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chicanery

My (F19) accutane telogen effluvium journey (PICS)

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I stopped taking Biotin as well. It was making my hair super oily and I didn't notice it helping at all. I'm thinking of maybe trying Minoxidil after the wedding in a few weeks. I don't really know what else to do either.. 

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hello guys!! how are you now?? any update? chicanery, MeritNorth
i have 8 months with the same problem of you.
im taking biotin 6000 mcg, liverguard, ferretin 325 mg. i thinking to shave my hard, honestly!! :(

sorry, shave my hair :(

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Almost 12 months off the drug and doing badly. My ferritin count is now in the 80s which is way too high to be contributing. I'm not sure what Accutane has done to my body... I lose all regrowth. My hair is horrible and thin. So, so depressed as it was absolutely amazing before.

Edited by chicanery
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I'm over 10 months off the drug and still losing at the same rate. Losing all regrowth as well. My temples are the worst and are completely bald. I'm losing hope that my hair will ever return to normal. :( 

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Hi Chicanery,

This thread caught my eye while doing my (now daily) search for telogen effluvium-related blogs, articles, pictures, etc. While my situation did not begin the way yours did, I can relate to it on so many levels. I've been experiencing extreme hair loss since September of last year and it has brought me to my knees. I feel that no matter the outcome, I will never be the same person I was before...I don't think anyone who hasn't been through it can quite understand the horror of watching your hair, a source of self-confidence and femininity for many women, including myself, disappear in a matter of months. My story is long and complex but I will try and sum it up for you...last fall I realized I could no longer ignore the symptoms that had slowly but surely been affecting my health for about six months. These included fatigue, sore muscles, joint pain, brain fog, memory loss, dry hair, cold fingers, stomach pain, and more. After dozens upon dozens of tests and about five different doctors, I was diagnosed with systemic candida, multiple nutrient deficiencies, low thyroid, low ferritin, high mercury, leaky gut, and low protein. I've been on just about every supplement you can imagine, and have had to play with different dosages, combinations, and brands. My recovery has been a hellish rollercoaster ride, with some aspects of my health getting better, others getting worse, and some staying the same. I have worked so hard to heal my gut, replenish my vitamin and mineral levels, up my protein, and rebalance my hormones, and can happily say that most of these things have begun to improve. I'm still experiencing gut inflammation, according to my tests, and my hair is another frustrating matter. :( By my estimates I was losing between 700-1,000 hairs a day from October to December, and about 400-500 a day after that. For about a month I washed my hair in the sink because the sensation of clumps sliding down my back sent me into a spiral. While it's slowed down compared to fall/winter, it is still shedding, and at this point I believe I've lost around 60% of it. I used to have extremely thick hair. I can now see my scalp and my ponytail has become so thin I refuse to wear it up anymore. Like you, I started to notice small hairs being shed, around March. I also noticed thin, weak hairs in my sheds, which I'm sure we've all read can be a sign of female pattern baldness. :( I also had the scalp burning and tingling, but luckily that's gone away. From November to February I wore a scarf I'd ordered online, and could not bear to look at myself in the mirror. My best friend's wedding is next weekend and I've been contemplating shaving it off after that. I'm trying to staying positive and remember that the hair cycle can take over a year to correct itself. I cycle between unbridled anger, intense grief, and total numbness on a daily basis but am working on my coping skills, as this has taken so much energy and motivation from me. Sorry for the long post, I just wanted to offer some consolation and support, as I wished someone had done for me through this bleak period of my life. Stay strong!! :) 

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Thank you so much for share your story Undone515.
I am waiting for my thyroid profile and hemoglobin for tomorrow.
sorry for my spelling and grammar, im not english native but i am having the same felling than you guys.
Im taking botin 6000, iron, using biotin shampoo. Until now still shedding :( 
i want to be positive... if it will be a time that i need to shave my head, i will do it. I want to enjoy life even i dont have hair. There are people with  difficult situation there, I don't want to let this affect my happiness and well-being, so as you said stay strong!! :) 

 

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You're welcome, Karly123! I find it incredibly therapeutic to share my experiences and feelings surrounding my hair loss, and reading other people's stories gives me the strength to keep pushing on. It's such a hard thing to explain to other people in my life...being part of communities like this makes a world of difference! Good luck on your latest tests, let us know how it goes! I know exactly what you mean when you say "I want to enjoy life even if I don't have hair"....I'm so tired of letting my hairloss control my every waking thought...I'm ready to smile again. :) Sending hugs to you all from the midwest! 

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Hi Everyone,

Just wanted to say that reading your stories has been so helpful to me as well. I've been losing hair constantly since Dec/Jan and it's taken a huge toll on me. Every other second is spent thinking about my hair, and when I'm not looking at pictures of my hair before the shedding started, I'm looking for any signs of regrowth. I'm really hoping my shedding stops soon, but since I don't know the cause, I'm not sure what will happen. I've talked to nearly a dozen doctors and have had tons of blood work done but still no cause can be found. Sending you guys hugs and best wishes! Keep me posted on your journeys.

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Hello VetalCrepe, thanks for your share!
The results of my test are ok, hemoglobin and thyroid. Well, Obviously the cause of my shedding is isotretinoin, so i have to be patient and wait until this stop. i'm still taking biotin (with Keratin) and iron. I forgot to tell you that i was applying minoxidil 5% but i started to fell no good, dizziness, leg pain, blurred vision and tightness in the chest so i stop it.
What I really want to know is if anyone in this forum has been cured :)
 

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Hi peoples,

I find it interesting and very useful when female Accutane patients complain of hair loss and/or thinning. As a male if I mention this to a doctor they generally go straight for MPB as the obvious culprit rather than an acne drug. They can't seem to explain that one. I can only imagine how difficult it would be for a woman to experience these issues. I'm not happy about it as a male either but as my Dad is bald I assumed it was going to happen anyways!

I spoke to a dermatologist about the hair loss after my course and he said that isotretinoin is known to physically weaken the bonds of the hair follicles where they attach to the skin. He told me this like it was common knowledge. For some reason they forgot to mention that in the glossy brochure provided by Roche. The product information slip also articulates possible temporary hairloss; not permanent. For me the shedding started almost abruptly during my course. I remember vividly because beforehand I used to have quite heavy dandruff. If I scratched my scalp vigourously the dandruff would fall out like parmesan (sorry for the visual!). As my skin became thinner on the meds, one day I scratched my scalp and the dandruf was basically gone; what replaced it was profuse hair loss. I would scratch my thinned scalp and the hair would just keep falling out. My hairdresser also commented that my scalp seemed very tight. Certainly some physical changes had occurred. After a few more warning signs I got off the tane, however my hair and scalp remains thin and hairs (including eyebrows) fall out very easily.

I do hear recovery stories but generally what has happened here is not good enough. There are several things about this drug which are straight up wrong. The current system has some issues. This is the end of my rant but please if you have some time consider doing my survey.

https://www.acne.org/messageboard/topic/370421-conducting-accutane-side-effect-survey/

Thanks,

MT

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Hi guys,

Recently got test results back and everything (hormones, vitamin D) came back normal. My iron is still low-ish and has stayed the exact same even though i've been taking iron supplements for the past three months. So, my doctor told me some ways to raise my iron (eating specific foods and taking iron supplements now 2x a day). He also diagnosed me with androgenetic alopecia after seeing miniaturized follicles at the front of my head near the hairline. Essentially my telogen effluvium unmasked AGA, and now I have to deal with this the rest of my life. Hope is very low right now, and  every single minute I miss my once full, thick head of hair. Doc also started me on spironolactone so we'll see how that goes. Sending much love xx

I should also mention that a huge issue was that I was on one of the highest androgen birth control pills until a week ago, so they also contributed to unmasking my AGA. hoping that what is lost right now can regrow and that I can eventually have all my hair back.

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Hi VestalCrepe,

Sorry to hear about your diagnosis. The first dermatologist I saw said the same thing (without asking a single question about my vitamin and mineral levels, gut health, or hormones). :/ I knew there was more to it than that, as the loss was so rapid and I was experiencing so many other frightening symptoms. Another derm said she was certain it was telogen effluvium and insisted I would recover. I think there's usually something more going on inside the body when the hairloss is profuse, accompanied by other symptoms, or starts suddenly. One thing I learned during my 8 plus months of research was to look for optimal levels of whatever is being tested versus normal. A lot of lab ranges are extremely broad and simply falling "inside the range" isn't enough to look or feel healthy for some people. Tests can definitely still be valuable but for instance my ferritin was in the "normal" range on my iron panel, but by holistic health standards, was extremely low and probably contributed to my fatigue, pale skin, hairloss, etc. Just something to consider. It's annoying having to interpret my own test results...I feel much more educated though, for sure. Hope everyone's having a good day.

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Guys, I think I might just start minoxidil. I am absolutely terrified about the initial shedding period and convinced I'm gonna be in a wig by Christmas, but I now unfortunately have to take an active part in recovering. I'm 12 months off Accutane, my iron is now high etc., and the shedding seems to just be worsening. I'm back to losing about 350 hairs a day?? I don't know what's going on and I'm so depressed. 

I have been told that minoxidil can be used temporarily to help stabilise Te, and then can be stopped  (maybe after a year), WITHOUT loss of the new hair? I want to believe this but I don't know. What do you all think? I want to believe that this is true but I'm not sure.  

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I used minoxidil 3% per three months, grew little my hair of the fronto-temporal area but stopped using it due to adverse effects, a month after I started with minoxidil 5% my hair grew out of the fronto-temporal area, left it after 5 days due to adverse effects (Tightness in the chest, fatigue, leg pain), but hair still remains in that area.

I'm using Himalya shampoo, I consider that it is good despite the fact that my hair is still shedding hehehe well the course of Telogen effluvium is like that.

Try to use minoxidil, chicanery, all bodies are different.

Note: sorry my spelling, i'm not a English speaker. 

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3 hours ago, [email protected] said:

I used minoxidil 3% per three months, grew little my hair of the fronto-temporal area but stopped using it due to adverse effects, a month after I started with minoxidil 5% my hair grew out of the fronto-temporal area, left it after 5 days due to adverse effects (Tightness in the chest, fatigue, leg pain), but hair still remains in that area.

I'm using Himalya shampoo, I consider that it is good despite the fact that my hair is still shedding hehehe well the course of Telogen effluvium is like that.

Try to use minoxidil, chicanery, all bodies are different.

Note: sorry my spelling, i'm not a English speaker. 

Thanks so much for this! Did you shed more hair when you started minoxidil? That's what 'm really scared of! How long did it take you to start seeing growth from it? I'm rly glad to hear that the hair remained when you stopped it! x
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Someone actually said to me today, in regards to my hairloss, "well, at least it doesn't take as long to dry it or style it in the morning, right?! That's a plus!" I forced a half-smile although I wanted to scream. >:( Thought I would share that gem. Hope everyone is doing well today...I know this journey is hell but we'll come out on the other side! :* 

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Hello chicanery, my hair still shedding but i can see a baby hairs in fronto-temporal area. I stopped minoxidil 5% two wees ago, i did not loose the baby hairs, actually i can see more :) 
Try with minoxidil 3%, twice at day. I used it for 3 moths. i can feel the minoxidil 5% is faster than 3% but the side effect stronger are stronger :( 

I'm sorry to read that Undone515, the most of people don't  feel what we are feeling now. Try to be positive :) ...this will be temporary! i know will take maybe 18 months but it will pass :) 

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On 8/15/2017 at 11:59 PM, [email protected] said:

Hello chicanery, my hair still shedding but i can see a baby hairs in fronto-temporal area. I stopped minoxidil 5% two wees ago, i did not loose the baby hairs, actually i can see more :) 
Try with minoxidil 3%, twice at day. I used it for 3 moths. i can feel the minoxidil 5% is faster than 3% but the side effect stronger are stronger :( 

I'm sorry to read that Undone515, the most of people don't  feel what we are feeling now. Try to be positive :) ...this will be temporary! i know will take maybe 18 months but it will pass :) 

Thank you so much!! I think I might try the minoxidil then. I'm so scared it's going to cause a huge shedding to begin with, but I'll have torisk that :( 
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Hi everyone, I posted back in May when I was experiencing peak hair loss ( 5 months post accutane). I'm now about 9 1/2 months post accutane and things are looking up! I promised myself that I'd come back and update if I saw any improvement, just because I know how difficult it is to find positive posts as nobody seems to come back and update if they no longer have the issue.

My actual amount of hairloss wasn't quite as bad as some of you are describing, however my hair was super duper thin to begin with - if I'd lost the same amount of hair as you guys I'd be 100% bald by now for sure.  I'm still getting a bit of hairfall, but its definitely decreased a bit from what it was, and I can definitely see some new growth in the form of silly looking baby hairs around my frontotemporal region that appear to be here to stay for the time being (fingers crossed). 
I had super crazy low iron back in May and I think I've managed to improve it slighly through dietary changes, so its hard to say whether that had anything to do with it. Also, I've been using Matrix Biolage Full Density biotin shampoo and conditioner, and I highly doubt that it actually helped the situation and I'm not one to recommend products as a wonder cure or anything, although it did definitely make my hair feel a little bit thicker, which made me think about it less and stress less about it.

I'll be sure to keep checking back and update again in a few months. I really really hope the worst of it has past and I hope you guys start seeing some improvement as well. Hang in there! 

Edited by spacecore
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Thank you for the update, spacecore! It's always comforting to hear stories of recovery from people who've been through a long-term shed. My (non-Accutane-related) shedding is reaching the one-year mark now. :( This is such a horrible milestone for me and while I'm still holding on to hope, I find it more and more difficult to be positive as the months roll by. I had a recent flare-up of gut issues ( which I think caused more shedding as well as my hair to dry out a bit) but I know for certain that dietary changes/supplements have made a huge difference in fixing my health, so I'm sticking strong to them. I received good news last week, when all of my autoimmune tests came back negative...something to celebrate! My latest thyroid panel also came back looking great, so I know the shedding is no longer related to that. Unfortunately my ferritin dipped back down again, but it may be because I had stopped my iron pills back in July due to high serum iron and constant nausea/dizziness. I'm currently back on them. Ferritin was the hardest thing for me to bring up, as it rose only five ng/mL after supplementing for seven months. Very annoying! Especially because I made sure to take it with vitamin C, away from coffee and tea, etc. Anyway, hope everyone is doing well. Would it help anyone if I shared some pictures I've taken over the past year of the hair loss?? I've never shared them with anyone but I know for me, seeing the hair loss patterns of others gave me something to compare my own with. Happy Labor Day weekend, everyone! :) 

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