brightescala → u/Chelstrawberrymuffin]

Interesting. My doctor said different things! Lol. Well clearly it works so that’s good.

[u/oldtomboy]

It's a really common problem with women on T and I'd be surprised if someone said they fully reversed it after they had lost hair. Growing out your hair does a lot to hide where it's receeded and there may be some wispy regrowth. But where it's fully miniturised there's not much to he done.

To be fair I did give up on using minox so that might have had more effect but there's been little change in the 4 years been off. It's not too bad so at least I can hide it fairly easily.

[u/Chelstrawberrymuffin → u/oldtomboy]

Minoxidil doesn’t do much on its own for people with Androgenic alopecia, but minoxidil combined with an anti androgen/DHT suppressant like spironolactone, finasteride or dutasteride yields much better and impressive results, especially if the follicles only recently miniaturized. Yes, ive been showing symptoms for 3 years, but I’ve only had mine get significantly worse in the past 3 months, so my doctor is pretty confident I’ll experience good partial regrowth, because when it comes to the timeline of hair loss, 3 months is basically nothing. The earlier you intervene in the follicle miniaturization process, the more that regrowth is likely.

So if the follicles have been miniaturized for a very long time, (many years), it’s possible that the minoxidil and anti androgen couldn’t do anything for that follicle. But if the follicle has only been miniaturized for a brief while (a year or two, or so), then it’s very likely that the follicle will return back to a relatively normal size again. Miniaturized follicles are not dead or incapable of producing terminal hairs, they’re just dormant and asleep basically, and if you intervene fast enough, they can “wake back up”. The longer you wait, the less likely your chances are, though. But I’ve even heard of stories of people with androgenic alopecia for like ten years who still experiences partial growth on minoxidil and an anti androgen, so it really just comes down the the individual. Everyone’s success story looks wildly different. Some people report that their hair looks just as thick and full as before the diagnosis- or even thicker than before, while some barely regrow anything. Hair loss and hair regrowth is a very individualized process and no two regrowth stories will look exactly the same. And there are aspects of your DNA determines how responsive your body is to minoxidil. Some people’s body is highly responsive, some people aren’t.

Were you on an oral or topical anti-androgen? If not, I highly recommend that, because for hair loss triggered by excess androgens, minoxidil won’t do much of anything on its own, other than give you more baby hairs and vellus hair and that’s about it.

[u/recursive-regret]

Your derm is pretty good. Most derms wouldn't be that helpful when you ask them to explain androgenic alopecia. Most won't reach for oral minox as a first line of defense (although its very necessary imo)

The only thing I can think of adding here is that AA is extremely common. It's a genetic condition that ~70% of humans carry. Not all of them are equally sensitive of course, most won't start seeing visible thinning until their late 30s-40s. But ultimately, it ends up catching up to most people

[u/Chelstrawberrymuffin → u/recursive-regret]

Yeah she was very thorough and explained a lot of things very well, also handled me disclosing my past with testosterone very professionally (didn’t ask intrusive questions or act like it’s bizarre). She told me the same thing can happen in women who take steroids for gym related purposes, it can trigger their underlying genetic predisposition.

And yes, it is one of the most common hair loss conditions in both men and women! I just was shocked that i got it so young at 23, but my doctor told me that a lot of young women in their 20s who never touched T a day in their life start showing signs of androgenic alopecia too, so it’s nothing super rare or unheard of.

And I totally agree that minoxidil is pretty much essential. Especially oral. Some people who aren’t responsive to topical, are responsive to oral due to people have differing levels of the enzyme SULT1A1 and the level of SULT1A1 enzyme is one of the factors that determines how well you respond to topical minoxidil (I think if you have low levels of that enzyme, you’ll see lower regrowth success and just less regrowth in general). Oral minoxidil is metabolized in the liver though, so that enzyme doesn’t matter as much for the oral. That’s why I asked my doctor to get on the oral. Not only because I have pet cats and it’s deadly for them to lick or eat, but because I knew more people are likely to respond to the oral.

[u/Exciting_Ad8466]

I haven’t had a scalp biopsy my derm was like yeah you got it. I started taking finasteride even before I got off T and I think I’ve had some improvement but nothing crazy. I appreciate you sharing I had a lot of hope when I first got off cause some other women had a lot of improvement, but sometimes it doesn’t happen.

[u/Chelstrawberrymuffin → u/Exciting_Ad8466]

Yeah sometimes they are pretty confident with their diagnosis even without a scalp biopsy. I just pushed my doctor for a biopsy bc I wanted to be 10000000% sure. She already suspected androgenic alopecia and the biopsy just confirmed it.

Aww, I’m glad you’ve had some improvement even if it’s nothing crazy. Are you on oral or topical finasteride?

[u/Exciting_Ad8466 → u/Chelstrawberrymuffin]

I'm on oral. I switched clinics and my new doctor said she would refill it then she didn't so I had to go back to my old doctor. It's not bad

[u/nel_222]

Thank you for sharing! What kind of doctor provides this type of care? 

[u/Chelstrawberrymuffin → u/nel_222]

A dermatologist (which is a doctor who specializes specifically in skin, hair and nail issues.)

I searched up local dermatologist clinics near me! I made sure to look for a place with actual doctors, and options to get pathology tests done, not AESTHETIC-related hair places (because those places mainly focus on aesthetic aspects of hair issues- like hair transplant services, low level light therapy services, stuff like that. They don’t really tend to deal with stuff like official medical diagnosis, extracting scalp samples for biopsy, etc).

I wanted someone who would actually DIAGNOSE me to determine the MEDICAL CAUSE, not just do cover-up procedures to mask the hair loss. I wasn’t looking to mask it, I was looking to understand on a molecular level what exactly was happening with my hair follicles, whether they were scarred, miniaturized, under immune system attack, or just totally dormant and basically inactive/dead, or what.

[u/nel_222 → u/Chelstrawberrymuffin]

Thank you so much! This is so helpful to know. I’m currently dealing with this near my temples, and it’s a very defeating feeling, despite the numerous products I use. I will look into this next and I’m wishing you all the best with treatment! 

[u/Chelstrawberrymuffin → u/nel_222]

I’m so glad it’s helpful. I would recommend requesting the doctor look at your scalp with a dermoscope, or getting a scalp sample to be sent to be examined in the lab. I do NOT suggest just letting the dermatologist do a visual examination. Those really don’t tend to give the full story of what’s going on and can be very inaccurate because some hair conditions, you can’t tell just from the naked eye.

If they try to just look at your scalp with their eyes, you can push further and say “Actually, I want to ensure I have the most accurate diagnosis possible, so I want to get a scalp biopsy so that I know with full confidence and certainty what’s going on.”

Ranking examinations from least accurate to most accurate diagnosing power, I would rank it like this:

1.) Visual examination (where they just look with their eyes).

2.) Dermoscope or densitometry exam or some similar magnifying tool like that.

3.) Scalp biopsy.

Scalp biopsies tend to tell more of the “full story” and can give more answers. But even they have their downsides too, like for example, your hair follicles are not all the same across your entire scalp, some areas on your head are unaffected by certain conditions, while some areas are affected. Or you can have two or more types of hair loss conditions at once, and if the area on your scalp where the doctor took the sample doesn’t show both of them, then the diagnosis may miss the other half of the story. The doctor will try his or her best to select the best sample spot though. They will usually take a sample from where your hair loss is the worst, or the border of where the hair loss is extending. So, scalp biopsies are really good as long as the doctor selects a good spot to get a scalp sample from, and doesn’t choose a crappy spot. Also, my doctor told me that biopsies sometimes cannot detect hair loss conditions that are super super early stage. Yes it is good to catch hair loss conditions early, but sometimes if it’s TOO early in progression, then the test may not even show anything and results could come back looking normal because super early stage hair loss conditions can sometimes look “normal” under a microscope at first.

So the sweet spot to get a biopsy done is not wayyyyy too early before the condition has even advanced enough to detect it, but not late either. So basically, relatively early. Sometimes biopsy results may come back as “inconclusive” too, so be prepared for that possibility- if they can’t diagnose anything with certainty.

Bur despite the potential “downsides” I still highly recommend anyone struggling with multiple year long hair loss with no improvement to get a biopsy done because it has a pretty dang high accuracy.

Sometimes a doctor might be super confident in her diagnosis without the need of a biopsy though, so it’s up to the doctor’s discretion, she has to approve it. Sometimes they will tell you it’s unnecessary, if they feel like it’s extremely blatantly obvious what your diagnosis is. But sometimes they’ll agree and be on board and say “Okay sure, we can do that just as an extra precautionary measure!”

[u/Resetti_Surveillance]

Wow!! Thank you for sharing! Something like this never occurred to me. Wishing you the best with your treatment paths 🙏🏻

[u/Chelstrawberrymuffin → u/Resetti_Surveillance]

Thank you so much. Yeah, it never occurred to me either. I am totally new to all of this. I thought all my hair changes were just hormonal and normal, bc I heard a lot of people say their hair color or texture changes on T. But in my case, the hair texture change was from androgenic alopecia bc my hair follicles shrank and are too weak to produce my natural strong curl pattern. So I just have weak limp waves rn. 😭😭😭 I hope I get my curls back.