Extreme Hair Loss

[LauraMk30]

Hello everyone, I hope your all ok & doing somewhat as well as you can be.

As you can see from the picture I've attached, I have excessive hair loss.

That is 1 WEEKS worth of hair.

I saw my friend/hairdresser yesterday & she said I need to see a trichologist ASAP. my hair was thinning a few months ago with a few hair shedding episodes. But now it's totally thinned & I have patches on either side of my head, the back of my head hair is the worst as I have a permanent bold parting with no hair. Running through my hair with my fingers results in 300 + hair loss.

It took years too get my hair into a stable strong condition. It's been 3 months now & my hair went from collarbone length to now just under my ear. I don't feel like I have any hair as it's that thin. My scalp is visible & I'm beginning to hate myself.

Every morning I have hair on my pillow, or all over the back of my pjs, washing my hair is a nightmare as more hair literally just falls out when lathering shampoo & conditioner in it. My hands are covered in hair.. which for me is very upsetting.

I can deal with my ongoing rollercoaster of events but I cannot deal with this.

This illness/condition/disease/disorder or whatever it may be, has literally ripped my soul, my life, my mind apart, & now it's taking my hair away from me.

I'm sat in my black dressing gown, looking down at the moment & yet more hair fallout (clumps) & I'm frustrated, I'm in hell. I feel angry that my hair was the only thing untouched & now it's being stripped from me as well.

I have a health/symptom journal, I have pictures, I have evidence to prove to my doctors of everything that's happened over the last several months. It's plain as day that something awful is happening on the inside of me & reading it out loud expresses how it's effected/effecting me.. & all I've asked for is a little help..

I'm looking at wigs online, I'm 31 & feel 91. I want to know what the hell is going on, but I have no one to talk to, no professional to confide in, my GP surgery have let me down tremendously, since Feb 2017 I've been battling this , I can add another 13 years on top of that, with no diagnosis no treatment, I'm just a complex caseload of problems that no one wants to challenge.

I have yet another Contrast CT scan on 14th Nov. Not received any previous results, still in the dark, but worse off.

I have changed my GP to a male doctor who is new. And he spoke about some more blood tests e.g. Celiac, Anaemia, & other deficiencies but didn't explain when I was due to have them. So I called in & left a message for him. He called me back to say he had forgotten to write the blood form.

I just seem to be this unwanted, forgotten, neglected, nuisance to the NHS. My mental health has obviously been effected, it's taken a while to really get me down but it's hit me like a ton of bricks.

So much has happened since February & I really haven't had the time to deal with one thing as it's not been one thing at a time. It's been a wrecking ball of unfortunate events to my body in such a short space of time. & I guess disassociation & delayed thinking has led me down this path.. a place where I do not know who I am anymore.

I understand some people's health history & present conditions are as complex as mine, but I read so often of how many of you have a wonderful team of consultants, doctors, & all around support systems. Knowing there is help out there is comforting but for people like me that help comes at a price. I've waited 13 years on & off to find a good consultant under the NHS, but ended up waiting & wondering in the dark like a lost lamb only to find out that it's not going to happen, I'm not them I am me- &

Good things don't happen to a girl like me. It just doesn't..

I'll let you know how I get on at this hair appointment, hopefully I will be able to understand at least one thing out of my exhaustive list of mysteries. X

[Essie13]

Personally for me, when I was losing hair that badly was when I was starting to have a flare-up. I would go to the walk-in centre and get it checked out. Sometimes, doctors who haven't see you before tend to be more helpful and listen to you more. Do you have any other symptoms such as moderate to severe fatigue and loss of weight?

[Tiras in reply to Essie13]

I can sympathize with you. I have extreme hair loss, not on my head in the past but, it is thinning rapidly now. My issue has been body hair! I am a guy and I have little to no hair below my shoulders. I have no underarm hair. No chest hair, no hair on my legs, and yes, I have no hair in private areas. What little body hair I have it grows very slowly, then gets only an 1/8 to 1/4 inch and comes out. You actually have to look very close to find any body hair. This is embarrassing for me especially when I have to go to doctors and or examinations. I am in a lupus study about skin rashes, so. Every month I have to go to a research center, there I am examined with a team of 6 technician (guess what all females) from head to toe for rashes and photos taken. So you can imagine how embarrassing that can be. They have ask if I would participate in a hair loss study recently.

Just a reply to let you know you are not the only one of us who is experiencing hair loss!

Wishing you the very BEST!

[misty14]

Hi Laura

I'm just so sorry you are going thru such hell , not finding answers and being badly let down by the medics. Whereabouts do you live because if you are near London there's a really good consultant at London Bridge hospital that Wendy on here has seen!. A Dr K and others have too on forum and been pleased with outcome. It is private but worth thinking about as you really do need proper care asap!. What happened with Gastro consultant and test results?. X

[Lupiknits]

The biggest warmest hug I can possibly give is here for you. I have no answers I'm afraid, and it doesn't help much for me to express how much I'm raging at the way the NHS is neglecting you. Just a hug x

[Hidden]

I feel for you. Your doctor is wise to suspect nutritional deficiencies. I was never bald but was losing hair all over. I was blocking the drain all the time.

It's improved a lot on supplements. These links should give you good info. I'm not a Dr so I don't like to recommend dosages. Remember though that the thyroid can also be suppressed without enough iodine, selenium and b12.

drmyhill.co.uk/wiki/Hair_loss

drmyhill.co.uk/wiki/Nutriti...

[soootired]

I can'advise on much I'm afraid, but do empathise about the hair. My hair was falling out and call it vanity but it distressed me more than any of my other symptoms did. For me, I was already on hydroxy but began Azathioprine and it helped... proving that the hair loss was definitely AI related.

I hope you get some answers soon, I'm sorry I can't give you anything constructive, just my empathy.

Take care and please let us know how you get on. 🌻🌹🌼🌺🌹🌻

[hayley3]

Can you get Nioxin in the UK? I am not sure. I've read that many lupus patients have had success with it, including me. I also have Hashimoto's though. I feel your pain especially when washing hair...it comes out and gets tangled in your fingers....just an awful thing. I now only wash my hair only when necessary.

[Cann]

Yes, when I have a flare-up and my digestion is affected, my hair falls out.

Like you when mine started 17 years ago, I had little help from the medical profession.

I was referred to a dermatologist who stated there was nothing wrong with my skin and she felt the only way was to get my body well and my hair could come back, but there was no guarantee.

I wasted so much time and energy worrying about my hair, seeing people and trying things.

In the end I got a wig and got on with my life. I shaved off what's left and go about the house and chores without anything or a hat if cold and wear a wig when I go out or a hat.

I wonder what all the fuss was about now. It's only hair after all - I use to shave it off my legs, underarms, etc. when I had it, but worried so much about the hair on my head. It doesn't hold me back now as much as the flare-ups do, so I have to manage my life very carefully.

Do your best not to stress over it; I am sure you are a lovely person and it is the soul and spirit that counts - find meditation and relaxation groups to help you de-stress, possibly in the medical profession although I had to find my own to deal with the stress.

I ensure I rest when I need to and exercise likewise, but as many of us have to, I limit exercise and alternate with rest.

I eat a wholesome healthy diet of food of high nutrient, but only when I am hungry. Coeliac was one of my problems - no cure, but it is not just wheat - it is all grains for me and allergy to dairy. I was allergic to eggs for a long time and I read the flu vaccination is grown in eggs. Also, dental anaesthetics can contain eggs and I had lots of dental treatment. Since avoiding chemical drugs, I find I am a lot better.

I don't regret what I have learnt - so much! Life is a learning process.

Yes, do let us know how you get on. We are all different and what works for one, doesn't for another, but it is good to see what works for others. Take care.

[Cal66]

Hi

Your really going through a bad time and you don’t just need medical care, but you also desperately need someone to talk to. You said that you have changed your GP & he seems much more sympathetic than your previous GP, why not wait until your blood results are back, make a double appointment with him & explain to him how much the long journey you have been through has affected your mental state & you need to see a councillor or someone similar to talk to.

As for your hair, mine is always blocking up our animal hair Dyson hoover and I am also worried about it as it it has taken me a great many years to grow long & now it is getting thinner each day & I don’t want to get it cut because I like it long,so I really know how you feel about everything.

[Chanpreet_Walia LUPUS UK]

Hi LauraMK30,

I am sorry to hear that you’re experiencing a large amount of hair loss at the moment.

We published a blog article on coping with hair loss which I hope you will find helpful: lupusuk.org.uk/coping-with-...

Wigs are available from the NHS but patients need to pay for them unless they qualify for help with charges. Up to date costs of NHS wigs and exemption criteria can be found here: nhs.uk/NHSEngland/Healthcos...

We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u.... We can also provide you with LUPUS UK contacts who you can speak to over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at [e-mail]

Keeping a health journal is a great idea! It allows your doctor to monitor your health between appointments which is important in ensuring you receive the correct advice and treatment.

Good luck with your upcoming appointment, let us know how you get on.