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

 

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