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Anyone have diffuse alopecia areata? Or long-term?

Discussion in 'Women's Alopecia Areata' started by courtdubx, Jun 14, 2014.

  1. courtdubx

    courtdubx New Member

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    Hi,
    I was recently diagnosed with "diffuse non scarring alopecia areata" after a scalp biopsy, and after two years of believing it was telogen effluvium. Honestly, I would be happier if it was TE. After the biopsy my derm was happy and said this is great news! (considering that is was not a scarring alopecia) but I'm now more depressed than before, and more confused. I never considered that the hair loss could be Alopecia Areata because I have no circular bald patches. I lose about 60-100 hairs per day all over my head. The hair grows back fairly quickly, and I have a head full of different length hair that Im not sure what to do with :$

    Ive been trying to eat healthy, eliminate gluten and dairy from my diet, and eliminate stress (which has been very difficult). However, the hair loss and regrowth cycle has been steady for two years.

    I was wondering if anyone has this type of Alopecia Areata? If so, what should I expect? Is this a progressive type or will it go into a "remission" like other types of Alopecia Areata sometimes do? If anyone has answers, or just stories they would be comforting to hear. Im trying to stay positive with this confusing and scary news!
     
  2. Linwt

    Linwt Established Member

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    Hi Courtdubx, I was just recently diagnosised with the same thing. I am still having issues with this ruling though, I just don't know. The treatments are so different if it were Androgenetic Alopecia as apposed to DAA.I have been losing like crazy, mine probably started before I noticed but I started having major shedding in August 2013, and it just hasn't stopped. I'm even pregnant right now and the shedding hasn't stopped. You can go onto my profile and check out my posts to find out more information. A bit of what I have: my head burns a bit, sometimes alot, seems warm to touch, I have tons of regrowth all the time too, but I just have all lengths all over, all lengths falling all the time, I lost anywhere from 75-200 a day. Biopsy done in March/14 after demanding that I did not have CTE as the derm kept telling me. I wash with Regenate DR every other day, and now putting on Phyto 4 formula for chronic hair loss and thinning, aswell as I use the igrow helmet every other day. I've not getting any better, if anything I'm worse. Deep down I feel as though it is Diffuse Androgenetic Alopecia, but I just don't know. I gather I will need rogaine no matter what to see if real regrowth is going to happen. The back of my head seems worse, the hairs comes out everywhere. I am 14 weeks pregnant and my hair isn't getting any better, shedding is still the same, no remission. There are a few others on this site with DAA aswell, perhaps they can answer any of your questions. Let me know if you do any treatments for this, I am unable to do anything until after delivery then I'm going hard into treatment. How old are you btw?
     
  3. LoosingItAll

    LoosingItAll Established Member

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    Linwt.... When is that baby due ???? Are you going to breast feed? xxxooxxoo Shannon ♥
     
  4. Linwt

    Linwt Established Member

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    Hi LoosingItAll ... Baby is due Dec 13/14, I will be breastfeeding, but we'll see how it goes. For my twins it was a bit of an issue and I only got one month in before I was told to stop, I couldn't keep up with the demand and only one breast seemed to work for me. I'm hoping that I'll be flowing good and have lots frozen too. Then move onto some treatments. I'm still waiting for a second derms opinion so that I can really have good thoughts about my choice of treatment. I will be off for a year on maternity leave so I'm hoping that I have everything sorted out because I already feel like crap all the time and I'm sure any medication isn't going to make that any better for me, it's been almost two years now of feeling generally unwell and I know that there is something deep down is wrong, just not coming up on blood work.
     
  5. ducksauce

    ducksauce Established Member

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    Lin… I too have that feeling that something just isn't right. :( My bloodwork all comes out ok, I have low normal testosterone, my thyroid is alright although I have super high antibodies. Low ferritin, low hemoglobin but not alarmingly so. I have no "pattern" to my hair loss, its all over, but mostly right at my hairline. I search my scalp for miniaturization and vellus hair but can't find any. My derm said TE, but I'm not convinced. I do have regrowth, but not enough to change my see through hair. Went and had my hair colored/cut today and my stylist agreed that it isn't Androgenetic Alopecia as my part isn't wider. Who knows.. I feel like this hair loss thing is up to us to figure out. My faith in Dr.'s lessens daily. I'm sorry your shed is still up. Mine is finally slowing down so I'm waiting for my hair to come back…. who knows if it ever will though.:(
     
  6. courtdubx

    courtdubx New Member

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    Linwt, Thank you for replying. I'm only 19 years. I also have a tingling burning sensation. But if you're saying you have new regrowth, i doubt it will be Androgenetic Alopecia. usually hair loss from this is permanent, maybe you can tell by the hairs that are growing in. If they are the same color and thickness then it is probably alopecia. Although I find the diffuse kind strange Im pretty confident with the diagnosis. Im not doing any treatment, because most of the reviews I've read say that once you stop treatment, hair starts falling out again. I don't want to get my hopes up that the alopecia has stopped for it only to return once i quit, and some of the side effects frighten me. For now I'm staying away from rogaine and steroid gel (clobetasol) that they gave me. Im eating an extremely clean diet with no gluten or dairy and trying to balance the acidity in my stomach. Ive that high stomach acid and atopy are some things that can exacerbate the hair loss. Ill update how the diet works, but I am hoping my hair will stop shedding naturally. I couldn't imagine going through this on top of pregnancy! I wish you luck and hope all goes well

    Ducksauce, have you had a scalp biopsy done? If you're still worried in the future that might give you some answers to whats going on. All my bloodwork came back normal for everything, too. For a while I thought it was definitely TE, but the only definite answer you can get is from the biopsy. I felt like something was wrong in my body too, still do. I guess the best thing to do is try to stay as healthy and happy as possible, even though thats easier said than done. I wish you luck!
     
  7. hairloss...

    hello everyone....:xmas: how is diffuse alopecia areata like? is the shedding worser than te?
     
  8. Linwt

    Linwt Established Member

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    Hi Courtdubx, I actually did a no gluten, no sugar, no caffeine, no alcohol, no dairy diet from Janary to almost the middle of April. I honestly wish I could say I pin pointed it, but it did nothing. I noticed perhaps I wasn't shedding as much, but I was also starting to use some new shampoos and the igrow. Going through this while pregnant is a bloody rollercoaster, I've lost myself, I've lost my will to love the things I used to, I've shut people out including family. I don't want to touch my hair or be outside, nor go jogging anymore as it hurts to bounce around with my hair tied up. It's not fun either way, I was told that any allergies I believe I may have have no tie to hair loss. I continue to think that I have thyroid and perhaps a mold issue as I have all the symptoms and my mother has hypothyroid. I wish you well, I hope you go into remission soon!Ducksauce: have you gotten a microcamera for your scalp to check it out?

    - - - Updated - - -

    Ok, still having spacing issues ... Just can not get it to do what I want and it all get's bumbled together, sorry ladies.
     
  9. starshine

    starshine Guest

    Hi Courtdubx: I also have diffuse Alopecia Areata, confirmed by biopsy. The diffuse pattern is difficult to differentiate from TE which is why a biopsy is a good idea. Mine has been slowly thinning for about two years now. I started on Methotrexate which seemed to slow the shedding, but has not significantly brought back the hair I lost. I have had to cut it from waist length to above the shoulder because it was so stringy and see-through. My derm said that with diffuse, you usually will not lose all your hair, but it is a difficult, stubborn pattern that seems to resist treatments. Everyone is different though and there is always hope for remission, no matter what pattern you have. My blood work also came back fine except for an initial bout with anemia, but that is fine now--not so much the hair though. Stay positive and continue eating a clean, healthy diet.
     
  10. LoosingItAll

    LoosingItAll Established Member

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    I go Thursday to get my test results on my thyroid . I have all of the signs of hypothryroid . All my hormone levels are fine and so is my iron But my periods have been off for 6 months , I suddenly gained almost 30 lbs for no reason. I get hot, then cold and then hot again. And now my hair just went through a massive shed in less than 3 months I lost 50 % of my once very thick hair. It is diffuse , Derm said chronic TE but I may go have a biopsy done. Will it leave a scar? and will my hair not grow back there ever again ?
     
  11. Linwt

    Linwt Established Member

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    Hi Loosing it all, Have you considered speaking with a naturalpath? I have all normal levels too, but my naturalpath believes I have an unlaying issues with thyroid, and perhaps Adrenal Fatigue.You shouldn't not have gained 30lbs for no reason. I also have flashes, for 7 years now, I'm only 32, I wake up each night in a pool of sweat. How is your leg hair? I shave about three times a year. But my hormones and all blood work are supposedly fine too. Hmmmmmm ... Yah, I don't think so. A lady at work in doing hormone replacement therapy and she feels like a million bucks ... but she's 50.
     
  12. ducksauce

    ducksauce Established Member

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    So… like most of us, I research the heck out of female hair loss. A few things I've discovered.
    Iodine levels. Lack of iodine can cause thyroid problems. Sea salt/himalayan salt does not have any. I have been using non-iodied salt for a while, so I've switched back.

    Lack of stomach acid can… if you aren't digesting your food properly you aren't getting all the nutrients.

    Low testosterone levels.

    Low aromatase levels

    If you have well water look into… mercury, lead, arsenic, iron, copper, manganese, radon. All of which can be found in well water and can cause hair loss.

    Vitiligo (which I have. :( )

    Reduced Melatonin production.

    These are just a few of my recent discoveries… I just feel like Dr.'s are way too quick to say Androgenetic Alopecia and walk away after recommending minoxidil.

    There's just so much we can look into to take charge of our own health, I wish Dr's were more open minded.
     
  13. Linwt

    Linwt Established Member

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    I see my doctor on Friday and I don't even want to bring it up anymore, I just am told that's what I have, it's definative. But then my last appointment did not agree with the diagnosis and was calling for second opinions. Which I'm sure I will not get. No doctor wants to deal with it. I have digestive issues, have for years, I have no libido, like none, and with all this, my doctor finally said, what you have no leg hair? Why didn't you tell me? WHAT? I did, years ago aswell as having night sweats and I was told that that's normal. So now I have noticable hair loss, and that's normal too? I'm sick of fighting this, nothing is working. I read up on idodine yesterday and was given some to take by my naturalpath a few months ago but taste terrible. I am also trying to cut out the bad thyroid foods, broccoli, kale, spinach, strawberries, peanuts - This is literally my daily intake, I have a kale, strawberry, spinach smoothie every morning!!!! MAN! I think when it comes to hair loss and even if something is causing you to thin, Drs assume that you have a gene in you that is making it happen faster, so if you were to get thyroid and you already have it in you that you were going to thin later in life than ****ty deal, you'll lose lots more than the average person who has thyroid. I think I'm going to move out of my home for two months though to see. LOL ... Why not, I've tried everything else.
     
  14. ducksauce

    ducksauce Established Member

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    I hear you Lin… I've given up on Dr's for now, and I'm trying as many things as possible on my own. I live in a very small, rural town… and I've started to notice that almost all the women have thin or thinning hair… so do many of the little girls (prepuberty including my own 8 year old daughter) Our town is 100% well water. The ladies that have nice hair have water filtration systems. Next week we are having a filtration system installed. My hair loss makes me miserable, but I'm 40, I can deal. Looking at my 8 year old daughters head, and watching her part widen, and lengthen, and now her hairline right above her forehead is thinning is upsetting.
     
  15. LoosingItAll

    LoosingItAll Established Member

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    Hi Linwt... Yes I have thought about a naturalpath. but they do not take health insurance and I finally got health insurance June 1 2014 . My leg hair and under arm hair use to need to be shaved every 3 days, now it's more like every 2 weeks. My periods have been messed up since January. Last time I started was May 5 th and I know I am not pregnant. I go tomorrow to get my thyroid results and to have a pap smear. I use to be cold all the time, Now Im hot most of the time at night . I don't think our standard blood work goes into enough detail for a proper diagnosis until it's progressed to far along. And I don't think the Dr.'s pay to much attention to our symptoms and our suggestions when they don't show up on blood work :( I just want to yell at someone to LISTEN to me !!!
     
  16. Linwt

    Linwt Established Member

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    Yah, I remember you talking about the water issues a while ago. Good for you for getting a filtration system in place, my husband put one in a while ago when all this started, and now I'm looking into a house air filtration too. If I'm still there by that time. I have a hard time looking at peoples eyes now knowing all this hair nonesense ... I want to be me again and know nothing about hair loss :)

    - - - Updated - - -

    I didn't realize you have Vitiligo ... Upon my hair shedding journey, I developed a fungal rash on my chest, called tinea versicolor, it comes and goes. And then more recently in March I developed some rashes down below, which I haven't figured out yet.

    - - - Updated - - -

    Oh and I have over the years began having more birth marks. I started with one at birth and now I have about 7 or 8. Just regular old birth marks a few shades darker then my skin color.
     
  17. ducksauce

    ducksauce Established Member

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    Loosing it all… I have found that it helps to ask for a copy of all your blood work. Through that I have discovered that I have low/normal testosterone, my ferritin is actually falling, it was 60 in August and dropped to 40 by November. I learned that my hemoglobin is very low/normal and I need to be worried about clotting issues because I have low MVP. I have super high thyroid antibodies, but my thyroid levels are ok. I have a few other things that are on the low end of normal. What I learned is that on a lab report they bold out any high/low results but other than that nothing so if you're low/normal the Dr. won't even notice. Crappy way to practice medicine. I totally understand about wanting a Dr. to listen to you.
     
  18. Linwt

    Linwt Established Member

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    I do this too, upon leaving the dr's office I ask the receptionist for a copy of my blood work. Everytime there is something highlighted that I'm not told about! Not joking, every single time, I have found something and was not told about it. Except once when I had the B12 levels of a 95 year old. Then I was told to just take a supplement. Which didn't work. I love my naturalpath, I pay but I get what I pay for.
     
  19. LoosingItAll

    LoosingItAll Established Member

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    I do have copies of all my blood work, and there are some things on the low end, some are on the high end. So after tomorrows visit to pick up my test result, Im going to as for a referral to a blood specialist ./ Hormone Dr. I'm tired of the games. B12 levels that low would require shots once or twice a week. B12 is so hard to obsorbe . They now make spray's that you spray under your tounge to go directly into your blood stream . I'll let you all know what they tell me tomorrow :/
     
  20. Linwt

    Linwt Established Member

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    Oh I'm all good, I have to take an under the tongue supplement, I've gotten it up but if I fail to miss a couple of days I drop drastically. Thanks :)
     

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