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 🙂

 

New Hairs

I appear to be sprouting some new baby hairs!

I’m fairly sure (she says tentatively) that I have some new hairs growing in my bald spots. Basically, when I scrape my hair off my forehead, the areas where I was receding to points either side of my fringe seem to be less pronounced. I’m not entirely sure, but I no there are a few baby hairs (finer, softer ones) around. I’ve tried to take some photos so you can see, but it’s not the easiest selfie to take and I realised that it was my son who took the photos last time. Anyway, Here’s how it looked before:

Hair loss on my forehead
Hair loss on my forehead

And here’s how it looks now:

Forehead 2     Forehead 4

The photos (not the best quality, granted) are of both sides of my forehead and it certainly looks to me like the baldy bits have been filled in a little bit. I’d say that over the tops of my ears, the hair loss is just the same as previously.

On my last appointment with the NHS (No Hope Service) dermatologist, she said that the biopsy had not been able to determine which type of alopecia I had. However, she said she was certain it was a type (like frontal fibrosing alopecia) where hair loss is permanent. Explain the new hair growth then!

Hairs have also returned to other parts of my body, including my eyebrows. They’re not exactly full, but they are slightly less sparse than before and there are even some hairs inbetween my eyebrows now, like before my body hair fell out in July.

I’ve slackened off on using the Dermovate steroid lotion, as the dermatologist said to use it 2 weeks on and 2 weeks off. It’s also been 2 weeks since my last Indian head massage, due to lack of time – but I’ll get back on track on Friday. I’ve had the last of my 3 initial acupuncture sessions, and my next one is in December to maintain the good work. I’m taking my supplements and applying my essential oil blend the night before a hair wash – leaving it on overnight. I’m washing my hair in sulphate and parabens-free shampoo and conditioner. I’m sticking rigidly to my yeast, egg white, cow’s milk, wheat and gluten-free diet. I’ve also started going for a walk at lunchtime for half an hour to get some exercise in – as I’m sure that will help too.

All good!

Bye for now 🙂

Rachel x

 

 

Poo

How the number of bowel movements I have per day is relevant to my hair loss!

It may not be the nicest topic, but I think it’s relevant to my hair loss, so bear with.

A couple of weeks ago I received the results from food intolerance test. Today, I had a telephone consultation with a nutritionist. It’s a service the food intolerance test people  offer and I’d successfully managed to put it off thus far, thinking I was doing fine. I’d sussed some foods out that didn’t contain my 3 main reactive ingredients – yeast, egg white and cow’s milk. But oh, how wrong I was! Just a couple of minutes into the conversation, it seemed that most things I’d been eating were off limits. Whoops!

Bowl of fruit - healthy eating help alopecia

Firstly, she told me to exclude the foods I was borderline reactive to – these include gluten and wheat – as well as those foods I was very reactive to.

Me: “Ah yes, I have been doing that. I’ve been avoiding gluten, so I’ve been eating rye bread.”

Nutritionist: Sharp intake of breath. “There’s gluten in rye – you can’t have that….or spelt and barley.” (Oh dear)

Me: “I’ve been doing well avoiding cow’s milk. I’ve been having soya milk.”

Nutritionist: “Mm, well ok. Better to have almond milk though as soya products are hormone disruptors.”

I was also dismayed to hear that peanuts and alcohol of any kind were not advised while my ‘gut is healing’, that gluten-free could only really be achieved by baking your own bread, that any kind of chutney/vinaigrette/mayonnaise (i.e. food made with vinegar) is out of bounds, as well as most things shop-bought. Even carton juices are a no-no for me!

Instead we talked making pancakes with bananas, using chia seeds instead of eggs (no, I don’t know either!), ghee (pardon?), rice, millet, quinoa and oats.

Despite the nutritionist’s strict dietary plans for me, she really was very helpful. One thing that cropped up in our conversation (and this is the point of my post), was bowel movements. I said that with the modifications I’d made to my diet so far (obviously not as many as she would have liked!), I had noticed a distinct increase in the number of bowel movements I had per day – I mean some days I would go 5 times! She said that a normal number of bowel movements per day is 2 to 3. Well, this was news to my ears! I’d only ever gone once a day at best – some days not at all. The nutritionist said that I’d been suffering from constipation. This would have been caused by eating the foods my body is intolerant to. These foods would have caused irritation in my stomach lining and so foods would have been constantly maldigested. She said that malabsorption can also cause bloating, joint pain and a whole host of other symptoms. So, 2 to 3 times eh? Who knew?

ANYWAY…. back to hair. The nutritionist said that every physical condition we develop is related to what we put in or on our bodies – and toxins in our foods, toiletries etc. can do a lot of harm. She said that when you heal your gut, everything else falls into place. She said that alopecia is an auto-immune disorder and that there is a link to intolerances. Mm… interesting…

I’ve had chicken and vegetables for tea.

Till next time 🙂

Rachel x

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

Food Intolerance Test Results

I find out which foods I’m intolerant to in order to halt my alopecia

In an attempt to halt the progression of my frontal fibrosing alopecia, I had a food intolerance test. And the results have arrived! It turns out I’m intolerant to yeast, egg white and cow’s milk, with a borderline intolerance to gluten, wheat, cashew nuts and a few others.
York Test
I’ve decided to cut out only those foods I’ve got a definite reaction to. With intolerances, a reaction means that certain foods cause antibodies to be raised. I suppose this means my body doesn’t like certain substances and is in conflict with them.
So, all keen to remove the offending foods from my diet, I go to the supermarket. After an hour, I’m more or less convinced that there is only a handful of foods in the whole shop that can eat! I’m excluding fruit and veg from this, because there’s loads of those – but there are only so many you can eat! The issue seems more to be finding yeast, egg and milk free snacks and lunch box items. I like foods with a bit of substance! How can you find an alternative for a sandwich, pie or pizza?
On the bread front, I thought I’d go for German pumpernickel (heavy dark rye bread). But I discovered the one in Asda it had sunflower seeds in it. Sunflower seeds are only a borderline intolerance but I thought it best to avoid them just in case. So, I came away with Ryvita and some tasteless flat chia seed wraps. Ho hum.
I’ve substituted butter (sniff – I love butter) with coconut oil. In fact, I seem to use coconut oil for everything. I even bought a cheese substitute that was made out of coconut oil!
Anyway, I’m sure I’ll muddle through. I’m going to have a 6 week break from these foods and reintroduce them gradually. I want to wheedle out the culprits with regard to my hair – or, at least find out if there is any link.
Health kinesiology claims to be able to switch off intolerances and allergies by the way. Always worth investigating.
I’m going for my biopsy results tomorrow, so I’ll let you know what was said.
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.

Acupuncture Update

An update on my acupuncture session – an attempt to halt the progression of frontal fibrosing alopecia

Wow amazing! (In brief)

The slightly longer version:

I turned up a little apprehensive, having never had acupuncture before. But I needn’t have worried at all. The acupuncturist was lovely and put me completely at ease. He spent the first hour and a half (!) talking through an taking notes on my background, lifestyle, eating habits, sleeping habits, relationships, stressful episodes, major life events, home life etc. etc. At the end of the questioning, he put many aspects of my life together and deduced that my fire and water elements were out of kilter. This isn’t exactly how he phrased it, but it’s more or less what he was saying. In fact, he explained that China (where he is from) and the eastern world have so many more words for certain spiritual and philosophical concepts that it was difficult to put it into English for me.

Yin Yang

Next came the part with the pins. First he felt my back and decided that the water element was more of an issue than the fire element. He spent some time feeling for the points to insert the pins before marking my back with a pen and inserting them. It didn’t hurt, as there are apparently not many nerve endings in the back, however, one of the pins did hurt when he inserted it. When I said ‘Ouch’, he said, ‘That hurt because it represents your heart, which has taken a battering recently’ (true).  He left in the pins in for a few minutes and then took them out. Next I lay down on my stomach and he inserted (and immediately removed again) two pins on my ribs. He explained that he was balancing the flow of energy by removing blockages. He mentioned that he felt there was a wood and metal blockage that needed removing. Finally, he inserted pins in my armpits. When he removed the final pin, I felt an electric shock go up my arm and into my hand. The acupuncturist said that was the sign that a big blockage had been removed. After each set of pins had been removed, he felt my pulse. Apparently, here he could feel whether the acupuncture was working and blockages were being removed. He said they were 🙂

acupuncture to help with frontal fibrosing alopecia

So, the big question… would the acupuncture help to halt the progression of my frontal fibrosing alopecia? I asked the acupuncturist who said he thought it have every chance of helping. He had previously mentioned that he thought it would have been triggered by stress, as every illness is usually a reaction to life events and the reactions they cause in our physical bodies (mmm… as I thought). He also said that by removing the blockages and allowing the free-flow of energies, he would be addressing my problems on an emotional, physical and spiritual level.

I found the whole experience strangely relaxing and fascinating, as the acupuncturist was so enthusiastic and knowledgeable. I have a lot of respect for eastern medicine, which tends to treat on a more holistic level, and I’m looking forward to going back for another two sessions.

Just found this and I think it explains quite well how Chinese medicine is based on 5 elements: wood, water, fire, metal and earth http://www.energymedc.com/five%20element%20healing.htm

Bye for now 🙂

Rachel x