Severe Accutane Telogen Effluvium - Need Opinions On My Pics + Stories

[fairlgirl]

Hey guys,

I took Accutane for 8 months, and have been off it for 5 months. I'm F18 and I have been losing hair heavily (200-300 a day) for about 8 months.. so it started towards the end of my Accutane course.

I have low ferritin but am taking iron, as well as all other obvious vitamins.

I'm utterly devastated. I have lost about 60% of my hair, and constantly lose short regrowth. I'm at a point where I am just beginning to realise that my hair is becoming "thin", and lifeless. I had such gorgeous, thick, healthy hair and it's terrifying me that it is still falling out steadily with no signs of improvement. I am aware that this is just a bad Telogen Effluvium that will take time to sort itself out, and that none of you can medically help me, but this is so warped within my own head that I am unable to judge my own situation. So I'd really appreciate you guys commenting on my pics.

1. How far off am I from looking like my hair is obviously thin/scalp showing? I am still just about able to go out and feel "normal".

2. Based on these pics and your experiences with Telogen Effluvium, do you guys think that I will be much worse by summer, or be decently improved by then? I am asking bc I have no idea how bad a "bad telogen effluvium" typically gets.

3. Once your hair starts to improve and regrowth doesn't keep falling out, how long does it take to feel like your scalp is more covered?

I'm just so so scared.. all I want is for this to stop now. I won't mentally cope with it getting visibly thin to the extent that I don't want to go out. Never risking hair loss with a medication again, can't believe I even have this issue

Thanks so much, I really appreciate any replies x

PICS (hair is wet/drying):

 

[fairlgirl]

Sorry to bump and I know we are all in our own depressing hair loss situations.. but what do you think of these pics?

 

[buckthorn]

you still have very thick hair. you've been off it for five months. your Telogen Effluvium should subside in the next few months and your beautiful, gorgeous thick hair will grow back, unlike most of us on here... that's probably why no one is responding. Go to a dermatologist if you're overly concerned.

 

[rclark]

It's true. Telogen effluvium is completely reversible.

Here's a great seven page article on it, that you might like!

But just to put your mind at ease, fairlgirl, here's where
it talks about reversible:

http://www.webmd.com/skin-problems-and-treatments/hair-loss/effluviums#2

You would probably like this, as it has a lot of details.

 

[Sjw1582]

View attachment 47180 View attachment 47177 View attachment 47178 View attachment 47179[/QUOTE]

Sorry to bump and I know we are all in our own depressing hair loss situations.. but what do you think of these pics?

Hi fairlgirl

I am new to the forum, and have not done this before so please bear with me.

I TOTALLY understand what your going through and I too almost feel like I'm not worthy to be posting on forums such as these as I do still have my hair (for now) and there are so many brace people facing so much worse everyday. However everybody's experience is just as devastating and personal to the individual.

I want to share my experiences with you as they are very similar, perhaps offering some support will help let you and myself and others who may read it feel at least like we are not the only ones feeling this way.


My hair loss started 17 months ago, I've been through bouts of Telogen Effluvium before after child birth and various stresses however at this current time in my life and for the past 3 years ive never been happier or more settled (with the exception of the hair) I had a contraceptive Mireya coil fitted in April 15, by Sep 15 I noticed my hair was falling big time by the October I went to see a tricologist who prescribed me minoxidil. I started using this and a few months later the shedding stopped. Great, it was reversible and could grow back the hair I lost. For 4 months my hair shed had practically stopped my hair was soft again and I looked after it well, then for no apparent reason in may 16 it started again and this time hasn't stopped. When Telogen Effluvium is prolonged it's called CTE chronic telegenic effluvium and I have understood this to go on for years and years in some cases. :,,(

I did have some blood work done and it revealed a low but normal ferritin -so I supplemented with iron and liquid iron
Low b12 - supplemented, and also low vitamin d which again i supplemented until my levels were optimal again.
I was pinning all my hopes on the fact it would stop after a few months.but here I am still losing 300 odd hairs a day I'm amazed I have any hair left. I estimate to have lost 60% density and have had to find ways to hide thinned ares with fibres sprays and root powders.my parting is wider and the condition is straw like lank and also going rather grey. I have also now developed Androgenetic Alopecia off the back of it and now have to deal with that for life.
My hair was also, long and thick soft and shiny, it made me feel beautiful.
I had thought perhaps it was the contraceptive coil causing it and so had hormone tests (normal) and then removed it 2 months ago. The shed has since sped up and I am feeling like I can't cope anymore.

Some days I put on a brave face and mask how I feel - I have 3 kids who need me to be strong. Other days I simply can't cope I cry all day and contemplate shaving my head! Irrational I'm sure and that's how I feel - emotional irrational obsessive and anxious. Catch 22 as this causes more stress.
I'm 34, My husband is younger than me and is surrounded by lovely young women with luscious hair, it's affecting our relationship as there's nothing he can do to help and affecting me socially some days I don't want to go out or see people.

I could go on but this is a long post SORRY, the hardest part of all of this is the not knowing, when it will stop, if it will stop that's what I struggle with the most. I also have to remind myself that there are worse things to be going through in life, Although at times that's of little comfort.

stay strong xx

 

[fairlgirl]

Hey guys, just updating - I am now 8+ months post-Accutane and this is only worsening. It is in NO way resolving itself like a drug-induced Telogen Effluvium should. All my levels are fine. I don't know what's happening to me. Still losing tiny short 1cm hairs, 2 inch hairs.. my hair cannot stay in the anagen phase. I've lost 60-70%. Completely devastated and scared for the future.

 

[fairlgirl]

 

[fairlgirl]

If any of you know - how long will it take for this awful patch to fill in? I'm sorry, I know that a lot of you do have permanent genetic hair loss so may see my situation as petty, but I have still lost at least 2/3 of my thick hair and I am young and really scared. I'd love to know if this sort of bald patch will take 4 months to fill in or 2 months.

 

[tomcat]

If any of you know - how long will it take for this awful patch to fill in? I'm sorry, I know that a lot of you do have permanent genetic hair loss so may see my situation as petty, but I have still lost at least 2/3 of my thick hair and I am young and really scared. I'd love to know if this sort of bald patch will take 4 months to fill in or 2 months.

no one here really can help u pls go visit doctor browsing hairloss forums can give u extra hairloss believe me alot of negativity here ... just stick with ur meds and have a faith ...

 

[hairblues]

You have to go to a dermatologist who specializes in Alopeca and you have to see an endochronoligsst if you have not already for a full blood workup--not the same as a Primary will give.

We cant really help you until you are properly diagnosed.

 

[rclark]

Hey guys,

I took Accutane for 8 months, and have been off it for 5 months. I'm F18 and I have been losing hair heavily (200-300 a day) for about 8 months.. so it started towards the end of my Accutane course.

I have low ferritin but am taking iron, as well as all other obvious vitamins.

I'm utterly devastated. I have lost about 60% of my hair, and constantly lose short regrowth. I'm at a point where I am just beginning to realise that my hair is becoming "thin", and lifeless. I had such gorgeous, thick, healthy hair and it's terrifying me that it is still falling out steadily with no signs of improvement. I am aware that this is just a bad Telogen Effluvium that will take time to sort itself out, and that none of you can medically help me, but this is so warped within my own head that I am unable to judge my own situation. So I'd really appreciate you guys commenting on my pics.

1. How far off am I from looking like my hair is obviously thin/scalp showing? I am still just about able to go out and feel "normal".

2. Based on these pics and your experiences with Telogen Effluvium, do you guys think that I will be much worse by summer, or be decently improved by then? I am asking bc I have no idea how bad a "bad telogen effluvium" typically gets.

3. Once your hair starts to improve and regrowth doesn't keep falling out, how long does it take to feel like your scalp is more covered?

I'm just so so scared.. all I want is for this to stop now. I won't mentally cope with it getting visibly thin to the extent that I don't want to go out. Never risking hair loss with a medication again, can't believe I even have this issue

Thanks so much, I really appreciate any replies x

PICS (hair is wet/drying):




View attachment 47180 View attachment 47177 View attachment 47178 View attachment 47179

Calm down. You DID NOT lose sixty percent. Maybe fifty percent on your vertex, that's where the
standard female Norwood scale starts.

It's not too late. I've seen much worse on here. Believe me. That's a Norwood two/three, so, it's probably not too
late for you.

Would start medical/Platelett rich plasma therapy ASAP if I were you. Don't wait around for the cure, because
if you do, it's gonna be a very long time coming.

 

[Sjw1582]

Fairlgirl

How are you doing? Are you still shedding/ regrowth and has your dr come up with anything.

X

 

[fairlgirl]

Fairlgirl

How are you doing? Are you still shedding/ regrowth and has your dr come up with anything.

X

Hey, just saw this sorry! I'm now 11 months off accutane and have max 40% of my original beautiful hair. This has destroyed my life. I don't want to go on Minoxidil bc of the side effects but might have to if no improvement in 6 months. I can't believe my hair is now my number 1 insecurity. All my bloodwork is normal. I may sound melodramatic but I'm losing ALL my regrowth (literally all of the new hairs fall out at 1-3cm long, and I rub them away every time I touch my hair) and that means I'm v v far away from any sort of improvement. Don't go on accutane guys, gonna regret this my whole life probably

 

[jumpfrog]

Accutane is really nasty stuff, I took it as a teenager. There have been countless class action lawsuits but they still prescribe the stuff like candy. It should be banned. It works, no doubt. But the risks and costs are just too high with this drug. Hope your hair gets better OP

 

[powerstar]

Hey, just saw this sorry! I'm now 11 months off accutane and have max 40% of my original beautiful hair. This has destroyed my life. I don't want to go on Minoxidil bc of the side effects but might have to if no improvement in 6 months. I can't believe my hair is now my number 1 insecurity. All my bloodwork is normal. I may sound melodramatic but I'm losing ALL my regrowth (literally all of the new hairs fall out at 1-3cm long, and I rub them away every time I touch my hair) and that means I'm v v far away from any sort of improvement. Don't go on accutane guys, gonna regret this my whole life probably

hey f

Hey guys,

I took Accutane for 8 months, and have been off it for 5 months. I'm F18 and I have been losing hair heavily (200-300 a day) for about 8 months.. so it started towards the end of my Accutane course.

I have low ferritin but am taking iron, as well as all other obvious vitamins.

I'm utterly devastated. I have lost about 60% of my hair, and constantly lose short regrowth. I'm at a point where I am just beginning to realise that my hair is becoming "thin", and lifeless. I had such gorgeous, thick, healthy hair and it's terrifying me that it is still falling out steadily with no signs of improvement. I am aware that this is just a bad Telogen Effluvium that will take time to sort itself out, and that none of you can medically help me, but this is so warped within my own head that I am unable to judge my own situation. So I'd really appreciate you guys commenting on my pics.

1. How far off am I from looking like my hair is obviously thin/scalp showing? I am still just about able to go out and feel "normal".

2. Based on these pics and your experiences with Telogen Effluvium, do you guys think that I will be much worse by summer, or be decently improved by then? I am asking bc I have no idea how bad a "bad telogen effluvium" typically gets.

3. Once your hair starts to improve and regrowth doesn't keep falling out, how long does it take to feel like your scalp is more covered?

I'm just so so scared.. all I want is for this to stop now. I won't mentally cope with it getting visibly thin to the extent that I don't want to go out. Never risking hair loss with a medication again, can't believe I even have this issue

Thanks so much, I really appreciate any replies x

PICS (hair is wet/drying):




View attachment 47180 View attachment 47177 View attachment 47178 View attachment 47179

hey fairlgirl! how is your hair now?did the shedding ever stop?same thing happening to me now...only took accutane for 6 weeks and the shedding started so i stopped! its still continuing 8 months later!

 

[Jhair123]

I’ve gone through something similar, and found that maintaining a positive mindset and attitude can be so important, but also extremely difficult when dealing with Telogen Effluvium or any hair loss. This video really helped me understand my situation, and helped me maintain a positive attitude. Maybe it can help some other people too:

 

[User1993]

Hi. How are you now?
I am going through exactly same thing right now. It has been 8 months of shedding and i am also losing short, new hair a lot. Your pictures seems exactly like my hair.
I hope you still read this forum to give response how you are doing now...
I hope the shedding has stopped.

 

[Pepa]

Hi. How are you now?
I am going through exactly same thing right now. It has been 8 months of shedding and i am also losing short, new hair a lot. Your pictures seems exactly like my hair.
I hope you still read this forum to give response how you are doing now...
I hope the shedding has stopped.

Hi. Im in the same situation. How are you now? I have been losing my hair for 2 years( its hell

 

[Btuqe]

please let us know if your hair loss has gotten better. I am in the exact same situation- took accutane 4 years ago, 5 months after taking it I experienced aggressive shedding and I now have permanent hair loss/sore scalp. I take spironolactone, Diane 35, and oral minoxidil. I even wear tape extensions now to help with my confidence, and a root cover up spray for my see through scalp. I’m only 23.