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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,

    I'm new here and am really hoping someone can help me. I started shedding suddenly about 6 months ago. GP noticed dandruff & prescribed anti-dandruff shampoo. She also did basic bloodwork - iron/thyroid/vitamin B were normal. Shampoo didn't help & I was referred to a dermatologist. She did a pull test & although she didn't mention if it was positive or negative, she said they were all telogen hairs. I've been put on steroid lotion to minimise what she thinks is eczema/dermatitis. A month has passed and the shedding & scalp seem better - there is still some eczema/dermatitis but a bit less inflamed. She's put me on steroid cream to calm it down further and says she may do a biospy when I come back in 3 weeks. She said this is to see how much is eczema and how much is related to genetics. I'm worried that this is a bit drastic (and expensive) so here are the facts:-

    -Diffuse hair loss for 6 months. Was up to 150+ a day, now up to 110 a day & generally decreasing since starting steroid lotion. Probably I lose an average of 80 a day but this still feels like more than normal.
    -Lose mainly long hairs from back where eczema is worst, some medium and I also sometimes notice a few baby hairs when washing.
    -My parting is becoming wider although not noticeable yet to others.
    -Not sure about regrowth although some hairs that come out are finer than others and a couple have been kinky.
    -Patches of inflammation & flakes although not noticable
    -Sometimes itching or burning scalp - esp with the lotion which is why we're trying cream
    -Had wedding stress/came off pill 3 months before shedding started (although I previously came off BCP and went back on and it didn't seem to affect hair)
    -Dad and brother have thinning hair (brother is only 29, I'm 32) Mother had thick hair, no female baldness in any family members
    -Periods regular since coming off pill and basic blood test showed hormone levels ok

    My questions are:-

    1) Should I be asking for more blood work first or go straight for the biopsy? Any point in starting medication before biopsy result?
    3) Is an inflamed scalp more likely to be TE or Androgenetic Alopecia? (or could this simply be hairloss due to eczema/dermatitis?)
    3) Is Androgenetic Alopecia common and does it normally lead to noticeable baldness? Is this likely to be a time-frame of months or years?
    4) Can you have Androgenetic Alopecia and still maintain your hair as normal with medication if caught early?

    I'm worried since she mentioned the biopsy. Until then I just thought I had eczema or at the worst, a case of TE. I read that 90% of biopsies come back positive for Androgenetic Alopecia so I would prefer not to go through all the worry and expense unless necessary :( However, if Androgenetic Alopecia is treatable then I guess I should start treatment as I don't want my parting to widen any further.

    Please help, this is all new and I'm not sure what to do for the best :sobbing:

    Many thanks! :)

    Skylark
     
  2. Bummer

    Bummer Established Member

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    Hey,

    I can't answer half of your questions and most of my answers are going to be general so they may or may not apply to you.

    Sensitivity to testosterone can cause dandruff and dermatitis (not eczema as far as I know, so I guess it depends on what you have). Did you have the stuff when you were on the pill? That would be a decent indicator of what the cause of the problem is. The pill lowers testosterone so for most, the face/scalp is less oily and often there is less problems with dandruff and dermatitis.

    For many (me included), going off the pill kick-started the Androgenetic Alopecia. For me it started with a TE, stopped, grew back in, then started shedding again and didn't stop. But everyone is different so at this point it could still just be a TE in your case. I don't think mine lasted over 4 months though I could be remembering incorrectly... it was a while ago.

    I've always wondered if a biopsy is useful early on. I think they are looking for miniturized hairs, but at the 6 month mark I'm unsure how far progressed Androgenetic Alopecia would be. This is just a personal opinion so take it for what it is worth but I'm not convinced a biopsy would find anything useful this early on.

    Medication (anti-androgens, a hair-friendly birth control pill, DHT blockers) work for some but not for all. The thing I will stress is that the earlier you start treatment the more likely you are of recovering the majority of your hair.

    Also, you can have normal hormone levels and still have Androgenetic Alopecia. It's often more a matter of whether or not you are genetically sensitive to it.

    Unfortunately this is all general information and it's hard to know for sure unless you feel like you have multiple "symptoms" of Androgenetic Alopecia like acne, hirsutism, oily skin/scalp. But many people have those things and don't lose their hair... so go figure.

    Good luck. I hope it resolves itself.

    Btw, I can't remember exactly what I read but I'm pretty sure I remember reading something that said sterioid creams should not be used for a long period of time as they will thin out the skin. Might want to look into that in case your derm wants you to stay on it. I could be remembering incorrectly though. :p
     
  3. Skylark

    Skylark Guest

    Hi Bummer,

    Thank you very much for your reply!

    The skin specialist described it as dermatitis and then later as eczema so I'm really not sure. I never had it before, including when on the pill (I was on Microgynon for 12 years - not sure if that is one that is likely to trigger Androgenetic Alopecia when stopped.) I hadn't thought that the two skin conditions could point to different hair conditions.

    I don't have oily skin - it seems to be more of a dry skin problem so maybe that is more likely to be eczema. All my skin (and eyes) have been increasingly dry lately. You say that Androgenetic Alopecia is often characterised by oily skin - could drier skin also be a sign?

    I'm really not sure about this biopsy. I wonder if she thinks it's been thinning for longer, but I haven't noticed it. In fact, looking at old pics, my parting has always been fairly wide and now I think I may be just paranoid.

    The other factor is that we may start trying for a baby within 6 months and I've read that most hair loss treatments can't be taken while pregnant or breastfeeding. So I'd hate to be diagnosed with Androgenetic Alopecia only to find out that there is absolutely nothing I can do at this stage. :shakehead: Do you know if there are any options while pregnant?

    Thanks so much for replying, I'm trying to gather lots of info so I can make an informed choice. I sympathise that you're going through this too. Have you had success with treatment?

    Skylark

    PS. I've heard about the skin thinning with steroid lotions too. Not ideal, but I'm really hoping it will stop the shed. It does seem to be slowing. It hasn't really calmed my scalp over the last month but she's hoping the cream version will help.
     
  4. Bummer

    Bummer Established Member

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    Hey Skylark,

    I don't think there are any treatment options for those who are, or want to become, pregnant. However, if it makes you feel any better, pregnancy can be one of the best things for hair. Your estrogen levels skyrocket during pregnancy and this helps your hair out a lot. You just have to be aware that the estrogen levels in your system will plummet afterwards so you will probably be in for a lot of shedding about 3 months post-pregnancy. Sucks to be sure.

    I'm not sure if dry skin is associated with Androgenetic Alopecia or not, but everyone reacts differently so it could be a sign of something specific or unrelated to your hair loss. Lol. I'm sure that was helpful... :p

    I've tried just about every medication available for Androgenetic Alopecia. Unfortunately they did not work for my hair, but there are those that just don't respond to treatment and I seem to be one of them. I did get some of the other benefits of anti-androgens like a lessening of my body hair (which was excessive so this really was a benefit) and clear skin that doesn't get oily.

    Sorry I can't be more informative. Hair loss can be caused by many things, I think Androgenetic Alopecia is just one of the most common. Sometimes you never get a difinitive answer and you just have to narrow down the possible causes by a process of elimination.
     
  5. sadness

    sadness Guest

    I feel this statement is so true. We ourselves seem to know alot more about what is going on w our hair and what does and doesnt work.

    In the area of hairloss, it seems the only thing doctors are good for are ordering tests. Sometimes it feels like they dont know anything at all...or dont care.

    It seems that there are very few of us here that are able to find a good doctor that really cares about the root(sorry for the pun) of our problems. Ive seen so many doctors and oddly enough the one that knew the most and CARED the most is my chiropractor of all people. :) God bless him. He truely is amazing!

    With so many things going on with you right now(eczema/dermatitis/going off the pill), its actually a good thing because you have alot of angles to work from. Good luck and keep us posted.

    Take care, Melissa
     
  6. is this it

    is this it Guest

    Hi Skylark,

    I have no answers for you, unfortunately, but your story sounds so familiar to mine I felt compelled to comment. I also have some thin and kinky regrowth. I find that some of the thin hairs fall out, and they are quite small.

    I also recently found out I have some dermatitis. The doctor told me to use selsun blue, and that was it. I'm getting a second opinion as yesterday the area was on fire, and I noticed I had experienced a lot of hair loss there. I'm hoping someone will finally take my hair loss seriously.

    In my (totally uninformed) opinion, I would say go for the biopsy. The worse that will happen is that it will be inconclusive, on the plus side, you may find an answer, which would be wonderful! I find the old adage "knowing is half the battle" to be very true in many ways.

    Whatever you decide, I wish you luck!
     
  7. Skylark

    Skylark Guest

    Hi everyone,

    Thank you very much for your advice! The dermatologist wants to clear up whatever is inflaming my scalp but it just seemed a bit drastic to have a biopsy so early (I've only seen her once and although she did a pull test, she didn't actually examine my scalp in detail - just took my word that it was itchy and that my husband had seen red flaky patches.)

    'Is this it' - is Selsun Blue a shampoo? How long have you been shedding for and have you had any other tests yet?

    'Bummer' - I'm sorry you haven't yet found a treatment that works. What stage are you at and how long has your hair been thinning?

    I've been looking at the hairs I shed and most are long, thickish hairs. I've probably seen less than 10 kinky ones during this whole time (6 months.) However, a few long/medium length hairs are thinner than others. There are a few short hairs although they tend to be normal thickness - maybe just normal regrowth? Is it natural for hair strands to vary in thickness? The derm never asked about any of this either. :shakehead:

    I think my parting and hairline may be slightly thinner but the pull test showed more being lost from the back where inflammation is worst. Thankfully it's not that obvious yet. (My hair isn't that thick. It's wavy and a bit frizzy. According to hairdressers, it's fine but I have lots. Maybe not any more, I haven't been since the shedding started!)

    I read somewhere that 90% of biopsies show Androgenetic Alopecia, but somewhere else that most are inconclusive? (Neither of which sounds positive!)

    If it is Androgenetic Alopecia, could I go on medication for 6 months and then come off to try for a baby? I'm still torn between going through with the biopsy, or asking for her to investigate in other ways first. I'm not sure if it's better to know, even when there is nothing you can do. I'm also moving back to the UK in May (from Australia) so this would be cheaper over there but the wait would be longer.

    Thank you so much for your replies, it really is helping to hear from other people with hair loss :) I really sympathise that we're all stuck with this uncertainty - at least until we find what works.

    Skylark
     
  8. Bummer

    Bummer Established Member

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    Skylark,

    My hair has been thinning for about 7 years. I just recently tried the last medication that could possibly have helped my hair and when that didn't pan out I shaved off the top and bonded a topper. I litterally just did it (on Sunday) and posted a thread about it. For me, knowing I had tried everything to save my hair and that it wasn't going to get better was what I needed to move forward with my life I guess. Anyway...

    As to your second question. I hesitate to offer advice on this as it has to do with pregnancy so I am going to just give some general information based on what I have read. Most (you will need to check to be sure) anti-androgens have a very short drug half-life. Which is to say that they clear out of your system relatively quickly. I think finasteride and spironolactone both clear out of your system pretty quickly. You would also need to give enough time for the effects of the medication to wear off. For example, if you take finasteride, which blocks DHT (which is necessary for male fetal development), it probably isn't enough just for the drug to clear your system. You would need to give your body time for your DHT levels to normalize.

    With something that clears your system quickly I would say that conservatively you might be okay after being off the medications for 2 months but please, please, please discuss this with your doctor before you do anything! As an fyi, most medications take 2-4 months to see any results.

    I cannot stress enough that you should discuss taking anything that might effect pregnancy with your doctor beforehand and determine what the risks are.
     
  9. Skylark

    Skylark Guest

    Congrats on the topper! I looked on your thread and it looks awesome! :woot: - I'll post on your thread about that. Thank you for taking time to answer my thread during such a big week for you.

    Don't worry, I would definitely get advice on any drugs before trying for babies! I'm hoping it won't come to that as I'd read there aren't any safe ones. Hence my hesitation about the biopsy, I don't want to be diagnosed with Androgenetic Alopecia if there is nothing I can do for years. :sobbing:

    Would anyone be able to shed any light on the fact that I've read somewhere that 90% of biopsies show Androgenetic Alopecia, but somewhere else that most are inconclusive?

    It would also be great to know if it is normal to have hairs of different thicknesses or if this is a sign of minaturisation (most are quite thick but I get the odd slightly thinner one and occasionally a kinky one.)

    Thanks,

    Skylark
     
  10. is this it

    is this it Guest

    Hi Skylark,

    Selsun blue is a dandruff shampoo.

    I have been shedding since at least August 2011. I say 'at least' because that is when I first noticed it. I have had many tests. Ferritin, DHEA-S, testosterone, estradiol, ANA (then, when I got a border line positive, follow up blood work that ruled out connective tissue disease), zinc, hematology panel, glucose, lipids, TSH, vitamin D and I think that is it.

    My Ferritin is not ideal, at 33, which I am working on. Apart from that, all of my blood work has more or less checked out.
     
  11. fleur1979

    fleur1979 Experienced Member

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    Hi Skylark,

    I just wanted to say: my biobt came back inconclusive, and i do regret getting the biobsy done too soon. My hair loss is much worse now than when i had the biobsy done and i believe that it came back inconclusive, because hair loss wasn't that obvious back then.

    I also have a broter who is 29 who is thinning and a father who is thinning (i am 32 also) and my dermatologist told my that you can get the genes from your faters side of the familiy even when you there are no women with hair loss in your family. I hate to believe i will be the first one of all women in my family to get it, but if it turns out to be Androgenetic Alopecia, i will find a way to deal with it.. (it took me a while to think like that.).

    I also have dry scalp with eczema and i got ketoconazol shampoo for it, I only used it for a month (three times a day) and my eczema is still there, but it looks much better now. Maybe it can help you too..


    Fleur
     
  12. Din

    Din Established Member

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    Hi fleur,

    I wanted to ask you.. How long ago again did you do the biopsy and did you find that you had an increase in shed after biopsy? If so, when did you notice the increase?

    How many times a week do you wash now and how much do you lose per wash?

    I really think that biopsies can trigger another te. Happened to me. Like you, mine came back as normal, so that was a waste of time. I did this all to myself. I wish i never did the biopsy. I regret doing it because my situation could have been different, but then you never know...
     
  13. fleur1979

    fleur1979 Experienced Member

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    Hi Din,
    sorry to hear you are still shedding...
    I did not notice an increase in my shedding after the biobsy. I started shedding in april last year and i still am. The only difference i see is that i lose a lot of short hairs... regrowth... some thinner and some same thickness as normal hair. Those short hair are very short.. between 1 and 4 cm.

    I wash my hair everyday and lose about 120 normal hairs and about 150 short hairs. I don't count, so this i just a guess. I lose most in my bang-area...
     
  14. Skylark

    Skylark Guest

    Hi Fleur and Din,

    I am leaning against getting the biopsy just yet, especially after reading your posts. I don't want to go through it as it is likely to either be inconclusive (and therefore no help) or positive, in which case there is nothing I can do for years until I've had kids.

    Would anyone be able to shed any light on the fact that I've read somewhere that 90% of biopsies show Androgenetic Alopecia, but somewhere else that most are inconclusive?

    Fleur, our situations sound similar although I'm losing mainly long hairs at the back where most of the eczema is. I'm really hoping the steroids sort it. I know it can take a while for hair loss to stop even when the cause is removed. Has your shed slowed now your eczema is better? Do you think the eczema caused your shed in the first place?

    Mine seems to be slowing (I was losing up to 150+ a day, now it's about 120 max and often less than 100. It's still up and down though.) I don't think losing shorter ones is necessarily a bad sign - I read somewhere that when they start to grow back, they sometimes fall out again but then grow again. At least you have regrowth. I hate it when I lose shorties too though :freaked2: . Mine are thankfully quite rare at the mo. Do you know if hairs of different thicknesses a clear sign of Androgenetic Alopecia even when there are only a few thin ones?

    Din, what was your biopsy result and how many do you shed? Have either of you had more tests?

    I wish I didn't do the research - knowledge may be power but ignorance is bliss!!

    Skylark

    PS. That little blue face is actually making me laugh - I just wish I had that much hair!
     
  15. fleur1979

    fleur1979 Experienced Member

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    Hi Skylark,

    I lose less longer hairs and more short hairs since my eczema is looking better. (My eczema cleared up about three months ago. It still there, but not as much) My eczema was mostly on top of my head where i lose the most. I don't know if losing short hairs (thin and thick ones) is a sign of Androgenetic Alopecia. I guess it can go either way... Or it trying to correct itself or it is Androgenetic Alopecia kicking in.

    I can't answer your question about why a lot of biobties come back Androgenetic Alopecia or inconclusive. My guess is that it depends on how much hair loss there already is when you get the biobt done (when it is advanced, i guess they can see more) and i guess it also depends on the person who examines the biobt.. and how much they know about hair loss....
    not sure though....

    By the way, in the beginning of my hair loss i only lost longer hairs (probably because there wasn't any regrowth to fall out). Losing the short hairs started about two months ago...
     
  16. Din

    Din Established Member

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    Hi skylark,

    Before doing the biopsy, i used to wash my hair 3 to 4 times a week and lost about 40 to 70 per wash.. Sometimes more, sometimes less. I had the biopsy on april26th 2011, and by august 01 i was losing less hair. But it was up and down. I could have a few low washws and then hige shed the next. On aug 12th 2011 around three mo ths qfter the biopsy, my shed got to 100-150 per wash and this is where i am today. There just seem to be no end.

    My biopsy result came out as no Androgenetic Alopecia, no miniturization, in fact, it said that everything was normal and that i wasnt even in a te. Right. I am so done with doctors. I just went to see my last specialist on tuesday. She was horrile. She basically said that i have te or cte and that it means that 90% of my follicles or in the resting phase.,she said that if i am not willing to take systemic drugs or rogaine, she cant help me. I told her i dont have Androgenetic Alopecia, so why should i take rogaine or whatever systemic drugs she wanted me to take, so she had no answer. I asked her how much of my hair would i lose? Will i need a wig? She said, yes, i could... And then when i started crying, she just left the room and left me crying. I will never go to another doctor again. I dont need to go through the humiliation.

    I had every test in the world. I am 100% healthy, yet my hair still falls out. It sucks!!

    I wish i never did the biopsy. I would wait to do it, try to ride this out, it may stop soon, you never know!!

    Goodluck,
    Din
     
  17. fleur1979

    fleur1979 Experienced Member

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    Hi Din, Do you get any regrowth? Or nothing?
     
  18. Skylark

    Skylark Guest

    Hi Din,

    I'm so sorry that your specialist was so insensitive :sobbing: Like Fleur, I'd be interested to know if you get any regrowth - if you don't have any Androgenetic Alopecia then hopefully it will all come back. Do you know what might have triggered your shed in the first place?

    I've read on here that Rogaine, etc are useful whatever the hairloss cause. But I wouldn't be able to take these drugs while having children. Are you a similar age? (I'm 31.) My shed is similar to yours was initially (40-70 when washing .) It seems to be up again this week.

    Fleur, our situations sound similar. I'm glad your eczema is clearing up! You can't really tell I have it until you lift up my hair at the back. It is currently more flaky than it was, despite the cream, but less red. Do you know if the eczema might have triggered your shed or if it is the result of it? The derm told me that scalp irritation/inflammation can cause hair to fall out. I've never had eczema or even much dandruff before.

    Yours have both been going on much longer than mine so I really sympathise with your frustration. How noticeable is your loss now?

    Skylark
     
  19. Din

    Din Established Member

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    Hi fleur,

    I guess I have some regrowth, not a lot though because I dont see much. But, I must have it because I lose a ton of shorter hairs, so I guess I am losing all my regrowth. They just dont want to stick around.

    Skylark,

    I never had hair issues. i never shed and always had amazing hair. I took a bcp , Diane 35 for 6 months, and 3 months after stopping, I had the Te from hell that lasted 10 months. I lost brows and lashes as well. I seemed to go into recovery, but then, a few months into recovery, my young son came home with a fever and I was sick with a high fever for 5 days. A month later, another Te started again. I guess the high fever triggered it again. I freakedout and had a biopsy two months into it, and 3 months after the biopsy, had my third te start, and this is where I am today. One trigger after another. I am so tired of this, you have no idea!!

    I dont think that Rogaine is good for whatever kind of hair loss. Rogaine is good for Androgenetic Alopecia I think, so for TE, or CTE , I do not think it will work. regardless, I do not want to risk going on Rogaine, going through a bad shed and possible not being to regin hair back, too risky and I dont want to be on medication fotr the rest of my life. I dont plan on having more kids, I have 2 small boys at home., and trust me, it is more then enough..but I guess if you were thinking about kids, then i wouldnttake rogaine.

    At this point, I notice my loss mostly. I still look teh same to others, I dont think anyone woudl knwo I have hair loss, but i know, and I do not wear my hair down anymore, always I just wear it in a ponytail or braid to hide how thin it is.

    How long have you had it for? what caused it?? I am hoping this will stop soon. I really hope so!!

    Din
     
  20. fleur1979

    fleur1979 Experienced Member

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    I am not sure if the eczema might triggered my shed. I had trouble with my bone marrow and was having severe anemia when my hair loss began. I got eczema that same period. Never had it before. My bloodwork and everything is fine for almost 7 months now. So, why still shedding? One derm. is telling me that my TE kicked in a Androgenetic Alopecia. The other one is saying is should give my hair more time to recover from the TE and that there is no way to tell at this point if i have an underlying Androgenetic Alopecia or that my hair is continuing to thin because of a unrecovered TE.

    When my hair loss started i thouhgt i would be bald if it would continue for 6 months. But now, after almost 11 months, i still have hair. When i go outside i wear caps, because the wind will blow my hair up and you can see how thins it is underneath. My bangs that used to very thick are almost non-existent. I do have regrowth there, but i lose a lot of it.

    I was really heartbroken when this all started, but i am not anymore. I just hate to be in this stage where you can't really tell what it is and i need to give it more time.

    I do notice shedding less longer hairs since my eczema cleared up, ut more short ones. Maybe my hair is trying to correct itself. But it could be wishfull thinking.

    I do believe it is possible that eczema can cause hair loss. I hope yours will clear up and it will stop this hair loss..
     

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