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chicanery

My (F19) accutane telogen effluvium journey (PICS)

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Update - 8 months off accutane: My hair is still shedding abnormally. Heavier than it was about a month ago. In no way is this slowing down - it seems to have leveled out. Hair is horribly thin now, I feel like a shadow of my former self despite having (mainly) good skin. My hair was amazing before.

I'm not gonna even think about Minoxidil until autumn. Taking MSM now (2000mg a day), bamboo silica, zinc, iron etc. 
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I'm just posting again bc I am so sick of this. 8 months off this drug, yet every time I was my hair and dry it, I will pull out between 200-300 hairs. This doesnt include all the hairs I'm shedding in the shower and when I brush it. I honestly am aware that I have a maximum of 5 months before my hair's so thin and patchy that I'll be too upset to go out/socialize. I can't believe this is happening to me at this age. There is just NO improvement. I've been losing hair heavily for nearly a year now (this started during my course.. I WISH i had come off accutane immediately when it started).. My iron is fine now. It's just this drug - I can only hope that this iis TE and not a result of accutane changing the transcription of certain hormones/making testosterone act on my follicles (which I read about ). 

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I'm now past 6 months off of being off the drug and am still shedding. I thought for awhile it was slowing down but it has seemed to pick back up. I have thin, blonde hair to begin with so I'm visibly bald in multiple places and my hair is so thin you can see through it. My wedding is in 3 months and I have no clue what to do. No signs of regrowth or this turning around... 

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IMG_9246.JPGIMG_9270.JPGActually disgusted and severely depressed - I am going bald. The shedding has sped up so much this past month. Here's some recent pics to show all the skeptical people that yes, Accutane CAN cause 60-70% hair loss. Keep in mind, I had ridiculously thick Hispanic hair before. I am now completely different person.

This is driving me to insanity. I'm so angry and upset. 

I hope these pics put some ppl with mild acne off going on accutane. I posted a pic on insta and constantly get messages from young girls telling me that they "barely have acne, just the odd spot here and there" but that they're taking ACCUTANE. This drug is serious as hell and these pics show that. If this situation worsens, I dread to think how I'm gonna cope with summer Edited by chicanery
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I'm in the same boat.. at this rate I won't even have any hair left by my wedding.  I was only on the drug for 30 days & stopped. I guess this just shows how incredibly powerful (and horrible) the drug actually is. SO frustrating and disheartening to have to deal with this. 

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Ugh I am so sorry, especially with your wedding coming up!! That is horrendous :(. This is so awful and scary. I'll keep updating - I pray this turns out okay for us!! Have you seen a specialist/been diagnosed? I'm stll praying that this is a hard-hitting, drug induced telogen effluvium and that we've just been affected badly. However, I can't help but feel that this something different. It feels like the Accutane has permanently affected my follicles.. I really don;t know. I'm only 19 as well.  I get regrowth but it all falls out at 1cm (!!!!) so my hair is just getting thinner each week.

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I hope so too! I saw my derm around 3 months post to discuss the hair loss but he didn't say much and just recommended Minoxidil (which I'm still hesitant to try as I know it makes the hair loss worse at first and I don't have any more to lose). I just can't believe mine is this bad from just being on the drug for a month. I have been having regrowth fall out as well but read somewhere it sometimes takes a few regrowth cycles to get back to normal. I'll keep updating as well - it helps to know I'm not alone! 

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i have hair loss/shedding from last May. Trigger was stress and weightloss a stone in a week. Diff to your triggers, but the shedding is the same. saw 2 derms both said telogen. am now shedding 100 a day. more would come out if i kept touching my hair i am sure. hair is fly away tangles weightless and thats the hair still in my head. it all looks bad. dont know how it will recover.  regrowth alot of vellus fine thin hair. just started to ahed some of this regrowth ranging from 3 months old to at least 10 months old along with the crappy conditioned old hair.  the thin regrowth is very thin.  when it started my iron wasn 16. in feb it was 30.4 i am now on iron derm finally prescribed it for me dr refused it. nails are staring to pink up. slowy. been on iron for 22 days.  my body hair is also affected by this.. sparse hair everywhere and very slow growth of what there is. my hair looks exactly like yours. no sign of it stoppng
 the impact of hairloss on someone is underestimated it is devastating. im hoping when my iron increases to above 70 it will start to improve. im hoping the shed regrowth is the start of it improving and stronger hair will now replace it. cause there was no way it would have thickened up on its own. 60% of hair gone no real regrowth at all

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So, I will probably regret this since it causes severe acne in some people (all I need to get again), but I've ordered 10,000 iu of biotin. If it breaks me out I'll stop taking it immediately. I just can't keep reading things like "accutane depletes biotin" and NOT supplement, when my hair loss is still so severe. Now, I'm taking biotin, bamboo silica, iron, zinc, D3, multivitamin, selenium, spearmint for my acne.

I need to focus on my university exams now so I'll check back in in several weeks. Hopefully I'll have some positive news but I v much doubt that.  

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Okay, my skin is already breaking out in pus-filled spots.. I am so upset that I can't handle 10,000iu. I'm gonna slip the pill in half, drink loads of water and see if I can cope with the 5000iu. If my skin starts getting noticeably worse, I'm just stopping this. 

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I've been taking 2500iu and it doesn't seem to have affected my skin.. although it doesn't seem to have any affect on my hair either. My hair loss is getting worse it seems with still no signs of regrowth. :( 

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Hi!
I'm currently experiencing the same thing and I'm so glad I found this thread buried within all the dead ends and posts with no updates. I'm a 21y/o female and I started taking 40mg/day for moderate persistant acne in Feb 2016. I was meant to come off it in September, but my derm dropped my dosage down over the last few months due to extremely dry lips and stuff, so I ended up coming off it in Dec 2016. I also spent the majority of the year fiddling around with different birth control (migraine sufferer - side effects etc) and settled on the one I'm currently taking around the same time I came off accutane, so I'm now wondering if that has had anything to do with my hair loss. I've also got horrendously low iron and I've been super lazy with the supplements, but reading this thread has me determined to get my ass into gear.

My hair has always been super thin, pretty long, and pretty oily (have to wash it every 2 days or it just looks gross). It's also always grown suuuper slowly, like maybe 1 inch every 6 months. While I was on accutane, I could get away with not having to wash it for maybe 5-6 days which was nice, but it's now back to every second day. My skin has stayed in pretty good condition, with only a few pimples on occasion (probably hormonal, definitely manageable).

Aaaanyway, I'm not too sure when my TE actually started as my hair has always never really been in fantastic condition as far as I'm concerned, but I'm 5 months post-treatment and started to notice massive hairfall a few weeks ago although I don't think I'm quite reaching the 300 mark. I'm wondering if this might have something to do with the 'percentage of hair in X stage' thing? As my hair was pretty thin to begin with,  I don't think I'm losing quite the same amount of hair but I feel like I've lost about the same percentage, as my ponytail has basically halved in diameter and is now looking more pathetic than ever. Not sure how scientifically viable that is, but I'll keep my eye on it at least.

It's also super hard to tell if I have any regrowth considering my hair grows super slow, and is prone to breakage so I've got no idea if all the little flyaways are new baby hairs or snapped off old hair. I also haven't really noticed any specific patches or anything as it seems to be more or less falling out everywhere. It doesn't seem toooo noticable at the moment (to other people at least), but that may just be my equal parts optimism and denial. Trying to stay positive at the moment but nevertheless shitting myself about the prospect of being bald by new year. Glad to know I'm not alone!

I've got an appointment with both my docter and my hairdresser next week so I'll see how that goes and keep you posted with any updates. Fingers crossed we all start seeing some improvement!
 

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I'm really, really worried guys. (I'm the thread author btw). I'm now 9 months post-Accutane . Here's my current situation: still losing 200-300 hairs a day. The shedding seems to be worsening again. My scalp itches and tingles at night because so many hairs are leaving the follicles. 

I don't know WHAT do to. I seriously don't want to go on minoxidil: I understand that it can, in theory, help, but 1. applying something regularly and feeling that I am "treating" my hair loss is gonna be SERIOUSLY psychologically damaging for me. I have bad anxiety and I really tend to hyper focus on my image and also on certain health issues. Washing my hair is bad enough. Applying minox regularly and then probably seeing no improvement or incredibly slow improvement will probably destroy me. At least now, I can dossiciate from this issue by only thinking about it when I wash my hair.

My hair is SO horrible now. I seriously used to have the best hair out of the room at any party I went to. Sounds vain but I'm not exactly boasting bc I obviously now don't have that/ I'd say I have 40% MAX of what I had before. This loss is absolutely atrocious in severity. 

I started taking biotin at 10,000, then switched to 5000iu because biotin gives me extremely oily skin + acne, but then went BACK to 10,000 iu because I'm so fucking desperate to have y hair that I am actually risking having acne again. That's soooo sad to me; at this point, I'm so devastated about my hair, I'm thinking "If biotin gives me my hair back, and also gives me acne, who cares bc I can just wear thick makeup like I used to". I'm sure that this is irrational thinking and that acne would destroy me, but I'm just upset that I'm at a point where 'm risking severe acne, because I feel like it means that I'm actually officially regretting accutane for the first time. That's how bad this has got. 

The reason why I'm keeping up with 10,000iu of biotin even though it is bringing my skin back to pre-accutane (slowly but surely) is because my eyelashes are now incredible (!). They have grown significantly longer, are thicker and darker, and I have new ones growing from each follicle. This isn't wishful thinking - I have compared pics, and my eyelashes have gone from alright to amazing in a couple of weeks. I believe that, therefore, the accutane may help better quality hair grow in on my HEAD. But who knows? I'll see. If the acne gets bad, I will obviously have to cut my biotin dose to 5000iu.

Got big exams coming up so I'm gonna forget about this and then re-assess in 6ish weeks. But it's so hard. And I'm so, so bitter at this point. 

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How is the biotin going? I have been taking 2500iu since my hair loss started but haven't noticed a difference in anything other than my nails growing faster. I'm thinking I might try 5000iu as I'm also getting desperate. I don't want to try Minox, especially this close to the wedding. My hair loss just isn't slowing down and I STILL have no regrowth anywhere. Have you been seeing any regrowth? This is just so frustrating and disheartening. :( I read somewhere online that onion juice masks aid in hair growth so I might try that. I'll keep you posted. Hang in there! 

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On 5/21/2017 at 1:57 AM, MeritNorth said:

How is the biotin going? I have been taking 2500iu since my hair loss started but haven't noticed a difference in anything other than my nails growing faster. I'm thinking I might try 5000iu as I'm also getting desperate. I don't want to try Minox, especially this close to the wedding. My hair loss just isn't slowing down and I STILL have no regrowth anywhere. Have you been seeing any regrowth? This is just so frustrating and disheartening. :( I read somewhere online that onion juice masks aid in hair growth so I might try that. I'll keep you posted. Hang in there! 

 
Hey,sorry for the really late reply - I swear I did reply, my internet must've glitched! I have noticed no change in the shedding unfortunately. I'm gonna keep thinking the 5000iu though, because my eyelashes are  great and and it's not breaking my skin out too much. I'm still losing loads of hair and regrowth isn't staying. Either Im screwed or life or this will slowly recover. I feel like it's honestly gonna take about 3 years. They NEED to be honest with people and tell them that acutane can initiate a change this profiund in your body/apppearance :(.
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Hi. 
My hair is falling out due to accutane too. 
9 Months off the medication and still sheding. 
I Have lost about 60% of my hair.  
I'm terrified with this situation, can't stop thinking about that. 

Current treatment: Mimoxidil 5% (once a day) and Finasteride (I'm male, 20 years old). 
I also have benn taking some suplements (Vitamin E, Vitamin D, Zinc, Biotin), but they don't do nothing for me. 

I'll follow the thread. 

(My English is a work in progress. Please feel free to correct me)

Edited by Yar
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Hi OP, I registered just to ask you one thing: What's your FERRITIN level? Ferritin levels under 70 will cause hair loss and weak regrowth. I know what I'm talking about. Up until two months ago my ferritin was always 20-30. My hair shed badly 4 years ago, I didn't have all that much hair to begin with, but all in all I probably lost about 2cm of ponytail circumference. Not a great look, especially if my hair is wet. Imagine Gollum. Anyway, two months ago I got an iron infusion because I was having other side effects from ferritin deficiency. Such as sadness, anxiety, fatigue, memory problems, brittle nails etc. After that infusion my ferritin was at 150. And in the last two months I've been noticing some regrowth in places where my hair used to be longer and stronger. At the moment it looks a lot like fluffy baby hair.

What I'm saying is, go get your ferritin levels checked. If your doctor tells you that a level of 70 is not needed for hailthy hair growth they're lying. 

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16 hours ago, mihona said:

Hi OP, I registered just to ask you one thing: What's your FERRITIN level? Ferritin levels under 70 will cause hair loss and weak regrowth. I know what I'm talking about. Up until two months ago my ferritin was always 20-30. My hair shed badly 4 years ago, I didn't have all that much hair to begin with, but all in all I probably lost about 2cm of ponytail circumference. Not a great look, especially if my hair is wet. Imagine Gollum. Anyway, two months ago I got an iron infusion because I was having other side effects from ferritin deficiency. Such as sadness, anxiety, fatigue, memory problems, brittle nails etc. After that infusion my ferritin was at 150. And in the last two months I've been noticing some regrowth in places where my hair used to be longer and stronger. At the moment it looks a lot like fluffy baby hair.

What I'm saying is, go get your ferritin levels checked. If your doctor tells you that a level of 70 is not needed for hailthy hair growth they're lying. 

6
Hey! I had  low iron as I am a vegan, but I've sorted this out and my iron is mid 60s. I'm STILL taking supplements bc I wanna get it up to about 100 if possible, and I think I'll be on a maintanance dose of about 200mg for life (I'm v prone to low ferritin). Thanks so much for this comment - I think you're definitely right ... Accutane has wrecked my hair, thats's for sure, but I also probably won't get good regrowth until my iron is around 80.
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I feel your pain! I haven't even taken accutane but i'm experiencing TE from what I (and my doctor) can only put down to birth control. I went on Dianette last year around February and in November my scalp started burning and tingling(?) and my hair started to shed all over. Iv'e had blood tests and everything has come back normal. I didn't go through a stressful experience or anything like that, I have no idea really what triggered it. My doctor thinks it was the BC so I stopped taking it. I felt like in around February/March the shedding was calming down, it didn't stop but i wasn't losing as much. The burning had also stopped however in April the burning scalp returned and so did the mass shedding! Again at this point I feel like the shedding is started to calm down but iv'e lost so much hair and I'm scared the burning scalp will come back again :( I'm currently using SLS free shampoo and trying to be super gentle with my hair, no heat or harsh styling! I use Dr Organic Hemp Shampoo + Conditioner, it's suppose to promote healthy growth and help reduce hair loss. I am getting new hair growth but sometimes that sheds too. I hope this stops for all of us, I feel that no one I talk to (who isn't going trough this) realizes how soul destroying it is to see your hair get thinner and thinner, to be scared to take a shower or to brush your hair. 

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I'm going on 9 months of being off the drug. I'm honestly just annoyed at this point that the hair loss is still happening with no signs of stopping and no regrowth. Annoyed that Doctors don't feel it's appropriate to warn that this is a side effect. I'm literally going to have no hair left for my wedding in August and I hate it. I hope everyone else is experiencing some kind of hope because this just sucks! 

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On 14/07/2017 at 11:57 PM, MeritNorth said:

Any updates from anyone? It almost seems like my shedding has gotten worse. :( 

10 months post accutane and still shedding. Don't know what else I can do. 


  Edited by Yar
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11 months and no improvement. I've stopped taking biotin and p much all the other vitamins bc theyve been worsening my anxiety and giving me panic attacks when I'd otherwise be able to cope. Might sound questionable, but 2 weeks off them now and I have close to zero anxiety. Plus, I'm 99% certain that a healthy diet is all that is really needed in terms of hair growth unless there's a real issue (such as low zinc/iron - i am still taking both of those). 
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