Wednesday, 11 October 2017

When Your Fat-Shaming Meme is a Flop

WTF are you doingAs a fat woman on the internet I’m well aware that the first rule of being a fat woman on the internet is “Don’t read the comments. Never, ever read the comments.”

This is, of course, because the comments are typically a cesspool of fatphobia and bullshit. Well, not this time. This time, the comments are a virtual treasure trove of smackdown gold. (I’m seeing this more and more and I couldn’t be happier about it!) This time a dude took time out of his life to attempt to create a fat-shaming meme, and then it all went so very wrong.

You can read the rest of the piece here!

Upcoming Talk

Hey, are you in or near Lexington, Kentucky?  Because I’m going to be.  I’ll be speaking in Lexington on the 25th. Click here for all the details. (I’m also open to doing other talks while I’m there so if you know a group that would like to host a talk or dance class, or a class that would like a guest lecturer, e-mail me at ragen at danceswithfat dot org!)

Last Chance for Fat Activism Conference!

Did you miss the fourth annual Fat Activism Conference?  Good news – for two weeks you can still get access to all the materials (recordings, transcripts, and handouts) for listening, reading and downloading!

Click Here to Register for the Fat Activism Conference

If you enjoy this blog, consider becoming a member or making a contribution.

Like this blog?  Here’s more cool stuff:

Become a Member! For ten bucks a month you can support fat activism and get deals from size positive businesses as a thank you.  Click here for details

Book and Dance Class Sale!  I’m on a journey to complete an IRONMAN triathlon, and I’m having a sale on all my books, DVDs, and digital downloads to help pay for it. You get books and dance classes, I get spandex clothes and bike parts. Everybody wins! If you want, you can check it out here!

Book Me!  I’d love to speak to your organization. You can get more information here or just e-mail me at ragen at danceswithfat dot org!

If you are uncomfortable with my selling things on this site, you are invited to check out this post.

 

 



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Tuesday, 10 October 2017

Lying to Doctors for Healthcare

Bad DoctorI talk a lot on this blog about how to advocate for yourself with healthcare providers – facts and figures that you can use, and phrases that help etc.  I want to make sure I’m clear that fat people shouldn’t have to do any of that, and that the ability to do it is a privilege and a luxury that not everyone has.

I talked about this recently on Christy Harrison’s fabulous podcast Food Psych. I have a lot of privileges that allow me to stand up to doctors – I’m white, cis, currently able-bodied and neurotypical, currently have “good numbers,” and am typically assumed to be hetero which, because of racism, transphobia, ableism, healthism, and homophobia gives me a ton of privilege. Add to that,  I good memory for facts and figures (if not for names and dates!) an education in research and statistics, a lot of doctors to choose from (thanks Obamacare!) and the ability in these situations to be furious and remain calm and logical (which, because so many doctors have screwed up ideas of which patients should be listened to and respected, gives me a better chance of being listened to and respected.) That’s a lot of luck of the draw stuff that helps me out.

So a question I get a lot, especially after my recent post about self-advocacy at the doctor’s office, is what about people who don’t have this as an option. It can happen for lots of reasons – from a lack of choice of doctors, to not being a physical mental space where someone can self-advocate (and, again, there’s nothing wrong with that since we should have to prepare for a doctor’s appointment like we’re on the frickin’ debate team.)

First of all (yes, I’m going to say this again) remember that you shouldn’t be in this position in the first place – doctors should not try to prescribe dieting at all since the most common outcome is weight regain, with a majority of people gaining more than they lost – so weight loss does not meet the criteria for ethical, evidence-based medicine. Basically, your doctor is committing malpractice and you’re having to overlook it because of your circumstances, and that sucks, and it’s not your fault.

I want to dismantle medical fatphobia, but I also want the people who are being harmed and killed by medical fatphobia to get help now.  Knowing that, each person needs to decide their own personal boundaries, including taking into account that there may be downsides to misleading your healthcare professional  – it’s sad that sometimes we have to take those risks just to get a chance at decent healthcare, but that’s what happens when we have healthcare in a fatphobic world.

The most common situation that I hear about happens when a doctor is trying to prescribe weight loss for a health issue for which a thin person would get an evidence-based intervention (which is basically every health issue that exists.) Consider asking a question like “Out of curiosity, what is the treatment for thin people who get this health issue?” or “If I lose the weight and still have the health issue, what would my options be at that point?”

Once you’ve established that there is an actual treatment protocol besides attempting to manipulate your size (and there always is,) then you can request a simultaneous treatment, for example “That makes sense. Since dieting can be so unpredictable – especially for people like me with a life long history of yo-yo dieting, and can take a long time regardless, I would like to start the treatment that you just mentioned, and I’ll try weight loss as well, that way we’re doing everything we can for my health.” Then you can do the actual treatment and skip the weight loss. When you come back ask the doctor to focus on the actual health issue and say you’ll keep trying with weight loss.

When the doctor is asking you to consider amputating part of your stomach the stakes get a lot higher.  I once had a doctor tell me that he would withhold treatment unless I went to a stomach amputation recruitment rally (though I’m pretty sure they called it something else.) I refused and argued, but I could just as easily have said “sure, I’ll go.” It’s not like he could have un-set my broken toe if I never went (and unless I was actively protesting it there’s not way I would.)

Sadly in some cases doctors are insisting on stomach amputation (also known as “weight loss surgery”) as a requirement before a fat person can get other medical treatment.  This could not be more fucked up.  First of all, I can’t believe how many people I’ve heard from whose doctor said they couldn’t do a routine surgery because it they claim surgery is too dangerous at their size, and then recommend… you guessed it, stomach amputation surgery.

While people are allowed to choose to have their stomach (or any other body part as far as I’m concerned) amputated, I want to make it very clear that if you are going to choose WLS, then the thing you are trying to fix had better be worth dying for, because dying is a distinct possibility. It’s also a possibility that you’ll be one of the many, many people who has such horrible lifelong side effects that they would do anything to take back the surgery.  To me, a doctor requiring that I amputate my stomach before they’ll treat an actual health issue is time to pull out all the stops  – look for a doctor out of network (or the state, or the country) and try to find a way to fund it, file a medical ethics complaint, do whatever I can do because that is a line that I will not cross.

I’m for healthcare without bigotry and from a Health at Every Size paradigm. Until that’s a reality, I’m for people doing whatever they have to do to get the care they need within their own personal boundaries.

Upcoming Talk

Hey, are you in or near Lexington, Kentucky?  Because I’m going to be.  I’ll be speaking in Lexington on the 25th. Click here for all the details. (I’m also open to doing other talks while I’m there so if you know a group that would like to host a talk or dance class, or a class that would like a guest lecturer, e-mail me at ragen at danceswithfat dot org!)

Did you miss the fourth annual Fat Activism Conference?  Good news – for two weeks you can still get access to all the materials (recordings, transcripts, and handouts) for listening, reading and downloading!

Click Here to Register for the Fat Activism Conference

If you enjoy this blog, consider becoming a member or making a contribution.

Like this blog?  Here’s more cool stuff:

Become a Member! For ten bucks a month you can support fat activism and get deals from size positive businesses as a thank you.  Click here for details

Book and Dance Class Sale!  I’m on a journey to complete an IRONMAN triathlon, and I’m having a sale on all my books, DVDs, and digital downloads to help pay for it. You get books and dance classes, I get spandex clothes and bike parts. Everybody wins! If you want, you can check it out here!

Book Me!  I’d love to speak to your organization. You can get more information here or just e-mail me at ragen at danceswithfat dot org!

If you are uncomfortable with my selling things on this site, you are invited to check out this post.



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Sunday, 8 October 2017

Schrodinger’s Closet and the Fuck-It Model of Coming Out

One of the ways in which my experience of being bisexual is different and sometimes weird is that I was already married to a guy by the time I realized I was bi.  This is, of course, more common than you’d think. There are lots of people who figure out their sexuality in their twenties or thirties, or later. And, just because of the size of the dating pool, an awful lot of bi people will end up with someone who is not their gender, having people sort of assume they’re straight.

This makes the whole concept of coming out a little weird for me.  It shouldn’t feel like oversharing to say, “By the way, I’m bi,” but it often does.  Spending more time in LGBTQ spaces has helped with that.  When people are going around the room giving introductions and how they identify is a standard part of that, it’s a lot easier to stand up and say I’m bi.  The fact that I bought a shirt that says “Bisexual and Still Not Into You” also helps.

I’ve reached the point, finally, where pretty much everyone who I feel *needs* to know that I’m bi knows.  My husband knows and is supportive. Ditto for my brother.  My mom knows, and is mostly confused, and we will probably never speak of it again.  A few friends know, especially those who also fall somewhere in the queer universe. My dad doesn’t know, and while that’s sometimes a source of stress, I’ve pretty much accepted it as the status quo.  When I told my mom, she made it a point to keep it from my dad, so I suspect that he’d be weirder about it than she was.

The concept of the closet, at least for me, is complicated. Most of the time I go about my daily life without actually caring whether people know I’m bi, or feeling like I’m hiding something, or worrying what will happen if someone finds out. Even at my pretty conservative workplace, I have at least one non-straight coworker, and people manage to not be assholes to her.

And yet, every once in a while, it hits me.  It’s basically Schrodinger’s closet—simultaneously a closet and an actual room until a thing happens that makes the distinction clear.  Like, for example, the aforementioned t-shirt.  I had ordered it for Pride, but it didn’t arrive in time.  So, when I got it, I wanted to show it off.  I put it on, I agonized a bit about whether some stranger in my pretty red community would give me grief over it, and I ended up changing into something else.  Oh, hey, is that a hanger pressed into my back, and a door a couple inches from my nose?  And, wow, it smells kind of musty in here all of a sudden, doesn’t it?

So, between being pretty much sick of angsting over who to tell how and when and being in a position where I really don’t *want* to be out at work, but it’s not likely to torpedo my career, I’ve come up with the “fuck-it” approach to coming out.  I’m not going to censor myself, or bring it up.  I’m not wearing the bi shirt to the company picnic, but I’m going to wear it to the grocery store, and if I run into a coworker, oh, well.  Likewise, I’m not planning any more big conversations where I tell people I’m bi and try to phrase it perfectly so they don’t freak out on me.  If it comes up in passing, then I’ll roll with it and treat it as the non-issue that it really should be. If someone else wants to make a big deal out of it, that can be their problem.

That’s the theory anyway.  We’ll see how it goes.

 




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Friday, 6 October 2017

When Fat Activism is Poetry in Motion

2017 FAC StickerI think this may be the longest I’ve gone without blogging since I started!  Everything is fine, just super busy (and many thanks to those of you who checked in on me!) One of the big things I’ve been working on is the fourth annual Fat Activism Conference. I am so very excited about this year’s conference, we have an extraordinary group of speakers and sponsored, coordinated by an amazing Organizing Team. I’m doing all the last minute things this morning but I wanted to take a moment and share a preview of something awesome that is new for this year – the Spoken World Collective – where you’ll hear the work of amazing fat positive poets and spoken word artists!

Once the conference is over I’m looking forward to blogging regularly again! For now, the conference starts today and there’s still time to register. It’s online so you can listen live on your computer or phone, and you get recordings and transcripts so you can also listen and read on your own schedule. Click here to register!

Enjoy these amazing poets and spoken word artists:



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Sunday, 1 October 2017

Babies and Sleep

I really like to read advice columns, and Carolyn Hax is a good one.  But, there are always going to be answers that I think miss something important.  This is one of those times.  The letter-writer asked if it was possible to have a baby and still get a reasonable amount of sleep. She has “always needed a good night’s sleep to function, at least eight hours but ideally 10.” She hears parents talking about sleep deprivation and is terrified, and hopes maybe they’re exaggerating.  After all, how would they work or care for their kids on no sleep?

Carolyn’s response provides a useful explanation of the sleep habits of babies, and is meant to serve as a wake-up call that, yes, you will be horribly sleep-deprived, but you can deal.

The thing I think she’s missing is that the letter-writer needs an above-average amount of sleep to function.  So, my approach to the letter-writer is more like, “Hi, are you me?”  I also have always needed lots of sleep.  When I’d pull late nights in college, I’d feel like shit the entire next day and maybe get a nap.  Other people seemed to be okay.  And that was when I was 15 years younger, with a functional thyroid.

Today, with several chronic illnesses that drag my energy level down directly *and* contraindicate caffeine, I know I need way more sleep than most people. I’ve given up hobbies because they required too much night driving and I didn’t want to fall asleep on the road. I accept that if I have a late night out, I’m going to feel like crap for a couple days after. And, yeah, the idea of waking up every two hours with a screaming infant terrifies me too.

So, my advice to the letter-writer is a little different.  First, you are probably not going to have multiple sleepless nights in a row, unless something is wrong.  (If the baby has colic, which is a thing that happens, all bets are off.)  Second, you’re not likely to get 8 or ten most nights either, and it’s totally reasonable to be scared about a situation that leaves you unable to function.  When I was trying to get pregnant, I had similar worries.

Obviously, nobody can diagnose anybody with anything through the internet, but needing 8-10 hours of sleep for minimal functionality might be a sign of something medical.  I would define minimal functionality as being able to do your job well, meet the needs of the baby, and drive safely.  Feeling crappy and yawning a lot is one thing; falling asleep at the wheel is another. So, if going under eight hours puts you into “dangerously sleep-deprived” territory, it might be worth seeing a doctor and getting your thyroid, vitamin D levels, and whatnot checked out.

Another thing that might be useful, if you’ve been diligent about getting enough sleep currently, is a little experiment to find out how sleep deprivation affects you. Unfortunately, this only works if you have a free weekend with nothing critical to accomplish during it, and it requires deliberately making yourself feel like crap.  On a Friday night, set the alarm to go off two hours after you go to bed.  When it goes off, get up, putter around for 10 or 20 minutes, go back to bed, and set the alarm for another two hours. Continue through the night and get up at your normal time.  That’s your worst-case scenario, with a brand-new baby.

On Saturday, how do you feel?  Terrible, right?  No surprise there.  But how bad is it?  Can you drink some coffee and shamble through your day?  Would you be safe to drive? Can you accomplish simple household tasks? Granted, if you have a newborn, the housework is less important, but if you’re not awake enough to load the dishwasher, you’re probably not awake enough to make up a bottle or change a diaper. Again, remember this is the brand-new baby level. The experiment isn’t to determine whether you could keep the house clean, work full time, and take care of the baby.  It’s just to determine whether you can safely pull off the bare minimum in the beginning, while you’re home with the baby.

If you can, then that’s good.  You’ve learned that you can handle some level of sleep deprivation and still function.  And remember, you and your husband can take turns getting up with the baby even if you don’t get a night nanny, so even that worst case is not something you have to do every day until the kid sleeps through the night.

If you can’t, then that’s useful information too. What you do about it might depend on how that doctor’s visit went.  If there’s a medical issue, do you want to wait on having kids until that issue is better controlled, if that’s a possibility?  Obviously, it depends on the issue, on how old you are, and on a million other things that only you can weigh.  But it’s an option you have.

Regardless of what medical issues you do or don’t find, it’s good and responsible parenting to make sure that whoever’s responsible for the well-being of a tiny, helpless human is physically and mentally capable of doing so.  So, if you really do need 8 hours of sleep to make that happen, then you really do need 8 hours of sleep to make that happen.  That might mean you need to stay home with the baby longer than you otherwise would, so you can catch naps during the day.  Hiring a night nanny is also a viable plan, and if it’s what you need to do and you can afford it, do it with no guilt or hesitation.

As far as whether parents are exaggerating, I understand why Carolyn gave you some flak for that.  Because most of them aren’t, and sleep deprivation with infants is a real thing.  But, people do like telling war stories, so if someone says they haven’t slept in two straight days, and another parent counters with, “That’s nothing, I haven’t slept all week,” then those individual people probably *are* exaggerating.

But I think it’s more likely that it feels to you like they *must* be exaggerating because you have a different baseline than they do.  Since 7-9 hours is the average requirement for a good night’s sleep, there are people walking around bright-eyed and bushy tailed on seven hours, where you or I would be grumbling and hating life on that much sleep.  Those same people may be tired and reasonably functional on 4 or 5 hours, where you or I should probably not drive.  And people do pull all-nighters and function the next day.  Not necessarily well, and not for multiple days, but it can be done.  By some people, who are not me, and who might not be you. So it’s not that the parent who says they only got three hours of sleep is exaggerating, necessarily, but that you’re picturing how you would be on three hours of sleep, which is very different from how they are.

But the thing that I want to emphasize is that it’s okay to have different physical needs than the people around you.  I don’t know whether you might have some undiagnosed illness, or you just fall toward the edge of the bell curve as far as sleep requirements.  Either of those is nothing to be ashamed of.  We have this weird puritanical streak in our culture that tells us that sleep deprivation is a virtue, and that people who prioritize rest are lazy slackers.  But there is no prize for hurting yourself, or denying yourself help that you need because someone else doesn’t approve.  There is definitely no prize for being unable to care for your baby because you’re exhausted.




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Saturday, 30 September 2017

PCOS and Hair Loss, Part 1: Prevalence and Diagnosis


September is PCOS Awareness Month. For several years this blog has had an ongoing series about different aspects of PCOS (Polycystic Ovarian Syndrome) and its treatments. Today let's talk about a tough subject: PCOS and hair loss (alopecia).

In our past PCOS series, we have discussed the definition and symptoms of PCOS, how it presents, its testing and diagnosis, and its possible causes. We've also discussed the increased risk for endometrial cancer among those with PCOS.

Now we are discussing common treatment protocols for PCOS, and the pros and cons of each. We've already discussed insulin-sensitizing medications like metformin, the TZDs, and inositol. Then we discussed glucose-lowering medications for those who have developed overt diabetes.

We have also discussed anti-androgenic medications and progesterone supplements for menstrual irregularity. In addition, we did a 3-part series on birth control pills for PCOS.

Now it's time to talk about one of the least-discussed symptoms of PCOS, alopecia (commonly known as hair loss). Today we'll discuss what alopecia is, how it's diagnosed, and what might cause it. In the next post, we'll discuss some of the medical treatments available for it. Finally, we'll discuss some of the cosmetic treatments that women with hair loss may utilize, based on suggestions found on hair loss forums and PCOS boards.

If you have personal experience or expertise in any of these areas, please share in the comments section. Don't let other women walk this path alone; speak up and share your ideas. You are welcome to do so anonymously if you prefer. All comments should be respectful.
Disclaimer: I am not a medical health-care professional. This information is not medical advice about a health condition or treatment. Consult your healthcare provider before making any decisions about your care.
The Undiscussed PCOS Symptom

Irregular periods, sub-fertility, and excess body and facial hair (hirsutism) are the classic symptoms of PCOS, and the ones that get discussed the most on PCOS publications and boards. Acne, weight gain, insulin resistance, and blood sugar issues are other symptoms that get discussed regularly.

However, one of the least-discussed symptoms of PCOS is hair loss (androgenetic alopecia). Even acanthosis nigricans and skin tags get more discussion time on PCOS boards than hair loss.

Sadly, alopecia (and how to deal with it) is not discussed very openly, even among women with PCOS. Sometimes it's simply because the majority of women with PCOS do not experience hair loss, but often it's because of the very strong stigma of hair loss in women. Women simply do not want to admit publicly that they are experiencing hair loss, or they may be in denial about it.

For those who do experience hair loss, it's heartbreaking. Facial hair can be shaved off, but significant hair loss on the scalp is extremely difficult to deal with in a society that judges a woman on her appearance (especially her hair, her so-called "crowning glory"). Shame and embarrassment are common feelings among women with hair loss. "Fixing it" becomes the focus.

Some types of hair loss are fixable, but not all. It's important to acknowledge that up front. Unfortunately, right now there is not a lot that can be done for the type of thinning hair that comes with PCOS except to slow it down. PCOS hair loss is typically caused by the skin being ultra sensitive to androgens. Androgen-blockers can sometimes help, but in most cases, treatment for women with PCOS hair loss only results in slowing down or covering up the hair loss, not reversing it.

However, this does not mean that women with PCOS are without choices. There are many different ways of approaching alopecia, and many ways you can still have a great life despite the PCOS and alopecia. Don't let it stop you or silence your voice.

Types of Alopecia

First, it's important to understand what alopecia is, so let's start with a primer on women's hair loss.

There are many types of alopecia. Some are treatable and some are not, so it's important to know which type you have. Here are a few of the possibilities.

Alopecia Areata


Alopecia Areata (AA) is a patchy type of hair loss, rather than the overall thinning on top of the head seen with the Androgenetic Alopecia of PCOS. It often comes on quickly and results in small circular bald patches. Both men and women can experience it. According to some sources, a person has about a 2% chance of developing AA at some point during their lifetime.

Actor Matt Lucas, wikimedia commons
Some people develop Alopecia Areata Totalis, where all of the scalp hair disappears, leaving the person totally bald on the head. Another subtype is Alopecia Areata Universalis, where all body hair disappears as well as the scalp hair, including eyebrows, eyelashes, leg hair, arm hair, pubic hair ─ everything.

Alopecia Areata is due to an autoimmune condition, and as a result can come and go in severity:
In alopecia areata, immune system cells called white blood cells attack the rapidly growing cells in the hair follicles that make the hair. The affected hair follicles become small and drastically slow down hair production. Fortunately, the stem cells that continually supply the follicle with new cells do not seem to be targeted. So the follicle always has the potential to regrow hair. 
Scientists do not know exactly why the hair follicles undergo these changes, but they suspect that a combination of genes may predispose some people to the disease. In those who are genetically predisposed, some type of trigger–perhaps a virus or something in the person’s environment–brings on the attack against the hair follicles.
The good news for people with AA is that the condition is usually temporary. They have the hope of their hair growing back at some point. For most, the hair returns, but for some, the hair never does come back. Or their hair may come and go unpredictably through their lives, and they never quite know what to expect.

Mild AA can be fairly easy to deal with, from simply styling the hair a different way or applying a little scalp concealer. However, it can be very difficult to deal with severe AA, especially Alopecia Totalis or Universalis. Dealing with the loss of eyebrows and eyelashes as well as complete baldness on top is not easy, especially for women.

On the other hand, some deal with the loss quite effectively with wigs, false eyelashes, eye liner, or tatooed-on eyebrows. There are many resources for products like these here. Some celebrities have had AA and successfully hidden it, like Christopher Reeve and Neve Campbell.

Others choose not to hide their condition, like actor Matt Lucas or athlete Charlie Villanueva. They find trying to hide it a waste of time and energy and live proudly bald.

Here are some links for further information about AA:
Telogen Effluvium

Telogen Effluvium (TE) is a temporary form of hair loss and will usually resolve. It usually occurs as the result of a shock, crisis, or drastic hormonal change in the body.

Normally, hair does not continually grow on the scalp. It goes through a growing phase ("anagen") and a resting phase ("telogen"). Normally, about 10-20% of the hair follicles on your head are in a resting phase at any one time. Telogen Effluvium occurs when something causes a higher percentage of follicles to go into telogen phase, making the hair look thinner. Usually this resolves within a few months, but sometimes it takes longer or becomes chronic.

One common cause of TE is from medication which changes hormone levels, such as starting or stopping hormonal birth control like oral contraceptives. TE can also result from hormone replacement therapy, Clomid, or steroid use. Some medications for blood pressure, diabetes, hypothyroidism, anti-depressants, or high cholesterol can also cause temporary hair loss.

Probably the most common cause of TE is post-pregnancy hormone changes. The high estrogen levels of pregnancy can cause thicker and more plentiful hair, but once the estrogen levels drop after childbirth, the extra thickness and hair is lost as most of the hair goes into a "resting" phase, making the hair appear thin. It may take a while for hair to normalize, but most women with post-partum thinning go back to their normal appearance with time.

Some chronic illnesses like Crohn's Disease, IBD (Inflammatory Bowel Disease), hypothyroidism, or liver disease can cause Telogen Effluvium too. A severe shock to the system from things like car accidents, crash diets, severe stress, or serious illnesses can cause it. TE is also common after major surgery in women but may take a while to appear.

Dietary deficiencies are classic causes of TE as well. Common ones include deficiencies in iron, ferritin, biotin, protein, zinc, and certain B vitamins (especially B12), as well as too much vitamin A. Sometimes vegans are prone to hair thinning because over time they may develop a B12 deficiency. Many people who have had gastric bypass or other malabsorptive bariatric surgeries have hair fall out eventually as nutritional deficiencies accumulate over time. Eating disorders can also bring on TE.

Anagen Effluvium

Anagen Effluvium (AE) is a rapid and sudden hair loss from exposure to toxins or treatments for cancer. Chemotherapy is a common source of temporary hair loss for those with cancer because it usually targets all rapidly dividing cells. This means it targets cancer, but hair and mouth cells are also rapidly dividing cells and so are often collateral damage. Radiation treatments to the brain also often cause hair loss.

Although hair usually grows back after chemotherapy and/or radiation, it may grow back differently (changed color, straight instead of curly, change in texture). In some cases, it grows back only partially and never gets back to the fullness it used to have. Sometimes this patchiness can be quite pronounced.

Other Types of Alopecia

There are other, more rare types of alopecia as well, including Scarring Alopecia and Traction Alopecia. These result from trauma to the scalp, usually from tight hairstyles like braids, cornrows, tight ponytails, or hair extensions.

Bald spots can also result from trichotillomania, a compulsive pulling of a person's own hair. Infections can cause similiar hair loss, including fungal infections (like ringworm) and folliculitis. Diseases like lupus, congenital adrenal hyperplasia, or syphilis can also result in hair loss. And of course, age causes a gradual thinning of the hair in many people as hormones shift. About half of women experience some degree of hair loss after menopause.

Androgenetic Alopecia 

FPHL involves more diffuse thinning
Androgenetic Alopecia (also called Androgenic Alopecia, or AGA) is the term for typical female-pattern hair loss (FPHL). It is hair loss caused by genetic predisposition and excess "male" hormones or an extra sensitivity to these hormones (androgens). For this reason, sometimes it is called male-pattern hair loss in women but it does not affect women in quite the same way as it does men.

Typical male vs. female hair pattern loss differences
Women's hair loss is usually characterized by more diffuse thinning all over the top of the head behind the hairline, rather than one particular balding area as in men. Because women's hair loss usually involves gradual thinning, it is less obvious at first than hair loss in  men. However, the thinning gradually spreads so that eventually most of the top of the head experiences thinning, the scalp shows through, and the hair loss becomes more obvious. Although less common, some women also experience diffuse thinning on the sides of the head, along the front or temple-area hairline, and further down the back of the head as well.

Dihydrotestosterone (DHT), a derivative of the male hormone testosterone, is the main culprit behind hair loss in both men and women, as one website explains:
Testosterone converts to DHT with the aid of the enzyme Type II 5-alpha reductase, which is held in a hair follicle's oil glands. Scientists now believe that it's not the amount of circulating testosterone that's the problem but the level of DHT binding to receptors in scalp follicles. DHT shrinks hair follicles, making it impossible for healthy hair to survive. 
The hormonal process of testosterone converting to DHT, which then harms hair follicles, happens in both men and women. Under normal conditions, women have a minute fraction of the level of testosterone that men have, but even a lower level can cause DHT- triggered hair loss in women. And certainly when those levels rise, DHT is even more of a problem. Those levels can rise and still be within what doctors consider "normal" on a blood test, even though they are high enough to cause a problem. The levels may not rise at all and still be a problem if you have the kind of body chemistry that is overly sensitive to even its regular levels of chemicals, including hormones. 
Since hormones operate in the healthiest manner when they are in a delicate balance, the androgens, as male hormones are called, do not need to be raised to trigger a problem. Their counterpart female hormones, when lowered, give an edge to these androgens, such as DHT. Such an imbalance can also cause problems, including hair loss.
Many women with PCOS experience Androgenic Alopecia, although it is a far less common symptom than hirsutism or acne. Put another way, though hair loss rates are higher in women with PCOS than in the general population, most women with PCOS do not experience hair loss.

Why some women with PCOS experience alopecia and others do not is not clear. It probably has to do with each person's unique genetic make-up, hormone levels, and sensitivity to androgen receptors.

Summary

The bottom line is that there can be many causes of hair loss. Just because you have PCOS does not mean you could not possibly develop Alopecia Areata or have hair loss due to an underactive thyroid or a nutrient deficiency. You need to have your case reviewed by a dermatologist so you can get to the bottom of the cause of your hair loss.

Many types of hair loss are treatable and reversible, but some are not. Unfortunately, Androgenetic Alopecia, the type most common with PCOS, does not usually seem to be reversible, but there may be things you can do to slow it down. And of course, there are many practical things you can do to disguise it, if you wish to do so. Or you can simply learn to deal with the hair loss and not let it affect your happiness.

How Common is Hair Loss in PCOS?

One difficult question to answer is the incidence of alopecia in women with PCOS.

There is plenty of research documenting how much of the overall population experiences hair loss at some point in their lives, but most of this research does not differentiate between causes of the hair loss, just that it occurs at some point.

It is very difficult to separate out figures of alopecia in the general female population vs. those that are attributable to PCOS alone. First, let's start by discussing alopecia in the female population by age.

Hair Loss by Age

Most research focuses on the prevalence of hair loss differentiated by age. For example, it is estimated that about one-fourth of men begin balding by age 30, but that this increases to about two-thirds by age 60.

In women, the numbers are more uncertain. One study found that about one-third of all Caucasian women experience female-pattern hair loss (FPHL) at some point; however, a lot of this hair loss occurs after menopause. How much occurs before menopause is less clear.

One study found that about 10% of pre-menopausal women experience significant hair loss, and this number increases to about 50-75% of women over age 65. Another study found hair loss rates of about 12% of women in their 20s, which increased to 57% in women over age 80:
Twelve percent of women first develop clinically detectable FPHL by age 29 years, 25% by age 49 years, 41% by 69 years, and over 50% have some element of FPHL by 79 years. Only 43% of women aged 80 years and above show no evidence of FPHL.
How many of these women might have PCOS? It's not clear. One study of Finnish women found that about one-third experienced noticeable hair loss by age 63, and that this hair loss was often tied to strong insulin resistance. The more severe the degree of hair loss, the more severe the insulin resistance the woman likely had. Thus, it's likely that many of these women had PCOS, but the study did not look into that connection directly.

Alopecia Incidence in Women with PCOS

We do know that alopecia and PCOS are tightly tied together. One study showed that two-thirds of women experiencing hair loss had PCOS.

But this doesn't tell us the opposite; how many women with PCOS experience hair loss as one of their symptoms?

Not a lot of research exists on this question. Most studies do not quantify how many women with PCOS also have alopecia, just that it's a relatively uncommon symptom. However, recently some data has emerged, although the sample sizes in the studies are fairly small so the results vary considerably.

One British study (Sivayoganathan, 2011) found that 16% of women presenting with PCOS-like symptoms had hair loss, whereas 56% had hirsutism.

Another slightly larger study (Quinn 2014) found that 22% of women who met strict criteria for PCOS were experiencing alopecia.

Another study (Ozdemir 2010) found that 34.8% of women with PCOS had alopecia, whereas 73.9% of them had hirsutism. Similarly, Christodoulopoulou 2016 found that 36% of women with PCOS experienced alopecia.

So while most women with PCOS do not experience alopecia, between 16-36% do. In other words, between 1 in 6 and 1 in 3 women with PCOS experience hair loss. Yet even among this group, hair loss is largely ignored or talked about only minimally because of the shame and embarassment.

Interestingly, while hirsutism seems to be fairly closely correlated with androgen levels, alopecia does not. It may be less about how much androgens you produce and more about how sensitive your hair follicles are to androgens. This raises the question of whether anti-androgen medications are really an effective treatment for alopecia. (More on that in another post.)

Diagnosing Alopecia

The Ludwig Scale of Female Pattern Hair Loss (1977)
Again, if you have hair loss, it's important for you to see a dermatologist because there are so many possible causes of alopecia in women and some types are temporary or treatable. A dermatologist can help you determine which type you may have and what can be done about it.

The progression of female-pattern hair loss is usually judged on either the 3-point Ludwig Scale (above), the gradated 3-point Savin Scale (see the bottom of this section), or the 5-point Sinclair Scale (see just below). While there are other scales available, the Ludwig or Sinclair scale seems to be the most commonly used.

Sinclair Scale for hair loss
To diagnose alopecia, a dermatologist will usually do a pull test, a density test, and sometimes a scalp biopsy. Patients should provide a summary of any medications they are currently taking or have taken in the recent past. Doctors should take a detailed medical history of other conditions, including family history of hair loss and autoimmune conditions. A manual examination of the thyroid may also be indicated.

Research strongly suggests that tests for nutritional and endocrine issues also be run, including:
  • DHEAs
  • Testosterone
  • Androstenedione
  • Prolactin
  • Follicular stimulating hormone
  • Leutinizing hormone
  • Serum iron
  • Serum ferritin
  • Total iron binding capacity (TIBC)
  • Thyroid stimulating hormone (T3, T4, TSH)
  • VDRL (a screening test for syphilis)
  • Complete blood count 
  • Zinc, Vitamin D
In men, male pattern hair loss usually begins at the crown, then spreads to the temples, and progresses from gradual thinning to total bald spots. The hairline in front often recedes. In the more severe cases, men may be left only with a narrow horseshoe of hair along the back and sides of the head.

Savin Scale of hair loss
In women, the pattern is different. The hair loss begins on the top of the head, and also just behind the front hair line. The first sign is often a widening of the part in the hair, and then the hair on top of the head gradually begins to thin. It can reach down into the temple areas or on the back of the head, just below or around the crown. It is more gradual than men's hair loss, and is usually more diffuse (spread out).

Rarely do women with androgenetic alopecia lose all their hair, have a completely receding front hair line, or have complete bald spots. Instead, the hair becomes progressively thinner and more diffuse, and the scalp shows through more and more, especially in direct light. Eventually, this hair loss can become severe and become near-baldness, especially as women pass menopause.

Women's AGA alopecia tends to become noticeable later than in men, but because they are more conscious of their hair and because the social ramifications of hair loss are more severe, they tend to come in for diagnosis and treatment earlier in the process.

While hair loss is emotionally difficult for both genders, it is especially traumatic for women. Hair loss in men is common and baldness is relatively accepted; in women, it is highly stigmatized, so it is nearly always hidden away and is rarely discussed.

Summary

There are many forms of alopecia and many possible causes for it.

This is why it's important to see a dermatologist in the early stages of alopecia, so you can hopefully find some answers sooner than later. Unfortunately, many doctors are dismissive of these concerns or just put you on strong medications right away instead of trying to determine the root cause of the issue. Women on the PCOS forums stress the importance of seeing more than one doctor if necessary to get answers.

Once a cause is determined, then a course of treatment can be prescribed. Sometimes this is helpful, often it is not, but it may be worth trying just to see. More on these treatment options in the next posts.

Information is power. Make your decisions from an informed place and be aware that there is a lot of quackery and fraud in the hair loss field. People make all kinds of recommendations and claims about treatments, but very little data exists proving whether these treatments actually help.

Be very wary about claims of what can help, even from PCOS resources. Research as much as you can to learn about the benefits and risks of everything you consider trying. Be sure to visit the hair loss forums online so you can gain wisdom and support from those who have already traveled this path before you.

Above all, remember that your looks don't define you. Women with PCOS have many challenges to their self-esteem via hirsutism, acne, weight, and/or alopecia. Dealing with these challenges is frustrating and demoralizing at times, but ultimately these challenges do not define you. Only you can do that.

Remember that who you are inside is the most important thing, and that your confidence and a strong sense of self can overcome society's prejudices. 

Next post: Medications and Treatments for Alopecia


References

J Family Reprod Health. 2016 Dec;10(4):184-190.Clinical and Biochemical Characteristics in PCOS Women With Menstrual Abnormalities. Christodoulopoulou V, Trakakis E, Pergialiotis V, Peppa M, Chrelias C, Kassanos D, Papantoniou N. PMID: 28546817
...MATERIALS AND METHODS: We conducted a prospective observational study of patients 17-35 years of age with PCOS that attended the department of Gynecological Endocrinology of our hospital. RESULTS: A total of 309 women with PCOS participated in the study. In total, 72.2% suffered from menstrual cycle disorders...36% of the sample had androgenetic alopecia and 56.4% had acne....
Fertil Steril. 2014 Apr;101(4):1129-34. doi: 10.1016/j.fertnstert.2014.01.003. Epub 2014 Feb 15. Prevalence of androgenic alopecia in patients with polycystic ovary syndrome and characterization of associated clinical and biochemical features. Quinn M, Shinkai K, Pasch L, Kuzmich L, Cedars M, Huddleston H. PMID: 24534277
OBJECTIVE: To describe the prevalence of androgenic alopecia (AGA) in patients with polycystic ovary syndrome (PCOS) and to characterize associated clinical and biochemical features... SETTING: Multidisciplinary PCOS clinic at a tertiary academic center. PATIENT(S): A total of 254 women with PCOS according to the Rotterdam criteria were systematically examined from 2007 to 2012 by a reproductive endocrinologist, a dermatologist, and a psychologist... RESULT(S): Fifty-six of 254 patients with PCOS (22.0%) had AGA. Subjects with PCOS and AGA were more likely to have acne or hirsutism than those without AGA (96.3% vs. 70.6%)... There were no differences between subjects with and without AGA in biochemical hyperandrogenism or metabolic parameters. CONCLUSION(S): AGA is prevalent in 22% of subjects meeting diagnostic criteria for PCOS. AGA is associated with other manifestations of clinical hyperandrogenism, but not with greater risk of biochemical hyperandrogenemia or metabolic dysfunction than with PCOS alone.
Hum Fertil (Camb). 2011 Dec;14(4):261-5. doi: 10.3109/14647273.2011.632058. Full investigation of patients with polycystic ovary syndrome (PCOS) presenting to four different clinical specialties reveals significant differences and undiagnosed morbidity. Sivayoganathan D, Maruthini D, Glanville JM, Balen AH. PMID: 22088131
OBJECTIVE: This study aimed to compare the spectrum of polycystic ovary syndrome (PCOS) symptoms in patients from four different specialist clinics. DESIGN: A prospective cross-sectional observational study. SETTING: The study was conducted at the infertility, gynaecology, endocrine and dermatology clinics at Leeds General Infirmary, U.K. PATIENTS: Seventy women presenting with features of PCOS: 20 from infertility, 17 from gynaecology, 17 from dermatology and 16 from endocrine clinics.  INTERVENTIONS: Participants were assessed for symptoms and signs of PCOS and underwent a full endocrine and metabolic profile and a pelvic ultrasound scan. RESULTS: All subjects had experienced menstrual problems, 81% were overweight, 86% had polycystic ovaries on ultrasound, 56% had hirsutism, 53% had acne, 23% had acanthosis nigricans, 16% had alopecia and 38% had previously undiagnosed impaired glucose tolerance (IGT) or diabetes....
Acta Obstet Gynecol Scand. 2010;89(2):199-204. doi: 10.3109/00016340903353284. Specific dermatologic features of the polycystic ovary syndrome and its association with biochemical markers of the metabolic syndrome and hyperandrogenism. Ozdemir S, Ozdemir M, Görkemli H, Kiyici A, Bodur S. PMID: 19900078
...DESIGN: Prospective descriptive analysis. SETTING: University-based tertiary care. SAMPLE: One-hundred and fifteen untreated consecutive women diagnosed as having PCOS... RESULTS: The prevalence of acne, hirsutism, seborrhea, androgenetic alopecia and acanthosis nigricans was 53%, 73.9%, 34.8%, 34.8% and 5.2%, respectively. Acne was not associated with the hormonal, metabolic and anthropometric variables. Hirsutism had positive associations with total testosterone, fasting glucose and total cholesterol, and a negative association with age. Seborrhea was found to be related with free testosterone, fasting glucose and insulin. A negative association was determined among androgenic alopecia and free testosterone, low-density lipoprotein and insulin.  CONCLUSIONS: Acne and androgenic alopecia are not good markers for the hyperandrogenism in PCOS. Hirsutism appears to be strongly related with hyperandrogenism and metabolic abnormalities in PCOS women.


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