The Background

A look at the symptoms I experienced during two years leading to the discovery I had frontal fibrosing alopecia.

I’ve always had a bob and my hair has always been fine, but relatively thick and in good condition. In August 2015 I felt my hair was dry and was getting easily tangled, so I put it down to “the summer heat” and had it cut short. This seemed to improve matters and it gradually grew back into a short bob again.

In mid-2016 I noticed some strands of hair falling out. They seemed thinner than my normal hair and I tended to notice them when I was at my desk at work, as they tickled my face as they fell. I didn’t think much more than “That’s unusual”. Another strange thing I noticed was the loss of quite a few hairs from my right eyebrow (my eyebrows used to be quite bushy) and my eyelashes. A lady at work suggested I get tested for a thyroid condition, which I did. It came back negative. What was highlighted from the blood tests was that I was very low in vitamin D. I was given a course of high dose vitamin D for 7 weeks and since then I have maintained my levels by taking D3 bought from the supermarket. A few months later, a problem I had had on and off started to become more frequent. This was crepey eyelids, which would start as hot red patches on my eyelids and would eventually flake bits of skin. Each episode of this lasted 2 weeks or so and I went to the GP. I was told it was eczema.

Thinning eyebrows - a symptom of frontal fibrosing alopecia

My right eyebrow now

In June 2017, I was colouring my hair with a semi-permanent and noticed in the mirror that my hairline on my forehead looked a bit different. I decided it looked a bit ragged. I didn’t think too much of it but decided to keep an eye on it.

A few weeks later my eyelids started playing up again and so I went back to the GP. I pointed out the half missing right eyebrow and the ragged hairline at the same time and was told that it looked like an allergic reaction. I was given Diprobase to smear on my eyelids, Dermol cream wash to wash my face with and was told to buy over-the-counter allergy tablets. This seemed to help my eyelids and I haven’t experienced another episode since.

Allergy tablets

I happened to notice in July this year that my hairline was looking worse and I could see that the hair on my temples and over the tops of my ears was thinning. I looked up my symptoms online and compared some images of my hair with some Google images. Some of the Google images showed frontal fibrosing alopecia, and they looked very much like what I had (receding at the front and sides) – and some red dots on the forehead, which apparently indicated inflamed hair follicles. I went back to the GP and told her I’d like a referral to a specialist. I was told that my hair loss was “minor” and to see what it was like in a year or so and then come back. I wasn’t taking that lying down, so I went back to see another doctor the next day and she was more than happy to give me a referral.

The previous blog post picks up the story from there.

See you next time 🙂

Rachel x

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