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_Andy_

The answers I got from my doctor about hair loss

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i have had those few hairs at the front forever, and now that you pointed out that frizzy mess of hairs at the top of my head i guess i can consider that regrwoth as well. both of these make managing my hair a pain in the ass, because a lot of the hairs up front aren't long enough and fall into my eyes. in any case, that article is pretty nice and i may have the nail thing towards the tips of my nails. i don't want to deal with this for up to 3 more motnsh, though. ; \

edit; btw, my hair loss seems to have sped up again. i'm back to losing 45 hairs, almost double what i was losing.

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Heres a pic of all the hair Ive lost in the past few weeks.. its scary.

[Edited link out]

Heres my parting up top..

[Edited link out]

Edited by Ishayat
Edited links out - links were broken
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buddy, that isn't as much hair as i was expecting you to show!! i collected 4 days worth and it accumulated to more than that, and my hair is alot short than yours!!

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Rudolph said:
Heres a pic of all the hair Ive lost in the past few weeks.. its scary.

[Edited link out]

Heres my parting up top..

[Edited link out]

I know it sucks, and I don't want to make you angry, but that part is completely normal. And the hair loss might also be completely normal. Of course if you're shedding a lot of hair, "normal" doesn't cut it, probably.

Let me ask you this: does it look like you lost hair at all, or are you just shedding?

Edited by Ishayat
Edited links out - links were broken
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It is pretty shit here over in the UK in the way of health treatment, sure it's free but i had to work damn hard to get them to test me for ANA. I had to say i also had joint pain, which i don't but without saying that he wasn't really prepared to do it...

I'm currently being tested for uric acid, ANA and fsr or something (any minor inflamations it should detect apparently)

i have been tested for pretty much everything that can cause hairloss after i have the ana results. I have been tested for heamoglobin levels but not ferritin, which if low could result in my symptoms, if these results come back negative i may try and push them to test ferritin aswell, as doctors under estimate the result of low ferritin...

thyroid etc has already been checked, i think i may have to face facts that i will never get to the route of my problems if these tests come back negative and hope they wear off with time...

funny thing is that whilst i was on accutane and getting my blood drawn i was always dizzy after, today i was absolutely fine, which is how i was when i had my blood drawn before tane!! hopefully a sign of something in my body returning to normal...

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is that much normal to see in the drain after 4 days? who knows, maybe i stopped shedding when it slowed and just don't see this as normal. i washed my hair after 4 days and got around 40ish and it looked like i lost a lot less than that in my drain. ; \

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40 hairs after 4 days and not shedding at any other time would be a dream and is considered very normal, david you have nothing to worry about now man, seriously!!

I collected 150 hairs in the shower every day for 4 days straight then i stopped coz it doesn't exactly make showering very enjoyable lol. i kept what i collected in a nice little zip lock bag incase the DR didn't believe the volume i was loosing...

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It is pretty shit here over in the UK in the way of health treatment, sure it's free but i had to work damn hard to get them to test me for ANA. I had to say i also had joint pain, which i don't but without saying that he wasn't really prepared to do it...

I'm currently being tested for uric acid, ANA and fsr or something (any minor inflamations it should detect apparently)

i have been tested for pretty much everything that can cause hairloss after i have the ana results. I have been tested for heamoglobin levels but not ferritin, which if low could result in my symptoms, if these results come back negative i may try and push them to test ferritin aswell, as doctors under estimate the result of low ferritin...

thyroid etc has already been checked, i think i may have to face facts that i will never get to the route of my problems if these tests come back negative and hope they wear off with time...

funny thing is that whilst i was on accutane and getting my blood drawn i was always dizzy after, today i was absolutely fine, which is how i was when i had my blood drawn before tane!! hopefully a sign of something in my body returning to normal...

lamarr.. sometimes I think you overanalyze things

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maybe dolph, but if the test comes back positive i or anyone else won't be saying that will they mate? the Dr obviously thought it was a good idea to check, he was shocked at how bad my mouth ulcers were!! my dad is also a dentist and tells me mine are rather large!!

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_Andy_ said:
Rudolph said:
Heres a pic of all the hair Ive lost in the past few weeks.. its scary.

[Edited link out]

Heres my parting up top..

[Edited link out]

I know it sucks, and I don't want to make you angry, but that part is completely normal. And the hair loss might also be completely normal. Of course if you're shedding a lot of hair, "normal" doesn't cut it, probably.

Let me ask you this: does it look like you lost hair at all, or are you just shedding?

Looking at pics before accutane my hair was definitely thicker. At the moment I dont think my hair is thinning anymore.. I mean Im past the horror stage where everytime I shampood in the shower my hands were covered in hair. Now I would estimate that Im losing about 20 hairs per shower. In some areas where I part my hair theres lots of short hairs sticking up. Do you think this means that ALL the follicles where I lost hair will recover? If I fully recover I dont think Im ever going to go on any medication again where telogen effluvium is a possible side effect. I'm taking Hair, Skin, and Nail pills that I ordered off ebay and hopefully they will help.

Edited by Ishayat
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Hi,

I'm new to this forum, but I'm also a accutane hair loss sufferer. I've been reading through the posts and I'd like to say to Rudolph that honestly, the amount of hair you are losing is NOTHING compared to the amount i've been losing for 9 months now. From most posts I've read people lose between 100-300 hairs daily who are experiencing this excessive shed. Although, it may be more than normal for you, if that's all I was losing, I would be happy. I lose about that much in 1 day!

Basically, I was on accutane on and off for 1.5 years. Initially i was only on a very low dosage of 10mg. Then I switched derms and she put me on a 5 month course of 40mg. I had hair loss from the very begining, but itwasn't really noticible and my derm told me it would come back as soon as I stopped the medication. At the end of the 5 months (which my hair shed more excessively throughout) I stopped for a month and my acne started to come back. Strange thing is I think my hair also started to regrow. Then she suggested 2 months at 60mg so I started that. After only 3 weeks my hair was falling out in clumps, so I stopped on my own. Since then, it has been a complete nightmere. I'm now 9 months post accutane and my hair is still falling out excessively.

I've been to 5-6 docs and they all said it looks like TE and it should stop within 6 months (that's the norm), yet mine hasn't! I lose short new hairs as well as long and I've had to cut my hair very short (when it was always long and healthy). It looks horrible and thin even being short now. In many ways, I feel it's ruined my life. It's been such a horrible experience and I wish I had never taken the drug. I also developed a bone spur on my knee which is permanent. I've had all my bloodwork including my ferritin monitored and everything is normal.

I've tried to eat more protein, take b complex, biotin, flax and black current seed oil on a daily basis as well as work out and generally be very healthy. It seems nothing helps and I'm now at a complete loss. I've tried to be very positive and keep thinking every month it will at least slow down and maybe improve, but it doesn't. I had plans to move overseas this fall and now I don't think I'll be able to if this issue persists. I just don't know what to do anymore! I'm glad I found this site as it seems that there are also people suffering through this and I think it's good to have some support.

If anyone has any recovery stories or any feedback - please help!

thanks very much.

jade

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Hi,

I'm new to this forum, but I'm also a accutane hair loss sufferer. I've been reading through the posts and I'd like to say to Rudolph that honestly, the amount of hair you are losing is NOTHING compared to the amount i've been losing for 9 months now. From most posts I've read people lose between 100-300 hairs daily who are experiencing this excessive shed. Although, it may be more than normal for you, if that's all I was losing, I would be happy. I lose about that much in 1 day!

Basically, I was on accutane on and off for 1.5 years. Initially i was only on a very low dosage of 10mg. Then I switched derms and she put me on a 5 month course of 40mg. I had hair loss from the very begining, but itwasn't really noticible and my derm told me it would come back as soon as I stopped the medication. At the end of the 5 months (which my hair shed more excessively throughout) I stopped for a month and my acne started to come back. Strange thing is I think my hair also started to regrow. Then she suggested 2 months at 60mg so I started that. After only 3 weeks my hair was falling out in clumps, so I stopped on my own. Since then, it has been a complete nightmere. I'm now 9 months post accutane and my hair is still falling out excessively.

I've been to 5-6 docs and they all said it looks like TE and it should stop within 6 months (that's the norm), yet mine hasn't! I lose short new hairs as well as long and I've had to cut my hair very short (when it was always long and healthy). It looks horrible and thin even being short now. In many ways, I feel it's ruined my life. It's been such a horrible experience and I wish I had never taken the drug. I also developed a bone spur on my knee which is permanent. I've had all my bloodwork including my ferritin monitored and everything is normal.

I've tried to eat more protein, take b complex, biotin, flax and black current seed oil on a daily basis as well as work out and generally be very healthy. It seems nothing helps and I'm now at a complete loss. I've tried to be very positive and keep thinking every month it will at least slow down and maybe improve, but it doesn't. I had plans to move overseas this fall and now I don't think I'll be able to if this issue persists. I just don't know what to do anymore! I'm glad I found this site as it seems that there are also people suffering through this and I think it's good to have some support.

If anyone has any recovery stories or any feedback - please help!

thanks very much.

jade

As i said in the other post jade you will eventually recover, your hair will not be miniturizeing (male hormones required for this) and the folicles are still capable of producing healthy hair. I hate to break it to you but it may take years for you to recover, but i honestly think you will eventually!! You could think about trying minoxidil? keep up the healthy liftstyle etc though as this will surely help in the long run!!

best of luck!!

P.s. do you have any other symptoms, e.g. mouth ulcers, facial rash, joint pain, lethargy etc? that you have experience since you first took accutane?

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Thanks for the encouraging words larmarr, but what makes you so sure that I will recover? H ave you read that from other women? Have you read of other cases of such prolonged hair loss from accutane? I have heard that prolonged TE can lead to AGA in women because there is a limited amount of times that your hair will regrow and mine seems to be going through short cycles....have you heard of that with accutane?

I haven't had any other real side effects besides the hair loss and bone spur on my knee (that's enough to be honest!)

Jade

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Update:

Hi guys,

I've been shedding again recently, about 20 to 30 hairs a day. I have concluded that my TE has led to AGA. My hairline has receded on the left and right for sure. I am still regrowing hair and my hair looks slightly better when it's wet. It feels a little thicker, etc. But I am pretty sure now that I have AGA.

But I want to make this clear: the hair I lost due to Accutane seems to be coming back. I've been on Rogaine since the beginning of June and Propecia since the beginning of August. I hope that this will help take care of the AGA.

I'll be by every once in a while to check on your progress.

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Jade, you will be suprised how long you can shed like you are being a woman and all, it is very unlikely that it will lead to Androgenic alopecia for yourself!! May i ask how old you are? the other brilliant benefit of being a woman is that if you do have hairloss you can take one of the most potent and effective anti androgens around (orally) and thats spironolactone (sp) if you find that in a years time for instance you are still shedding then i don't see any problem in asking for spiro from your DR, this will effectively reverse any miniturization caused by any DHT binding to your hair follicles. Spiro also competes with DHT at the receptor site on the follicles... so it would be a good preventative measure if you are really worried about it, but you should wait as long as you can bare before taking more drugs imo (i learn't the hard way with tane). Men cannot take spiro as it is so effective at it's job!!

And yes i do remember several cases going on for as long as yours and them still recovering, there was a specific female hairloss forum i was reading several months ago, julius (he is male btw) from this thread had also post in there...

I remember one Lady having shed for 18 months and still recovering (hair returned to same as it was pre tane), she believed b-complex and biotin was part of the reason for recovery...

I'm sure Androgenic alopecia in chronic TE with women can happen, but at the same time for many many women this will not happen and they key is to keep feeding your hair so it can keep producing strong strands of hair that aren't open to miniturization from DHT..

I think in another 4 months or so you should possibly consider minoxodil, and if you aren't already take biotin (so long as it doesn't effect your acne) and a b complex, you should begin.

The minoxidil is believed to be of some help due to the fact it can extend the anagen (growth stage) of the hair cycle...which is obviously severely effected in us...

Believe me your odds of recovery are far better than us guys here!! stay strong i know it's hard

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i went to the derm today. she said that i took it a lower dose for such a short time (apparently i only took it 3 and a half months) she can't see my hair loss becoming permanent. i don't even care anymore. i don't even know if i'm still losing hair. i'm haven't really been worried about it the last week. i have a nice set of hair now and i just don't see how shedding a few more hairs per day can really do anything.

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Hi Andy,

Thanks for the update. Just wondering if your conclusions about your hair being TE that has led to AGA have anything to do with Lupus? I thought you had mentioned that in another post? How long have you been experiencing shedding for? What caused the TE to lead to AGA and was it from the accutane?

thanks!

jade

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Jade, you will be suprised how long you can shed like you are being a woman and all, it is very unlikely that it will lead to Androgenic alopecia for yourself!! May i ask how old you are? the other brilliant benefit of being a woman is that if you do have hairloss you can take one of the most potent and effective anti androgens around (orally) and thats spironolactone (sp) if you find that in a years time for instance you are still shedding then i don't see any problem in asking for spiro from your DR, this will effectively reverse any miniturization caused by any DHT binding to your hair follicles. Spiro also competes with DHT at the receptor site on the follicles... so it would be a good preventative measure if you are really worried about it, but you should wait as long as you can bare before taking more drugs imo (i learn't the hard way with tane). Men cannot take spiro as it is so effective at it's job!!

And yes i do remember several cases going on for as long as yours and them still recovering, there was a specific female hairloss forum i was reading several months ago, julius (he is male btw) from this thread had also post in there...

I remember one Lady having shed for 18 months and still recovering (hair returned to same as it was pre tane), she believed b-complex and biotin was part of the reason for recovery...

I'm sure Androgenic alopecia in chronic TE with women can happen, but at the same time for many many women this will not happen and they key is to keep feeding your hair so it can keep producing strong strands of hair that aren't open to miniturization from DHT..

I think in another 4 months or so you should possibly consider minoxodil, and if you aren't already take biotin (so long as it doesn't effect your acne) and a b complex, you should begin.

The minoxidil is believed to be of some help due to the fact it can extend the anagen (growth stage) of the hair cycle...which is obviously severely effected in us...

Believe me your odds of recovery are far better than us guys here!! stay strong i know it's hard

Thanks very much Lamarr for the kind words! You seem to be very knowledgeable about all of this and it's reassuring to hear that you've heard of other cases similar to mine still recovering post accutane.

I'm 34. What did you mean by continuing to feed my hair? You mean by my diet? What would you suggest? I do take b complex and biotin as well as black current seed oil and flax daily. I'm going to try and wait it out for as long as I can before trying any other drugs! Can you tell me what the difference is between AGA what Andy suggested he has and AA? Do you think my prolonged TE is now chronic TE?

Do you also shed short new hairs? How long have you been shedding for? How long have you been off of accutane? Any improvements?

all the best

jade

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Jade, you will be suprised how long you can shed like you are being a woman and all, it is very unlikely that it will lead to Androgenic alopecia for yourself!! May i ask how old you are? the other brilliant benefit of being a woman is that if you do have hairloss you can take one of the most potent and effective anti androgens around (orally) and thats spironolactone (sp) if you find that in a years time for instance you are still shedding then i don't see any problem in asking for spiro from your DR, this will effectively reverse any miniturization caused by any DHT binding to your hair follicles. Spiro also competes with DHT at the receptor site on the follicles... so it would be a good preventative measure if you are really worried about it, but you should wait as long as you can bare before taking more drugs imo (i learn't the hard way with tane). Men cannot take spiro as it is so effective at it's job!!

And yes i do remember several cases going on for as long as yours and them still recovering, there was a specific female hairloss forum i was reading several months ago, julius (he is male btw) from this thread had also post in there...

I remember one Lady having shed for 18 months and still recovering (hair returned to same as it was pre tane), she believed b-complex and biotin was part of the reason for recovery...

I'm sure Androgenic alopecia in chronic TE with women can happen, but at the same time for many many women this will not happen and they key is to keep feeding your hair so it can keep producing strong strands of hair that aren't open to miniturization from DHT..

I think in another 4 months or so you should possibly consider minoxodil, and if you aren't already take biotin (so long as it doesn't effect your acne) and a b complex, you should begin.

The minoxidil is believed to be of some help due to the fact it can extend the anagen (growth stage) of the hair cycle...which is obviously severely effected in us...

Believe me your odds of recovery are far better than us guys here!! stay strong i know it's hard

Thanks very much Lamarr for the kind words! You seem to be very knowledgeable about all of this and it's reassuring to hear that you've heard of other cases similar to mine still recovering post accutane.

I'm 34. What did you mean by continuing to feed my hair? You mean by my diet? What would you suggest? I do take b complex and biotin as well as black current seed oil and flax daily. I'm going to try and wait it out for as long as I can before trying any other drugs! Can you tell me what the difference is between AGA what Andy suggested he has and AA? Do you think my prolonged TE is now chronic TE?

Do you also shed short new hairs? How long have you been shedding for? How long have you been off of accutane? Any improvements?

all the best

jade

Your taking the right supplements there then, that's good!! i wouldn't recomend much more really, other than i take grape seed extract over black current, i do firmly believe in grape seed extract....Do some of your own research on it to drawn conclusions!! Fish oil capsules can only help aswell, as nearly all forms of hairloss envolve some sort of inflamation and omega 3 is proven to have an anti inflamatory effect.

AGA and AA are the same thing.

As for your shedding i think it is hard to tell with accutane, there are many other factors as accutane can effect the sebacious glands, capilaries etc, so it isn't as clear cut as your normal stress induced or pregnancy induced TE. I definenetly wouldn't call it chronic just yet though...

I Myself shed both long and short hairs aswell, i have been shedding for about 4 and a half months (aprox 150 hairs a day) and have been off tane for about 6.... So far my hairloss in terms of shedding, if anything is worse... I do constantly have a stream of regrowth though and i don't think my scalp density has gone below 50% of it's original state...

I really don't think your hair will get MUCH worse than it is now...just maintain good health and get plenty of exercise, try and stay stress free as much as possible and hope for the best, Your hair will likely be able to shed constantly and still maintain a similar density to what you have now, I assume your hairloss is completely diffuse and there aren't any areas worse than others? quite often the temple area can be worse though...

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Hi Andy,

Thanks for the update. Just wondering if your conclusions about your hair being TE that has led to AGA have anything to do with Lupus? I thought you had mentioned that in another post? How long have you been experiencing shedding for? What caused the TE to lead to AGA and was it from the accutane?

thanks!

jade

Many people (and it has been proven) believe that accutane has induced a similar disease as Lupus, which is an auto immune disease... One symptom that 50% of lupus patients have is hairloss, which normally resolves when the condition is in remission, however people often don't realise they have lupus until the condition worsens...

If you have no other symptoms you can rule lupus out for sure!!

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