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TE or Androgenetic Alopecia? Please help! :(

Discussion in 'The Undiagnosed' started by Skylark, Mar 2, 2012.

  1. Skylark

    Skylark Guest

    Hi girls,

    Well it turns out that TE or even Androgenetic Alopecia may be the least of my problems. I had a bigger shed today and rang the derm who called me in. She was surprised that the lotion & cream has not helped the eczema/scalp inflammation so far so insisted on a biospy. I was not keen - for the aforementioned reasons - but she said that scalp inflammation can be a symptom of some kind of auto-immune condition and would therefore need to be dealt with. I explained I didn't want to be diagnosed with something I can do nothing about but she insisted that in the case of auto-immune conditions, they need to be treated. So another factor that I hadn't expected :shakehead:

    It wasn't painful - just expensive. And results should be back by the end of the week. I was in tears though - she does not have the best bedside manner and mentioned various things it might be, then said 'for god's sake don't google them or you'll give yourself a heart attack'. Great! I just want to get to the bottom of it if it's treatable though.

    Din - you're probably right about Rogaine. I definitely wouldn't want to take drugs for life, especially just for my hair (much as I do not want to lose it.)

    Looks like we are all stuck in frustrating & scary situations! My heart goes out to you.

    Skylark
     
  2. Din

    Din Established Member

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    Hi skylark,

    Please dont worry about all those auto immune things and any thing else. My derm also thought i had it, but i didnt.this is all part of the te process. Please let us know how you are and what your results are. I am sure that everything will be ok.

    I feel sorry for anyone going through this. My life was robbed from me and i will never be the same again. I only pray that we will all be ok in the end.
    Please take it easy and do not worry. I think most derms just want to worry us to make themselves look important.
    Hugs to you,
    Din
     
  3. Skylark

    Skylark Guest

    So testing for auto-immune conditions is a common part of the journey? It came out of the blue and I was surprised.

    I noticed I've thinned on my right hairline - that's the first time I've actually seen noticable evidence, rather than the shedding. This worry is obviously not helping - sounds like we're all in a bit of a vicious cycle. Din - how much does yours show?

    I agree with your comment about derms on a power trip, although mine does seem very competent. She knew I was worried and she then mentioned various scary things (lupus, etc.) but wouldn't give me more info and pushed a biopsy on me. She might be right - one part of me would rather know than deal with the uncertainty.

    Fleur - or anyone else with eczema type symptoms - did you have any luck with natural remedies? (Shampoos, supplements, etc.)

    Anyway, hugs all round. I'm into yoga and I'm going to try to meditate - there is nothing like it for calming the mind! (Too late for me yesterday but worth a try today.)

    Skylark
     
  4. Din

    Din Established Member

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    hi skylark,

    I wear my hair in a braid or ponytail most times, so my hair loss doesnt show yet, but my hair is really thin and if it continues liek that, it wont be long before I will need a wig
    Din
     
  5. Skylark

    Skylark Guest

    Hi Din,

    I'm sorry to hear that. Are you trying any natural solutions? I can see why you might not want to take the drugs your insensitive derm suggested. Do you use anything to cover up thin patches? (Topik, etc.)

    My biopsy results came back negative for auto-immune conditions which is a relief :) Also no scarring at this point (derm thought she saw some) and no sign of Androgenetic Alopecia at this point - though I've only been shedding 6 months so maybe it wouldn't show yet. At this point she thinks it might just be eczema.

    Still have the eczema & inflammation despite steroid cream so not sure what to do next. I'm just hanging in there and will keep going with the cream I guess. I see derm next week but not too hopeful that there will be a miracle cure to this shedding.

    Anyone got any suggestions for natural ways to help reduce eczema/inflammation? Natural ways or other medication? The steroid cream is so hard to use on the back of my head, I need other options. I also know it's not good to take steroid cream for too long (it's been 6 weeks of lotion and 10 days of cream now.) Derm took me off the anti-dandruff shampoo and just told me to use mild QV shampoo.

    Fleur, I know you mentioned ketoconazol worked for you. Did it moisturise your dry scalp? Mine really needs moisture!

    Skylark
     
  6. Din

    Din Established Member

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    Hi skylark,

    I dont use toppik or any cover up.,my hair looks ok, no bald spots or anything, no one really can tell i have hair loss, but over all my hair is thin. I think i lost about 50% or more of my hair. Its been almost two and a half years for me, but i kept having triggers, i hope this will be over soon.

    You should not be using steroids. They will cause you more harm then good and when stopping, it can make the situation worse. It also thins the scalp and you will not be able to grow healthy hair if on it for longer. A natural way to reduce infflamtion is to use ACV rinses on your scalp or white vinegar rinses. Ketonozole or nizoral is also harsh on scalp leaving your scalp dry and frying your hair. I think using the natural things will be way better for you. Try to get off the steroids, you have been on it too long , it is not necessary.

    Good luck, have you ever tried acv rinses before? I do them now, and they help!
    Din
     
  7. Din

    Din Established Member

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    Hi again,

    I just wanted to say that i am hapoy that your biopsy came out ok. And by the way, if they didnt detect Androgenetic Alopecia now, then you dont have it. I think you either have it or you dont and a biopsy can tell you that at any given time. If they tell you you dont have Androgenetic Alopecia, i dont think you can develop it 10 or 20 years from now, from what i know;
    Hugs to you,
    Din
     
  8. fleur1979

    fleur1979 Experienced Member

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    Hi Skylark, I am glad your biobsy was fine too...

    I also had mine done at around 6 months. They did tell me that it could be too soon to see anything.. (they told me that after they did the biobsy... :( ). They told me: no sign of Androgenetic Alopecia, but that they couldn't rule it out either. Just like TE.

    I guess only time can tell...

    But for now... that seems good, right?

    I used keto-shampoo for three weeks (three times a week). I know it is harsh, but i wanted to get rid of it. The rest of the days i used a shampoo for dry scalp and i still do. It cleared op my scalp a lot. I still have eczema and dry scalp, but not as much as i did before.

    My next step is to go on a candida-diet. I heard it helps to clean your scalp from the inside too... Only, i love all chocolate and cookies, so that is going to be a hard way... hahaha...
     
  9. Skylark

    Skylark Guest

    Hi girls,

    Thanks for your advice. I'm going down the natural route and saw a nutritionist today who was awesome. I have various deficencies (low Vit B, fatty acids, etc.) and am on supplements to balance them out. He thinks once we sort the inside, scalp & hair will follow. Also healthy eating (I'm not too bad but could do better.) He was very encouraging and said the inflammation was now only mild. He could also see regrowth (Derm said she couldn't see any.) He said he would never have done a biopsy and thinks the derm is on a power trip! He told me to stop steroids as they do more harm than good (as you said Din.) He's a biochemist with a medical science degree and many years experience so not just a quack.

    I've also discovered a range called MooGoo - they do natural shampoos and scalp creams specifically for eczema and sensitive scalps. I'm using the shampoo and scalp cream which are really soothing and contains things like apple cider vinegar & almond oil. Unfortunately I think they're only available here in Australia and in Ireland though. I'm moving back to the UK so will need to stock up (I don't work for them by the way!)

    Din - did you have really thick hair when this started? 2 and a half years seems a long time to shed and still not show. Do you get regrowth? It's good that it's not noticeable to others.

    Fleur - yes good news that no sign of Androgenetic Alopecia for either of us so far... And yours is growing back in? Good that you're going down the nutrition route too. It definitely can't hurt to try.

    Hugs to you both, Skylark
     
  10. Din

    Din Established Member

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    Hi skaylark,

    For some reason, no one can tell i have hair loss. I can tell because i know what my hair was before. When my hair is not washed after two to three days, you can totally tell because it looks thin, but you cant tell otherwise. And no, i didnt have thick hair before all this. I had normal hair and i guess i must have re growth otherwise i would be bald by now, but i see that i lose a lot of my re growth, so i dont know. I never see an re growth...,i see a few strands here and there when i look, but i must be having a lot of it because i lose a lot of it...
    One doctor told me that with cte, your hair will be thinner, but no one can tell. Another doctor told me that i may need a wig, so i dont know who to believe. I guess no one really knows and thats what makes this so scary.

    I will definately update if anything changes and i get lucky for this to stop, but i was never one of the lucky ones so i am not holding up Any hope.

    Din
     
  11. Din

    Din Established Member

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    Hi again,

    I was going to say tha although no one can tell yet, my hair is at a point where it is dangerously thin. The way things are going, there is no way that i will be able to not cover this up. I dont know what is going to happen to me and i think that i will be in a wig by summer. The not knowing is very scary,
    Din
     
  12. fleur1979

    fleur1979 Experienced Member

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    :agree: the not knowing is really scary...

    I am looking into bonding-options for if things won't get better. I keep getting regrowth, but i lose lots of it. If i shake my head above the sink, there are about 40 short hairs...regrowth... every time....
     
  13. Skylark

    Skylark Guest

    Oh girls I feel for you both. I agree that the uncertainty is the difficult. part. Din, my derm said that with CTE hair gets thinner but not so others can tell-which supports what one of your derms said. Hope that reassures you. And at least we're all getting regrowth.

    My scalp is inflamed again today. I hope it wasn't a bad idea to stop steroid cream. So hard to know what to do for the best.

    Skylark
     
  14. Skylark

    Skylark Guest

    Hi Din and Fleur,


    Just thought I'd check in and see how you're both doing. After 5 months, my hair loss is still the same (it has now been shedding for a year in total.) It fluctuates but I still lose too much. Not noticable to others but so frustrating. Still have inflamed, slightly flaky scalp. I've moved back to the UK and seen a derm on the NHS who didn't really even look at my scalp - when she heard my dad is thin, she just said it's natural hair loss which is very common and just something to get used to - prob caused by coming off the pill or a virus I had. She said that the scalp inflammation was a separate issue. She noticed that I have low ferritin (41) and said that upping this with iron tablets would help regrowth although it wouldn't stop the loss. It seems that as soon as she heard there is a family history on the male side, that was the end of it - just get used to it.

    Despite family history, I still think there is something more to this - I have obvious regrowth which is reassuring (normal thickness hairs) but obvious shedding too including little ones and an unhappy scalp. Most of the shedding is long hairs and from the back where my scalp is red in patches (occiput?) although there is some from all over. I thought that genetic hairloss was more a gradual thinning on top than an obvious shed. Can anyone shed any light on this? Is it just a case of accepting that I'm going to just keep shedding and thin out, or is there more that can be done? (Steroid cream temporarily gets rid of redness, but nothing works long term. I've tried mild shampoo, anti-dandruff shampoo and coal-tar.) Could low ferritin be the answer? No one has picked up on this yet (annoying that in Australia the derm went straight for a $500 biopsy with inconclusive results and seems to have missed the iron issue.)

    How are you doing? Just thought I'd check back in as sometimes the not knowing gets me down. x

    PS If anything, my shed is worse since the 3 weeks of iron. Could that be concidental? It seems as bad as it was at its worst a year ago :(
     
  15. fleur1979

    fleur1979 Experienced Member

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    Hi Skylark,

    Sorry to read you are still shedding.

    I also don't know what i have Androgenetic Alopecia or something else. Same as you: no female hair loss in family, but males are thinning. I just can't believe i will be the first women in my hair loss struggling with this hair-gene.

    I also have a lot of regrowth which appear to be normal in thickness, but i lose them too. Along with my longer hairs and a lot of weird thick, kinky hairs.

    It is hard not to know what is causing all this...
    If only i knew what it was.....
    I guess you feel the same....
     
  16. Skylark

    Skylark Guest

    Hi Fleur,

    Good to hear from you again. I've still been shedding since I was last here but realised that coming on the forums makes me worry more. But today I need to make contact with others going through it as I'm sick of people saying it's nothing and that 'it looks fine at the moment' I'm very grateful that it looks ok to others but am worried I'm on a slippery slope of Androgenetic Alopecia and that the shedding won't stop - in which case, it's only a matter of time until it shows more. (I already think it shows but others don't seem to notice.)

    Do you have scalp issues too? I just feel that with burning sensations, etc there must be something going on - or could this still be Androgenetic Alopecia symptoms? I know you've lost most round your bangs but are you shedding all over?

    Frustrating! But at least you understand what others don't seem to - that it's horrible to watch your hair shed. I'm very glad it doesn't seem to be anything serious, but not yet at the point when I can just accept what I can't change, as I am still looking into changing what I can.

    It seemed with the derm in the UK that she automatically says 'natural hairloss'. She says it's extremely common and was like she had a little speech prepared without actually looking at me. Surely at least half of the women in the world must have male family members who are bald, yet they don't seem to get Androgenetic Alopecia - at least noticably. Or if it's extremely common, maybe everyone else is in toppers!

    And surely our normal regrowth is encouraging. That's what I hang onto. I've stopped counting them but hate to pull out ropes in the shower.

    Hugs and thanks for being here.

    Skylark xx
     
  17. fleur1979

    fleur1979 Experienced Member

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    Appointments with dermatologists always make me very sad. They just don't care, don't know, or don't want to know.

    My hair loss is worst around the front hairline, bangs, temples and the hairline on the sides. On top and the back is thinner than it used to be, but still ok.

    I have some eczema on my scalp that comes and goes. Lately it is gone, but still shedding like crazy.

    I agree that if we can inherit these genitics from male family members, than almost all my friends would have a chance of getting it. But nobody i know is suffering from this.

    I feel like the road to acceptance can only come if you know what is going on and what is the cause for the hair loss. At least that counts for me.

    Hope you can get some peace of mind!!

    Hugs back to you...
     
  18. Din

    Din Established Member

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    Hi Girls.

    yes, I am still shedding. almost three years of this crap. It seems like it will never end. Weird thing I noticed, my shed picked up a lot by end of july. I am now losing 150++++ per wash, sometimes close to 200. same thing happened last year at exactly the same time. I wonder if it is a seasonal shed..along with cte? I also wish I had answers...I really wonder how I am not bald by now...BUT.... last month I went and ordered a wig. Yes, I finally did it. It cost a fortune, but I am sure it will be just like my old hair was, because this place that I bought it from is amazing!! Most religious jewish women buy from there, and they know their wigs! They look so good, you will not be able to tell its a wig, even if you inspect it. It is not ready yet, I go back in a few weeks to try it on and for a fitting, and then it will be ready. I finally did it, and I cant wait to get it. I will not wear it now, but it is comforting to have, just in case things get really bad.

    You still can't tell I am losing hair...don't ask me how. My hair looks completly normal to others. But I know. I wear it either in a ponytail or put it up in a clip, so maybe that's why, but my hair is thinner all over. I must have lost 60% of my hair easy!! I also have some burning, pain , itching, not every day, but it always comes back. I think it is part of the process, whatever it is. I hate this, I really do, because it consumes your life, so I hope that maybe by getting the wig, things will get better. Mind you, she didnt want to put clips on my wig. she said that because my hair loss may not be permenant , she does not want to put clips on because it may cause damage to my hair. so she is putting some sort of a band or something, not sure what it is called, and it will be just as good as clips, but will not cause damage.
    Never thought my life will come to this,. but , what can we do? This is really the worst thing that can appen to anyone.
    I am sorry you guys are still shedding. i hope it will stop for us all. we just have to keep hoping,
    Din
     
  19. Skylark

    Skylark Guest

    Hi Girls,

    Din - good news that you are prepared with the wig! I remember you saying you might need one by summer but at least you don't yet :) Preparing must give you peace of mind though. For all of us, it's the not knowing that is hard to accept - especially as the shed is a constant reminder. Also the fact that 'specialists' don't seem to take it seriously and neither does anyone except for the people in here! It seems that private health systems (as I experienced in Australia) test like crazy and cause unnecessary worry, whereas public systems (back in the UK) are the opposite and don't do anything. Where do you live?

    Mine is worse than ever at the moment - about 40 just from a brush this morning. I dread touching it at the moment. Din - it's interesting yours is also worse at the moment. My GP said it's very common for a seasonal shed of a couple of months to happen as the weather turns and mine has definitely got worse since the weather has got colder.

    While searching for a trichologist online, I found this info on a hair loss clinic's site:-

    "It's estimated that one in four women are affected by female pattern hair loss. Whether it will affect you, all depends on whether both your parents carry the dominant hair loss gene. Fortunately, women have higher levels of Oestrogens, so if only one of your parents carries the gene then - unlike with Male Pattern Baldness - it's unlikely to ever activate as it would in men.

    This type of hair loss spreads more slowly in women than men. The hair on the top and front of the scalp gradually becomes finer and weaker, and the shaft diameter is reduced.

    In more advanced or severe cases, the crown area and the hair growing above the ears are also affected. When this happens, levels of the male hormone testosterone are raised, which may cause other symptoms like; oily skin, acne and Hirsuitism - a masculine pattern of excessive hair growth on the face and body. Menstrual disturbances and lowered fertility might also accompany this problem."

    This relates to our confusion about our family history. I don't know of any women who have Androgenetic Alopecia in the family and according to this, baldness on just the male side shouldn't cause Androgenetic Alopecia. Also, I don't have oily skin, acne, irregular periods or any of these other symptoms - if anything, my skin is dry. What about you? Having said that, if one in four women will be affected, then our chances are high (as are many of our friends!)

    I do think the forums can give a skewed perspective as people whose loss has improved don't come here any more - this is why I try not to spend too much time in here. But I'm scared and tired of being misunderstood and it is a relief to know others understand.

    I am going to try to be patient for a couple of months and see if the iron helps.

    Skylark x
     
  20. Skylark

    Skylark Guest

    Actually no I'm not! The shedding has been way worse this week and since it's been a year now, I'm going to see a trichologist and see if someone who actually specialises in hair can give me any advice. I hope that it's just seasonal shedding at the mo, but want to get to the bottom of it... I'll keep you posted x
     

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