Frustrated with chronic telogen effluvium.. any success stories?

[Sonal]

I have had telogen effluvium before but never has it lasted beyond 3-4 months but this time its tiring, irritatingly long and just not ending. Its been more than 17 months now from what started as gradual hairfall turned excessive 9 months back and is still as bad. Everyday is a drag now, I hate to see myself in the mirror, get dressed up, go out or meet anyone. My hair used to be my crowning glory about a year back – thick, waist long and silky and today all I see is them thinning and looking horrible. I have tried all that I could, met up with doctors, specialists, got tested and have been taking medications but nothings working. Doctors have not been able to find anything wrong with me except a low iron and vitamin D. I have been on supplements since months but the nightmare is just not ending. Its scary to imagine how will I look a few months from now. No one seems to understand the trauma I’m going through. I can’t eat, can’t sleep and hate this horrible mental game.
There are times I feel like ending this all and just shaving my head off. But its damn tough to do that for any women. All my doctors tell me this will pass but no one has put a time window to it.

 

[buckthorn]

I have had telogen effluvium before but never has it lasted beyond 3-4 months but this time its tiring, irritatingly long and just not ending. Its been more than 17 months now from what started as gradual hairfall turned excessive 9 months back and is still as bad. Everyday is a drag now, I hate to see myself in the mirror, get dressed up, go out or meet anyone. My hair used to be my crowning glory about a year back – thick, waist long and silky and today all I see is them thinning and looking horrible. I have tried all that I could, met up with doctors, specialists, got tested and have been taking medications but nothings working. Doctors have not been able to find anything wrong with me except a low iron and vitamin D. I have been on supplements since months but the nightmare is just not ending. Its scary to imagine how will I look a few months from now. No one seems to understand the trauma I’m going through. I can’t eat, can’t sleep and hate this horrible mental game.
There are times I feel like ending this all and just shaving my head off. But its damn tough to do that for any women. All my doctors tell me this will pass but no one has put a time window to it.

I understand your frustration as I have had Telogen Effluvium a few times. It's a horrible nightmare. There is no advice anyone can give aside from removing the factor that's causing it. You need to identify what in your life it could possibly be. If you can't think of anything, then there's nothing you can do. Is there anything you think could be causing it? Did you get your hormone levels tested? How is your diet? Do you have any issues sleeping, or issues with chronic mental stress or depression? Is there any medication you're taking? Think hard...

 

[Sonal]

Thanks for your kind words.. its always nice to find someone

I had promptly got an entire medical done last year in september including a hormonal profile.. i got an all clear from my physician, my gynae and an endocrinologist... though the time this worsened i had severely low ferritin at 11 and vitamin d at 7.. though i have thyroid,.. but my hormones have been stable... i have been on iron and vitamin d and levels now are ferritin at 53 and vitamin d at 37
my cycles have become regular now and though i find other parameters better... there's no improvement in hair shedding... my doctors are putting this all to a nutritional deficiency issue and say it will get better.... its a long and exhausting wait.. i have no idea when will the shedding taper..
i presume the iron deficiency developed post extended breastfeeding and excessive menstrual bleeding for year post my 2nd baby... :freak:

 

[buckthorn]

Thanks for your kind words.. its always nice to find someone

I had promptly got an entire medical done last year in september including a hormonal profile.. i got an all clear from my physician, my gynae and an endocrinologist... though the time this worsened i had severely low ferritin at 11 and vitamin d at 7.. though i have thyroid,.. but my hormones have been stable... i have been on iron and vitamin d and levels now are ferritin at 53 and vitamin d at 37
my cycles have become regular now and though i find other parameters better... there's no improvement in hair shedding... my doctors are putting this all to a nutritional deficiency issue and say it will get better.... its a long and exhausting wait.. i have no idea when will the shedding taper..
i presume the iron deficiency developed post extended breastfeeding and excessive menstrual bleeding for year post my 2nd baby... :freak:

Telogen Effluvium is also very common after giving birth. Perhaps you just are just experiencing different cases of Telogen Effluvium from different factors throughout time?

 

[Sonal]

yes.. just met another dermatologist/trichologist last weekend. As expected he diagnosed it as chronic telogen effluvium saying its due to nutritional deficiencies.. says this will take a long time to correct as these deficiencies happen over a period of many years and hair start shedding only when the body reserves deplete badly.... he's put in down to protein .. though i suspect iron to be the culprit too...
Hoping this rectifies soon

 

[PappinAce]

Hey Sonal, we definitely DO understand what you're going through. I know what it's like to not want to get out of bed every morning, and life seems like an empty shell of what it used to be. Good news: iron deficiency after giving birth is one of the most common causes of hair loss. Make sure your FERRITIN levels are checked, not just iron; they should be at least 70 for normal hair growth. How many months you been on the supplements? Sometimes it can take up to six months to a year, even after correcting the deficiency, to see regrowth.

Just keep taking the ferrous sulfate or whatever has been prescribed to you, stay patient, and stay hopeful. It will come back!! Like Buckthorn said, telogen effluvium persists until you remove whatever triggered it. Seems like with correcting the iron deficiency, you have indeed removed the trigger, and you should be excited that you're on your way to recovery. It's all uphill from here.

 

[Sonal]

Hi PappinAce,

Thanks for your reply...
Everyday I'm trying to make peace with this .. as more I read about this online.. I understand this may take longer to correct than the more common 3 month recovery.. My Ferritin is now up from 11 to 130... so it may not just be only Iron.. My CBC still shows anaemia.. so I seriously doubt if this is due to my low B12.. Im a vegetarian and don't know if B12 could cause long term shedding.. I'm trying to up my protein intake too... None of my derms took this too seriously and said this does pass... but for chronic telogen effluvium this may take even longer...
Challenging part is all my other reports, hormones and tests are fine and my medical is still showing a low B12... so I don't know what else could be causing this... I hope I find the trigger soon as I'm in the midst of another Telogen Effluvium shed.... and totally lost now... and fact that its still on means the trigger is still alive and kicking...lol
Thanks for your kind words though.. and this is one of the toughest phases I'm going through....

 

[Joan]

Sonal, are you strictly taking supplements to raise your iron? Maybe iron infusions would help. My ferritin was low when my hair loss began almost four years ago (I have Androgenetic Alopecia), but raising it didn't stop the shedding. My B12 was also on the low end of normal, and raising that didn't help either. I also suffered a terrible Telogen Effluvium shed three months after my first son was born (he's 21 now), but that resolved itself within a couple of months. Due to your nutritional deficiencies, maybe your postpartum Telogen Effluvium is hanging on longer. Also, have you had a scalp biopsy?

 

[Sonal]

Hi Joan..
Have seen 3 derms in last 10 months.. initially they said Telogen Effluvium.. now the latest Doctor termed it as Chronic Telogen Effluvium... he said its coz of nutritional deficiencies of protein. .though when this first started I had low ferritin B12 and Vitamin D.. now most of these have improved however B12 is still low.... My Doctor says.. this is Chronic and takes time to pass and said its tough to say how long will this take...
I always had long thick straight hair... so its painful to see them thinning.. and I don't want to try Rogaine... I read it comes with notorious side effects..
I had post partum Telogen Effluvium that resolved after 3 months... lnterestingly this started 3 months after I stopped breastfeeding. .. No I havn't had a biopsy coz Im regrowing hair alongside too so it seems Telogen Effluvium..but the shedding rate is too high and prolonged... and now frustrating as I don't know when will this correct

Sonal, are you strictly taking supplements to raise your iron? Maybe iron infusions would help. My ferritin was low when my hair loss began almost four years ago (I have Androgenetic Alopecia), but raising it didn't stop the shedding. My B12 was also on the low end of normal, and raising that didn't help either. I also suffered a terrible Telogen Effluvium shed three months after my first son was born (he's 21 now), but that resolved itself within a couple of months. Due to your nutritional deficiencies, maybe your postpartum Telogen Effluvium is hanging on longer. Also, have you had a scalp biopsy?

 

[Joan]

Hi Joan..
Have seen 3 derms in last 10 months.. initially they said Telogen Effluvium.. now the latest Doctor termed it as Chronic Telogen Effluvium... he said its coz of nutritional deficiencies of protein. .though when this first started I had low ferritin B12 and Vitamin D.. now most of these have improved however B12 is still low.... My Doctor says.. this is Chronic and takes time to pass and said its tough to say how long will this take...
I always had long thick straight hair... so its painful to see them thinning.. and I don't want to try Rogaine... I read it comes with notorious side effects..
I had post partum Telogen Effluvium that resolved after 3 months... lnterestingly this started 3 months after I stopped breastfeeding. .. No I havn't had a biopsy coz Im regrowing hair alongside too so it seems Telogen Effluvium..but the shedding rate is too high and prolonged... and now frustrating as I don't know when will this correct

I've been using Rogaine for over two years. It hasn't helped with my shedding, unfortunately, but I haven't experienced any side effects at all. I'm wondering, though, if it would even help with your Telogen Effluvium, since your doctor is attributing it to nutritional deficiencies. Luckily, you are having regrowth. I hope things turn around for you soon.

 

[Sonal]

One thought that has been crossing my mind after reading many forums on chronic Telogen Effluvium... May be the fact that I'm stressing about my hair fall may be causing it to prolong in the first place.... Many said... Stress is a huge culprit as far as hair loss is concerned and yes i have been really down because of all this and this is always the first thing on my mind
Tough not too stress if your hair have been falling out that long ... isn't it?

 

[Joan]

I'd say it's more than tough--it's impossible.

I went through a couple of depressing and stressful times in my life--my father's death and a subsequent divorce--which had no impact on my hair. That's me, though. Stress could be affecting you differently.

 

[Jay123]

I'd say it's more than tough--it's impossible.

I went through a couple of depressing and stressful times in my life--my father's death and a subsequent divorce--which had no impact on my hair. That's me, though. Stress could be affecting you differently.

 

[Jay123]

Has there been any progress with you? I am on month 13. Less than half my hair. I see some really thin regrowth i dont know if it is a good sign. Shedding about 100 a day too much for me. At the start of this ferrtitin was 16. It is now abor 70 since the start of May. The hair is weak and thin. I dont know what to do. I am heartbroken and tired.

 

[Bobbie]

Thanks for your kind words.. its always nice to find someone

I had promptly got an entire medical done last year in september including a hormonal profile.. i got an all clear from my physician, my gynae and an endocrinologist... though the time this worsened i had severely low ferritin at 11 and vitamin d at 7.. though i have thyroid,.. but my hormones have been stable... i have been on iron and vitamin d and levels now are ferritin at 53 and vitamin d at 37
my cycles have become regular now and though i find other parameters better... there's no improvement in hair shedding... my doctors are putting this all to a nutritional deficiency issue and say it will get better.... its a long and exhausting wait.. i have no idea when will the shedding taper..
i presume the iron deficiency developed post extended breastfeeding and excessive menstrual bleeding for year post my 2nd baby... :freak:

Hi PappinAce,

Thanks for your reply...
Everyday I'm trying to make peace with this .. as more I read about this online.. I understand this may take longer to correct than the more common 3 month recovery.. My Ferritin is now up from 11 to 130... so it may not just be only Iron.. My CBC still shows anaemia.. so I seriously doubt if this is due to my low B12.. Im a vegetarian and don't know if B12 could cause long term shedding.. I'm trying to up my protein intake too... None of my derms took this too seriously and said this does pass... but for chronic telogen effluvium this may take even longer...
Challenging part is all my other reports, hormones and tests are fine and my medical is still showing a low B12... so I don't know what else could be causing this... I hope I find the trigger soon as I'm in the midst of another Telogen Effluvium shed.... and totally lost now... and fact that its still on means the trigger is still alive and kicking...lol
Thanks for your kind words though.. and this is one of the toughest phases I'm going

What type of iron did you use to bring your ferritin up? Everytime I try an iron supplement, my shed doubles. This with my ferritin at 20.

 

[Jay123]

My ferritin in 4 months went from 30 to 70. I was taking 1 iron tablet from the dr and supplementing with 10 floradix tablets as well. I doubt ferritin is my issue. Hair still falling. No growth. All of my body hair is affected to. My mum has my hair at 70 she has more hair than me now. Saddened and i have given up all hope. Weightloss of a stone in a week last feb 2016 i think might have triggered this. I was 8 stone and was 7 stone by the end of the week. My hair is weak dry breaks has no flexibilty tangles. Is very bad all over but temples and part are really bad. I am wondering whether this is permanent hair loss. A friend had her baby in october and has lots of regrowth. I started loosing lots of hair in may and i have none except one or two hairs. Ferritin was under 40 until march of this year. I think i have all but given up. Feel like there is no joy left in my life i cannot enjoy anythig as more hair falls out and no.regrowth. tsh is 2.14. Dr says its normal and that my hormones are normal.

 

[hairblues]

My ferritin in 4 months went from 30 to 70. I was taking 1 iron tablet from the dr and supplementing with 10 floradix tablets as well. I doubt ferritin is my issue. Hair still falling. No growth. All of my body hair is affected to. My mum has my hair at 70 she has more hair than me now. Saddened and i have given up all hope. Weightloss of a stone in a week last feb 2016 i think might have triggered this. I was 8 stone and was 7 stone by the end of the week. My hair is weak dry breaks has no flexibilty tangles. Is very bad all over but temples and part are really bad. I am wondering whether this is permanent hair loss. A friend had her baby in october and has lots of regrowth. I started loosing lots of hair in may and i have none except one or two hairs. Ferritin was under 40 until march of this year. I think i have all but given up. Feel like there is no joy left in my life i cannot enjoy anythig as more hair falls out and no.regrowth. tsh is 2.14. Dr says its normal and that my hormones are normal.

If its your body hair too I only know that to be Areata not andgrogencic or Iron deficient..but I could be wrong.

I am ferritin anemic and Androgenic alopecia..I have to take a lot of iron and use minoxidil i also use a topical spironolactone estrodial blend.

 

[Jay123]

Does minoxidial work? I have started using regaine this past week. I now think its fphl. My hair was super super thick 18 months ago. Now its 40 % what it was. Hair isnt growing. I dont think it has grown lengthwise in 3 months. I am monitoring that now. The hair quality is really poor. My body hair growth has slowed down massively everywhere. Where hair falls out there is no regrowth. My mum and all her female relatives have lots of hair. My dad and a brother have male pattern baldness. I am absolutely devastated. I worry that the slow and stopped growth on body means regrowth on head or continuing growth is over, result all hair will eventually shed. I have finally realised its not telogen like 2 derms said. It is very hard to accept this. I have become a social recluse. I am not interested in anything anymore.

 

[Jay123]

This is what it now looks like. In jan 2016 you couldnt see any scalp

 

[Henrietta Folkes]

I have had telogen effluvium before but never has it lasted beyond 3-4 months but this time its tiring, irritatingly long and just not ending. Its been more than 17 months now from what started as gradual hairfall turned excessive 9 months back and is still as bad. Everyday is a drag now, I hate to see myself in the mirror, get dressed up, go out or meet anyone. My hair used to be my crowning glory about a year back – thick, waist long and silky and today all I see is them thinning and looking horrible. I have tried all that I could, met up with doctors, specialists, got tested and have been taking medications but nothings working. Doctors have not been able to find anything wrong with me except a low iron and vitamin D. I have been on supplements since months but the nightmare is just not ending. Its scary to imagine how will I look a few months from now. No one seems to understand the trauma I’m going through. I can’t eat, can’t sleep and hate this horrible mental game.
There are times I feel like ending this all and just shaving my head off. But its damn tough to do that for any women. All my doctors tell me this will pass but no one has put a time window to it.

Hello,
I was wondering how things are now with your situation? I have had Telogen effluvium for 8 months and it's not slowing down. Mine started with a round patch which luckily filled back in (they thought alopecia at first)but then started shedding all over with the bulb ends. I had to cut my hair short to hide how thin it's become. I get re-growth but a lot tends to fall out again within a month. My ferratin levels were 14 at the start and now up to 50 but it hasn't made any difference.

I've added a pic of my hair before, halfway and now. I'm worried that I'm not getting any regrowth right at the front middle of my hair line which i have to hide! It's been such a horrible time and I feel so ugly and less like going out now. Reading all these similar stories really helps. I'll also mention that I've never had dandruff before and it started when this did and a really painful scalp. I can't wear my hair up anymore as it hurts too much. Would love to hear a success story!