Feeling so frustrated. I still have no answers as to why my hair is falling out! Can anyone help or is anyone having a similar experience?

Hi everyone,

I have been experiencing hair loss for nearly 2 years now and am so frustrated after exploring many many avenues to try and work out why this is happening!

I first started experiencing hair loss when I noticed more hair falling out in the shower in my hands than I would usually have. I started noticing hair in my bed on my clothes everywhere through the washing when I went to hang it out. It just started to get thinner and thinner and has increased as the time has passed. At first it was most noticeable to me near my part at the top of my head and I started to worry about it and study it more and more in the mirror. I ended up counting hairs, until it became unbearable.

I don't have round complete bald patches but noticeably thinning hair all over which has gradually gotten worse and worse. I went to my doctor firstly who ran tests such as Iron, thyroid etc which all came back clear. She sent me to a specialist (dermatologist) who couldn't diagnose me as such he gave me possibilities such as Female pattern balding or Telogen Effluvium. He gave me a letter to send to the Ministry of Health here in NZ which made me eligible for a wig grant and I was sent on my way with still no answers. I have even gone to a Naturopath to try and get answers, but I still have none. I have been back to the doctor on numberous occasions to get blood work done worried that there is some underlying cause for this hair loss!!

I have scoured the net for hours trying to get some answers.

My hair loss is definitely all over my head. Thinnning all over my scalp. I have lost over half of the amount of hair I used to have and it is getting see through on top!

I have brought wigs although it is definitely a mission to find one that is looks right and I feel comfortable in. Since I am in New Zealand where I am we don't have wig stores, or beauty supply stores so I buy online (which is really hit and miss considering I can't try them on! ) I am waiting for one I have ordered similar to my natural hair colour.

The other problem I am having is whether to shave it off or not!

I find it a daily struggle to get my bio hair to a standard in the morning where I feel comfortable to walk out the door. Since it is so thin it is hard to style and have daily rituals such as, sitting in front of the heater to air dry it! (believe it or not! ) as my hair is also curly since it is thin I can't blowdry it or it just turns to frizzy whisps on my head!. It messes very easily in even a light breeze and goes greasy by the end of the day so I have to wash it every morning!

I know I am lucky compared to many on this site as I do have some hair, however it is so frustrating not knowing why this is happening and not being able to put a label on what is happening to me. I know this sounds horrible but in a way I wish it would either all fall out or all grow back just so aybe it would make it easier for me to make a decision about whether to shave it all off! I am so torn and so frustrated!

I am ranting now but I am at my wits end!

Is there anyone out there in the same boat as me or anyone who could give me some advice??

Thanks for listening anybody who has

There are so many people on here that are so strong and wish I could find my strength too :)

Love Jen xox :)

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Replies to This Discussion

Permalink Reply by Jennah on July 18, 2013 at 2:27am

:) what type of wig do you have? just curious :)

I am just waiting on the Adriana by Jon Renau :)

Permalink Reply by Kirsten on July 19, 2013 at 1:41am
Sorry for the late reply.

Your GP would need to check your FSH, LH, testosterone, progesterone, estrogen, prolactin etc... and see if they are in the normal range for your age or not - some of mine are way too low.

I don't want to try rogaine because a side effect for women is added face and body hair growth and I'm already going through hell with that as well, hair in all the WRONG places. I also haven't heard of anyone one with androgen excess who it has worked positively for.

I talked to my GP about finasteride today but he's uneasy about it but said to talk to my endocrinologist when I see her at the beginnig of Sept.

I got my wig on the government subsidy and I'm with the people that the NZ Cancer Society work with and recommend to everyone, they know their stuff but I'm still not that happy with the wig. It's human hair but it's been so processed it just doesn't feel that great and we had an terrible time with finding a style that didn't look awful on me - most wigs make me look like a man in drag (in fact they rock them compared to me).
I also have problems with the fit of the wigs - they make your ears stick out more and wearing glasses is quite
a hassle.

All the comments about shaving my head have been from family and friends - the mutilation comment was made by my GP.

Anyway I hope you enjoy your Friday night and take care :)
Permalink Reply by Jennah on July 28, 2013 at 5:48am

Thanks Kirsten I Is FSH ferritin/iron if so have had that tested. Not sure about the others. I think I will make a trip and get these tested. I am sure my GP will think I am nuts! I just want to get everything I can tested that may be related just to be sure that's all :)

Permalink Reply by Kirsten on July 28, 2013 at 8:12am
FSH is your follicle stimulating hormone - most GP's start including it in your regular blood tests from your late 30's onwards to see where you are pre menopause, once it comes back past 12 you're heading into menopause. The rest are all hormone tests as well. My estrogen and LH were almost non existant, so I need the HRT to fix that, my FSH etc.. were all normal for my age, the progesterone may have been slightly low but that fitted with my hormone inbalance. I'd also ask your GP to check your lipid profile (cholesteral etc..) and your blood glucose as they tie in very closely to hormonal problems.
My iron has always been low, I've been anemic more than once, they did the whole gastroscopy/colonoscopy and small bowel cam but that was all fine and it was concluded I was one of a small group of people that can't metabolise iron very well so I have to take the perscribed supplement for the rest of my life. This has been going on since I was very young so I know it has nothing to do with my alopecia.
Permalink Reply by Jennah on July 28, 2013 at 5:50am

Also I can't believe your GP said that to you! called shaving your hair mutilation! I think that is just wrong of him/her and it slightly angers me to be honest!

I agree the wigs thing is hard. It's hard to find the right fit and style especially as we can't really try them on here huh :)

Permalink Reply by Kirsten on July 28, 2013 at 8:45am
My GP is generally a very good guy I think he's just very concerned about my mental state, what with my eyesight etc.. and he feels I might not be thinking things through rationally, I guess he needs to make sure I'm not 'acting out' - I think this has all been a shock to him as well, I've been with him for about 18 years so he knows me quite well and in his defence I have 'acted out' before. We'll work through it as we always do and at the end of the day he may not agree with my decisions but he'll respect them.

I tried the wigs on here and that was my wake up call to just how bad most look on me. One of my biggest problems is straight hair looks awful on me, I need volume and at least a bit of curl which wigs don't come with, so they need to be permed and that is about the millionth time they get processed so the hair quailty just gets even worse and the curl is just a limp wave. If I could pull off straight hair it would make things easier. What I'd give to have WETA Workshop's wig team make me a hobbit or elven wig.
Permalink Reply by Jennah on July 29, 2013 at 4:40am

lol :) Have you looked online? they have allot of wigs around. Vogue wigs is a good site. I have ordered synthetics from them. Good service and products. Cheap ones to more expensive. I have only order sythetics off them. Have received Jon Renaus adriana from them recently it's nice and light and its curly (not super curly) but similar to my natural hair (the most similar I have got. Its a hand tied monofilament :) I must admit I haven't had the balls to wear it yet! but I do want to
:) I'm a wuss! I don't really know what I am scared of ?

Permalink Reply by Kirsten on July 29, 2013 at 6:33am
I just don't have the money to buy something online that I might never wear.

As for being scared, I know that feeling with the wigs. Every time I wear mine I feel certain that people know and I'm just not at ease in it, all it takes is the wind or bending my neck back to have it messed up. I hate the way it doesn't move naturally and the way it sits unaturally off the neck. I spend more time fussing over it than I ever did my own hair and I blame the wig stylist despite her protests and supposedly being a stylist extrodinaire it's very badly cut - I was just so worried about my hair loss that I let her convince me that it was all in my head.
She was the one who permed that piece you can't wear - she doesn't do a very good perm at all.
Permalink Reply by Lilac on July 26, 2013 at 3:06pm
Hi Jennah, have you tested for gluten intolerance? Although androgenetic alopecia is pretty much a curse in my family, one of my siblings completely stopped eating foods containing gluten and most of her hair grew back!! I was shocked because all my siblings, including her, and I have been diagnosed with AA.
Permalink Reply by Jennah on July 28, 2013 at 5:45am

wow ! that is an interesting one, I haven't been tested for gluten intolerance, would be worth a try I guess. Can the GP just test for that? :)

Permalink Reply by Jennah on July 29, 2013 at 4:35am

Do you think I would have been really sick eating gluten if I was Gluten intolerant though?

Permalink Reply by Lisa Santer on July 28, 2013 at 12:49am

Hi Jen,

I'm sorry this is so frustrating. I've been in a similar boat, wishing my hair would either all fall out or all grow back. I shave off whatever little patches of hair grow back, most days, and I don't care for it. While I can't recommend for you, I can say that every time I made the big step of cutting off the lonely hairs I felt liberated. No more shedding messes or fretting about what the breeze has done to my hair. Whatever you choose, I'm sure you'll get support here.

Best wishes,
Lisa

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