Another day, another dollar(s) spent at the Dermatologist to treat my ongoing hair loss. About a month ago I had this Dermatologist visit for hair loss. That “hair loss expert” refused to do anything other than tell me I had Androgenetic Alopecia, and get over myself for being unhappy about it. I really wanted to get started on Spironolactone to see if that would help, and I made yet another Dermatologist appointment with a doctor that has a “special interest in female hair loss.” I was really hoping she’d prescribe the Spiro (or even Propecia), but despite begging her three times, she wouldn’t.
No more Telogen Effluvium?
The new doctor was nice, and much more understanding than the last guy. First she did a pull-test for Telogen Effluvium and she said only one hair came out, even though she did it in several areas. I still lose big handfuls of hair every day, so losing only one hair was shocking. Every doctor over the past 10 years, except the last one, said I had TE. Many of the things I’m still trying to fix (low iron, low thyroid) cause TE, so if I don’t have it anymore, then does that mean my lowish iron and slight thyroid problem isn’t causing hair loss? I probably only lose 100 hairs a day (which is normal) but is it really normal to lose 100 hairs a day when you have 70% less hair than you used to?
More blood tests
I begged the last Dermatologist to do a few simple blood tests, but all he was willing to let me check was iron and ferritin. My ferritin came back at 55, which is still a bit low to grow hair according to some doctors, but it’s better than it has been. I have been experimenting with a lot of different iron supplements lately (along with Vitamin C and L-Lysine), and it’s crazy I can’t get the ferritin to go higher. Taking too much iron is dangerous, but apparently I’m not taking too much.
The new doctor wants to check my DHEA-S (which I begged the other guy to check), and my thyroid TPO antibodies (which have always come back negative). I do have high thyroid thyroglobulin antibodies, and was on thyroid medication for a year, but it didn’t help with my hair, and I started to get heart palpitations at the lowest dose, which made me believe I didn’t need thyroid medication. Another recent blood test showed my thyroid TSH, T3, and T4 levels were all “normal” although not exactly perfect. I’m not sure how to raise my T3 level without thyroid medication. So frustrating! Raising your iron levels is supposed to raise your T3, though.
3000 mcg of Biotin
The doctor told me to take 3000 mcg of biotin every day. I already take 1000 mcg, but the biotin pills I take have a bunch of other stuff with them (Twinlab Hair Factors), so the pills are huge, expensive, and taste horrible. Thus I’ve only been taking one, instead of the serving size of 3. I start taking pills the first thing in the morning, and I barely get through them all by the end of the day – taking vitamins has become my new non-paying job.
Derma Smoothe FS Oil
Next the Dermatologist said I have an inflamed scalp and prescribed weekly use of Derma Smoothe FS Oil. I had never heard of it, and she made it sound like it was just a hydrating oil. After an internet search, I realized it’s a topical steroid treatment for psoriasis. Hmmm. Why would that work for hair loss? One of the possible side effects also happens to be hair loss. There’s hardly any mention of its use for hair loss online. My scalp doesn’t look inflamed to me, and I don’t have any pain, but when you have Androgenetic Alopecia, you usually do have some inflammation. I am wary of using this prescription steroid. Years ago another doctor prescribed me something similar – Luxiq foam. It didn’t do anything for my hair loss – big surprise. I’m wondering if she prescribed it because she’s in cahoots with the maker of Derma Smoothe – I really don’t trust doctors anymore. I’ve been using gentle sulfate-free shampoos lately, and T/Gel with Zinc to try to help my hair and scalp. I would use Nizoral, but it makes my hair shed a lot!
Steroid scalp injections!
This came as a shock – the Dermatologist refused to prescribe me Spironolactone, but she said at the next visit she would probably do steroid scalp injections to combat the inflammation. Really? I’ve only ever heard of this for Alopecia Areata, and I don’t have that. It’s rare that a doctor would do steroid scalp injections for Androgenetic Alopecia, so this puts up a huge red flag! I’m also sure it costs a fortune, and I told her my insurance is horrible and it wouldn’t cover any of it. Please just give me the $4 Spiro prescription instead. Have you heard of scalp injections for genetic hair loss??? Doctors hate it when you object to something they want to do, but my gut says they will be a waste of money, and I’m sure they hurt like hell.
I’m supposed to see her again in a month for a follow-up. I’m at a loss of what to do next. I’m sure my DHEA-S test will come back “normal” and of the other blood tests I’ve had the last few years, they were all “normal,” which rules out Lupus, Diabetes, PCOS, etc. I don’t know where to go from here. My biggest obstacle is my insurance – I pay for most of these doctor visits out-of-pocket, and I don’t make enough money to cover my bills, let alone the never-ending doctor appointments.
I wrote a post a few weeks ago on my skin care site about my recent struggles with female hair loss. You can read the post here – Female Hair Loss – A Never-ending Nightmare (link opens in a new window). That rant is what prompted me to start this blog. I realized it was time to devote an entire blog to the subject of hair loss.
Continue reading my female hair loss post on Savvy Skin…
Why me? Why am I losing my hair? I’m sure most people ask themselves this when they develop hair loss. Is it just bad luck and bad genes? Did I do something horrible to deserve this? Does God hate me? Or is it something that can be fixed if I just find the right culprit – low iron, low thyroid, stress, etc.? This is going to sound crazy, but for me personally, I think I was destined to have hair loss.
I was the girl with the big hair
When I was younger I had average hair, but when I turned 13 my hair became huge. I suddenly had an afro! I was the girl with the big hair. Hair defined me and it was the one feature I was known for. I had so much unmanageable hair that one day I cut off giant clumps of hair to thin it out. I just wanted to fit in with everyone else. For at least 10 years, I was “Jeni, the girl with the big bushy hair.”
The alopecia TV movie
I don’t remember if it was an after school special movie, or a made for TV movie, but there was a movie about a high school girl that had alopecia. She was in the shower, and clumps of her hair started falling out. A few weeks later she was totally bald, and diagnosed with alopecia. I couldn’t imagine anything worse in the entire world than losing your hair. I thought it was extremely rare for a woman to go bald, or have thinning hair, but nonetheless, I was scared to death. What if it happened to me? After that movie, this became the one thing I feared more than anything in life.
Why I hate hairdressers
When I was 14 I went to the hairdresser and she didn’t know what to do with all my hair at first because it was so thick. But after she washed it and it was wet, she said “Oh you really don’t have that much hair at all. It just looks like you do, but you don’t. Your hair is really fine and there’s not nearly as much of it as you think. If you lost some, it would be really thin.” That scared the hell out of me! As much as I hated my afro, I didn’t want to have thin hair! I felt like I was one step away from total baldness. I began to avoid hair salons after that, and started to cut my own hair.
Hair replacement infomercials
When I was in my early 20s, I was obsessed with those hair replacement infomercials for Hair Club For Men and Bosley and never tired of watching them over and over. I was infatuated with guys with long hair in hair metal bands. I always thought it would be so sad for these rockstars to lose their hair – what would hair metal be without hair? My goal in life was to find the cure for hair loss so that men didn’t have to lose their hair. What if Bret Michaels went bald?? I know some men don’t care one way or the other about balding, but for others it’s so painful, and I wanted all men to have great hair. The informercials would make me feel better – at least there’s some hope for these desperate men – if they want hair, they can always buy it. I was still slightly worried my own hair might fall out one day, but I figured since I was female, I would be fine after all. I was so thankful to not have been born a man!
Destined for hair loss
Here I am now – living my worst nightmare, and experiencing my absolute worst fear in life - going bald! Do I have the worst luck or what? Did all my thoughts about hair loss conjure this up? Maybe some people in life have an obsession with hair loss as a kid, but I doubt it. I’ve always said I wanted to find the cure for hair loss, but when I was just worried about rockstars going bald, it wasn’t enough motivation for me to actually do anything about it. Now that it’s actually happening to me, it motivates me like crazy. I know my chances of curing genetic hair loss are pretty slim – scientists all over the world are surely working on it, because it would be a billion dollar discovery. But I still have hope. If I don’t cure genetic hair loss, at least I can help others going through the same thing. And there are a lot of people with temporary hair loss that can get their hair back. As Oprah always says, everyone has a purpose in life – I think my purpose has to do with hair loss! I know that’s crazy, but that’s what I believe.
Welcome to my new blog Hair Loss Hell. My name is Jeni, and I’ve been dealing with hair loss for about a decade now. It’s finally time that I write about my ongoing struggle with my thinning hair. I hope to help others going through the same thing, and to give and receive support. Why is the site called Hair Loss Hell? For most women (and men), losing your hair is hell! I was going to call the site something more generic like “female hair loss” or “hair loss in women” but those names were already taken, and I think hair loss hell sums up the whole hair loss theme perfectly.
To learn more about me, read my About Hair Loss Hell page. I will be posting articles about androgenetic alopecia, telogen effluvium, anxiety and hair loss, doctor’s visits, thyroid problems, low iron, birth control pills, vitamins and minerals, wearing hair, and more! ~ Jeni