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Newly "diagnosed" and struggling - CONFIRMED DIAGNOSIS
Hi there. I've been struggling with a receding hairline and hair loss for about 3 years now. I've run the gamut of testing and tried all sorts of products, LLT, etc. After the last 3 months of trying products from a European doc that didn't work, he referred me to a PRP and HT doctor in Sarasota. After reviewing my scalp, he told me that PRP wouldn't work and that HT wouldn't either. He asked if anyone had ever told me I might have FFA. Nope. That was new to me until this week. After doing some research (which led me to this site), I believe this is what I have. What started as a receding hairline (haha, isn't that funny I have a hairline like a man) became much more devastating the further back the hairline has gone. I have diffuse thinning on top as well but have hair in the back and sides. As my screen name suggests, my hair is naturally curly for which I am grateful. It helps me hide the scalp better and a pull all my hair forward and fill it in with Toppik. My eyebrows are virtually non existent and I don't grow hair on my legs except for a stray hair now and then. Kinda nice not to have to shave all the time but I'd rather HAVE to shave at this point and have all my hair growing again. Like many of you, I hate windy days, don't like to be seated in a chair and have anyone stand next to me to talk to me, don't like anyone touching my hair and am self conscious on a daily basis.
I had a hysterectomy in 2008 which I'm sure set this off as well as a really stressful time transitioning from one job to another.
I spoke with a doctor friend of ours in Arizona yesterday. He asked if I had done the Barnes basal temperature test, which I haven't. He said that 90% of hair loss is thyroid related and that blood tests may look normal but the temperature test may reveal otherwise. Has anyone gone this route of testing? Is there anything about FFA that is thyroid related?
I'm considering getting a topper at this point. I really want my self confidence back.
Thanks for listening. I'm glad I found you.
Replies to This Discussion
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Permalink Reply by Brenda, IL US on
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Sorry you might be dealing with FFA. It down right sucks to put it very bluntly. Find a good dermatologist to diagnose your hair loss. I've lost at least 3" of hair from ear to ear. I'm ready for a hairpiece. As soon as I can swing it I'm going to the World Hair Institute in Chicago. Good luck to you. I'm glad you found Celias group.
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Permalink Reply by DeniseC on
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Hi and welcome to this group
I would strongly recommend you go back to previous discussion threads (if you haven't already) as there is lots there to learn.
My initial - and only, at that time - tests were thyroid related, but they were fine. I didn't have the test you refer to, though. However, from what I now understand, the difference between thyroid-related hair loss and FFA is in the pattern of hair loss. FFA produces a very distinctive band of loss, top, sides and back. Having written that, I have no hair loss at the back, but a very clear band at the front and sides.
I had an intralace system (Lucinda Ellory clinic - she is based in the UK, as am I, but has clinics in LA and NY, too) almost four months ago and am DELIGHTED with it. It has made a huge difference to how I look and how I feel. I have written loads on this on other threads, so won't repeat it (unless you need me to!). I now cannot imagine not having it, as it has brought 'me' back.
Keep using the site, and try to keep positive. It's a crap condition to have, but there are worse things out there. A cliche, I know, but true. Doesn't help when you are anxiously feeling your hairline in the middle of the night, wondering if even yet more hair has gone, or when you avoid photos like the plague, or feel everyone is staring on a windy day. But, for me, I reached a point where I consciously decided to try, on the surface at least, to accept the condition for what it is - bad luck, and to do what I could about it. What that something is will depend on each of us, but for me, taking control and doing something about it has not just enabled me to feel better about myself, but also accept and talk about the condition.
Good luck and keep writing on this forum - it helps, not just you, but other people too, especially (I think) those who are newly diagnosed, or who, like me, found their diagnosis through this site.
Denise
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Thank you DeniseC for the information about the Lucinda Ellory clinic. I'll save it for future use. My hair loss seems to be fairly slow - about a quarter to half an inch a year so far, so I've tried to estimate how long I can continue to disguise my receding hairline without needing the expense and hassle of such treatments. The results on her website look wonderful, so it's good to know there is an effective solution available.
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I was diagnosed in the UK with FFA about 18 months ago and have found this site informative and supportive - I hope you will too.
I have also wondered about a possible link between my hysterectomy (at 48). I had a hormone replacement implant which was to last a year, but no further HRT after that.
In addition I had treatment for early breast cancer 10 years ago, which included taking Tamoxifen for 5 years - and my symptoms started around that time. I've also had some stressful times - but I guess most people do, with ageing parents / bereavements etc. Research studies currently being carried out will hopefully discover the causes of (and ultimately treatment for) this distressing condition. -
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My own FFA was linked (they say) to oral lichen planus, which is an autoimmune condtion. And I was told, on being diagnosed with lichen planus, that the only treatment of it was management of stress, as it is much more likely to flare up in times of excessive stress. No idea if this is true of the FFA, but interestingly, when I first started to notice eyebrow loss (the starting point in terms of actually seeing I had a problem) I had been through a period of severe, ongoing stress for some time.
Who knows?
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Permalink Reply by CurlyK on
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Thank you for your encouragement and your suggestions. I have an appointment with a dermatologist on July 8 and will report back here once I have those results. It's taken me a while to get the biopsy in order to diagnose this because my insurance won't cover anything alopecia related. That's discouraging in itself since there is obviously something wrong going on beyond a little hair loss.
This has devastated me privately - many tears shed and prayers said - but I don't talk about it outwardly. Between this, my dad's cancer, my mom's car accident that almost paralyzed her 6 months ago, my own back surgery 3 weeks ago (successful I might add) and a high stress job, I'm starting to feel depressed like I haven't in a very long time. I feel myself sinking so it's time I start talking about this hair loss in a safe environment.
Niece, the doctor in Arizona I referenced is Wellspring Clinic in Scottsdale. Traditional/natural and alternative care. I'll be sending him my basal temps and my latest bloodwork to review.
DeniseC thank you for the info on the intralace system. I will check that out if and when it comes to that time. I'm nervous about any kind of hairpiece so I'm glad to hear there are things out there that look natural.
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Oh dear! Poor you - you certainly have a lot going on. And I totally and utterly emphathise with the not wanting to talk about it. I didn't for a very long time. Instead I worried about it, every night and every day. Eventually I decided I had to do something about it, and - following participation on this forum - told my sister and daughter. And cried. They were, of course, very supportive, so I then told my husband and other family. And guess what - they were all fine! And I felt much better.
That is what enabled me to do something about it before it got/gets so bad that I can no longer even attempt to hide the hair-free bits (I hate the word bald - makes me feel like a freak).
So my intralace system is not large - entirely at the front - but it makes an enormouse difference to me.
Stay strong, and, as a very wise woman once told me, be kind to yourself. Because if you don't take time for you, then you will go under.
Good luck - thoughts are with you
Denise
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Permalink Reply by Niece on
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please let us know if you get any help from this clinic in AZ regarding this condition TY!
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I met with a hair/wig place today about a hair piece. I cried like a baby with the wonderful lady who told me her alopecia story and told me there is hope. She made a mold of my skull for my custom human hair piece which will be in in about 8 weeks.
Dermatologist tomorrow for biopsy to hopefully get a solid diagnosis, albeit one that they likely can't fix! :(
Dad's 'last ditch' cancer treatment didn't go well today so it's been emotional in all sorts of ways. I finally got the courage to tell my sister about my hair loss and we had a good cry on the phone together.
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Yeay! Well done you for, first, getting the hairpiece sorted, and, second, for telling your sister about the hair loss. BIG steps.
And the start of taking some control over your situation.
You can't do anything about your dad's illness (so sorry to read of it) but you can start to feel better about your hair.
Keep strong!
Denise
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I got my biopsy results back. Confirmed FFA. The derm still wants so do some more blood work to see if I have Hashimotos Disease or anything else thyroid related. I'll see my primary care in one week and will go from there. Meanwhile, I wait for my topper - another 4-6 weeks to go til that's ready. Eating more anti-inflammatory/Paleo these days and I actually feel better in some ways and have lost a couple of pounds. Learning to live in my new reality...
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