hair loss and chronic illness…

I’d love to tell you that before developing postural orthostatic tachycardia syndrome (POTS) and mast cell activation disorder (MCAD), I had silky, lustrous locks. But that would be a lie.

I have always had unfortunate hair. I was born with a thick black mop atop my head. As a little girl, it lightened up a lot and had cute little curls on the ends. But then I turned into a bit of a tomboy and my mom cut off all the cute little curls. She gave me a short haircut, the kind where other kids have to ask if you’re a boy or a girl, and your fragile 9 year old ego propels you into your first existential crisis.

After my hair started growing out, I realized that it still had curls. But not those cute little curls on the ends. No, now it’s just slightly wavy and frizzy. Living along the coast with high humidity certainly doesn’t help. I have triangle hair – where if I don’t do something with it, it’s a big frizzy pyramid. Ladies with wavy hair, you know what I’m talking about. I have that kind of sensitive hair where too little styling gel leaves my hair a near-afro mess, but too much makes it crispy and greasy, and there’s only a 1 drop difference between the two. I have yet to master it.

When I was studying for the bar exam almost 10 years ago, I kept a count of how many gray hairs I acquired due to the stress. I started with a single gray hair, and by exam day, I had 8. The other 112 I now have 10 years later are courtesy of this guy.

While I have always had unfortunate hair, I used to have a lot of unfortunate hair. Thick, abundant unfortunate hair. Hair stylists used to have to book me for appointments back to back due to the time it took to cut my hair. I first noticed that I was losing a lot of hair about 5 years ago. In the beginning, I was never quite certain. I was sick and under a lot of stress. Or, it was hot out. I had been using a hair dryer more. There were always justifications. Finally as I began to acknowledge that I was losing more hair than normal, I went off birth control. And lost at least half of my hair.

Two years later, the shedding is slowing down, and I have small hairs growing in, gray of course, but at this point I’ll take what I can get. But I’m still losing more than I should. So, I finally made an appointment with a dermatologist, although I don’t expect it will help. More on that in a minute.

Hair loss unfortunately comes with the territory of a lot of illnesses. The average person loses about 100 hairs a day. When you start to lose more, a lot more, it can be traumatic. You become fearful of showering or using a brush because of how much hair you will lose. And in my experience, most doctors will shrug it off as normal loss or genetics. Friends, if you’re in your 20s or 30s or even 40s with no family history of premature hair loss and you suddenly start losing a lot of hair, something’s wrong. Don’t let a doctor tell you otherwise.

So, what causes the sudden increase in hair loss? There are a number of possibilities:

• Ferritin Iron deficiency. If you suddenly start losing a lot of hair, especially if you feel unusually fatigued, have your ferritin checked. Those on H2 blockers or proton pump inhibitors do not absorb ferritin or vitamin D well, so get tested regularly if you take either drug. Women lose ferritin every month with our periods. Normal range is 10- 120 ng/mL, but for hair regrowth you need a ferritin of 70 or higher. Too much iron can make you sick, so don’t take ferritin supplements without first talking to your doctor.
• Thyroid. Both hyperthyroidism and hypothyroidism can cause your mop to thin. If you also notice a change in weight or moods, have your doctor run a full thyroid panel.
• Other hormones. I recently discovered many people with dysautonomia have excess estrogen. I’m still researching that and will write a separate post when I know more, but for now, you may consider having your estrogen levels checked. Too much estrogen, and too much testosterone can cause hair to fall out. Hormone fluctuations can be caused by birth control, pregnancy, menopause, unhealthy lifestyle, or even toxins in our environment or products we use. You would be surprised (and hopefully disgusted) at the amount of estrogens in some foods. If you are losing hair due to a hormone imbalance, it may eventually correct itself (as is often the case with pregnancy), or you may need to look into hormone therapy. To help lower estrogen naturally, eat lots of fruits and vegetables, especially cruciferous vegetables like broccoli, cauliflower, kale, collared greens and brussel sprouts. Depending on what other hormones are imbalanced, discuss maca, inositol or vitex with your doctor for other natural regulators. You may also want to take fish oil (omega 3) and evening primrose (omega 6).
• Vitamins A, B or D. Too much vitamin A, and too little vitamin B or D can cause hair loss. Talk to your doctor about getting tested and taking supplements.
• Zinc. Studies have shown zinc may help regrow hair. Many Americans are low in zinc (especially vegetarians), but because doctors very rarely test for zinc, many never know of their deficiency. I found out by testing on my own that I’m rather deficient.
• Stress. Both physical and emotional stress are known to cause us to shed some locks. So, just don’t be stressed 😉
• Medication. Ugh. I hate this one, because it applies to almost every POTSie out there. Certain medications cause hair loss, including chemotherapy, blood thinners, antidepressants, and – yep – beta blockers. Unfortunately there isn’t much you can do to correct the problem, short of stopping the medication. The good news is the loss isn’t permanent and hair should grow back after stopping the medication.

Other natural supplements to discuss with your doctor for reversing hair loss are biotin and collagen.

If you’re having difficulty getting in to see a doctor, or if your doctor won’t test for all of the above, consider ordering your own tests and monitoring your supplementation that way. I use Walk-in-Lab to monitor my ferritin, vitamin D, and zinc.

My initial hair loss was due to low ferritin (As I mentioned above, ferritin needs to be around 70 to grow hair. Mine was 3), then beta blockers, then hormonal imbalance. As long as I remain on the beta blocker, I’m not sure there’s much that can be done. I’ll post if the dermatologist has any brilliant insights.

The sad reality for many with chronic illnesses is that we may end up having to choose between foregoing a medication that helps our condition significantly, or losing our hair. When the medication vastly improves your quality of life, like the beta blocker does for many POTSies, it seems like a no-brainer. But it’s not.

I did a search for quotes about hair to end with, and almost all quotes I found were about how wonderful it is to have a good head of hair. “Invest in your hair; it’s the crown you never take off.” “Gorgeous hair is the best revenge.” “Good hair days make me feel like I can rule the world.” “If my hair looks good I can deal with anything.” “My mood depends on how good my hair looks.” “Life is too short to have boring hair.” So to tell each other that no one cares about hair, is – at least in our society – bullshit. It shouldn’t matter, but it does.

But friends, the truth is, most people won’t notice. Those quotes are all about our subjective view of our own hair. Everyone else is focusing on that giant booger in your nose.

Just kidding.

We all have physical shortcomings we wish we could change. You are surrounded by people with imperfections. Communities are built on such imperfections. Treat your imperfections how you would treat others’ imperfections: with love.

So I will leave you with the one quote that came up in my search that has nothing to do with hair, and everything to do with imperfections:

“Somehow you get a little older, a little fatter, and you end up going a little easier on yourself.” – Anne Lamott

Smell ya later.
– Linds