Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: 4candles on January 19, 2017, 03:18:54 PM
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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
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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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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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Thank you again for your input CLKD. I think hair loss is a rare side effect of some A/Ds .
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I've inboxed you 4candles xx
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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
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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
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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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Hi Abby
Are you breaking tablet up then to rub on hair ? X
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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
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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
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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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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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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
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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
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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
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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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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
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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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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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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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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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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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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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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
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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
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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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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