Replies to This Discussion

Permalink Reply by Lo on February 24, 2016 at 6:51pm

What prompted the gene testing if I may ask? That is so amazing and I believe there is a direct link between our bodies not being able to handle different toxins and the FFA response. I would love to have that gene testing ... All of us... To see if there is a common thread. My guess is there would be. But how do I just walk into my doctor's office and ask for gene testing? I imagine insurance would never cover it.

Permalink Reply by Gai on February 24, 2016 at 7:12pm

Hi Lo, my GP thought I was having signs of under methylation so did gene test. Cost $60 here in Australia. I think toxins are involved too, much more toxic world today. A good website is Dr Ben lynch mthfr.com. This site will give you a list of symptoms. My dermatologist said I was in good company as Queen Victoria had it too. I think they wore makeup back then, with lead or some heavy metal in it ??? Makes you think.

Permalink Reply by Maddy, California, U.S. on February 24, 2016 at 6:52pm

Hi Gai,

That is really interesting about the gene mutation MTHFR. Is this something that can be tested for via a blood test? I may ask my doctor to throw that in when I get my next one. Also, yes....I get very bad hot sweats especially around my hairline. This has been going on for the past 6-7 years for me. I have always thought the hair loss and these sweats were related. I have friends who have hot flashes, but they do not get the major sweating around the hairline like I do. Anyway, I do take one 100 mg. amoxicillin daily and I use clobetasol lotion when I notice any inflammation around my hairline. I have no idea if these things work since it's so hard to say if things would or wouldn't be worse if I wasn't taking it. It's a dilemma, for sure. All the best to you. 

Madison

Permalink Reply by Lo on February 24, 2016 at 7:03pm

Madison, do you mind my asking how much you've lost in the 6-7 years you've been dealing with this? I've had mine for about 5 years and have lost about 2 inches above ears and at temples and about 3/4 inch at the front hairline and that is where the red dots are at the follicle. I don't have much pain or itch... Just red dots along hairline. I can still cover with my bangs. Getting a bit harder though!

Permalink Reply by Maddy, California, U.S. on February 24, 2016 at 7:25pm

Hi Lo,

I have probably lost about 1-1/2" on both temples and probably about 3/4" (same as you) on front hairline. I do not have any loss above my ears. My temples happened first (well, and eyebrow thinning) over the first couple of years and then that completely stopped and have never lost anymore there. My front hairline has been slower and at times it seems thicker and then will get a bit thinner, etc. I don't know if I am still losing it or not...it seems to be holding steady the last 3 years or so. I can also still cover with my bangs for the most part. I have never had any itching or pain either...but I will notice little red dots on my hairline..at the end of the day they are worse and almost completely go away right after I wash my hair or put that clobetasol on them. It really is such a crazy dilemma! 

Permalink Reply by Gai on February 24, 2016 at 7:06pm

Hi Maddy, my sweats are huge around the hairline, but I also get the hot flushes, sweats all over as well. Worse in summer. The mthfr gene was tested by my GP here is Australia as I had symptoms of under methylation. Eg premature greying, abnormal response to insect bites, gut dysfunction etc. , and autoimmune disease. it is a simple blood test here, cost $60. A really good website is mthfr.com written by Ben Lynch.i believe toxins are probably involved with FFA, and this might be a link. I now take methylguard supplements as I can't break down normal folate or folic acid. Very common mutation says my GP.

Permalink Reply by sallylwess on February 24, 2016 at 7:32pm

I also have an abnormal response to insect bites, gut dysfunction, and several autoimmune conditions.

Permalink Reply by Maddy, California, U.S. on February 24, 2016 at 7:33pm

Hmmm...that is so interesting. I go to a great endocrinologist who would probably order that test for me no problem. I go to see her in a couple of months, and I will definitely take some of the info. from that site and ask her to do the test. Oh, and btw, I also get hot flashed all over, but I am the only one in my group of friends who gets it so bad around the hairline!

Permalink Reply by sallylwess on February 24, 2016 at 7:30pm

First of all, I am sorry to hear of your diagnosis.  Coming to terms with this condition is  not an easy task.  I handle it better some days than others.   I have had this condition for ten years.  I was diagnosed three years ago.  I have lost at least two inches from the entire frontal and side portions of my hairline.  I am now losing a very large area of hair at the crown of my head.  This has meant I can no long disguise my loss except by wearing hair pieces.  I do not wear wigs.  I wear toppers or a specially made frontal piece.  If you are interested, you can read my story here:http://sallysbloggingspot.blogspot.com/2016/01/hair-journey-of-loss...

Thank you for telling us about this gene mutation.  Just when one thinks one can't learning anything new about this condition, we learn about this.  I seriously believe that is my problem.  I suffered from severe toxic poisoning twenty years ago.  (I also recently wrote about that on my blog.)  I will ask my doctors about this testing.  

I also have extreme hot sweats.  I had them so terribly bad when I started menopause.  They have become less severe over the years, but at night I really suffer.  My head will become very hot and sweaty.  Funny, my mother tells me that I was this way as a child.  She has been saying this for the last few years, and keeps wondering if that has anything to do with my hair loss.  I have always given her some sort of reply like, "I don't see how that could be, mother."  Well maybe she is right.  She is pretty sharp for her age.  She will be 100 in just a few months.  She is always trying to figure out why I have these strange illnesses such as gut problems, arrhythmia, hair loss, and autoimmune disease.  

Permalink Reply by PamW San Diego, CA, USA on February 24, 2016 at 7:45pm

Hi, everyone. One of the first things I read about FFA is that doctors ( Vera Price) thought it may be a reaction to dioxin which is a chemical used in agriculture and found in animals. I also sweat around my hair line!! I always thought that it was the result of the destruction of the sebaceous glands (which holds our hair follicles). I wish we could find out more about genes. Also, Doctor is always concerned about my liver, which often has high enzymes, and I have high cholesterol all my life. The liver filters toxins.

Permalink Reply by Lo on February 25, 2016 at 3:25pm

Great article:

http://www.drfranklipman.com/a-story-of-healing-detoxification-and-...