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So how did I get here? I find myself asking myself that very same question on a daily basis. The year 1999 was the year that forever changed my life. My hair loss began after having stopped taking the birth control pill Loestrin FE. Later I found out that it is or at least was, an extremely high androgen index pill. Who knew? Certainly not me and certainly not my gynecologist who prescribed it to me.
So the following months after I stopped the pill my hair began to shed and shed like crazy. It was all over the place and coming out what seemed to be by the handfuls. I tried to find answers online, but I found nothing. I went to so-called “hair experts” also known as dermatologists who aren’t any wiser than the other dermatologists, but just know how to capitalize on the vulnerability of women. They were of no help either. Blood work… within normal levels. I felt frustrated that I couldn’t point to it on a paper and say “ah ha that’s it, my estrogen is low” or “there it is, I need more iron.” There simply was no explanation. I should point out that I also saw very expensive “hair experts” who told me I wasn’t losing my hair. What? Like they would know better than me, I’ve only live in this body… umm forever. Of course if I revisited those same doctors today they wouldn’t be telling me that now. This certainly isn’t one of those instances where you want to be right and say “I told you so.”
I resolved myself to the fact that it must be androgenetic alopecia (female pattern baldness) and as such treated it accordingly. I tried everything including Propecia, yep that’s right the pill thats only prescribed for men’s hair loss, I took. I also took it along with Minoxidil (Rogaine For Women) but neither one of those did anything for me other than leave me a greasy mess. Rogaine does work for some women, I just wasn’t one of the lucky ones. I was then told by a very respected dermatologist who treated women with hair loss, that women who have hair loss caused by stopping the pill sometimes do well by starting another low androgen index birth control pill such as Orthtricyclen. So I did that, going against what I swore I’d never take again, I restarted the pill, that in conjunction with aldactone, which is basically a blood pressure pill with anti-androgen properties. I had to try something. So we can fast forward to today. I will say that for most of that time leading up to the beginning of 2006 those treatments seemed to be helping. I continually lost hair but it always seemed like there was enough to get by. In 2006 I noticed a dramatic increase in shedding and it took off like crazy in 2007. The shedding I experience today on a continual basis is of the same magnitude as when I first stopped the pill, the difference is, back then I had a ton of hair, so there was some to spare. Today I don’t and it gets less and less by the day.
It’s interesting what you get used to, what you can learn to accept and adapt to with time. I no longer have dreams of having the hair I once had before this started. I just want it to stop falling out and to perhaps reclaim a little of what has been lost this last year. That would still leave me with thin hair but it would be enough to get by.
I feel stuck and trapped. I am stuck on taking Orthotricyclen, basically forever, because I can not chance stopping for fear of having an increase in the mass shedding I already am already experiencing. I am stuck taking 200mg of a blood pressure pill (aldactone), that can’t be healthy. But, I made those choices at the time to be proactive to give myself a chance to be able to live and enjoy life. Many times I’ve wondered the damage I may be doing to my body in the long term for taking these medications. And I wonder extra nowadays, because it seems that whatever benefits they served are no longer present. It is as if all at once the medications stopped working, only I’m stuck continuing to take them. It is a horrible feeling.
So that is where I’m at today. I am stronger than I ever thought I could be dealing with this. I seem to get by just enough, but my thoughts are always with what is happening. I think about it 98% of the day. It consumes me, depresses me and has caused me to cry so much over the years that I’m almost positive if I had collected all the tears it would be enough to fill a giant size pool.
I continue to believe that things will change, I find hope when it seems hope has abandoned me, and I pray things will get better.
Technorati Tags: aldactone, hair loss, minoxidil, orthtricyclen, propecia, rogaine, womens hair loss
{ 89 comments… read them below or add one }
julie 09.13.07 at 7:57 am
I was on Ortho at first, then my gyne prescribed Zoloft for depression and ambien so that I could sleep! Now that’s a cocktail…and not the fun kind! I’m now on Spironolactone and its a weird drug in the way it makes me feel emotionally and physically…(of course, i’m always the “one in a million women” that encounters that side effect)
What’s hardest is accepting the fact that its happening. We always have this “why me?” attitude about things, we feel perfect…we’re not mean people, we do good for others and work hard toward our own betterment and yet…we lose hair. The fact is there is no direct correlation…sometimes the best things happen to the worst people, and vice versa. Now I look back and say, wow, that was a tough challenge to face up to! I look at it as a sense of accomplishment…it didn’t kill me, touch wood! We’re always being challenged in life, one way or the next…think about the challenges you’ve faced up to now. Think about projects or work, life’s little kick’s in the behind…how do you tackle those issues now that you’ve faced the hair loss challenge? Were you passive or aggressive? You might be suprised with your answer!
Habits I picked up…
I had this habit of picking up the strands that shed and place them back on my head. Silly…I knew it wouldn’t take root but at least it wasn’t on the floor. I had a habit of collecting the strands and putting them into a bag. My mom saved my hair from my first hair cut and I wish I could do something with it…it would be a nice art project. I must have stared at the mirror and tried comb over styles a milion times. I inspect my scalp daily, hunting for new hair…hoping it would sprout from one of the dormant follicles. I’ve stood in front of the mirror with a razor in hand, thinking about why I should or shouldn’t just shave it off!
I know everything about situations consuming your thoughts elevating your depression and crying giant pool size amounts of tears…Why do you allow it to consume you? For me, I thought about mind over matter and decided to tell myself that “it’s under control”…i wear a wig, I get dressed…I may not always feel 100% put together but at least i’m not suffering from dry, frizzed out, colored or permed hair…Speaking of noticing things…there are so many full-header’s that don’t even properly manage their own hair. One woman sat next to me while getting a manicure and said, “you just look so perfect! Your hair is gorgeous, you look great!” I just blushed and thanked her but deep down I said, “if she only knew!”
Some days, I forget I wear a wig unless I get a reminder…the elements, or people’s stares as if they’re trying to figure me out!
Steer clear from negative thoughts and do something for yourself everyday…force those smiles when you look into the mirror…who knows, you might wake up convinced. I’m so so happy to have found this website. i’ve been searching for support groups like this for 10 years. I’m so glad I’m here…
admin 09.16.07 at 8:12 pm
You know how many times I thought to myself… I just wanted to shave my head so bad, I want this to all be over with already, after all that is the direction I’m heading in. I saw the video of the girl who made hair loss video montage of her hair loss story, and I think why can’t I be as strong as her.
Talking about habits… lets see I used the hair catcher in the shower drain for years so I could count ever hair lost in it’s entirety. I recently gave up this little addiction because I have grown tired of spending so much time counting, the number is always too much to count and it just makes me focus on it more. I do still find myself counting the hairs lost when I comb my hair, but the ones in the shower just go down the drain and never get counted. Lets see, I’ve showered in the dark to avoid seeing the massive shedding of hair and watching the hairs getting stuck all over my wet body, I’ve also combed my hair in the dark (a popular favorite of mine)
Julie, are you still taking Spironolactone? How long did you take it for or have been taking it for? I still take 200mg of aldactone in conjunction with the orthotricyclen.
Why do I allow my hair loss to consume me? I suppose because it is so out of control, I’m afraid. Afraid that it is only a matter time before I having nothing left. It falls out faster than I can vacuum it. And if that happens then what? Then I have to face my reality, my destiny. I pray for strength. Strength to deal with the hand I’ve been dealt, I pray for realization that life is more than the hair on our heads, more than a number on a scale, more than a scar or facial blemish. Rather, who we are is inside. What we put out into the world. I pray for this self realization because no matter how hard I try on my own, society dictates otherwise. The media aggressively attacked Britney Spears recent VMA performance. For what? A few extra pounds, what does that say to the youth of America?
julie 09.17.07 at 9:41 am
You know, you are stronger than you think you are. Really. Its the little steps you take that may help you realize, “It’s going, going, gone.” Tomorrow is another day, you make the choice of whether or not you want to be happy tomorrow. DO NOT ALLOW The time you spend obsessing, is time and energy that can go toward other things that make you happy. trust me…i was there so often and still find myself there. I constantly fight back the tears and the urges to obsess. Somedays, I notice myself getting prepared in the morning without my wig on…I’ll stand there in front of the mirror and see pattern baldness get wider and worse. My hair is so baby fine, if you grabbed hold of a strand it would featherly fall in your hands, without pulling!
Read this little anecdote: One day a massive flood covered the grounds of a small town. Several people were trying to escape the flood on cars, canoes and boats…they came across a woman and tried to save her…she told them to move on, as her faith and prayers were going to save her…as the waters and storms grew stronger, a helicopter came to her rescue, again she refused and continued to pray for God’s help. The flood consumed her home, and there she was on the roof with nowhere to go….but heaven. As she reached the pearly gates, there God stood before her. She bellowed, “The flood took our land, our homes…i prayed for you to save me…what happened?” God replied, “Lady, cars drove passed you and you refused, the people on the boat tried to rescue you…the helicopter was there to take you up and still you refused, you tell me what happened!”
So you see, maybe all this strength and prayer is giving you answers. Everyone on this message board is living proof! You just have to open your eyes and heart to receive the answer. Its easy to pray for it, but what steps are you taking to truly receive the answer?
julie 09.17.07 at 9:59 am
By the way, I am taking Spironolactone, just started about month ago. It costs a lot but I have no medical insurance anymore…I hated it because it was the drugs that caused my hair loss, and those stupid companies refuse to help me get a wig!? I CRIED FOR DAYS AND FOUGHT WITH THEM TO NO AVAIL. I want to start a revolution. If I could round up all the FPB, AT, AU women, I would march to those insurance companies and DEMAND they make changes. There has got to be something we can do to fight these people.
You know, I get so angry about television, I don’t own one anymore. I’m not going to allow others to dictate my appearance. To hell with it all! You get to a point where you get so angry, that it ironically brings peace to yourself.
Mona 09.17.07 at 10:04 am
julie, Where you fighting with the insurance company or the pharmaceutical company that manufactured the drugs that caused your hair loss? Are you seeing any results from the spironolactone?
julie 09.17.07 at 12:51 pm
I was fighting the insurance company along with the doctor that prescribed me the medications - I took: Ortho tri-cyclen; broke out with acne and still dealing with those scars; ZOLOFT from being so depressed that I gained weight, had acne and started losing hair because of the Ortho; and then AMBIEN, I was so depressed, fat and full of acne that I couldn’t sleep from all the pain. I even tried accupuncture for hair loss and it didn’t work!
Last time I went to the doctor, just for a routine physical, a pharmaceutical rep was chasing my doctor when I had an appointment with her. I was so upset that my doctor actually talked to these people, they were cutting in my time! Ever since, I always hated drug companies and their practices. They act like they are doing good for the world, when in fact I think people are so controlled by the notion that they NEED medication to survive. I have the old-fashioned mentality that if you eat right, exercise, take care of yourself and take vitamins, you should be fine. There’s no need for medication cocktails. As for the drug companies, I wanted to work for one just to see what their practices were all about. I lost the job to nepotism, one of the doctor’s daughter got the job instead of me.
Needless to say, I never went back…if I go to the doctor now, I lay it out and tell them i’m not interested in what they have to say, I just need their script!
I know what I eat and I exercise, if I need to see a doctor, then I will see a homeopath. I trust in natural medicine, it’s been around a lot longer than these man-made drugs.
As for results, I haven’t noticed anything other than a lot of nausea, dizziness and irregular periods.
admin 09.18.07 at 7:13 pm
Hi Julie -
What an awful whirlwind of events you had to go through, I’m so sorry to hear that. I hear stories like that and I just get sick to my stomach. Doctor incompetence. That’s what it is. We all are raised to believe that the doctor knows what’s best for our body, take this, take that.. After all he went to medical school. Nothing could be further from the truth. Doctor’s are people to, and as such, they are not exempt from making horrible horrible mistakes at the cost of their patients lives.
I also tried Acupuncture for hair loss, it didn’t work for the hair loss but I do think it provides in enhanced sense of well being so that you mind and body are more clear, more balanced.
robbie 12.02.07 at 9:20 pm
It’s amazing how consuming this “hair loss thing” can be. I was 44 and my thick, beautiful hair began falling out. I had a pony tail like a horse’s mane which is now three years later the thickness of a Sharpie marker. I’m still not even in pre-menopause so the hair loss is not related to menopause. My hair loss began less than a year after my 15 year old daughter (who had thick curly hair) began losing her hair. Female pattern baldness runs absolutely no where in my family. My mother at 73 still has thick hair. My dad was bald. My mother’s dominant gene for hair should have “overridden” my father’s balding gene, but something freaky happened. My daughter and I are the only two women in a huge family of probably over 70 that have this problem. My daughter at 19 has lost at least 80% of her hair and will need some type of hair piece very soon. I have lost probably 60% of my hair which is very thin on top, extremely receded at the temples and I have lost most of the hair on my crown, above my ears, the back of my head, and now along the nape of my neck. I have tried everything with no success. I was so depressed that I ended up in a psychiatric ward which was probably the best thing that could have happened to me. I met a Dr. who said that if it truly was male pattern baldness that I needed to try medications for MPB. He provided me with several different ideas but would not prescribe the medications because of the potential side effects. On my own, I started taking Avodart (women of child-bearing age shouldn’t even touch the stuff) and after two weeks I noticed that I was losing less hair in the shower and during the day. I’m not sure it this is just coincidental or what, but I am committed to take this stuff for at least six months to see what happens. It can increase the chance for cervical, uterine, or breast cancer, which does not run in my family. I am willing to take the chance at this point because I literally can not live my life as a hairless woman. I will keep you posted on the “hopefully” success with the Avodart.
Rachael Jean Harper 04.02.08 at 3:04 pm
Dear Y
I so know how you feel. The medications can be such a trap. You must feel damned if you do and damed if you don’t. We feel so desperate about what to do when our hair falls out. I saw a quote that struck me the other day. It said A man’s hair is his strength and a woman’s hair, her beauty. That means a lot to man or woman, though not so widely accepted by women to lose their hair.
I thought that I would mention that I have never really been on the pill(except for 6 days once, made me feel awful) and have lost 60-70% of my hair. The docter wanted to put me on stuff like rogaine and monixidle, but these kinds of chemicals wreck havoc on your body. I decided that it is healthier for me to go bald and learn how to live with attractive hair coverings and wigs than to fill my body with chemicals in the hopes that my shedding will lessen or that I will grow more hair.
I hear the sadness about taking these meds and feeling trapped, and we are when we feel that they are not doing us any good. Would it not be better to approach this in a way where we are being as good to our bodies as we can be? Like eating a wholesome diet and helping to keep the toxic burden off of our systems so that we can feel as good as we can without having hormones that are wacked out and cardiovascular systems that are manipulated by drugs? It just seems to me that this can’t possible be the answere. I am not happy about hair loss, but appreciate that my body has been so good to me all of these years and I want to honor her by letting her have her own balance so that she can honor me also, with good health. I try to feed my spirit a diet of loving and kind thoughts and live a kind life. I am not saying that you should do as I do because we all have our own way of handling things. I am just trying to point out another point of view when it comes to these strong medications that are not helping. If one feels that they are helping, than that is a different story. Perhaps your body could use a drug vacation so that she can reestablish herself. Personally, I feel that if my hair comes back it will be because I supported my adrenals, nervous system, digestion, etc with wholesome foods and nutrients rather than supporting the drug companys and the doctors. Put the money on good nutrition and nice hair items that make you feel good. I may sound bossy and a know it all, but I truely don’t mean to. I so understand that we will do anything to save our hair. It is just that some therapies are worse than others. I would trust the Earth Mother’s medicines before the modern day chemicals. This, I send to you with love for you are truely so good to all of us and have helped each and everyone of us with your hard work to give us this blog,and i so appreciate your sensitive kindness. Hugs Rachael Jean (RJ)
kniedz 04.20.08 at 11:13 pm
Your story is so sad. And so familiar.
I feel I was following a very similar path to you, and to so many other women on this site. Its an amazing thing, how the situation that can bring us into such deep despair can at the same time teach us so much and elevate us in equal and opposite amounts to our depression. I suppose its a perfect illustration of the duality that exists everywhere in life and in nature. I’m glad to say I found a regime that has worked completely for me, but it took over three years of serious searching and thousands of wasted dollars. I suppose in the end nothing’s wasted if it leads you to what you most need and the life experience you most needed to have. The natural program I’m following is giving me massive new growth all over my head and all I can say is I wish and hope this for all others on this site to find what really works for them. In the mean time I suppose my advice is to never give up. I believe surrendering to the situation is not the same as giving up. Hair loss is a distinct sign that something isn’t right in your body. Surrender to what IS is important so you’re not hurting all the time every day, minute by minute, but we owe it to ourselves and those who love us to keep trying to heal the imbalance within us that’s caused the outward symptom of balding. Love and best wishes to all. K.
Janet 05.02.08 at 6:41 pm
Julie,
Can you tell me what salon you go to in the Chicago area for the Reprieve Hair System? I’d like to give it a try, but I live in Michigan and I would have to make a special trip to Chicago so I want to make sure I go to a salon that is well experienced. How much does it cost and how often do you have to go back for maintenance or replacement?
Thank you, J.
Rose 06.10.08 at 4:48 am
kniedz:
What “natural” program are you following? Please indicate all.
B 06.18.08 at 10:49 am
I am 35 years old and this is only the beginning of my story. For about the past month I have been losing handfuls of hair every morning. I’ve been to the doctor and all blood levels are normal and she thought it was just stress. I’m using a shampoo that is suppose to stimulate hair growth and I see a dermatologist next week. I have come to terms with the fact that I may lose all my hair, but I’m sure I have no idea what that will be like. I have a hard time in the morning watching my hair go down the drain, seeing it stuck to my body, and seeing it everywhere. Like some of you, I tried collecting it because no one in the beginning seemed to believe me. To them it appeared as though I had a full head of hair. I’ve noticed it much thinner all over and I have two, almost bald patches on the sides. I look everyday for new hair growth. And the other day I was vacuuming the dog’s hair from the hardwood floors and found that I’m now sheddding more hair than the dog. My husband now believes that I have a problem. I don’t know where I should go from here. What I do know is whatever happens I will accept what GOD brings me and know that he will not bring me more than I can handle and I will not lose faith in him. And maybe he sent some of you here to comfort me and I will do the same for others someday.
I appreciate the support and everyone sharing their personal story.
Ann 06.18.08 at 5:31 pm
Hi B:
Here are some blood tests that I have been told by docs to have done. Have your iron levels checked, but not just in general. Make sure they check your serum ferritin level. Many women (so I have read) who experience hair loss at such a quick rate are iron deficient. Apparently, in order for hair to grow your serum ferritin level needs to be above 70. Mine was a 5 when it was checked, so I am taking iron supplements from my doc to see if I can raise it. Also, hair loss often occurs from thyroid problems. Have that checked by levels of T3, TSH, and T4. This should tell you doc whether you may have hypothyroidism. Finally, have a gyno check your hormone levels (like testosterone) etc. This might tell you if you have PCOS or some other imbalance that could cause hair loss. Finally, you said that you initially thought it was stress…has something tragic happened within the past 2-4 months? That could also cause hair loss where you don’t see the loss until months later. Oh, and have you gone on any crash diets lately?
Hope some of this helps. Please let me know! Hang in there!
Meredith 06.22.08 at 9:10 am
Thank you all for posting on here. I am feeling very sad about my hairloss. I am 32 years old and about 2 months ago, I noticed my hair starting to fall out. As you all know, it was that awful feeling of seeing so many strands - everywhere.
I went to a doctor and they checked the thyroid and my iron. The only thing that was low was the ferritin at 22. The doctor just said to take a multivitamin and if that doesn’t help - go to a derm.
I checked with an ARNP that I go to and she suggested taking the Slow Fe and B12.
I’m just feeling like I don’t want to wait to see if something changes if I am not even taking any supplements that are going to maybe work. Seems like a waste of valuable time and lots of hair.
Do you guys think that I should see someone else? Should I up the Slow Fe so that I am taking two pills a day? I’m so confused.
Also - did anyone find that cutting your hair shorter helped at all (emotionally at least) or do you find that longer is better?
Thank you!
Heather 06.30.08 at 6:10 pm
Hi I just I would tell you all that I had hair loss resulting from taking birth control pills on and off. I did find something that helped me. Nexxus Biotin Shampoo and Nexxus Biotin Creme along with Physicians Hair loss formula for women. It worked for me. Thought this would help some who haven’t given up just yet.
Cris Weatherby 07.05.08 at 10:09 am
Has anyone tried Nioxin Shampoo and conditioner? I have a feeling that it might be yet another product that I have purchased that will do nothing but give me false hope. Also, I have losy a lot of skin pigmentation from a condition called Vitiligo that started just after my hysterectomy 12 years ago…….just about the time I started noticing my hair heading for the exit. Yikes this is awful….
Cris
Erin 07.08.08 at 7:55 am
I had the same experience but mine was while I was on LoEstrin. The side affect of hair loss was on the bag that came with the script along with others. I started to experience just about all of the side affects of that pill. Before I got on this pill I was on a few others for 6 years, I only took LoEstrin for 2 months at the most. I don’t remember exactly but I know it wasn’t long. I don’t think you should stop looking for help. It doesn’t seem like you have a genetic issue that can’t be reversed. As for taking that medication you are on you have to remember that most doctors are all about the money and they love to prescribe drugs. (Look at the tissue box in you doctors office it will most likely be a drug of some kind) My best suggestion is to find a doctor that cares and knows what they are talking about and talk to people see if they know any doctors that don’t practice out of an office. Those are the doctors that cared enough to get out of the insurance game and help people one on one no matter how long it takes or how many questions you have. Thank you for posting this maybe people will see it before it is too late.
Rhonda Holt 07.11.08 at 9:15 pm
If lo-estrin is a high androgen pill, then why has it helped my hairloss and when I go off it will fall out again then when i go back on it stops it and clears my skin and I have no weight gain issues with it either…I have tried others in the past that caused hair loss.. orthotrycyclene, ellesse, that caused problems, but i went back on lo-estrin and it helped with my endometreosis and my hair loss and my skin is great and no probs with weight gain…They say its one of the highest andrenic pills but it has helped me.. i wonder if it is due to our bodies are all so different and what one may cause the other may help…This one has helped me.. I have once lost about 50% of my hair going off and satying off over a year then decided by talkin to my OB that it may help to go back on so we tried it and it did help…Our hair all thins as we age and due to stress and what we eat and not getting the proper nutrients that feed your hair skin and nails..I have studied this for 20 years and if anyone needs help and advice to what things have helped with hair skin or nails you can email me i have tried tons of things and helped others too and would love to help you.. lilladyvixen@yahoo.com Rhonda
Rose Mardel 07.17.08 at 8:16 pm
Hello, I too have thinning hair and now have noticed my crown is showing a clearing in quite a noticeable way! After I searched Google so much, I realize that while there may be solutions for many or some of you… I don’t see any for me because I’m 80 yo! But despite this I went to have a free (no obligation)consultation at “Hair Club” in NYC where I live. I understand they have branches in several other cities. They photographed my crown and told me it wouldn’t work with transplants because there are still some hairs in the exposed scalp and the new hairs would compete with the old hairs for space and kill them. I had read about it somewhere else. They have instead “EXT” (Extreme Hair Therapy), a very expensive set of 5 steps for 6 months. They claim you can see results in 3 months. I’m thinking about it, although for the above age reason I doubt it can help me. I might have tried it if I had been at least under 60! :o)
I’m sorry I can’t be of any positive help but I can’t even help myself!!! I just thought of sharing with you the little I found so far. I’m thinking about it for myself and don’t know whether to start or not.
I know trying to find a way to restore the hair or at least stop the hair fall through the RIGHT physicians is expensive and most frustrating, but it’s necessary to do it with them to make sure we won’t make a sad situaition, worse…
I wish you all best of luck! Rose
P.S. Meantime, I’m trying to study the proven medications mentioned by many of you in this forum, and may try them - who knows - there may be a light at the end of the tunnel even for an octogenarian!!! LOL!
Kitty Herman 07.17.08 at 9:40 pm
I too have thinning hair and have shed as many tears as hairs. I started loosing my hair when I was 18 when I first stared taking birth control. The Dr. at the time changed my prescription and said it would grow back. Of course, it never did. My hair has slowly thinned over the years and I am now going on 43 years of age. My hair loss has been limited to the top of my head and is becoming very whispy. I have considered weaves (which are very expensive, short term benefits, and cause more harm in the long run); I have tried rogain which made my head itch like crazy; and don’t know what else to do. My doctor has recommended that I stop taking birth control pills and go onto another type of contraceptive (IUD or somethin along those lines), but I am terrified of loosing what I have left. I don’t know if going off the pill will cause me to loose even more hair, or (like the original Dr. said) maybe my hair will return. My Father and my grandmother on my father’s side have experienced hair loss, but my brothers and sisters all have thick manes. I take Zovia 1/35 now. I plan to try to research what others taking Zovia have experienced in stopping usage. I have tried the Nexium shampoo, feels tingly, but that’s about it. Just more money out the window. I don’t know why I am comforted by sharing this, but I am a little. Like many of you, I think of it every minute of the day, spray my head with sunscreen and just try to keep my thoughts positive.
Rachel 07.21.08 at 4:42 pm
I have not posted on one of these sites yet, but I read your stories and thought I would give it a try. I am 25 years old. I took Orthotricyclen Lo for about 6 years and decided to stop…Bad idea! That’s when the thinning began. About 3 months later. I didn’t really notice wads of hair coming out. My hair had become thinner over the years, but I still had a good bit. But once I stopped taking the pill, my hair seemed to gradually thin.
I began taking Orthotricyclen in again 3 months ago in hopes to stop the hair loss. At first I thought it was helping but that was just wishful thinking. I also went to a dermatologist who did bloodwork and decided everything was normal except my iron was on the low side of normal. I didn’t get the exact ferritin level, but I am going to call tomorrow to get that info. I have been taking 325 mg of ferrous sulfate for 2 months now. I thought that was helping but in the past 2 weeks I have noticed drastic shedding! I never noticed it like this before. My hair is so thin in the front and top that I have to part my hair way over to the side to try and mask it.
I don’t know what could be causing this sudden shedding. I’m eating right and exercising. I’m taking my iron and a prenatal vitamin in hopes it will stop. I also continue to take the Orthotricyclen. I don’t have a family history of female hair loss. My grandmother still has a head of hair, my mom has thinning hair now, but she has only started thinning due to meopause. My father is bald, but would that effect me?
I’ve been able to cover up the fact that my hair was thinning for a while now. No one would believe me, but now it’s noticeable. I’m so scared that at 26 I won’t have much hair left. I have bought a minoxidil formula and spray that I can try. I didn’t want to do that yet just in case it is tellogen efluvium and not AGA. I also heard it makes your hair fall out more and I hate the high price.
Does anyone have any advice on this? Will it make my hair fall out a lot more before I notice any difference or is it subtle compared to the hair loss I’ve been noticing? Also, why is my hair thinning all over? Would this mean TE or AGA? Should I go ahead and use the minoxidil and just see if it works? I know if it does I will have to use it forever but wouldn’t that be better than losing all my hair? Also, how long does it take for iron supplements to take effect?
I’m so sorry for all the questions, but I thought that since you all seem to have gone through some of this, you might be able to help. Thank you!
evey 07.21.08 at 6:19 pm
Wow, just reading your stories I know I am not alone although I can’t stop the tears from falling as I write this. I am 28 (almost 29) and I first started noticing that I was losing quite a bit of hair a little over two years ago. It’s been very hard to accept because I was always known for having beautiful, thick, long hair. In the past two years though, I have lost about 50% of my hair. At first, no one would believe me and thought I was just imagining it, but now, it is hard for them to deny my widening part and the patchy area on my crown. I hate washing my hair and do it every other day because I get so depressed seeing all of the hair I lose. I am so obsessive about it that I am constantly checking my hair in the mirror to see if my scalp is exposed. I know that everything happens for a reason and I too believe that God wouldn’t allow this to happen to me if I couldn’t handle it, but it is still hard. We live in a world where we are constantly judged by our beauty and as vain and shallow as it sounds, I don’t know if I am ready to give that up yet. I don’t know what it is like to be unattractive; I don’t mean to offend anyone, but it is so hard for me to not be able to do anything about it. I know I am also intelligent, kind, a good friend, but it hurts when no one understands what you’re going through. I have researched so much about this topic already, but I have decided not to use minoxidil or any other medications that might help because I have always tried to keep the toxins that I put into my body to a minimum. I anticipate that at this rate, in about a year or two, I will need to buy a wig or shave my head. In fact, I am already giving serious thought to shaving my head. I know beauty is only skin deep, and I think maybe that is what God wants me to learn–that I am much more than my hair and my outward appearance. Thank you, thank you to all those who have shared your story too and I wish everyone the best.
Rose Mardel 07.22.08 at 11:55 am
Hi evey and others! Do shave your hair, especially now now that’s in fashion and many beautiful celebrities do it…while keep trying ways in which to stop the shedding and/or grow more hair. One never knows.
Keep finding out the medications or certain things the people in this forum mention and **cautiously*** try them. Some things may work for certain people and not for others.
But at least you’ll be most fashionable and enjoy yourselves a whole lot more! :o) Rosa Mardel
P.S. I’ll register with the new nickname: Rosedala
Rhonda 07.23.08 at 7:50 am
Hi everyone!
I just wanted to say to evey that I totally understand how you feel about your hairloss and relationship to God. I too have wondered if my hairloss is a lesson from God. I was always know as the “pretty one” of my three sisters. So much of who I felt I was as a person was tied up in my looks. As a child I was complemented after a band performance or basketball game on my looks and not my ability. Ex-”You were the prettiest one out there.” When I began losing my hair, I had a great fear that I would not be loved anymore. I also had to redifine who I am as a person. I am more than my looks or my hair. Beauty is only skin deep. My husband and family still love me. I knew my parents would, but my husband’s reaction I wasn’t as sure about. He has been excellent. After I lost my hair the first time. I wore a wig for over a year. My husband was constantly telling me I was still beautiful. I thought “Wow, love really is blind!” My hair did come back to a point that I could go without a wig again. I am now going through another major shed as a result of having my second child. It is funny, but it does get easier. Losing my hair has not been as traumatic this time. It still bothers me a lot, and I do still obsess, but not nearly as much as I used to. I ordered a wig which will be done sometime in Sept. hopefully before my sister’s wedding. I hope I have enough hair to make it until then. If not I go for the ball cap look. The only problem is I can’t wear it to church. I hope to continue to learn from this experience. I need to learn to accept what I cannot change, but if there is something out there that would help or solve my problem. I would go for it in a heartbeat. Best wishes to everyone.
lisa 07.30.08 at 6:46 am
I live in the uk and cannot find any sites that can even come near to knowing how im feeling at this hair loss thing that is going on. I had my son 16 months ago and literally 3 months to the day after having him my hair started to fall out, it came in handfulls and as someone else has said it got to a point where i was dreading washing it as i couldnt bear the sight of all the hair in the plug hole. No one has mentioned my thinning hair but i just think they are trying not to hurt my feelings, everday i look at my scalp to see if there is any new hair growing but instead all i see is more and more scalp, ive been tested for everything and all came back clear, yesterday i placed an order for something called Provillus for women, there are good and bad reports about it but i am willing to try anything, i have been taking vitamin supplements for hair for the past year but nothing seems to work. Approximately a year ago i had my hair cut into a concave bob and it seemed to stop the shedding for a while, i get it trimmed back every 4-6 weeks and this seems to help with the shedding. I cant believe that 6 years ago i used to be a hair model with beautiful thick hair.
Almost nine years ago i had a very traumatic experience with the loss of a child and i have suffered with depression since then and my doctor seems to think that this is why i suffer with hair loss, who knows? I only know that this is starting to really affect my day to day living, ie, scared of going out incase someone says anything. I will keep you posted on how the Provillus works.
Love to all, lisa x
lisa 07.31.08 at 11:24 am
hi all, ive just come across an internet site that looks fabulous, try this, Lucinda Ellery Consultancy, it is a company based in london. Look at the different types of hair extensions etc that they do.
J Doe 08.05.08 at 6:02 am
Hello, I’m 25 and have noticed that I have lost over half of my hair. I have been on ortho-tri-cyclen for 10 years, and noticed that I lost most of my hair when I was off of the pill (for about a year) during a stressful time. Since I started on the pill I noticed that over the years my hair was thinning gradually, until around 23 when it was dropping out in chunks (like stated before, I was off the pill and under a huge amount of stress at this time). I’ve been on and off the pill within the past year and have noticed that my hair is not falling out in huge chunks anymore but it still seems to be gradually thinning. Will this stop? When I stop taking the pill for good will my hair grow back? I’m kind of scared that I’ve lost over half of my hair in the past 10 years and am only 25; what will happen when I’m 40?! Is it the pill that is causing this?
Miriam 08.05.08 at 6:13 pm
Hello Everyone, I can barely muster through the tears enough rationalness to write this out. I am at the beginning of what you ladies seem to be going through. I am about over a month into realizing I am losing my hair and like another lady here, I’ve been hospitalized over the depression and shock.
I’ve always had incredibly thick and long hair, I also was a hair model like someone else here. Everyone knows me for my hair.
walking by the mirror in the bathroom on June 26th (how pathetic that I remember the exact date!) I flipped my hair and it stopped me.. I explain.. what the! I am missing hair!?! How have I not noticed this. I had noticed in photoshoots that my part was a little wider or stranger than it used to be, but chocked it up to a bad haircut maybe.
Well I started coming this way and that and it looks like the parts are widening or they are blending into each other, with just islands of thicker hair left in between. I noticed my crown just yesterday plenty bare with just a clump of strands in the middle.
The anxiety and the nauseaus feeling I have everytime I look at it is causing me so much stress and my loved ones as well. Sad fact of the matter, like many of you they “Can’t See” what I am talking about and I am either neurotic or crazy. Apparently it’s obvious only to me.
I am not losing anymore than I ever shed when I brush or shower. It’s about even LESS than we I first figured this out. So it boggles my mind. I am with some of you that I am counting them in the shower and on my hair brush. I won’t let my husband touch my brush, just so I know what’s mine or his (he has long hair too). I don’t get why this is happening. So far when I was hospitalized they did blood work on me including my thyroid and it all came back normal. Though I have yet to do one for hormones or iron.
I have NEVER been on the pill and I’ve never given birth. I am 37 years old and way too young still to even be in premenapaus.
I’ve gone to one STUPID dermatologist where I live and I am guessing he thought that I meant I had huge bald spots when I called. Because he blew me off and just asked.. is your dad bald or balding?? I said well balding.. but he is 70 years old after all! He didn’t prematurely go bald either. He said..well then you will be too… and it made my heart sink! He wouln’t hear of the fact that I was living on a couple of cup cakes and diet 7-up a day. Also I CONSTANTLY had it up in a bun with a metal clip that was anchored on the very top of my hair.. the weakest part, because of my highlights. Also I was suffering from a deep depression this past year and had worries and I stop taking care of my hair very well .. I’d wash it once a week, no matter how sweaty and greasy it was. So greasy that even a good shampoo wouldn’t remove the gunk! It was constantly itchy.. to the point I thought I had lice, and was always “damp” because of the bun it was in around the clock (my hair WAS down to my waist). I noticed it got dryer ..VERY dry around the middle of the length and nothing that I had EVER done before to make it snap back to a healthy state would work. Oddly enough the back has now gotten healthier trying to see what is wrong with the top.
Besides the derm telling me that because my dad is balding I will too without so much as a medical history on me.
My hairdresser and the girl who has shampooed my hair for ages say it seems to them like traction alopecia from the barrett pulling my hair cause of the weight of my hair..and also I might have had a mild scalp infection to boot. Because again I don’t shed excessively. But I’ve gotten to this point, so it has to have at one point.
It’s at the very top middle and the crown.
I’ve been hosptalized because of my severe reaction to this and every single day is a struggle. The doctor ordered me on Lorazepam in emergency, but he will not refill the prescription (which was a week’s worth) because he thinks I am at risk for addiction. So I guess he would rather me go crazy or worse! I am driving everyone around me nuts because of this. My parents are worried sick… I flew in to be with my parents and I sit here like a zombie locked up in the guest room, except for last night when I cried in my mother’s arms. I’ve gotten down on my knees and asked god for help, I know there are worse things in the world… but this is heart breaking. My husband who has been a jewel through this whole thing is finally losing his patience. They just CAN’T see it. I don’t know how or if they are turning a blind eye.. but they can’t. That is added stress that he will leave me because this is taking a toll on me and us. I can’t stop stressing AT ALL.. so I am sure that is making this worse and giving everyone a reason to say… it’s just stress!
I flew in to have my hairdresser (well the one who replaced my hairdresser of 18 years who passed away this January and caused me endless heartache over) give my hair my body and layers and free it up of the weight .. and it’s a catastrophe. It just looks like a fancied up mullet to me and yet I can still see the wide part and crown plain as day, as opposed to everyone teling me once it was cut I would noticed THAT was the problem. Now I have an UGLY cut and I am still left with those spots.
Can I technically be balding if I am hardly shedding? Was that all it was going to shed when I figured out this was happening and took up a healthy lifestyle again… will it grow back now??? and how long will it take??
For a week out of all this I tried to be optomistic and say it was just the hair clip that yanked my hair out for over a year, since I only took it off to wash my hair once a week…it had to take it’s toll. But for some reason I dread it’s AGA.
I want my life back. No matter how much I complained of it before, anything is better than this. There aren’t enough towels to wipe my tears.. My knees are bruised from praying so very much. I had two events I was sooo looking forward to attending and now ..I can’t. My mind wanders to suicide everyday. Doors just keep getting slammed in my face… no one can help me and I am chocked up to just being paranoid. I dread the point when they will finally see the truth. I pray that day never comes. I have cried so much I have no more tears left. I am in a constant half sleep state lying in bed and I see a flash in my mind of a balding head and it rips me to shreds. Even medication that I need to keep me calm, I am refused.
Here is the only place I’ve posted this. I haven’t been able to stomach going to hair loss sites… it all seems to futile, so pointless..everyone is desperatly searching for an answer or a miracle that might never be.
Good luck ladies… thank you for listening.
d 08.06.08 at 8:34 am
Miriam, I can totally relate to your story, feels like you wrote it about me. I too sometimes feel suicidal and my marraige is falling apart because of all this shit. I feel like, no, I HAVE alienated everyone in my life, the anguish over the hair loss is unbearable. I have seen a derm who was the only person who has given me hope. I’m hoping the iron and biotin will turn things around cuz I need my hair to improve or I’ll lose my mind. (can you hear me crying?) Has anyone out there seen regrowth and a major improvement once their ferritin levels got above 70 like they say?OMG!
Miriam 08.06.08 at 12:42 pm
D,
My relationships are falling apart as well. I am staying with my parents at the moment and like a little child my mother slept with me last night and listened to me cry about every awful thing in my life that I am now sorry for. She is shattered when she sees me cry,so I try not to do it in front of her much. Other than in Emergency back home and that nitwit dermatologist I saw.. I have no answers. They tested me in emergency just for the over abundance of pills (over the counter sleeping pills) I had been taking to numb myself. They checked my liver and kidneys and the doctor checked my thyroid, which all came back “normal”. I am on vitamins now that supposed to help regrow hair and keep what you have. I admit like I said.. I do not shed more than I am supposed to. I shed lately shockingly less than 40 hairs a day and I have very long hair.. except now on top where that idiot hairdresser chopped off hair yesterday. I can not feel “bald” spots… I just see the thinned areas. That’s why I am so desperate to figure out something now!! It’s proving impossible to wait the 3 months or more needed for hair to regrow if it was a scalp infection or traction alopecia.
Worst of all is NO ONE believes me! They are treated me like a crazy obsessive person. They think I’m actually mentally ill and need a psychiatrist (which I went to see and was a fiasco in itself). I keep telling them.. why can’t you seee!!! Do you not want to admit it to me because I keep freaking out!?! Everyone tells me..if we had seen anything or if we do, we’ll run not walk to a specialist. Yeah right, after reading all you ladies stories here.. it’s FUTILE. I tell that to my family and they turn around and just ask.. why is it hopeless? because you read it on the internet?? ridiculous!
My poor father because he has that half moon hair in the back and some patches of hair up front considers himself “not bald”… I seriously hope he doesn’t think I can go through life like THAT.
Slowly I’ve been trying to imagine going through life with a wig, or the endless doctors I am going to have to see. With no insurance to boot.
My parents have set up on a appointment with their doctor tomorrow 200-400 a visit, I am still NOT convinced I don’t have a medical disorder. It’s strange to me that just one day I look at figure out my hair is falling out ..after looking at it on daily basis.
I’m glad I found this site. The other sites out there are frightening and this one at least lets us share our pain.
lisa 08.06.08 at 11:40 pm
I went to see the doctor again the other day and he finally had a look at my scalp, he said i am definately thinner on the top than everywhere else, but couldnt give me anything, just asked if i had a healthy diet!! of course i bloody do, i was in tears as he examined my scalp and when he said yes it is thinning i felt my world collapse, i have now come to the conclusion that i will just shave it off and get a wig and get my stylist to cut it in the same style as my own hair, does anyone know of any good wig companies? My friend came to see my yesterday and she said she cant see a difference! is she blind!! i have looked on the websites and everytime i do it seems more and more hopeless, i dont know who to turn to.
Elisabeth 08.07.08 at 8:53 am
I can only say that after dealing with thinning hair all my life, at 47 I have given up on therapies and drugs and vitamins; they didn’t give me a thick head of hair, just a bit more “fuzz”. I have been wearing clip in extensions, after years of taped in, which I learned to do myself, due to expense. The only thing I do notice, is that most people who are overweight do not have thinning hair, unless over 40, while I do know LoTS of women over 40 with thin hair who are on the trim side - does this have something to do with it? I eat meat, vegetables, healthy mostly, except too much wine, to numb the pain and anger I feel most of the time. My husband is wonderful, he says he will love me with or without hair - I fear I won’t have any by the time I’m in my 60’s. But, as many of you have said, it’s almost more important than breasts - at least we can wear padded bras, or get implants. But the hair thing, is so noticeable! I now am ordering another set of hair pieces; I can’t go the whole wig route yet! Custom is best, but am trying a new one, top secret hair (.com) not the greatest people to deal with, but they have hair much cheaper. And before I could get by with side pieces, but in the past 10 years I have had to wear a crown/top piece as well.
Thanks for sharing, you ALL know what this is like! Complete Hell! I just wish I could find a remedy for all the anger and depression I feel. Hugs to you all! Elisabeth in Italy, 47
Lydia 08.09.08 at 12:04 am
I’m so glad I found this website. For a while I thought that I was the only young gal(27yrs) to have thinning hair. I started thinning @ 21 after the birth of my son. I didn’t notice really much hair falling out, all I saw was what appeared to be a receeding hair line. No one else thought much of it. It about 2 months later I began really shedding. Of course everyone said that it was due to pregnancy but I knew it wasn’t. My mother has lost about 70% of her hair, and all my aunts have thin looking hair. My sister was blessed with a head FULL of thick, curly hair and it shed quite a bit, but it never thinned out.
My “receeding” hair line seem to grow back in but I was definitely thin looking on top. I would have episodes that would last about 2-3 months where my hair would fall out like crazy, then it would stop. I did try a few shampoo’s and vitamins and such to try to thicken it up but honestly I was not that consistant with them. I definitly was sad and sometimes I would cry, but I guess seeing my mom with extremly thin hair and still beautiful reminded me that there are much worse things in life than going bald.
My hair was pretty stable for about 2 years. It was still thin all around, but because I could get alot of “lift” in my hair when I blow dry upside down, I could make it seem like I had normal hair. the front still looked thin but I was content. I just had to limit the ways I would style it so that I could hide the thinness.
Right before I got pregnant the second time, I started using rogaine for women. I only used it at night (I felt like it made my scalp too greasy to use during the day) and got excellent results. I had enough regrowth in the front that it actually looked like I had mini bangs! I was very pleased. After some research, I decided to purchase the Laser Comb by Hairmaxx. I wasn’t that consistant in using it, but I did feel my hair thicker.
I then got pregnant with my second son. I hoped that my hair would not thin out any more. I had to stop using rogaine and the laser comb while I was pregnant, but my hair was not thinning out at that time anyway so I was okay with that. After baby I used the laser comb for preventave measures, but again I was not very consistant. My hair definitely felt thicker. Since I was breastfeeding I needed to get Dr’s ok to use rogaine again. 4 months after baby and my hair is thinning out ALOT. I have that “receeding” hair line again and my scalp in the front is very noticeable. There’s no hiding it now. Dr said it is ok to use rogaine while nursing so for about 1 month I been using it day and night CONSISTANTLY and doing the laser comb CONSISTANTLY. So far it does not seem to slow down the shedding, but today I did notice that I’m having quite a bit of regrowth in the front. The hairs are only about 1/4″ long, but I see quite a bit. Thank you Jesus!
I’ve decided not to get to stressed out about it since there are many new ways to have hair. I mean, those celebrities with their beautiful hair aren’t born with it! They buy it! And so can I! One way or another, I will have hair!
Beleive it or not, there is one good thing about this second episode of shedding. For quite some time I have been suffering a number of ailments like thinning hair, vision problems, weight gain, fatigue, difficulty concentrating and a hoarse voice. Dr’s thought it my be my thyroid, but the levels always came back normal. My mom said that one of my aunts was diagnosed with a disorder that ran in families and it was thyroid related. Of course I told my mom that my levels were ok. I silently suffered for many years. It was not until this shedding that I finally asked my aunt what was it that she was diagnosed with. She said it was Hashimoto Disease, an autoimmune disorder. I began to tell her my symptoms and she said “yep, that’s it!”. I’ve made my Dr’s appt to finally get some treatment and hopefully things will start turning around for me. Funny how blessings can come out of distressing circumstances!
kat 08.11.08 at 6:14 am
My nightmare started when my menstrual cycles ceased for 2 months in March and then started up again in May. I was suffering from Anorexia and kept it from everyone including my doctor’s.
Well when I got my menstural cycle it didn’t stop until the middle of June. I was put on Loestrin 24 and a small dose of Estrogen in late May and continued for a little over a month. The reason I stopped? My hair started shedding badly, in clumps at times. I knew when the doctor’s prescribed me the birth control that I shouldn’t take it. I just had a feeling. I fought with the gynecologist, until they finally were able to talk me through it.
After ceasing the pills in late June due to the shedding of hair I noticed my hair stopped shedding some. Then weeks went by and the shedding ceased. I had shoulder length hair. The reason it stopped shedding? Well I was now off of the birth control pill and I was eating a good balanced diet again. I gained 4 or 5 lbs that I had lost. (I was down to 105 when I was anorexic, at a height of 5′4 1/2). I also am taking a multivitamin, Alive Protien Shake and eating veggies, fruits, whole grains, etc.
For the hair loss I decided to cut my hair into a short natural. I’m African American and have very curly hair and it looks cute this way. I am seeing improvement while I eat this way and treat my scalp like rare silk. I am careful with it. I keep it conditioned and do scalp massages all the time.
I want alot of you to be positive about this. When we think negative, usually negative things occur. I know that my hair will come back. It will take a couple of months, and I already see my edges coming back, and the back of my head where most of the shedding occured is growing in fine hair.
Just be positive and prayer helps as well. I hope this helped someone.
michelle 08.11.08 at 9:55 am
after expressing my concerns to my bf regarding my hair loss he sent me this link. i want to say i’m glad i found it but half way through the post i was sobbing uncontrollably. my hair has been falling out pretty rapidly over the past year but i thought that the loss was stress related as my grandmother had just died and left a whole box of unpleasant surprises for me to deal with. i have been mentioning this problem to friends who assure me that they “can’t tell” or that women start losing a bit more hair when they hit 30 (which i did last year) and frankly, it’s annoying. i mean, i’m all for reassurance but my hair is obviously thinning and the hairballs keep piling up! what the heck is left?? i started taking folic acid, vitamin b complex, prenatal pills (for the extra iron) and this hair nourishment vitamin i bought at GNC. i have also gone through bottles of nioxin shampoo and have now switched to a baking soda solution which is free of any detergents that might be harming my hair follicles and also allows me to go a full week without washing my hair as the baking soda causes minimal greasiness. i have an appt for a physical this wednesday but i am more than positive they will come up with NOTHING. like the original poster, i don’t expect my hair to bounce back into the condition it was… i had that hope a few months ago but now i just wish it would stop falling out. i took a photo of my hairline yesterday and cried for the first time about my hair and i guess that opened the floodgates because i’m sitting here sobbing as i write this and totally losing hope with every key stroke.
now as for the birth control, my bf and i are in a long distance relationship so i have been on and off birth control for the past two years. i’m not sure if this has anything to do with it, but like i said, the hair loss has only been happening for about a year but more rapidly for the past 9 months. i really hope the doctor has some answers because i’m absolutely losing it. i started going to counseling to seek stress relief however, i don’t think i can find any relief from the stress caused by my falling hairs.
i want to be positive but it’s soooo hard =(
admin 08.11.08 at 10:08 am
Dear Michelle,
Welcome to the site! I’m glad your bf sent you here, you are definitely in the right place to search for answers and find support. I am so sorry for your sadness and having to go through this. I personally think the pill could very possibly be responsible for your hair loss. I should state, I am not a doctor, but birth control pills seems to be responsible for a large number of women losing their hair. Oddly enough sometimes they can also help women suffering from hair loss by stabilizing the hormones. It is a very individual thing. When was the last time you went on or off the pill? what pill was it? You are doing the right thing going to the doctor… true many times they offer not much in the way of answers for women’s hair loss, but it is a place you should certainly start.
Also head over to the Women’s Hair Loss Project Network if you haven’t already. There are a lots of really knowledgeable and supportive women there http://community.womenshairlossproject.com
All The Best,
~Y
Miriam 08.11.08 at 8:36 pm
Michelle,
I know how you feel. I found this site last Wednesday after 6 weeks of dealing with this hell and uncertainty. My parents ended up taking me to their doctor Thursday. My mother actually wanted me to NOT tell him about my hair loss and make something else up and then maybe bring it up. He knew right away it was BS. Since I have NO insurance, he was hesitant on doing labs on me right then and there because I had labs done back home in the Emergency room and they were going to have them faxed down here where my parents live. He diagnosed me as Depressed.. geeee ya think!! But he also looked at my hair and this time I got a diagnosis of Telogen Effluvium. Where as the last derm/idiot told me without asking a single medical history question that it was AGA and to deal with it. I was satisfied for a bit, but I wondered how can he be so sure. Unless I arrested the hairloss about over a month ago… it’s no longer falling out in bunches. When it was I thought it was because I wasn’t washing it often and kept it up in a clip all the time. I did get scared at the time that my hair felt dead and was falling out more than usual (but I am a huge shedder anyway). Yes I guess you can say I’ve been depressed before this.. but now it’s 10000 times worse.
I just don’t see how from one month to the next I didn’t notice this wide spaces between parts and then I did. Just 4 weeks before my “discovery” I was going to take a family portrait and had fixed and messed with my hair then and saw nothing.
I am praying it is TE… during the months before this horrible discovery, I didn’t eat well or if at all, at the time I thought it was funny since I would lose weight. I’m not laughing anymore. I was also working out without the benefit of nutrients. I had that monster clip in my hair constantly pulling on it. I didn’t wash it as often as I should of. I WAS depressed, but not to this extreme.
I have arrested the shedding for the most part. I haven’t over shed for a month. But what disturbs me is wondering if they hair will ever come back! In the paperwork I got for the TE from the doctor.. it says a fine fringe will start to appear on the forehead hairline and it IS happening. But something that keeps making me sick to my stomach is now I’ve read that AGA mimics TE. I have lost NOTHING on the back of my head and sides. My ponytail is the same if I were to put it up, well save of course for the hair that my stupid new hairdresser butchered. It’s just the middle of the top of my head and a bit of the crown. I want to go to a really good derm here in Los Angeles that won’t blow me off… but part of me doesn’t, I don’t want to find out this is AGA. I don’t think I could live with that diagnosis. I had my poor dad in tears today.. he so afraid for my life. My panic and anxiety are THAT bad!
Miriam 08.11.08 at 8:37 pm
Also to Kat, thank you for posting that. It’s given me some hope.
lisa 08.12.08 at 4:04 am
go to the website that admin says, i have just joined yesterday and its fantastic
lisa
Lily 08.12.08 at 6:35 am
Miriam-
Try to improve your nutrition. You need more than cupcakes!
Eat lots of protein and flax seed oil and B vitamins are good for hair. Chamomile tea can help calm you naturally.
It is not hopeless. Don’t forget that there is always a hair transplant as a last resort. Very expensive though and do your homework to pic the right doctor. But there are other things to try first (have you talked to anyone about topical medicine). If it is alopecia, it may take several years to improve. But it is important to remeber there is help out there. We are lucky to live at a time where there is help available! I hope you are feeling better.
Hugs,
Lily
anouk 08.13.08 at 6:53 am
I am overjoyed to have found a community of women who know exactly what I am going through. I have experienced the “it’s all in your head, you aren’t losing your hair” comments. But like another post said, who would know our bodies better than we would!? I am so embarrassed to tell anyone but my husband and even he, as well meaning as he is, can’t understand how much this affects my self esteem and daily life or offer me the support I need. I have also encountered doctors who are less than sympathetic to put it mildly and don’t believe my story. They think I have a family history (I am adopted with no way to know my medical history) and wouldn’t even consider that I knew myself and my body. I would like to tell my story and see if anyone has gone through something similar and maybe get some validation, if only for me.
I decided to dye my sandy blonde hair red a couple of years ago. I went to a very reputable salon and had a demipermanent dye put in. I had so much hair that the colorist would have to go back and mix another bowl of dye! Fast forward 2 years. I decide I want to go back to blonde and I asked my stylist the best way to go about this. She said we’d have to highlight it back but strip it first. I trusted her and she started to work. An hour or so into it she kept saying we need more toner and burned the living hell out of my scalp! I sat there stunned but thought this was normal. Went home and waited the obligatory 2 days to wash my hair. I am telling you, the very second that water touched my head, it tangled up like a mass of writhing snakes! I couldn’t even get my fingers through it. And on top of that, I would have strands ans strands of hair coming out. I had no idea what to think. As time went on, more and more hair was coming out, covering the shower drain, the bathroom floor and would even ball up in the dryer and come out in these tangles! At first I thought I was crazy because I was seeing a little bit of scalp in the front. It kept going farther and farther back and I was OBSESSING! So much so that I went to my derm and she ran all the blood tests and put me on a biotin supplement. Needless to say it kept getting worse and she referred me to a specialist. He did a few more blood tests and decided to put me on spiro and rogaine 5 percent. I hated being on medicine and the rogaine made my hair incredibly greasy. I am like my people on this site and I dread the days I have to wash my hair. Not to mention this doctor had no bedside manner whatsoever (aka he was a total ahole) and made me leave the office in tears. As if I could feel any worse and this guy is saying people make up every excuse under the sun for why they lose their hair and my salon story was my “cover up”. Can you believe the nerve? All I know is one day I had the thickest head of hair, one that would give me headaches if it pulled it in ponytail too long as it was so heavy, and the next I was having gobd come out! Why would I make up a story? Aren’t you supposed to be honest with your doc? One day I confronted him and never went back. I went to my general practioner who I trust and admire and he actually thinks that my hairloss is stress related and put me on lexapro to combat my depression and anxiety over this issue. I have to say it has helped me not focus so much on the hair loss. I am 28 years old and have dealing with this for 3 years. I have seen some hair growth sprouting in the front and not sure if it was from the spiro/rogaine but I stopped that months ago. I was getting facial hair (long peach fuzz and even a mustache!) And couldn’t take it any more. Talk about adding insult to injury. Now I am in holding pattern emotionally, kind of resigning myself to my fate. We are thinking about having a baby so I am hoping this could help me grow back some of my loss. And if it all falls out I can blame it on the pregnancy. Much easier than the truth. I think of shaving my head weekly but work in a professional that would not condone that behavior unless there was a serious illness. Does depression not count!? I used to be such an outgoing person and now I am so self conscious. Does anyone have a similar experience or any advice for me? I feel like no one can understand unless they’ve been through it and I feel like I’ve found my safe place in this community. Help please! Anouk
karina 08.31.08 at 9:44 pm
My story is exactly the same! How sad. Just i took diane -35 and it caused hair loss forsever, then i took another very light pill and it helpped a little. I didnt want to keep on taking it so i ve stopped it 3 month ago and since the last 2-3 weeks i ve noticed that i start to shed like a crazy again and the hair structure is worsened again badly….
admin 09.02.08 at 2:35 pm
Hi Karina -
I’m so sorry you are going through a bad shed. How long did you take Diane 35? What was the other pill you took? I know the feeling of not wanting to take a pill forever, so I totally get why you stopped. I think since you’ve already committed to stopping the pill you should see if through and give it some time to see if you hair loss stabilizes. Give you body a chance to work it out. In my opinion that would mean like 1 year. You can always re-evaluate thing later and get back on if you think it was helping you. I did this with Aldactone, I stopped taking it years ago (100mg) and then I noticed a worsening of my hair loss so I jumped back on, and increased the dosage to 200mg. Getting back on things is always an option.
All The Best,
~Y
Mary 09.22.08 at 9:08 am
My heart breaks for all of you who are going through this. But, please read my introductory blog that I just posted. Reading posts on alopecia websites, I feel like I’m really strange for just accepting my hairlessness and letting people see my bald head. It’s the way I am now. Other than one course of Prednisone, I never considered taking any medications that would affect my otherwise good health. For me, there was no question about damaging my health for the sake of hair….am I just weird, or what?!
Yes, I went through a time when I thought it would be the end of the world for me if I lost my hair. I cried and raged and obsessed for months. But when I shaved my head, I got some control back. Then I went through it again with losing my eyebrows and lashes. And when I finally lost all my hair a few months ago, I quickly decided that I couldn’t stand to cover up my head and be hot most of the time for the rest of my life. It’s so much easier, so much less bother and stress, and SO much more comfortable to just be my bald self. I have three looks: bald (much of the time), scarf (often, when it’s cool enough), wig (seldom, for dress-up, and only when it’s cool).
Please watch my YouTube video “Alternatives to wearing a wig”. While you’re there, do a YouTube search for “Gail Porter”. She’s a British TV personality who lost all her hair and who refuses to cover up at all. There are videos of her on the air, bald. She’s inspiring…I wish we had someone like her in the U.S.
I’ve come through all those classic stages - denial, grief, anger…..to acceptance. Once I accepted that this is who I am, and allowed myself (slowly at first) to be seen bald my friends and in public, it just didn’t matter so much anymore. Yes, it was hard, and still is at times. I went to an art reception last weekend bald - the first night-time event I’d gone bald to. After the first couple of introductions, I forgot about being bald, and everyone seemed not to notice. As always, I had a few conversations about alopecia, which just helps raise public awareness.
Hugs and best wishes to everyone,
Mary
Kimberly 09.24.08 at 1:55 pm
Mary you are my hero. I hoped to get where you are someday. I am still at the stage where I am trying various treatments in the hopes that something works. Through the strength of this group though I am finding I obsess about my hair less than without this community. Thank you.
Vivian 10.07.08 at 2:58 am
I’m always cold. I wonder if this has something to do with my blood circulation and hairloss. I’ve taken flaxseed oil for over a year but it doesn’t seem to help. Might start on iodine.
What are other peoples thouhgts?
Calum 10.08.08 at 5:01 am
I just want to thank all of you for sharing your stories. I am also at the beginning of the long process of figuring out why I’m loosing my hair. I first started experiencing shedding a year ago after a major surgery. The doctor said it was normal and not to worry and eventually it did stop. About 2 months ago it started falling out again by the handful. I have been through three weeks of blood tests testing just about everything they or I can think of. Thyroid functions are normal (although I’m sure many of you know the debate about what “normal” is for that), Iron levels are “normal” but on the low side at 40 so I’ve started taking a supplement, and hormones are supposedly normal. I feel like many of you do that this is just a bad joke. How can everything be normal and yet I still loose enough hair to fill a brush every day. I have been on birth control for years, taking Yasmin until it stopped my periods all together a year ago. I switched to Orthotricycline to try and keep some semblance of a normal cycle going but stopped after a month and the worst depression I have ever experienced. Then they put me on Yaz, but it didn’t really fix anything and I kept forgetting to take the pills. I made a decision to stop taking the pills and now I wonder if all the switching around and medications are the reason for the hair loss. Does anyone know if the hair will grow back once the medication clears my system? I’m going back to the doctor soon so if anyone has any other ideas as to what it may be, they would be appreciated. I feel like I have explored every possible cause at this point. And again, thanks for your stories…it is hard to be 22 and loosing your hair. I’m glad that I am not the only one and I’m not going crazy!
Lilo 11.24.08 at 1:22 am
Vivian
Me too feel always cold and my doctor said it was because my Thyroid functions is low and prescriped me pills for that
Unlike all of you who don’t know the reason why you loss hair, I have so many reasons that cause me to loss hair
1. My Thyroid functions
2. Genatic reasons
3. I have 3 major surgeries in the bast 10 years
4. I am always stressed and nervous
5. I am too busy to notice what am I eating
So my problem is which of those reasons are causing me to loss my hair
any way… sometimes I feel its getting better after taking those pills for Thyroid functions , and sometimes not… I really can’t tell
Hang on there girls
Lilo
Courtney 12.30.08 at 7:53 pm
When I was 21 I lost all of my hair in two and a half weeks because O allergic reaction to Anti Biotic… I had a lot of hair and was super long and I didn’t have time to cope with the fact, I had no time at all to accept it. It just kinda happened so quickly
Julia 01.03.09 at 3:32 pm
Courtney, did your hair grow back?
Beth 01.09.09 at 10:45 am
I was also losing my hair and at first attributed it to having had a baby. But she turned 2 and i was still losing my hair at an alarming rate. After doing loads of research on my own, i found that (in my case) it was the TYPE of androgen in my pill that made a difference. When i was off the pill or on ortho-novum (for example), the hair loss continued. I started Loestrin Fe 1/20 and it stopped. Basically, what i found was that it was the combination of estrogen, progestin and androgen in the pill. For me, having a pill that was lower in estrogen and progestin and used norethindrone acetate versus some of the other types of androgen (i.e., norgestimate, desogestrel) worked the best and stopped 100% of my hair loss.
My sister, on the other hand, has lost her hair for years from being on the pill because of the extra estrogen. She has finally stopped the pill and with the use of Nioxin, her hair is in fact growing back. She has always had more estrogen than me, even though both of our levels are considered “normal”. I guess that everyone is different and you really need to take a look at your own personal make-up, if you will. Hope this helps somebody out there.
Rhonda Holt 01.11.09 at 2:34 am
Hi everyone, I just cry so hard to hear about your saddness and knowing what us ladies go though, no one can possibly understand until they go through it them selves…I too went off the pill and was adviced to go back on and the one i chose was the lo-estrin 1/5 30, its helped me stop mine too, and grow so much back but not like i had in my younger years, I am now 42 and my crown shows alittle and it makes you not want to go out side because this damn beauty industry has hurt us all and we now need to find that self love and exceptance, I have IC bladder disease, with MS and endometreosis, so many health issues may contribute to hairloss.. I want to share with you all that I have tried one thing that was amazing and my hair no longer sheds at all.. I dont know if everything works for everyone but please try this… First be on a very good multi vitimin, mine I get from vitacost, its the NSI womans formula, its the best and get your self some NSI royal jelly capsules and take them 2 times a day, then the important part, I have had a few mail me and gave them this advice and hope they have tried it, “Braggs Apple Cider Vinegar, no other brand… You mix to start equal parts in your spray bottle with water..Yes it smells, but if it grows your hair and stops the loss its worth it…I shampoo my hair with a few different shampoos i alternate with and they help too.. After you get out of the shower towel dry your hair, then spray the vinegar into your scalp and rub it in making sure to soak your scalp, then wipe off the drippings and comb it in and let in set until your ready to put your gel or styling products, this takes out the smell… You can get the braggs book and it too has topics on how to use this, its amazing and you can use the royal jelly in the capsules and rub it into your scalp at night when you sleep, them wash it the next day…I promise this has worked for me and I was just testing it out with no hope and the results are amazing…It feeds your follicles, and cleans them out..It detangles hair, and your hair styles great with it…I have been a nutritionist for years and went to cosmetology college, and have studied these things and tested so much on my self, if anyone wants any more advice they are more then welcome to email me at lilladyvixen@ yahoo.com, I know what you are going through and would love to help if i can and give you some hope… Please do try this as a few others who I have suggested are having amazing results….Well take care everyone and try and remember, we need to all try to except and love exactly who we are…We are all blessed to have each other to share with and it helps to know others are out there who share our same experiences… I do hope to hear from you in the future… And remember……
“A true friend is someone who knows who you are,
Understands where you have been,
Excepts what you have become,
Yet still gently allows you to grow” W.S.
Love Your Friend Rhonda
BETh 01.11.09 at 10:44 am
HI Rhonda–
That info is great. I have been reading about both royal jelly and apple cider. i just have one quick question about the royal jelly. some of the info i’ve come across mentions that it has a hormone effect (it supposedly contains some sort of estrogen and testosterone). this concerns me a bit, just because i am starting to think that my hair loss could be related to hormone imbalance (along with iron deficiency and perhaps minor adrenal fatigue). i’ve also read that royal jelly can act to balance hormones and help with thyroid issues but, do you think that the hormones in the royal jelly could be detrimental at all to my already whacky hormones?? also, is it more beneficial to to take ingest the supplements or to apply royal jelly topically?
thanks for any info
BETH
Rhonda Holt 01.11.09 at 11:19 am
Hi Beth, thanks for your reply, it was so very kind, and the more help and education we can give others the better…I my self take the supplements in the morning, the the womans formula vitimins help balance your harmones too, I take them through out the day not all at once, I am on many I love and that have helped me so much, the royal jelly I would cut the capsules a few and squeeze them into a small cut and add your vinegar just to mix it..They say you can add egg for more protein too…Just like a plant needs water it also needs some nourishment plant food to grow to feed its roots, well we feed out hair from our intake and can feed and cleanse the follicles on the outside in, I would take the royal jelly once or twice a day, onve to start then give it time see how you feel and you can go to two later, then once a week I would do the nightly scalp treatment…Royal jelly is high in protein and other aminos, it wont hurt your harmonal system, it will balance it out..Our bodies thrive from certain nutrition as a plant does…And just like the sweet lady said before my first comment, the lo-estrin helped her like it helped me…There is something in that pill that helpes hairloss in many and has no weight gain affects, other pills seem to cause weight gain and hairloss so this tells you there is something about this pill, it may not be the same for everyone…Please try this i really noticed after a few weeks with the vinegas, and get the braggs book it will help you alot, I also apply this to my skin all over after my shower and its done wonders…I also take gycolic Garlic capsules, these are in the bible as natural things god put down here for us and they say they have harmonal balancing, anti inflammatories, natural antibiotic and anti infection properties, plus my father is taking it in a juice drink or a capful when he has heart burn and it has worked great for him…I too would ue it as a drink in juice with the royal jelly capsule, it will benefit us more on the inside as well as using it on the outside of our bodies…I do hope this has helped you as well as many others, I am still here at lilladyvixen@yahoo if anyone would like any more help or advice…Take care my dear friends… Love Rhonda
Rhonda Holt 01.11.09 at 11:48 am
Dear Beth, Sorry I just went back and realized it is you who wrote the last paragraph that I responded too…Shows how much I pay attention..lol Anyway its great to be Hear from you and hope we can stay in touch…Hugs Rhonda
BETh 01.11.09 at 3:53 pm
thank you Rhonda. you sound positive and knowledgeable. i have just started seeing a naturopath because for 2 plus years i have been saying that ‘my body is out of balance’. she seems to think that i have food sensitivities (due to several major symptoms in addition to hair loss). i’ve done some reading on royal jelly and it certainly sounds like it is FULL of nutrients that can be taken orally or applied topically. i am going to give it a shot once i figure if/what i have sensitivities to.
you mentioned that you are a nutritionist (this is so interesting to me!!!) do you know anything about MSM for hair growth?
Thanks again SO MUCH
Rhonda Holt 01.11.09 at 7:45 pm
Hi Beth, thank you for your kind friendship, I hope your going to use the vinegar too, that is the icing on the cake… Yes I take a msm glucosimine/chondroiton, combo, I take 2 twice a day and yes its very helpful, and works great with chromium picolinate/ thes two alone will amazingly clear anyones skin…I have so much more iwould love to share with you and if you want to email me at lilladyvixen@yahoo.com I could have more info to share with you.. Take solaray super digestaway with every meal you eat, its amazing and helps with the simulation break down of fats, carbs and proteins… and the best calcium on the market is called prelief, its the purest most digestable calcium, and i take it with most foods and it takes the acid out of the foods so they dont bother your digestive tract…Its great!! I do hope you email me and would love to help with anymore advice you may need, nutrition, skin hair or nails, I am not perfect but i have studied for years and my own experiences speak for them selves… Thanks and hope to hear from you again… Hugs Rhonda
lori 01.18.09 at 11:43 pm
Did the Avodart work for the lady- I do not see where she has reposted?
Vivian 01.19.09 at 8:05 pm
I was wondering if anyone knows when the shedding will stop?
I went off thr pill 4 months ago and the shedding started to get really bad 3 weeks ago. My wedding is in seven weeks and at the rate I’m lossing hair I will be bald at my wedding. Will the shedding ever stop?
I was even beginning to see new hairs grow - they are still there for now and it’s the long hairs I’m losing.
I knew of the dreaded she