Anyone got quite significant hair loss (female)?

[BernadetteRostankowskiWolowitz]

It started about 3 years ago and about a year ago I was diagnosed with female pattern baldness. Bloodwork was fine. No solution.

I'm now a year on and it's significantly worse. I'm mid thirties and don't quite know what to do. I feel like there should be a reason for it and a possible medical solution.

I don't even know how to do my hair to maxomize coverage. I'm conscious of doing anything in public that may display it (eg swimming, wearing hair down on a night out etc).

Doctors only solution is a specific shampoo which (is crazy expensive) has to be used every single day for the rest of my life.

My life is likely to last this long again, so it doesn't feel like a suitable solution.

Would a full hormone check indicate any reason/possible treatment?

If you have this, what do you do? How do you wear your hair?

The thing is op female pattern baldness is a perfectly normal part of ageing for some women as it is for men. Very often there's nothing medically wrong. I have it. I have a few short extensions, just at the back where it's naturally thickest, they would be visible in other places. They have made a big difference. The front is still very thin, but with a very wide headband and the extra volume at the back it can kind of look okay. I will definitely get a wig or topper in the future if needed.

I have traction alopecia had it since I was 16, makes me extremely depressed I have to wear wigs which look horrible and I hate it nothing available on the nhs so hoping to one day afford a hair transplant

I’ve got very thin hair at the front (my mother keeps mentioning). I had some bloods which showed I was low in vitamin d, thyroid came back fine, coeliac bloods came back clear (both my daughters have coeliac disease). I’ve also got a fatty liver though hospital doctor was hugely unhelpful. I’ve ordered a wig as I’m so sick of my hair. My dad also has thin hair, so did my grandma and my mum is thin in places so I suspect it’s genetic.

You say your bloodwork was fine - what was your iron level? I ask because women frequently fall within the 'normal' range for iron but they are still too low for optimum health. As an example, after blood tests years ago I was told that my iron was normal and I didn't need supplements. The normal range was 11-314 and I was 11! I pushed and was prescribed ferritin supplements by the GP.

Iron needs to be around 70 for hair to stop falling out and 100 for regrowth to begin (am unclear on the exact figures, they are approximate!).

A friend of mine had this. She was incredibly brave about it. After a lot of being fobbed off with a million potential diagnoses, it was early menopause (discounted several times along the way). She has the correct HRT now, and her hair is back. She looks fabulous.

My mum was told her bloods were fine for years. Eventually went private after significant hair loss and was diagnosed with over active thyroid.

A review of previous blood tests showed she'd had it for a number of years. As a result she has some bone thinning that could have been avoided

In the uk we are poor at diagnosing thyroid issues

Interesting. I've dug out the bloodwork from when I was diagnosed. Iron 36

I can't quite see the reference range on the iron as it becomes blurry when I blow it up, but that's quite low and you could do with increasing it. That's not to say your hair loss is solely down to low iron, there could well be other factors at play, but it wouldn't hurt to get your iron stores up, just to see if that improves things.

My colleague has this. She exhausted all medical avenues. She now has a woven in hair piece that looks amazing.

I would turn to hair topper or wig if I felt it would help me cope any better but I imagine it would be another source of embarrassment as it goes wonky or gets blown off plus where to go for help is another thing when even hairdressers in the area are rubbish at just getting on with a trim and not pulling it as it’s now so fine and tangles easily. As for doctors mine have just looked at me and ignored my concerns. I know I’m not over sensitive as several people commented on it after lockdown as the difference was so obvious . As for supplements I’ve wasted money on them an£ different shampoos. I’ve been trying for at least 7 years

Omg thank you so much for this post, I had major surgery in February and lost two stone in a couple of weeks and lately my hair has been falling out, it feels much thinner, I didn't know if it was the anaesthetic or the drugs I had or just the trauma of it all, any idea of this kind of hair loss is permanent?

Oh and I wasn't diagnosed with coeliac disease until I was 40, GP tests came back negative for years, eventually they did biopsies and genetic test and diagnosed that way, I was so lucky because during that test they found a very rare cancer in my duodenum that I never would have known about until too late.

@MissSmiley I am in the USA and took my 18 yr old dd to a dermatologist who has seen our family a few times because she has sudden hair loss. She had absolutely masses if hair and then suddenly lots was falling out, she never had bald patches but the amount of hair loss was dramatic, every day it was in the shower.

The dermatologist said that STRESS is a major factor for hair loss. She was the one who also said rapid weight loss can trigger hair loss, but she said there can be a delay of a few months before the hair falls out so people don't always make the link. During lockdown my dd list about 20lb and she was also under stress trying to do her senior year of high school at home without any socializing with friends.

Also what you are describing is a classic case of very late diagnosis of Celiac which is constantly missed. Celiac is actually linked to various cancers and other serious physical illnesses if left untreated.

Also regarding blood tests for iron, always make sure they check your Ferritin levels because I had normal iron levels for years but when they finally checked my ferritin levels (iron stores) they were extremely low and I was then diagnosed with anemia.

blog.labtestingapi.com/iron-and-ferritin-high-and-low-levels-explained/

That's so interesting, thank you for replying, the hospital stay was 5 weeks because of complications, it was very traumatic so that makes sense.

I don't think there are any known lifestyle causes for GIST cancer but it's so rare it didn't even have a name twenty years ago, I've often wondered if the late diagnosis of coeliac might have been responsible for my cancer.

I hope your daughter continues to do well

Yes I had low ferritin for years that's why they kept checking for coeliac antibodies, and the tummy problems of course, one of my son's is also sero negative coeliac

We have female hair loss in our family, my grandmother, aunts and mother all suffer. My aunts wear wigs but my mum uses the mane hair spray to make her hair look thicker and it works although she always wears it up now so sprays the front and top of her head. She has autoimmune issues that also run in the family. Hair loss started in her 30’s and she does find it upsetting but honestly I do not think people notice.

Thanks @MissSmiley I hadn't heard of seronegativity before
www.celiac.com/articles.html/seronegative-celiac-disease-r4545/

It makes complete sense that the gold standard for diagnosis is the endoscopy. My dd had an endoscopy at the local Children's Hospital and finally got her diagnosis at the age of 13, after suffering for years with Celiac symptoms (not that I knew what Celiac was at the time). We were in Germany and despite being seen by GI specialists there she never received a diagnosis because her blood tests weren't showing concerns; But after finally learning about Celiac I felt in my gut (har, har) that's what she had.

When we moved back to the USA I took her to the dr and she was referred to the hospital asap.

She had a rare blood disease/cancer as a baby and had chemo. As well as Celiac running in my husband's family (something that was also discovered after her diagnosis) serious illness can trigger autoimmune conditions such as Celiac.

celiac.org/about-celiac-disease/screening-and-diagnosis/

To be honest I am pretty worried about her health. She is 19 now and at uni here in the USA.

@BernadetteRostankowskiWolowitz
I should start with the disclaimer that I am 1) a man and 2) definitely not any kind of medical professional. However, I did start losing my hair from a very young age, was very conscious about it and spent a lot of time trying to convince myself it wasn't male pattern baldness, using a lot of snake oil treatments in the process. I even made myself sick taking too many iron supplements once. So I've read a lot and know a lot of the scams that are out there. Luckily as a man, eventually it stops being an issue but I appreciate society makes it a lot harder for women, so I will try to be gentler with my advice than guys can be to other guys.

I read through this thread and recognised a lot of the conditions that I tried to self diagnose myself with. @Ravenclawdropout mentioned celiac disease but hair loss here tends to present itself in small completely bald patches called alopecia areata rather than thinning. @Whatever00 sounds like she had alopecia areata too. Just very recently there has been a breakthrough in treating this kind of hair loss but like most breakthroughs the medical trials take a long time (normally a decade).

@WhiteWhiteWhite White mentions hypothyroidism. Normally hair loss caused by thyroid problems will mean the hair thins on the whole scalp whereas female pattern baldness only happens on top which is how you and the doctor would be able to tell the difference. I convinced myself I had thyroid problems and used a snake oil topical called Thymuskin for a while, which didn't have any effect whatsoever. @bloomflower mentions fatty liver. It can cause hair thinning but again it would be like thyroid problems and not just be limited to the top of your scalp.

@Whitehorsegirl suggests taking vitamin supplements. That's fine if you have heavy blood loss and have hair loss caused by iron (normally it shows not just in the hair but also the finger nails) but if you are going to spend money fighting hair loss then you probably want something more effective than supplements. Please be careful about taking iron supplements and get medical advice first. Normally you shouldn't do this without a prescription (my doctor gave me a right bollocking).

Unfortunately it sounds to me like your doctor is probably right that it is female pattern baldness and this is where I'm with @Fraaahnces. I don't think the NHS is doing anywhere near enough for women with hair loss. Minoxidil is the topical to take and it will probably help you more than it would help the average man with hair loss but as @Fraaahnces says you should definitely use the stronger topical used by the men which will make things a bit cheaper. Really it ought to be available on prescription for women although no doubt you'd get some sad little men's rights group whinging about it.

I also get that it's frustrating that we don't get more research into hair loss. Female and Male Pattern Baldness are both thought to be caused for the same reasons but still in 2022 it's still not clear what those reasons are. There are some firms in the USA but they're private sector and tend to get bogged down with lack of investment, intellectual property law suits and FDA red tape.

I know from my late teens that it's an unpleasant read when someone comes to a conclusion you'd rather not hear so first of all I want to say sorry for that but I just remember what it was like for me and didn't want you chasing treatments that won't help you. There are three things I would like to conclude on though which will hopefully make you feel a greater sense of optimism:

1. Minoxidil will probably have a positive effect;

2. People with female pattern baldness are excellent candidates for hair transplants because they're very unlikely to go completely bald anywhere on their heads and have plentiful "donor hair" on the back and sides.

3. Treatments are advancing.

Great post @BetterFuture1985 thank you.

I know of two people this has happened to. One shaves whats left and wears a very awesome wig (you wouldnt know) the other went to a specialist hairdresser and has some sort of weave type thing in. Both look great.

Op, Google Fenugreek seed water and rosemary oil for hair regrowth. Supposed to work like minoxydil

Interesting re iron levels / buying own supplements. I've contacted the GPS for a telephone appointment which will be next week so I can discuss possible iron deficiency and any tablets etc.

By all means ask about iron deficiency but don't buy it over the counter unless you are prescribed. Excess iron can lead to haemochromatosis which can cause diabetes, heart problems and liver disease. When I decided I had an iron deficiency and started taking supplements I started suffering from fatty liver and in turn that led to gallstones. I've got four nice scars on my chest now.

Duly warned