When I realise that no one notices your imperfections anyway.
One thing I’ve noticed since starting to lose my hair to alopecia, is other people’s hair! It’s one of those things isn’t it? If you are pregnant then you seem to notice lots of other pregnant women, and if buy a silver Ford Fiesta then you suddenly notice many other silver Ford Fiestas on the road. It’s the same with hair. If you are losing hair, you see a vast number of women with thinning or receding hair everywhere you look. Were these women always there? Of course they were – I just hadn’t noticed the fact they had less on top before. Even women I know quite well – friends and acquaintances – I’m now detecting bald spots, wide partings and sparse sections of hair that I swear weren’t there a couple of months ago!
So what does this mean? Well, it obviously means I’m quite unobservant generally, but then that’s a good thing, isn’t it? Because if I’ve never noticed other people’s hair loss, they, more likely than not, won’t notice mine!
In other news – my receding hairline has slowed down and rather than put myself through another biopsy to determine the exact type of scarring alopecia I have (frontal fibrosing or otherwise) – either on the NHS or privately (with an eye-watering excess of £500 to pay) – I’ve decided on the following plan. My GP suggested having a consultation at the surgery in a few weeks time to take stock of the situation and see at what rate my hair is receding (or not, as the case may be). If I’m losing hair at a worrying rate, then I’ll be referred back to the dermatologist for a deeper biopsy, and if not, then I’ll leave it for the moment with a view to restarting the dermatology process all over again in the future, should I need to.
A look at how the menopause might be a factor in my frontal fibrosing alopecia.
I realise that in this blog I haven’t yet mentioned my age. I’m 51. I understand from what I’ve read that frontal fibrosing alopecia is a condition that typically affects post-menopausal women (although the condition is rare). Having gone through the menopause relatively early at 47, I’m definitely in the post-menopausal category. I’ve also read that FFA is possibly a hormone-related condition, although the exact cause hasn’t yet been determined. This would be consistent with the fact that it affects post-menopausal women. Menopause causes your estrogen and progesterone levels to significantly drop.
Up until this point I had been congratulating myself on how well I’d done with my menopause – only a year or so of night sweats, a bit of brain fog and a couple of years of HRT and it was all done and dusted with no lasting issues. Then early last year, I noticed that my right eyebrow had lost a lot of its hair and that the outer part of it was practically missing. I put it down to stress at the time, as I was experiencing a lot of stress in my personal life.
I didn’t really notice any significant hair loss from my head until this year when lots seemed to fall out at once. I’m not sure whether this is typical of FFA, which I thought was slow and progressive hair loss over time. Anyway, a lot fell out at once in July this year and since then has not grown back, as presumably the hair follicles have died. This has left my hair quite thin on the sides of my head above my ears.
At the same time a lot of my hair came out, I noticed that my body hair (on my arms and legs above my knees) seemed to have disappeared too. These parts of my body felt strange being totally smooth. These hairs do appear to have grown back now, but are finer and softer than they were before – and are almost imperceptible. My underarm hair seems to have gone much finer and softer too. The hair on my face has also been affected. My face feels totally smooth and I can’t see any hair on it, apart from a couple of strands of hair – one that has always grown from my chin and one that has always grown from my right cheek. These hairs used to be quite thick, but now they feel soft and thinner, like the hairs that have grown back on my arms and legs. Another thing I have noticed is that a few weeks ago I had no hair at all between my eyebrows (I always used to have a bit of hair here before a lot of my head and body hair fell out in July). Some of this has grown back, but again it is much softer and finer and you have to look very closely to see it. I have been putting my essential oil blend (see previous post) on my eyebrows, so this might have something to do with the regrowth.
My mum has said that hair loss is typical of the menopause and that lack of body hair is not unusual. From what I’ve read it relates to lack of estrogen. Obviously something else is happening as well though to bring on FFA, and it sounds like much more research needs to be done to find out the exact causes and symptoms of this condition.
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.
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.
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.
In this first post I explain the first stages in being diagnosed for frontal fibrosing alopecia.
I had an appointment last Saturday with an NHS dermatologist. He looked at my hair, which had been thinning quite noticeably for a couple of months, and looked at my scalp. “It looks like frontal fibrosing alopecia,” he said. He offered no further explanation, but luckily, I had researched this particular condition online and knew a little bit about it. I was shocked. Frontal fibrosing alopecia is irreversible (the hair doesn’t grow back, as the hair follicles die).
The dermatologist ordered a prescription for a steroid lotion to apply to the troublesome areas of my hair (front and sides) twice daily and said he’d book me in for a biopsy. I had the biopsy done yesterday (yes, the appointment through came quickly!)
The steroid lotion: Dermovate
The biopsy appointment meant I had to give a potted history of my hair loss again and I discovered that the consultant was a specialist in my type of alopecia. He shone a bright light on my scalp and said the hair follicles looked “inflamed” (not good).
The biopsy itself was fine. The consultant marked a spot with marker pen in the centre of the hairline on my forehead from where he was going to take the tissue sample. He then injected local anaesthetic into my forehead and checked that that area was totally numb (it was). Actually I have no idea what he did next, as I couldn’t feel it and preferred not to know. But tissue sample taken, he put a couple of stitches in the tiny wound. I’m not sure if everyone has stitches but I got the impression from the consultant’s chat to the nurse that my wound was bleeding a bit more than the norm. He also sprayed it with a cold spray that he said would help stop the bleeding. This gave me a bad hair day for the next 24 hours, resulting in me wearing a scarf to work the next day.
This is the tiny stitched wound about 2 hours after the biopsy.
I’m now waiting for the results, which should be back in 4 weeks time. Apparently, it tests to confirm the suspected frontal fibrosing alopecia (FFA) and skin conditions such as lupus and lichen planopilaris.
In the forthcoming posts I’ll tell you the history of my hair loss (it goes back 18 months or so), how I feel about it, what I’m doing to help myself, and I’ll pass on tips that I’ve gathered so far on managing and living with the condition. I hope you find these posts useful and you are most welcome to my small corner of the internet 🙂