Hi all. I don’t know if i’m stepping over the boundaries here and if I am, please let me know. I mean no disrespect. I am a family member of someone who has recently experienced hair loss. she’s my big sister and we live together. this has been an absolutely devastating experience for her. She started to really notice thining about a month or so ago and she has been to a couple of doctors, but hasn’t had too many tests done yet. I’ve been trying to find doctors and information for her, but i don’t know if i’m just making it harder. she is having a hard time so i try to take over the logistical stuff so she doesn’t have to think about it.
I guess i’m posting this just to ask you if there is anything i can do to help her or make this less painful. I know i can’t know what she’s feeling, but thought I would reach out to see if any of you could tell me stories of someone helping you make the situation better. She is a very guarded person and she doesn’t let people in very easily. I know she must feel completely isolated and I just want her to know she isn’t. We have a very close family and everyone is here for her when she needs it.
Again, I apologize if I am making anyone feel violated. I just want to help my sister any way I can. Thanks for listening.
~Brooke
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Dear Brooke –
Thank you so much for writing. I think it is really wonderful that you are trying to take on an active role in helping your sister through this extremely difficult time. Hair loss is devastating for any woman, and your sister is not alone in this. I’m certain your support means more to her than you even realize, and I certainly don’t think you are making anything worse by being there for her. Just a couple questions, how old is your sister? Did she recently start or stop taking birth control pills, nuva ring or the patch or experienced any recent extreme weight loss?
You asked for stories of situations where someone was able to make the situation better for the woman experiencing hair loss. For myself, the biggest help was just having someone there to listen to me. My fiance was there from the beginning and he always listened and understood my emotional pain, sense of confusion and fear for the unknown future. He understood my real loss. Having my feelings validated was extremely important to me, it still is. Having someone who believed my words “I am losing my hair” and fully comprehending the impact that was having on me, was helpful to me. What do I mean by believing? By believing I mean not denying or trivializing my pain by telling me “oh you look fine, you’re not losing your hair.” If a woman is losing her hair, she knows it, end of story. On the flip side, words that helped me was when he told me ” I know you are losing your hair, but to the rest of the world you look like you have a full head of hair, so try and enjoy today.” It was very delicate wording. He validated my situation and then gave the best hair complement a women with hair loss could get 🙂 He wasn’t lying either, it was the truth. When we are engulfed in the early stages of hair loss we struggle with what our former image was…. a full head of hair. As it thins, nothing is good enough and the depression and sadness creeps to an all time high even when no one else can really tell. Now people can tell I’m losing me hair, but I’d say definitely for the first 5 years, my secret was known to only me. That didn’t prevent me from feeling ugly, sad and avoiding social gatherings, but it was something I wish I fully realized back then. Having my fiance tell me it “looked like I had a full head of hair” reminded me what I couldn’t remind myself, I was still OK.
Since your sister has only been losing her hair for about a month I’d say she has a lot of possibility points on her side for getting through this. It can be any number of things that is causing her hair to shed and may eventually rectify on its own or once the offending problem is found. Trying to figure out what causes women’s hair loss is going to require quite a bit of detective work on her part and that of the treating physician. It is really important to see a doctor who is very knowledgeable about the causes and treatments of women’s hair loss. Of course finding those few good doctors are like searching for needles in a hay stack, but they are out there. Where do you live (city/state) ? Perhaps I can try and ask around to see if anyone knows of a physician in your area who has been of some help to another women, or perhaps one of our readers will be able to point you to someone they’ve found helpful. Sometimes a total solution is beyond the control of a doctor, after all it is hair loss and it isn’t as cut and dry as treating a simple rash. But a good doctor knows the possible hair loss triggers and by taking a full history of your sister can determine if the cause lies in a medication she started or stopped taking recently. In my opinion a good doctor will also do the full bloodwork panel to rule out any possible causes there. He/she can also tell my examining the scalp whether or not the hair is miniturizing, which often points to the androgenetic alopecia (female pattern hair loss).
Brooke, your sister is at the infancy of losing her hair. The devastation is real, but she got a good chance this may just turn around and her hair loss will stop. Obviously I don’t know for sure, but plenty of women experience telogen effluvim (hair shedding) caused by a variety of factors and recover completely from it. If it is androgenetic alopecia then she has the option of working with her doctor to determine what will be the best course of treatment for her. It is my experience that androgenetic alopecia is a slow process and occurs steadily over time. The treatments help to postpone the process even further. Usually women with typical female pattern hair loss are not going to wake up with their hair gone. I’m 8 years in to my hair loss and just now am looking into the possibility of wearing hair. I wish I enjoyed the previous years more, and realized how much I did have back then instead of crying over what I was losing, I should have realized what I had.
Your sister is really lucky to have you, keep being supportive of her and listening to her. Try to envision what would be helpful to you if you where in her place and then do that for her. Although I’m pretty certain you already are.
~Y
{ 15 comments… read them below or add one }
Thank you so much for your heartfelt reply. It definitely helps to hear how your fiance helped you. She is definitely going through withdrawing from other people and avoiding social situations. I want to respect this, but I also want to encourage her to still be social every once in a while so your advice really helps.
We live in the Bay Area and I am trying to get her an appointment with Dr. Vera Price at UCSF, but she doesn’t have an available appointment until January. I keep reading about Dr. Price and that she is a great doctor on this subject. When I called her office the staff was beyond nice and supportive. In the meantime, I contacted Dr. Alexander Lewis who is based in Walnut Creek and she will be seeing him soon. Unfortunately, she just went to see an extremely insensitive doctor, Dr. Peter Panagotacos. He saw her for less than 5 mins and then sent her out the door with some topical medication. He told her it was hereditary without running any tests or asking her any questions. This really, really upset her more than anything so far. If anyone from the Bay Area is reading this, avoid this doctor. I read other reviews on him that said he did the same thing to other patients.
Anyway, thank you so much for responding and giving me advice on how to help her out. I really appreciate you taking the time to help me. I haven’t referred her to this website yet because I’m not sure if she is ready to connect with others yet. I think this is the best informational/support website I have found so far and I will definitely show it to her soon. Again, thank you so much.
Make sure your sister gets her thyroid and ferritin (iron) checked. I starting losing my hair over three months ago and was finally diagnosed with hypothyroidism about 6 weeks ago. I mentioned my hair loss at my yearly visit to the gynecologist because I thought I was losing it because of my birth control pills. My doctor decided to run tests for my thyroid. I have been on medication for 6 weeks and my hair loss hasn’t slowed down. (but I am still hoping) I am also low on iron and quit all birth control so that is probably not helping my hair situation. I would hope that your sister could go to her primary care physician and have tests run. Do some research on the internet about thyroid disorders and iron deficiencies and see if she has any other symptoms. So many things can cause hair loss. I had no idea until a few months ago. It can be overwhelming.
Good luck. I hope you figure out what is causing your sister’s hair loss. I never thought I would still have hair two months ago but I do…it is thinner but I still have some. I am just at the beginning of my hair loss battle.
Hi Brooke,
Direct your sister to this website. For starters it lets her know that she is not alone and that so many women are afflicted. Because she is not alone, information can be shared and maybe a solution is not too far off. Once a solution is found, I have absolutely no doubt that it will be posted on this very site.
Hi Brooke – I am so sorry to hear about your sisters awful experience with the doctor. I also had bad experiences myself early on visiting doctors and being dismissed altogether without believing what I was saying. I’ve heard about Vera Price from year 8 years ago when I was doing my own search for a doctor. I think she has written extensively on the subject and has been treating women with hair loss for quite some time. I’m not sure what her treatment protocol or diagnosis process is, and although I haven’t met her I think she knows what shes doing. I tried to get an appointment there myself when my hair loss first started, but like you’ve found out she was booked solid for months and months in advance. They referred to a woman doctor that Vera Price likes located in San Diego. I probably should have waited and made that appointment with her because the doctor that I was referred to did absolutely nothing for me, in fact it was one of the doctors that dismissed me completely. Can’t even remember her last name now, if memory serves me correct I think her first name was Julie. Anyways, keep that appointment with Dr. Price in January because January will eventually come around, it always does, and by then if you’ve had no luck with other doctors at least you know you have that appointment. When I was younger I used to get turned off by the months in advance waiting, I was a bit impatient back then, I suffered from “I need it now” complex 🙂 But now when I need an appointment for something and the only one is 4 months away, I make it anyways.
Please keep us updated with how your visit with Dr. Alexander Lewis goes. It may be worth it when you plan on seeing another doctor, to ask on the phone if he does blood work and if he is able to to tell whether or not the hair follicle is miniturizing, and also if he/she treats a lot of patients with women’s hair loss. If you want to push the envelope a little further you could even ask what his usual treatment is for women with hair loss. Hopefully they’ll tell you that they can’t tell you that because he hasn’t seen your sister yet. The reception staff could get a little annoyed with the 20 question drill but you could explain to them in advance that your sister already had a bad experience and you are really trying to help her. They should understand that.
I’m glad my words were of some help to you. When you think your sister is ready you can point her toward this site, a lot of find it helpful to read the stories of other women. Often women with hair loss feel very alone, but they are just the opposite. There are so many women experiencing the same feelings as your sister. But you know your sister best, and know when she’ll be ready.
I understand you wanting your sister to be social once in a while. It is a good thing for everyone. Don’t push her though, encourage her while being understanding. You mentioned your sister is about a month into losing her hair. With the general overall shedding women usually experience, I feel pretty confident that I can state that only being one month in, no one other than her and perhaps you can even tell she’s losing her hair. If I’m right tell her that you understand she’s losing hair but to everyone else on the street she meets no one will know. After all it is the truth is it not? She can still go out and have a good time, I know it’s hard for her to realize how much hair she actually still has today, and part of the depression comes from not knowing when it will stop, but she should enjoy the hair she has today.
One year after, Two years after I began losing me hair I thought I was destroyed it was so thin in comparison to what I had “before.” But you know what, it was still A LOT of hair, a lot thicker than a lot of women. This past couple years its taken a drastic turn for the worst, but for all the years prior, while I still suffered, I felt fairly confident that when I did my “hair routine” which took about an 1 hour – 1 1/2 hours (well worth it) that no one was “on” to me. My hair routine involves a thickening shampoo and conditioner, then the use of a defrizzer once I combed through the wet hair, then a thickening agent and then I’d use a giant roll brush and blowdryer to make my hair look fuller. After all of that I used a flat iron to smooth it out. I can’t tell you how many times I’ve actually gotten compliments on my hair from doing that trick for all those years. No one knew my suffering and pain. No one knew that not that long ago my hair was 10x thicker. I still had all sadness because it was hard for me to enjoy what I had when I kept losing it on a daily basis.
I just want to tell you all this so that you know that while I hope your sister’s hair loss journey is quite short and is rectified quickly, that even if it isn’t and continues to be something she has to treat and live with, that she can find ways to live with her hair loss and still feel good about herself. From personal experience the process for a women’s hair thinning is generally pretty slow and over time. We feel the pain of it because we know what we had before, and anything but that seems to pale in comparison. It took many years but I’ve learned to move on from that former image. I know I’ll never have that hair I once had before my hair loss, unless of course I buy it, which I may very well do. I am now okay with looking like I have naturally thin hair. My recent extreme upset was because even that is being taken away from me now since I’ve had non stop shedding for the last two years, without that 4 month break I’d usually get where my hair would regrow. But I think that is being exacerbated from something else entirely, and I’m working on correcting it…. and I’m still hopeful.
I hope your sister has better luck with Dr. Lewis, and finds the help she is looking for. There is life after hair loss, there are ways to make hair look fuller and even add hair if desired. I doubt anyone looks at Beyonce and says “gosh look at her purchased lace front wig” heck no, they think “look at the gorgeous girl and the gorgeous hair.”
Keep us updated. You are a good sister.
~Y
again, thank you to all of you for your words of support, information, experience, and wisdom. my sister was diagnosed with hypothyroid when she was about 17, but she no longer has it. she supposedly balanced out a few years ago. she was actually re-tested about a month ago when she noticed her thinning hair, but the test showed she was negative for any thyroid disorder and that her iron was normal. back in her teens, her blood test actually came back as a false negative and then she was tested again a couple of years later, which resulted in her hyperthyroid diagnosis at 17. i’m encouraging her to get tested again since she has a history of being misdiagnosed for it.
i just called dr. lewis’ office and they said he doesn’t do a standard blood test. the receptionist said she couldn’t really tell me any of his procedures because it depends on what he sees/hears when he visits with my sister. she was very nice and understanding and said that dr. lewis sees men and women all the time for hair loss. i really hope this one goes well because my sister is ready to stop seeing all these doctors and i feel like she hasn’t even scratched the surface. i feel like the doctors she’s seen so far haven’t done a very thorough job, weren’t specialized in dealing with hair loss or were completely insensitive.
i will definitely direct my sister to this website. i think all of the postings are helpful and i can see the strength this community provides to each other. even for me, you have all been so helpful and i really, really appreciate all of your responses. i will definitely keep you posted on what happens and, hopefully, you’ll see a posting from my sister at some point as well.
so my sister went to both dr. lewis and dr. price over the last week. her visit to dr. lewis rejuvenated her because he told her it was probably temporary and that it looked like hairs were growing back in. dr. lewis was really sensitive and thorough. she was in a great mood for about a week and then she went to go visit dr. price yesterday and got some unhappy news. dr. price told her she has female pattern baldness (i think that’s aga?). dr. price said her hair has been thinning for a while and it is just more noticeable now. she said her hair is still growing in, but the actual hairs are thinner. my sister said dr. price was sensitive, definitely knew her stuff, and was clinical and to the point, which she appreciated. she just went to dr. price yesterday and it’s definitely been hard on her. she didn’t want to talk to me about it last night so i don’t know what she’s feeling. i know she woke up emotionally and physically exhausted today.
i was really hoping that her visit to dr. price would confirm what dr. lewis had told her. she was like her old self again last week. now she’s dealing with the reality of dr. price’s diagnosis of aga and she’s saying, “it is what is and there’s nothing i can do. i just have to deal.” i really want to believe dr. lewis’s diagnosis, but my sister said dr. price was right and that her hair has been thinning for years. she’s now been to 4 dermos who have pretty much told her a variety of things.
i was trying to encourage her to go to this website, but she’s telling me it is too hard to visit hairloss sites. i told her to let me know if and when she is ready because i think this is a great source of strength for so many women.
i really want to help her and make everything ok, but i know this is her own struggle and that i can only be there to support her or pick her up when she’s down. hopefully she’ll be ready to visit this site and find strength and support from it.
again, thank you for all your kind words and advice and for letting me participate in the forum.
Hi Brooke,
tell your sister not to give up… has she been to a dermatologist yet? Going to a derm and getting a scalp biopsy was the only thing that actually helped me get a diagnosis, after it seemed like twenty million other doctors couldn’t help me. I think AGA is the easiest answer for doctors to tell us, but I don’t think we should take it as our hair’s death sentence if we are told this… get another third, forth, opinion. see an endo and a derm too! sounds like it could be a thyroid problem if she’s had issues with it in the past. good luck!!!
p.s.– admin, i sent an email to the address listed in the contact form… don’t know whether it worked or not but i wanted to share my story because i recently got a huge breakthrough in my hair battle…
Hi Brooke-
I’m so sorry to hear that your sister is having such a hard time right now. I think every woman on this blog can relate to the feelings she is going through. I know she is feeling that her fate is sealed and she will end up being a bald woman. Not true. I’ve lived with my hair loss for 8 years and while it has been a struggle I’ve learned to accept a lot more than I ever thought I was capable of. I do have very thin hair now that has rapidly progressed due to what I feel was a totally separate issue causing the excess telogen effluvium these last 2 years. But still with some effort on my part I go out into the world even with the very thin hair I have now and get by. Your sister has so much more hair now than she even realizes, a diagnosis of androgenetic alopecia doesn’t mean your hair will all fall out tomorrow. It is for the most part a slow process that takes place over time. Like Dr. Price mentioned, the hair grows back after it has been shed but just grows in thinner. Hair loss treatments are aimed at slowing and even reversing this miniturization process down even further and keeping more of the hairs in an anagen phase for a long period of time. I understand where your sister is emotionally and honestly you are already doing everything you can for you.
It takes a long time to gain what I call “hair loss maturity” where it just becomes part of your daily routine and you learn to accept your current state of hair. Of course it still bothers me, and I still cry about it at times but I am able to deal with it a whole lot better than I did when I first started losing my hair, even through I have tremendously thinner hair. If you would have shown me a picture of myself today, 8 years ago and said this is what you will look like after 8 years of hair loss I would have totally freaked out and probably locked myself away. But that is only because I was use to having so much hair and wasn’t willing to give up or accept myself any other way. I didn’t realize that you can get by with thinner hair, plenty of women have naturally thin hair and have never lost a hair in their life. I had to learn to not hold on so tight and to be willing to let go… let go of the image and pictures of me with ridiculously thick hair and accept the new me with thin hair. I wrote this in a past post titled “At What Point Do We Let Go?” :
“When I first started losing my hair 8 years ago, I used to pray and pray that I would recover completely from whatever ailment or messed up hormone was causing me to lose my hair and that it would all grow back. As the years went by my attitude changed and I started pray that I could just keep what I had and have it stop falling out. More years past, and I started pray that I could be given strength to mentally deal with my hair loss and move on. That is where I am today. Oh course I want my hair back, I always keep hope that things may turn around, but ultimately I really want to learn how to accept myself as I am, today.”
I think that pretty much sums of the evolution of the way my attitude changed after living with hair loss for so many years. I want your sister to know that her diagnosis of having androgenetic alopecia, is just that a diagnosis. It doesn’t imply that she will be a bald woman, it doesn’t imply that she’ll lose all her hair this week, next month or next year. It is a condition a lot of women life with. Some women are naturally more optimistic and better at dealing than others, that wouldn’t have been me. I took it HARD and I missed out on a lot of my 20’s (I’m 29) because of it. It was needless too, looking back I had so much more hair than I ever realized even when I was in the deepest throws of shedding. I don’t want your sister to be like I was. I want her to enjoy the hair she has TODAY. Hair loss is something we have to life with and deal with, but we get a vote in our attitude and how we view our situation. We can be bitter, which I was for many years, or we can realize that all we can do is the best we can with what we have today, and when that is no longer enough we can choose to add hair to our own or wear a very natural undetectable human hair wig.
Life isn’t over. It’s only beginning. There is no doubt that having hair loss has made me a better person. I’m more understanding, more compassionate and more accepting, I work on trying to appreciate the things I am very fortunate to have today, things other people don’t. I am more patient as well, waiting for your hair get some regrowth after a shed is a slow process. I realize none of this will be of real help to your sister now because it probably all seems so sudden and definite for her. But she’ll get better, she has a wonderful sister by her side 🙂
Give your sister a big hug, hold her tight. Let her cry on your shoulder. Just be there. Unfortunately I don’t think there is anything you can really say to make her feel better. Just listen. I also understand your sister not wanting to visit the site, sometimes it just too overwhelming. The site will be here when your sister is ready and I look forward to hearing from her and having the opportunity to write to her directly.
~Y
wow, thank you so much. i wish i could show this to her, but i think she just isn’t ready. maybe when i think she is i’ll show it to her. she is definitely have a hard time with it and cries every night about being bald one day. she is dealing with the thoughts that she has no control over it, there is no cure and her hair will just keep falling out. i just wish i could take the pain away. it is encouraging to hear how you emotionally processed your hair loss through the last eight years.
i have a couple of questions… do you know about anyone trying eastern or natural medicine or visiting an acupuncturist or eastern healer? also, she wasn’t given a prescription for spiro or the pill… is this something we should be looking into?
i know i keep saying this, but thank you so much for everything. since my sister doesn’t want to visit the site i feel like i should be her voice just so we get all the information we can. thanks again.
Is there a scale or scalp test? Is it part of the usual procedure, do you request it and has it proved helpful to anyone…
Hi Brooke!
You are a great sister for trying to take care of your big sister. I am in the advanced stages of hair loss. My hair was always thin but became even more thin as I got older (I am 46 years old). I am SO devastated by this. I’m trying to stay as positive as I can but it is sooo amazingly hard to do when I comb my hair and see so much of it coming out. But as I said, I’m trying tos tay positive. I’m not going down without a fight and tell your sister to do the same. Ihave scarring alopecia. That for me means, that once the hair falls out, it doesn’t grow back because the hair follicles are scarring. I was told that my immune system (a virus) somehow thinks that the oils and stuff that makes the hair follicles healthy and grown is bad and it kills them off. Ugh! So she has given me and antibiotic (100mg) that take twice a day and a oil for my scalp which is peanut oil and steroids. I must say in the front of my head, there is actually hair starting to grow back. I can see the bald spots starting to fill in a little. I’m hoping that this antibiotic will kill off the virus and I can save what little hair I have left. If you are in the New York area, the doctor that I am seeing is at Columbia Presbyterian Hospial in Manhattan. She is a specialist in this area and is highly recommended. Her name is Dr. Michelle Hanjani and she has an office on East 60th Street and she’s also at the hospital itself. Tell your sister she ahs to pull it together so she can try and at least save what hair she has left. At least if nothing works she knows that she didn’t go down without a fight. It is very devastating. I think I cried for three days and then I realized if I wanted to at least save my hair I had to somehow pull it together and get proactive. Also, for her sake tell her to pray. Pray long and hard and ask God to help her through this. I wish her all the luck!
Take care.
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