I'm so glad you posted this. I'm not sure if what I'm experiencing is T.E but ever since the last week of my first month of accutane I have been experienced heavy hair shedding (150-200 hairs a day), these hairs have a white little keratin bulb. I'm currently on month two week two and my hair continues to shed this heavy. I read that most people experience T.E near the end of their treatment, however I'm losing so much hair near the begging. When I spoke to my dermatologist during my one month follow up he said hair shedding is normal on accutane. But it has gotten worse since then. I'm not sure if I should proceed- which is hard, because although I've only been on this treatment for over a month, my skin is improving day by day.

Thank you for sharing, and wishing you a speedy recovery.

Hey chicanery!! 

As we both started on Accutane at the same time I always keep track of your updates and progress. Im glad to hear Accutane cleared your skin, after all that was what we wanted
But it sucks that you're suffering from hair loss this much now 🙁
I do have to say my hair is still quite dry and brittle, and everytime I run my hands through my hair I end up losing a whole bunch, especially when im in the shower. 
I never took the full dose however, I think that might have helped. Especially knowing what my brother went through when he took two full heavy rounds of Accutane. He is now bald on the back of his head, and he's only 20 years old... it might have been partially genetics though, that's what I hope. 

I really do hope your hair improves over the next few months chicanery!! These are probably no brainers, but I try to use shampoo as little as possible, when im in the shower I almost solely use conditioner and hairmasks and oil. I havent had a haircut in four months as I feel someone yanking and pulling my hair is gonna make things worse. 

Good luck chicanery, let us know how you are doing every now and then!! 

Xx DarkenedCloud 

You've probably already seen my post if you've been reading about hairloss on this forum. I started accutane in Feb and my shedding started in may and is still ongoing. At its worst, I was shedding up to 800 hairs a day. I had to stop counting it was making me ill. The shedding hasn't stopped but I am now losing around 200-300 a day. That's a guess, I do not count any more! Luckily for me I had thick hair at the beginning and my parting hasn't widened, but I'd say I've lost atleast50% of my hair.

What's worse..... my acne has returned. I had beautiful skin since week 8 of my treatment until around 6 weeks after finishing my course. Absolutely gutted. Tying to work out what to do next.

A piece of advice for anybody suffering from accutane induced hairloss is to stop counting the hairs, and to continue seeing your hairdresser for regular trims. Get your blood work done and make sure your iron and thyroid levels are within normal range. Try not to jump the gun with supplements, I actually wonder wether the return of my acne is due to the supplements I was taking which included biotin and B12, which are notorious for causing acne. I discontinued them because they made me sick... I think accutane has done something to my stomach - I hadn't vomitted for over 10 years prior to this. That includes 2 pregnancies, 2 natural births, and 4 episodes of renal colic caused by kidney stones. I always had a very very strong stomach! I'm only 24.

OP - all the best for your recovery and fingers crossed your skin stays lovely and clear! You're right, hair loss is no joke. Many people (myself included) think 'it will never happen to me.'

You can always read about the hair loss thread, though it's a long thread. Some yes recover from T.E. and other it is a constant battle, or the hair stops shedding, but remains thin and dry etc. If your a female and your acne was originally hormonal, Accutane probably won't work and acne will return and I would have labs for hormones regarding the hair loss.

Good Luck, as mine over 8yrs goes in cycles

8 hours ago, oli girl said:

You can always read about the hair loss thread, though it's a long thread. Some yes recover from T.E. and other it is a constant battle, or the hair stops shedding, but remains thin and dry etc. If your a female and your acne was originally hormonal, Accutane probably won't work and acne will return and I would have labs for hormones regarding the hair loss.

Good Luck, as mine over 8yrs goes in cycles

Hey, how would you know if it's hormonal acne or not? What tests could you have? When I read about it I don't have any of the symptoms, apart from acne of course.

If it was hormonal acne, would certain contraceptives help? My doctor asked wether I wanted to try Dianette before accutane but I refused as I don't like the idea of having 'false' hormones in my body.

Is most of your acne around the chin, is it worse around your period, is it cystic, You also mentioned stomach issues, problems with the gut can cause a lot of issues. Dianette may help or certain contraceptives. Have you tried natural approaches in diet etc.

Unfortunate, Accutane itself can cause hormonal issues. Retinoid, (Vit A) I guess you could say a precursor to active hormones that regulate the expression of your genes.

I take it you have had your iron, thyroid etc tested and all were normal?

Maybe try natural hormones if it is the issues.

Thanks for the info. I changed my diet a few months before starting accutane, it didn't clear my acne but it helped with the inflammation. I haven't had any acne on my chin/mouth at all since before accutane, and I have never noticed a change around my period (I'm having one right now but no new spots etc.) The acne I had before accutane covered my entire face with no exceptions! And neck, back, chest.

The acne that I developed a few weeks ago has been steadily clearing up and I haven't had any new breakouts since. I am now wondering if it was due to the supplements I was taking for my hair. The breakout was on my right cheek. Fingers crossed it was just a reaction to the supplements!

I had my thyroid and iron levels checked a few weeks ago and those came back fine. I'll come back with updates!

I meant to ask you along with the hair loss do you have any breakage or dryness?

On 9/30/2016 at 11:37 AM, chicanery said:

To my horror, I started experiencing hair loss around June; telogen effluvium, shown by the "bulb" of keratin at the end of each hair I lost. It's common with Accutane... the drug "shocks" the system, pushing far more anagen (growing) hairs than normal into the telogen (falling out) phase, so instead of losing 100 hairs a day (which is normal!), you may lose 300 hairs a day until the hairs that Accutane has affected naturally fall out.This can take months, depending on how many hairs the drug has pushed into the telogen phase prematurely. Ive done a lot of reading on T.E. and it seems like those taking Accutane rarely losemore than 30% of their hair. However, in serious cases of T.E (e.g. those induced by the hormonal trauma of childbirth), up to 70% of the anagen hairs can be pushed into T.E, meaning youll lose over 2/3rds of your hair.

Can you tell us where you got this information? Is this how your doctor explained it? What exactly has your doctor said? I'm asking because it sounds like a scientific explanation, and unless you have a credible source, like your doctor, how do you know it's accurate?

8 hours ago, oli girl said:

I meant to ask you along with the hair loss do you have any breakage or dryness?

I haven't experienced any breakage or dryness at all. That could be because I've been going to my hairdresser regularly, she 'nibbles' my ends every 10 weeks so I guess there is never any room for splits, breakage etc. Also, when my hair gets oily I leave it for as long as I can before washing!

I am going through massive hair shedding as well. I'm 26, but had beautiful hair as do all the women in my family. I was on Accutane for 6 months, and the shedding started during my last week of treatment. I am now 3 months post, and shedding hundreds a day. I had mild to moderate acne, and if my shedding continues I too will regret taking accutane. I didn't expect this horror of shedding, it's completely awful! I'm terrified to wash my hair, and the oil is back so over 3 days I HAVE to wash it. Anyway, I hear you girl!!!!!! It's helpful to know other people are going through what I'm going through.

Also: have you noticed any regrowth? I have a million fly aways, but I also think that may be just because my hair is so much thinner now that my normal amount of fly aways seem excessive. I'm not sure how to tell if I'm having regrowth....

18 hours ago, Lapa1052 said:

I am going through massive hair shedding as well. I'm 26, but had beautiful hair as do all the women in my family. I was on Accutane for 6 months, and the shedding started during my last week of treatment. I am now 3 months post, and shedding hundreds a day. I had mild to moderate acne, and if my shedding continues I too will regret taking accutane. I didn't expect this horror of shedding, it's completely awful! I'm terrified to wash my hair, and the oil is back so over 3 days I HAVE to wash it. Anyway, I hear you girl!!!!!! It's helpful to know other people are going through what I'm going through.

Also: have you noticed any regrowth? I have a million fly aways, but I also think that may be just because my hair is so much thinner now that my normal amount of fly aways seem excessive. I'm not sure how to tell if I'm having regrowth....

Hello, I have quite a lot of regrowth even though my hair is still shedding. The regrowth does look like fly aways! My new hairs range from 1 inch to around 6-8 inches (estimate.) it does look a little silly sometimes but it's an encouraging sign.

I'm still not counting the hairs I lose but when I washed it last I did count, and there were less than one hundred hairs - I had been losing up to 800 on hair wash days in the past. Fingers crossed it's slowly letting up. (For reference, I wash my hair around every 6 days but brush it every day.)

Wish you a speedy recovery with your hair loss, I know how hard it is!

How are your nails doing since accutane?

My nails are very brittle; but I had gel on them pretty b much my whole treatment. I'm just now teying to grow them out au natural! So it may be damage from the gel.

For the 2 months post accutane I was able to go 7 days without washing; I got pretty greasy but it was manageable. Now my oil is full on back so by day 3 I have to put sooooo much dry shampoo in that my hair feels like straw haha. Abd looks TERRIBLE. so I try to go 4 days. The dry shampoo makes my hair really ratty day 4 and it feels more damaging to try and brush through it than just washing.

How long is your hair? Mines pretty long, I have been considering cutting off a bunch to help stop tugging and snarls which probably causes more loss. UGHHH! it's crappy. I'm glad to hear yours seems to be slowing down, that is such great news+!!!!!!

Chicanery, and others,would you be willing to post pics of your hair loss? Even a before pic for comparison. I think it would be really helpful. We read a lot of these types of posts, but rarely does anyone even post a pic. Again, I think it would be a great help in understanding it and seeing exactly what you're talking about. Thanks!

Hey Chicanery, and others who experienced this, can you post pics of your hair so we can see what you're talking about? Thanks!

Does seeing the hair bulb mean anything? Don't you have the bulb on ANY Telagon hair, whether you have TE or not? TE is basically too many hairs are stuck in the telegon stage. But doesn't everyone have the bulb on their telegon hairs? I took my second round of accutane a 1.5 years ago and had hair thinning but I grew back in about 6 months. I am going on a third round this week tho. I have mild but persistent acne.

I feel like hair loss with accutane is rarely permanent. The reason you see so many posts, is because there are two people who are going to post. 1. The people who suffered a rare side effect. And 2. Hypochondriacs. Millions of people take this drug, and have no problems. People who either have no problems, or are not worried about problems, don't go on the internet and say "I took accutane and had no hair loss", they just go on with their lives. These sites have something called sample bias, which is what I just explained. Why would someone who had success say, "hey I took the drug, everything was fine". For example, I'm back on this site bc I relapsed. Had I not, I wouldn't be on this website lol

If your hair is dry and brittle don't wash it, and when you do, wash ONLY with conditioner

On 10/27/2016 at 3:22 AM, JohnSmith21 said:

Does seeing the hair bulb mean anything? Don't you have the bulb on ANY Telagon hair, whether you have TE or not? TE is basically too many hairs are stuck in the telegon stage. But doesn't everyone have the bulb on their telegon hairs? I took my second round of accutane a 1.5 years ago and had hair thinning but I grew back in about 6 months. I am going on a third round this week tho. I have mild but persistent acne.

I feel like hair loss with accutane is rarely permanent. The reason you see so many posts, is because there are two people who are going to post. 1. The people who suffered a rare side effect. And 2. Hypochondriacs. Millions of people take this drug, and have no problems. People who either have no problems, or are not worried about problems, don't go on the internet and say "I took accutane and had no hair loss", they just go on with their lives. These sites have something called sample bias, which is what I just explained. Why would someone who had success say, "hey I took the drug, everything was fine". For example, I'm back on this site bc I relapsed. Had I not, I wouldn't be on this website lol

If your hair is dry and brittle don't wash it, and when you do, wash ONLY with conditioner

Sorry but I dont see your point. Yes, any telogen hair will have the white bulb. TE is indeed too many hairs in the telogen phase, and sufferers are aware of this and the fact that it usually resolves itself in about a year (unless its chronic). However, this doesnt make it any less terrifying, especially if the scalp becomes visible while the shedding is only worsening, all with no signs of regrowth.

Also, it should be said that people look out for the white bulb to confirm that it is TE because other forms of hair loss do obviously exist, and some include the shedding of anagen hairs. Its generally understood that if a telogen hair is lost, with the bulb, a new hair will start growing. Even in chronic TE, when the cycle of shedding repeats and repeats, you WILL grow new hairs. If you start losing anagen hairs, this is more likely to be a sign of a genetic balding issue and may not indicate any new growth (which is why it shedding anagen hairs worries people, and hence why people talk about white bulbs online as its a sign that recovery in 6months-1year will be likely because they most probs have TE).

Again, yes, heavy TE like what I am going through may be a rare side effect. Im not saying I regret taking Accutane.. I adore my skin at the moment and I am aware that I am young and healthy and my hair will grow back. Im not trying to put people OFF taking Accutane either. I get what you mean that people come online only to post horror stories and once they recover they dont post because they have no reason to, but again, I think people are aware of this.

Im posting so that other TE sufferers can find my posts in the future, and so that I can gather some anecdotal evidence about Accutane induced TE. I consider myself pretty resourceful and have read extensively about TE, but Im still unsure as to HOW bad Accutane TE normally is (because of, as u said, the lack of TE recovery success stories posted).

And as far the point about brittle hair what are you referring to, TE or general Accutane hair dryness that isnt actually TE? If the former, I guess youre right because your hair can snap off while you wash it when on Accutane, even if youre not shedding, but if you have TE, absolutely NOTHING will stop the shedding, no only wash with conditioner bullshit (Im sorry, but this is a pretty sensitive topic for me right now). The shock to the system has occurred and those hairs are in the telogen phase ready to fall out already. You can only hope for regrowth.

To everyone else - I am starting a thread and will document my entire TE journey with pics on this subforum

41 minutes ago, chicanery said:

Sorry but I dont see your point. Yes, any telogen hair will have the white bulb. TE is indeed too many hairs in the telogen phase, and sufferers are aware of this and the fact that it usually resolves itself in about a year (unless its chronic). However, this doesnt make it any less terrifying, especially if the scalp becomes visible while the shedding is only worsening, all with no signs of regrowth.

 

Also, it should be said that people look out for the white bulb to confirm that it is TE because other forms of hair loss do obviously exist, and some include the shedding of anagen hairs. Its generally understood that if a telogen hair is lost, with the bulb, a new hair will start growing. Even in chronic TE, when the cycle of shedding repeats and repeats, you WILL grow new hairs. If you start losing anagen hairs, this is more likely to be a sign of a genetic balding issue and may not indicate any new growth (which is why it shedding anagen hairs worries people, and hence why people talk about white bulbs online as its a sign that recovery in 6months-1year will be likely because they most probs have TE).

 

Again, yes, heavy TE like what I am going through may be a rare side effect. Im not saying I regret taking Accutane.. I adore my skin at the moment and I am aware that I am young and healthy and my hair will grow back. Im not trying to put people OFF taking Accutane either. I get what you mean that people come online only to post horror stories and once they recover they dont post because they have no reason to, but again, I think people are aware of this.

 

Im posting so that other TE sufferers can find my posts in the future, and so that I can gather some anecdotal evidence about Accutane induced TE. I consider myself pretty resourceful and have read extensively about TE, but Im still unsure as to HOW bad Accutane TE normally is (because of, as u said, the lack of TE recovery success stories posted).

 

And as far the point about brittle hair what are you referring to, TE or general Accutane hair dryness that isnt actually TE? If the former, I guess youre right because your hair can snap off while you wash it when on Accutane, even if youre not shedding, but if you have TE, absolutely NOTHING will stop the shedding, no only wash with conditioner bullshit (Im sorry, but this is a pretty sensitive topic for me right now). The shock to the system has occurred and those hairs are in the telogen phase ready to fall out already. You can only hope for regrowth.

 

To everyone else - I am starting a thread and will document my entire TE journey with pics on this subforum

Yeah i understand, I experienced TE after STOPPING my second course. I was back to normal in 6 months. It's my understanding that the hair comes back UNLESS you are genetically predisposed to hair loss, in which it speeds up a natural process. Good luck, and I'm sure you will be fine! Try not to stress or obsess too much bc that also ironically causes TE

I suggest anyone with hair loss from Accutane see someone to get a dx...Accutane can cause hair loss in many ways. TE is most common, which in some goes in cycles, If you are a male and have a hx of mpb in your family it will speed up the process. There are many reports along with TE....Alopecia and if any like myself who suffer from autoimmune i.e. graves and type 1 diabetes or iron, vit d deficiency then there it is battle, but some hope....

Good Luck chicanery  

I am suffered from hair loss currently when I mark my third week on accutane.I a bit freak out about my hair loss.It never happen so badly like that before.I called doctor and she said it is nothing related about the medicine.I do felt shock cause Im on low dosage of accutane only.Im taking 20mg with one day off.She asked me to stop it if I so scareed about it.I just took my three months medicine on wednesday because I am going to start my freshman year at university.Im stop taking it yesterday.Im going for hair cut later.Hopefully it helps.

I'm not on accutane but I was in tretinion for almost a year. My skin did clear up but I'm worried about my hair. It feels really light and at the top it's thin. Is this thinning permanent? Since I just stopped with the cream will my hair thicken again? I'm real self conscious about myself.

Just a quick update to let you guys know that my hair loss is still within 'normal' range. Which for me means, that although its between 50-150 per day (around 50 or less on normal days, around 150 or less on wash days) this is still far more than I used to lose per day. But certainly an enormous improvement from 500-800 per day!

I still do not count my hairs every day, only during my shower and it is always around the 100 mark in the shower, usually lower though. There isn't enough to bother counting on normal days.

It's 'only' been almost 6 months since my shedding started, so I'm not sure if it will taper off from here or wether it will get worse again, but fingers crossed this is almost the end for me!

I am still seeing new growth all over my scalp, it actually looks really funny right now because when I part my hair I have hundreds of one inch hairs down my part which stick right up! So yeah, still got the longer new hairs and then the even newer inch long hairs. Really encouraging progress!

My shedding started I think 6 weeks in to my course, I continued to the end though... here is what I have done to help, in case anybody is wondering:

• First of all, I started hair supplements immediately after my accutane course treatment ended. these made me very ill and caused me to throw up every day, so I had to stop them after about 2/3 weeks. I haven't returned to them since (course ended in July)
• I started eating a (slight) surplus of calories, including more red meat. It was difficult for me to eat a surplus of calories because I always work hard to maintain my figure, I have probablygained a few pounds but hey, my hair is coming back. I eat slightlymore calories in order to consume more nutrients, as I was unable to get them from supplements due to the sickness
• Important to note that before and during my accutane course I was not eating enough calories. I was at a low (but healthy) weight but when you eat under your maintenance calories your body cannot possibly get the nutrients that it needs. This is a HUGE contributing factor when it comes to hair loss, hence why otherwise healthy people can get hair loss from dieting/cutting calories.If you are under eating, your hair is not getting the nutrients that it needs. Youcouldsupplement these nutrients, but you might find that like me, your body cannot handle it after accutane
• Continued to see my hairdresser for trims every 10 weeks!

And I think thats it.. feel free to ask any questions and I will come back with another update in a few weeks!

Thank you awills.. so great to hear that your shedding is normalising. Please keep updating every few weeks! Here is my log/where I am posting about my TE

Hi guys! AnotherPOSITIVE update from me regarding hairloss! It has continued to slow up, in fact I'd say it's probably back to normal now. I just washed my hair for the first time since Wednesday (it's Sunday while I write this) and I only lost 37 hairs in the shower. I only actually counted them so I could come and tell you guys the good news!

The new hair growth is insane; there are hundreds of new hairs absolutely everywhere, hardly any of them are long enough to go up in my pony tail or a bun though, so they stick out everywhere and my hair looks a real mess unless its down. I am constantly getting more and more new hairs, and despite how silly they look I am very grateful!

I still continue to see my hairdresser every 10 weeks for trims, incase anyone is wondering.

As always, any questions please feel free to ask. Hope everyone is getting on ok!