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Do I have Alopecia Areata? I would love someone's input!

Discussion in 'Women's Alopecia Areata' started by Guest, Jul 30, 2006.

  1. Guest

    Guest Guest

    Hello! For the past year, I have had diffuse hair loss all over my head although it seems to have become most thinnest on top. I don't really have any patches where hair is missing but I would say I have lost 75% of my head hair and see little regrowth. Been to a hundred different endos, derms, specialists and no one knows the cause of my loss.
    Can I ask, what blood tests should be done that would confirm/rule out Alopecia Areata? I am asking because for a week now, I have been losing 6-8 eyelashes a day and a few eyebrows as well. I just don't think this is typical of Telogen Effluvium. I had two scalp biopsies done five months ago and one said possible alopecia (but they said any peribulbular inflammation was absent) so my derm said that it wasn't alopecia because they didn't find inflammation. The second scalp biopsy result said, "Possible TE or Androgenetic Alopecia". I wish they could give more concrete answers and just be more definitive!!
    What other things should I be doing to determine if I have TE, Androgenetic Alopecia or Alopecia Areata? My thyroid was normal, ferritin is at a 58, etc.

    I really, really appreciate the help! :roll:
     
  2. Joann

    Joann Moderator

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    Hi KJ,

    There are no blood tests which can confirm a diagnosis of Alopecia Areata especially if it is diffuse Alopecia Areata. They usually determine it by a scalp biopsy but in your case you've had 2 and have not gotten a definite answer.

    With Alopecia Areata there is no cure guaranteed to put the Alopecia Areata into remission only treatments to try to regrow the hair . So even someone who does get a firm diagnosis of Alopecia Areata doesn't necessarily have immediate success at regrowing their hair.

    I know how frustrating all this must be for you. Have you been prescribed any treatments to this point? Some people with Alopecia Areata do well on the 5% Rogaine .

    Thyroid & ferriten levels can cause a change in your hair but in my case being treated for both of these conditions in the past and even now for hypothyroid hasn't made any difference to my hair. In fact when I was diagnosed with hypothyroidism my Alopecia Areata was in remission .I have had Alopecia Areata since I was 4 but have had many years when it was in spontaneous remission.

    Take care. Joann
     
  3. Guest

    Guest Guest

    Hi Joann:
    Thank you so much for your response. This is such a depressing thing to have to battle and I continually wish that each morning I will just wake up and realize it has been a bad, bad nightmare. Right now, I do Rogaine 5% once a day and have noticed just a little bit of regrowth. But the shedding in large amounts continues and I wonder when it will ever stop. I cannot believe that you have had Alopecia Areata since you were 4 !! And here I am griping about having hair loss this past year! You said that sometimes you will have spontaneous remission; does your hair grow back in at that point? What treatments do you use for regrowth?
    Can I ask; have you also lost eyelashes/eyebrows as well and do they grow back on their own?
    I guess I don't understand Alopecia Areata... I hear it is an autoimmune disease, what does that mean exactly?
    Thanks for all your help and for the information. It is only through sites like these that I actually learn things (as opposed to from my doctors).
    Take good care Joann! Have a great week!
     
  4. Joann

    Joann Moderator

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    Hi again KJ, :)

    Here is a description of what Alopecia Areata is taken from the NAAF site:

    What is alopecia areata?

    Alopecia areata is a common autoimmune disease that results in the loss of hair on the scalp and elsewhere. It usually starts with one or more small, round, smooth patches. It occurs in males and females of all ages and races, but onset most often occurs in childhood. It is estimated that approximately two percent of the population will be affected at some point in their lives, or over 4.5 million people in the United States.

    In alopecia areata, the affected hair follicles are mistakenly attacked in groups by a person's own immune system (white blood cells), resulting in the arrest of the hair growth stage. These affected follicles become very small, drastically slow down production, and grow no hair visible above the surface for months or years. The scalp is the most commonly affected area, but the beard or any hair-bearing site can be affected alone or together with the scalp.

    Some people develop only a few bare patches that regrow hair within a year. In others, extensive patchy loss occurs, and in a few, all scalp hair is lost (referred to as alopecia totalis) or, hair is lost from the entire scalp and body (referred to as alopecia universalis). No matter how widespread the hair loss, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. In all cases, hair regrowth may occur even without treatment and even after many years.



    I lost nearly all my hair to Alopecia Areata at the age of 4 but it eventually grew back. I did continue to have bouts of Alopecia Areata through my child and teen years. After another major loss at 17 my hair eventually grew back again and then the Alopecia Areata went into remission on it's own until I was around 40. It started again and I spent the next 10 years doing treatments but unfortunately this last time the Alopecia Areata just got worse as time went on. By 50 my hair was all gone.

    I had the most success with cortisone injections. I would usually see regrowth in the area injected within a month of receiving the first injection. However with this last bout of Alopecia Areata I was growing hair back in one place and losing it in new place . I eventually had to give up on all treatments when my Alopecia Areata didn't go into spontaneous remission on it's own.

    I had never lost brows or lashes in all the years that my Alopecia Areata came and went but unfortunately after losing all my hair my brows were next to go then my eyelashes. I did get regrowth of my brows with cortisone injections but when the injections were discontinued they fell out again. I didn't want to do injections on my eyebrows indefinitely so I didn't have them done again.

    I want to add that when you are diagnosed at such a young age as I was you are more apt to go on to the more severe forms of AT & Alopecia Universalis. Many people who get Alopecia Areata later on in life regrow their hair and never have a problem again.

    I hope all this info helps. I would be glad to answer any other questions you many have. Good luck on your regrowth. All my best. Joann
     
  5. kjdenver

    kjdenver Guest

    Thanks for your reply Joann!

    Hi Joann:
    I really appreciate all the information and I think I understand what Alopecia Areata really is now. But it seems like there should be some kind of medication or treatment that should just trigger the normal hair production cycle. I guess that is on everyone's wish list. What's frustrating is that for the past year, I have really believed this was Telogen Effluvium (and that is what most doctors were saying) but now I am having the brow and eyelash loss too. Just when I felt like I couldn't get more depressed, I started losing hair in other places as well.

    Is there a listing or site where I could go to that you know of which lists the best dermatologists or endocrinologists to see for hair loss? I need to look beyond my state because the doctors have not been helpful here.

    You seem like you are an amazing and strong individual. I cannot believe that you have had bouts with this since the age of 4. Your encouragement and positive attitude is really appreciated and thank you for all the information!! have a great day!
    take good care.... KJ
     
  6. Karen

    Karen Guest

    KJ

    I seem to recall when my alopecia first started someone asked if I had a test for ANA's antinuclear antibodies). I don't think this test was done on me. I googled anti-nuclear antibodies and found this:

    Autoimmune diseases are conditions in which there is a disorder of the immune system characterized by the abnormal production of antibodies (auto-antibodies) directed against the tissues of the body. Autoimmune diseases typically feature inflammation of various tissues of the body. ANAs are found in patients with a number of different autoimmune diseases, such as systemic lupus erythematosus, Sjogren's syndrome, rheumatoid arthritis, polymyositis, scleroderma, Hashimoto's thyroiditis, juvenile diabetes mellitus, Addison disease , vitiligo, pernicious anemia, glomerulonephritis, and pulmonary fibrosis.

    Hmm, I never had any inflammation either and I know it was Alopecia Areata. Diffuse Alopecia Areata is possible but it is rare. I can imagine how aggravating it is not to have a diagnosis. Sorry I could not have been more help to you.
     
  7. kjdenver

    kjdenver Guest

    To Karen-- thanks for your reply

    Hi Karen:
    Thank you also for replying to my post. Can I ask... how did you know you had Alopecia Areata? Do you have specific hair loss in one place? How long have you had Alopecia Areata? Have you lost eyebrows, eyelashes?
    I don't think I have had an ANA test done. I will definitely have to ask for that and see what that test reveals! I just feel like everyday is such a struggle to try and understand what is going on with me, what can I take to make my hair grow back, etc. I feel like it is such an uphill battle. And it isn't helpful when no doctor can really give me any guidance or suggestions for treatment.

    Thank you for all the information... and have a great weekend!!
    KJ :)
     
  8. Karen

    Karen Guest

    You are so welcome KJ.

    My husband noticed a dime-sized patch last May 2005. I immediately went to my gp and we looked it up together. He wasn't knowledgeable in this area and referred me to a derm who diagnosed it after a scalp biopsy. I had a number of blood tests to rule out certain things. They all came back normal. By August, 2005 - I was in a wig. It happened that fast. My hair came out in droves, just everwhere. I mean as soon as I was diagnosed it was then I saw it on my pillow, on my floor, on my clothes, in the car. At first, my derm gave me a steroid cream called Cordran and also told me to use Rogaine. Then I came back six weeks later and we started the cortisone shots. The only time we skipped was back in October because by then I had lost 80-90% of my hair. I also used white iodine (it was recommended by a woman on the yahoo alopecia site). She said she used it for her daughter and it worked. My derm had never used this before. I did an internet search on it and found a doctor in India who uses it on his patients. I don't know if it was the iodine or Cordran or Rogaine - but I would say by January it was growing back. I ditched the wig this April and finished my last set of cortisone shots in June.

    I know it feels like an uphill battle. Actually, I could think of a few more profane words but won't. Ya just have to hang in there. I think I would find a dermatologist that fights this aggressively and works with you, KJ.

    Secondly, they say that stress is a trigger for Alopecia Areata. Watch your stress levels, start eating right, sleep more, relax.

    I hope this helps ya just a little. Hang in! I'll be praying for ya.
     
  9. kjdenver

    kjdenver Guest

    To Karen

    Hi Karen:
    Congratulations to you that your hair is all growing back! And you have ditched your wig.... what a great feeling that must be!! I am going to burn mine I think when I recover from this.... :)
    I have a few questions and hope you don't mind me asking but I feel like I learn more from these sites than I do my own doctors!! Do you have any idea what might have triggered your Alopecia Areata? Sounds like blood tests didn't reveal anything. Did you do cortisone shots monthly and were you using Rogaine 5% ? Finally, is white iodine something you apply topically or do you take orally? I have never ever heard of that before!

    I do need to find a dermatologist who is aggressive and will help me fight this. I have even seen the chair of the dermatology department at our local university who offered absolutely no help at all and basically just told me to accept my hair loss. It has been an incredibly frustrating and depressing road. But your story gives me hope and Joann's reply to me also is reassuring. I am trying so hard not to obsess about this and just go about things as normal but it is so hard not to stress over. If you don't mind me asking, are you on the west coast, midwest or east coast? I truly feel like I need to start traveling somewhere to see someone who is at least going to try and help me. I have seen almost every dermatologist in the Denver area and I think I feel worse after every visit to their office. It is amazing that some doctors can really be cold and uncaring.

    Once again, thank you for your response, Karen! And I am just thrilled for you that your hair is growing back. And I appreciate your prayers... I can use as many as I can get. :)
    Kirstie
     
  10. Karen

    Karen Guest

    Re: To Karen

    KJ

    That's why I am here KJ - so please feel free to ask away. God knows, I did the same thing. I'm still asking! Anyways, I used to think that stress played a part in this - but now I know for sure it was the trigger. And it wasn't just one big thing but a lot of life's little things happened and I think my body just couldn't take it. I sort of just existed from day to day without realizing that I had shut down. That's what I believed happened.

    I did the cortisone shots every six weeks. From May 2005 until June 2006 - and skipped only one month - that was October because the loss was just too much. The only thing Rogaine did for me was give me a hairy face. I didn't like it and wasn't faithful to it. What I did with the white iodine (not red as it stains) is put a little on a cotton ball and swipe. It tingled at first and the smell is awful. I did that in November and December. When I started seeing my hair grow I stopped. I couldn't tell you what put my alopecia into remission because of the things I was trying but I think the iodine had a major play in it.

    Hope this helps ya!
     
  11. Joann

    Joann Moderator

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    Hi Girls, :)

    It is possible to have Alopecia Areata and yet have a negative ANA test :shock: Frustrating I know.

    Diffuse Alopecia Areata is very hard to diagnose and if suspected as a cause of hairloss a scalp biopsy is done.

    Here is a description of the various forms that Alopecia Areata can take. It was written by Dr. Jerry Shapiro a top leading Alopecia Areata specialist in Canada. The last few lines describe diffuse alopecia areata.

    " One can classify alopecia areata based on extent of disease or pattern of hair loss.

    Alopecia areata usually refers to varying amounts of patchy hair loss to larger areas of little or no hair: this kind of hair loss generally takes place on the scalp, but any hair-bearing surface can be affected.

    In alopecia totalis, all the scalp hair on the scalp is lost, and the surface of the scalp becomes totally smooth.

    Alopecia universalis means loss of all hair on the head and body, including eyelashes, eyebrows, underarm hair, and pubic hair.

    Alopecia areata can also be classified by the pattern of hair loss.

    Circumscript type means localized patch of hair loss.

    Reticulated type means that is there is a net-like pattern of hair loss in which irregular areas without hair are interspersed with areas of hair on the scalp.

    Ophiasis comes from the Greek word serpent. It is a pattern of hair loss that covers the periphery of the scalp like a serpent forming a turban over the edges of the scalp. This type of hair loss is more difficult to treat and this area of the scalp is more sluggish to treatment.

    Diffuse form of alopecia areata means a form of incomplete hair loss affecting the whole scalp without distinct patches. This type can be difficult to diagnose and may require a biopsy.

    To help in the diagnosis of any type of alopecia areata, the dermatologist always looks for exclamation point hairs- broken off short hair that taper (get narrower) toward the scalp."

    Hope this info helps. :) Take care. Hugs. Joann
     
  12. hairremedy12

    hairremedy12 Guest

    Alopecia Areata Blood test confirmation

    I have read that Alopecia Areata is cause by the body's own immune system attacking the hair follicles. Would a low white blood count that is below normal range be an indicator that this is the cause of the hair loss?

    All other tests have been negative and I have gotten a different diagnosis from (3) dematologist- Alopecia androgenic, alopecia aureat and unknow or idiopathic alopecia.
    I am not certain since each derm has given me a different diagnosis and no treatment given as yet has worked.
     
  13. byardley0

    byardley0 Guest

    KJ

    We are in the same situation with our daughter who is 11 years old. She has lost almost 65% of her hair over the past 10 months. Diffuse hair loss. Everyday, there is so much hair shedding. I don't know what started this hair loss, obviously not stress, we suspect vaccination (Hepatitis A) or allergy shots, both are playing with the immune system. We have seen so many derms in the boston area and in Minneapolis. The derms really do not tell us much. They put her on iron tabs and her ferritin has gne up from 28 to 41 in 4 months. No biopsy done. It is so frustrating and depressing. I don't know how to handle this, if it had happened to me I would not have cared. Sorry for venting, I hope you do get better. Have you had any luck with alternate treatments? We are trying homeopathy, now acupuncture (again). Hope and pray something works.

    b
     
  14. meowchica

    meowchica Guest

    Joann,

    Thank you for those descriptions of Alopecia.

    Very helpful stuff :) I have a word for it now. Ophiasis. neat.
     

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