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CTE: can you lose all lengths/thicknesses of hair?

Discussion in 'The Undiagnosed' started by hoping4best, Jun 5, 2016.

  1. hoping4best

    hoping4best Established Member

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    Another question: I'm losing long telogen hairs along with short thin hairs, and lengths and thicknesses in between. There's not always a bulb. It's extremely diffuse except that my temples are harder hit; they shed a ton and regrow and then shed again. Has anyone with CTE experienced this?

    Thanks so much.
     
  2. hoping4best

    hoping4best Established Member

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    From reading old threads, I think I've answered my own question: yes. You can lose miniaturized hair if you have Androgenetic Alopecia, you can lose new growth if you have TE, and everything in between. It's all really unclear and varies a lot among individuals.

    My shedding is reaching new levels right now. I am losing 200+ per day, every day. New short light hairs that have grown in on my temples/the triangular area fall out with a gentle tug. If I run my hands gently through my hair, no tugging, 1-5 hairs will come out every time, all lengths, all sizes. In the shower, over 100-150. I have another 3 weeks until dermatologist #2 of 3 (the 3rd recommended derm in my area doesn't have an opening until March 2017!, and I'm booked with her for then). The texture of my curls seems on the brink of changing as my density decreases.

    It's just so stressful not to know when/if/how the shedding will end. Trying to hold off on minoxidil until my next appointment, at least. I ordered black currant seed oil, more fish oil, and am taking Evening Primrose oil, too, along with zinc and biotin. I have castor oil w/ peppermint to massage into my scalp right after a shower, and that feels nice, and conditions my hair. I'm off SLS shampoos. I'm not sure what else to do. I know from reading here that I need to get info, keep trying to find a knowledgable doctor, and mostly wait and see.

    It helps just to write it out sometimes.
     
  3. hoping4best

    hoping4best Established Member

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    I got an Androgenetic Alopecia diagnosis today, from a derm I definitely feel like I trust. No biopsy, but we can all see recession at my temples big time, and the miniaturization is very clear there. I can see it, too. (He offered biopsy but we both agreed that we had enough info without it). The top of my head and bang area is thinner, my back and lower parts of my head are still really good.

    He's also looking into if I might also being having a TE at the same time, to see what we can address, doing blood work, and is going to coordinate with my endocrinologist. He leans toward seeing if it might be appropriate for me to try Spironolactone first, and is less enthused by minoxidil as a solution. So, I'll go through the rest of the testing process and see what else comes up, if anything (he wants to test DHEAS, ferritin, and a couple more things). It is also possible that the HRT (which I am supposed to be on b/c I'm too young to have *zero* estrogen/progesterone) is causing extra loss. It is a side effect of the Minivelle patch. So I could also explore changing HRT methods as another experiment.

    I'm feeling pretty sad right now. I'm 41, went into sudden menopause after a ovarian tumor at 38, and this last 1.5 years of just crazy, crazy shedding has been really stressful, and a grieving process of losing my reproductive system, and now also my hair as I used to know it. You all know what I'm talking about. I'm glad to have some more science being thrown at me now, and some more clear things to investigate.

    I am crying right now and know I need to go through the sad feelings. But I also am remembering that I have an incredible life: a wonderful kid, an amazing husband, a job I love, beloved friends, a wonderful place to live, and aside from my POF and very well-managed anxiety & depression, I am (knock on wood) very healthy. I am so grateful for all of those things. So, so grateful. I will be able to cope with this. But yeah, some sadness first.

    My derm also said I have really good hair overall still, so that's encouraging. He said it will progress and we don't know how much, so of course that's the hardest part--the not knowing.

    Off to have my reproductive endocrinology blood panels sent to my derm's office...
     
  4. Wolf924

    Wolf924 Experienced Member

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    Please do not cry. I know this is devastating and I totally understand why you would feel such sadness but know that you can still regain some if not all your hair back. Lots of ladies here have had success with Spironolactone and or Rogaine, some with supplements, others with diet change and iron. There will be a treatment option that you will be able to start and that feels right for you. Keep coming here for support and hang in there <3
     
  5. hoping4best

    hoping4best Established Member

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    Thank you, Wolf. Your kindness on this board, and your positivity, have been a huge help to me, and I'm sure to others as well. Thank you, so much. :heart:

    It was rough to hear the diagnosis, but I do feel like there is hope.
     
  6. alexa_

    alexa_ New Member

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    hey there H4B,
    try to not be so sad about it, and try to realize that "at the end of the day it's just hair!". Like you've said, you have your health and are surrounded by loving people.
    Ever since my own hair loss disaster started, I have been scrutinizing other people's heads. And I'm noticing that soooo many women are dealing with thinning/shedding. Just today during a meeting at work, I was looking at the back of one co-worker and she had ~10 hairs on her sweater, a fairly wide part and average/low density overall. At least 40% of the women in the room had what I would consider a wide center or side part.
    What I mean by all this rambling is that I know we, as women, attribute so much importance to our hair, it's how we've been brought up, but what you might be obsessing over, other people will not notice, or will not consider as important.

    More specifically about your hair loss situation - not saying that your doctor was mistaken, but clearly, I think you agree, there is a TE going on, regardless of whether there is Androgenetic Alopecia in the mix or not. I personally think many women are being overly diagnosed with Androgenetic Alopecia when in fact it's TE.
    When you say miniaturization on the sides - do you mean there is less hair or thinner diameter of the hair in that area? Many people have thinner, shorter hair on their temples. Also, the temples are not usually "hit" in Androgenetic Alopecia, it's mostly in TE.
    Also, another thing to keep in mind - estrogen is super important for hair growth, which is one of the reasons women have great hair while pregnant and lose a lot postpartum and during meno. Your system has taken a great hit with a decrease in estrogen/progesterone. Although you're not producing hormones on your own, I believe when one is on HRT the body doesn't behave as if it's in menopause. IMO, HRT is helpful rather than harming in terms of hair. There have been numerous studies on that, and I don't think they are wrong. Think about all the trans M->F. Most of them get such great hair after their transition.

    I've been reading some studies that Finasteride (an androgen receptor antagonist usually prescribed only to men) can also be prescribed to women who no longer want to have kids. Maybe you can look into that with yuour doctor? IMO Spironolactone has many unwanted side-effects and I know it's prescribed in the US for acne and hair loss, but it does a number on your kidneys. My Mom is a physician and she tells me how most patients on diuretics for hypertension (Spironolactone is a diuretic as you know) end up having kidney problems in the long run. Honestly, hair is not worth that as far as I'm concerned.

    Also, PRP might help, it's costly but if you can afford it, why not? User nes has started a thread on that.

    Anyway, try to keep your chin up. As far as I'm concerned, I've decided that if my hair loss continues beyond the point I no longer deem acceptable, I will shave my head and buy an awesome wig. I'd rather have wonderful fake hair than horrible hair of my own. If Christina Hendricks can do it, why can't I?
     
  7. hoping4best

    hoping4best Established Member

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    Alexa, thanks for your thoughts. They are similar to ones I've been having myself. This new derm didn't biopsy (because he said he could just see it, so what's the point?), or even use a magnifier of any kind. He just looked at my temples and said basically, "I can see you have receding temples with thinner hairs (in diameter) that are going through a shortened growth cycle. Those are miniaturized follicles--I can see that clearly [with his naked eye, apparenrly]. And you have some thinning at the top. That's an Androgenetic Alopecia pattern. And maybe something else, too." (He also said he was bummed when he saw I was coming in for hair loss, because there's very little that can be done, yada yada. That's not super encouraging, thanks, dude.)

    But though I've been losing hair for a year and half, it's seemed to come in waves, and worsening with each wave because I don't recover first. Right now, it's just bonkers. Shorter, thin temple hairs just come out if I touch my temples. Long hairs come out all day, as well as short ones, and weird super thin filament-like ones I've never seen before.

    I am not saying I may not have some Androgenetic Alopecia going on. But this loss is so unlike anything that has ever happened to me before. I have never had PCOS or oily skin (it's super dry), or any other high androgen symptoms. I've already decided I think I'd try minoxidil before Spironolactone--I have enough hormone issues as it is. But I will look at finasteride. And I don't knew what PRP is but I am gonna go read about it. :)

    In the mean time, I'm only about a week into an increased estradiol dose, a week into better supplements, and waiting to get some more blood tests. So I've got some waiting to do.

    I love your attitude about all this. I am not yet at a place where I feel comfortable with the idea of wearing hair. I wonder if I might be the kind of person who'd wear hats and scarves. I dunno. But I am not at all closed to the idea.

    Thank you again, Alexa.
     
  8. hoping4best

    hoping4best Established Member

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    Nes, thanks. You're right...in my heart of hearts, I don't really believe this is all Androgenetic Alopecia. It doesn't run in my family at all.

    Due to a benign tumor, I only have one ovary left, and it's not working. And that menopause happened pretty suddenly, 3 years ago, when I was 38. Then there was a lot of mis-handling of my hormones for a while. I noticed the loss about 1.5 years ago, but it seemed to resolve, and then started again. It's only been 7 months since I got on significantly stronger HRT, and there's been some fine-tuning of my estrogen during that time, down a little again, and then back up. I know hair takes forever to respond to stuff. In short, I've been on a hormone roller coaster for over 3 years now.

    I did just find a place with good reviews that does PRP not too far from me, but they also do hair transplants, and I get the vibe from their site that transplant$ are their favorite thing. So I'm going to take your advice and ask around for an NP or someone else who may do it.

    At last check my total testosterone was 8.1, my free T was "under 3", and they didn't give me ranges. My estradiol was 91 but my dose just got upped. My derm is reviewing that blood work and is supposed to call this week to order more. I'm going to ask for all I can, and get ranges.

    Thanks nes so much for sharing your experience. It's super helpful.
     
  9. sarvnaz123

    sarvnaz123 Established Member

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    Hoping4best,

    I just wanted to provide you with some words of encouragement. I have Androgenetic Alopecia. I always had baby fine hair on thin side and when the shedding with Androgenetic Alopecia started (I was 35), it got even thinner. I went to many dermatologists with no luck and finally I found a hair specialist that gave me the correct diagnosis and treatment, and now 1.5 years in to the treatment, my hair is looking much better.

    What I am trying to say is that, if you don't have Androgenetic Alopecia in your family, the chnaces of you having Androgenetic Alopecia is very very low and even if you do have Androgenetic Alopecia, it will be very very mild, your follicles will recover eventually once everything stabilizes, but even if you do end up with a case of Androgenetic Alopecia, there are solutions out there that will help you keep your hair.

    IF you live in the Denver area, I know a really good hair specialist that I can recommend. He literally gave me my life back!
    Thanks
     
  10. DisTressing

    DisTressing Established Member

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    Hi hoping for best,
    I strongly advise you to seek out a dermatologist who specializes in hair loss. If your derm does not have this expertise, you should absolutely question the diagnosis. Even trustworthy derms are known to confuse CTE with Androgenetic Alopecia, and the diagnostic process requires a good deal of expertise. It is much more complex than looking at your scalp. Unless I am missing something, your derm diagnosed you with Androgenetic Alopecia by looking at your temples, bangs and top of your head. I understand miniaturization was also seen at the temples. None of these findings by themselves lead to a conclusive Androgenetic Alopecia diagnosis and are common to CTE and TE. Severe temple area hair loss has been linked with CTE, although it is true that temple loss may occur in Androgenetic Alopecia. As of this time you haven't even had a blood test done, although women with Androgenetic Alopecia can certainly have completely normal bloodwork. To make that diagnosis without first determining if an underlying medical condition exists is very premature.
     
    TinaM1968 likes this.
  11. hoping4best

    hoping4best Established Member

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    Thanks so much, both of you. I live in a rural area in the northeast. There are 3 decent derms near me. I've been to 2, and the 3rd cannot see me until March 2017 (and yes, I'm booked!). I also see a reproductive endocrinologist (RE) for my Premature Ovarian Failure (POF).

    None of these derms particularly specializes in hair loss (and yes, DisTressing, he diagnosed me with a quick look at my temples with his naked eye; he looked at my scalp for about 10-15 seconds, max?). Though this one I went to last week has some fancy-schools pedigrees, he literally said he was disappointed to see a patient on his books with hair loss, since there's not much that can be done but for Spironolactone and checking ferritin. My iron and zinc have been checked, as well as my estrogen, testosterone (free and total), thyroid hormones and adrenals. My RE put up my estrogen patch b/c some specialists believe that someone my age with POF should have estrogen around 100, mine was 91. Nobody's tested my ferritin. Derm #2 wants to check my DHEAs(?) and my ferritin. He's reviewing my blood work to date, and I'm waiting for him to call with the order for the blood tests he wants.

    If anyone knows of a good hair loss specialist in the northeast, I can travel. I can get to NY, CT, MA, VT, NH, ME fairly easily. sarvnaz, I am so glad you have a great hair loss doctor. I love living rurally in so many ways, but health care is not one of them.
     
  12. DisTressing

    DisTressing Established Member

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    Ok - so I am ready to completely dismiss what you were told about your hair loss by someone who is not an expert in the field and who looked at your temples for 10-15 seconds. I cannot tell you if you have Androgenetic Alopecia, but I certainly CAN tell you that by no means can one distinguish CTE from Androgenetic Alopecia in this fashion. I've corresponded with many hair loss dermatologists on this very point. As I mentioned earlier, the process of differentiating these conditions is far more complex than glancing at someone's scalp.

    It's interesting that you also noted a zinc deficiency. Has this been corrected? One of the numerous question I've posed to specialists was specifically about zinc deficiency affecting regrowth. According to Dr. Donovan, a hair loss specialist in Toronto, zinc deficiencies are fairly uncommon, but he and at least one other specialist I heard from agree that zinc can impact your ability to grow back lost hair.

    Some parts of your story are similar to mine - waves of hair loss over 1.5 years, very diffuse, with temples hardest hit, although I estimate 50% of my density was lost. Many dr's, while they disagree on practically everything else, are in agreement that whether or not you have Androgenetic Alopecia in your family makes no difference. This condition is described as "multifactorial". The gene can come from either side and can also skip generations.

    Whoever told you that "there's not much that can be done" for hair loss besides Spironolactone and checking ferritin is clearly out of his element. My first consultation was with a derm specializing in telogen effluvium who wasn't sure what to make of me because I had so much hair, so my next one will be with someone I think has more expertise, and since it's a free consultation, at least I am not wasting money on it. I'm in NJ. Is it a problem for you to travel here? If that one turns out well, I will recommend him. If not, I am hoping for a consult with a top hair loss expert in Philly. Hoping, because he doesn't see everyone who requests an appointment.
     
  13. Leelees

    Leelees Established Member

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    Hi DisTressing,

    I am in NJ, near Philly. Could you share (in a private message) the two experts you mentioned who are in this area that you plan to see. Thank you!
     
  14. hoping4best

    hoping4best Established Member

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    I am a bit too far north to be able to get to NJ or Philly in a day, but I really hope this doctor is helpful to you, DisTressing. I have been taking zinc for months but it hasn't been re-tested. If derm #2 ever calls me for new blood work (saw him Thursday... still waiting for a call and new blood work order...sigh)...I'll ask for my zinc to be re-tested. As I wrote somewheres, derm #2 did offer a biopsy, but said "I can tell you right now if I biopsy your temples, it will return positive for Androgenetic Alopecia; if I biopsy the top of your head, uncertain; and if I biopsy the side of your head, probably will be negative for Androgenetic Alopecia." So.. *shrug* ? Ugh.

    Like you, DisTressing, I started with a lot of hair, and still have a lot on my head, but so far this has seemed to make docs more dismissive, though less so as it worsens, obviously. It's curly/wavy and so it's easier to hide the loss under a headband and look like nothing is wrong, but people who know me can see the difference now. It's good to know that a family history doesn't matter.

    Today, my bangs are just flying out of my head, falling all over my keyboard. It feels awful. Is there a recent thread about good sources of headbands, cotton hats, kerchiefs? I will check, and if not, maybe I'll start one. Whatever is wrong with me, be it Androgenetic Alopecia, CTE, both, or something else, I'm going to need to keep covering my head to feel okay. I'd love some kind of comfy head wrap that will keep me from seeing hair fall all day so I can focus on something else. But that looks pretty good (I could probs go for a retro modern-y wide headband, or bandana style kerchief...). Gonna research that.
     
  15. DisTressing

    DisTressing Established Member

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    Just a follow up - there is a specific method for doing a scalp biopsy to help distinguish CTE from Androgenetic Alopecia that has been shown to be more accurate than other methods, and it sounds like perhaps the dr. you spoke to has no knowledge of it -- according to Dr. Jeff Donovan, temple biopsies are notoriously inaccurate. I asked him this myself. I hope you look around in your area - whatever major metro city is most convenient, and locate someone with the expertise you need. Good luck!!
     
  16. hoping4best

    hoping4best Established Member

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    DisTressing, did you travel to talk with Dr Donovan, or did you have a remote consult? Apparently, they are only doing surgery in Toronto, and other assessments and treatments in Vancouver (according to their website). Vancouver is quite far (though finding an excuse to go to Vancouver wouldn't be the end of the world).

    I'm googling the better medical centers within two hours of me, for starters, and hopefully I will come up with some possibilities.
     
  17. DisTressing

    DisTressing Established Member

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    No, I communicated with him on Realself.com. It's a great way to interact with hair loss specialists and if you are lucky you might find someone who practices in your area. Dr. Donovan does offer Skype consultations, but they are fairly pricey, and I think it is best to have someone examine your scalp under a microscope in person.
     
  18. hoping4best

    hoping4best Established Member

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    Fellow hair loss-sufferers-in-the-computer, I got an appt in late July with this lady doctor, who is a trained pathologist and *only* treats hair loss! http://dianehoss.com/
    She doesn't take insurance, but her 1-hour consult price is affordable. It's a trek for me, but do-able.

    (Updated to add: 100 bonus points to Dr. Hoss b/c she herself answered the phone, booked my consult, and seemed very down-to-earth... so far, anyway.)

    I don't know if anyone has any experience with Dr. Hoss. I saw she's been at least mentioned on this forum before (I think she specializes in scalp pain? which I don't have). I feel scared and hopeful. I swear, another 10% of my remaining bangs fell out yesterday onto my keyboard. :( So I am freakin' motivated as all get-out. My hair is shedding at least 5-10 an hour, all day, and way more if I wash or comb and style it. It's just getting worse and worse. Ugh.

    I cannot thank you all enough for the support and encouragement. Maybe this won't solve my troubles, but at least I feel like I'm starting to figure out things to do that may be more helpful than seeing generic derms.
     
  19. DisTressing

    DisTressing Established Member

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    That is good news and good luck with the appointment! All the chronic high shedding for so long does not sound like Androgenetic Alopecia to me.
     
  20. hoping4best

    hoping4best Established Member

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    I am having a terrible week. I had almost-totally-bald triangles at my temples a while back, but they were growing back, now about 80% of what regrew on my temples has just fallen off in the last week. And a lot of my bangs (the shedding this week has been off the charts). And of course I have no idea why.

    It's been a week since I went to derm #2 (he wears a bow tie, so let's call him Dr. Bow Tie), and he still hasn't called me to order new blood work. I've called his office and asked him to get back to me. I feel stuck, and sad.

    When/if he does eventually return my call, I want to ask him to test my ferritin, my DHEA-S, zinc, B12, and cortisol (my testosterone and estrogen were recently tested and he has those results).

    I ordered a lot of head wraps.
     

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