Hair loss - so worried and scared. Anyone with any experience of this or suggestions? Desperate!

[MrEzraGoldberg]

Another shower and another huge amount of hair fallen out. I'm so worries about this - been going on for a while but has gone crazy over the last few months. Iron levels fine (100) though want to get up to 150, thyroid tests all fine.

Anyone have any ideas what might be going on here, or similar experiences? GP says hair loss does occur and seems unconcerned. At my suggestion he has referred me to a dermatologist.

I'm 50, not yet menopausal, and tried HRT over a year ago and because my hair fell out even more, had to stop it.

It's so depressing and on my mind all the time.

Getoffmylilo - So sorry to hear that you've suffered with this too - it's a bit of a nightmare, isn't it? As it happens I've just started on the NizoraI today. Used to use it then stopped. Agree with you about the 'normal' ranges in the thyroid tests, that's why I had my blood tested for a couple of things that aren't routinely tested for on the NHS (unless a very good reason to do so), some proteins or other. Did it privately. I was convinced it would be a thyroid issue (was almost hoping it would be, at least then I'd be able to address it) but no.

How is your hair now? Has it stabilised?

HRHPrincessMegan - it does seem like stress can have a lot to do with hair loss. The birds nest analogy rings true! So glad to hear your hair is returning to normal now, but gosh, two years after the stressful event? Quite a time to wait.

Yes, hair stabilised, although the paranoia still lingers! Perimenopause worried me as a few friends had complained of thinning hair and the whole thing just makes you feel somehow prone to hairloss it but seems to have had no effect (touch wood). I also have it shorter and choppier now so it feels thicker than it did back then anyway, which I like.

I still use Nizoral if my scalp ever feels itchy (rarely) out of habit so if it was scalp related I may be nipping it in the bud before it kicks off. I get a few non-secific dry skin patches elsewhere so I may just be prone to that type of thing. But I also sort of hoped it was a thyroid thing at the time!

I remember at the time lot of people kept telling me I wasn't losing my hair and it looked fine when it first started falling out but then later admitted they'd just been trying to be nice/helpful after the GP confirmed I had diffuse alopecia. I know they really were trying to be nice but it made me learn to go with my gut instinct about the whole thing, you know when something's wrong. I also got lucky with the GP who was really young and had premature hair loss, he was ever so sweet and completely mortified when he managed to pull a handful of my hair out without meaning to!

There's also a lot of hair re-growth products on the market these days, like Revita and Alepecin, which didn't exist back then so if (when!) everything settles down you can give those a go, you'll have a mane like a lion!

Getoffmylilo - can totally empathise with the lingering paranoia. When you've experienced something like that, you're always concerned it may happen again. You're right about going with your gut instinct - mine is telling me something is amiss, despite partner trying to reassure me that I won't go bald. And other people possibly don't notice as I use lots of products to disguise the thin patches, Toppik hair fibres is top of the list, plus the root cover up sprays that hide the scalp very well. I'm now concerned that all the products will be blocking the hair follicles though!

That poor doctor! Can't have been much fun for you either.....Just goes to show how easily the hair can come away though. That's why, although I really, really do need a hair cut, I just can't bear the thought of someone touching my hair.

Would love a thick lustrous mane!

Oooh... forgot to mention that I am also taking topiramate for migraines (can be used for seizures too.). Also a known cause for hair loss, but had been on it a long time prior to this. Coeliac disease and other absorption-related food allergies are known triggers as well.

About getting a haircut - I had a really shite experience with that one. At the height of it falling out I was desperate to get it cut shorter (it was quite long at the time). I just wanted someone to lop some off nicely without it looking like I'd taken the garden shears to it, but I didn't want my hair being combed when wet because that's when the most shedding occurred. Went to hairdresser, explained, they said hair needed to be at least damp, gave the job to a junior who then managed to comb more hair out than she was anticipating before going to cut it and yelled 'Her hair's coming out!' across the salon. I got up and left in tears. Chopped 6 inches off with kitchen scissors when I got home, then found a friend who'd worked in a hairdressers years before to just trim it for me after that - she would also give me a running commentary about how much regrowth she could see, patchier areas etc.

I need to get my bloods retested!

Get the results of your blood tests and actually research the levels yourself.

You say your thyroid is fine but IME what GPs say is “fine” is actually not optimal at all. They usually only check TSH, sometime FT4 and rarely check thyroid antibodies - you could have low FT3 which is the active hormone or antibodies which indicate autoimmune thyroid issues. Women at 50 are far more likely to have at least subclinical hypothyroidism and despite the name you can have a lot of symptoms before your levels go out of normal range.

I’d also get your hormone levels checked.

If you are low in vitamin D then a normal OTC vitamin D supplement won’t be sufficient to raise them - google the Birman D protocol, I have to take a high dose to get my levels into normal range.

I’d also get folate, B12 and your hormone levels checked.

If the GP won’t check all these things you can buy kits online for the tests you need.

I’ve learned over the years that women’s health issues are often ignored, minimised, there’s limited understanding of hormones and their impact on all aspects of physical and mental health. I’ve been suffering with a variety of health issues for over a decade which I’m sure are hormone related and if it’s not easily diagnosable by a simple blood test then you’re generally left to get on with it. I’ve been saving to go to a hormone clinic in London as I’m sick of being fobbed off. I hope you can get to the bottom of it.

Thanks, Sinkgirl - I paid for private thyroid testing as they tested thyroid antibodies. Free T3 was 4.1 and thyroid antibodies were fine. Everything in the normal range. It was because the NHS don't check for those things that I opted to do this.

Also had folate and B12 checked in same test and they are ok too, midway through the normal range, though will be looking to increase them anywas.

When I lost a lot of hair I think it was a group of causes: medication, stress and not eating enough (due to stress). The medication I still take from time to time, and hair loss is a side effect but now I'm less stressed and eating more it's not falling out the way that it was.

Getofmylilo - that's horrific You've just articulated exactly what I'm afraid of at the hairdressers. It's soul destroying. I would've done exactly what you did, left in tears. I often fantasise about getting the kitchen scissors and lopping a good few inches off here at home. Ironically, the hair I do have grows long very quickly, which I can't quite understand. It's the ends that get terribly tangled and then small hair balls have to be extracted.

I do hope that junior, if she's still in hairdressing, has grown up a bit! I live in fear of encountering just such a salon employee

Medichecks do a menopause panel which contains various hormones, thyroid etc. Not saying it is menopause but many of the tests are useful for these sorts of symptoms. Do you happen to remember what your TSH was? Mine varies massively by time of cycle, and time of day - should be done first thing in the morning before you eat as TSH drops by half by mid afternoon.

I know how frustrating this is, I just have to hold on to the hope I’ll get to the bottom of it.

If you can and you can afford it, make an appointment with Philip Kingsley's trichology team. They'll test you for several blood levels and recommend treatment from there.

I had the same, and it's now stabilised with hormone drops.

MrEzraGolberg - please please don't be put off by my experience, it was some time ago and hair loss in women has become far more talked about now, plus there's far more things people do to their hair which can cause thinning (extensions etc) so they're more used to dealing with thinning hair.

There are plenty of salons specialising in alopecia which are treatment based and something to think about if there's no improvement, but in the meantime for the purposes of just having a trim etc have a proper conversation with your hairdresser in advance - I only mentioned it in a panic at the appointment, big mistake - and if they sound vague about it all go to someone else. Be like a nervous patient going to the dentist - a sympathetic hairdresser will have a regular client out of you and you'll have someone on your team you trust. And if the salon environment itself seems too much to deal with get someone to come to your home - there's load of mobile hairdressers out there, again explain the situation first.

I've been known to cut my own hair since then as it happens, can just about get away with it (but probably where the 'choppy' bit started!)

I've been losing my hair & have just been diagnosed with underactive thyroid. I have been on Thyroxine a week not & won't really find out if it is working for a few months.

My blood tests were fine. I think the itching and burning was diagnosed as seborrheic dermatitis. Nice name. When it gets really bad I get red itchy patches round my nose.

As well as the vile shampoo I get prescribed betamethasone. It's a topical corticosteroid. The hair loss stopped over night with it. I still use coal tar shampoo and use the beta stuff when the itching flares up.

Gp diagnosed by looking at my scalp and from my symptoms.

SinkGirl - my TSH was 3.82. Free T3 was 4.31 and T4 was 14. It was actually Medichecks I went with for the tests, and am considering doing the hormones test too. Yes, it really is frustrating - so much to consider, so many possible causes. Feels like a massive project trying to pin down possible causes.

tilder - your hair loss stopped overnight?? Gotta get me some of that!! Seriously though, I hope when I do get to see a dermatologist, it's helpful. Am hoping it's not something that requires steroid creams as they were used on my as a child (I had bad eczema) and they thinned my skin a lot. Really glad you were able to get a diagnosis though, and treatment.

Often a full vitamin and mineral blood test is t done due to cost. Maybe something to consider. My hair loss was due to extremely low selenium levels. Once corrected, the difference was huge. Good luck.

tilder - meant to ask - with your seborrheic dermatitis, was anything visible on your scalp? Mind seems to be clear, as far as I can see, but obviously mine is an untrained eye.

andthentherewere - just bought some selenium today, as it goes. Though looking at t'internet, it seems too much of that can cause hair loss too. This is a minefield...

How did you find out about your low selenium levels?

Hi thought I would share my weird hair fallout cycle . My hair tends to fall out if I have low iron or b12 oviasly you say bloods are OK. so I cut milk out of my diet and most dairy lactose intolerance came back and then found my hair falling out again realised it was some vitamins I was lacking due to diatry cut out so started the dairy free milk and things and it settled. Then hair started falling out again and after a lot of thought found out it was dry shampoo so can't use that it could be something you have slacked with eating or just simply used a new hair product maybe. Just basicly need to think if you have cut something out or added something new. And stop it or add it again and see what happens.

Mine was linked to a salicylate allergy (in loads of shampoos etc). Some I stopped using anything containing salicylate I haven't had any issues.

Should say, no rash at all in relation to allergy but it does now trigger eczema on my hands if I use hand wash with it in.