Mast Cell Disease & Hair Loss: Can MCAS Make Us Lose Our Hair?

The Struggle / Saturday, December 23rd, 2017 / 4 comments

I’ve gotten a few emails asking about MCAS & hair loss and I’ve seen several patients write about their own experience with hair loss that they believe is caused by their mast cell disease. I’ve had a lot of problems with this issue myself, unfortunately, so I did some research and came up with some interesting information directly linking mast cell activity to hair loss.

Losing our hair as we age is normal, but losing our hair in significant amounts in a short period of time is not normal and can be soul-crushing to both men and women. This is why there is a billion dollar hair loss industry!

My Experience

My entire life I have always struggled with having an overly sensitive scalp and periods of thinning hair. In the last few years I noticed a huge increase in not just how much hair was falling out (it came out by the handfuls at one point!) but also the quality and texture of my hair changed significantly when my disease ramped way up. It was getting wiry and breaking off a few inches from my scalp. No matter what I did, I couldn’t fix it.

I didn’t have the greatest hair in the world, but it was pretty nice and I could wear it long. Over the next couple of years I lost a ton of my hair and tried using extensions, hair regrowth formulas (which made me even more sick) and finally ended up cutting it short to try to make it look halfway decent.

At the height of my illness it was about half as thick as it was before, but I noticed it more than anyone else, it seemed. In his book, Never Bet Against Occam, Dr. Afrin discusses this phenomenon:

However, even though the patient can tell she’s suffering a lot more hair loss than normal, the general appearance (to others anyway) is usually one of a full head of hair, so this is yet another manner in which MCAS patients are handicapped by appearing normal while in truth suffering abnormalities in a wide range of body organs and systems.

Compared to many other MCAS patients I’ve seen, my hair loss was minimal but I was still absolutely devastated! Call me vain, but practically no woman (or man) wants to be bald. It can be a real psychological blow and exacerbates the anxiety this disease already bestows upon us.

So how does MCAS cause hair loss?

It didn’t take long to find the link. From Wikipedia:

Prostaglandin D2 (or PGD2) is a prostaglandin that binds to the receptor PTGDR (DP1), as well as CRTH2 (DP2). It is a major prostaglandin produced by mast cells – recruits Th2 cells, eosinophils, and basophils. In mammalian organs, large amounts of PGD2 are found only in the brain and in mast cells. It is critical to development of allergic diseases such as asthma.

A research study from 2012 entitled “Prostaglandin D2 Inhibits Hair Growth and Is Elevated in Bald Scalp of Men with Androgenetic Alopecia” describes in detail the mechanism behind mast cells producing prostaglandin D2 and it’s effect on hair growth/loss.

They also confirmed my theory that inflammation causes the hair follicle itself to shrink, causing breakage and thinning hair:

In AGA, large “terminal” hair follicles forming thick hair shafts miniaturize over time to small follicles that generate microscopic effete hairs. Follicle miniaturization is accompanied by a decrease in the duration of the growing phase of the follicle (anagen), which normally lasts several years to produce hair more than 1 m long, but which decreases to only days or weeks in AGA. This results in an increase in the percentage of resting (telogen) hair follicles containing microscopic hairs in bald scalp. In addition to these intrinsic changes to the hair follicle, infiltrating lymphocytes and mast cells have been identified around the miniaturizing follicle, especially in the area of the stem cell–rich bulge area.

So what can we do about it?

I know I sound like a broken record here, but avoiding triggers and finding the right medications to treat our MCAS can make a huge impact on the health of our hair (and everything else). My own hair isn’t still fully recovered but it is much, much healthier than it was. I’ve noticed my tender scalp isn’t so tender anymore, either, so that’s a nice bonus.

As an experiment, I’m going to be using my extra cromolyn sodium in a hair rinse to see if that helps like it does with my gums and itchy skin. I’ll definitely update here with the results.

Understanding the connection between mast cell dysfunction and hair loss is a good place to start.

Good luck!

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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4 Replies to “Mast Cell Disease & Hair Loss: Can MCAS Make Us Lose Our Hair?”

  1. Oh my! I don’t have an MCAS diagnosis yet, still working on that part. But every article I read about it convinces me it’s the one thing to explain all my symptoms, some life-long, some only starting earlier this year. Around the same time I started flushing severely after eating, developed tinnitus, migraine headaches I’d never had before, and rashes and reactions to all my normal skin and hair care products, I also got a sensitive and often painful scalp, and my hair started falling out in handfuls!
    It’s now half or less what it was before I got sick, brittle and fragile, and the hair loss forms a definite male baldness pattern. It’s getting so bad I’m seriously thinking I should cut my hair super-short and start wearing wigs!
    $%^# mast cells! I’m strict about trigger avoidance, but some are unfortunately unavoidable. Hoping the daily aspirin the neurologist recently recommended will keep that pesky PGD2 in line!

    1. Isn’t it incredible to finally learn what could be at the root of ALL these symptoms? It’s like a giant puzzle and putting them together is the key to finally getting the right diagnosis and treatment. When I look back I can see how this disease has affected every aspect of my life and every single system in my body.

      Wishing you tons of luck on getting your diagnosis and hoping the aspirin helps!! xo Michelle

  2. THIS. I knew there was a connection. Thank you heaps for sharing this information, Michelle Dellene. I’ve lost so much hair in the last year. My boyfriend doesn’t seem to notice and says I’m exaggerating when I tell him handfuls come out sometimes. A GIRL KNOWS HER HAIR! I hope the hair rinse works what a great idea! <3

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