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Author Topic: Hair Loss/Androgenetic Alopecia (genetic hair thinning). Anyone else have this?  (Read 7507 times)

Annie0710

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Hi Lesley

Do your extensions start at the top of scalp ? I'd need that and I looked into mesh extensions but my god they're pricey plus travelling to get them tightened every 6 weeks for £140 a time

My left shoulder blade gave me such a painful time last year I paid privately for a chiropractor , he diagnosed CFS with me and said I should tell my GP.  I've never really understood CFS and fibromyalgia as I was always under the impression they are symptoms of something else or when they don't know what to fdiagnose.  I don't mean to offend, but I've never got my head around those diagnosed and ME.  Mind you so many of the symptoms overlap with menopause don't they x
Logged
Age 54
Hysterectomy 1999 age 32 and given 2mg oestrogen due to ovarian failure
Onset of new symptoms  2012 age 45
Diagnosed post meno 2015 age 48
2mg elleste solo til 2015
Started Estradot 75mcg 2015
Sept 2016 scan showed dissolved ovaries
May 2017 oestrogel & Tostran

Lesley Joy

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Hi Annie...

CFS/ME is a neuro-immune condition, it's also an autoimmune condition as is Fibro, IBS, endometriosis, interstitual cystitis, Lupus, MS etc the list goes on. Autoimmune is like an umbrella with lots of conditions underneath it,  most people have 2 or more as autoimmune conditions like to hang together in groups! It causes an over activity of the immune system and this causes an array of unpleasant symptoms which come and go in flares. Stress really ramps it up and depression and anxiety are common.

The extensions start about halfway down my head, I back-comb my hair which helps give an elusion of fullness! Can you get a partial govt grant towards your condition? Mine pays for the extension re-tightening then I pay for my own hair trim.

Lesley x
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Annie0710

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I'll look that up Lesley
I developed double vision 2 years ago, eye clinic have discharged me as they can't give a reason nor can they control it.  I have to wear glasses with prisms in for driving and for when it's really troublesome (very common when I'm tired)

GP referred me to a neurologist who diagnosed myasthenia gravis but then he said I didn't have it and also discharged me x

Logged
Age 54
Hysterectomy 1999 age 32 and given 2mg oestrogen due to ovarian failure
Onset of new symptoms  2012 age 45
Diagnosed post meno 2015 age 48
2mg elleste solo til 2015
Started Estradot 75mcg 2015
Sept 2016 scan showed dissolved ovaries
May 2017 oestrogel & Tostran

4candles

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Hi Lesley and thanks for posting .. I have CFS/ME too, plus Fibromyalgia and the symptoms of everything seemed to start in the perimenopause, although I've had Depression/Dysthymia and anxiety for many years prior to all this. Such stresses on the body can't really do hair any favours, but I wonder if the Androgenetic Alopecia follows its own agenda, regardless of our health, since it's hereditary :(

I take various supplements (probably more a placebo effect than anything, granted) and eat brazil nuts ::) when I remember, but I have a feeling my hair would be the same if I feasted on junk food (actually, what's left is baby-fine, soft and shiny-ish, but not that's not much consolation).

Your extensions sound really good :) and an important step forward for you, so that's good to hear and it helps others such as myself to hear that. X
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CLKD

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I've had IBS for years++ and it isn't auto-immune ;-)

Would it be possible to go to a hairdresser than specialises in 'ethnic' hair?  I think some of the ladies from the Caribbean have extensions, certainly some wear wigs of straight hair ........ it may be closer to home?  We have several ethnic markets and the hair styles fascinate me, particularly the really young girls with tight braids - one the other day had small brooches attached.
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Changes can be scarey, even when we want them!

4candles

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I've had IBS for years++ and it isn't auto-immune ;-)

Would it be possible to go to a hairdresser than specialises in 'ethnic' hair?  I think some of the ladies from the Caribbean have extensions, certainly some wear wigs of straight hair ........ it may be closer to home?  We have several ethnic markets and the hair styles fascinate me, particularly the really young girls with tight braids - one the other day had small brooches attached.

Thanks for your further thoughts .. I certainly have A LOT of brooches which might be an avenue to explore. Distraction strategies? ::)

Do any of you ever notice that where there's a bald area you still have one or two stray hairs that persist in growing - I always wonder what's different about the follicle under those ones that's helped them survive!

My sparser areas are hard for me to inspect thoroughly (as if I don't inspect it all enough already ::)) but, I think, in the weirdness that is AGA, some follicles are genetically programmed to give up, while others battle on. Goodness knows why. So very frustrating. No rhyme or reason :o
X
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hoping4best

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4candles hi from the other thread!  :)

I have been tested for everything (iron, hormones, thyroid, everything...), seen a lot of specialists. I, too, have genetic hair loss, but one of my specialists says it's "Female Pattern Hair Loss" b/c they do not know that it's always androgen-related for everyone. My androgen levels are very low. I know it's a ratio thing, but increasing estrogen has not helped me. Because my androgens are so low, I'm not a candidate for androgen-lowering drugs.

I had tons of hair until I started a higher dose of HRT after my POF/surgical menopause. Then I started having TE episodes, and after several TEs, the FPHL revealed itself as thinning around my top part in particular.

I am in month 6 of minoxidil (I was so hesitant to start it, but it's really been no big deal to use). My diffuse loss, which manifests as near-constant high shedding, continues, so I am having trouble being able to tell if the minox is working. I've lost about 50% of my original volume, I think (not from minox use, but since the shedding began initially). I'm currently still able to hide it by re-parting my hair and using a scalp fill-in powder. I am going back to a specialist to check on my progress next week (she took pictures of my scalp so we can compare), and I will try to report back.

A couple other observations about minoxidil so far:
Since I started minoxidil, although my shedding continues, my hair seems to be in really good condition. Better than it's ever been. I am not sure if it's because I'm now using coconut oil as a leave-in conditioner, or if the minox is improving the texture of my hair. Or what.

Also, I use liquid, and it takes seconds to apply it. Really, so much less effort than even flossing my teeth. So if it's working, I will continue. So far, I've had no noticeable side-effects.

Hang in there! I know how upsetting hair loss is! It's really not fun. I highly recommend giving minoxidil a try, though. It is a 6-12 month commitment to see if it will really help you, though. I know that's hard. But if it works and you don't have side-effects, then it might be worth 30-60 seconds per day to apply it. I'm also not into hairpieces or wigs, and am hoping I won't need to go down that route. We'll see, though.

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43, POF age 38
have uterus & 1 ovary, no ovarian function at all

Lynne888

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I have hair loss, in fact, it was my own hair loss from 14 years ago that lead me to have my own wig and hairpiece business!  Last year I started to get scalp psoriasis  :-\ I was sent to see a specialist - she was brilliant - and she told me that if anyone went to her with hair loss, whatever the reason, she immediately put them onto Regaine.  I went onto it, it didn't work for 3 months (I know this puts some people off, you really DO have to give it time to work) but after that my hair stopped falling out. It didn't thicken up much but the hairbrush was no longer full of hair every morning. There's a cheaper version on the market that has identical ingredients and I used that after the first 3 months.  I stopped using it several months ago, the hairloss stayed away for a while but it's now back. The problem is that you have to continue to use it.   
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hoping4best

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I went back to the scalp pathologist last week for a check up. The pictures of my parts that she's keeping for me are, in fact, improving on minoxidil. This is encouraging. I go back in 8 months for another check.

My shedding is a little better, but it's still pretty high. Minoxidil hasn't reduced my shedding that much. But apparently it is helping.

Yes, you do have to use it forever if it works. I've made peace with that, I think. As long as it continues helping and I continue not to have side effects, I'm okay with that. The generic liquid is very inexpensive.
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43, POF age 38
have uterus & 1 ovary, no ovarian function at all

Night_Owl

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It's truly awful trying to cope with hair loss as well as menopause, my sympathies to all of those struggling to get by.

In the last 9 or so years I've lost about 60% of my hair - all over but predominantly on the top/scalp - due to Androgenic Alopecia (Female Pattern Hair Loss) plus Telogen Effluvium that flares every so often, particularly on the left side of my head. 

The nightmare started when my periods stopped.  It is definitely genetic - my mother had hair loss, hers started after a hysterectomy - at the time she didn't know it was AA, there was no diagnosis - she just knew all her female relatives had poor quality hair.

HRT hasn't helped, testosterone is exceptionally low - it's such a mystery as how so little testosterone can convert to DHT in the scalp.  I can't face using Minoxidil every day, I just know I wouldn't be able to maintain it for the rest of my life.

Currently experiencing yet another particularly horrid flare of TE (hormone imbalance and auto immune related) with the horrid scalp boosebumps creeping sensation, more so on the left side, and shedding loads of precious hair. 

Upped to a higher strength B-complex vitamin, taking lots of fish oil and eating unprocessed food, using Plantur 39 shampoo and tonic - all to no avail.  I also think that if I ate a diet of complete cr@p, it wouldn't make any difference to the hair loss or menopause symptoms - it's all in the genes.  But I guess you still feel the need to somehow fight it as it's such a confidence destroying experience.

Who would have thought that washing one's hair - something that should be pleasurable can bring on a panic/anxiety attack as hundreds of hairs plug the drain - the hideous sick feeling of trying to cope with losing another aspect of one's femininity.

Thinking about trying Philip Kingsley Tricho 7 Daily Scalp Drops (Tricho 7 Daily Scalp Drops help encourage the optimum environment for healthy hair growth, stimulate the scalp to help extend the anagen (growing phase) of the hair growth cycle, and inhibit 5a reductase activity of converting testosterone to the more damaging DHT, the hormone commonly responsible for thinning hair) - but they are sooo expensive - and do they work.

Also thinking about trying a course of acupuncture, to cope with the stress of it all, if nothing else. 

The menopause and resulting health issues can be so expensive!

I have a small, highlighted Balmain clip in hair extension that I sometimes use - clip it in on top, backwards and sweep my front hair over it to blend and clip it - but I really don't like the small clips as they pull on the already fragile hair - plus tere is more grey now the blend is not so good.  Also I sometimes use brown scalp powder and Nanogen fibres - they're quite effective but can leave the scalp feeling very dry.

Does anybody use a small top hairpiece with netting (not clips) to pull through your own hair - it could be a faff to get it to look passable but I'd give it a try if I could find one.  Maybe I just need to go to a bespoke wig maker.

Sorry that this is all so depressing, just telling it how it is - find it so hard to put any positive spin on hair loss.

I got the idea of the clip-in 'backwards' from this video which I found so helpful.  I love June Penny's upbeat attitude - and all of her videos (at 6.33 she adds the clip-in):

https://www.youtube.com/watch?v=H6c8MCwcveU


Logged
Oct 2018   **came off all HRT**
Age 58, early-ish meno @ 44
Highly progesterone intolerant and migraineur
Past regime: Panay, Long Cycle
Estraderm 25 patch twice weekly
Utrogestan 100mg x 10 nights, v-route, 6 weekly
Vagifem 3 times weekly
Ovestin cream sparingly
Yearly endo scan

Annie0710

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Hello ladies

As you probably know I've been beside myself with upset, worry and despair about my shedding (Nightowl your post prompted me to post here again, I really feel for you)

As soon as i reached post meno my hair started shedding, and rapidly.  I'm quite a vain person, always (prior to meno) been a size 8 , blonde with clip in extensions, make up (not like a dogs dinner but mainly my eyes) and this hair shedding was the ultimate for me, meno had stripped me of everything (and I'm not exaggerating) I've tried minoxidil , even finasteride but couldn't keep affording the women's doses .  Shampoos, lotions and potions etc

I was using nanogen fibres like they were going out of fashion and should've just had a direct debit with the company the amount I was ordering. 

Xmas I decided to try Tibolone , renowned for weight gain and possible hair loss so I decided to buy a clip in hairpiece ready and also it'd cover up my loss.  3 months of Tibolone later and I've reported my hair is more manageable but I've come to the conclusion it's not just more manageable , it's thicker and it's filling in , the ends are still like rats tails where I have a pony tail daily but the scalp is definitely better and after drying it today I realised if I didn't wear my clip in, I actually wouldn't need the fibres either ! A derm told me I have seborhheic dermititus and female pattern hair loss and wrote me off saying it's just one of those things.  Even her knowing I was post meno she didn't mention hormones.  I'm a long way from having my old type of hair back but my god there's improvement

Now, this could be down to a few things , it could be:

I was having too much oestrogen
I needed progesterone
Not enough testosterone/imbalance
Wearing the clip in, I didn't worry about my bio hair, so less stress
A bout of TE?

I don't like my clip in, you put it an inch past your hairline and blend in, I don't like it down either hence the ponytail but I've ordered a different one, it sits right at the front and you can part it wherever you like, put it up, leave it down, have a fringe, wear it as it comes , the cap is much bigger so hides a lot more and the clips are lower down not on the top of the head.  I've watched it on YouTube so much rewinding sections to inspect it and listen to every word the reviewers are saying and it should last about 8 months

Now this improvement for me may be temporary, who knows but now I know there's options and affordable ones at that, I'm kind of accepting it all better xx
Logged
Age 54
Hysterectomy 1999 age 32 and given 2mg oestrogen due to ovarian failure
Onset of new symptoms  2012 age 45
Diagnosed post meno 2015 age 48
2mg elleste solo til 2015
Started Estradot 75mcg 2015
Sept 2016 scan showed dissolved ovaries
May 2017 oestrogel & Tostran

abbyH

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Really glad to read there is such an improvement Annie, at least in yourself.. but sounds like you've turned a corner with your hair. I am happy to report I have too!

not sure why, or how. I've been dabbling with HRT as you know, and on very low dose estrogen - which I've now upped to 50...plus 1mg of tablet... I feel fine, actually so much better!

my hair has filled in, I'm no longer shedding, it's still a lot thinner than it was but in much better condition and more my old type of hair not brittle and looking like death!

Im having a very small amount of extensions put in next week just to fill out  the back.. the front looks fine as I've had a fringe cut.. I' feeling much more confident and even went on a date last night!!!!

I've been taking high strength Primrose oil for several months, plus Biotin and at one point (after advice on the Surmeno board) I rubbed a bit of Uterogestan in it over a couple of weeks.. That's when I noticed the shedding stopping actually!

so, hope for those who might have gone through the same thing. I definitely feel its hormone-related since it got so much worse after my ovary removal and now, maybe things have settled down and my body is used to not having hormones? WHo knows

but I do feel better and am glad you do too Annie.. and that the Tibolone is working for you...keep updating!

Abby xx
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Total Hysterectomy and BSO June 2016
Estrogel and
Tostran 1 tiny blob x daily

Annie0710

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Aw thanks Abby and it's lovely to read a positive post from you .  I do think there's a small degree that even knowing someone is willing to try and help gives you a better outlook, it really did/does for me, then adding in what hormones we need finalises it. I'm a way away from the old me and I really want this social worry to bugger off but there's a small improvement x
Logged
Age 54
Hysterectomy 1999 age 32 and given 2mg oestrogen due to ovarian failure
Onset of new symptoms  2012 age 45
Diagnosed post meno 2015 age 48
2mg elleste solo til 2015
Started Estradot 75mcg 2015
Sept 2016 scan showed dissolved ovaries
May 2017 oestrogel & Tostran
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