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Women’s Hair Loss Stories

“Brave, Bald and Beautiful”

Have you seen this recent segment on The Doctors? Absolutely exquisite!

How Will Alopecia Universalis Affect My Life?

Her Hair Loss Help has an outstanding Discussion Forum specifically for women with alopecia and other forms of hair lossThis is a common question, particularly for children, teens, and young adults who are beginning to form lifelong goals and who may live with the effects of alopecia universalis for many years. The comforting news is that alopecia universalis is not a painful disease and does not make people feel sick physically. It is not contagious, and people who have the disease are generally healthy otherwise. It does not reduce life expectancy and it should not interfere with the ability to achieve such life goals as going to school, working, marrying, raising a family, playing sports, and exercising.

The emotional aspects of living with hair loss, however, can be challenging. Many people cope by learning as much as they can about the disease; speaking with others who are facing the same problem; and, if necessary, seeking counseling to help build a positive self-image. HerHairLossHelp.com offers a wonderful Online Community of women who suffer from alopecia and other hair loss afflictions that can help women who suffer from hair loss cope with their everyday activities. Having a community of women, who are all going through various stages of hair loss, offers other women an empathetic person to turn to when dealing with emotional difficulties because of their hair loss. Visit the HerHairLossHelp.com Forum to learn more!

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Life doesn't end with alopecia - Many women are successful in combating the self esteem issues of not having hair

Angelica Galindez was diagnosed with alopecia when she was 12 years old. But now, seven years later, the 19-year-old from San Francisco is the picture of confidence. She proved that on Saturday when she ditched her wig to compete in the Miss Philippines Earth USA beauty pageant and took home one of six victory crowns.  Read more at Huffington Post

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Hypothyroidism and Thyroid Hair Loss in Women

Claire, one of our lovely forum members, put together this incredibly informative post on hypothyroidism, TSH levels and doctors…

Just a little background. I was diagnosed with Hypothyroid in June of 2005. After over a year of fighting with doctors I finally reached a TSH level below 3.0 in August of 2006.

I am not a doctor, nor a health professional. I’ve read, experimented, and suffered through this thyroid maze. As I would say if you came to me with someone else information, please take everything I say about my treatment with a grain of salt. What works for me may not work for you, but I feel it’s important to give you an idea of what can be done.

The reason I had so much trouble with doctors is that many of them have been out of med school longer than the newest findings.

As of 2012 the AACE (American Association of Clinical Endocrinologists) published new findings on the correct thyroid levels in most individuals. No longer is the range between .5 and 5.0 but a smaller range of .3 to 3.0

AACE guidelines for correct thyroid levels in women to help find solutions to hair lossThe full AACE Guidelines can be viewed by clicking this link.

What does this mean? That many many doctors are under treating their patients. Even more frightening is that there are doctors who have not been updated on thyroid function for an even longer period of time and think that a TSH level under 10 is appropriate. Luckily those doctors are few and far between. What this teaches us is that educating oneself on ones health matters is most important. We assume that doctors are knowledgable about all health matters. The truth is, scientists and specialists come to new findings every year and general practitioners are the last to know. Doctors are well educated on health matters, unfortunately, they are well educated within the time frame in which they went to medical school. This leaves several years of updated information that they have not had access too. Even more frightening is that many of them dismiss new findings if such information is brought to them by a patient.

Synthroid tablets are a common treatment option for women who suffer from thyroid problems and hair lossIf you are hypothyroid and still suffering with symptoms and your doctor is telling you that your thyroid is functioning normally it is time to start taking control of your situation.

First, obtain a copy of your most recent lab work. Find out what your thyroid levels really are. Second approach your doctor about what issues you are having. If he is unwilling to listen, then you have a couple of options.
A. you can take in a copy of the AACE’s newest research {http://online.liebertpub.com/doi/abs/10.1089/thy.2012.0205?journalCode=thy}, a copy of a checklist of your symptoms {http://thyroid.about.com/cs/hypothyroidism/a/checklist.htm}

If you have any other symptoms that seem abnormal to you, but are not listed, please list them as well. Recently, I’ve discovered that overnight leg cramps is also a symptom of hypothyroid.

B. you can switch doctors.

You may have to do B. anyway, if your doctor is unwilling to work with you. The best thing you can do is request to be sent to an endocrinologist. If your doctor is unwilling to refer you, you are not without hope. Most insurance companies have patient outreach programs. Obtain a copy of your records, including blood tests (you have the RIGHT, by law to get copies of your medical records), a copy of the AACE’s findings, a list of ongoing symptoms and a letter requesting referral to see a specialist. It is possible to go over your doctor’s head in order to do this. You can also switch doctors and request this of your newest doctor. Be warned, even some endocrinologists go by an older TSH scale. If you find this to be so, request a second opinion.

Most important, do not think that the doctor knows more than you. You, and only you truly knows how you feel. Do not worry about offending your doctor. As it is, your doctor doesn’t seem to worry about offending you. You are the boss in this situation. He works for you, if he is unwilling to do his job, then you’ve every right to hire someone else.

Once you find someone willing to work with you ( and if you already have, thank your lucky stars) do not expect your symptoms to alleviate as soon as you start a new dosage. Do not expect your symptoms to alleviate as soon as you reach a healthy TSH level. It’s going to take some time for your body to begin to heal itself. However, you will notice some changes within weeks.

Anatomy image of the thyroid gland courtesy of UpToDate.com

Anatomy image of the thyroid gland courtesy of UpToDate.com

The Thyroid also changes with time. As you begin to reach a healthier TSH level things may plateau and you may have to adjust your meds as needed. It’s not uncommon to reach a healthy TSH level and a few weeks later begin to feel bad. It’s important that within the first year of reaching a healthy TSH goal to be checked every 3 months. After that it’s important to be tested twice a year. Some doctors say only once a year is enough, this is not true. Thyroid levels change with temperature changes. One of the best ideas is to check your thyroid levels a few weeks into the first cold snap of winter and within the first few weeks of summer heat. Many thyroid patients find they need to adjust their dose with the extreme temperatures of both seasons. Cold weather slows thyroid function, hot weather tends to call for less thyroid supplement.

It is also not uncommon for a short period of time in which you have a few of the sensations associated with HypERthyroid upon starting a new dosage. I’ve found the best way to avoid this is to titer up. My doctor is willing to work with me on this. This consists of me cutting pills and slowly adding till I reach my newest dosage level. Thyroid hormone takes time to build within the system. This is why titering up works in many cases. This is also why you do not retest your thyroid till 6-8 weeks after beginning a new dose. If you decide to titer up, do not retest till the 6-8 week mark after you reach your INTENDED dosage. My pm box is always open if you have additional questions about this. It is important to discuss this with your doctor as well. Do not raise your dosage above what he recommends till you’ve had your TSH checked. Then be sure to inform him of anything you intend to do, so that you may have another test lined up.

There is no magic number. Not when it comes to TSH, not when it comes to dosage. The ideal setting is for you and your doctor to work together by using both blood work and how you feel.

When taking thyroid medications it’s important to understand a couple of things. First, any food or vitamins taken with the thyroid med will change the absorption rate of the hormone. Your best bet is to take the thyroid med first thing in the morning and an hour before and after eating. So, no food for an hour on either side of taking your med. Even more important is delaying the taking of vitamins. Especially iron and calcium. Both of those can have an effect on the way your body absorbs the thyroid hormone. It is best to take your vitamins either in the middle of the day (2-3 hours) after your hormone or at night (6-8 hours) before.

If you are the type that has to eat first thing in the morning then know that you must follow the pattern every day. If you eat less than an hour after taking your thyroid hormone then it is important to follow this habit daily. It is also important to stick to a similar breakfast food. For instance if you drink milk, it will have an effect on how your body absorbs the hormone, so it’s important to have dairy at the same time, every day as to keep the hormone absorption similar.

“Personally, I think hair is overrated.”

Story from a woman who has alopecia universalis:

I’m 40 years old and have had alopecia for more than 20 years. Up until the last year, my hair would grow in spots. I decided last year I was tired of the wigs and showed the world my bald head with a little peach fuzz. I have since lost even the peach fuzz with no hair in sight. I hope they come up with a treatment that works, but if not, I have come to grips with the fact that I may never have a full head of hair again. Personally, I think hair is overrated.

Thank you for sharing your story!

Information on Telogen Effluvium & Tips on How to Deal with Hair Loss

Her Hair Loss Help has an outstanding Discussion Forum specifically for women with telogen effluvium and other forms of hair lossTelogen effluvium (TE) is the second most common form of hair loss most dermatologists see. When a woman is actively shedding hair during an effluvium (meaning ‘outflow’), it can be exasperating, depressing, and scary.

Sometimes a TE shed, as our forum members frequently call their thinning hair loss, can last for months or even years. Occasionally, it will appear as if the shedding occurs along with your menstrual cycle (cyclical shedding). Women with TE never completely lose all their scalp hair, but the hair can be noticeably thin in severe cases. Whatever form of hair loss your telogen effluvium takes, it is fully reversible.

Things that can help minimize a telogen effluvium shed (or hair thinning):

  • Sometimes skipping a shampoo for a day will make it seem as though more hair comes out the next time you wash. Many of our forum members say it helps to shampoo your hair every day.
  • Use an apple cider vinegar hair rinse once per week.
  • Blot your hair dry with a towel instead of vigorously rubbing your hair.
  • Apply a light conditioning cream to your hair after towel drying to protect it from unnecessary breakage.

Things that can help boost volume and give the illusion of thick hair:

  • Visit a professional hair salon professional in your area and request a cut that will give your hair more bounce and move lightly (generally just below the chin and lightly touching the shoulders). Highlights and lowlights using foil can also give the illusion of thicker, fuller hair.
  • Use a gentle hair care product that has thickening properties. Some of our forum members’ favorites include: Tigi Bedhead Superstar Sulfate Free Thickening Line, WEN Lavender Conditioning Cleanser, WEN Sweet Almond Conditioning Cleanser, Aquage Sulfate Free Shampoos and Conditioners, and Aquage Thickening Style Gel.
  • Loosely piling your hair up on top of your head and then piecing random pieces of hair with a good hair texturizer makes thinning hair look healthy and thick.

Supplements
Supplements can be a controversial topic in matters of hair loss. Many women who have recovered from telogen effluvium agree that you should steer clear of unnecessary supplements unless you have had blood tests to diagnose any vitamin deficiencies that can contribute to your hair loss. For example, if you are iron deficient or anemic, you should take a doctor recommended amount of iron supplements. Iron deficiency is known to cause or aggravate hair loss.

It’s important to remember that one supplement that worked for one woman may not work for you. Our bodies are unique and unnecessary supplements and medicines may do more harm than good.

I’m 32 and I’ve had 4 battles with Alopecia Areata.

Story from a woman who has battled alopecia areata resulting from severe trauma and/or stress:

I’m 32 and I’ve had 4 battles with Alopecia Areata. Every time something major happens I begin to start loosing a patch of hair. First, when I made a huge move across country and left all my family, a spot started. (pretty scary) since it was the first time. The second time, I was in some financial problems, and again it started. The second times, I had deaths in the family a few years apart, and again, the patches came up. It’s a horrible feeling to have a full head of hair, and then all the sudden a small little patch starts and you start praying that it stops or doesn’t get that big. Currently, I have two huge spots on the back of my head that barely have any fuzz at all. In fact, some of the grey hairs stayed, and the brown didn’t. Weird. I’m not on any medications since the other times it grew back fairly quickly (6-9 months), but I think I’m going to find something this time since their much bigger than before.

Thank you for sharing your story!

AGA – Photo image of onset

Image photo of the onset of Androgenetic Alopecia in a female courtesy of www.aafp.org

Image photo of the onset of Androgenetic Alopecia in a female courtesy of www.aafp.org

Bald Girls Do Lunch: News Clip

Bald Girls Do Lunch on KSTU TV in Salt Lake City, Utah.

One Life: Gail Porter Laid Bare {video clip}

In this powerful clip from the BBC documentary “One Life: Gail Porter Laid Bare,” Gail prepares to meet Michelle Chapman.

Video of Cosmetic Application on female alopecian

A female alopecian named Chrissy has her eyelashes and eyebrows done by a professional makeup artist.

TE vs. CTE

Just wanted to summarize some research I’ve done over the past couple of years… for the benefit of my fellow TE shedders… Here goes…

Classic TE lasts roughly 3-6 months and has a very specific and temporary trigger… e.g. childbirth, major surgery, illness

CTE is basically TE lasting longer than 6 months and the insult or trigger is sort of a mystery…

Based upon my research… CTE in women can usually be attributed to a hormonal imbalance (e.g. too much estrogen or not enough) or other metabolic disturbance (e.g. thyroid) and also iron deficiency…

now… hormonal imbalances / metabolic disorders are pretty common with us chicks in this day and age… and there’s many reasons for this… too many to enumerate… but this link should help explain part of the problem:
http://womenlivingnaturally.com/articlepage.php?id=73

As far as iron deficiency… if you are menstruating and don’t eat alot of red meat or tons of green leafy veggies… chances are you are iron deficient on some level… as iron is stored in the blood… and blood loss = iron loss.

Anyway… hope this helps!!!
~ venus71, HHLH Forum Member

Sharon Blynn: Beautiful Things {commercial}

Sharon Blynn of www.baldisbeautiful.org is a survivor of ovarian cancer. In this commercial for Bristol-Myers Squibb, she talks beautiful things. Sharon, you are beautiful!

melanie

HHLH Forum Member has head tattoed on Miami Ink

One of our beautiful forum members, JoyceStock recently had her head tattooed on Miami Ink. It’s a lovely butterfly! Thank you, Joyce, for being such an inspiration!

melanie

How can I cope with the effects of AGA?


Living with hair loss can be hard, especially in a culture that views hair as a sign of youth and good health. Even so, most people with alopecia areata are well-adjusted, contented people living full lives.

The key to coping is valuing yourself for who you are, not for how much hair you have or don’t have. Many people learning to cope with alopecia areata find it helpful to talk with other people who are dealing with the same problems. More than four million people nationwide have this disease at some point in their lives, so you are not alone. We have a number of women who live with alopecias of all kinds a daily basis in our Online Community who can help through message boards and support groups.

Another way to cope with the disease is to minimize its effects on your appearance. A wig or hairpiece can look natural and stylish. For small patches of hair loss, a hair-colored powder, cream, or crayon applied to the scalp can make hair loss less obvious by eliminating the contrast between the hair and the scalp. Skillfully applied eyebrow pencil can mask missing eyebrows.

For women, attractive scarves can hide patchy hair loss; jewelry and clothing can distract attention from patchy hair; and proper makeup can camouflage the effects of lost facial hair. If you would like to learn more about camouflaging the cosmetic aspects of androgenetic alopecia, ask your doctor or members of your local support group to recommend a cosmetologist who specializes in working with people whose appearance is affected by medical conditions.

How will androgenetic alopecia affect my life?

The comforting news is that androgenetic alopecia is not a painful disease and does not make people feel sick physically. It is not contagious, and people who have the disease are generally healthy otherwise. It does not reduce life expectancy and it should not interfere with the ability to achieve such life goals as going to school, working, marrying, raising a family, playing sports, and exercising.

The emotional aspects of living with hair loss, however, can be challenging. Many people cope by learning as much as they can about the disease; speaking with others who are facing the same problem; and, if necessary, seeking counseling to help build a positive self-image. HerHairLossHelp.com offers a wonderful Online Community of women who suffer from alopecia and other hair loss afflictions that can help women who suffer from hair loss cope with their everyday activities. Having a community of women, who are all going through various stages of hair loss, offers other women an empathetic person to turn to when dealing with emotional difficulties because of their hair loss. Visit the HerHairLossHelp.com Forum to learn more!