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Author Topic: Hair Loss/Androgenetic Alopecia (genetic hair thinning). Anyone else have this?  (Read 7497 times)

4candles

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Hi .. I mentioned in my thread in New Members that I am struggling to cope with Androgenetic Alopecia. For those who aren't familiar with the term/condition, it's a very specific diagnosis (from a Dermatologist) which means that hair thins progressively due to a genetic predisposition and the follicles shrink and the hair gets finer and then some of them don't produce hair any more :'(
When I was diagnosed over a year ago (age 50, but the thinning started to show in my mid-40s) I was feeling pretty desperate about it, but not desperate enough to start using the 5% 'Regaine'/Minoxidil foam the Dermatologist suggested. This is usually prescribed for men. I felt I could 'get by' with my hair as it was and I hated the idea of a) the faff of applying this product every day for the rest of my life (if you do get any improvement, it's lost if you stop using the product), b) my scalp is already a bit sensitive so the Derm prescribed a steriody foam to use as well and c) side effects such as scalp sensitivity/headaches. Somehow I was in denial about it being progressive ..

Fast forward to the meno-meltdown and a significant (and ongoing) deterioration in my mental health approx 4 months ago, and my hair has now thinned much more (not just in my perception of it due to my low mood). It is causing me significant distress through most of my waking hours and feeds into the anxiety problems I have to the extent that it's now become a dominating obssession. It's hideous!

I have explained the issue to a psychiatrist, and he has suggested 'Talking Therapies' (that will take ages to access, no doubt) and also that I see the Derm again (I am considering paying to go privately because the referral via NHS will take months and my mental health is so iffy).

I think I am clutching at straws in seeing the Derm again; she suggested a product I didn't use, but I suppose I would like to talk more to her about it. A lot of reviews I've read about it suggest it can be ineffective.

I went grey in my 30s, which I dealt with Ok. This is so so much worse. No matter how much I tell myself it's vanity/people are worse off .. I cannot stop myself thinking the very darkest thoughts about my situation. I know the rumination is all part of the mental health thing, but even this awareness doesn't get me out of this vicious circle.

I am nearly 2 weeks into Evorel Conti and I gather the Progesterone in that is androgenic so may not do my hair any favours (the downturn in my hair started before the HRT though). So this is worrying me. I will ask the Dr/Derm re: that as well, but I'd also like to hear from any forum members and their experiences of Androgenetic Alopecia ('AGA'); how you cope, does it keep progressing after the Meno (that's probably a daft question if it's progressive, and every individual is different, but I cling onto tiny hopes that it might ease off)?

Have any of you tried Minoxidil/Regaine 5%?
Does any particular HRT seem to have improved your hair/AGA?

My hair is still at the stage when I can fiddle with it and make it look 'passable', but it is so very different, like having someone else's hair. The lack of volume and density and facing looking in the mirror in the morning is really devastating. daft as it sounds, I would far rather OTHER people notice it thinning (which they will soon) and me be blithely ok with it. I would also opt for shaving the damn stuff off but I haven't got the right face (or head!) for that. I've tentatively starting to look at wig retailers, but that is something that I would find really difficult indeed. It's like being between the devil and the deep blue sea ::)

I also meant to say, that lots of other things can cause hair thinning and that some of this can be reversible, for some people. I don't want to worry anyone about having AGA if they haven't got it! I did all the usual things like got my thyroid checked (all ok) and then I found out my Ferritin levels were low and took iron supplements and now have Ferritin levels well above the range needed for hair re-growth (I was in denial about the Derm's diagnosis and went on a quest to fix myself. My way of coping I suppose, but I so hoped my low Ferritin had cause the thinning, which is another reason I didn't start the Minoxidil). My Vit D was low as well, and so I took supplements, and, again, no hair improvement.

I've also used Nizoral shampoo and nowadays take Evening Primrose Oil and a Multi-Vit ) for hair ::)

I take Cipralex/Escitalopram 10 mg a day and have no choice but to take A/Ds but the Derm also said these can affect hair. GREAT!!!! NOT!!! ...

Mostly, I know I need to accept this situation, but am finding it very hard to battle with myself (on so many levels) day after day.

Please do share your thoughts and experiences, and ask me any questions you have. Really sorry this is a long post - I try to explain fully so that folks don't suggest things I might have already tried :)

Thank you. X
« Last Edit: January 19, 2017, 04:46:07 PM by 4candles »
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CLKD

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 :bighug: ....... it is amazing how important our hair becomes!

Do have a look at the pro-hairdressers' web-sites, I know a few support cancer sufferers by making good quality wigs. 

I haven't had any problems with my hair whilst taking ADs - since 1998.
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Changes can be scarey, even when we want them!

CLKD

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Here we R -

mynewhair is the pioneering new charity founded by and inspired by Trevor Sorbie MBE.

We provide public advice and support a national network of independent salons and professionals who provide a wig styling service for people suffering from cancer and medical hair loss ....... etc..
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Changes can be scarey, even when we want them!

4candles

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Thank you again for your input CLKD. I think hair loss is a rare side effect of some A/Ds .
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Annie0710

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I've inboxed you 4candles xx
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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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Annie0710 .. Thanks so very much for your message which I can read in my Inbox but can't reply to?! So frustrating! There is nothing to click on to 'reply' and nothing in my profile settings to shed any light on the situation :( Perhaps I haven't posted enough messages yet to be allowed to send a PM? (UPDATE .. I haven't posted enough apparently, so hope to reply in next few days.. )

and Stellajane thank you for your insightful response too. You have been dealing with the hair issues for a long time now and have gained a lot of wisdom along the way. I welcomed your perspective on stuff 'wearing out', like glasses etc!
Yes, I have looked at the Alopecia UK site and forum and checked out where some of the support groups are. All rather a long way from me, but I'm not ruling out journeying forth in the future.
I will have to look into alternatives to the Conti HRT, in order to avoid the norethisterone. What a palava ::) Do you mind my asking which HRT you are on (I realize our situations might be different, but I'm just thinking of the hair angle)?
I nearly got to the not-being-bothered-about-being-bothered stage 6 months back, but then there was a hair down turn and I feel back to square minus 25  >:(

Thanks again X
« Last Edit: January 19, 2017, 07:12:20 PM by 4candles »
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Annie0710

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Annie0710 .. Thanks so very much for your message which I can read in my Inbox but can't reply to?! So frustrating! There is nothing to click on to 'reply' and nothing in my profile settings to shed any light on the situation :( Perhaps I haven't posted enough messages yet to be allowed to send a PM? (UPDATE .. I haven't posted enough apparently, so hope to reply in next few days.. )

and Stellajane thank you for your insightful response too. You have been dealing with the hair issues for a long time now and have gained a lot of wisdom along the way. I welcomed your perspective on stuff 'wearing out', like glasses etc!
Yes, I have looked at the Alopecia UK site and forum and checked out where some of the support groups are. All rather a long way from me, but I'm not ruling out journeying forth in the future.
I will have to look into alternatives to the Conti HRT, in order to avoid the norethisterone. What a palava ::) Do you mind my asking which HRT you are on (I realize our situations might be different, but I'm just thinking of the hair angle)?
I nearly got to the not-being-bothered-about-being-bothered stage 6 months back, but then there was a hair down turn and I feel back to square minus 25  >:(

Thanks again X

Glad you got it.  I think it might be 10 posts then you can inbox 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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The lovely ladies have responded before me but basically identify so much with what you wrote!!!

Have been losing hair since 2011.. Had a glorious mane up to 50 - now 52 and have wispy thin, front receeding and just awful...
have also had a total hysterectomy/ovary removal (June 2016) and it has got worse, but can't take oestrogen only therapy as makes me feel shit and am now waiting (tomorrow!) for appointment to get trial of tibolone

I bought my first wig, the other day and while it's nice having the hair - it's not the same as your own and I feel very down about it..

the worst part is actually people saying 'it doesn't look bad' or 'i've always had thin hair' as if one should just put up with...

really sympathise.. I'm also doing a 3 x weekly rub of 1/3 of a uterogestan tab on head - with some biotin oil.. Taking biotin tabs daily, plus multi vit...

do not take norithisterone.. but apparently Mercilon ( BC tab) has worked for a friend of my sisters who had really  bad hair issues..

XXX 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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Hi Abby

Are you breaking tablet up then to rub on hair ? 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

abbyH

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Hi annie, no its a capsule with liquid in.. I use about 1/3 in a carrier oil and rub on head.. My hair loss has slowed.. it's not got anyt thicker but am also noticing spikey hair growing on scalp

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

Annie0710

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That's great news Abby

Could you send me the link please ?
Did I tell you that castor oil (compressed ) can potentially help rubbed on scalp ? Wonder if that could be used as a carrier oil ? 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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Thanks for sharing your experiences Abby but I'm kind of sorry we are in the position of having these experiences, of course :( It sounds like your hair loss was fairly rapid and that must have been very traumatic for you, especially if you'd had a lot of hair prior to the issues. Somewhere along the line, it must boil down to 'taking control', whether that's using hair-pieces or wigs, or those fibre-y sprinkly things. From what I gather, it's very natural to take a while to get used to a wig, but you are doing what is right for you now, even if it's just experimenting. Of course you feel very down, I really do understand that feeling :'( but did I detect a little glimmer when you wrote ' ..it's nice having the hair ..' ?
I so agree about peoples' 'helpful' comments.
I had never heard of the Biotin oil and tab scalp rub treatment. Do post again on how you get on with it .. and the Tibilone, of course. We must share any breaking news :)

And thanks Annie and Abby on other posts that have popped up as I was composing this one.
X

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CLKD

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If you go on holiday in the UK, maybe look up to see if there are support groups close to where you choose to go? or choose somewhere that has a group you could join in with and book accommodation accordingly?
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Changes can be scarey, even when we want them!

Annie0710

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Isn't it strange how we all differ ?
Probably because our causes are different

Mine started whilst hitting post meno and on oestrogen only 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 there gosh I have felt your anxiety when my hair thinned...

I have diffuse alopecia (overall hair thinning) which really began 22 years ago when I was 38. My hair just kept coming out, it was a nightmare! I was under tremendous stress at the time, in a verbally abusive marriage and with 2 young children, my periods were all over the place plus I was working.

The year after I was diagnosed with CFS, one of its symptoms can be hair loss. I had a very bad health flare, where I was confined to the settee for 6 weeks over the Xmas period. My legs could hardly get up the stairs and had zero energy!

In the March, I said I wanted a divorce and 6 weeks later my husband moved out.... things started to improve for me. I saw a specialist who said I was eligible for a government grant for a hair piece then I contacted a place that sold wigs. The lady there suggested that I try hair extensions, I initially had 2 lines and they were wonderful. My hair was fuller and no one knew I had them, my self esteem and confidence grew again. I've recently cut down to one line of extension. I have to get them re-tightened (and my actual hair trimmed), every 3 months but it's been so well worth it.

My own hair continues to grow in length but has never re-gained what it was before the thinning started. I know this story is different from yours but there are alternatives out there besides wigs. There are also some fab hair pieces that just fit on top  :-*

Lesley x

« Last Edit: January 20, 2017, 08:09:07 PM by Lesley Joy »
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