chicanery

My (F19) accutane telogen effluvium journey (PICS)

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Hey guys,

I’m a 19 year old girl and went on a very successful Accutane course of 40mg from December 2015 -August 2016. I don’t regret it and adore my current skin, but hair loss was always the ONE THING I didn’t want to experience. I was happy to risk the other side effects, even liver damage. What I didn’t want to do, however, was trade in one aesthetic problem for another.

I started experiencing telogen effluvium hair loss in June (it was then that I started shedding moderate amounts of hair with bulbs). This got a bit heavier in July, and I really began to hate washing my hair because it was traumatic to see such loss. I avoided brushing my hair but generally tried to ignore it.

In August, the shedding got extremely heavy. I would shed hair everywhere I went, and I’d brush my hair and see 80 hairs in the brush. It was horrible and I prayed it was peaking and would soon stop.

September/October were absolute hell (it’s the 2nd of November today).  Up until September, I didn’t notice visible thinning. That’s how I coped over the summer – I was shedding like mad, but my hair still looked lovely and luscious. Half way through September, my hair started looking much thinner. When wet, it looked horrible.

Every time I washed it in Sept/Oct, I would lose about 250 hairs and then literally 400 hairs for 2 days afterwards. As my oil had come back at this point, I had to wash it at least every 5 days, resulting in regular trauma. I would sit in class, feel my pony tail and just pull out 40 loose hairs every hour. So, so horrible.

Now, at the beginning of November? My parting has doubled in width.  It's not terrible bit it's terrifying to me. You’re probably here to see whether accutane TE gets to the point of “embarrassing thinness”. The truth is I don't know, and that's what I have tried to find out online, in vain. I guess we will see what my hair is like in March! 

I want to stress that I don’t have “thin” hair. I am lucky that I had a lot of fine hair to start with, so I have decent scalp coverage still and a normal looking ponytail. You would see me and think I had nice hair, but I have lost 1/3 of my hair at least. And I’m still shedding heavily.

I think the shedding is now less heavy than it has been these past two months, but who knows.

REGROWTH: I checked my scalp today and am delighted to say that I have lots of 1-3inch hairs dotted around the place. They seem very fine and will obviously take months and months to grow out to the length of my others, but they will offer scalp coverage. I DON’T seem to be losing these short hairs, so (fingers crossed) hopefully I don’t have chronic TE. I am terrified to say anything now in case my condition worsens but maybe, just maybe, these past 4 months have been the worst of my TE and the shedding will slowly stop now over a few months.

I will add pics soon and document this entire process... I promise I won't disappear. There is nowhere near enough information on Accutane TE out there, especially not posts from females who absolutely adored their former hair. It all seems to be guys questioning whether they have TE or genetic balding.

I can't believe that my hair still looks like "nice hair" given I've shed so terribly for months. What I will say is that I am never, ever risking hair loss again. This will put me off ever meddling with the contraceptive pill, antidepressants, etc. Might sound extreme, but everything’s relative, and this is one thing that I was never prepared to deal with, and will hopefully never deal with again.

Edited by chicanery

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6th of November - Ugh, I hate washing my hair. Here it is, 3 months into heavy heavy shedding. Praying it stops in the next 2ish months, or at least considerably slows down. I mean, how long can it peak for? My parting has tripled. 

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Thanks for posting pics.  TBH I don't think your hair looks thin, nor does your part look abnormally wide.  I've seen much worse, on ppl who probably wouldn't say anything's wrong w their hair.  Do you really think you lost 1/3 of your hair?  IMO if that was the case, your hair would be much thinner...Do you have any before pics to compare?

From your previous posts, the number of hairs you say you've been loosing, and the alarm at which you've stated your situation, one would think your hair was much thinner...again, it looks normal to me.  I suppose the only way to really judge it is with a before pic...can you post one?  What has your dermatologist said?  Do they agree w your assessment of the situation?

What does everyone else think?

Edited by Derek C
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Hey -thanks for the comment, it's made me feel considerably better. However, my hair is SO much thinner than it was before. I have lost literally a 1/3, maybe more but I don't want to think about that. My derm agrees that I have a bad case of TE but is very cagey about the whole topic, as he frAnkly lied to each and told me that TE was v rare on accutane. Now that I understand what TE is, I consider it a reasonable bodily response to a very, very harsh "shock" to the  system. I don't know the stats,  but it's definitely  not some rare, elusive side effect. 

Sadly, I don't have before pics, but my hair was strikingly thick and luscious. Now it is average/thin. 

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Disgusted at this side effect - I just washed my hair and lost more than I've ever lost at once in the shower.  I'm now pulling handfuls loose hairs out every time i touch my head. How long can TE peak for? Can someone give me some anecdotal evidence... I've had heavy hair loss for 3-4 months.. when can I expect it to slow down?

I have a lot of regrowth, some of which I am holding up in the second pic. It seems to be coming in curly, for some absurd reason, but that's the last thing I'm worried about. Is this regrowth likely to stop me looking completely bald in future months?

What do you guys think of my situation - 3/4months into hairloss, am I completely fucked? 

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Edited by chicanery

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23yo female - I quit accutane in March 2016 and am still losing hair. My hair is much thinner than yours. I miss MY hair SO much. I started Rogaine two weeks ago as recommended by my derm to help speed up regrowth and hopefully slow the shedding down.

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On 11/18/2016 at 0:11 AM, lovemydogs said:

23yo female - I quit accutane in March 2016 and am still losing hair. My hair is much thinner than yours. I miss MY hair SO much. I started Rogaine two weeks ago as recommended by my derm to help speed up regrowth and hopefully slow the shedding down.

 
Hi - so sorry to hear that youre still losing hair so long after Accutane. Are you losing the regrowth as well, suggesting that you have something worse than acute TE (maybe chronic TE)? Or do you think you have a bad case of acute TE that will soon end? Is the shedding slowing at all?

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Right.. terrible news. I just washed my hair and lost 450 hairs.. was pulling them out like I was throughout September/October. Just as I thought I was over the peak of heavy shedding.

And, the worst part - I lost a significant amount of REGROWTH. The regrowth has been the only thing that's kept me going.. I have a lot of small 1-4 inch hairs around the top of my head. 

Now that I'm losing these, I feel like my situation is much worse than I thought it was. My derm promised me that even though the Accutane TE can seem traumatic, you only ever lose a set percentage of full grown anagen hairs that enter the telogen phase during the accutane course and consequently fall out. Now that I'm losing short hairs? Who knows what my situation is or  what this drug has done to my hair. My god, I can't put how upset I am into words. I am utterly hopeless now. 

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Also - can ANYONE tell me why my regrowth is coming in curly when I have had **dead straight** hair my entire life? I feel like accutane affects the follicles in serious ways that derms either don't know about or don't release information about. What could be going on?

Edited by chicanery

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This is affecting me immensely. Planning on cutting 3-4 inches off my hair now, but terrified of going to hairdressers because them roughing it up will cause me to lose hundreds and hundreds of hair. Honestly, if this heavy shedding increases and doesn't stop my hair will be ridiculously thin by spring/summer. Now, it isn't noticebly "thin" thin, but looks bad when wet. 

Have lost lots of 2-4 inch regrowth hairs today. That's the worst part :(

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On November 19, 2016 at 6:29 AM, chicanery said:
On November 17, 2016 at 4:11 PM, lovemydogs said:

23yo female - I quit accutane in March 2016 and am still losing hair. My hair is much thinner than yours. I miss MY hair SO much. I started Rogaine two weeks ago as recommended by my derm to help speed up regrowth and hopefully slow the shedding down.

 
Hi - so sorry to hear that youre still losing hair so long after Accutane. Are you losing the regrowth as well, suggesting that you have something worse than acute TE (maybe chronic TE)? Or do you think you have a bad case of acute TE that will soon end? Is the shedding slowing at all?
I have now been on the romaine for almost a month. I am shedding way more on romaine-which i read is often a good sign that it is working. Right now though, it looks terrible and I'm hoping for some regrwoth and slowed shedding in the coming months. I honestly don't know what the deal is. I have seen so many doctors and dermatologists. I had a scalp biopsy done, saw a specialist at UCSF...no info really. It may come back or it may not. It has only gotten worse and any regrowth i have isn't enough to keep it from looking thinner and thinner as months pass. 
On November 21, 2016 at 1:22 PM, chicanery said:

This is affecting me immensely. Planning on cutting 3-4 inches off my hair now, but terrified of going to hairdressers because them roughing it up will cause me to lose hundreds and hundreds of hair. Honestly, if this heavy shedding increases and doesn't stop my hair will be ridiculously thin by spring/summer. Now, it isn't noticebly "thin" thin, but looks bad when wet. 

Have lost lots of 2-4 inch regrowth hairs today. That's the worst part :(

Are you on birth control? I only ask because I am and I wonder if that could play a role in us not recovering...

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13 hours ago, lovemydogs said:
I have now been on the romaine for almost a month. I am shedding way more on romaine-which i read is often a good sign that it is working. Right now though, it looks terrible and I'm hoping for some regrwoth and slowed shedding in the coming months. I honestly don't know what the deal is. I have seen so many doctors and dermatologists. I had a scalp biopsy done, saw a specialist at UCSF...no info really. It may come back or it may not. It has only gotten worse and any regrowth i have isn't enough to keep it from looking thinner and thinner as months pass.  Are you on birth control? I only ask because I am and I wonder if that could play a role in us not recovering...
 
Ugh damn, I'm so sorry. I am PRAYING mine stops in the next 2-3 months, I honestly don't know how I'll deal with terribly thin hair. And no, I'm not on birth control but it's true that BC causes bad hairloss in a significant amount of people, usually in the form of TE after coming off it, but sometimes whilst on it to. There are people that go on "hair-friendly" pills like Yasmin and claim to have lost 2/3 of their hair. However, if you didn't have hairloss before accutane/going of accutane, I don't see why it would be the BC. 
 

What frustrates me SO much about this is that I like to fully understand any singificant medical issue I am experiencing, but that is impossible with this condition. When I started losing my hair heavily after Accutane, I was sure that my TE was acute - that I was losing a fixed number of long hairs that had been put into the telogen phase by the drug. I was scared and knew it would be rough, maybe even 60% of my hair, but I was sure that any regrowth would slowly give my scalp its thickness back and that the shedding would stop, because the trigger had happened months before.  However, here I am losing hundreds of hairs of all lengths, with weird regrowth that is either oddly dark and curly or fine and whispy, and I'm losing most of THAT too. 

All this suggests to me that there's possibly some miniaturisation, and that my anagen cycles have been shortened, hopefully not permanently but maybe permanently ?? It makes you wonder what accutane is actually doing.. whether the lack of sebum has permanently killed my hair cells, whether it's messing with my thyroid, WHY I'm producing odd regrowth that I'm losing. It does NOT look good. And, what worries me, is that it is not at all consistent with the "acute TE" info that the derms give out. Accutane hasn't just "shocked " my system, it's fucked up my hair.  

Now my derm always tells me that I knew the risks, that accutane causes hairloss, but I was WILLING to put up with a short, moderate TE shed that would be over in 4 months and that I'd recover from in a year. And that is what I was lead to believe that accutane caused.. a shock to the system, acute TE but no actual long-lasting changes to the fundamental hair cycle and hair growth process. 

I just feel so hopeless. I am trying so hard to be optmistic, but I am so sure I'm gonna be here in March, posting pictures of my visibly balding head. There's only so much hair you can lose before it becomes visibly terrible, and I'd say I'm 1-3 months away from that point if my hairloss continues like it is (even though some of my pics don't look too bad, I have lost SO much. My hair was so gorgeous before). 

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On November 30, 2016 at 2:06 AM, chicanery said:
Ugh damn, I'm so sorry. I am PRAYING mine stops in the next 2-3 months, I honestly don't know how I'll deal with terribly thin hair. And no, I'm not on birth control but it's true that BC causes bad hairloss in a significant amount of people, usually in the form of TE after coming off it, but sometimes whilst on it to. There are people that go on "hair-friendly" pills like Yasmin and claim to have lost 2/3 of their hair. However, if you didn't have hairloss before accutane/going of accutane, I don't see why it would be the BC. 
 

What frustrates me SO much about this is that I like to fully understand any singificant medical issue I am experiencing, but that is impossible with this condition. When I started losing my hair heavily after Accutane, I was sure that my TE was acute - that I was losing a fixed number of long hairs that had been put into the telogen phase by the drug. I was scared and knew it would be rough, maybe even 60% of my hair, but I was sure that any regrowth would slowly give my scalp its thickness back and that the shedding would stop, because the trigger had happened months before.  However, here I am losing hundreds of hairs of all lengths, with weird regrowth that is either oddly dark and curly or fine and whispy, and I'm losing most of THAT too. 

All this suggests to me that there's possibly some miniaturisation, and that my anagen cycles have been shortened, hopefully not permanently but maybe permanently ?? It makes you wonder what accutane is actually doing.. whether the lack of sebum has permanently killed my hair cells, whether it's messing with my thyroid, WHY I'm producing odd regrowth that I'm losing. It does NOT look good. And, what worries me, is that it is not at all consistent with the "acute TE" info that the derms give out. Accutane hasn't just "shocked " my system, it's fucked up my hair.  

Now my derm always tells me that I knew the risks, that accutane causes hairloss, but I was WILLING to put up with a short, moderate TE shed that would be over in 4 months and that I'd recover from in a year. And that is what I was lead to believe that accutane caused.. a shock to the system, acute TE but no actual long-lasting changes to the fundamental hair cycle and hair growth process. 

I just feel so hopeless. I am trying so hard to be optmistic, but I am so sure I'm gonna be here in March, posting pictures of my visibly balding head. There's only so much hair you can lose before it becomes visibly terrible, and I'd say I'm 1-3 months away from that point if my hairloss continues like it is (even though some of my pics don't look too bad, I have lost SO much. My hair was so gorgeous before). 

"fucked up my hair" - perfectly summarizes what I feel like accutane has done to my hair. Yea my derm has said the SAME thing. For months i got "don't worry it will grow back within a year" and now i get "we will just have to wait and see what happens". Ugh!!

Also, I started ortho tri cyclen (which is supposed to be hair friendly) a month before starting accutane. I worry that it could be the BC...but I am afraid to stop taking it because if i am wrong and quit it i will probably trigger another TE going off of it.
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On 12/3/2016 at 4:40 AM, lovemydogs said:
"fucked up my hair" - perfectly summarizes what I feel like accutane has done to my hair. Yea my derm has said the SAME thing. For months i got "don't worry it will grow back within a year" and now i get "we will just have to wait and see what happens". Ugh!!

Also, I started ortho tri cyclen (which is supposed to be hair friendly) a month before starting accutane. I worry that it could be the BC...but I am afraid to stop taking it because if i am wrong and quit it i will probably trigger another TE going off of it.
 
Yeah that's such a tricky situation... and it must be frustrating, because even though I'd say your hair loss is down to Accutane, who knows if your slow recovery is due to BC/the BC is causing a constant but low-level amount of shedding. Are you losing a lot of regrowth too? That is what kills me... every time I shower I lose about 50 tiny 1-3cm hairs. I mean, derms can deny all they want but this points to chronic TE or even a permanent change to the length of anagen cycles, both of which will leave me thinning badly for years. I canot see how this shedding is gonna stop in the next couple of months. 

I know this is a sensitive topic, but at this point, is your hair still "normal" or is it obvious that you're suffering from a hair loss issue? I don't mean compared to your previous hair, but in terms of other comparing urself to other women/being on public transport etc. It's easy to forget this but a LOT of people naturally have very thin hair.. I can think of several female friends I have that are in the peak of health without any hormonal/hair issues, and they have glossy, nice hair, but hair that is way thinner than mine is even now. One of the prettiest people I know has really fine, thin blonde hair that forms a tiiiny ponytail when tied up. 

Even though this journey is heartbreaking and absolutely the worst thing I've been through tbh, it massively helped me to "come out" to myself as someone with a hair issue. Sure, it makes me cry to see pics of my hair last spring, but now I've given up on being someone with that "lovely hair", bc I simply no longer have it. Now, I'm okay with having average to slightly thin hair, as long as I look "normal". As long as you wouldn't look at me and think I had a severe balding issue. I am p sure that I'm 2-3 months of heavy shedding taway from looking like I'm visibly balding.  Just have to PRAY that is slows down. 

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2 hours ago, chicanery said:
Yeah that's such a tricky situation... and it must be frustrating, because even though I'd say your hair loss is down to Accutane, who knows if your slow recovery is due to BC/the BC is causing a constant but low-level amount of shedding. Are you losing a lot of regrowth too? That is what kills me... every time I shower I lose about 50 tiny 1-3cm hairs. I mean, derms can deny all they want but this points to chronic TE or even a permanent change to the length of anagen cycles, both of which will leave me thinning badly for years. I canot see how this shedding is gonna stop in the next couple of months. 

I know this is a sensitive topic, but at this point, is your hair still "normal" or is it obvious that you're suffering from a hair loss issue? I don't mean compared to your previous hair, but in terms of other comparing urself to other women/being on public transport etc. It's easy to forget this but a LOT of people naturally have very thin hair.. I can think of several female friends I have that are in the peak of health without any hormonal/hair issues, and they have glossy, nice hair, but hair that is way thinner than mine is even now. One of the prettiest people I know has really fine, thin blonde hair that forms a tiiiny ponytail when tied up. 

Even though this journey is heartbreaking and absolutely the worst thing I've been through tbh, it massively helped me to "come out" to myself as someone with a hair issue. Sure, it makes me cry to see pics of my hair last spring, but now I've given up on being someone with that "lovely hair", bc I simply no longer have it. Now, I'm okay with having average to slightly thin hair, as long as I look "normal". As long as you wouldn't look at me and think I had a severe balding issue. I am p sure that I'm 2-3 months of heavy shedding taway from looking like I'm visibly balding.  Just have to PRAY that is slows down. 
I definitely lose short hairs as well!

My scalp biopsy said i had a "differential diagnosis of telogen effluvium and alopecia are at (diffuse)". I found this really interesting and have only read a couple studies of accutane causing autoimmune forms of alopecia. 

I am way too afraid to stop the birth control. Honestly-my hair probably looks like someone with just very thin hair. However when it is wet or a bit oily, I can see my scalp. So scary and devastating. I am at a point where I am researching wig options and trying to stay positive about that possibility. 

It seems like you have been able to reframe the situation in a positive way. If it continues to get worse, what are your plans for coping/dealing?
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On 12/4/2016 at 7:23 PM, lovemydogs said:
I definitely lose short hairs as well!

My scalp biopsy said i had a "differential diagnosis of telogen effluvium and alopecia are at (diffuse)". I found this really interesting and have only read a couple studies of accutane causing autoimmune forms of alopecia. 

I am way too afraid to stop the birth control. Honestly-my hair probably looks like someone with just very thin hair. However when it is wet or a bit oily, I can see my scalp. So scary and devastating. I am at a point where I am researching wig options and trying to stay positive about that possibility. 

It seems like you have been able to reframe the situation in a positive way. If it continues to get worse, what are your plans for coping/dealing?
 
4

I had no idea accutane could cause alopecia areata, and that diagnosis still sounds quite vague.

Ugh, I'm trying to stay positive because there is literally nothing I can do, but it's so hard and I literally spend about 1hr a day frantically googling about TE, reading the same 20-30 forum posts, all of which lack any follow up posts or news on the person's case. I'm only feeling slightly less bad about my current hair because I realise that I am still within the "normal" bracket. So, instead of breaking down and crying about my hair now, I'm crying w fear about how it will look in 3 months if this shedding doesn't slow down. :((( It's hard not to feel a huge sense of injustice, though. I have honestly lost 50% now... comparing my ponytail size to how it was, and pics etc. 

In terms of dealing it, I guess I'll have to use those hair fibres/powders if my scalp starts showing through.. but if it gets THAT bad, I will be so depressed.  Edited by chicanery

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On December 5, 2016 at 2:32 PM, chicanery said:

I had no idea accutane could cause alopecia areata, and that diagnosis still sounds quite vague.

Ugh, I'm trying to stay positive because there is literally nothing I can do, but it's so hard and I literally spend about 1hr a day frantically googling about TE, reading the same 20-30 forum posts, all of which lack any follow up posts or news on the person's case. I'm only feeling slightly less bad about my current hair because I realise that I am still within the "normal" bracket. So, instead of breaking down and crying about my hair now, I'm crying w fear about how it will look in 3 months if this shedding doesn't slow down. :((( It's hard not to feel a huge sense of injustice, though. I have honestly lost 50% now... comparing my ponytail size to how it was, and pics etc. 

In terms of dealing it, I guess I'll have to use those hair fibres/powders if my scalp starts showing through.. but if it gets THAT bad, I will be so depressed. 

Yea I actually got a wig and am loving it haha. There are options out there but that doesn't make this experience any less devastating. Has your hair loss slowed down at all? Do you notice it fluctuates between high rates of sheds and normal rates of sheds?

I am 9 months post accutane and still losing hair. I have been using rogaine for one and a half months now and experiencing the "dread shed" as they call it-hoping rogaine will not make things worse...

By the 1 year mark post accutane I may consider switching or stopping my birth control if I am still losing hair. I would like to do that now just in case my birth control is affecting it, but I am honestly too scared to rock the boat or make anything worse.

I have read that accutane can trigger the onset of genetic hairloss/androgenetic alopecia/male or female pattern baldness. Do you have any fears that this may be a possibility for you? I am hoping a big NO for the both of us.

Stay strong!!!!
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On 12/12/2016 at 4:10 AM, lovemydogs said:

Yea I actually got a wig and am loving it haha. There are options out there but that doesn't make this experience any less devastating. Has your hair loss slowed down at all? Do you notice it fluctuates between high rates of sheds and normal rates of sheds?

I am 9 months post accutane and still losing hair. I have been using rogaine for one and a half months now and experiencing the "dread shed" as they call it-hoping rogaine will not make things worse...

By the 1 year mark post accutane I may consider switching or stopping my birth control if I am still losing hair. I would like to do that now just in case my birth control is affecting it, but I am honestly too scared to rock the boat or make anything worse.

I have read that accutane can trigger the onset of genetic hairloss/androgenetic alopecia/male or female pattern baldness. Do you have any fears that this may be a possibility for you? I am hoping a big NO for the both of us.

Stay strong!!!!
 
 
I honestly can't really tell - my hair does fluctuate between different rates of shedding, as some days are devastating and others are just quite bad, but in general I don't think it has slowed down much :((. 

Omg this is my worry!! My hairline really seems to be receding.. not drastically, but I have lost so much hair around there and can't see much regrowth! :/ i'm hoping it's just diffuse hairloss, however, that is more apparent at the front. I guess I'll see in a few months. 

Thanks.. I really hope your situaton sorts itself out or at least improves in the next efw months, and will def be checking up on ur journey!!!

Here's an update guys (14th of Dec 2016): As you can see, I still have a more or less "decent" head of hair. You wouldn't see me and think I had something serious wrong with me. However, I have gone from having extremely luscious thick hair to quite thin hair. The pic of me holding my ponytail shows ALL I have. I honestly had at least two, probably three times that amount before. I have lost SO much density, guys. I cna't stress that enough.

You can see my balding hairline and some short regrowth, along with how much my scalp shows through when I part my hair at any point on my head. I know this may look normal but it is extremely far from my normal, and I can only hope that more regrowth is gonna come in and actually GROW instead of falling out. 

The last pic, showing the central part of my hairline, is the worst . Of course I have no before pics to show you guys, but I can tell you that I have NEVER seen my hair looking anything like that before. 


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Edited by chicanery

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Update - blood tests came back and my iron ferritin levels are extremely low (at 11). My thyroid is working fine :).  I am a vegan and have v heavy, frequent periods so the iron issue was no surprise. I was supplementing with 15mg a day of iron, but I clearly need more and have been told to take 600mg a day in the form of iron pills.

Accutane has obviously caused the majority of my hair loss (the derm is not escaping that one so easily, lol), but maybe extremely low iron is causing all my regrowth to fall out. I'm so, so unhappy with this, though, as it will take at least 4 months to get my iron to 50-75, which my derm matter-of-factly told me is the range you need to reach for "normal hair growth". I'm amazed he never thought to test my blood for iron, given I had so many blood tests while on the drug.  I WISH i had thought to get tested and gone on iron over the summer, when my hair loss properly started.

Who knows whether I'd be suffering so much with my hair if my iron was in the 50-75 range before going on accutane. I mean, 11 is shocking lol. No wonder I'm severely tired the whole time and get so many headaches. All I can do is focus on upping my iron with these pills + continue eating protein. 

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On December 14, 2016 at 2:05 PM, chicanery said:
I honestly can't really tell - my hair does fluctuate between different rates of shedding, as some days are devastating and others are just quite bad, but in general I don't think it has slowed down much :((. 

Omg this is my worry!! My hairline really seems to be receding.. not drastically, but I have lost so much hair around there and can't see much regrowth! :/ i'm hoping it's just diffuse hairloss, however, that is more apparent at the front. I guess I'll see in a few months. 

Thanks.. I really hope your situaton sorts itself out or at least improves in the next efw months, and will def be checking up on ur journey!!!

Here's an update guys (14th of Dec 2016): As you can see, I still have a more or less "decent" head of hair. You wouldn't see me and think I had something serious wrong with me. However, I have gone from having extremely luscious thick hair to quite thin hair. The pic of me holding my ponytail shows ALL I have. I honestly had at least two, probably three times that amount before. I have lost SO much density, guys. I cna't stress that enough.

You can see my balding hairline and some short regrowth, along with how much my scalp shows through when I part my hair at any point on my head. I know this may look normal but it is extremely far from my normal, and I can only hope that more regrowth is gonna come in and actually GROW instead of falling out. 

The last pic, showing the central part of my hairline, is the worst . Of course I have no before pics to show you guys, but I can tell you that I have NEVER seen my hair looking anything like that before. 


FullSizeRender (5).jpgFullSizeRender (6).jpgFullSizeRender (7).jpgFullSizeRender (8).jpgIMG_5589.JPG

 

 

On December 15, 2016 at 11:18 AM, chicanery said:

Update - blood tests came back and my iron ferritin levels are extremely low (at 11). My thyroid is working fine :).  I am a vegan and have v heavy, frequent periods so the iron issue was no surprise. I was supplementing with 15mg a day of iron, but I clearly need more and have been told to take 600mg a day in the form of iron pills.

Accutane has obviously caused the majority of my hair loss (the derm is not escaping that one so easily, lol), but maybe extremely low iron is causing all my regrowth to fall out. I'm so, so unhappy with this, though, as it will take at least 4 months to get my iron to 50-75, which my derm matter-of-factly told me is the range you need to reach for "normal hair growth". I'm amazed he never thought to test my blood for iron, given I had so many blood tests while on the drug.  I WISH i had thought to get tested and gone on iron over the summer, when my hair loss properly started.

Who knows whether I'd be suffering so much with my hair if my iron was in the 50-75 range before going on accutane. I mean, 11 is shocking lol. No wonder I'm severely tired the whole time and get so many headaches. All I can do is focus on upping my iron with these pills + continue eating protein. 


Hey girl!

Thanks for checking in! That is so funny because when all of this started I got my blood work done too and the only thing "wrong" was low ferritin (13). I am a vegetarian. Doctor gave me iron supplements and checked my ferritin and iron every month for 4 months. My ferritin was raising but then my iron actually got too high and the doctor made me stop. So then he suggested trying to get it through my diet-he said heme iron from animal products is the best way to raise ferritin. I have been trying to incorporate some meat into my diet but it has been so hard given how much i love animals and dislike meat. I wonder if the ferritin could be part of the cause of our slow recovery/lack or loss of regrowth. 

Also, I have noticed my hair loss most in the front as well. It is scary because that can be a sign of early genetic hairless, however i do think with telogen effluvium it can just be more noticeable in those spots. Try to stay positive and keep checking in!

Update on me:
I have now been on minoxidil for almost 2 months, I am still shedding and haven't noticed much regrowth.
Also, I have decided to stop taking my birth control (ortho tri cyclen) because one of the side effects says "loss of scalp hair". This is kind of shot in th dark...quitting the pill is either going to make my hair improve or get worse. Only time will tell. I know telogen effluvium can be pretty common for women stopping the pill but I am trying to stay positive! I started birth control and accutane around the same time (November 2015). I figure this is worth a shot and I honestly don't like the idea of putting synthetic hormones in my body.

Wish me luck, haha! And keep checking in. :)
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19 hours ago, lovemydogs said:

 


Hey girl!

Thanks for checking in! That is so funny because when all of this started I got my blood work done too and the only thing "wrong" was low ferritin (13). I am a vegetarian. Doctor gave me iron supplements and checked my ferritin and iron every month for 4 months. My ferritin was raising but then my iron actually got too high and the doctor made me stop. So then he suggested trying to get it through my diet-he said heme iron from animal products is the best way to raise ferritin. I have been trying to incorporate some meat into my diet but it has been so hard given how much i love animals and dislike meat. I wonder if the ferritin could be part of the cause of our slow recovery/lack or loss of regrowth. 

Also, I have noticed my hair loss most in the front as well. It is scary because that can be a sign of early genetic hairless, however i do think with telogen effluvium it can just be more noticeable in those spots. Try to stay positive and keep checking in!

Update on me:
I have now been on minoxidil for almost 2 months, I am still shedding and haven't noticed much regrowth.
Also, I have decided to stop taking my birth control (ortho tri cyclen) because one of the side effects says "loss of scalp hair". This is kind of shot in th dark...quitting the pill is either going to make my hair improve or get worse. Only time will tell. I know telogen effluvium can be pretty common for women stopping the pill but I am trying to stay positive! I started birth control and accutane around the same time (November 2015). I figure this is worth a shot and I honestly don't like the idea of putting synthetic hormones in my body.

Wish me luck, haha! And keep checking in. :)
 
Hey!!  Would you consider taking maybe 100mg of iron a day permanently, just once in the morning? I v much suspect that you need to actually supplement, since you're mainly veggie and are clearly prone to iron deficiency and you obvs don't wanna be exacerbating your hair issue! :) It is a pain though - and I hate that I can no longer drink coffee in the morning now that I'm taking iron, bc it cuts the absorption so much. It’s really good that you can force yourself to eat red meat, because heme iron is sooo much more easily absorbed than non-heme. Even though it’s so against my love for animals, I WISH I could force myself to eat a couple of steaks a week right now, just in terms of upping my iron to help my hair.. but I physically could not do it ://. I'm taking 600mg of iron a day w vitamin C, so I'm hoping my levels up quickly. Then, I rly wanna stay on about 100-200mg (basically for life) because I clearly have some issues with iron/my diet.
 

Omg, good luck coming off the pill! This must be so scary for you, but I guess it’s a nice idea that your hormones will be returning to their natural levels. Plus, if you’re gonna suffer from post-BC telogen effluvium, maybe it’s better that it happens now instead of in 4 years when your hair will (hopefully) be much thicker again?

 

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On December 20, 2016 at 9:32 AM, chicanery said:
Hey!!  Would you consider taking maybe 100mg of iron a day permanently, just once in the morning? I v much suspect that you need to actually supplement, since you're mainly veggie and are clearly prone to iron deficiency and you obvs don't wanna be exacerbating your hair issue! :) It is a pain though - and I hate that I can no longer drink coffee in the morning now that I'm taking iron, bc it cuts the absorption so much. It’s really good that you can force yourself to eat red meat, because heme iron is sooo much more easily absorbed than non-heme. Even though it’s so against my love for animals, I WISH I could force myself to eat a couple of steaks a week right now, just in terms of upping my iron to help my hair.. but I physically could not do it ://. I'm taking 600mg of iron a day w vitamin C, so I'm hoping my levels up quickly. Then, I rly wanna stay on about 100-200mg (basically for life) because I clearly have some issues with iron/my diet.
 

Omg, good luck coming off the pill! This must be so scary for you, but I guess it’s a nice idea that your hormones will be returning to their natural levels. Plus, if you’re gonna suffer from post-BC telogen effluvium, maybe it’s better that it happens now instead of in 4 years when your hair will (hopefully) be much thicker again?

 

 

 

 

 


Yea I never thought I would be physically able to eat meat, but recently I have been able to sneak it into my diet. It is so hard though and I have to not think about it and stay distracted, etc. Whoa 600 is a lot of iron-hoping your ferritin levels rise soon! and it is good you are taking it with vitamin c to increase the absorption. Isn't it funny how we have become experts on this stuff now after countless hours researching for solutions? 

Haha you are so right about the possible TE from birth control being better off happening now than in the future sometime. Hoping i don't have any hair loss or acne returning. :) How is your skin doing post accutane?
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Hi, There is nothing called TE from accutane .. your problem is that the med is till now in your body , you need too remove it .. hope you recover soon :)

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On 12/22/2016 at 2:40 AM, lovemydogs said:

Yea I never thought I would be physically able to eat meat, but recently I have been able to sneak it into my diet. It is so hard though and I have to not think about it and stay distracted, etc. Whoa 600 is a lot of iron-hoping your ferritin levels rise soon! and it is good you are taking it with vitamin c to increase the absorption. Isn't it funny how we have become experts on this stuff now after countless hours researching for solutions? 

Haha you are so right about the possible TE from birth control being better off happening now than in the future sometime. Hoping i don't have any hair loss or acne returning. :) How is your skin doing post accutane?
 
 
I have some acne coming back, but it is in no way "taking over" like my acne before accutane. I am taking spearmint capsules (2 times a day) because I am certain my acne is hormonal, and spearmint is really meant to lower testosterone levels. Idk if this will even work, but figured I needed something to help my acne internally.. it's more for peace of mind than anything else lol. I just HOPE that the spearmint won't contribute to another cycle of hair loss, but I've one enough reading and I really think that this is unlikely. So I'm gonna kep taking it lol. How is your skin???

And ahahah so true about us becoming experts. I wish I could approach my subjects with this much dedication and thorough research lool
On 12/22/2016 at 11:29 AM, Hairloss2000 said:

Hi, There is nothing called TE from accutane .. your problem is that the med is till now in your body , you need too remove it .. hope you recover soon :)

 
 
I see this opinion a lot but are you sure? How would I "remove it"? I personally believe that it is out of my body as I am experiencing no dryness/any of the other side-effects. I think hair follicles just take a while to recover.  Edited by chicanery

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End of December, and I'm shedding extremely heavily. :( The shedding seems to be getting worse and worse, back to how bad it was in September/October. I now fully regret going on accutane, hate how my hair looks in a ponytail and am terrified for the future months. Really don't know what to do. This is showing NO sign of stopping or slowing down, and I'm nearly 5 months off accutane.

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On December 23, 2016 at 5:09 AM, chicanery said:
I have some acne coming back, but it is in no way "taking over" like my acne before accutane. I am taking spearmint capsules (2 times a day) because I am certain my acne is hormonal, and spearmint is really meant to lower testosterone levels. Idk if this will even work, but figured I needed something to help my acne internally.. it's more for peace of mind than anything else lol. I just HOPE that the spearmint won't contribute to another cycle of hair loss, but I've one enough reading and I really think that this is unlikely. So I'm gonna kep taking it lol. How is your skin???

And ahahah so true about us becoming experts. I wish I could approach my subjects with this much dedication and thorough research lool I see this opinion a lot but are you sure? How would I "remove it"? I personally believe that it is out of my body as I am experiencing no dryness/any of the other side-effects. I think hair follicles just take a while to recover. 
9 hours ago, chicanery said:

End of December, and I'm shedding extremely heavily. :( The shedding seems to be getting worse and worse, back to how bad it was in September/October. I now fully regret going on accutane, hate how my hair looks in a ponytail and am terrified for the future months. Really don't know what to do. This is showing NO sign of stopping or slowing down, and I'm nearly 5 months off accutane.


Hey there!

I am so sorry you are still dealing with shedding. I am 9+ months post accutane and still losing more hair than normal. I am reaching almost 2 months using minoxidil and think that it may be helping with regrowth, not really sure yet. As for quitting birth control, my skin is doing well so far (I am using topical retina a and I think that is really helping me to maintain clear skin). I guess I just have to be patient and keep waiting to see what the future months hold. Having fun with wigs, which gives me great comfort in knowing that if I never recover I will be ok and be able to still have the hair I once had (even if it isn't growing out of my head, haha). Yea just really trying to lower stress levels at this point. Running consistently, enjoying my life, etc. Keep me posted on your experiences! I have never heard of spearmint causing or exacerbating hairless so I think you are good to go with that!! :)

I am currently only taking zinc, probiotic, ashwaganda, and b complex. And then I use minoxidil topically on scalp at night. It feels so good to finally not be taking any meds. This last year I have gone from birth control to accutane to antibiotics...my poor body needs some time to heal and get back to its natural, healthy state.

Happy Holidays!
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