I haven’t updated you since mid-September, basically because good news is not on my side just yet. I went through a short spurt in the last update or so where my hair was growing back, but that didn’t last.

I’ve been pretty depressed about this new part of my life. I feel ugly, anxious, defeated, and so many other feelings that creep up. Being a hairstylist for the past forty-one years and not ever running into a client with this situation is alarming to me. Being a hairstylist and having a hair issue myself is personally devastating.

In late July, I had routine bloodwork done for my yearly physical, and it showed that my thyroid TSH levels were high again. My doctor increased my Levothyroxine (a thyroid hormone) slightly, and I was retested six weeks later. My levels were back in the normal range, and my doctor stated that it was great. I was in the normal range but not optimal based on all the reading I have done. I want to be and stay in the optimal range.

Right at that timing was when my hair began falling out more and at a more alarming rate. Hashimoto’s thyroiditis and Alopecia often go hand-in-hand. I am trying to focus on whole health; working on both diseases to get my whole body out of ‘dis-ease’ & distress.

Alopecia Areata is when round bald spots are present on your scalp. I started out this way but it has advanced into Ophiasis Alopecia. Ophiasis is when the hair over the ears and around to the back nape area are without hair – think of it as the reverse of when older men go bald on top but still have the horseshoe of hair over the ears and in the back. I am fortunate to be able to hide it with what hair I have, but I fear that will also fall out. So many people tell me it’s not that bad, that I have thick hair, but I don’t, I’m a stylist, I know how to make it look fuller – it’s my job.

I saw my dermatologist this week, and I was given more scalp injections in the smaller patches inside my hair. The nape and ear sections don’t respond to injections, so that area was not done. She also submitted the appropriate paperwork to get approval for Olumiant, a new drug that has shown good results in hair growth even on patients who have had no hair for thirty years! The downside is, of course, the side effects, as with all medications, and the cost, which is currently an insane $2200-$3400 per month. I cannot afford that (who can?), but if I get approved through the Olumiant trial, I would pay $25 per month at the most. Olumiant is a JAK inhibitor that helps treat RA and AA. You can read about it here. The more unsettling part of the side effects is that blood labs and such are checked regularly, every three months. I was resistant, but I am also super depressed about this alopecia. My dermatologist told me to embrace baldness, but I can’t.

We ALL have stress in our lives; it’s inescapable. My way of thinking is to do everything I can to reduce the level of stress and try to avoid stressors. I’ve been in much worse spots in my life, and I got through it so I know I can again. I also know this is not a life or death illness, and for that, I thank God. I’ve always been an empathetic person, and this has increased my knowledge, awareness, and empathy for others’ unique crosses to bear.

Sharing my story is a way to process it for me and a way for others who share a similar situation to not feel alone and in despair as I often do.

Below are a few pictures of my current hair loss.