Can Anyone Offer Advice Or Help For A Woman With High Androgens?

[Bluelilac]

First off, I'm sorry for posting on the men’s board, but I am desperate for help and advice from anyone who can provide it! I also feel like the men’s boards are more active than the women’s. My story is below, apologies for the length. Thank you so much for reading and your help! Also just want to say I’m so sorry for everyone having to go through hair loss, it is devastating.

I am 30 years old and used to have (always had since I was a child) long full thick hair with thick bangs. I always used to shed a lot of hair and when I would ask doctors or hairstylists about it I was told it was because my hair was so long and it just seemed like excessive shedding. The hairs I used to shed were thick and healthy looking. Over the years I felt like my hair was thinning but there were no balding areas and I thought it was in my head. Eventually around 2015-16 I noticed the sides of my head became very thin and see through. Seemingly no changes elsewhere or to my part. I questioned doctors and was also having issues with inability to lose weight, mood issues and hot flashes. I thought I was going through early perimenopause. My concerns were dismissed. I begged for hormones to be tested and my total testosterone and prolactin were found to be high. My dumb gyno ignored my testosterone I’m assuming because I wasn’t overweight for my height, no acne or body/facial hair and regular cycles. I wasted a year with an endo trying to sort out my prolactin just to eventually find out I had pcos. The only way I got diagnosed was because I suddenly developed physical signs of it, had a massive headache one night and woke up with my hair shedding crazy amounts. Since then I have lost more than 50% of my hair, way more probably than that. The temples and sides are receded and so thin and bald in spots. I have diffuse hair loss all over my head now. All my strands seem so thin and fine, I think every hair on my head is miniaturized. I started getting increased peach fuzz on my face and body too, which I never had. Ultrasound confirmed cystic ovaries.

I cannot cope or accept this. I started low androgen birth control, 100mg Spironolactone, and metformin because I found out I’m prediabetic and insulin resistant because apparently doctors didn’t think anything was wrong with me for years because I wasn’t obese! I’m furious. I was told for years I needed psychiatric help and was a hypochondriac with an eating disorder.

I just want my hair back. Saw a hair specialist and he told me to keep using my meds and start to rogaine on my front hair line. He thinks the diffuse looks can grow back but he doesn’t realize how much I lost and how fast and how thin ALL my hair strands are now. They used to be thick and a rich brown color. They are weak and pathetic and light in color now.

Is there any hope for me? I was only given 50mg of spironolactone but started taking 100mg because doctors wont take my case seriously. I know I need minimum 200 mg for best possible results.

Anyone have any advice? Since 3 weeks on the birth control I was able to lose the weight my body was holding on to and am now back to my usual 110 lbs. I started working with a personal trainer to strength train and eat low carb/low glycemic. Cut out all sugar and white flour. Don’t drink or smoke. I think my hair loss is too advanced to be reversed.

Also scared to use rogaine because if the chance of growing body/facial hair especially having pcos. Right now I only have peach fuzz and I want to keep it that way. If I lose my hair and grow a beard, I’ll just die. I went almost 30 years as a normal seemingly healthy girly type girl. Now I feel like I’m turning into a man. Any advice would be greatly appreciated!

Pics if my hair attached. Also a pic of my old hair attached. Was still shedding here but thickness was still there. You can see I had lots of hair on my left and right shoulders and I had more in the back you can’t see. Another pic shows all the hair I have left now when pulled together.

 

[itsjustsimon]

@Georgie may help you

 

[Georgie]

Giirrrlll welcome to the club. I am so so sorry that this is happening to you.

Let me make this concise.

Women’s hairloss is very hard to treat. Often non-responsive. I’m sorry but if this is true androgenetic alopecia, you’re in for a fight.

So firstly 50mg spironolactone won’t do sh*t. You need a minimum of 100mg just to stop shedding, 200mg to POTENTIALLY regrow hair. Metformin does help some ladies with pcos hair loss but be aware that it can also exacerbate the issue.

Secondly, get onto Soul Cysters. It’s a forum for PCOS, and it’s sooo helpful! I have found that most of the women have good success using flutamide for hairloss, usually around 250mg. It’s a much harder drug than spironolactone but if that doesn’t work for you, it’s another good option.

You may find that you really do need a grown stimulant like minoxidil. It sucks, and it will make your head shed worse than ever when you start using it, but it is also sometimes necessary when your hair simply won’t grow back. I tried a hair friendly pill and spironolactone without any luck which is why I started using minoxidil in 2015. My hairloss was also very aggressive (still is - nothing really works), and I lost hair everywhere, all over my body, but worst was my whole hairline which receded like almost 2 inches. The whole thing, nape and all.

My advice is start your treatment NOW. Do not wait, don’t screw around with natural treatments, hairloss shampoos and all that sh*t. Find a good antiandrogen that works for you, get your shedding under control, then look at how you can regrow. There are so many resources available to you here, and I am so deep into science with this sh*t that I can help you with pretty much anything you are wondering about.

Good luck

 

[Bluelilac]

Giirrrlll welcome to the club. I am so so sorry that this is happening to you.

Let me make this concise.

Women’s hairloss is very hard to treat. Often non-responsive. I’m sorry but if this is true androgenetic alopecia, you’re in for a fight.

So firstly 50mg spironolactone won’t do sh*t. You need a minimum of 100mg just to stop shedding, 200mg to POTENTIALLY regrow hair. Metformin does help some ladies with pcos hair loss but be aware that it can also exacerbate the issue.

Secondly, get onto Soul Cysters. It’s a forum for PCOS, and it’s sooo helpful! I have found that most of the women have good success using flutamide for hairloss, usually around 250mg. It’s a much harder drug than spironolactone but if that doesn’t work for you, it’s another good option.

You may find that you really do need a grown stimulant like minoxidil. It sucks, and it will make your head shed worse than ever when you start using it, but it is also sometimes necessary when your hair simply won’t grow back. I tried a hair friendly pill and spironolactone without any luck which is why I started using minoxidil in 2015. My hairloss was also very aggressive (still is - nothing really works), and I lost hair everywhere, all over my body, but worst was my whole hairline which receded like almost 2 inches. The whole thing, nape and all.

My advice is start your treatment NOW. Do not wait, don’t screw around with natural treatments, hairloss shampoos and all that sh*t. Find a good antiandrogen that works for you, get your shedding under control, then look at how you can regrow. There are so many resources available to you here, and I am so deep into science with this sh*t that I can help you with pretty much anything you are wondering about.

Good luck

Thanks for the reply! Do you have pcos or just hair loss from other causes?

I signed up to the forum soulcysters, thanks! I’ve been taking 100mg of Spironolactone, but only started 3 weeks ago. I know I need to get to 200mg but my dr originally wanted to only give 50! So I have to wait before they bump me up to either 150 or 200. So far I’ve had no side effects on the 100mg.

They tell me it takes months to see any changes from the spironolactone, if not a year. I’m worried to wait that long before bailing on it and trying something else like Flutamide. How long do you think I should give the spironolactone once I’m at 200?

I know I really should just use the rogaine but I’m terrified it’s going to increase my body hair or give me a thick manly beard. I don’t want to bald and have stubble. Did you experience hair growth anywhere else than your head? Also I read it can deplete collagen, do you have this issue?

How is your hair now? You said your loss is still aggressive. Have you have any improvements or just been slowing it down?

Thanks!

 

[countjulian]

Thanks for the reply! Do you have pcos or just hair loss from other causes?

I signed up to the forum soulcysters, thanks! I’ve been taking 100mg of Spironolactone, but only started 3 weeks ago. I know I need to get to 200mg but my dr originally wanted to only give 50! So I have to wait before they bump me up to either 150 or 200. So far I’ve had no side effects on the 100mg.

They tell me it takes months to see any changes from the spironolactone, if not a year. I’m worried to wait that long before bailing on it and trying something else like Flutamide. How long do you think I should give the spironolactone once I’m at 200?

I know I really should just use the rogaine but I’m terrified it’s going to increase my body hair or give me a thick manly beard. I don’t want to bald and have stubble. Did you experience hair growth anywhere else than your head? Also I read it can deplete collagen, do you have this issue?

How is your hair now? You said your loss is still aggressive. Have you have any improvements or just been slowing it down?

Thanks!

Rogaine won't do that topically, you might see a minor increase but nothing major. Get on it, make sure it's 5%, immediately. You should also get on prescription strength two percent ketacozonol (brand name Nizoral) shampoo and start applying rosemary oil topically. Also look into dermarolling/microwounding for hair loss. As @Georgie said though, the main thing is to get you onto a good anti-androgen, and fast. You don't have to worry about losing the ability to have an erection or gaining excess breast tissue, so as Georgie said there's no harm in going straight for the big guns ( in addition to flutamide ask about dutasteride (brand name Avodart)).
. Good luck.

 

[Georgie]

Thanks for the reply! Do you have pcos or just hair loss from other causes?

I signed up to the forum soulcysters, thanks! I’ve been taking 100mg of Spironolactone, but only started 3 weeks ago. I know I need to get to 200mg but my dr originally wanted to only give 50! So I have to wait before they bump me up to either 150 or 200. So far I’ve had no side effects on the 100mg.

They tell me it takes months to see any changes from the spironolactone, if not a year. I’m worried to wait that long before bailing on it and trying something else like Flutamide. How long do you think I should give the spironolactone once I’m at 200?

I know I really should just use the rogaine but I’m terrified it’s going to increase my body hair or give me a thick manly beard. I don’t want to bald and have stubble. Did you experience hair growth anywhere else than your head? Also I read it can deplete collagen, do you have this issue?

How is your hair now? You said your loss is still aggressive. Have you have any improvements or just been slowing it down?

Thanks!

Look I took spironolactone for 9 months and in that time my hair only got worse. I think of things don’t at least stabilise after a few months, it’s time to look elsewhere. That’s just my advice.

I would try romaine last. Seriously. Once you’re in it, that’s it. Done. That’s unless it does nothing for you because your body can’t metabolise the active ingredients into a sulfate in order for it to produce hair.
Yes it messes with your skin, quite a lot, but for some of us we have no other option.

My hair is bad. I have tried almost everything there is to try without success. I take oral minoxidil because it sporadically does regrow some hair for me but it’s not enough to counter the loss. I’ve tried all manner of anti androgens and it has done nothing to halt miniturisation or shedding. I have a complex issue so it just makes navigating things difficult, because I don’t have many references to go off that are similar to my case.
I basically went through menopause at 21 (2014), and I’ve got a bunch of HPA axis issues. My hairloss pattern is odd. My body hair also began to thin and fall out, and my scalp hairloss pattern is retrograde (entire hairline circunference hairloss) and diffuse female pattern also.
It’s a b**ch.

What I know for women is that androgen receptor blockers like spironolactone, flutamide, cuproterone acetate, bicalutamide seem to perform better than your 5-alpha reductase inhibitors like finasteride and dutasteride, and women seem to also respond better to growth stimulants. PRP also I find works better for women. If you have the cash, Prp could be an alternative to minoxidil for you.

 

[Georgie]

Oh also, if you want to get on thme experimental bandwagon, you could try topical equol. You can buy it through alibaba, and mix it with ethanol, dmso, distilled water. Given the female results from the Brotzu lotion, i think it’s at least worth a try for us. Equol basically neutralises DHT, and it a natural sort of alternative. There are threads about it here that you could pursue if you’re interested.

 

[Cue Bald]

honestly your hair looks fine to me, but then i am used to looking at Norwood 3 - Norwood 6's on these boards.

 

[Georgie]

honestly your hair looks fine to me, but then i am used to looking at Norwood 3 - Norwood 6's on these boards.

Ffs men commenting of female hairloss. She clearly does not have normal female hair. Her recession is quite evident, and the sides of her head are unnaturally thin (sorry love, I’m just being real). She needs people to tell how how it is, not say “it’s fine. You’re fine”.

 

[Bluelilac]

Ffs men commenting of female hairloss. She clearly does not have normal female hair. Her recession is quite evident, and the sides of her head are unnaturally thin (sorry love, I’m just being real). She needs people to tell how how it is, not say “it’s fine. You’re fine”.

No offense taken! My hair is BAD. I lost soo much hair and had to listen to doctors tell me I was crazy and my hair looked fine for two years before finally getting diagnosed with pcos. No one thought I had pcos because I was thin and had no major signs of it other than my hair issues that doctors refused to see. Now it’s been sooo long without treatment that I’ve turned insulin resistant and pre-diabetic and my hair is a mess and is getting worse every day. The bad state in which it looks now is pretty recent. I did get the flu in January and had a 103 fever, come March it was falling out like never before. Derm thought Telogen Effluvium and Androgenetic Alopecia possible. Before the massive shed started in March, I knew my hair was thinner but it didn’t look like it was receding. It looked normal but just felt thin to me. Now it’s horrible. I saw a hair specialist who basically said my hair wasn’t that bad yet, same with my endo who tried to start me with only 50mg spironolactone until I pushed for a higher dose. It only doesn’t look that bad to men because my hair is long and I can cover up the thinning. The back is starting to thin now as well. I’m getting a weird loss pattern. It sucks. Many women on pcos boards have commented that mine doesn’t look that bad either but it’s pretty bad to me, I knew it seemed off years ago and I’m kicking myself for not pushing doctors to test my hormones more.

 

[Bluelilac]

Ffs men commenting of female hairloss. She clearly does not have normal female hair. Her recession is quite evident, and the sides of her head are unnaturally thin (sorry love, I’m just being real). She needs people to tell how how it is, not say “it’s fine. You’re fine”.

Hey, I was just thinking when you mentioned you have HPA axis issues. Do you have any answers about the specific cause from an endo? So I was told I had pcos but kept pushing for more answers since I’m 30 and never showed signs. My health kept declining since this post and I’m working now with an endo that specializes in pituitary and adrenals tumors and diseases. I keep getting high cortisol results. Midnight saliva 3x the amount, mildly high 24 hour urines. I’m being given the full workup for cushing’s but I lost tons of weight so it’s bizarre. Do you have high cortisol?

 

[Retinoid]

Hey, I was just thinking when you mentioned you have HPA axis issues. Do you have any answers about the specific cause from an endo? So I was told I had pcos but kept pushing for more answers since I’m 30 and never showed signs. My health kept declining since this post and I’m working now with an endo that specializes in pituitary and adrenals tumors and diseases. I keep getting high cortisol results. Midnight saliva 3x the amount, mildly high 24 hour urines. I’m being given the full workup for cushing’s but I lost tons of weight so it’s bizarre. Do you have high cortisol?

Georgie left the board. One thing that would be interesting is if you could post your lab results (Testosterone, DHT, fasting glucose, thyroid panel (TSH, free t3 and t4), estrogen levels (estradiol, estriol, estrone), progesterone, LH, FSH, ACTH, Cortisol, Iron, Vitamin D). Cushings usually will manifest in other physical ways and if you do not have them you probably do not have Cushings. The high cortisol could be caused by your other issues going on.

While I am sure to you and Georgie (who also did not have severe hair loss) think your hair looks bad, you should realize most people, including probably everyone on this board, would not notice that you have hair loss. This does not mean you do not, it just means you should keep it in perspective and be thankful you are catching it early enough where it is not cosmetically noticeable to the general public.

For women hair loss is usually caused by a lot of different things. For men, it is usually heavily dependent on DHT and increased inflammation. That is why women's hair loss is less successful because there are usually multiple causes.

 

[hemingway_the_mercenary]

@Bluelilac you should get on topical darolutamide in kb and also add some topical 17b estradiol in addition to whatever you take systemically

I also suggest you completely leave spironolactone and try oral bicalutamide. It has a very safe side effect profile and its not a diuretic. its a horrible idea to use a diuretic like spironolactone for long periods of time

 

[Bluelilac]

So my other weird hormonal symptoms all started exploding. I continued to lose clumps of hair now. The pics I posted months back was nothing compared to now. I wish I still had that. Now my night sweats are drenching, I only get REM stages of sleep, my skin is becoming thin and crepey. Started getting hypoglycemia attacks that can’t be regulated, massive anxiety and depression and mood swings, lots tons of weight and apparently muscle mass. My thighs are like twigs and I can barely walk. I get horrible muscle and bone pain intermittently. No dr had been able to figure it out but now I’m with a specialist a MSKCC and testing for cushing’s. I’m living a nightmare. I have constant tachycardia, found out I may have early stage osteoporosis. Been in and out of the ER the last couple months. I’m a mess. My hair doesn’t even concern me anymore sadly, I just remembered Georgie mentioned having an hpa axis issue so was curious what it was. I did more salivary tests, blood tests and a urine test today for cortisol. Hoping to get some answers and help soon from my dr.

 

[hemingway_the_mercenary]

well i hope your off spironolactone as it can be causing alot of that

 

[Retinoid]

So my other weird hormonal symptoms all started exploding. I continued to lose clumps of hair now. The pics I posted months back was nothing compared to now. I wish I still had that. Now my night sweats are drenching, I only get REM stages of sleep, my skin is becoming thin and crepey. Started getting hypoglycemia attacks that can’t be regulated, massive anxiety and depression and mood swings, lots tons of weight and apparently muscle mass. My thighs are like twigs and I can barely walk. I get horrible muscle and bone pain intermittently. No dr had been able to figure it out but now I’m with a specialist a MSKCC and testing for cushing’s. I’m living a nightmare. I have constant tachycardia, found out I may have early stage osteoporosis. Been in and out of the ER the last couple months. I’m a mess. My hair doesn’t even concern me anymore sadly, I just remembered Georgie mentioned having an hpa axis issue so was curious what it was. I did more salivary tests, blood tests and a urine test today for cortisol. Hoping to get some answers and help soon from my dr.

That is terrible...it seems like your body is in crisis and I hope you figure it out. Please let us know when you find out what the culprit is.

 

[Sliceofbread]

So my other weird hormonal symptoms all started exploding. I continued to lose clumps of hair now. The pics I posted months back was nothing compared to now. I wish I still had that. Now my night sweats are drenching, I only get REM stages of sleep, my skin is becoming thin and crepey. Started getting hypoglycemia attacks that can’t be regulated, massive anxiety and depression and mood swings, lots tons of weight and apparently muscle mass. My thighs are like twigs and I can barely walk. I get horrible muscle and bone pain intermittently. No dr had been able to figure it out but now I’m with a specialist a MSKCC and testing for cushing’s. I’m living a nightmare. I have constant tachycardia, found out I may have early stage osteoporosis. Been in and out of the ER the last couple months. I’m a mess. My hair doesn’t even concern me anymore sadly, I just remembered Georgie mentioned having an hpa axis issue so was curious what it was. I did more salivary tests, blood tests and a urine test today for cortisol. Hoping to get some answers and help soon from my dr.

I hate to be an alarmist but this sounds suspiciously like cancer to me.... please seek medical help immediately

 

[Bluelilac]

I hate to be an alarmist but this sounds suspiciously like cancer to me.... please seek medical help immediately

My drs claim all my tests and I’ve had lots, show no signs of cancer. I’ve had a pituitary MRI and abdominal ct scan both normal. S chest X-ray that was normal as well. My endo at Sloan Kettering said 50% of pituitary microadenomas (benign) don’t show on mri bc they are so tiny. I’m still testing for cortisol, if they remain high I’ll need an ipss to determine if it is coming from the pituitary or elsewhere. I worry it’s cancer too but my last ACTH was 16.5 and typically if it’s caused by an ectopic malignancy ACTH is sky high, usually. I’m still very worried.

 

[Sliceofbread]

My drs claim all my tests and I’ve had lots, show no signs of cancer. I’ve had a pituitary MRI and abdominal ct scan both normal. S chest X-ray that was normal as well. My endo at Sloan Kettering said 50% of pituitary microadenomas (benign) don’t show on mri bc they are so tiny. I’m still testing for cortisol, if they remain high I’ll need an ipss to determine if it is coming from the pituitary or elsewhere. I worry it’s cancer too but my last ACTH was 16.5 and typically if it’s caused by an ectopic malignancy ACTH is sky high, usually. I’m still very worried.

Have you had adrenal imaging?

 

[Bluelilac]

Have you had adrenal imaging?

Yep, the report was normal. And if it were adrenal cancer my testosterone and DHEA-s would be higher and my ACTH would be <5. It was 16.5 last time it was checked. I worry about an ACTH secreting ectopic tumor. I’m waiting for more test results. I think my dr thinks if it is cushings it’s pituitary. But I don’t understand why I lost weight. However I still am like all flab, I used to have a flat stomach but even at this low weight it’s flabby and bloated like. This is all so confusing. I have no idea what’s happening to me.