Hi All,

I think I may have FFA. I've been doctoring for nearly a decade now with no specific diagnosis, except some autoimmune issues, like thyroiditis. My hair began to fall out in '08, and I have lost about 1.5 cm along my hairline in places, but it just keeps receding and thinning all over. I am also losing my eyelashes, eyebrows, nasal hair, and the rest of my body hair. I haven't heard this term from any dermatologist. I have been prescribed minoxidyl, which seems to have slowed the thinning, but certainly hasn't stopped it or reduced the hairline problem whatsoever. I use lumigan for my eyelashes and brows, which seems to fill in the patches a bit between sheds. I eat well (gf, sugar-free, milk-free), exercise, and lead a happy, healthy lifestyle. Some autoimmune attack is certainly occurring to my thyroid, my eyes (proptosis), and my skin (depigmentation) in addition to the hair. Anyone with similar issues or diagnosis or advice?

Connie

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Replies to This Discussion

Hi, Connie. Welcome to our group. The only definitive way of knowing if you have FFA is through a biopsy. Even the best dermatologists have difficulty diagnosing our disease without a biopsy. I have heard from others that if you have one auto immune disease, it is not uncommon to develop others. Best of luck to you.

Pam

Thank you, Pam. I will inquire about that with my Internal Medicine Specialist.

Hi Connie. I keep seeing people say their issues started around 2008-2010; mine around 2008 also. How did you get the diagnosis of thyroiditis? I'm curious about your symptoms. Did you notice hairloss before or after that diagnosis? If you do have FFA I'm sorry...but it sounds like you have a pretty healthy outlook on life, which I think is really helpful!

Hi Ellen. The thyroiditis was diagnosed by ultrasound and antibodies were confirmed with blood tests. Incidentally, my thyroid function is perfectly normal and has remained so all these years. At first, I believed my hair loss was due to the thyroid complications, but I'm not convinced anymore. During the pregnancy of my second born child, I felt wretched - dizzy, nauseated, exhausted - nothing I had felt before in 5 previous pregnancies, 4 of which resulted in miscarriage. I was on progesterone for the first trimester to sustain the pregnancy, and blamed it for my symptoms, but the symptoms continued beyond the pregnancy. Lots of health issues during that time: kidney stone 9 days following the delivery, recurrent sinus infections, a hiving itchy rash all over that lasted nearly two months. Then remained the dizziness, fatigue, nausea. 2008 was four years later and that was when I noticed that the hair at the baseline of my neck was getting very tangly and thin. Soon, the hairline at the front left forehead began to recede, followed by the rest of the hairline and handfuls of hair everyday (never in clumps, just a lot of shedding). By 2009, my eyes were beginning to protrude (another thyroid symptom), but no antibodies to confirm why. And by 2010, I began getting white patches on skin on my upper body. People can lose eyebrows due to thyroid problems as well, so it all seemed to make sense, but who knows. I'll continue searching for answers, but in reality, it may all just be autoimmune where coping, and not reversal or treatment, is the only choice. Anyway, if you have similar symptoms, perhaps this helped. Thanks for the response.

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