Other People’s Hair

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.

See you soon

Rachel 🙂

 

Biopsy Results

My biopsy results for my alopecia diagnosis surprised me!

I got my biopsy results on Sunday and they were………………………….. inconclusive! This was the ensuing conversation with the dermatologist:

“So, is that unusual for the biopsy results to come back inconclusive?”

“No, not at all. They’re often inconclusive.” (What, really??)

“Oh….. So, what does that mean?”

“Well, it is saying you’ve got alopecia, but we don’t know what type. It could be frontal fibrosing alopecia or it could be another type of scarring alopecia. It doesn’t look like alopecia areata as that it more patchy hair loss all over.” (Well, I could have told you that!! So, all we’ve established is what we already knew a month ago!!)

“Right, so what happens now then?”

“I’ll ask the consultant if he wants to do a deeper biopsy, or not.” (Why on earth didn’t he just do a deeper biopsy in the first place if the more superficial ones are often inconclusive??)

“Right.” (I’m going private…)

So, I get home and dig out my private policy details. You may be wondering whether I haven’t used this before now. The reason is that my hair loss hasn’t progressed much (if at all – hard to tell) since July. I was already booked in for the biopsy with the NHS when I realised that I might was covered under a policy my ex husband had taken out. I decided that if I went private at that point, I would only end up having another biopsy, so decided to wait for the NHS biopsy results before I investigated the private route. Granted, the results from a private biopsy would have come back much faster (the NHS results took a month), but as my hair loss had slowed, there didn’t seem to be a rush.

Anyway, I rang BUPA and was given consultants’ names in my area etc. etc. and at the end of the phone call was told there was an excess to pay of £500 on the policy. What?! So, in actual fact, what I’ve decided to do is to press the NHS for a deeper biopsy and take it from there.

So, there we are! I’ll keep moving forward.

See you soon 🙂

Rachel x

 

 

Biding My Time

A list of the results & currently waiting for and what I’m doing in the meantime

At the moment I am just waiting…….

I am waiting for:

  1. My biopsy results to come back (another two weeks I think) – these will confirm (or not) the diagnosis of frontal fibrosing alopecia
  2. My food intolerance test result – this should be back in about a week’s time and should highlight any food intolerances I might have, which may or may not have been instrumental in causing or increasing the rate of progression of my frontal fibrosing alopecia
  3. The effects of balancing my energies with acupuncture to be felt

I’m also continuing to:

  1. Eat healthily – apart from the odd sweet treat and glass of wine – well, a girl’s got to have a life!
  2. Include a lot of protein and iron in my diet
  3. Listen to meditations and take time out when I need to keep my stress levels low
  4. Use my essential oil blend on my scalp (as well as applying the prescription steroid lotion)
  5. Hang upside down to increase the blood flow to my head
  6. Have an Indian head massage once a week
  7. Take supplements for hair, skin and nails
  8. Use a chemical-free shampoo and conditioner

N.B. For more of what I’m doing to help slow the progression of frontal fibrosing alopecia, read my previous post https://hairlossdiary.blog/2017/09/19/slowing-down-frontal-fibrosing-alopecia/

One thing I will say is that the steroid lotion is very thin and watery (although most definitely NOT water, as it smells very strong – a bit like nail varnish remover). When I apply it to my scalp, it can run down my face and into my ears. As it is a steroid, I am careful to wipe it off my face, as I know that steroids can thin your skin. I also have to be careful to remember not to apply it and then use my hairdryer on my hair, as it is highly flammable! The first dermatologist I saw said it has a very low success rate for frontal fibrosing alopecia, so I am wondering why I’m bothering to persevere with it. But hey ho, I’ll give it a try like everything else.

Biopsy

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!)

Dermovate lotion for frontal fibrosing alopecia

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.

Stitches after biopsy for frontal fibrosing alopecia

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 🙂

See you soon

Rachel x