What Is Wrong With Me? – Jessica’s Hair Loss Story

by Y on November 21, 2007

What Is Wrong With Me? Jessica's Hair Loss StoryI am 24 and of fairly good health. Then on Febuary 14th 2007 I noticed a small bald spot on the top of my head about the size of a dime. I freaked out. I was in a new relationship and thought who could love me if I go bald? I spent months trying to figure out what was wrong with me….my spot growing every day. Within a few months the spot had grown to 2 inches across and was very noticible. I began using a topical steroid cream that caused my scalp to itch and burn but I still hoped it would work. After 6 weeks or so I stopped using it because i was seeing no results. Today is October 31st 2007 and my hair is growing back great on its own terms. It is nearly an inch long and covers the whole spot. I thought it was over. I have been so relieved about my hair growth. My doctor told me it probably wouldn’t happen again. Then I went to my mom’s shop to get a hair cut. She found another spot…. on the back of my head now. I have been tested for everything under the sun. I am at the end of my rope. Why can’t they find whats wrong with me? I got my final test results also today. I can’t believe I was actually hoping it was Lupus so I had an answer. My tests are normal. So here I sit a young woman 24, with yet another bald spot, no answers, no health insurance to get more tests, sick all the time and trying to cope with the everyday struggles of being a single mom. I just wish someone could tell me what is wrong with my body and treat the source instead of the symtoms. At least I have my son and my boyfriend who loves me even if I go totaly bald!

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Dear Jessica,

I am not a doctor, but it definitely sounds like alopecia areata. Did they diagnose you with that? You didn’t mention it in your email, and I’m really surprised that your doctor would be unfamiliar with that disorder. You did mention that you used a steriod cream and that is a pretty common treatment prescribed for this type of hair loss. Alopecia areata is an autoimmune disease in which the body mistakenly treats its hair follicles as foreign tissue and suppresses or stops hair growth. No one really knows how or why this develops. For some reason the immune system is inappropriately activated and attacks hair follicles. Alopecia areata often appears as well defined circular bald patches on the scalp. Many people will get just one or two patches, but for some the hair loss can be extensive. If only one spot appears on the scalp it is called alopecia areata monolocularis. If more than one area if affected it is called alopecia areata multilocularis. People that develop these patches often experiences spontaneous recovery within two years even without treatment. For some the condition is more persistent and they can have repeated cycles of hair loss regrowth. I don’t know if you read Elle’s hair loss story, she has alopecia areata, and in the last correspondence I had with her in October she wrote that her hair was starting to grow in again, which is great news and the thing I do find encouraging about that type of hair loss. Androgenetic alopecia (female pattern hair loss) can be treated, regrowth can occur and the progression can be dramatically slowed, however, it is unlikely that all the hair will return to it’s former state.

The reality is any type of hair loss is devastating. I really sympathized with when you wrote that you had actually hoped it was Lupus so that you would at least have an answer. I have felt that way many a time over the years, hoping that the doctor would find some disease that would pinpoint the cause of my hair loss. The disease could be treated and all my hair would return. Case closed. But I’m lucky I don’t have that “disease” I was looking for to solve my problems, in reality it would just create a whole set of new ones.

It is possible that after this new spot grows back in you may never experience this again. I can imagine how difficult it is to be a single mother and then to have this thrown on top is just so much to deal with. Some doctors believe that extreme stress can contribute to alopecia areata, but there is more to it than that alone. Research has shown that genes can also be involved. Ultimately I don’t think anyone knows exactly what causes it, I think there are just guesses. You mentioned you are sick all the time, I wasn’t sure if you meant that as in sick of what is happening, or that you are actually sick. If you are sick, what do the doctors tell you regarding that alone aside from the hair loss?

Often when I write responses to the emails I receive I feel helpless. At the end of the reply I feel saddened that I cannot provide any definite solutions for the hair loss problems, and for that I’m sorry. I’m baffled how after all this time no one has found a cure for hair loss. My cynical side believes it is because there is no money in a cure only in the treatments. I know what hair loss does to women, how it changes us and makes us self conscious. But, I think it is so important to try and remain as positive as possible, to not let it take over and rule our lives. I know it sounds like an impossible task, but it can be done. My reality is that my hair is so very thin right now, if I focused on it, and all the hair I’ve lost over the years coupled with the uncertainty of the future, I would crawl into a ball and start crying uncontrollably. Nowadays I try very hard to not let myself get to that place, I try and not focus on my hair, and not focus on what I had that now is gone. It isn’t easy, but the more we accept ourselves the easier it becomes to deal with our hair loss and anything else that life may throw at us.

~Y

{ 17 comments… read them below or add one }

Brandy February 4, 2008 at 9:16 am

Jessica,
I have lost almost all of my hair and have to wear a wig. I have had steroid injections which made me very sick and now I am trying acupuntcure. All I want is my hair back does anyone know of any cure? I feel helpless and alone. I hate going anywhere when I wear a cap because I feel like people are staring at me but when I wear my wig I feel like there staring too. With all the medical break throughs hopefully one day a doctor will care enough to find a cure for Alopecia. I do have hair growth in spots but I still have a lot of bald spots. I wish I could say it will go away but for now I don’t know. It started April 07 and has not got better but I am hopeful that I will get all my hair back.

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Tiffany February 4, 2008 at 2:57 pm

Has anyone had acupuntcure help them?

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Helen March 9, 2008 at 2:44 pm

I’ve had alopecia since fall 2006, first in small patches on the back of my head, but now it’s progressed to totalis. Since it’s winter I get by wearing beanie caps, but now that it’s going to warm up I’m getting a wig. I hate wearing scarves because it’s so noticable. I show horses too, and showing in a scarf wasn’t fun. I don’t know how long this is going to last, so I hope that a wig will eventually feel normal for me. I’ve heard that when it’s this extensive it’s less and less of a chance to grow back normally, but I keep hoping and praying that if God has an extra 5 minutes maybe He would help me, but I know there are more important things for Him to do. Normally I’m okay because I don’t think about me not having hair, but when I do start thinking about it, or see a picture of me from just a year ago with long thick wavy hair, I start crying. I really hope they do work on finding a cure very soon, I can’t wait to be carefree again.

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Candace Lewis November 12, 2008 at 1:56 pm

I am a 50yoa black female and I was diagnosed with alopecia areata when I was about 22yoa. I was a little girl when it first started . My hair came out on both sides and it stayed that way until I was in my twenties then I noticed a bald spot in the top of my head about the size of a quarter. That lasted about 5 years then the spot started getting bigger so I went to a doctor and she tested me and told me what was wrong. I started getting the shots in the head and then I became pregnant and my husband wanted me to stop getting them so I did. My hair grew back real well while I was on the shots but the minute I stopped all my hair fell out, the texture changed and it has been coming out every since. Just within the last couple of months it has started back falling out and now it is in the back . I am almost completely bald and I don’t know what to do. I have been trying to find a place where I can get a wig but I haven’t been sucessful. Does anyone know of a website where I might could find an affordable wig that is in style and looks nice? I am at my end of my rope and I know worrying about it is making it worse. thanks

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veronica November 15, 2008 at 2:41 pm

This is to candace lewis.

I think you should try a ‘lace wig’ you can cheaper ones on the internet – just google it. They are very secure and look really good and you can part the hair left, right or middle because the lace matches your own skin it looks like your real hair. When put on properly and you get a style that suits you – it can be misktaken for your real hair! Try one – you will feel 100% better!

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Angela November 18, 2008 at 2:46 pm

Hi Candace,
Although you can usually get wigs cheaper online, I don’t usually recommend it for your first one. If you can, find a good wig salon, even if it means traveling a bit, so you can really get a chance to try different types on. There are a lot of really great options, but being seen by a wig specialist is always the best bet. There is a member in Womens Hair Loss Project Network named Mistique who can really help direct you to what a good next move would be concerning a wig or hair system. Here is her profile link:
http://community.womenshairlossproject.com/mistique
She has been a great help to so many ladies and she may be able to help you too.
Good luck,
Angela

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K Williams July 26, 2009 at 4:29 pm

I have been diagnosed with alopecia as well. I noticed this after my mom died. The doctors think it is from stress. I am on 10,000 mcg of Biotin daily and a steroid to rub on.

I am still devastated over the baldness that has occured on the back of my neck area. I hope that I do not loose all of my hair.

The doctor also put me on an anti depressant.

God bless you all

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Sherry August 14, 2009 at 9:44 am

I have had alopecia areata since the late 1980’s. I usually get one patch of bald on my scalp around the size of a quarter and because I was fortunate enough to have good health insurance my dermatologists would inject my scalp with the cortisteroids and my hair would grow out a few weeks later. At the same time or slightly after I started getting the bald spots I was having fingernail problems. The nails of several fingers would separate from the beds, sometimes halfway down the nail, along with nail pitting. I got tested for fungus which came back negative each time. Unfortunately after all these years none of my dermatologists have found a relation between my alopecia and my nail problem and it wasn’t until last year that I did some research online that shows a relationship between the two but little is known about it. They are both autoimmune diseases and there may be a hormonal/thyroid imbalance. I also have polycystic ovaries and asthma/allergies which may have a relationship with all of the above.
I had been tested numerous times for a thyroid problem but the tests always came back within normal range. Earlier this year I got 2 bald patches in my hair (plus my nail problem accelerated) and because I no longer have health insurance I hesitated to go to yet another dermatologist, but the patches got bigger and the little bit of hair that started to grow back is coming in gray and my husband and I wanted to see if someone else could find a relationship between all of my conditions. The current dermatologist I went to this week confirmed what I had been thinking and researching and also told me that the blood tests I had been given to test for thyroid problems were the basic type and unless you get the detailed thyroid tests you probably won’t find anything. Unfortunately, these blood tests are VERY expensive. Without insurance it cost us over $300 for the tests and that was with the 46% discount we got for paying it all up front ! I won’t know the results for a few weeks but I’m hopeful we are beginning to get to the bottom of things. It’s not like one is looking for diseases but when you have so many symptoms and so many different things going on that make no sense, just to have someone FINALLY be able to tell you you aren’t out of your mind and that there is a connection between all of your symptoms and there is a name (and possibly a treatment) can seem like a relief, I imagine. When I get my test results I will come back to this website and let you know.

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Mike August 20, 2010 at 4:40 am

First of all, I must apologize for any mistake I could make, since English is not my native language.

I have been diagnosed with alopecia areata in 2008, though I can remember I had a tiny bald spot in the back of my head and another one in the right wrist since 2005, which were not very relevant, so I did not asked for a medical opinion. But suddenly, and in a very aggressive way, they started to expand, and new patches appeared in my head, beard and eyebrows. Eventually, I had no hair at all in my arms, legs and chest, and I started to think that i should do something. Then I went to a dermatologist. Blood analyses were completely ok, and she prescribed a topic steroid ointment that didn’t work at all, and made me lost a precious time. Then I visited another dermatologist, who was quite dedicated to this condition (and also vitiligo), and he prescribed intramuscular steroid shots. The results were quick and very satisfactory, though I was always reluctant to be administered this kind of drugs due to the side effects they have on the bones and the calcium absorption. Anyway, I unerwent the treatment and soon my eyebrows got repoblated, my eyelashes regrown, my beard looked normal again and the patches in my head were also regrowing. Doctor considered I was nearly cured, so i started withdrawing treatment following his instructions spacing out the frequency of the shots, since it could not be abruptly withdrawed. But unfortunately, i could see that, one month and half after i was given my last shot, I started to lose all the regained hair… Now i’m on my second cycle of steroids, and now i am even more reluctant than i was before this experience, because i guess my hair may fall again when i finished the treatment.

I have searching on the pubmed, forums, and other sources for an alternative treatment, and I have found out some trials pointing out that there might be a connection between celiac disease and alopecia areata. I also read the testimony of some people telling their own experience, in which, after some months of a gluten and dairy free diet, alopecia areata symptoms totally disappeared. This means that alopecia areata can has some alimentary basis, and thus, we must reorganize our daily diet.

Just to put me to the test (to see if could carry out a diet like that), I’m currently avoiding any food containing gluten, and trying to reduce the ingestion of dairy. I’ve been doing like this for 2 months, and my hair is regrowing, but i suppose it’s because of the shots. Anyway, I have noticed my skin looks much healthier. My skin tends to be oily, and my back had always little red spots, like a microacne. Now all these little marks have nearly disappeared. I often had slow digestion (and that used to make me feel tired), but i could never relate it to a certain type of food, and now this problem is also gone.

I cannot assure that alopecia areata can be cured by following a dairy and gluten free diet, but I have realized that some dermatologist are prescribing this instructions. So I can only highlight that there could be a relationship on what we eat and what it is happening to us.

Hope all this can be useful to you somehow.

Take care everyone.
Mike

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Amy January 31, 2012 at 10:25 pm

Hi Everyone! My name is Amy. I became significantly ill while away in India this time last year. I suffered sever respiratory distress from an unknown virus. When I returned home about a month later, my hair stylist discovered a bald circular patch behind my left ear. I immediately went to see my Dr. who diagnosed it as alopecia aerata and referred me to a hair loss specialist but, by the time my specialist appointment rolled around (a few months later) the patch had filled in. I was thrilled! The specialist also said he couldn’t do anything for me if I wasn’t losing hair. And then it began – I am experiencing significant shedding since mid September of 2011. My part has widened, my hair has thinned to the crown of my head and to the back (creases where my scalp is very visible). I don’t know what to do and feel that my Dr’s are ill equipped to deal with me. My next appointment with the specialist isn’t until April πŸ™ I am so frustrated and saddened by this. My iron stores, hormone levels, and thryroid function all came back normal. Which leads me to believe that this is autoimmune (perhaps because of the significant illness, virus and high fever I had). I pushed for my GP to order some Minoxidil but, I have not been able to apply it religiously twice a day. I also feel there has been an increase in shedding since I began using it. Does anyone have any information they could share regarding alopecia and Minoxidil? Is there such thing as diffuse alopecia aerata? I keep telling myself even if it is Alopecia and it takes my hair I will not let it take my life (as in ruin it) but, I seem to be losing this battle and HAIR daily. No one seems to know what to say or do to help me. Please help!

Thank you kindly,

Amy

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Jessica August 27, 2012 at 9:21 pm

i was dignosed with alopecia on febuary 2012 i was so scared when i seen that little bald spot on my head it did increase in size up to 2 inches…..i was sooooo horrified i cried but actually i am okay with it…its apart of me now….i started going to the dermatolgist in march 2012 and getting shots in my scalp to increase hair growth it is grown about a inch now..my dermatologist said it is caused by stress which in december 2011 i was stressing tremendously..i have TONS of faith and ppl with alopecia god wouldnt give us this issue if he knew we couldnt handle it believe me! KEEP UR FAITH! i know its hard but as long as ur surrounded by ppl that support u!

jessica from tucson az

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Pooja February 20, 2014 at 11:21 am

Hi,

I was diagnosed with alopecia in 2012, it began with a loss of hair in a small batch and because I didn’t care much abt it, it slowly grew and soon I lost the complete hair line from the back, I consulted a dermatoligist last year in 2013 and she suggested me to go for steroids injection at the affected area and I regained 20% of my hair loss in the first month itself,I was also given an oral medicine called Zempred which is to be taken 2 time twice in a week ( pls take thi medicine only after consulting with a doctor) along wit this she also gave me some anti depressants, I took the steroid shots in a gap of 1 month, minoxidil did not suit me at all, it gave me rashes so I didn’t put it frequently, it’s Feb 2014 and I have regained 60% of my hairloss. I’m focussing on eating right , having a healthier diet and avoiding fried food or junk food, it is also very important for us to do some yoga or walk for atleast 20 to 25 minutes or do some form of exercise. Also I’m doing hair massage with mustard oil once in a week, don’t use chemicals at all. Eat handful of nuts everyday. Rest be positive because this phase will pass by, don’t lose ur confidence ????

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rhea April 19, 2014 at 2:55 pm

thank for suggestion. I am from india , I did not see this problem over there.
I got a small pacth on my head, I went to the doctor and he gave a liquid to apply my hair is coming back but today I notice a patch behind my left ear , I am very worried, I love to walk do yoga. I am pure vegetarian . is mustard oil massage helps?

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ritesh May 10, 2014 at 11:22 am

Hi,
Hope that below clears or helps another person with the same problem.
I’m 24 years and have been struggling since last year May when I noticed a tiny spot no hair on my mustache(right side). At that time I thought it was acne as the hair surrounding it usually falls. What started out as what I thought was acne, today is no mustache on the right side of my face. Moreover, I have since lost hair on my right and left side chins. Plus there is scattered or sort of straight lines, not patches of hair loss on my right cheek.

Prior to hair loss I had a lung infection which persisted since 2012 July when I first had it until April last year. Amoxillin(antibiotic) injections and tablets form the hospital were useless, until I went to a private doctor for treatment. He then prescribed some medication which relieved me of pain. Today I still somehow feel a poky pain on the left lung were the infection initially started from time to time when I am tired.

The infection started I believe because I was working in a clothing factory rich in fabric dust and dust itself. I stopped exercising when I was 18 years old. I have noticed that my wife has developed Trachyonychia which is sort of unhealthy nails for about 5 months.

After going through alot of reading and understanding I now think that the cause of it is as specified in sites and book, immune disorders and body reactions. I read somewhere that our body uses oxidative stress to curb infections pathogens. Another word for oxidative stress would be free radicals. To put the final piece of the puzzle i read today that, our immune system uses oxidative stress to manage with foreign beings in our body, but at a certain level, when it is high, it actually causes problems of auto immunity. Alopecia areata(what i suffer from) and Trachyonychia are forms of auto-immune diseases . To curb free radicals we need to detox, exercise and so on. Now I am yet to get a checkup form a dermatologist, but I will have to get a detox,consider strength excercise and other health eating tips. I will keep you guys posted if I come right.
I encourage you guys to keep your mind strong. Remember the greatest power is willpower. Do not lose hope.

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Erin May 29, 2014 at 8:58 pm

hi first of all i want to say sorry cause i’m not very good with my english^^

i’m Erin a 19 year old female… I started to have these bald spots on back of my head since 2009, when i was 14 year old.. I didn’t suspect anything at first but it became bigger as time passed by and my friends at school noticed it, so I told my father and he drove me to the hospital, the medical assistant gave me some kind of medicines, I forgot their names and my hair grew back. I was really happy then but it came back the next year, the medical assistant consulted me to the doctor because i had Thyroid back then, But the doctors didn’t prescribe me any medicines and said that it was due to oftenly hair styling e.g hair dye and rebonding which I’m not that often as they thought! yea I got scolded by the doctor..

Later on, my Thyroid just disappear without taking any medicine, so I guess it was not a Thyroid and my hair grew back within a year! But at a slower rate than before. Guess what, it came back again.. you know what hair means to girls, I have to change my hairstyle and the most devastating thing is, I cannot do anything other than waiting patiently for my precious hair to grow back.

In a nutshell, my bald spot never go on back of my head now, the hair grew back but at a very slow rate and another bald spot occur… I’m trying to keep calm but now that its been 7 years, I started crying at nights and hoping that someone can find it cure. I envy the people around me, so that’s why I hate if someone touch my hair or walk behind me, cause they’ll definitely see it! But I’m not letting this matter to affect me. I’m going to be as positive and cheerful as I am right now! <_<

But still, just reading and thinking the fact that I'm likely going to completely bald someday makes me scared, terrified and upset cause I'm still young! I'd rather diagnosed with Thyroid than having these bald spots that has no cure! Honestly, my confident level goes down. Please someone find it cure soon…

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Pooja January 16, 2015 at 10:03 am

Hi All,

It’s pooja again…. Just wanted to update on my situation with alopecia. I haven’t lost the hair I grew back last year…. But I have had new patches -over 2. My dad is a positive guy he says may be this is how you will heal completely, well, that’s my dad just not wanting me to lose hope. Well also last week I saw a couple of hair strands on the patches I developed in 2012. I hope I slowly recover from alopecia soon. Also I am using q sera serum for the last 4 weeks, will tell u if it’s helping me. I have started taking biotin capsules as well for a week now. Will tell you if it helps.

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Pooja June 23, 2015 at 3:35 pm

Hi

Recently I was diagnosed with deficiency of iron so it’s been a week I am taking iron supplements along with biotin and I have seen new growth in a week, no kidding!! Plus I’m regularly putting minoxidil 5% for a month now.

Hope this helps you too

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