Keeping our hair on! Hair loss support thread!

[coffeecake]

Hi, as promised and based on a few Mumsnetters expressing a desire of a support thread for hair loss, here it is!
Feel free to ask any questions, share your experiences etc...

Hi, I've been lurking, but have just posted on another hair extension thread, so thought I better come and say hello. I feel a bit of a fraud, as have a whole head of the Lucinda Ellery type extensions, though not from her (and cheaper than LE I believe). I've had alopecia since I was 13, so can completely sympathise with what you are all going through. I have worn wigs since I was 21, but last year took the plunge and went for 'a system', at the age of 48. It's revolutionised my life, and I love waking up with hair! The clinic I go to is always full of other women, all ages and none of us models! I've since started a new job, and have to be in the public eye quite a bit, and now every time someone admires my hair I tell them ( which I never did with wigs) and no- one believes me till I show them the minuscule clips. It's high maintenance, expensive and time consuming, but oh so worth it, if you know you're in for the long haul with hair loss. Wishing everyone luck with the solutions you are trying - obviously it would be much better if my real hair would grow back (the back of my head is great - my loss is on my crown and my temples), but thought I would share what's worked for me.

Moonbells, sorry to hear all you've been through. Stress certainly takes its toll on our health and hair. Getting your ferritin levels checked is a good idea.

Womens, thank you for posting your experience. I am sorry you lost your hair so early but it is great that you have found a solution with your extensions. Can you tell me a bit more about how they are put on? Does your hair need to be shaved and do they cause damage to existing hair? How often do they need to be redone? It is good to hear they could be an option.

moonbells welcome and thanks for your post.
I don't understand why your GP "won't do" your ferritin test, it seems unfair
If you feel tired all the time and don't eat red meat I would say it's really likely that your ferritin levels are low, but you won't know for sure until you do the test.
I am supposed to have mine done but I haven't got round to it yet (I'm a bit scared that it will come back super high and therefore that there is a sinister reason for my hair loss).
I don't tend to feel tired really but I have to say my diet hasn't been the best lately, and I rarely eat red meat (well I do now!!)
Womens great to see that there is an alternative, I'm pleased for you, you must feel so much better!!
Quirrel thank you so much you are what I call a really positive person and you really made me feel better with your post.
Regarding dermatitis, did it actually cause your hair loss?
I posted on another thread recently about dry shampoo having a possible thinning effect on hair (I was using it A LOT) and while I was still using it, my scalp was sooo itchy and everytime I scratched there was always a lot of sebum in my nails (gross I know). Do you think there might be a link?

Womens would you mind telling us where you had your extensions done? I am thinking of going down this route but if there's a cheaper option than LE I'd be delighted!

Wonder if someone can help me...

I heard its pretty normal to lose hair after giving birth but I'm 13 months down the line and my hair falls out so much! I hate brushing it cos I feel like my hair is lighter once I'm finished! When I wash it a lot comes out I've got regrowth tufts all over but more and more is falling out! I notice my pony tail is much much smaller than it used to be! Anyone else had this? Should I go to gp?

I live in the north west, and Lucinda does have a clinic here, but I went to Hair Solved - I believe there are a few branches throughout the country. The initial consultation was free, and you need to have some hair I think, to attach the web type thing to. That's fitted over your crown, the wispy bits are pulled through and then secured in place with teeny tiny clips, done with little pliers. Then the extensions are sewn on, row by row, with the parting bit on seperately. It took all day, and you have to have a fringe. It was then styled, and I left with swooshy hair. This part cost £1500 (I know!). It's meant to last 2 years, and after 18 mths mine is really fine.
I have to go back every 6 weeks, and they take out the clips and they are replaced, so it stays tight. This costs about £60 - which my friends tell me is the price of a good haircut. After about 6-9 months it's all taken off, your scalp gets washed, and it was yuk, and the system is realigned to fit perfectly.
So, as I previously said, it is expensive and time consuming. I style it most days with the Babyliss Big Hair, curl it with heated rollers or sometimes nick my daughters GHD's. I worry about the on going cost, but it has changed my life. I appreciate it's not for everyone at these prices, but if you are thinking about it I would recommend. I've seen some ladies whose hair has grown back, and they don't need to continue, and I think I secretly hoped that mine would have when they took it off, but it hadn't.
I am a complete technophobe, but I will try and put some photos on my profile tomorrow if anyone would be interested in seeing how it looks, but will need DDs help. I MUST reiterate I am not a model - a middle aged mum of 3 grown up daughters!

Coffeecake- YES, absolutely there is a link!! Seborrheic dermatitis commonly causes hair loss because the sebum "chokes" the follicle and/or actually pulls the hair out by attaching itself fast to the hair, and when you brush your hair normally all the loose sebum obviously gets brushed out (it's a bit like traction alopecia in a way, in that it's more of a secondary "reaction" than organic).
If you still have this problem, I would focus on that because my situation has become 10x better since I started tackling it. Use Nizoral, Le Petit Marseilleise anti-pelliculaire blue shampoo, Body Shop ginger shampoo, whatever works for you. A mixture (changing every month, every two months or so) is good to keep the condition on its toes. Often it's the cheap stuff that has good effect. Nizoral is shockingly prices (for such tiny bottles, ditto T-Gel) and it's not the best, like I said already. I've cut out all harsh shampoos which aren't supposed to help with dandruff and I've completely got rid of the dermatitis on the sides, which were the worst areas before. I was so relieved when I found out it was this because although it takes a lot of trial and error (some people cut out milk, try oil pulling....), it can be v. effectively controlled.

I wasn't positive at all two years ago.....but once you've struggled with accepting something for ages, it all just clicks one day and you think, "really? I was worrying about this? why!". I know it's hard to aim towards when it's getting worse fast, but often it isn't getting that much worse. We just think it is. We see ourselves muuuch more critically than we should. I hope you see some improvement soon, hair loss is a bastard.

Quirrel thank you, I am using Aveda Invati at the mo. It supposed to exfoliate the hair and it seems to help a bit with the hair loss. Really pricey though
I heard of "Le petit Marseillais" (I come from Marseille!) but not the Anti dandruff one. Do you get it from here? Otherwise I'll ask my mum to send it to me. Must be cheap too.
How often do you wash your hair would you say, and how quickly does it become greasy. That is the first thing I noticed, my hair being oily really quickly compared to before.
I think the problem with using a dry shampoo for years is that while my hair looked clean it was in fact greasy and the grease or sebum accumulated into the follicles.
My hair is DEFINATELY thinner where I used the dry shampoo more as well.
It caused my hair to itch a lot and created some sort of thin layer of sebum on my scalp. If that didn't cause my hair loss at least it contributed to it.

Hello all
Haven't read the whole thread, but enough to want to give my "twopence worth". I have FPHL - genetic hair thinning. My hair still covers my head, but has about half the volume it used to have. I was diagnosed when I was 30(am now 37) - I went to a top dermatologist, head of the Dermatology dept at an extremely well-regarded teaching hospital (so really knows his stuff) and have been a few times since to see if there is anything more they can do.

What he said was: almost all cases of female hair thinning (not dramatic sudden loss (alopecia aretea), or post partum hair loss(telogen effluvium, which corrects itself) are due to hereditary hair thinning. Not low iron, not lack of sea kelp, not stress. It is a weird and well-kept secret that female pattern hair loss is actually quite common - 1 in 10 before the menopause and about 1 in 4 after.

What he absolutely emphasised was: there are many so-called cures out there - almost none of them work and don't waste your money, tempting though it is. The only thing that has been medically proven (in many studies) to have some effect is Regaine 2% for Women (tho it tends to slow down hair loss rather than grow new hair). There are also some anti-androgen pills containing cyprone(sp?) acetate (I was put on Dianette for a year) and a drug called spiralactone which may help to slow it down. Other than that, nothing works. He said, awful though hair loss is, don't make it more awful by throwing money down the drain. So I wanted to pass on that message. Save the money to invest in really good hair extensions further on down the line maybe?

I also wanted to add that a styling product I have found really good at concealing the thinning patches is Fulmore , a bit like dry shampoo but much less powdery and more thickening.Pretty easy to use- spray on and secure with hairspray. It colours your scalp , making the contrast between hair and scalp less. It wouldn't be good if your hair were really thin, but good for cases of mild thinning.

FPHL is an absolute curse, and I share your feelings of depression and despondency about it. But I hope there are things in the pipeline. In the meantime, don't waste your money on anything that is not medically proven in numerous studies.

Womenandchickens - that is very interesting. Good to know if things get bad there are other options - even if they are expensive.
MyDD who is 19 has lost loads of hair over the summer and is very upset by it -the hair that is left is also not growing longer - the Gp has been a bit dismissive - "stress of exams", but she has exams every year and has used Perfectil for the past few years and although until the summer was a veggie she always ate very well - she has started to eat some meat and fish and has bought herself silica, Floradix and biotin - any experience anyone? Is this vitamin overload and will actually be bad for her?

She does have some fluffy short regrowth at the front but the rest is very thin (all over) . Wish I could help her more

Though there are some negative reviews on the internet.

elisio i agree with everything you have to say. I have been there done and got the t shirt. You keep trying different things, you keep buying diff shampoos. Telling yourself its stress, its iron, its over processing. Googling, and taking vitamins. If its FPHL you are wasting your time.

I am under a trichologist at one of the best clinics in London and i am going to stick with it. They have been very honest and told me i wont regrow all the volume i have lost (touch wood mine is mild and not noticeble if you didnt know me well before) but the hormone drops i am on will halt it and you may regain maybe 15%
Personally i dont agree with hair extentions as much as i would love them, i think like fake nails they cause more damage than good in the long run.
I have gained good advice from my trichologist. I do now eat more protien, i use good hair treatments, and washing my hair every day or at least every other day makes a huge difference for the better. I can now with a good hair cut, good hair products and well placed hilights get a fair bit of volume going.

I have bad days where when im ill or in need of some fresh hi lites where it feels thin and i am reminded of where i am but from when i first visited the clinic to now there is a small but definate improvement. Whats the alternative? Expensive though it seems £50 every 50 odd days is not that much to pay if it slows down the inevitable.

Quirrel thank you, I am using Aveda Invati at the mo. It supposed to exfoliate the hair and it seems to help a bit with the hair loss. Really pricey though
I heard of "Le petit Marseillais" (I come from Marseille!) but not the Anti dandruff one. Do you get it from here? Otherwise I'll ask my mum to send it to me. Must be cheap too.
How often do you wash your hair would you say, and how quickly does it become greasy. That is the first thing I noticed, my hair being oily really quickly compared to before.
I think the problem with using a dry shampoo for years is that while my hair looked clean it was in fact greasy and the grease or sebum accumulated into the follicles.
My hair is DEFINATELY thinner where I used the dry shampoo more as well.
It caused my hair to itch a lot and created some sort of thin layer of sebum on my scalp. If that didn't cause my hair loss at least it contributed to it.

I've never seen Le Petit Marseillais over here, so yeah, I'd ask your mum or order online. You can get it from supermarkets, it's in a blue bottle, smells nice and a little goes a long way (like most gel shampoos really) although I use lots in the method I described. I got mine from Carrefour in the summer and I've used about 3/4 of the bottle

I'm supposed to wash it every other day, but I get lazy and sometimes leave it 3 or even 4 days because atm it's much better. It does come out more on the 4th day, but that's probably only because of the buildup (I don't brush it, it's long and straight so doesn't look too bad, I hope!). From when I was 9 it started looking greasy on the second day, maybe even the first. It's definitely slowed down now. Well, of course it looks more oily, it's all sebummy!
The thing is, my mum told me that it was falling out because I was washing it too much so I slowed it down and washed it once a week for half a year. So of course the dermatitis got really angry and that was what made it fall out, and I was wondering why on earth it was getting steadily worse. Grrr. She still thinks she's right. Anyhoo....

Can you get yourself to a dermatologist and sort out a plan/get a prescription for the expensive shampoos? Mine was a bit rubbish, but I did get a prescription and "diagnosis" within two minutes of her yanking at my head (whereas my GP checked very softly and carefully and said it was fine and we'd better check my iron levels yet again ). And stop using this devil's stuff, dry shampoo! Unlucky but we just don't have the heads for it. At least you know that it's probably not genetic. Which is a very good sign, because it's non-scarring then.

Jane

The only thing I have to say isn't particularly helpful, just that biotin only really helps if you have a biotin deficiency, which is very rare. Bloody expensive for something which probably won't have any effect. But the regrowth is a very very good sign! It takes time! as does anything.

And also that since she's so young and it's not alopecia it's very very likely to grow back, whether soon or not so soon. Do reassure her that even if she can't know exactly when it'll grow back, she'll probably- and I know this sounds stupid and so unhelpful- develop a new mindset, where it doesn't matter and you go with the flow. But in the end, it's all the mind, what counts. If it's not tooo thin, she could try a "neutral henna" treatment, which isn't really henna I don't think, but which coats the hair, protecting it and making it look thicker and fluffing it out. When I did it, I freaked out because when I had to wash it out, a ton of hair went down the plughole, but when it was dried and everything it looked 2x as thick as before. Worth a try.

I know exactly what it's like to be so scared that it'll keep going and getting thinner. You stop mourning the hair you've lost and just worry about what's going to happen. You just don't imagine that you could stop worrying about it, but you do reach a "zen" point. And I have to say I think I've become more confident through this- not caring so much about things like this, being more able to deal with little things and shocks, knowing that your mood is surmountable at times, even if you think it never will be. It's a big stepping stone.

I agree Quirrel, it's a big challenge to go through but I guess you feel stronger at the end of it?
It's funny you said that, because many women say that the hair loss has really damage their confidence but for me it's the other way around if that makes sense.
I feel more confident and I am more myself.

Thanks for that Quirrel. She was thinking of dyeing her hair or getting it cut shorter (just about shoulder length now - but always tied back in a tiny tiny bunch). Using Henna is a good tip.

I too think the regrowth is a good sign, but when you are young you want everything to be alright now! I am worried that she is taking too much and too complex a combination of supplements - she has been feeling nauseous and dizzy the past few days and I am concerned it could be one of the pills.

I do hope she learns to conquer her anxieties and becomes more zen about it like you and coffeecake. She is quite a stressy person and always wants to look thin/normal/pretty although she she is all those things.

Zen?? Thanks Jane I'm flattered but I am completely the opposite. I am a complete stress head.
Although this is positive because it's telling me to slow down in my life and to not worry about things, and yes, in that sense I guess I am getting a bit more relaxed, but Zen... I wish
I think if your daughter has regrowth it's an excellent sign. Has she tried Floresene? I've just started that and I'll tell you if it's making a difference.
I know it's worked for another MN.
I am wondering whether it would work for me though as I don't think my ferritin levels were that low (I haven't had the test done yet but I never feel tired or anything so I doubt I lack iron), but we'll see anyway.
If your daughter was a veggie that's probably what it is. Has she had her ferritin tested?

Quirrel, I google "Seborrheic dermatitis" and they said that it's often a kind of yellowey or white scale. I have realised that I sometimes get it in my ears (not the ear drums but the rest of the ear IYSWIM) and in my eyebrows.
Also my dad (65) gets it on his scalp, I noticed one day when I cut his hair. Maybe it's hereditary.

Maybe I got it in my scalp too then without realising. The other day the top back of my hair felt itchy so I scratched it and I thought I could feel some scale but I thought I was imagining it.
Did you get a few pimples in your scalp too at all? Sometimes when an area of my scalp is itchy and I scratch it I feel a little blister type thing, very very little. I assumed it was an ingrowing hair but I was wondering if anyone has had that?

Quirrel is it this one ?

The one I use is more turquoise....let me have an Amazon...(doesn't really have the same ring, duzzit)- this one, just had to scroll down. 9 euros v. steep though! Was 4 euros in Carrefour for me.
Are you French moi aussi, ben demi
Yeah, pimples, which I originally thought were caused by lice (yack).
SD can be severe or not severe at all, so you may only notice the side-symptoms (if that's even a term!). The pictures on Google images are horrific, mine was never like that. My dad had it at my age (teens/early twenties) too.

marking my place for later.

I've got androgenic alopecia and shaved it all off and wore wigs for a year because I needed to take control of what was happening.

My hair loss started after I came off citalopram this march... I posted a thread about it already but forgot to say about coming off the meds I am glad I am off it though and feel happier than in ages. I am going to get a test for under active thyroid and I have started taking a multivitamin that has 100% rda of iodine and iron. I am a bit scared at how fast it is falling out!! Just grew out my bob finally so don't really want to have to cut it

Elisio did any of that stuff actually work for you ( dianette etc.)?

Hecate I can totally understand you doing that - one of the worse things about this condition is not knowing when it's going to stop. How are you coping now?

I had my hair cut yesterday and actually plucked up the courage to talk to my hairdresser about it. She was lovely, and in fact suffers from the same thing so really understands. I felt so much better just having talked to her about it.