Frontal Fibrosing Alopecia

[WhatTheFFA]

This is all very new to me .. I never ever heard of FFA ever ever ever.

I started experiencing loss of bodily hair including my eyebrows diminishing over 15 years ... I appear to have entered the peri-menopause about 13 yrs ago and had my first child - geriatric mum - and am now experiencing the menopause! 2 years ago, I started showing signs of rheumatoid arthritis, developed a reaction to alcohol, my skin started burning and crawling and I started to notice my hair line was changing - thinning, receding, scaling .. and scarring. I have been falling apart!! I had an NHS MySkinDoctor assessment by photograph submission - suspected FFA with treatments recommended .. no positive results. Waited for the referral appointment with a NHS Consultant ... nothing!! I got impatient and went private only to have it firmly confirmed - it's FFA, scarring, permanent, will not hair will not grow back - it will get worse! I felt like I hit the floor! She wrote to my Doc recommending referral to a particular specialist (with a wonderful head of hair) ... and that a basal cell carcinoma should be removed .. I did that privately .. my Dr thought it was nothing to worry about ... whoahhh nahh offff with it.

I had my hair cut shorter (lucky I always have had a fringe but I can't wear it up anymore, don't want to be seen when its windy weather, stopped a lot of my sports and exercising ... I have shrunk into a shelf; spend ages treating my skin and making sure my hair sits properly before I go out through the door.

Finally after 2 years I have seen the NHS Consultant .. by chance ..a cancellation! I jumped at it. I sat there bruised and stitched up from the carcinoma removal .. looking like a rabbit in the headlights. As well as levothyroxine and HRT patches, I am now on different medication, another steroid cream and a trial drug for 6 months in an attempt to create a fire wall. If I was told to put a cow pat of dung on my head now - I would!

There is no explanation as to why I have this .. it could be hormonal, stress-related, thyroid related (?) an immune system disorder where my body is attacking itself .. but its on the rise and I don't want it.

I am due to a photographic scan of my hairline to monitor it! God I miss my widows peak and yes I have seen some of the images on line ..

I don't feel I am me anymore .. I crumbled in a heap and cried. I have lost some of my spark and confidence .. I am afraid of what will come next but there is nothing else I can do ... or can I? I can't speak about it. I don't want to speak about it! There are no help groups in my area .. I just have to paint a face on and hide behind a smart suit and attempt to smile .. Sorry for this long post but its hard to accept this condition ... I don't know if anyone else has experienced any of this issues along with a FFA diagnosis and is undergoing treatment and can share their experience and how they have coped?

I’ve just seen this now. My blood tests for the dermatologist are showing high thyroid antibodies so probably Hashimoto’s. But my TSH is not high so don’t think I will be given anything. Watch & wait.

I’ve to wait a few weeks for results of a scalp biopsy to confirm diagnosis, so not on any treatment other than 5% steroid scalp lotion (Dermovate) which did ease the red/itch/burning.
I have seen people say that their thinning hair was helped by thyroid meds - but it took time. I imagine it depends on what caused the alopecia but there are so many bloody variables.

Ask for a recheck - they should tell you what the T4 is as well as TSH. I had a normal on one and borderline for the other. I pestered and repeated - mother, aunt, grandmother - all under active thyriod. My mum and aunt had hair loss, particularly my mum. Both had RA and yes I have it. I had Meningitis when I was 15, then glandular fever and with all combined plus stress - Bingo &*£@!! FFA! I am still stressed out about it and waiting my review apt with the NHS Derm.