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...

Christ, ChicMama! I'm due to go off citalopram soon, now I'm feeling a bit scared! switching to another SSRI soon, don't want double the shock.

I'm fine. I now have a short 'funky' crop that brings my hair forward from the top of my head and creates a fringe that sweeps sideways, so it disguises the shiny scalp

People don't know how much it affects you, I know it's only hair and that's what I kept telling myself, but being a balding woman is shit.

Quirell - I have no idea if it is related just saw some other people mention that going ON citalopram made their hair loss stop so I'm just speculating. I have lost weight since coming off it and been less stressed not more so idk! I think mine may be thyroid related but going to the doc to find out.

^ ah well, thanks for replying! Everyone's different I guess. Glad the change is working out for you in other ways, at least!

If it's any consolation to anyone, when I see a women (young, old, middle-aged) with visible hair loss, I never ever think it makes them look bad. Really. If they have frowny wrinkles or frumpy clothes, I think they could look better, but if you're thin on top or your hairline's far back, it just doesn't make much impression on me. This might sound far too condescending! But thought it might help.

Quirrel no it's cheap! If you look properly it says "Lot de 3".
So for 9 euros that's not bad. I've sent my mum the wrong link though I'd better correct that.
By the way did your receding hair line "unrecede"? I think I have lost about 1 cm of mine. I do think it's growing back though since I've stopped the dry shampoo and started shampooing regurlarly.

Yes, it did. I have more hair there, and you can't see through to the scalp in bright lights anymore, though there's bits at the front that never grow properly, but they're not fluffy baby hair either. Might post a pic if I find one from before.

Ah okay! I might invest in some then...

It's like me, it's weird, it's like normal hairs growing back on the hairline and even where the hairs had stopped growing but patchy IYSWIM.
And lots of tiny thin hairs growing underneath. I've got lots of regrowth all over as well, of different lengths. Do you think that's a good sign?
I definitely think that I had a bit of dermatitis because after washing my hair sometimes my scalp looked pink at the hairline. And I had what looked like a lot of dry and flaky skin there.
When I lost a lot of hair my scalp had a pinky rosy tint to it.

I did something wonderful yesterday, I washed my hair vigourously at first (that's what I've read to do on the internet to get rid of any dead skin or scaly bits) and at the last rinse I used cold water.
My hair now looks SOOOOOOOOOOO shiny, shinier than it has looked for a very very long time. And healthy.
I now have a cold though
By the way my mum always told me to try and wash my hair only once a week too, as it could damage my hair and I used to listen to her.
She didn't have greasy hair like me though so she could afford to do that.

I bought Le petit Marseillais BTW and paid for postage, while I was at it I bought my DCs the DVD of "Tatie Danielle", it's funny isn't it?

I have Female Pattern Baldness which gets me down at times, I am only 25 and it started when I was 22, 18 months after having my second child. My periods had been gradually getting more haywire for years, many miscarriages I just couldn't fathom why (but now I'm convinced it will have been hormone levels), and despite not bf I hadn't had a period in 14 months, hair falling out but not yet noticeable, skin getting worse, hairy chin etc. Still GP wouldn't test me for anything, just said "What makes you think you have a hormone problem? You have 2 young children, Many women have irregular cycles, you are not overweight".

Eventually I went to another GP who did hormone blood tests and called me back a week later telling me my hormone levels strongly suggest PCOS / hyper androgenic state. Confirmed by scan showing ovarian cysts.

I was put on the pill Marvelon which helped immensely but gave me headaches so I had to stop it. When I stopped it the hair loss came back with a venegance

I did some research and asked to be referred to a specialist reproductive medicine clinic. They have been absolutely brilliant and thorough, I am under a consultant there who really takes the problems seriously and the impact loosing hair etc can have on a person's life. I am currently on Mercilon (lower dose Marvelon) and a drug called Spironolactone (actually a diuretic but has the side effect of blocking androgens). I do see benefit however my hair is receding at the temples and my crown is thin so I have to watch what hairstyle I have and it is very embarrassing if windy.

At times I feel so down about it, my testosterone levels are naturally half that of a man , and we women are only supposed to have small amounts.

The combined pill masks all the symptoms for the moment as it gives me oestrogen which I need but I'm well aware I can't take that forever (most GPs don't like you on it above 35 although some will let you continue with no risk factors but you can develop risk factors like high blood pressure at any time)

The Spironolactone helps too but has the side effect of making you pee all day, you have to get blood tests as it can be dangerous in increasing potassium levels in your body and affecting your heart, also it has been linked to cancer in rodent studies.

The doctor says if I stopped these I would go back again, it doesn't cure it.

So I have basically resigned myself to at some point having to wear a hair system / piece / wig. I have researched lots of types, and it helps me to know there are lovely natural looking wigs out there (I have a friend who suffers from pulling her own hair out and wears them) and that is an option if needed I wouldn't hesitate to get my own hair cut really short and wear one (although can be expensive).

It's really not fun, I empathise with everyone on this thread going through this and hope we can find solutions.

I too get the weird tingly, itchy, hot , pink scalp in the areas where I get loss. There is so many of us saying this we can't be imagining it!

I'm sorry for you Saffron, welcome to the thread.
I thought hairloss due to PCOS was different to Female pattern baldness though? Bit confusing.

Thanks.

Sorry, you are correct, it is Androgenic Alopecia I have but I usually say Female Pattern Baldness to friends and family etc as otherwise they don't have a clue what I am on about

PCOS causes Androgenic Alopecia (excess male hormones 'work' on the scalp in the places men tend to go balding). With Female Pattern Baldness it's pretty much the same thing really, but can have a genetic component and run in families and I think that's more due to the sensitivity of the scalp to normal amounts of hormones. Whereas Androgenic diagnosis usually means the hormones have been tested to have too high androgens / free testosterone (mine was when untreated half the level of a grown man and woman are only supposed to have small amounts).

At least that's how the consultant explained it to me. x

Same symptoms I think. If too many androgens is the problem, meds usually mask it and you can have quite a full head of hair but they are really full of side effects and after you stop taking them things will revert back. Low GI diet helps Androgenic Alopecia. I also use Nizoral Shampoo like someone else said up thread. I don't see a particular difference but I figure I may as well cause I need to buy shampoo anyway!

I've tried on a friend's wig and it looked ok, natural enough, especially if I wear a hat over in winter. And she has almost a shaved head (due to hair pulling) and uses tape in places and she assures me that with strong tape they don't fall off. So not the happiest thing, but with that information I do feel a bit better (although her wigs cost her between £700 - £1500 a year , guess it's worth up to £30 a week though if it helps you).

Wow that's steep!
I thought Androgenetic Alopecia was the same as Female pattern baldness.
Anyway, neither of them are very nice.
my hair loss is weird, I still have a full head of hair, but I've lost about half of the amount I used to have.
The thinning is diffuse, and EVERYWHERE (even eyebrows and arm hairs.) I thought it might be due to Seborrheic dermititis as I have got very oily hair, but now I'm not sure as I am still getting that "tingling/burning" at random places, on and off.
I am back to square one, and trying not to think about it. I'm scared as well because the regrowth I am getting is a mixture of thick strong hair and fine ones. I'm frightened it might be part of the miniutarisation of follicles.

Just joining in this thread.
My hair started thinning as a teenager and now (aged 30) I have the most pathetic thin pony tail. What makes it worse is that the hair I do have is fine, flyaway, frizzy and brittle. I try not to treat my hair but because it's so thin it looks greasy if not washed every other day and I find it very hard not to straighten at least the front bits as that is the only way I can get it not looking totally dreadful.
I have a few patches where the hair has snapped off and is not really growing back, including at the front.
Even after a trip to the hairdressers the best my hair ever looks is "not terrible".

My mother has very thin hair so I think it's genetic.

It does get me down and I know this probably sounds pathetic and really vain but I don't like having my photo taken because I'm self conscious about it. I try to keep it in perspective and concentrate on the things i like about myself (we can't have it all!) but sometimes I do feel down. It makes me feel unattractive to DP too, especially as his sister who he idolises has the most gorgeous thick mane of hair down to her waist!

I know it will probably get worse not better and I have considered getting a wig or hairpiece - not for everyday use but for when I'm going out and want to look attractive but I'm worried about reactions from friends.

Thinking a wig for when I go out could be a good investment and save me having to straighten and style my fragile hair to death. I feel like I need to conserve what little I have left.
Has anyone else done this? Where would you buy a wig from? No idea where to start!

I wouldn't know Toffee, but I wouldn't give a s...t about reactions from friends, if they are friends they'll support you.
I saw a program the other day where ladies where having some hair pieces put on as a semi permanent thing, and they looked AMAZING and it looked so natural.
Don't feel bad compared to your DP's sister, hair is not everything. A lot of people don't even take notice of hair.
What counts is what's inside you (sounds corny I know but it's true).
The inner light that makes you glow

Sorry spelling mistake: "I saw a program the other day where ladies WERE having some hair pieces" not WHERE.

Toffee just a thought have you had your ferritin levels checked?

I'm looking into having this done (link below) a friends sister has had it done and she loves it.... when i have more details, i'll post!

www.hair-solved.com/

I'm seeing my doctor first, to see if they can advise anything and then will be speaking with friends sister

Quirrel I got that shampoo through the post, I'll try it tomorrow and let you know.
It's weird at the moment even straight after washing my hair, if I scratch my scalp there is still a small amount of sebum in my nails. It's annoying as I am definately washing properly.
Do you remember how long yours took to grow back? I am really impatient about it and wondering whether it will grow back at all

Hi just updating a little bit: I've had more shedding which has thinned my hair even more
I'm feeling very down about it as I was really optimistic in seeing this new hairgrowth all over. I just thought that it was due to seborrheic dermatitis and that if I controlled that, my hair would be fine.
But for the past 3 days I noticed some more thinning, and last week I was getting that tingling A LOT and the dermatitis really flared up.
When the hair falls out, I notice some yellowish scaly type thing attached to the root (not every time) and it pulls out so easily.
Also I noticed some yellowish scale in one of my ears and the nose end of my eyebrows are awfully dry and dandruffy, although my hygiene is excellent and loads of yellowish dandruff.

The fact that it carries on shedding, and this tingling is making me think that it could be Androgenetic Alopecia.
I got in contact with a dermatologist so hopefully he'll tell me what it is.
With AGA do you see new regrowth also? By new regrowth I mean strong hair, not the wispy type.
I would like to know how everyone else is doing, Sheila, Medal, Pinot etc...?

Coffee, I get the tingling with Androgenic. Also before I started the combined pill and/or the Spironolactone, I had VERY greasy hair, no matter how much I washed it. If it is Androgenic it is the androgens making your skin over greasy (also on scalp and causing acne on the face often, like teenagers really). The DHT (something to do with testosterone) on your scalp causes the follicles to shrink and 'minimise' particularly at the temples and crown.

I get wispy, "baby hair" regrowth but that's it.

If you suspect AGA, it's an Endocrinologist you need, but first you can ask for simple blood tests at the GP to confirm any hormonal imbalance. Ask for hormone profile - LH / FSH , and free testosterone particularly. For example - Normal Free Testosterone in Women is 0 - 2.2 pg/mL . Normal Free Testosterone in Men is 6.6 pg/mL - 26.5 pg/mL. Mine was 5 pg/mL. So does that make me nearly a male? . If you get an abnormal blood test result you will be eligible to receive treatment, so I'd check that first if you suspect AGA x

I've also had more shedding at the front now this week, despite being on treatment (Mercilon pill plus Spironolactone and various vitamins). It is noticeably see-through now at one of my temples . I'm hoping that since I've only been on treatment since July, it hasn't had time to kick in yet with hair growth cycles etc.

It does make me sad, especially with the recent breakdown of my relationship and worrying that no one will want me now . But I have been consoling myself with the fact that there are options like wigs and systems which seem to look very real both online and on the real life people I know who wear them. Not the same though, but at least an option.

Hope everyone else is coping OK x

Thanks Saffron, the reason why I'm asking is that the regrowth I am getting is NOT like baby hair. It is full, dark, normal, strong hair (I even spotted a couple of hard hairs of about 2 mms that looked like regrowth from DH's beard ). I plucked out one of the new hairs (mad I know) to see what the root looked like and the follicule looked strong and the root looked black and healthy.
So that's weird isn't it?
I have had all the tests done, including testosterone and it's all normal. All my hormone levels too. I have an appointment to have a ferritin blood test this week.
You WILL find someone that deserves you, I asked DH last night "Would you still love me if I wore a wig?" and he said "yes of course".
So it made me feel a bit better.
I feel very hormonal at the mo as well, my period is late, and I am very very tired from lack of sleep.

Hi guys just another little update (it just seems to be me at the mo [red]).

I am going to see a GP again this afternoon as I would like to discuss a few more things with him and maybe get a referral to a derm.

Also, I have googled and seem to have LOTS of symptoms of overactive thyroid.
Irregular period, irritability, extreme anxiety, worry (this is from before I realised I lost my hair BTW), cold hands and feet but suddenly excessive sweating (I've always struggle to sweat in the past), hot flushes, palpitations, sudden burst of agressivity (unlike me), dry itchy skin but oily on forehead and nose probably due to excess sweating and of course, the best... hair loss.
That also sound like the menopause doesn't it, so I want to ask him if the Thyroid tests are definately correct and what exactly the results are.
Also I completely forgot about it but about a year before having my first child I came of the pill Ovranette and experienced extremely erratic period (which I knew they would be as they were before taking the pill).
Went to GP as I hadn't had a period for 3 months and he said I probably had PCOS as I had all the other symptoms like excess body hair, deep voice, skin tags etc.. (I was skinny though but I think skinny women can still get it).
He ran some blood tests which came back with (I think) a slight hormone imbalance (this is 11 years ago so my memory might be wrong) and in the meantime I fell pregnant, so we ended up focusing on that more, and then I moved and changed doctor so the PCOS was never investigated.
Because I fell pregnant I just assumed that it wasn't PCOS but later I realised that you can fall pregnant.
The reason why I didn't think immediately "PCOS" with this hair loss was because the rest of my body hair growth seemed to have slowed down as well, and I think with that condition you are supposed to have more body hair (although I've developped more hairs on my chin).
So now I am more confused than ever, but I'm kind of determined it's hormonal.

Sorry smiley didn't work I meant to put blush not red that's why I can't concentrate, it must be the lack of sleep!