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Newly dx with diffuse alopecia areata & androgenic alopecia

Discussion in 'Newly Diagnosed Alopecians' started by notlikingthis, May 11, 2010.

  1. The last time I remember my hair being normal was October 2008. After that, the hair loss was so gradual, it took months before I could get over my denial and realize I had a problem. I didn't have insurance until this year, so I wasn't able to get into a dermatologist until this April. By the end of the month I was diagnosed with diffuse alopecia areata and androgenic alopecia. I'm not sure how much hair loss can be attributed to each cause, but I'm hoping less was caused by androgenic alopecia because I don't want to use Rogaine for the rest of my life. This is so ridiculous, I'm 25, I shouldn't be losing my hair! I wish I could go back two years and feel my normal hair just once. I've forgotten what it's like to have a full head of hair :(

    I haven't worn my hair down since before Christmas, the all over hair loss is very noticeable and the only way to cover it up is to carefully fix my hair. I have to apply Rogaine foam (which is better than the liquid!) in the morning and Olux-e (a steroid foam) at night. I have to apply the Rogaine very carefully or it will make my hair look greasy. The Olux-e is awful, no matter how I apply it, it makes my hair look like I haven't showered in a week. Thankfully, I only have to apply this one at night (for now). I hate applying it, though, because I'm very busy and usually don't get home until late and the last thing I want to do is take 10min to apply the foam and then wait 30min for it to dry so I can go to bed. It will be worth it if it works, but only time will tell. I'm so tired of this, I just want my hair back.

    I have found that Toppik and Couvre work REALLY well to cover the thinness. I apply Couvre (it stains the scalp the color of your hair) first and then shake on the Toppik fibers (keratin fibers that match your hair color) which cling to the hair to make it look fuller. It took a couple uses to figure out the best way to apply it, but now I have my confidence back. I hate having to use it, I'd rather have my real hair, but it's better than nothing. I can almost make myself believe I don't have a hair loss problem when I put it on. The company that makes these products have several other products that I'm contemplating.

    I was hoping I'd be diagnosed with hypothyroidism, or something easily treated/curable. I usually just tell people I have an autoimmune disease that causes hair loss and I don't even tell them I have alopecia areata unless they ask. I never mention androgenic alopecia, because that's the one known as female pattern baldness and it makes me feel ashamed...like it's my fault or something. I know its not, but I can't help feeling that way. I just imagine other people are thinking that.

    I haven't even told that many people...only a few women in my church, my immediate family, a friend, and my boyfriend. My boyfriend has been AMAZING through all of this. He has an autoimmune disease (and multiple other things) as well, so he understands. What are the odds of that! It's nice to be able to relate to someone I know about all this.

    My one fear is that I will never regrow all of my hair. I can't even imagine that...I need to believe I will.
  2. Nikoletta

    Nikoletta Guest

    Hi! :)

    Wow, i'm so sorry that you are going through all this and hair loss definitely SUCKS :thumbdown2:

    As women we never think we'd be losing hair right??

    I have a question for you, how were you diagnosed with diffuse alopecia areata?? It's really quite rare to take on a diffuse form. What is your patter of hair loss and how is your part?
  3. My dermatologist started with a blood test--CBC, TSH, ferritin, and some other labs I can't remember off the top of my head. Those came back negative for anything significant. She also did a hair pull test, examined, my scalp, and did a biopsy. I had 4 and 5 hairs coming out with each pull, which is characteristic of alopecia, and I have the exclamation point hairs. The biopsy provided the conclusive diagnosis of alopecia areata and androgenic alopecia.

    As for my hair loss pattern--I do not have patches. My hair has thinned all over my head, but there is slightly more thinning in the front, along the part, and in the back.

    The diffuse version is pretty rare. I have yet to find anyone posting on this site, or others, that has diffuse alopecia like mine. Plus I have the combo pack--two for one with the alopecia (areata and Androgenetic Alopecia).

    I'm newly diagnosed, so you'll have to excuse my cynicism. I mainly just want to complain right now and read other's complaints, which is weird because I'm actually a very optimistic person. This will pass when I get more used to my condition. Thanks for your condolences, though :)
  4. Lily

    Lily Senior Member

    Mar 26, 2005
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    I'm pretty sure I'll never regrow my hair, unless the stem cell research pops out a "cure" pretty soon. I now wear a clip-on topper and while I'm not over the moon about it, it's better than being stuck with my crappy thin, almost totally gray hair!
  5. sid78

    sid78 Guest

    Hi notlikingthis,

    I first started noticing my hair loss in my 20s too. Without diagnosis, I blamed extensions and chemical hair treatments and birth control. I used rogaine for women religiously for about a year but felt like it was costing me a lot of money with little or no result. I'll never know if it owuld have helped if I had kept it up. I also used the laser comb when that was the "next big thing" but didn't feel like it was worth the time.

    Finally a couple years ago I was diagnosed with diffuse androgenic alopecia. I too was hoping it was a thyroid or anemia issue - at least that I could treat.

    My ferritin was low but not anemic. My doctor had me start on a heavy daily dose of iron supplements per day. But I did get impatient and went back to hair extensions - I just felt that my insecurity about my horrible looking hair was holding me back in life so much that I'd be better off wearing extensions, or even a wig, if it got that bad.

    Now I'm 32 and I'm sick of the extensions and want to make a commitment to doing all the things I never really committed to for long enough - iron and extra strength rogaine, washing my scalp more often than I'd like to (I have dry hair that I have to flat iron straight and prefer to only wash 1-2x a week but know that's bad for the scalp), and I'm going to get a good haircut to start with - so that split ends and breakage don't interrupt any potential regrowth.

    I'm going to be photographing my progress every couple months so wish me luck. If it works, I'll let you know!
  6. RugBug

    RugBug Guest

    Good luck!!!!! fingers and toes crossed for you too!!


  7. rubydee

    rubydee Guest

    Hate to hear about your Alopecia Areata. I was diagnosed with Diffuse Alopecia Areata. Mine has thinned all over . It actually hurts to comb thru what is left because... there is no padding of hair...All flat to my head. I did not have any blood wk, lab wk etc. The derm just looked at my head and scalp and said I had Alopecia Areata ( at first ) then when he saw I had no eyebrows...they were penciled on...and I was wearing false eyelash's...no eyelash's either he said it was diffuse and maybe Univeralis... My hair never came out patchy, and i still don't understand how my hair thinned almost overnight. Several times during the cort inj and Rogaine treatment I noticed my hair seemed better and then ! Bam, I had a bad stomach ache and the nxt day...I had lost more hair but I never see any hair on pillows, hairbrush etc. Its weird! Do you notice that your hair seems to thin very quickly...
  8. Lost

    Lost Guest

    rubydee first off Hi and welcome!!! I'm not a pro at any of this but I really think you should have some lab work done to be sure there is not a underlying cause. Did you at least have a biopsy to confirm diffuse Alopecia Areata? It is very rare ...but I'm pretty sure it shows right up on a biopsy... take-care D.
  9. starshine

    starshine Guest

    I too was diagmosed with diffuse Alopecia Areata in March. My hair is also flat and feels like there is no padding. It seemed to happen suddenly. It is very difficult to style and always looks bad. I wear a pretty topper when I need to look nice but if this continues, I will need a full wig. Wnat treatments are you getting Rubydee? I don't know which is worse, the spots or diffuse thinning.

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