Needles

Food intolerance testing and acupuncture to try and get to the bottom of the underlying cause of my frontal fibrosing alopecia

This week is a week of needles for me. Firstly, I’m taking a food intolerance test, which involves pricking my finger with a needle for the blood sample, and secondly, I’m having an acupuncture session. I’m trying both of these to see if I can pinpoint (see what I did there :-)) the cause/s of my frontal fibrosing alopecia.

Intolerance Test

It was suggested a while back by a GP that my eyebrow loss might have been cause by an allergy. This coupled with what I call ‘crepey eyelids’ – something which happens to my eyelids occasionally and without warning – has led to me taking allergy tablets on and off. I know food intolerance is slightly different to allergy, but a friend who also has frontal fibrosing alopecia says she has taken the food intolerance test and it has highlighted some intolerances, which she now excludes from her diet. She says that her hair has now stopped receding. Worth a try anyway!

The intolerance test my friend used and which I will be using (when I summon up the courage to prick my finger) is York Test. The test is in two stages. The first simply identifies whether you have any intolerances, with a positive or negative result. If you get a negative result you get your money back. This first test costs £24.99. The second test then tests for and identifies the food/s you are intolerant of from a range of 158 potential foods. You have a choice of which type of test you would like at this point and I have chosen the Food & Drink Scan for skin conditions (and other issues). The other options are the IBS Diet Programme and the Ideal Weight Programme. If you like, you can bypass the initial test, pay for the full test only and request that your blood sample is tested for on the correct programme for your symptoms. This is what I have done.

Acupuncture

My holistic therapist friend has referred me to an acupuncturist. I’ve read that a lot of people with frontal fibrosing alopecia have tried acupuncture. As with the above, it’s worth a try. I’ve never had it before and don’t know what to expect, but I’m quite excited to find out. I’ll report back in another post!

See you soon 🙂

Rachel x

The Menopause & Hair Loss

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.

Hair loss over my right ear
Hair loss over my right ear
Forehead 1
Hair loss on my forehead
Other ear
Hair loss over my left ear

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.

Till next time 🙂

Rachel x

Slowing the Progression of FFA

My Attempts To Slow Down Frontal Fibrosing Alopecia

There’s quite a lot (I have discovered) that I can do to try and halt / slow down the progression of my frontal fibrosing alopecia.

  1. My hairdresser told me to eat more protein, such as chicken. I like chicken, so that Steak - good source of protein for frontal fibrosing alopecia managementone is easy. Someone else with the same condition has told me to eat more red meat – so for the first time the other day I cooked steak. In order to make sure I get a good quality protein every day, however, I have started taking spirulina powder in orange juice with my breakfast.
  2. The specialist who did my biopsy said to take iron. I had already researched this for myself and had been taking it for a couple of weeks prior to my appointment. Rather than take iron tablets, I have been taking wheatgrass, which is rich in iron. I add this to the spirulina in my orange juice.
  3. I have added two new drinks to my daily regime too. One is green tea, which I now drink all the time at home and is full of anti-oxidants. (At work I tend to stick to normal black tea.) The other is beetroot juice. Beetroot was mentioned by my hairdresser as being good for hair. When I looked it up online I found it contains protein, iron and nutrients such as manganese, copper, vitamin B6 and folic acid. Skin, hair and nails supplement for frontal fibrosing alopecia
  4. I am taking a supplement as recommended by the dermatologist I saw initially. It is for hair, skin and nails. Zinc is one of its active ingredients for hair. Among the other ingredients is iron, so I probably need to watch that I’m not taking too much iron. The one I use is called Perfectil, but there are supermarket own hair, skin and nails supplements too.
  5. I have a friend who is a holistic therapist. When she heard about my alopecia, she suggested a weekly Indian head massage to stimulate the hair follicles. On a Friday, she massages my head and then I massage hers. An added benefit is that the treatment is deeply relaxing.
  6. Searching about on the internet, I discovered a blend of essential oils that had been highlighted in a Scottish study to promote hair growth in 44% of the study group. The blend is as follows:

4 tsp. grapeseed oil + ½ tsp. jojoba oil
2 drops cedarwood essential oil
2 drops thyme essential oil
3 drops lavender essential oil
3 drops rosemary essential oil

My holistic therapist friend made up the blend of oils for me and I use them when             my hair needs washing, as the rest of the time I am using the steroid lotion I have               been given on prescription. This means that I apply the blend every two or three                 days.

  1. I have swapped to a shampoo and conditioner that don’t contain silicones, sulphates, parabens or colourants to try and minimise any further damage to my hair and scalp.Laptop
  2. I am taking more time to relax. For me this mainly means switching my laptop off earlier in the evening and going to bed on time. If I wake up in the night to have a little worry about my hair (or a million other things) and find I can’t get back to sleep, I listen to a meditation. I have a link to it on my phone so I can find it easily. The meditation I have chosen takes 20 minutes and helps to declutter your mind. It works as it calms me down and I often fall asleep listening to it.
  3. At night before I go to sleep, I hang upside down – not exactly like a bat, but with my head over the edge of the bed and my legs up the wall. The point is to get the blood to my head. I have no idea whether this is beneficial, but it feels like it might be and gives me something to do while I’m flossing my teeth!
  4. I used to enjoy swimming, but since I’d rather not get chlorine on my scalp at the moment, I have changed my exercise to walking. I do this whenever I get the chance (not that often), but some exercise is better than none to get the circulation going.

See you soon 🙂

Rachel x

 

How I Am Coping With My Hair Loss

10 Positive Ways I Have Found To Cope

Sometimes my hair loss seems like a bad dream I will eventually wake up from – but that’s not happened yet. It’s still early days for me, I know, with a part diagnosis last week and biopsy results still pending, but I have to remain positive for the time being. I still have to go to work, pick up from school, go to the supermarket, meet up with friends etc. etc. I can’t (and won’t) let it defeat me.

So, following on from my last post about my feelings towards my hair loss, here is a list of 10 ways I have found that help me deal with what is happening:

  1. I count my blessings – Sounds corny but it works. There are sooooo many things I am very grateful for and happy about in my life. There really is always someone worse off than you.
  2. I look after myself – I’ve started going to bed on time, eating super well and relaxing when my body’s tired (something I’ve never been able to do in the past). When I wake up in the night and start worrying about my hair (or anything else), I listen to a meditation (there are some great ones on YouTube) and I practice deep breathing. I stop working earlier in the evening and make sure I spend time with friends and family. I surround myself with positive people when I feel low. I go out and indulge my hobbies (e.g. singing in a choir).Healthy eating to help with frontal fibrosing alopecia
  3. I have altered my self-talk – When I’m down, I speak to myself as I know my friends and family would, and give myself the advice I know they’d give. I’m kind to myself. N.B. This is one of the most important things I have done and has made a big difference to how I feel.
  4. I have told people about my hair loss – I can imagine that some people don’t mention their hair loss to people until they absolutely have to or can’t hide it anymore. In fact, I read somewhere that nearly half of women (42% or some such figure) even hide it from their partners! For me, I’d much rather tell people. Once it’s out there you don’t have to worry about constantly covering it up. You don’t have to explain why you’re wearing a scarf or your hair looks scraggy etc. You can just be yourself. Most people I have told have been lovely about it – and have offered advice or told me about other people they know with a similar thing. I don’t think people judge you in any way for something like this – what’s to judge anyway?
  5. I have experimented with scarves – Wearing a scarf to cover up the front of my head is about the extent of this at the moment, however, I have ordered some chemo caps from Amazon just so I have them at the ready should I need them (see point 9).Chemo caps to disguise frontal fibrosing alopecia
  6. I have told my hairdresser – I told my hairdresser yesterday so that when I go back in to the salon, he knows my issue already and will be ready to help. I decided today that my hair is looking so thin all over that having it cut short is probably the best option at the moment.
  7. I have listed all the positives of having this condition – Yes, there are some! I think they’ll form the basis of a separate blog post as there are quite a few.
  8. I realise that this condition is not as bad as other things I have dealt with in my life – I recognise that if I was strong enough and brave enough to face some really tough times previously (which I did), I can certainly cope with this.
  9. I have worked out how I would feel about the worst case scenario – The worst case scenario would be that I go completely bald or that my hair is so receded or thin that I can’t not wear some sort of headwear. I have thought long and hard about how I would feel about this (because after all, it’s all to do with how we feel about things, as the condition only really affects me and no one else). After much thought, I have concluded that it wouldn’t be a disaster. Worse things happen to people and I don’t need hair from a practical point of view.
  10. I have investigated a few options for the worst case scenario – And there are lots! If I have the information and I know what the options are in advance, I can feel there is a safety net for me. So I have found out that there are wigs, toppers, an intralace system, scarves, turbans…… and just being bald!

See you next time 🙂

Rachel x

My Feelings About My Hair Loss

How I am coming to terms with my hair loss.

Well this is a weird one. In the two years leading up to this point, life has been extremely difficult and stressful. I won’t go into detail, but suffice to say, most of this stress is now subsiding and things are getting back on an even keel. In comparison with what I’ve been through over the last two years, my hair loss seems minor. The problems I have faced have put it into perspective, and I am able to think “It is only hair”. I’m also aware, however, that my hair loss hasn’t been dramatic enough up to this point to really affect my day-to-day life, so whether my philosophical attitude continues, remains to be seen!

I am lucky also in that I have a very supportive family and friends. My three children have been amazing! Also, when I told a client of mine that I had suspected alopecia, she photocopied some notes from a nutrition book about hair loss and sent them to me through the post. How kind. (I’ll share some insights from the book with you in another blog post, as the information was very useful.)

Book about nutrition and hair loss

I was told to friend someone on Facebook who lives locally (and is a friend of a friend), who had experienced hair loss. I asked her how she had dealt with it and she sent me a lot of information and photos of her hair – or lack of it once she’d decided to shave the remaining hair off. She was a true inspiration as she told me not to obsess about it, but to live my life in spite of it.

For this reason, I try not to think about my hair loss most of the time and I get quite absorbed in my job, so that certainly helps. The times I think about it most is when I’m getting ready in the mornings and last thing at night, when I have to “deal” with it. I have to put the steroid lotion on it, which means I have to look at how little hair I have in the mirror, and I have to make my hair look decent for work, which has already involved scarves of varying sizes and fabrics that I’m experimenting with. (My boss and his wife have been extremely supportive.)

Scarves for frontal fibrosing alopecia

Writing this blog post is also helping me, as I’m hoping someone in a similar situation will find it useful.

See you soon 🙂

Rachel x

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

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