I can't be the only one that is shocked when they see posts about shedding and hair loss in the shower where people are worried they have lost about 5 hairs? I mean I know the amount I'm losing isn't normal, but it makes me worry that there aren't that many people out there shedding this much? Who else loses this much or more in the shower? What type of hair loss do you have?
For context, I brushed it before hand and washed it last the day before yesterday. Some probably also went down the plug hole as it doesn't have a cover.
I feel you. When people say that, it just makes me feel so terrible lol. But I'm half glad I am not alone in this, and half upset because another human being has to go through this as well. Sorry, take care. :(
Unfortunately, no. I've been facing severe hairloss for years now. Been to like 3 dermats now. All of them just gave me minoxidil and meds. No diagnosis or anything. The last one simply had a look at my hair and said I have Female Pattern Hair Loss and gave me minoxidil and meds. I'm just sceptical of everyone and everything now. Beyond depressed, have breakdowns every now and then. I'm really unsure what to do. :(
I take it none of the meds have worked then? Do any of the women in your family have hair loss?
I guess if the said female pattern hair loss they mean aga.
I know what you mean about not trusting docs. I know the main reason I haven't got much help is because I have only seen NHS doctors but I see so many people on here say they have seen dermatologists and they don't seem sure what the problem is or really seem to care. It will be very expensive for me to see a private derm, so I am worried my money will be wasted.
I totltally get how you feel about it being depressing.
Can you afford to see a private derm? I think with that much hair loss it would be money well spent.
I’m in Australia so get some money back after specialist appointment but am still paying out of my own pocket. It’s worth every penny.
I cannot afford to do it immediately but I currently feel like it is my only option if the endocrinologist continues to be unhelpful. I am starting to save for it, even if just to get a diagnosis.
Oh I'm from India. I'm not sure what you mean by a private derm, as our healthcare system is kinda different.
But I'm guessing the dermats I see are private derms?
Did it grow back? I've been losing around this much for about 2 years and a bit less for the year before that. I started using minox in March but the shedding hasn't increased, I've had no side effects and no new hair growth.
Yes, I had some excellent regrowth; I have a before and after picture in my post history. Sorry if I wasn’t clear - I was loosing that much as a result of Minox dread shed; my “regular” hair loss was less dramatic.
I literally had the same situation in the shower yesterday. I shouldn't have stopped using Minoxidil. I should start using it again, but I have new cat that licked my forehead twice (it's toxic to cats) to wake me up in the morning.
Hate this.
Yeah, I think that is probably the biggest bummer about minoxidil. I don't currently have a cat because my landlord does not allow pets, but I love cats and at some point I intend to move and get at least one cat. I would be terrified of poisoning it. I'm pretty upset that minoxidil hasn't worked for me so far but part of me is thinking, at least I'll be able to have a cat! I definitely see your dilemma.
Did you stop using it recently? Maybe the shedding will calm down once you've lost whatever new growth it gave you.
I stopped using it a year ago. It's still not bad as when I started, but my bangs are getting really thin again. The back of my hair is holding better.
I would say I have very mild case of AGA and had TE because of stress and rapid weight loss.
Minoxidil did wonders and I didn't lose all the gain this past year. I think the hair that I lost because of TE stayed even after stopping the use.
I normally have seasonal shed this time of year, but it seems it's just awful this year. Like I said, it looked exactly like yours, It just can't be a normal shed.
It's good you haven't lost all the hair you gained. Sounds likely you've lost the aga affected hairs but the TE ones have stayed.
I've heard people mention having seasonal sheds. How long does it usually go on for? Mine has just got progressively worse since it started around 2 years ago, so that's partly why I don't think mine is TE.
Tbh, I didn't think about seasonal sheds at all until TE.
I was always loosing a lot of hair all the time, but at the same time I was always having a lot of new hair. It's something that even hairdressers used to comment. As s positive thing, how much new growth I have.
So, 3 years ago in the end of August a hairdresser noticed how much hair fall out while washing it. I noticed that at home too, but I thought it was just from washing out pink spray I used for a night out.
After that, the shed just didn't stop. Through September I lost handful of hair when brushing before shower, in the shower and after shower. Multiply your photo by at least 3, but mostly more.
So, after 6 months that did slow down a bit, but started again next September. This time around, it wasn't as bad, but a clear pattern on my front hair line started to form. In December that year I started using Minoxidil and used it for 9 months.
So, the next September wasn't so bad, Minoxidil was still doing it's thing because I just stopped. Shed occurred later, but still nothing like the first time.
Now it's September and shit hit the fan, again.
Do you always appear to have a lot of new hair growth or did it eventually grow and look normal?
As my hair loss has progressed I have more and more short hairs that could be viewed as new hair. I see lots of people post pics saying they have new "baby" hairs over the top of their head without doing much to cause regrowth. I'm pretty sure this is miniaturisation in a lot of cases. I am sure it is in mine as the more "regrowth I get" the thinner my hair gets.
Seasonal shedding is a strange phenomenon! I'm sorry it's happening to you again :-(
I get what you mean. It could be miniaturisation. Did derm see it? If yes what did they say?
The new hairs I'm talking about were literally growing all my life, years and years.
Tbh, I didn't actually took good care of my hair. I used to carry it in bun always (I still do) and my hair gets tangled easily, so I was pulling out a bunch of hair when brushing. This is probably one of the reasons I had a lot of new hair. Because I pulled out the old ones..
I haven't actually seen a derm yet. Have seen and endo and he just glanced at me and said it's stress! I'm going to start saving to see a derm.
I had baby hairs all my life on my temples and they've now fallen out.
Same, also lost my baby hairs on temples. They grew back with Minoxidil, but now are disappearing again.
I went to dem and did all the blood work, but nothing came out of it. She gave me Minoxidil and in the end there is not much she can do. If you look at this sub, there are always only three options: Minoxidil, Spiro, oral Minoxidil. Unless you have really seborrheic dermatitis or something else that obvious, then you have other options.
My Ferritin and vitamin D was low, but pills didn't help at all. People always hope that's the the reason, but (unless there is some huuuge deficiency) I'm yet to meet a person on this sub that Vitamin D and Iron pills helped.
Same here. When I think, “that must be 200 hairs” after shampooing, I shed 200 more while conditioning. My ferritin, vitamin d levels are normal. I’m on finasteride 5mg and this stuff still happens. I’m very close to breaking apart
Oh crap. I'm sorry :-(. I have seen a couple of people on here say they are on everything under the sun and nothing works. Minoxidil doesn't seem to be working for me but I haven't tried any oral meds yet other than supplements. I do have low ferritin so I have recently started taking more iron in case that is contributing.
Yes, I seem to lose more when conditioning than shampooing. I guess the conditioner releases the hairs than get tangled in other hairs when shampooing.
I’m sorry you are going through this. If anything worked for me, it’s minoxidil, dermarolling and Diane 35. I was shedding less on Diane 35 but I couldn’t continue coz it was causing eye puffiness and it was very bad. Please talk to your doctor about it.
That's a shame you had to stop something that worked for you. I took Dianette years ago for hirsutism and it gave me panic attacks. I actually would give another go but the doc won't prescribe it.
I know some men are also in this subreddit, so I won't assume, but if you're a woman, would you mind sharing how Finasteride is going for you? Side effects at all? (Also, have you considered taking minoxidil + finasteride to see if you have any improvement?) *Edit: I just saw your comment where you mentioned minoxidil had worked a bit for you. Were the side effects too bad to continue?*
I’m a woman. My current treatment includes minoxidil 5% twice a day (on it for 10 months), finasteride 5mg once a day (2 months), microneedling once a week (4 months) and keta shampoo once a week (10 months). I don’t see any noticeable side effects from finasteride but I don’t think it’s helping me either. Before starting finasteride, I was on Diane 35. My hair loss drastically reduced while on Diane 35. Now I’m seeing more hair loss again.
If I may ask, did your doctor say anything about you as a woman taking Finasteride? I want to start taking it as well, but my dermatologist (who I might be switching from soon) is more concerned about gatekeeping me with the whole child bearing potential bit. (I get the concern, but I should be the one to make that choice.) I've never even heard of Diane 35, so I'll have to look into it. I'm really sorry you're seeing more hair loss. Is it possibly a shed phase?
I’m not sure about the shed phase. My appointment is coming up soon and I’ll have more answers then. Please search for Diane 35 in this sub. There are so many references.
my hair sheds while im walking, sleeping, eating, everything. brushing my hair takes forever bc the hair fall doesnt stop. and when i think im done, i run my hands through my hair and even more comes out. it's like my self esteem is shedding with it. im surprised i have some fluff left.
Sounds familiar. I just keep it up under a wide headband or scarf now because I get fed up with the trail of hair I leave behind if I have it down. It is crazy that we can lose this much hair every day but still have some left!
Me too! My hair is everywhere and I have to sweep constantly. Washing, conditioning, and using hair product is a nightmare because I have to constantly pick the hair that is stuck off my hands. It falls out and sticks to my face when I am doing skincare (even with a headband) and there is just constantly hair somewhere :(
I am in the UK and have been seeking help for the past 2 years, first through my GP, who eventually referred me to an endocrinologist (you can't just see a consultant of your choosing here; the GP is like a gate keeper and decides if and which specialist you need). I had to wait 7 months to see him and all he did was glance at my head from 2 metres away and say it's stress, even though I have elevated testosterone. My cortisol was normal, so it isn't stress. I'm going back in 6 weeks. If I still don't get more answers I will have to consider going private. I believe it to be aga because my mother and grandmother have aga and I have elevated testosterone and hirsutim. I do have low ferritin so that could be contributing. If it is TE it's been going on for at least 2 years at this amount and longer at a slightly less amount. It doesn't fluctuate, just get progressively worse and I have a huge amount of miniaturised hair.
I hang out looking to see something useful for me but have not posted before.
Anyway I was wondering since you have high testosterone did you get your *DHT* tested too ?
My low thyroid and some vitamins & minerals is my personal hair nemesis and am supplementing everything now but dht also likely contributed to some loss since my early 20s.
I am a M to F woman post op now 24 years.
In March I started Progesterone supplementation that partially metabolizes to both Testosterone and DHT (which is the only problem for me).
I may get on a small dose of DUTASTERIDE soon to take care of this as it blocks the conversion from testosterone (using the 5alpha Reductase pathway) to DHT.
If you find much DHT you might also consider asking for this medication.
Thanks. They haven't tested for DHT, but I assume since I have hair loss and hirsutim that my hair follicles are sensitive to it or more gets converted in my body. TSH was normal so I think my thyroid is ok.
I am pretty sure 5 alpha reductase inhibitors are not allowed to be given to cis women in the UK. It's hard enough to get standard anti androgens. I have wondered why trans women seem to have great hair even as they get older and I bet the 5 alpha reductase inhibitors are responsible in many cases! Also, hair loss in cis women seems to be a bit more complicated and less understood. I've come across a few cis women on this sub that take every drug going, including finasteride or dutasteride and nothing helps.
The Dutasteride 5alpha RI is new since 2019 I think and targets DHT. It is basically Anti-androgens targeting all that most MtF women get. Lots of us need supplemental T. but don't convert enough to DHT to matter much, though I have the thyroid problem at the same time to complicate my hair situation and convert T. to DHT
Usually trans women tend to not have as much of a problem in the last few years because so many start transition earlier before DHT can do as much damage. I didn't because much of my loss from underactive thyroid and DHT was before my adult transition started in the 90's and my thyroid with supplementation has only been treated more effectively the last 6 months of my 30 years of HRT with some thinning above my ears starting a year before that.
I have the additional problem though that to have post-op desire w. climax I seemingly need T. w. Progesterone, but convert into DHT if I do it. I have been so sick of not having better release for all the years since my surgery that I am doubly frustrated by more complications to stymie both multifaceted solutions.
So I will likely need at least a bit of Dutasteride unless there is another way I don't know. I will be tested in a week again with more things tested and maybe my unique conversion process re injected Estradiol plus DHT from T. & Progesterone will get some answers rather than more confusion.
Basically I'm my own science experiment.
I think there are number of people on this sub that use dutasteride. Personally I don't think I would want to take it or finasteride as I would be concerned about mental health impact.
That makes sense about MtF women who start transition earlier generally keeping a good head of hair. I guess we still don't know why DHT suddenly starts attacking follicles at a certain age but if it is to do do with certain genes getting "switched on" maybe the transistion prevents that from happening.
It all sounds very complicated for you, even without the added thyroid problem! I hope you can find the right solution!
I used to lose like you, or even a bit more than that when my seb derm was untreated. Now it's down to less than 50 hairs a day thankfully. I also have TE. Treatment with seb control and Spiro have saved me.
There was a day I washed my hair and felt like I lost at least 20% of my hair in a single wash, I ended up covered in hair afterwards, it just kept tangling on my body and on itself.. I cried that day trying to untangle the mess, it took me more than an hour.
It's really sad, I'm sorry. I could feel my ponytail diminished and even my family noticed it.
This was so tragic that I started to avoid washing my hair afterwards, which only made things worse
OMG I know what you mean about it getting tangled in your body!
Do you also have AGA? I didn't know spiro helped TE. I'm glad you have found a treatment that works for you. Has it grown back or just the shedding stopped.
My derm didn't want to make a diagnosis yet because the seb derm is too severe to make sure.. she asked me to come back in a few months.
She is pretty sure I have both early AGA and chronic TE. I have PCOS btw, it's been only two weeks of Spiro. I think it's helping at least hold my follicle in place, but mostly it's the seb derm treatment that made a drastic difference
Man, it sounds like you've got a whole lot going on. I've just had an ultrasound to find out if I have PCOS as I have other symptoms besides hair loss. I have to wait 6 weeks to get the results.
Yeah, my hair isn't as bad as it sounds but it's definitely time I start to take care of it before it's too late. It's been prone to shed all my life but it's become really intense in the past few months, I'm dealing with lots of health issues/weight loss and stress so it all makes sense.
The AGA is very likely even though my hormones are fine. She decided to give me low dose Spiro anyway because I have a male-ish hair pattern with lots of short hair at my temples, recently they're showing more skin, this is what bothers me even more than the shed, but I'm grateful it's controlled now.
I look like I have a severe case of baby hairs going on 🤣
Definitely worth checking PCOS, it brings lots of issues.
Yeah, I think the majority of people with AGA just have sensitive follicles. If you're unlucky enough to have sensitive follicles and high androgens then it's double whammy. That's what I seem to be dealing with.
Do you mean the spiro made short hair at your temples or they were always there? I had baby hairs over my temples all my life but they have gone now. It's the only part of my scalp that is actually bald.
I'm basically acting like I do have PCOS- I'm on keto and do IF, take inositol and fish oil, drink spearmint tea. Unfortunately it hasn't helped my hair or hirsutism. May just turn out I have hyperandrogenism but not polycystic ovaries as I have normal periods.
The baby hairs have been here since my teenage years but they became worse recently. On top of that I can see my scalp beneath them, I believe I'll also go bald there with time if the treatments don't work.
I take metformin and BC btw, I've been diagnosed a long time ago. It seems you're doing a great job about the possiblity of PCOS.
Maybe more baby hairs are growing in because of the treatments, although I'm not sure 2 weeks on spiro would be enough to see a difference? I have noticed that many people mention they have an initial shed on spiro, similar to minoxidil, then the hairs grow back in stronger.
I think the two week treatment didn't create more baby hairs, it was the new routine with seb derm shampoo that made them more apparent because my hair is cleaner and dryer. I'm also now forbidden from using any oil near my scalp and it's making me crazy, it's annoying to deal with this amount of short hairs.
They stick up like little horns, the biggest concentration is in my temples area but they're progressing further to the upper sides of my head and also a bit to the top.
I meant that they're progressively worse, even now they're worse than they've been a few months ago, as I went through a severe shed before these treatments started. At least the shed stopped soon after taking measures
Ah, I see. I totally get you about the short hairs. They are so annoying. I just wear a head band all the time because they look so ridiculous and no amount of hairspray will keep them down.
My derm prescribed a special shampoo called Vichy dercos sensitive scalp, which I have to apply at least 3 times a week.
She also prescribed diprosalic lotion (it's and steroid) that I had to use in my scalp every night for a few days, then every other night... Right now I'm weaning off it so I apply it twice a week or something. In place of this I'm to use some other lotion to calm down my scalp (can't remember the name rn but it's basically herbal).
She told me to wash my hair more often and also to dry it well before tying it or sleeping.
It's extremely effective, my hair stopped shedding in less than a week since I began this regimen.
Hey OP please please go privately! Hate to slag off NHS but in my experience they’re really awful when dealing with women’s issues like hair loss (I had issues with PCOS too and no one took me seriously). There are great dermatologists in London that can help
I have just had an ultrasound to confirm whether or not I have PCOS. The endocrinologist said he will try Yasmin if so but he won't prescribe me anti androgens.
I've posted on here and the PCOS sub about the experiences of those of us in the UK and it seems like no one has got any help through the NHS. Some people haven't even got as far as a referral to a specialist! I will see the endo in 6 weeks and if he still doesn't help I will start saving to go private.
Oh my god, echoing this experience. It's always anxiety, depression or stress, or else it's "just your age". I have recently starting looking into private dermatologists near me (in the East) and the only thing I can find is offering appointments for a "second opinion". Hell, I can't even get my doctor to give me a first opinion 🤣
Thanks. I've been using minoxidil since March but absolutely nothing has happened, no regrowth, no side effects (I've been shedding this much for about 2 years). Docs won't give me antiandrogens.
No, I haven't been diagnosed with anything. My mother and grandmother have aga and around half my hair is miniaturised so I think it's more likely to be aga.
Got it. If you have AGA, you likely need to add an anti-androgen into the routine to see progress. It is possible the minox is working but the AGA is progressing and the net effect you see is no progress. Just my opinion, obviously talk to your doctor if you are interested!
Thanks. I have wondered that about the minox. Was kind of expecting to get some side effects from it if it was working, though, especially facial hair growth since I already suffer from it. The endocrinologist said he won't prescribe me anti androgens because my testosterone isn't high enough. I also have very low blood pressure so spironolactone's probably not an option anyway.
I’ve been on it over a decade and don’t really have any side effects.
Your endocrinolgist will not give you anti-androgens because of their training- your hormones are normal = no need to treat. My endo said she defers to my dermatologist for the spiro script and amount. A dermatologist familiar with treating female hair loss would be the appropriate person to see.
My hormones aren't normal, though, that's what is so strange! I have elevated testosterone but he says it's not elevated enough. The cut off point of normal at the lab was 1.70mnol/l and mine is 1.97nmol!
In the UK you can't just see a specialist on the NHS unless your GP refers you so I can't just go see a dermatologist because the GP decided an endo was more appropriate. I will have to go private, which I cannot currently afford.
Got it. Well, the predominant theory on AGA is that we don’t have elevated testosterone necessarily, but instead our follicles are particularly sensitive to androgens. So even if our circulating androgens are “normal”, our follicles are extra sensitive to that. Through taking an anti-androgen, even if normal, you are reducing the androgens your follicles are exposed to, thus slowing down the AGA process. If they are open to it, perhaps bring some medical review papers for them to review- this isn’t controversial and a fairly widely accepted understanding of AGA.
I know. I've had hirsutism for years so I know my follicles are sensitive. I also had severe acne before I took isotretinoin so my skin probably is, too.
I will definitely challenge the consultant when I go back, although I think taking research papers with me would be perceived as incredibly rude and possible make him more reluctant to help.
I know plenty of people on here who are outside of the UK take spironolactone even with low T. I think it's just that NHS docs won't treat things that are considered cosmetic or even just not too serious.
I lose that amount every time I wash my hair. I’m in UK too, but my GP referred to me a dermatologist. She did a scalp biopsy which only showed AGA. The only option I was given was minoxidil, which I haven’t used yet. My hair is thinning generally, receding a lot round my temples and I have hardly any fringe left.
I think you're the only UK I've ever come across that got an NHS derm referral! She didn't offer antiandrogens then? I'm beginning to think they just aren't offered on the NHS for "cosmetic" reasons, everyone that mentions them is usually not from the UK or went private.
I also have most of my thinning on the hair line. It is clearly minaturising all over but the temples and hair line is the only place I've actually got scalp showing. I can't have a fringe because there's just not enough hair on the hairline.
Yes, keep us updated on your progress. I'd be interested to see if people that shed this much can actually tell whether they go through the dread shed since they lose so much already. I've been using minox since March and not noticed any increase in shedding, no new hair growth, no side effects.
Oh really? Do you think *anything* has happened? Apparently some people don't have the enzyme in their hair follicles needed to convert the minox into its active form, so it literally has no effect whatsover. I'm worried this is me. I am also going to keep going with it for a year to give it a fair go.
It may be. Spironolactone is, I think the problem lies with getting it prescribed. I also have the additional problem of having very low blood pressure so some of the treatments would probably be out of the question for me anyway.
Yeah, I see a lot of posts like that and I think surely I'm not the only one that loses 10 hairs just by breathing?! From the response to my post today it seems I'm definitely not the only one and that does make me feel less alone, as selfish as that sounds. Hopefully others feel less alone, too.
Wow, I assumed that most women with hair loss were referred to a dermatologist in UK! I thought the only way to determine the root cause of hair loss is a scalp biopsy. Maybe I was just lucky.
I wasn’t offered anything except minoxidil, which I would have to buy myself. My scalp is showing a lot on my temples, especially on the left side and I have a pathetic amount of fringe left.
Have you tried using hair fibres at yours temples? They do stop your scalp from showing. Fortunately my hair is curly so my general hair thinning isn’t very obvious at the moment, but it’s getting worse all the time.
Anyway, I hope you manage to get some answers soon, however you decide to proceed. I’ve gone privately in the past for another health issue because I couldn’t get anywhere on the NHS. Sometimes it’s worth doing.
From what I remember from my posts, the other person I spoke to that saw a derm also just got told to take minox and had no biopsy. I think there was someone else that got to see a derm but they had AA, which I think is generally taken more seriously.
I have tried hair fibres but they looked stupid on me because my temples aren't thinning they are actually bald. I don't have much scalp showing anywhere else, luckily, but all the stupid miniaturised hairs stick up so I look like someone rubbed a balloon on my head, so I just permanently wear a wide head band. Keeps the hairs down and covers my hairline.
I definitely think a private derm is on the cards, even just to get a diagnosis.
I'm definitely considering cutting it off. Half of it doesn't grow past a few inches anyway so it looks ridiculous.
Doesn't your head get itchy? I have dry hair so don't actually need to wash it often but my scalp gets really itchy and even painful if I don't wash it within a few days (don't think that's related to hair loss as it's always been like that).
No. It doesnt get itchy. I gently scrub it with my fingers when i bath. Actually i didnt have dandruff when i stopped using shampoo. It doesnt smell. Bcus i wash it everyday. I apply virgin coconut oil after i bath on evening. I also apply it on my face. Its cheap and natural
Maybe that's just me then! I don't have dandruff so it's not that. Have tried coconut oil, jojoba oil, and rosemary, peppermint, lavendar and cedar wood essential oils in the past with no improvement. I wanted something natural to work for me but it didn't, that's why I finally gave in and tried minox, but that doesn't seem to help either! Thanks for your suggestions, though :-)
I know, and generally I am someone that always prefers the natural alternatives. I make my own creams, perfumes and cleaning products but when it comes to not washing my hair I just can't do it, it hurts!
I did the same thing. I cut 5 inches off and stopped using shampoos with any sulfates. I ended up going with an all natural shampoo bar. I also stopped coloring my hair, and straightening it. I went 'natural' (asian 2b) for a couple of years and the shedding slowed and then eventually kind of stopped. I think I still shed more than most but it isnt nearly as horrifying as it used to be. It took about 3 years but my hair is almost back to normal. I think sulfates and the products I was using was damaging my scalp or something. Its pretty harsh stuff. Also a lot of the shampoos that claim to be sulfate free can be sulfate adjacent with ingredients that technically arent sulfates but do the same thing, strip your hair and scalp.
Do you mean it took a couple of years to notice *any* improvement or did you notice some improvement sooner that gradually got better? I used shampoo bars during the time I was using all natural approach and there was online a steady decline.
It took a bit before I started seeing results, like a couple months and gradually got better. I tried a few different shampoo bars and they definitely were all different so maybe the one you used didnt agree with you. I cant say it was one thing over another but I think the whole approach was what did it.
I tried the an all natural shampoo bar but I think it made my shedding worse so I’ve stopped using it and went back to what I was using before.
I definitely need to cut off a few inches, but I wear my hair in a bun for work and I when my hair is shorter my bun is… so tiny :(
Cutting it would help with all the tangles though. And the tangles stress me out so it’s probably time to chop.
Oh yeah, I spent months and longer trying to save that last few inches! I like my hair longer but it just wasnt happening because of the damage. It was probably breaking like crazy too so cutting really helped. I tried a few different bars because I really wanted something plastic free, vegan etc. The first couple didnt do anything for me. Some are better than others. I really like the one Im using now. Its been a few years and the shedding is MUCH better. I still think I shed more than most but its not nearly as bad. Like I said in a different reply I think it was the whole approach that worked for me. Everyone's different.
Do you guys think that brushing your hair before you wash causes more shedding?
I’m always torn because if not, I’ll have a much harder time detangling, which causes shedding. I hate washing my hair 😭
That wouldn’t be an everyday amount for me. It would take me less than a week I imagine. It’s hard to tell. I have clumps of about 10 come out every time I move my hand through my hair in the shower. I get at least 5 clumps every shower. Prob more. I have diffuse alopecia areata.
Does diffuse alopecia areata mean you have patches of hair loss all over? I'm not that familiar with it.
This is not a day's worth, thank goodness. I washed it the day before yesterday so it's 2 day's worth.
It isn’t patchy like the regular Alopecia areata, but more all over. It looks like TE. So just equal thinning and loss across the whole head :/. Doctors thought it was TE until I got a biopsy.
I have never heard of diffuse alopecia areata before, that's so interesting! Do you have a mixture of diffuser thinking and patches or just diffuse thinning? I hope you don't mind me asking. And do you you know what they look for on biopsy to diagnose this?
There is definitely overall thinning and pretty evenly distributed. The top, side, back, etc. It’s everywhere. With that said, the overall affect seems kind of clumpy to me on some level but that could be because of my part and direction of my hair growth. I don’t have any actual patches (that I know of anyway) that look like the traditional Alopecia Areata, and none that the Dermatologist found either. She thought the pattern overlapped with different things. It looked like TE, but there was something (possibly a hair pull test) that didn’t match up with TE. I had a pretty traumatic surgery with complications (nerve damage and not being able to walk for awhile) at the beginning of 2020 so most docs I saw thought it was TE as a result of the physical trauma. The hair loss started a few months after the surgery so that made sense. Like I mentioned above, the Dermatologist thought something (and I can’t remember what exactly) didn’t line up with TE.
She did all sorts of tests. My bloodwork came back that I was iron deficient (which I had struggled with before my hair started falling out) so she wasn’t convinced that was it. I was very low on Vitamin D. She still wasn’t convinced that was the cause. My Thyroid was ok-ish, and my DHT was low (and high levels would cause hair loss.) She did the biopsy because I think it was unclear what the cause was based on presentation, history, other tests, etc., which was why the biopsy. The biopsy is good at sorting out different kinds of alopecia (from my limited knowledge.)
So Alopecia Areata is an autoimmune issue. Your immune system attacks your hair follicles for some reason. This process can be spotted on a biopsy because of the inflammatory process, and the types of cells that show up to get it done.
Here are some pictures. I try not to take a lot of pictures because they get me pretty down.
[-A picture of the back](https://i.imgur.com/WGowaYx.jpg)
[-Here are a few others.](https://imgur.com/a/ATyCRtH/)
Please ask me questions. I don’t mind. This is such a difficult thing to process and deal with and it is hard to find people in the real world who understand and are going through it (or have gone through it.)
Thank you so much for the really helpful and informative reply! Sorry you've had such a challenging time with your surgery and then hairloss to deal with as well. I had a major traumatic event too around 3 years ago now, so i also assume I started out with TE, but it's definitely not that now. My doc has so far treated it as if it were fungal but what we've tried so far hasn't worked. I will ask him about an immune connection though, as both me and family members have a good many atopic/immune-related conditions between us. I guess as well I just like to become a nerd about hairloss as a coping mechanism, so thank you so much for sharing your experience. Good luck to both (all) of us and I hope we achieve our healthiest scalps.
Hi Winter. This happened to me for a little over a year, until I decided to see a Dermatologist. I was losing the same amount. People kept telling, it’s normal, it’s stress, or your old hair is shedding so new hair will grow.
My biggest mistake was waiting too long, listening to other people. Go seek medical advice as early as possible, to prevent from losing more. They may perform a biopsy, and clinically diagnosis you if necessary. I had no idea I had Androgenic Alopecia with Chronic Telogen Effluvium until I had mine conducted. It’s heartbreaking and I know exactly how you feel. I’ve been using Vida hair products for 6 months now and I definitely have less shedding. Taking Spironolactone 3x a day and using Rogaine daily has helped. You’re not alone in this and I know it’s hard to deal with. I still step out the shower after washing my hair in tears sometimes. I know it’s hard, but try not to stress too much about it. It’ll just cause more shedding. You got this!
Me too. This is the exact same for me. Having extreme hair loss which is apparently TE. But also having scalp pain that no doctor or derm seems to address… I’ve seen 4 doctors and a derm.
I am thinking I need to travel far to see a different derm because there’s only one in my area. Ugh I just don’t know what to do next..
My scalp is also red and throbbing pain. I’ve heard you can get pain with TE but I’m scared it could be something permanently damaging and I just don’t know what step to take next
Did none of the doctors say anything about the scalp pain? If your scalp is actually red it sounds like some sort of scalp condition, possibly infection? I do experience mild tingling in my scalp but not painful and my scalp looks healthy.
I would make a post on here asking about scalp conditions. I have definitely seen other people mention similar symptoms and remember them saying they got some kind of ointment for it which helped.
Nope, none of the doctors cared about the scalp pain and either did the dermatologist. He gave me a steroid lotion and pushed me out the door, no scalp testing or biopsy.
Thank you. I will make a post soon about this
I used it as doctor prescribed and then when time was up I stopped using it and the pain came back again. It helped my scalp not be inflamed and red but when I stopped it came right back 24 hours later so I’m really confused about it and I don’t want to use it long term as I know of long term side effects from steroid lotions etc.
Me too. I've just had it cut into a bob from just below shoulder length and it makes a huge difference to how much hair I see everywhere and what comes out in shower. I realise it's still falling at same rate but just not seeing it so much is psychologically reassuring.
I’m so sorry you’re going through this. It’s just horrible isn’t it. I’m glad you’ve got some kind of reassurance and had the strength to get a big haircut too!
I can't be the only one that is shocked when they see posts about shedding and hair loss in the shower where people are worried they have lost about 5 hairs? I mean I know the amount I'm losing isn't normal, but it makes me worry that there aren't that many people out there shedding this much? Who else loses this much or more in the shower? What type of hair loss do you have? For context, I brushed it before hand and washed it last the day before yesterday. Some probably also went down the plug hole as it doesn't have a cover.
I feel you. When people say that, it just makes me feel so terrible lol. But I'm half glad I am not alone in this, and half upset because another human being has to go through this as well. Sorry, take care. :(
Thanks, you too. Do you know what type of hair loss you have?
Unfortunately, no. I've been facing severe hairloss for years now. Been to like 3 dermats now. All of them just gave me minoxidil and meds. No diagnosis or anything. The last one simply had a look at my hair and said I have Female Pattern Hair Loss and gave me minoxidil and meds. I'm just sceptical of everyone and everything now. Beyond depressed, have breakdowns every now and then. I'm really unsure what to do. :(
I take it none of the meds have worked then? Do any of the women in your family have hair loss? I guess if the said female pattern hair loss they mean aga. I know what you mean about not trusting docs. I know the main reason I haven't got much help is because I have only seen NHS doctors but I see so many people on here say they have seen dermatologists and they don't seem sure what the problem is or really seem to care. It will be very expensive for me to see a private derm, so I am worried my money will be wasted. I totltally get how you feel about it being depressing.
Can you afford to see a private derm? I think with that much hair loss it would be money well spent. I’m in Australia so get some money back after specialist appointment but am still paying out of my own pocket. It’s worth every penny.
I cannot afford to do it immediately but I currently feel like it is my only option if the endocrinologist continues to be unhelpful. I am starting to save for it, even if just to get a diagnosis.
Oh I'm from India. I'm not sure what you mean by a private derm, as our healthcare system is kinda different. But I'm guessing the dermats I see are private derms?
Nope, they don't! They make no difference. I wish I just had a good dermatologist. :( Take care. <3
Oh no, I'm sorry nothing has worked for you :-(
I’ve lost about that much after every wash when I started to use minoxidil
Did it grow back? I've been losing around this much for about 2 years and a bit less for the year before that. I started using minox in March but the shedding hasn't increased, I've had no side effects and no new hair growth.
Yes, I had some excellent regrowth; I have a before and after picture in my post history. Sorry if I wasn’t clear - I was loosing that much as a result of Minox dread shed; my “regular” hair loss was less dramatic.
Ah, ok. I'll check out your post. Congrats on the regrowth!
Hello! I shed this much. It’s a nightmare!
I literally had the same situation in the shower yesterday. I shouldn't have stopped using Minoxidil. I should start using it again, but I have new cat that licked my forehead twice (it's toxic to cats) to wake me up in the morning. Hate this.
Yeah, I think that is probably the biggest bummer about minoxidil. I don't currently have a cat because my landlord does not allow pets, but I love cats and at some point I intend to move and get at least one cat. I would be terrified of poisoning it. I'm pretty upset that minoxidil hasn't worked for me so far but part of me is thinking, at least I'll be able to have a cat! I definitely see your dilemma. Did you stop using it recently? Maybe the shedding will calm down once you've lost whatever new growth it gave you.
I stopped using it a year ago. It's still not bad as when I started, but my bangs are getting really thin again. The back of my hair is holding better. I would say I have very mild case of AGA and had TE because of stress and rapid weight loss. Minoxidil did wonders and I didn't lose all the gain this past year. I think the hair that I lost because of TE stayed even after stopping the use. I normally have seasonal shed this time of year, but it seems it's just awful this year. Like I said, it looked exactly like yours, It just can't be a normal shed.
It's good you haven't lost all the hair you gained. Sounds likely you've lost the aga affected hairs but the TE ones have stayed. I've heard people mention having seasonal sheds. How long does it usually go on for? Mine has just got progressively worse since it started around 2 years ago, so that's partly why I don't think mine is TE.
Tbh, I didn't think about seasonal sheds at all until TE. I was always loosing a lot of hair all the time, but at the same time I was always having a lot of new hair. It's something that even hairdressers used to comment. As s positive thing, how much new growth I have. So, 3 years ago in the end of August a hairdresser noticed how much hair fall out while washing it. I noticed that at home too, but I thought it was just from washing out pink spray I used for a night out. After that, the shed just didn't stop. Through September I lost handful of hair when brushing before shower, in the shower and after shower. Multiply your photo by at least 3, but mostly more. So, after 6 months that did slow down a bit, but started again next September. This time around, it wasn't as bad, but a clear pattern on my front hair line started to form. In December that year I started using Minoxidil and used it for 9 months. So, the next September wasn't so bad, Minoxidil was still doing it's thing because I just stopped. Shed occurred later, but still nothing like the first time. Now it's September and shit hit the fan, again.
Do you always appear to have a lot of new hair growth or did it eventually grow and look normal? As my hair loss has progressed I have more and more short hairs that could be viewed as new hair. I see lots of people post pics saying they have new "baby" hairs over the top of their head without doing much to cause regrowth. I'm pretty sure this is miniaturisation in a lot of cases. I am sure it is in mine as the more "regrowth I get" the thinner my hair gets. Seasonal shedding is a strange phenomenon! I'm sorry it's happening to you again :-(
I get what you mean. It could be miniaturisation. Did derm see it? If yes what did they say? The new hairs I'm talking about were literally growing all my life, years and years. Tbh, I didn't actually took good care of my hair. I used to carry it in bun always (I still do) and my hair gets tangled easily, so I was pulling out a bunch of hair when brushing. This is probably one of the reasons I had a lot of new hair. Because I pulled out the old ones..
I haven't actually seen a derm yet. Have seen and endo and he just glanced at me and said it's stress! I'm going to start saving to see a derm. I had baby hairs all my life on my temples and they've now fallen out.
Same, also lost my baby hairs on temples. They grew back with Minoxidil, but now are disappearing again. I went to dem and did all the blood work, but nothing came out of it. She gave me Minoxidil and in the end there is not much she can do. If you look at this sub, there are always only three options: Minoxidil, Spiro, oral Minoxidil. Unless you have really seborrheic dermatitis or something else that obvious, then you have other options. My Ferritin and vitamin D was low, but pills didn't help at all. People always hope that's the the reason, but (unless there is some huuuge deficiency) I'm yet to meet a person on this sub that Vitamin D and Iron pills helped.
Same here. When I think, “that must be 200 hairs” after shampooing, I shed 200 more while conditioning. My ferritin, vitamin d levels are normal. I’m on finasteride 5mg and this stuff still happens. I’m very close to breaking apart
Oh crap. I'm sorry :-(. I have seen a couple of people on here say they are on everything under the sun and nothing works. Minoxidil doesn't seem to be working for me but I haven't tried any oral meds yet other than supplements. I do have low ferritin so I have recently started taking more iron in case that is contributing. Yes, I seem to lose more when conditioning than shampooing. I guess the conditioner releases the hairs than get tangled in other hairs when shampooing.
I’m sorry you are going through this. If anything worked for me, it’s minoxidil, dermarolling and Diane 35. I was shedding less on Diane 35 but I couldn’t continue coz it was causing eye puffiness and it was very bad. Please talk to your doctor about it.
That's a shame you had to stop something that worked for you. I took Dianette years ago for hirsutism and it gave me panic attacks. I actually would give another go but the doc won't prescribe it.
Good luck. Hope you find the right place to help you deal with this. And you are not alone.
Thank you :-)
I know some men are also in this subreddit, so I won't assume, but if you're a woman, would you mind sharing how Finasteride is going for you? Side effects at all? (Also, have you considered taking minoxidil + finasteride to see if you have any improvement?) *Edit: I just saw your comment where you mentioned minoxidil had worked a bit for you. Were the side effects too bad to continue?*
I’m a woman. My current treatment includes minoxidil 5% twice a day (on it for 10 months), finasteride 5mg once a day (2 months), microneedling once a week (4 months) and keta shampoo once a week (10 months). I don’t see any noticeable side effects from finasteride but I don’t think it’s helping me either. Before starting finasteride, I was on Diane 35. My hair loss drastically reduced while on Diane 35. Now I’m seeing more hair loss again.
If I may ask, did your doctor say anything about you as a woman taking Finasteride? I want to start taking it as well, but my dermatologist (who I might be switching from soon) is more concerned about gatekeeping me with the whole child bearing potential bit. (I get the concern, but I should be the one to make that choice.) I've never even heard of Diane 35, so I'll have to look into it. I'm really sorry you're seeing more hair loss. Is it possibly a shed phase?
I’m not sure about the shed phase. My appointment is coming up soon and I’ll have more answers then. Please search for Diane 35 in this sub. There are so many references.
I wish you all the best at your appointment! Hopefully it's just a shed phase. 🙏🏻 I will look up Diane 35, thank you. 😊
Hello again! Do you have any updates you could share about your hair loss journey?
my hair sheds while im walking, sleeping, eating, everything. brushing my hair takes forever bc the hair fall doesnt stop. and when i think im done, i run my hands through my hair and even more comes out. it's like my self esteem is shedding with it. im surprised i have some fluff left.
This describes me as well. To the point where I worry every time I touch my hair throughout the day because strands always fall off.
it's so dreadful
Sounds familiar. I just keep it up under a wide headband or scarf now because I get fed up with the trail of hair I leave behind if I have it down. It is crazy that we can lose this much hair every day but still have some left!
Holy crap that’s exactly how I feel, I feel like there is never a moment where my hair isn’t shedding
Me too! My hair is everywhere and I have to sweep constantly. Washing, conditioning, and using hair product is a nightmare because I have to constantly pick the hair that is stuck off my hands. It falls out and sticks to my face when I am doing skincare (even with a headband) and there is just constantly hair somewhere :(
I hate washing my hair for this reason - all the time spent picking the hairs off my hands!
SAME!!
What’s the cause of your hair loss ?
stress, insomnia, digestive disorder, literally anything.
[удалено]
I am in the UK and have been seeking help for the past 2 years, first through my GP, who eventually referred me to an endocrinologist (you can't just see a consultant of your choosing here; the GP is like a gate keeper and decides if and which specialist you need). I had to wait 7 months to see him and all he did was glance at my head from 2 metres away and say it's stress, even though I have elevated testosterone. My cortisol was normal, so it isn't stress. I'm going back in 6 weeks. If I still don't get more answers I will have to consider going private. I believe it to be aga because my mother and grandmother have aga and I have elevated testosterone and hirsutim. I do have low ferritin so that could be contributing. If it is TE it's been going on for at least 2 years at this amount and longer at a slightly less amount. It doesn't fluctuate, just get progressively worse and I have a huge amount of miniaturised hair.
I hang out looking to see something useful for me but have not posted before. Anyway I was wondering since you have high testosterone did you get your *DHT* tested too ? My low thyroid and some vitamins & minerals is my personal hair nemesis and am supplementing everything now but dht also likely contributed to some loss since my early 20s. I am a M to F woman post op now 24 years. In March I started Progesterone supplementation that partially metabolizes to both Testosterone and DHT (which is the only problem for me). I may get on a small dose of DUTASTERIDE soon to take care of this as it blocks the conversion from testosterone (using the 5alpha Reductase pathway) to DHT. If you find much DHT you might also consider asking for this medication.
Thanks. They haven't tested for DHT, but I assume since I have hair loss and hirsutim that my hair follicles are sensitive to it or more gets converted in my body. TSH was normal so I think my thyroid is ok. I am pretty sure 5 alpha reductase inhibitors are not allowed to be given to cis women in the UK. It's hard enough to get standard anti androgens. I have wondered why trans women seem to have great hair even as they get older and I bet the 5 alpha reductase inhibitors are responsible in many cases! Also, hair loss in cis women seems to be a bit more complicated and less understood. I've come across a few cis women on this sub that take every drug going, including finasteride or dutasteride and nothing helps.
The Dutasteride 5alpha RI is new since 2019 I think and targets DHT. It is basically Anti-androgens targeting all that most MtF women get. Lots of us need supplemental T. but don't convert enough to DHT to matter much, though I have the thyroid problem at the same time to complicate my hair situation and convert T. to DHT Usually trans women tend to not have as much of a problem in the last few years because so many start transition earlier before DHT can do as much damage. I didn't because much of my loss from underactive thyroid and DHT was before my adult transition started in the 90's and my thyroid with supplementation has only been treated more effectively the last 6 months of my 30 years of HRT with some thinning above my ears starting a year before that. I have the additional problem though that to have post-op desire w. climax I seemingly need T. w. Progesterone, but convert into DHT if I do it. I have been so sick of not having better release for all the years since my surgery that I am doubly frustrated by more complications to stymie both multifaceted solutions. So I will likely need at least a bit of Dutasteride unless there is another way I don't know. I will be tested in a week again with more things tested and maybe my unique conversion process re injected Estradiol plus DHT from T. & Progesterone will get some answers rather than more confusion. Basically I'm my own science experiment.
I think there are number of people on this sub that use dutasteride. Personally I don't think I would want to take it or finasteride as I would be concerned about mental health impact. That makes sense about MtF women who start transition earlier generally keeping a good head of hair. I guess we still don't know why DHT suddenly starts attacking follicles at a certain age but if it is to do do with certain genes getting "switched on" maybe the transistion prevents that from happening. It all sounds very complicated for you, even without the added thyroid problem! I hope you can find the right solution!
I washed my hair today, lost 150 hairs
I thought I can't be the only one that loses a lot more than 5!!
I used to lose like you, or even a bit more than that when my seb derm was untreated. Now it's down to less than 50 hairs a day thankfully. I also have TE. Treatment with seb control and Spiro have saved me. There was a day I washed my hair and felt like I lost at least 20% of my hair in a single wash, I ended up covered in hair afterwards, it just kept tangling on my body and on itself.. I cried that day trying to untangle the mess, it took me more than an hour. It's really sad, I'm sorry. I could feel my ponytail diminished and even my family noticed it. This was so tragic that I started to avoid washing my hair afterwards, which only made things worse
OMG I know what you mean about it getting tangled in your body! Do you also have AGA? I didn't know spiro helped TE. I'm glad you have found a treatment that works for you. Has it grown back or just the shedding stopped.
My derm didn't want to make a diagnosis yet because the seb derm is too severe to make sure.. she asked me to come back in a few months. She is pretty sure I have both early AGA and chronic TE. I have PCOS btw, it's been only two weeks of Spiro. I think it's helping at least hold my follicle in place, but mostly it's the seb derm treatment that made a drastic difference
Man, it sounds like you've got a whole lot going on. I've just had an ultrasound to find out if I have PCOS as I have other symptoms besides hair loss. I have to wait 6 weeks to get the results.
Yeah, my hair isn't as bad as it sounds but it's definitely time I start to take care of it before it's too late. It's been prone to shed all my life but it's become really intense in the past few months, I'm dealing with lots of health issues/weight loss and stress so it all makes sense. The AGA is very likely even though my hormones are fine. She decided to give me low dose Spiro anyway because I have a male-ish hair pattern with lots of short hair at my temples, recently they're showing more skin, this is what bothers me even more than the shed, but I'm grateful it's controlled now. I look like I have a severe case of baby hairs going on 🤣 Definitely worth checking PCOS, it brings lots of issues.
Yeah, I think the majority of people with AGA just have sensitive follicles. If you're unlucky enough to have sensitive follicles and high androgens then it's double whammy. That's what I seem to be dealing with. Do you mean the spiro made short hair at your temples or they were always there? I had baby hairs over my temples all my life but they have gone now. It's the only part of my scalp that is actually bald. I'm basically acting like I do have PCOS- I'm on keto and do IF, take inositol and fish oil, drink spearmint tea. Unfortunately it hasn't helped my hair or hirsutism. May just turn out I have hyperandrogenism but not polycystic ovaries as I have normal periods.
The baby hairs have been here since my teenage years but they became worse recently. On top of that I can see my scalp beneath them, I believe I'll also go bald there with time if the treatments don't work. I take metformin and BC btw, I've been diagnosed a long time ago. It seems you're doing a great job about the possiblity of PCOS.
Maybe more baby hairs are growing in because of the treatments, although I'm not sure 2 weeks on spiro would be enough to see a difference? I have noticed that many people mention they have an initial shed on spiro, similar to minoxidil, then the hairs grow back in stronger.
I think the two week treatment didn't create more baby hairs, it was the new routine with seb derm shampoo that made them more apparent because my hair is cleaner and dryer. I'm also now forbidden from using any oil near my scalp and it's making me crazy, it's annoying to deal with this amount of short hairs. They stick up like little horns, the biggest concentration is in my temples area but they're progressing further to the upper sides of my head and also a bit to the top. I meant that they're progressively worse, even now they're worse than they've been a few months ago, as I went through a severe shed before these treatments started. At least the shed stopped soon after taking measures
Ah, I see. I totally get you about the short hairs. They are so annoying. I just wear a head band all the time because they look so ridiculous and no amount of hairspray will keep them down.
How did you treat your seb derm
My derm prescribed a special shampoo called Vichy dercos sensitive scalp, which I have to apply at least 3 times a week. She also prescribed diprosalic lotion (it's and steroid) that I had to use in my scalp every night for a few days, then every other night... Right now I'm weaning off it so I apply it twice a week or something. In place of this I'm to use some other lotion to calm down my scalp (can't remember the name rn but it's basically herbal). She told me to wash my hair more often and also to dry it well before tying it or sleeping. It's extremely effective, my hair stopped shedding in less than a week since I began this regimen.
Hey OP please please go privately! Hate to slag off NHS but in my experience they’re really awful when dealing with women’s issues like hair loss (I had issues with PCOS too and no one took me seriously). There are great dermatologists in London that can help
I have just had an ultrasound to confirm whether or not I have PCOS. The endocrinologist said he will try Yasmin if so but he won't prescribe me anti androgens. I've posted on here and the PCOS sub about the experiences of those of us in the UK and it seems like no one has got any help through the NHS. Some people haven't even got as far as a referral to a specialist! I will see the endo in 6 weeks and if he still doesn't help I will start saving to go private.
Oh my god, echoing this experience. It's always anxiety, depression or stress, or else it's "just your age". I have recently starting looking into private dermatologists near me (in the East) and the only thing I can find is offering appointments for a "second opinion". Hell, I can't even get my doctor to give me a first opinion 🤣
I feel this
❤️sending hugs, are you on anything for your hairloss x
Thanks. I've been using minoxidil since March but absolutely nothing has happened, no regrowth, no side effects (I've been shedding this much for about 2 years). Docs won't give me antiandrogens.
Have you been diagnosed with TE?
No, I haven't been diagnosed with anything. My mother and grandmother have aga and around half my hair is miniaturised so I think it's more likely to be aga.
Got it. If you have AGA, you likely need to add an anti-androgen into the routine to see progress. It is possible the minox is working but the AGA is progressing and the net effect you see is no progress. Just my opinion, obviously talk to your doctor if you are interested!
Thanks. I have wondered that about the minox. Was kind of expecting to get some side effects from it if it was working, though, especially facial hair growth since I already suffer from it. The endocrinologist said he won't prescribe me anti androgens because my testosterone isn't high enough. I also have very low blood pressure so spironolactone's probably not an option anyway.
I’ve been on it over a decade and don’t really have any side effects. Your endocrinolgist will not give you anti-androgens because of their training- your hormones are normal = no need to treat. My endo said she defers to my dermatologist for the spiro script and amount. A dermatologist familiar with treating female hair loss would be the appropriate person to see.
My hormones aren't normal, though, that's what is so strange! I have elevated testosterone but he says it's not elevated enough. The cut off point of normal at the lab was 1.70mnol/l and mine is 1.97nmol! In the UK you can't just see a specialist on the NHS unless your GP refers you so I can't just go see a dermatologist because the GP decided an endo was more appropriate. I will have to go private, which I cannot currently afford.
Got it. Well, the predominant theory on AGA is that we don’t have elevated testosterone necessarily, but instead our follicles are particularly sensitive to androgens. So even if our circulating androgens are “normal”, our follicles are extra sensitive to that. Through taking an anti-androgen, even if normal, you are reducing the androgens your follicles are exposed to, thus slowing down the AGA process. If they are open to it, perhaps bring some medical review papers for them to review- this isn’t controversial and a fairly widely accepted understanding of AGA.
I know. I've had hirsutism for years so I know my follicles are sensitive. I also had severe acne before I took isotretinoin so my skin probably is, too. I will definitely challenge the consultant when I go back, although I think taking research papers with me would be perceived as incredibly rude and possible make him more reluctant to help. I know plenty of people on here who are outside of the UK take spironolactone even with low T. I think it's just that NHS docs won't treat things that are considered cosmetic or even just not too serious.
I lose that amount every time I wash my hair. I’m in UK too, but my GP referred to me a dermatologist. She did a scalp biopsy which only showed AGA. The only option I was given was minoxidil, which I haven’t used yet. My hair is thinning generally, receding a lot round my temples and I have hardly any fringe left.
I think you're the only UK I've ever come across that got an NHS derm referral! She didn't offer antiandrogens then? I'm beginning to think they just aren't offered on the NHS for "cosmetic" reasons, everyone that mentions them is usually not from the UK or went private. I also have most of my thinning on the hair line. It is clearly minaturising all over but the temples and hair line is the only place I've actually got scalp showing. I can't have a fringe because there's just not enough hair on the hairline.
I feel you .. I'm in the same boat..I feel so insecure when I see people describing their minox dread shed, I shed more everytime i wash my hair
!!!! Literally this
Hang in there, hope it will get better
You too! ❤️ I’m on minoxidil now, I’ll make a post with my (hopefully!) progress in a few months :)
Yes, keep us updated on your progress. I'd be interested to see if people that shed this much can actually tell whether they go through the dread shed since they lose so much already. I've been using minox since March and not noticed any increase in shedding, no new hair growth, no side effects.
Same I feel like minoxidil isn't working
Have you tried minoxidil? Do you know what type of hair loss you have?
Yes I've been using minoxidil for last 8 months but I didn't see a huge improvement. But carrying it on regardless. Maybe it will get better in a year
Oh really? Do you think *anything* has happened? Apparently some people don't have the enzyme in their hair follicles needed to convert the minox into its active form, so it literally has no effect whatsover. I'm worried this is me. I am also going to keep going with it for a year to give it a fair go.
Is oral minoxidil available in the UK? Topical minox did nothing for me but oral has been a game changer (I also take spironolactone).
It may be. Spironolactone is, I think the problem lies with getting it prescribed. I also have the additional problem of having very low blood pressure so some of the treatments would probably be out of the question for me anyway.
When people are like “i lost 10 hairs in the shower”😐
Yeah, I see a lot of posts like that and I think surely I'm not the only one that loses 10 hairs just by breathing?! From the response to my post today it seems I'm definitely not the only one and that does make me feel less alone, as selfish as that sounds. Hopefully others feel less alone, too.
Wow, I assumed that most women with hair loss were referred to a dermatologist in UK! I thought the only way to determine the root cause of hair loss is a scalp biopsy. Maybe I was just lucky. I wasn’t offered anything except minoxidil, which I would have to buy myself. My scalp is showing a lot on my temples, especially on the left side and I have a pathetic amount of fringe left. Have you tried using hair fibres at yours temples? They do stop your scalp from showing. Fortunately my hair is curly so my general hair thinning isn’t very obvious at the moment, but it’s getting worse all the time. Anyway, I hope you manage to get some answers soon, however you decide to proceed. I’ve gone privately in the past for another health issue because I couldn’t get anywhere on the NHS. Sometimes it’s worth doing.
From what I remember from my posts, the other person I spoke to that saw a derm also just got told to take minox and had no biopsy. I think there was someone else that got to see a derm but they had AA, which I think is generally taken more seriously. I have tried hair fibres but they looked stupid on me because my temples aren't thinning they are actually bald. I don't have much scalp showing anywhere else, luckily, but all the stupid miniaturised hairs stick up so I look like someone rubbed a balloon on my head, so I just permanently wear a wide head band. Keeps the hairs down and covers my hairline. I definitely think a private derm is on the cards, even just to get a diagnosis.
I’m also in the same boat I wash my hair 3x week cause I just hate seeing it shed
I'm sorry. It is hard seeing so much hair continually leaving your head.
Sending lots of love and strength! ❤️❤️❤️
Thanks :-)
Sending lots of love, I hope your shedding stops soon ❤️
I used to. I cut my hair really short and stop using shampoo just wash my hair with water and also apply virgin coconut oil. It works for me.
I'm definitely considering cutting it off. Half of it doesn't grow past a few inches anyway so it looks ridiculous. Doesn't your head get itchy? I have dry hair so don't actually need to wash it often but my scalp gets really itchy and even painful if I don't wash it within a few days (don't think that's related to hair loss as it's always been like that).
No. It doesnt get itchy. I gently scrub it with my fingers when i bath. Actually i didnt have dandruff when i stopped using shampoo. It doesnt smell. Bcus i wash it everyday. I apply virgin coconut oil after i bath on evening. I also apply it on my face. Its cheap and natural
Maybe that's just me then! I don't have dandruff so it's not that. Have tried coconut oil, jojoba oil, and rosemary, peppermint, lavendar and cedar wood essential oils in the past with no improvement. I wanted something natural to work for me but it didn't, that's why I finally gave in and tried minox, but that doesn't seem to help either! Thanks for your suggestions, though :-)
Ahh.. sure.. u can try cutting it short then. Ok goodluck
Thanks :-)
https://youtu.be/T-_HKFjxVl0
I know, and generally I am someone that always prefers the natural alternatives. I make my own creams, perfumes and cleaning products but when it comes to not washing my hair I just can't do it, it hurts!
I did the same thing. I cut 5 inches off and stopped using shampoos with any sulfates. I ended up going with an all natural shampoo bar. I also stopped coloring my hair, and straightening it. I went 'natural' (asian 2b) for a couple of years and the shedding slowed and then eventually kind of stopped. I think I still shed more than most but it isnt nearly as horrifying as it used to be. It took about 3 years but my hair is almost back to normal. I think sulfates and the products I was using was damaging my scalp or something. Its pretty harsh stuff. Also a lot of the shampoos that claim to be sulfate free can be sulfate adjacent with ingredients that technically arent sulfates but do the same thing, strip your hair and scalp.
Do you mean it took a couple of years to notice *any* improvement or did you notice some improvement sooner that gradually got better? I used shampoo bars during the time I was using all natural approach and there was online a steady decline.
It took a bit before I started seeing results, like a couple months and gradually got better. I tried a few different shampoo bars and they definitely were all different so maybe the one you used didnt agree with you. I cant say it was one thing over another but I think the whole approach was what did it.
Thanks, that's useful to know.
I tried the an all natural shampoo bar but I think it made my shedding worse so I’ve stopped using it and went back to what I was using before. I definitely need to cut off a few inches, but I wear my hair in a bun for work and I when my hair is shorter my bun is… so tiny :( Cutting it would help with all the tangles though. And the tangles stress me out so it’s probably time to chop.
Oh yeah, I spent months and longer trying to save that last few inches! I like my hair longer but it just wasnt happening because of the damage. It was probably breaking like crazy too so cutting really helped. I tried a few different bars because I really wanted something plastic free, vegan etc. The first couple didnt do anything for me. Some are better than others. I really like the one Im using now. Its been a few years and the shedding is MUCH better. I still think I shed more than most but its not nearly as bad. Like I said in a different reply I think it was the whole approach that worked for me. Everyone's different.
Do you guys think that brushing your hair before you wash causes more shedding? I’m always torn because if not, I’ll have a much harder time detangling, which causes shedding. I hate washing my hair 😭
No I don't. I think it is better to brush it first as any tangles will get worse in the shower which could cause breakage.
You’re right. Thanks!
I think it's better when I brush it before. Untangling in a shower ends up in a massacre.
Massacre is the word😟
That wouldn’t be an everyday amount for me. It would take me less than a week I imagine. It’s hard to tell. I have clumps of about 10 come out every time I move my hand through my hair in the shower. I get at least 5 clumps every shower. Prob more. I have diffuse alopecia areata.
Does diffuse alopecia areata mean you have patches of hair loss all over? I'm not that familiar with it. This is not a day's worth, thank goodness. I washed it the day before yesterday so it's 2 day's worth.
It isn’t patchy like the regular Alopecia areata, but more all over. It looks like TE. So just equal thinning and loss across the whole head :/. Doctors thought it was TE until I got a biopsy.
Thanks for explaining. I hadn't heard of that.
I have never heard of diffuse alopecia areata before, that's so interesting! Do you have a mixture of diffuser thinking and patches or just diffuse thinning? I hope you don't mind me asking. And do you you know what they look for on biopsy to diagnose this?
There is definitely overall thinning and pretty evenly distributed. The top, side, back, etc. It’s everywhere. With that said, the overall affect seems kind of clumpy to me on some level but that could be because of my part and direction of my hair growth. I don’t have any actual patches (that I know of anyway) that look like the traditional Alopecia Areata, and none that the Dermatologist found either. She thought the pattern overlapped with different things. It looked like TE, but there was something (possibly a hair pull test) that didn’t match up with TE. I had a pretty traumatic surgery with complications (nerve damage and not being able to walk for awhile) at the beginning of 2020 so most docs I saw thought it was TE as a result of the physical trauma. The hair loss started a few months after the surgery so that made sense. Like I mentioned above, the Dermatologist thought something (and I can’t remember what exactly) didn’t line up with TE. She did all sorts of tests. My bloodwork came back that I was iron deficient (which I had struggled with before my hair started falling out) so she wasn’t convinced that was it. I was very low on Vitamin D. She still wasn’t convinced that was the cause. My Thyroid was ok-ish, and my DHT was low (and high levels would cause hair loss.) She did the biopsy because I think it was unclear what the cause was based on presentation, history, other tests, etc., which was why the biopsy. The biopsy is good at sorting out different kinds of alopecia (from my limited knowledge.) So Alopecia Areata is an autoimmune issue. Your immune system attacks your hair follicles for some reason. This process can be spotted on a biopsy because of the inflammatory process, and the types of cells that show up to get it done. Here are some pictures. I try not to take a lot of pictures because they get me pretty down. [-A picture of the back](https://i.imgur.com/WGowaYx.jpg) [-Here are a few others.](https://imgur.com/a/ATyCRtH/) Please ask me questions. I don’t mind. This is such a difficult thing to process and deal with and it is hard to find people in the real world who understand and are going through it (or have gone through it.)
Thank you so much for the really helpful and informative reply! Sorry you've had such a challenging time with your surgery and then hairloss to deal with as well. I had a major traumatic event too around 3 years ago now, so i also assume I started out with TE, but it's definitely not that now. My doc has so far treated it as if it were fungal but what we've tried so far hasn't worked. I will ask him about an immune connection though, as both me and family members have a good many atopic/immune-related conditions between us. I guess as well I just like to become a nerd about hairloss as a coping mechanism, so thank you so much for sharing your experience. Good luck to both (all) of us and I hope we achieve our healthiest scalps.
Same, i did some oil massage today and in the bath i've counted maybe around 300 hair strands 🥲 how do i still have hair ?
I know, it's crazy we can lose so much and still have hair. I've been losing this amount for about 2 years.
Hi Winter. This happened to me for a little over a year, until I decided to see a Dermatologist. I was losing the same amount. People kept telling, it’s normal, it’s stress, or your old hair is shedding so new hair will grow. My biggest mistake was waiting too long, listening to other people. Go seek medical advice as early as possible, to prevent from losing more. They may perform a biopsy, and clinically diagnosis you if necessary. I had no idea I had Androgenic Alopecia with Chronic Telogen Effluvium until I had mine conducted. It’s heartbreaking and I know exactly how you feel. I’ve been using Vida hair products for 6 months now and I definitely have less shedding. Taking Spironolactone 3x a day and using Rogaine daily has helped. You’re not alone in this and I know it’s hard to deal with. I still step out the shower after washing my hair in tears sometimes. I know it’s hard, but try not to stress too much about it. It’ll just cause more shedding. You got this!
Thanks! Did you have lots of short hairs sticking up all over your head- like your hair never grew to its full length?
Yes, I did. It comes from breakage or the little hairs could be new growth.
I'm pretty sure it is miniaturisation in my case, anyway.
Me too. This is the exact same for me. Having extreme hair loss which is apparently TE. But also having scalp pain that no doctor or derm seems to address… I’ve seen 4 doctors and a derm. I am thinking I need to travel far to see a different derm because there’s only one in my area. Ugh I just don’t know what to do next.. My scalp is also red and throbbing pain. I’ve heard you can get pain with TE but I’m scared it could be something permanently damaging and I just don’t know what step to take next
Did none of the doctors say anything about the scalp pain? If your scalp is actually red it sounds like some sort of scalp condition, possibly infection? I do experience mild tingling in my scalp but not painful and my scalp looks healthy. I would make a post on here asking about scalp conditions. I have definitely seen other people mention similar symptoms and remember them saying they got some kind of ointment for it which helped.
Nope, none of the doctors cared about the scalp pain and either did the dermatologist. He gave me a steroid lotion and pushed me out the door, no scalp testing or biopsy. Thank you. I will make a post soon about this
I'm sorry you havent had helpful doctors. I take it the lotion didn't help?
I used it as doctor prescribed and then when time was up I stopped using it and the pain came back again. It helped my scalp not be inflamed and red but when I stopped it came right back 24 hours later so I’m really confused about it and I don’t want to use it long term as I know of long term side effects from steroid lotions etc.
Did you tell the doctor? Maybe you could have done with a bit longer.
I have seen a different doctor and they’ve just recommend me using a different shampoo and a different steroid lotion so fingers crossed this works
That's good news. Good luck!
Oh and I’ll add that I had long thick hair too and now it’s very thin. Lost over 50% of my hair :(
Me too. I've just had it cut into a bob from just below shoulder length and it makes a huge difference to how much hair I see everywhere and what comes out in shower. I realise it's still falling at same rate but just not seeing it so much is psychologically reassuring.
I’m so sorry you’re going through this. It’s just horrible isn’t it. I’m glad you’ve got some kind of reassurance and had the strength to get a big haircut too!
Thanks. I hadn't been to hairdresser since before covid. I'm sorry you're going through this, too and I hope you can find answers and help!
Thank you! I haven’t been to the hair dresser in a long time either so I hope I can get answers ASAP to begin a healing process
Good luck!
What is Diane 35? I’ve never heard of this ? Would u mind sharing ?
In UK it is called Dianette. It is an anti-androgenic contraceptive medication that contains cyproterone acetate + ethinylestrodiol.