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Kira's Story (Androgenetic Alopecia/cte?- Not Sure) Please Help Me

Discussion in 'Tell Your Story' started by KiRa, Aug 16, 2018.

  1. KiRa

    KiRa New Member

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    Hello Ladies:)

    i really do appreciate the conversation and support here in this forum.

    I don't know where to begin with my story.
    I will try to keep it short.
    I am 28 years old. My hair loss started 3 years ago, after I lost my father due to cancer.
    I was shedding a lot but never really paid attention to it because I had a lot of hair.
    I was sure that it would get better at some point. Well that has been not the case :(

    Then two years ago my hair dresser found a bald patch in the nape area. My Doctor thought it could be diffuse Alopecia Areata. result: no diffuse Alopecia Areata, it seemed to be more TE.
    The funny thing was that 2 weeks after my
    Biopsy the hair stared growing back in the bald area and only there.
    Is there a possibility that Inflammation in Alopecia Areata can only be seen in the active phase of Alopecia Areata?

    Even the biopsy suggested TE, the doctor than told me, just by looking to the top of my head, that it is Androgenetic Alopecia. I was really shocked and since then really depressed about my hair.

    Another dermatologist used a dermascopy and diagnosed me with TE.

    I have done so many blood tests. I also went to an Endo. hormones where fine, only ferritin ( 39)and vitamin d where low.


    So, I am no more vitamin d deficient and I also raised my ferritin levels to 72.

    I tried Mesotherapy, also PRP. Unfortunately it did not worked for me.

    I also tried Regaine for 8 month. It reduced a tiny bit the shedding but no regrowth.

    I am so confused. Really. Do I have TE or Androgenetic Alopecia/ DUPA? I am really freaking out.
    Some days i truely believe it is something else than Genetic. And some days I am sure that it is Androgenetic Alopecia but more DUPA since it is thinning all over.

    For me, i do have miniturized everywhere
    I am also shedding short/long thick/ thin hairs.
    I am crying every day because I lost my once thick curly hair.

    I am from Germany and the doctors here always telling me that if it's Androgenetic Alopecia, it will not affect your nape area.
    I really don't know what to believe.

    Here are some pictures :( this is all I have on my scalp
    please be honest. What do you think? More DUPA or something else? There is really no unaffected area left.
     

    Attached Files:

  2. KiRa

    KiRa New Member

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    Nobody?
     
  3. Ruth

    Ruth Established Member

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    Hi there,
    We Cannot tell you What kind of hairloss you have by looking at your pictures.

    But i understand a biopsy said TE? They did not see any minituarized follicles? Then I think you can assume it is TE.

    I have very mild Androgenetic Alopecia (maybe mixed with Cte) and I also have/had thinning and loss at the nape of the neck. Actually it is my worst hit area.
    So I don’t agree with what your docs say.
    You say you shedded a little less on rogaine. So then it was working. Usually you have to be on a treatment for at least a year before you can see if it really works for you.
     
  4. Peachtree

    Peachtree New Member

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  5. Medstudent2018

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    as a fellow diffused alopecian in her twenties, i feel your pain.
    your picture tells me that it really is as bad as it sounds.


    Are you on birth control? and what kind?
     
  6. Peachtree

    Peachtree New Member

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    Your hair loss appears to be very similar to mine. I started losing my hair when I was 23. I am 41. And it was like someone hit a light switch- one day it just started falling out. I’ve had multiple biopsies- no diagnosis. With both my pregnancies, my hair loss stopped basically right when i got pregnant and grew back. 3 months postpartum, my hair started falling out again. And the texture changed- the hair I have is dry, frizzy and basically dead. I have worn a hair topper every day for 3 years. Right now, i barely have any hair left, and will probably have to switch to a full wig soon. I have tried bioidentical progesterone cream- used it daily for a year and 1/2- no improvement whatsoever. I have horribly heavy periods(always have), my ferritin is 29(even with iron supplementation every day for 4 years). All thyroid levels “within normal range.” I have spent thousands and thousands of dollars on every supplement under the sun. Nothing has worked. I have seen rheumatology, endocrinology, homeopathic drs- honestly, when you are healthy overall and your condition is “hair loss”, no doctor I have found has given two shits. Seriously- listen for about a minute and send you out the door. It is so frustrating. I feel your pain every day.
     
  7. KiRa

    KiRa New Member

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    Thank you ladies for your response.:)


    Honestly, I don't know what to say. The most of the time I feel really hopeless and extreme depressed. I think we all feel the same way. It's a shame. I literally cannot find the right word to describe


    @ Ruth : I think you are right about the fact that Androgenetic Alopecia can also affect the nape area.

    Well to be honest I don't know whether there were looking for miniturized hair. The report says nothing about that. But I assume not.

    And also the dermatologist i saw, told me nothing about miniturized hair. She was sure that it is not genetic.


    I am really sceptical since I took pictures from my scalp and I am seeing a lot of hairs in different diameter.





    @Medstudent2018

    I am taking an anti-androgen birth control pill and had never issues.

    What do you mean by diffuse alopecian? Do you have a diagnosis?
    How you deal with it?:(


    @Peachtree


    I know exactly what you mean by saying that the doctors really don't care about your hair. This is a sad true. They underestimate the psychological aspect.

    But when you say that during pregnancy your hair came back, did your hair completely grew back? That would be in my opinion a clear indication that your hormones might be the cause. Did you ever checked your hormones during pregnancy? Would be maybe interesting to know.



    Interestingly also by the time I was loosing hair I did find out that i am extreme lactose intolerant. Since then I also have gut issues. But to be honest, never heard about the connection between hair loss and lactose Intolerance.


    I have in an appointment in a few weeks by the same dermatologist who habe me the diagnosis TE. At least she was the only one who where really nice to me. But know I am really sceptical about the diagnosis.

    Maybe I would need a another Biopsie but this time from the top of the head.

    I really want to know whether it's something reversible or not.
     
  8. Medstudent2018

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    You have diffused thinning, so all over the scalp. Your pill is hair-friendly so it most likely isnt the cause. You mentioned being lactose intolerant, maybe you need to test your ferritin levels again to see if they dropped and by how much. Being lactose-intolerant can cause problems with intestinal absorption (iron and calcium Etc.) https://www.foodintol.com/dairy-intolerance/lactose-intolerance Just to be sure, test your ferritin levels again if the last test was a couple of months ago. Your ferritin needs to be above 70 for atleast 3 months to see new regrowth. The downside: recovery will take 2/3 years
     
  9. Medstudent2018

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    By the way: a scalp biopsy doesnt say anything except maybe in cases of an auto immune disease like alopecia areata. Miniaturization is also a symptom in CTE. Are you losing hairstrands of differenr lengths and thickness?
     
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  10. KiRa

    KiRa New Member

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    Oh I thought that miniturized hair/ follicles occurs only in androgenetic alopecia.

    Yes i am loosing long thick and thin hairs as well as short thick and very thin, nearly noticeable hair.

    My ferritin: 72 , i did a blood test two weeks ago. I am taking iron suplements.

    And also my Calcium levels always been good because unfortunately I eat a lot of cheese and regret it afterwards

    I am so confused right now. I thought miniturized hair due to iron deficiency does not exist. Because the top of my scalp look really like androgenetic alopecia:(.
    Some of my friends are really iron deficient but they all have their hair.

    I don't know what to believe. I thought with a biopsy they can look for miniturize hair follicles. And if that is the case the diagnosis of androgenetic alopecia is made.

    Do you experience hair loss from iron deficiency?
     
  11. KiRa

    KiRa New Member

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    Sorry i meant nearly unnoticeable hair.
     
  12. Medstudent2018

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    I have diffuse thinning due to low ferritin. It took me 12 months with supplements to get it to 50. After the 45th mark, i noticed strands of different lenghts and thickness, some of the hairstrands on my head are sooooo thin and short (miniaturized) but after a couple of months i could see that some of it was being replaced by thicker hair. Have you noticed those different hair strands fall during iron supplementation? That means that your scalp is recovering, and slowly replacing those unhealthy hairs. Some people with pcos have hairloss and some dont, some people with iron deficiency have hairloss and others dont. Every human body reacts differently
     
    TinaM1968 likes this.
  13. electra

    electra Established Member

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    Hi Kira, so sorry to hear your pain. I think my hair looks exactly like yours...Not sure it's noticeable to others when I'm out, but if I lift up the back, or the side, of the hair, it's awful.

    I have lost hair in my nape, too, and I believe it's Alopecia Areata. But I'm 20 years older than you, going through hormone changes, so I'm still not sure exactly what it is...I've had diffuse thinning/falling out in addition to recession along my temples and front/scalp.

    It would seem that you hair loss is due to the trauma you suffered upon your father's death (therefore, TE). But I'd be surprised if it lasted three years...? Obviously it has, but maybe it's something else...

    Let us know how you're doing.
     
  14. KiRa

    KiRa New Member

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    Sorry ladies for the my late response.
    I tried to calm for a while and not to stress about my hair. Easy to say we all know

    @TinaM1968 and @elektra
    I went for the last time to a dermatologist. She where very very nice.
    She thinks there may be a genetic component but more TE more CTE.
    She where honest and told me that only time will tell. Not really happy about the answer.

    I should eliminate all possible factors that plays a role for my possible TE ( one factor is the ongoing depression and my iron levels-they are now high enough but I am struggling to keep the ferritin high)

    I don't know whether to give the hope that my hair will come back or at least some of them. Still no change :(
     
  15. Georgina

    Georgina Established Member

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    First things to look for are patterns.
    Hairline recession at the temples, loss on the top and vertex areas are all good indicators that it is Androgenetic Alopecia. I personally have recession of my entire hairline which includes temples, sides, behind ears, nape, and diffuse hairloss throughout. I have thinning of my eyebrows and eyelashes too. I got several biopsies. The first two said TE. The last one said Androgenetic Alopecia, and since I have some severe miniturisation and recession, I just went with Androgenetic Alopecia.
    I however went through menopause when I was 20-21 so Androgenetic Alopecia seems more likely. If all your hormones seem to be normal then you will need to do some digging. Does anyone else in your family have hairloss? Even if your father or grandparents do, you can carry those genetics. You could try out topical steroid creams to see if that helps in the case of it being alopecia incognita. Otherwise it could be something like an allergy.. people with gluten intolerance for example can have shedding and hair thinning. If you can’t seem to find an answer, you could consider using the oral version of minoxidil. I used that and it regrew all of my hair, but sadly it’s now caught up with me again because my shedding never stopped.

    I wish you luck
     
  16. KiRa

    KiRa New Member

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    Dear Georgina,

    thank you very much for your suggestions.
    And yes, I do have thinning on the top, the sides , on the vertex but also on the back of my head and behind the ears. There is no unaffected area. I do have thinning on my hairline but no recession, only thinning.

    My hormones are all fine. They even tested my DHT level and it was fine.
    And yes genetic hair loss runs in my family. Only men are affected. It seems that at the very end it is Androgenetic Alopecia, more DUPA. DUPA seems to be really bad.

    I am just hoping that there is something else going on.

    I also was tested for gluten intolerance. Nothing.

    The only factor was iron and my mental issues.

    Why do you think that oral minoxidil is better than the regular one for scalp?
    I have no idea whether my doctor here would prescribe me with oral minoxidil.
     
  17. Georgina

    Georgina Established Member

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    DUPA is really hard. Sounds a bit like that may be what you have if it’s not telogen effluvium.
    Only my father has hairloss in my family, and all of my siblings have perfect hair. Even my brother who is 32.. no hairloss at all. Sometimes you just get unlucky. I certainly drew the short straw.

    Oral minoxidil works MUCH better than the topical version. I only started on 1mg which was prescribed by my derm and it worked stupidly well, but came with some side effects like facial bloating and fatigue. You will get that with the topical version If you’re one of the types to get those side effects anyway. Justbe aware that it grows hair everywhere. So your eyebrows, eyelashes, body hair will grow thicker and darker too. It has been my only option as I have loss of brows and lashes also.
    You may like to try the topical version first to see how it works, but if you don’t respond to that, you will 100% respond to oral minoxidil. But it’s for life. Once you’re on, you can’t really ever stop taking it or the hair you grew plus about 5-10% will fall out. Same goes with topical minoxidil.
     
  18. KiRa

    KiRa New Member

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    Thank you very much for your information about oral minoxidil.
    I will discuss that with my derm.

    I wish it is not DUPA but after so many tests, at the very end it seems to be DUPA because my hair is in diameter thinner. I am really afraid of it.

    At the same when my hair loss started I do also had a tiny round bald spot but that regrew after a while.

    That is why it make sense to consider alopecia areata incognita since there is minituarization of hair too.

    And there is also a discussion about whether or not iron deficiency result in thinning of hair strands. I don't know what to believe.


    All doctors don't really know what's going. I wish I had a definitive diagnose.
     
  19. Georgina

    Georgina Established Member

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    You could try using a topical steroid lotion to see if it helps? If you have alopecia areata incognita, some clobetasol foam might really help.
     

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