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...

I'm 41. I noticed I was losing hair at about 34.

My goodness Conflu, it took you a while to get diagnosed then? Was it really gradual?
Mine I think must have started quite abrubtly as only back in July I remember using my hairdressing scissors to "thin" my fringe down as it looked too thick.
How annoying I was taking it for granted at the time.
Also I don't know if any of you ladies have experienced the same but the hairs on my body and face seem a lot finer and thinner too and there's less of them. Like for example my eyebrows, my eyelashes, hairs on my arms and legs.
Also my bikini line just won't grow anymore (bliss).
After taking Perfectil for almost 2 months now though my eyebrows are fuller, and the hairs on my arms are sooooooo long and so are my nails. But still not as many of them as they used to be.

It was gradual, I had attributed it to stress (I started noticing it around the time my father died), and then I went into fear-based denial - until my then DH mentioned it to me, at which point I burst out crying.

I wish it affected my bikini line! Alas, no [hgrin]

I'll join too.
Nowadays you can see my scalp. How depressing. :(
I haven't seen anyone about it as I have been pregnant or breastfeeding for a long time so I assumed tests wouldn't be reliable and also I assume I wouldn't be able to take anything for it.

I am so paranoid about it and so jealous sometimes of everyone else, people with hair. I feel that I look really... unhealthy. I hate it and I hate photographs of myself in which I look almost bald.

cries

I am finding this thread very helpful, although so sorry that this is affecting so many of us.

Coffee, that is good news indeed about your derm apptment, you must be feeling relieved/reassured. I haven't noticed any changes in body hair though, with the vitamins I am taking it seems to be healthier every where else than ever! Could it be hormonal do you think? Did you tell your dermatologist this?

Volume, could it be postnatal hair loss in your case?

I don't think I posted my latest update. I saw a trichologist for the first time in London last weekend and she was very good. She reassured me somewhat that I was getting lots of new growth all over (and took ages to show me it to convince me too) and that my hair is going through this awful shedding because of my low carbing a few months ago - which will hopefully stop in time and there was nothing I can do apart from wait. The trichologist I saw didn't seem to be too worried about the diagnosis of female pattern hair loss that I got from the dermatologist (biopsy). I am trying to feel more relaxed about it all as the stress definitely doesn't help and will see what happens over time. I also got the Wella serum someone recommended earlier in this thread, keeping everything crossed this helps.

Coffee my ferritin level would be classed as normal by a GP because at 20 it's within the normal range, but the range is from 10 - 100 or so and PK said you need levels of over 80 for optimum hair growth.

Interestingly, she thought my Mirena coil might be a contributing factor as many progesterones are actually powerful androgens, manufactured from male hormones! I'm not having mine removed though as I've only had it in for a couple of months and the effect on my periods has been fantastic. Also this was just her opinion rather than something based on studies.

Might be something to consider though if you are on a progesterone-only pill, or considering a Mirena.

Sophy so sorry about you losing your dad. Hope you are coping OK. You don't sound like a nutter at all and I bet you look fab with your new hair.

Sheila - I started noticing my hair loss after I took myself off all hormonal contraceptives. Not sure if there's a link there, but fwiw ...

I've been losing mine for two years. I attributed it to stress as my dad is terminally I'll and my DH was made redundant. I had severe iron deficiency anaemia, had a blood transfusion (4 units) and have had referrals to gynae (all clear) haematology (getting there) and currently waiting for gastroenterology appointment. I have iron infusions by drip to increase my ferritin. It gets me to about 70, but drops 10-20 points a month until I'm back to 10-20 and have another five week curse of iron infusions (can't cope with iron tablets so have a drip).
I'm hoping they'll finally work out how I'm either losing blood or not absorbing iron from food and then my hair will thicken up again.

Medal I'm so pleased for you! How come you didn't notice the new regrowth then? That's what they say isn't it, the shedding doesn't matter as long as there is hair growth.
I would be tempted to believe the tricho if I were you. It seems more likely.
I thought it was strange that FPHL diagnosis from your derm.
Yes it is good news for me I guess, but I can't help not believing her .
I guess I always thinkn of the worse case scenario.
I have no idea if it's hormonal or anxiety or something, although GP/derm looked at my hormone blood tests and said they were perfectly fine but my body hair is definately thinner and wispier (which I can't complain about).
Before my leg hairs were like darts the day after shaving them, and I used to have to shave every single day. Now I can wait 2 days.
Also I do suffer from chronic anxiety and stress head syndrome
So I am trying to relax about life now.
Sheila my goodness, you don't think it might be the Mirena? Did you notice your hairloss after you had it fitted?
I really didn't get on with the mirena coil at all, 4 and a half years ago I had to have it removed after 2 months, as it gave me soooo many side effects (mood swings, feeling low all the time which is not like me, anxiety was much much worse, no libido etc...) it was HORRIBLE.
I felt almost an imediate relief when I came off it.
The GP mentioned the dianette pill which blocks the androgens (sorry if poor explanation) if it is FPHL. Do you think that might help?

Hi Coffee, I didn't notice the new hairs as they're really hard to see without good lighting for me - but I have found that I can see them if I part my hair under the lights in the lounge. The excessive shedding is still continuing and I am definitely still getting thinner all over - hopefully at some point this will stop.... I think I do believe my derm as a biopsy is hard to get wrong but I am not sure that the FPHL is the reason for this shedding at the moment and its possible I have both things going on, lucky old me!

Eight, sorry to hear about your situation. Hope they figure out what is going on with your iron absoprtion soon.

coffee I don't think the Mirena can have caused the thinning as I noticed it before I had it put in, but it may be contributing to the speed at which I'm thinning. I seem to see less hair after every wash. I'd say diannette would be worth a try if your hair loss is hormonal.

I doubt I can get my GP sufficiently interested to try a hormonal solution for me.

I'm getting that annoying tingling/slight burning again on my scalp! In weird areas (on top and back of ears, on top and side of head).
It's doing me ed in (cockney accent!)
Does anyone get that? (sorry I've already asked that but no one has answered as yet).
I know it's related to hairloss (my MIL used to get it too but she said she had a lot more stress at the time) but I don't know what it means.

Hi Coffee, I have noticed it before, but it comes and goes. The lady at PK said it was because I'm 'yeasty'! This is true as I'm suffering from thrush ATM, and have had sebhorreic dermatitis in the past. I am using nizoral shampoo to combat this. Interestingly this is recommended as an anti-androgen on some websites so I figure it can't hurt

Not sure if this helps?

Hi, I don't get burning but occasional itching and soreness in areas. Sometimes it sounds really weird but I get scalp shivers, like goosebumps that start at my body and travel up into my head. Not sure if it's related.

I am going to see another trichologist this weekend for a second opinion. I am scared if it is AGA that I have that I need to start treatment to stop it. This is horrible, it is really affecting my mood and concentration, absolutely everything. How do you stop it taking over your life?

Oh my god Medal I get that shiver thing to, on one side of my head. I didn't think anything of it I just thought it was anxiety. What do you reckon?
It could actually be anxiety couldn't it? Are you the anxious type usually?

Actually I just looked on an anxiety forum and it looks like it's a common symptom of anxiety. Could it be because we are focusing on our scalp a lot?
Not sure.

I went through all the stress about hair loss two years ago.....not nice time at school and stress related dermatitis just made it waterfall out, I was scared stiff I was going to end up with nothing on top. My hairline looked like it was receding too. Scared myself silly looking at telogen effluvium pictures and reading about follicle minituarisation...(don't google!!)
Now I still have much less hair than I used to, and it's stick straight so looks bad on the second day, but it only falls hard in phases now, instead of all the time.....really worth looking into whether you have dermatitis or not! I can plait a strand just fiddling with it and pull three loose hairs out, but I won't get the awful sick feeling I would have got two years ago with it, I just don't care. You'd need three years to go completely bald, and I hardly see anyone with really thick hair, so keep heart!

I get scalp shivers (quite enjoy them really, like sneezes and pins and needles) and also something where you get nasty achey pain if you brush your hair the wrong way, occasionally- only goes if you wash it to kind of "reset" it. Got it much more often when I was little, so doubt it has anything to do with hair loss.

Oh and if you're finding Nizoral too hard, mix up some Body Shop ginger shampoo with water in an empty bottle and squeeze it all over your head, so the shampoo reaches everywhere- it's really good! Nizoral was okay but this is much better, it doesn't come back as fast.

Quirrel I know exactly what you mean about scaring yourself stiff reading about things online. I've stopped googling now it's not worth it.
Did yours grow back then? And what is dermatitis? I really don't want to google it I'm scared to scare myself

I don't mind the scalp shivers as such but now I know they might be related to hair loss I dread them.

Oh dermatitis isn't so scary, it's a skin thing, really gross! I mean, you can't get rid of it, but you can control it so much that it only flares up at certain times. Is your head itchy/is there lots of (sorry, yuck) sebum collecting at the roots? I was so relieved it was only that and not female pattern balding or something (at 15!!) but it took ages to get under control....
Umm....it has grown back, kind of! Well, not really. I still have a v. thin ponytail. But I'm just glad it's stopped now, who cares if it's not thick anymore.

I'm sure the shivers aren't related to hair loss.....

Googled for you and couldn't really find anything on shivers/hair falling out DON'T WORRY! just let it go....we have no idea how much our state of mind affects our physical wellbeing, whether it does or doesn't....but the evidence points to that it does.

I'm another mid-40s hair loser. I have long hair, and so it getting suddenly thinner was very noticeable. Earlier this year I noticed it falling out a lot. It was just after I'd had a bout of pneumonia. But even after I recovered, the hair loss didn't, but then I've been very anxious about my parents' health (Mum is in hosp with pneumonia as I type :( so the anxiety's not going to go anytime soon). I had loads cut off to make the ends seem thicker, but it doesn't help that much.

My usual growth cycle's longer than normal - about 5-6 years (it has to be to get it to bum length) and it's now 5y since DS arrived and I lost tons of hair (looked like I had a widow's peak at one point, I receded that much) and it all came back eventually.

I've started to notice wispy bits back at the temples, though not much so far. I think the combination of stress and work and family and the 5y growth cycle is all conspiring to cause the hair loss. But thankyou for the advice on ferritin and growth: I know I'm normal for Hb but GP won't test for ferritin. I may have to go back to multivitamins and minerals and see if it helps my tiredness and my hair. I'm semi-veggie so I don't get the red meat that might help!

Meanwhile I've been testing that Aveda stuff for MN and the conditioner def seems to make it appear thicker, though I'm not sure the rest is working for me. I guess I'll have my chance to talk when the feedback thread opens in a week or two.

I shall be lurking with interest...