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Symptoms of diffuse alopecia areata?

Discussion in 'The Undiagnosed' started by Paulina, Apr 9, 2010.

  1. Paulina

    Paulina Guest

    Hi Hcrazy,

    I am so sorry you went through mold sickness too! It is unbelievable how many people are sick from this stuff and losing their hair from it. I am so glad you are better now...though I do know the hair loss is so devastating. So ya...two years out and hair not grown back yet? My daughter and I are out a year and a half and no luck either. We are trying to use the infrared sauna and hope that helps...if there are still mycotoxins in our bodies...or something else that is inside us causing this...I kinda really want them OUT. Don't know if it will help, will keep you posted. Hope you will keep me posted too. A lot of the anxiety in this is not knowing what will happen...either way. Thanks so much for sharing your story. I wonder how many women on this very site are actually experiencing hair loss for the same reason we did but just don't know it? Be blessed and adding you to my prayer list too!! We will ALL re-grow our hair and be well again. This I know. :) Let's share our stories and our progress and support one another in this. :)

    I was wondering if you could share something...only if you are comfortable...how much hair have you lost...if you had to approximate? And was there an unusual pattern to it? Does any seem to regrow at all? I am asking out of my own curiosity. As you have probably read, I have lost most of my hair at this point...but it is in a diffuse pattern. The other strange thing both myself and my other "soul sister" in this mold sickness thing have is that we seem to be losing more hair on the left side of our head. Strange right? I am also losing hair on other parts of my body...about 2/3 of my eyelashes have fallen out (watching them fall out right before his eyes is what convinced one of my doctors something was really wrong), I have lost the outer 1/4 of my eyebrows...both eyelashes and eyebrows rather dramatically thinned diffusely. My arms used to be so hairy it would be embarrassing and I would use a cream hair remover or wax the hair off. Now the hair is almost totally gone on both arms...but the left arm is worse that the right arm. My daughter has her eyelashes but some of her eyebrows have come out. She has not lost more hair of the left side of her body than the right but she has lost leg hair. She used to have the hairiest legs in town for an 8 year old. Now she is 11 and has almost none. Some might say..ohh...lucky her! But NO! Not lucky her! Something inside her body is very wrong and causing her scalp hair not to grow also. NOT good at all.

    So, how much hair have you lost and is there an unusual pattern? Our hair loss..my daughter and I...seems to be worse just above and behind the ears...though it is all over. Also, have you or anyone else experienced hair loss in other parts of your body? Just curious I guess.

    I did have a scalp biopsy and do not have alopecia areata of any kind nor do I have Androgenetic Alopecia...was diagnosed with a chronic telogen effluvium of unknown etiology (cause). Not exactly unknown to us right? Big sigh. Anyway, share only if you want. Have a wonderful day sweetie.
  2. Din

    Din Established Member

    Apr 10, 2011
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    I have a question for you,

    I too suffer hair loss. It started when I got off BCP, lasted for about 10 months, then I got a fever and a month later shedding again. It is three and a halfmonths of the second TE already. I am also losing lashes and brows... and have since TE first hit.

    I have a cat who is very sick. he usually stays in the basement because he cannot come up. So in the past two years, I had to keep his food and water bowl beside him.

    Last year, he spilled water on the carpet and I did notice that there was green mold on the carpet. I just went down stairs now...I cut away that piece and trashed it. I will buy a carpet later to place it on top of the hole I made. Do you think that that green mold from the water spilling is the mold you are talking about? No one in my family suffers from hair loss, only me, so perhaps it is not related? regardless, I cut away that piece and trashed it. All that mold talk is making me scared now,
    thanks for any advice,

  3. hcrazy

    hcrazy Guest

    My hair is still pouring out of my head! I wish it was better. I know the mold was extremely unhealthy for me...but I have something else going on...or maybe it helped trigger other things. I still live in a house we have owned for nine years...that I have to control the environment. It is the original "start" of my mold allergies...although we have done alot to fix...still not perfect. The house on the beach was the ultimate torture for that though!

    I have lost 50-60% of my hair! It is trying to grow back...but my worst loss was recent due to a ferritin misdiagnosis and them giving me an iron overload. That gave me bald spots and an almost two inch part in the back! It is worse on sides, temple and crown. My right is worse then my left. My biopsy also showed Chronic Telogen Effluvium and that I was "supposed" to be recovering. That was in January. I haven't needed supplemental hair untill the last iron bit. Now I definatly need it!

    I also have lost alot of eyebrows and eyelashes. The problem with this is alot of other hair issue's do the same thing.
  4. Paulina

    Paulina Guest

    Oh honey, I am so sorry your hair is still coming out so much. I know how very hard this is. Truly I do. I am close to needing supplemental hair too and it is so hurtful and scary and embarrassing and just devastating all around. That really is awful about the ferratin test mishap (doctors! HMPF!! Don't get me started) but the good news is all that hair WILL grow back honey. It will. It may take a little time but if you are needing supplemental hair, it won't be permanent. The thing is that you need to be sure your environnment you are living in right now is ok and healthy and I know you did a lot to remediate the prior problem there (you mentioned mold sensitivities started there) but you kind of need to be sure the spore counts are at normal levels so you can stay healthy and re-grow the hair that has been lost. You need to get an air test there too. It is not only possible but likely that the air is just fine and you all did a great job remediating things there and that the hair loss is from this ferratin mishap. It cannot hurt to have the air tested just to be sure and to cover all bases but also if there were any possible silver lining in all of this, I would tell you that there is a really really good chance your environment is just fine and the loss is from the ferratin mishap alone and therefore your hair will be regrowing soon. I think you have every reason to be very hopeful. There are really great hair replacement options out there for us and people will not know it is not our hair. And it will only be temporary as well. Now temporary can mean a year or two for someone like me....but could mean a lot less time for someone like you. I want you to be very hopeful that you will have a great resolution faster than any of us now that your ferratin levels are normalizing and that has been discovered. Please, please don't be embarrassed to get TEMPORARY hair solutions and please take heart and know that you have every reason to know that your hair WILL grow back eventually. :) I hope you will keep me posted on how you are doing sweetheart. I hope you get the air tested just to be sure you cover all bases, but I really believe that even though things are bad and getting worse...they will get much better over time. Until then, know that I understand completely how you feel....how utterly defeating and devastating this can be...the self esteem issues and embarrassment issues, the insecurities and fears... and all that goes along with it. You are not alone in this though it may feel like it. Please message me and let me know how things go and any time you need some encouragement or to just vent. Sending you hope and hugs sweetheart. I am praying for us all. XOXO
  5. hcrazy

    hcrazy Guest

    Thanks Paulina!

    Same to you and your precious little girl. What a horrible experience!
    I know this sounds funny...but next time purchasing or renting a house I definatly know what to look for! :)
  6. emrob0

    emrob0 Guest

    Hi Paulina/All

    I am hoping that if this is all due to a mould problem, it is a fairly isolated one due to the leak we had rather than a widespread mouldy house. We will not know until we get the further tests done. We don't know either how long the leak had been present. The specialist I spoke to actually said we live in a high Aspergillus area (lots of fields etc) so high levels could just be normal for our dwelling, but I presume he will test different parts of our house to see whether spore levels in the play room are higher than the rest of the house? I know Aspergillus is found in all houses, it's just whether we have become sensitised I suppose or levels are particularly high? I love my home so if a problem is detected I hope it it something we can remedy. I will throw away whatever! In the meantime we have bought a decent vac with HEPA filter, and have put the playroom out of use with the doors closed all the time and a dehumidifier in there.
    In my first post I hope I did not sound derogatory towards the man that is helping and providing further testing with this. My anger is vented towards the dermatologist/GPs I have seen who refused to acknowledge a family link. This man is genuinely trying to help us by doing more invasive testing. He is a renouned expert in mycology so it is incredibly good of him to spare us his personal time. It is not that he was totally dismissive of the link...just that he has never come across it....but is willing to investigate further. He is used to dealing with incredibly sick people with Aspergilliosis etc and to be honest I did not even mention my other symptoms to him as I just want to take each step at a time and get some further testing on our home first. He did mention getting antibody /allergy testing done depending what he finds. I did not even consider mould as a cause until April when we got the initial testing done...so things are moving reasonibly quickly. Of all the health professionals I have seen he has so far been the most helpful, and I am incredibly grateful. I am interested to see if I feel any better next week when we are away. I cannot say I feel miraculously better when I'm away from the house for the day...which I think is typical of sick building syndrome.
    Our hair loss is diffuse, with massive thinning. Some areas are worse e.g temples but I think that these areas were always the thinnest anyway-it's just a lot more noticeable after such massive hair loss. I am still shedding vast amounts, though this morning the girls only lost around 20 hairs each when I combed gently. I have no idea what they lost previously as I never paid attention before all this! I went through a period in Jan/Feb where my hair loss slowed a lot and i had visible regrowth. I think I got excited prematurely, and thought it was over. Unfortunately it wasn't to last and I started losing massively again in March. I do see some regrowth again now but not nearly enough to keep up with the loss and thinning. I did see a trichologist months ago who said initial regrowth is often sickly (intermediate hair) and can all fall out, but be followed by thicker terminal hairs. He said the hair cycle can have a few false starts before it rights itself but I just don't know anymore! A few of the new hairs now do seem thicker and more pigmented but I lose an awful lot of short (new) hairs as well as long. My nails have also gone off terribly now though and are soft with rigdes.
    I just wish we had a reason-it is not having a reason I find so hard. If the reason is mould then we will deal with it however we need to. My husband is also still v suspicious of the carpet cleaning we had done in July, when we think back we are sure our scalps began to itch shortly after. I also sent my hair for hair analysis, and the company said they were almost certain these chemicals were the cause. Who knows? Anyway, we got rid of the carpets in April so if it ever was a cause, we are no longer being exposed to those toxins. Now we need to investigate the mould link.....
    Anyway please take care all, will inform if any news, especially on the Aspergillus front.xxx
  7. emrob0

    emrob0 Guest

    Just a quick update, have had further mould/spore level tests done this morning. Results back within a week. Have now started to rid the room of carpet/tiles underneath etc (some nasty spores growing underneath). HEPA vacuming the house like crazy too. I am now arming myself with as much knowledge as possible...if results do come back high...I need to know what further tests/treatment we will need to hopefully prove a possible association to the hair loss. I need properly medically referenced stuff really. Feeling a bit more confident this is hopefully an isolated mould problem although think it will take a lot of effort to remediate. The doctor that came out has visited hundreds of mouldy/damp homes, and said ours does not seem to be a widespread mouldy house due to absence of odours/visible mould/excessive dust etc.
  8. posesmom

    posesmom Guest

    Hi I was recently (last month) diagnosed with diffuse Alopecia Areata. My hair shedding started almost 10 years ago in my early 20's, I am now 31 & comes & goes in cycles. I don't have a burning sensation, it reminds me more of a goosebump sensation across my scalp. Sort of tingly, & I become hyper aware of it. I was shedding a lot of hair each day, but the past few weeks it's not as much. However I now have a lot of baldness I have to try & cover. It's mainly long hairs, I don't know much about terminology yet but they usually have this pitiful tiny little black dot that's supposed to be the root. Also lately I notice they all have about an inch or two that is so much thinner than the rest of the hair. The local derm in my area that treated my first bald spot in 2008 took one look at my hairline & crown & told me it was female pattern hairloss & that surgery would fix it. It infuriated me because he didn't want to test me for anything. I had to demand my hormone levels be checked. All my bloodwork has come back within normal ranges, even though last month my vitamin d & iron levels were just under the normal. Not severe enough to cause hair loss but apparently it might hinder regrowth so I started a supplement for both. I found a doctor in Charlotte who did a biopsy of 2 seperate places & it came back diffuse Alopecia Areata. He also used the words surprised, rare, has only seen a couple of cases. I have very course hair, something I always disliked & now am so thankful for that fact because even now I can hide most of my thinning with ponytails. If my treatments don't reverse it that won't be for too much longer though I'm pretty sure. I have definitely had complete reversal during my pregnancies. But as soon as I wean my babies it comes back with a vengeance. I guess I'm prepared for the worst, I have my woe is me moments but in the end I'm prepared to wear the best looking wig I can find. You're case sounds so much like mine, I have ridges in my nails too. My hairloss is a lot at the hairline & back crown. Actually the middle back of my head has lost a lot recently, if I lift up my top hair it scares me to see just how bad it is. I try not to do that too often. Anyway, thanks for letting me ramble, it does make me feel less alone to talk to other women on here...even though I wouldn't wish this on a soul.
  9. Paulina

    Paulina Guest

    Hi Posesmom,

    Thank you so much for sharing your story. We are all in the same "boat" so to speak here and myself and all of us really do know how extremely difficult this is for you. My dermotologist (one of them) thought I had diffuse Alopecia Areata too and also said it was rare. You are right I did and still do have those ridges in my nails and loss of eyebrow hair, arm hair, most of my eyelashes gone...etc. I was SURE I had the diffuse Alopecia Areata but I had a biopsy done as well that showed no sign of Alopecia Areata at all, only mild Androgenetic Alopecia and severe chronic Telogen Effluvium of unknown etiology...that means cause. My hair loss is so bad that an entire panel of pathologists reviewed it and all agreed. So while I have not lost hair for the same reason, I have lost almost all of it at this point so I can empathize...truly I can. I was told that with diffuse Alopecia Areata the hair grows back almost all of the time. You have had this a while now....where it has come out and grown in again...pregnancy related perhaps?...does your doctor feel it will grow back again (without pregnancies of course)? I do not have any bald spots at all...the thinning is pretty much totally even except it is a bit worse above and behind my ear...but I am also resigned to the fact that I will be in a wig. I have already researched it and have lots of info on it. I have learned accepting what is inevitable for me has decreased my anxiety over it. Sometimes I want to shave my head and just wear the damned wig already so I don't have to worry about it happening anymore. Sometimes worrying about something is worse than it actually happening. I am hoping that is true in this case because at this point, even if my hair started regrowing tomorrow, it is too late. Hair only grows so fast and I have very very little left and it is still coming out a lot. So, whoever said you do not lose ALL your hair from Telogen Effluvium can never say that ever again. Is happening to me. BTW, I have had my thyroid checked, my pituitary checked, my edocrine system checked, PCOS checked, Lupus checked, all ferratin, B12, etc checked. I also was low in Vitamin D but also told that it was not enough to cause hair loss. Strange thing is, I was on high dose supplements for many months and no change in Vit D levels? Don't know what to make of that one. Thanks again for sharing your story...I really hope and pray your hair grows back again soon! Also, after a pregnancy it is normal to lose a lot of hair so maybe that is something in addition to the diffuse Alopecia Areata, not the diffuse Alopecia Areata itself? I know the extra estrogen keeps hair in anagen phase much longer and that is why you get thicker hair when in pregnancy and why the hair falls when pregnancies are done and estrogen / hormone levels return to normal. Sending you a big hug and praying your hair grows back very soon!!
  10. emrob0

    emrob0 Guest

    Hi Paulina
    I was just wondering, is your daughter losing hair & how much does she lose on a daily basis? What do you think "normal" hair loss for a child should be? My girls don't lose anything like I do fingers crossed (I am 100-200 hairs per day at the moment :( )...but I still find hair all over their clothing/bedding etc
  11. emrob0

    emrob0 Guest

    For all of you who think/know your hair loss was due to mould exposure have any of you received treatment? I found the post below on another hair loss site and am wondering if I should push to get treatment for my family? Would really appreciate any responses...thanks.

    [i"My entire family began suffering from hair loss about 4 years ago. Through many trials, we discovered that our problem was related to mold/fungal exposure. We had a blood panels which tested for mold antibodies and our results revealed high positve antibodies for several toxic molds. We do not know where we were exposed because our home was tested by an environmental firm and no toxic levels of mold were detected.

    Through a mold free diet and anti fungal medication we have stopped losing hair. The regrowth has been slow but we are hopeful. We use an anti fungal spray in delivered through the nasal passages and the results have been very positive. Antifungals applied to the scalp were also significant in stopping the hair loss.

    By the way, we did have other symptoms but our hair loss was the most disconcerting. We have seen marked improvement in these areas as well"[/i]
  12. karenj

    karenj Guest

    Paulina! I don't even know where to start and i am so happy that i came across this website. Almost 2 years ago I started working in an office that was filled with toxic mold, and the first symptom I experienced was hair loss. I didn't see the correlation at the time until the office had some severe water leaks, my hair loss got even worse (this was June of last year), and I developed some of the most insane and worst symptoms imaginable. Ever since then I have been dealing with dizziness, feelings of unreality/space or foggy feeling 24/7, feeling off balance, speaking and memory problems, etc. At the same time we also happened to move into a house which has mold issues as well :( I ended up quitting my job because I just couldn't handle it, not realizing that my house had toxic mold in it as well, and ended up getting so much worse from just being exposed to both of those environments so much. It has honestly been the worst year of my entire life. I have gone to so many doctors to try and resolve this problem, and have had absolutely no success, and partially probably because of the fact that I'm living in a moldy house. I'm from New York but I'm actually in California for the next week, and have been here since last Tuesday, to get away from my house and to see if there are ANY improvements in any of my symptoms. It's been a full week and at this point I don't feel much of a change but I'm trying to be hopeful. The only thing I do feel is a lot more energy, which I guess is atleast a good sign. It's so devastating, and I've never been in more debt just trying to survive and get better. I've spent a fortune on doctors and medical treatments, and have gotten absolutely nowhere. I can't even consider getting a job because of how awful I feel. I just started something called Cholestyramine, was wondering if you were familiar with it at all, and if that's something that helped you with all of your other symptoms (aside from the hair loss which I know persisted even after that). I'm a little worried that it could be contributing to my hair loss since it may make me more toxic, but I know that it will hopefully get rid of some of the mycotoxins, which I'm really hoping will resolve some of these issues. I've lost SO much hair in the past two years, I used to have gorgeous thick hair and now I'm at a point where I'm considering wigs :( I'm 25.. and I never imagined that I would ever be in this position, and newly single, so this has been unbelievably tough for me. Hearing your story has been amazing for me, because it not only confirms my case, and how dangerous mold is, but it is nice to know that there is someone out there who truly understands. I was also wondering if you've tried any natural supplements for your hair loss? coconut oil (and amla oil) is supposed to be fantastic for both loss and growth, but I feel like at this point I've lost so much hair that putting so much oil almost pulls at my hair and i'm a little nervous to apply it... I wish had tried either of those a lot sooner. Have you tried any hair growth pills or any other remedies at all? I'm on one natural supplement, which I do think may help somewhat, but who knows. I really hope to hear from you soon, and i would love to speak with you - you can email me directly at kayjs902@yahoo.com also if that's easier (i'm not on here very often). i hope you're doing well, and hope your situation is better also, you seem like such a strong and beautiful person! best wishes. xo
  13. Paulina

    Paulina Guest

    Dearest KarenJ,
    Please let me say that I am so sorry for what has happened to you. Yes, I truly DO understand all that you have been through and are still going through....and so do some others on this thread honey. I have come to know so many women who have been exposed to toxic mold and lost their hair and gotten very sick, yet very few doctors seem to know anything about this or how to treat it. How is this possible? It is really dumbfounding and makes you wonder what the heck is going on about that? I am glad you are on the Cholestyramine. I hear that can really help. I wish I could say I tried it, but I don't know how to get it...I would if I could! Did your doctor prescribe it? Please keep us posted as to how that works for you. As for your symptoms...what you had is called "brain fog" and I had it too...pretty badly. I was in the Emergency Room at one point...the doctor asked me what day it was...I truly had no idea! I had to really think about it for a minute or two....try to think of days past and when the weekend was...I took a while! I could tell him exactly who the President was and what year it was....but what day was it? What did I have for dinner the night before? I had to really think about it to figure it out! Short term memory loss, confusion, off balance, it is kind of like living in a non stop semi-drugged state. I also had a bunch of other horrible symptoms, so did my daughter. She actually had it much worse then I did. :( I have to tell you that I am a pretty strong woman, but so are YOU and all the other women on this thread! I have come to know so many incredible women and I am so happy to have seen your post! Now I can count you among us! :) I will email you at your personal email since you are not at this site often and I am glad you found this thread! I am happy to encourage you and lift you up until your hair regrows again...and I KNOW it will! Sending you a HUGE hug and wishing you a really hopeful, joyful day!! Will email later today. XOXOXOXO
  14. emrob0

    emrob0 Guest

    Dear karenj
    I too have been corresponding with Paulina & she has been a great help. Having cleaned up our mould problem I am now on some anti fungal meds. Too early to say if these are having any effect, in fact I still feel awful at times but some people speak of mould "die off" symptoms which can make you feel quite unwell as the toxins leave your body. Hoping it might be this. Paulina has heard of this also. I have just ordered and am going to start Liposomal Glutathione, it gets very well reviewed and is safe to give to children. Our latest mould tests at our property came out good after we had cleaned up & thrown away soft furnishings from the affected room etc. Our hair has become very thin & I think the road to recovery will be a long one. It's a total nightmare. I have also been told a really good Vitamin B complex is essential after mould exposure, have ordered these too. Good luck with everything. I have heard of the drug you have started and am sure it will be effective.
  15. Paulina

    Paulina Guest

    Hi Everyone...

    First of all, I am so happy I could be of help to you Emrob0. You and everyone else have been such a great help to me too...just knowing we are not alone is huge isn't it? We will ALL have great stories to report...I predict!! YES...you heard it HERE first! :D What an amazing group of women you all are...WE all are!! :)

    I wanted to share some news a dear friend of mine told me just yesterday. She spoke with a doctor she sees to measure mycotoxin levels via a urine test and she told me she he let her know he had heard of several people losing their hair from toxic mold exposure and it DOES grow back!!...so stay positive and patient....oh...I know how hard THAT is, believe me! He said taking Liposomal Glutathione and B-12 and Folic Acid are very important for the recovery (as is good nutrition). This is along the same lines as others were talking about here...so I think it is a great start! Be sure to take the liquid Liposomal Glutathione and NOT the (much cheaper) pill form. The pill form is completely ineffective and I'm not even sure why they sell it because this is well-known. The stomach acids render the Glutathione completely useless. The Liposomes (usually soy) that encapsulate the Glutathione protect it from the stomach acids so when it reaches your intestines, it is totally absorbable. If you are allergic to soy, find one that doesn't use soy but some other means of encapsulating the Glutathione. Also, my doctor (who did prescribe this for me long ago) directed me to take it with juice on an empty stomach, a half hour before meals. Let's keep in touch and see how we all do! :) I have also started working out to help with the stress of all of this...that improves circulation...very good for hair!! :) One last thing....if you can take Epsom salt baths regularly (few times a week)...that is a great detoxifier too....and it sure does feel good. CVS Pharmacy has these delicious (smelling!) Vanilla Bath salts and Lavender Bath Salts that smell amazing....just sayin'. :) Have a great weekend everyone!! Big hugs!!!
  16. emrob0

    emrob0 Guest

    Thanks Paulina.
    Epsom salts baths are a good idea, thanks. Have looked into clay baths but it is quite expensive to buy. The brand of Liposomal Glutathione I have ordered is made by Redisorb. Have been advised it's the best??? It is expensive but if it helps I don't mind and will keep on with it. I too have read the capsules are ineffective & that taking orange juice or Vit C with it helps effectiveness. Sure I have already mentioned this but some essential oils have good anti fungal and immune boosting properties too. I have been advised 2 drops tea tree, 2 drops Lavender, 1 drop Lemongrass in a carrier oil (olive oil fine). I burn this in a diffuser when I remember. All safe for children too. I really need to start working out again too-but am embarrassed to go to gym anymore because of my hair-maybe I'll do some walking? We should def all keep in touch with any progress/tips.
  17. emrob0

    emrob0 Guest

  18. Paulina

    Paulina Guest

    Hi Emrob0,

    I just checked out the link. I have read about all of this over a year ago when my doctor first prescribed this stuff to me....all really great info! The link to Dr. Oz I watched really explained the importance of Glutathione well. Thanks for that! I hope others check it out too! :)
  19. emrob0

    emrob0 Guest

    Are you taking liquid Glutathione at the moment then Paulina or did you stop taking it?

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