Comment

Comment by Jean on June 5, 2015 at 5:09pm

I've also recently been diagnosed with under active thyroid and estimate that I've probably had FFA for about 6 years.  I have no eyebrows (but beautifully tattooed on) and no bodily hair apart from eyelashes, which come and go.  Like many FFA sufferers, I have other autoimmune issues, including psoriasis and arthritis. There seems to be so much commonality between us that it may be interesting to produce a 'profile' to assist with research - although I'm sure that's been done before!

Comment by Anne Louise on June 5, 2015 at 4:47pm

Linda that is interesting. I've always wondered if the thyroid was somehow connected, since eyebrow loss, especially of the outer third of the eyebrow, is a feature of hypothyroidism. I had thyroid cancer in '09 and diagnosed with FFA last year. My eyebrows were falling out for over a year, but I assumed it was due to my thyroid levels. The whole eyebrow feature is bizarre to me, especially where they seem to respond to treatment more successfully than the scalp. My once thick dark eyebrows, sadly are completely gone...for me the hardest part of this disease so far.

Comment by ammie on June 5, 2015 at 3:49pm

I just wanted to update you all on my biopsy results. The biopsy showed lichen planopilaris with moderate inflammation. My dermatologist is referring me to a scarring hair loss specialist and gave me a prescription for Topicort and Plaquenil. Sigh. 

Comment by Mike'sDeb on June 5, 2015 at 9:49am

I also have thyroid issues. Had a nodule drained at 17 yrs old and was diagnosed hypothyroid at that time...been on thyroid replacement >30yrs.

Comment by KarenGinny - Iowa, US on June 5, 2015 at 9:39am

Linda, that is interesting. I've always wondered if there was a link between the two since I've had thyroid problems (had a nodule on one removed and been on meds for over 10 years) and been affected by FFA or LLP for the last 4 years. 

Comment by Linda from Cincy on June 5, 2015 at 8:19am

An interesting aside (or not?) I read recently that, when tested, 34% of patients with lichen planopilaris were also diagnosed with thyroid disease--as compared to 11% of the general public.    So this is definitely an endocrine issue not just some "mysterious" rash that appears with no rhyme or reason.

http://www.ncbi.nlm.nih.gov/pubmed/24569115/

Comment by Linda from Cincy on June 5, 2015 at 7:35am

Thanks, MJ, Cleveland's about four hours away which is not an awful drive, esp. if I'd only have to go a couple times a year.  I'd definitely like to participate in the research study so will contact Dr. Bergfeld/ the Clinic.  It would be nice to feel that progress being made in figuring this condition out somewhere, somehow!   

I also have an appt. next week locally with bioidentical hormone doc for some testing.  Not sure if I'll go that route but curious to see what tests show about any hormonal abnormalities or imbalances.   I'll share anything that seems pertinent or helpful.

Comment by MJ on June 5, 2015 at 5:54am

Linda, I am sorry but I don't know what the name of it was. I didn't ask further since it was not going to be an option for me. How far is Cincinatti from Cleveland? You may want to consider the Cleveland Clinic. My drive is over 3 hours but I only have to go every six months.

Comment by Linda from Cincy on June 5, 2015 at 1:05am

MJ, do you have any information about the progesterone treatment your doctor discussed with you?    Since there's obviously hormonal involvement in the development of FFA it sounds like maybe they're finally getting on the right track in trying to figure out why this is happening primarily to peri- and post-menopausal women.  And why is this a fairly recent phenomenon?

Thanks, Linda

Comment by Rachel218 on June 4, 2015 at 9:37pm

Could anyone send me the fact sheet ?

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