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Comment by Will Be Healed on September 24, 2015 at 11:53pm

I also have wondered if hair dying has been a cause of FFA. I just read an article about the chemical resorcinol, found in hair dyes, is a hormone disruptor. It goes on to say that it can disrupt thyroid and cortisol function. I found out that I had hypothyroidism and adrenal fatigue when I was diagnosed with FFA. The article I found is not a medical article, but interesting based on the most recent posts. I am curious if there is anyone who has not dyed their hair and has FFA. If you are interested in reading the article, the website is annmariegianni.com.

Comment by Let's Solve This on September 24, 2015 at 12:32pm

Mel, Kat, Pam W, and Annie:  Thanks for your responses! 

Mel, I agree - it would be so great if we knew the optimal level of Vitamin A that we should be getting.  Here's a link to a U.S. Government website that has a lot of information about Vitamin A: https://ods.od.nih.gov/factsheets/VitaminA-Consumer.  It sets the "upper limit" for "pre-formed" vitamin A at 10,000 IUs.  "Pre-formed" Vitamin A comes from animal sources - meat, eggs, fish, milk and this is the same stuff that they use to fortify other foods such as cereals.  This "upper limit" is apparently a lot more than we actually need, though, and not the goal we should set for our daily intake.  What they are saying is that if we get any more than that, we are putting our health at risk.  Again, there is no limit for "ProVitamin A" such as betacarotene because that comes from plants or vegetable sources and is only converted to Vitamin A if our body needs it.  It doesn't store up in our bodies like the "pre-formed" Vitamin A.

Kat, you are so right.  It seems that we don't really know if it's Vitamin A or something else that is causing our FFA.  It may be a combination of things, and Vitamin A may or may not be involved.  As Pam W mentioned, it may also be related to our hormones and changes in estrogen levels.  And a lot of people on the forum have mentioned stress, and I have had significant amounts of that in the past year, too.  I feel like we have to just keep pursuing all of the possibilities until we get this figured out!

Annie, I've also spent a ton of money on hair products from the salon over the years.  It's been one of my splurges, too.  I've always been one to take good care of myself -- and now I'm wondering if I've inadvertently created a big problem for myself!  I'm not saying that the hair products I was using for the past year caused the FFA, but I do wonder why they have Vitamin A (retinyl palmitate) in them and if there is any connection!  Anyway, I've stopped using them until I find out for sure.

I was able to finally make contact with the people who are running the FFA study at Duke University.  Yesterday I faxed them the information they requested (the biopsy results and the diagnosis from my dermatologist).  Dr. Olsen will be reviewing it and then they will contact me to schedule an appointment. After that, I will be able to participate in their study.  I'll keep you all posted on that.

Thanks for reading all this...(if you're still there :-))  It helps me to process all this by writing it down, and I hope it will help others, too.

Comment by Annie on September 24, 2015 at 10:46am

Let's Solve This, I also appreciate the list of Vitamin A sources.  I knew it was used in a lot of products we use on our face, but never thought about hair products.  My first thought when I read that FFA mostly affects middle to upper income women was about the expensive salon hair products (my #1 splurge) I've used for more than 25 years.  Of course, lots of women use the same hair products.  There has to be some sort of perfect storm that causes our bodies to react in such a dreadful way.

Comment by PamW San Diego, CA, USA on September 22, 2015 at 11:10pm

Thank you so much for the sources of Vitamin A. Interesting to me is the connection between vitamin a and estrogen. It makes sense to me now that FFA was always thought to have a hormonal connection. Perhaps the depletion of our estrogen levels somehow connects with our Vitamin A metabolism???? Thank you everyone for continuing to bring such great information to this board.

Comment by Kat on September 22, 2015 at 10:42pm

To Let's Solve This... I also have FFA and sent the research article on Vitamin A and Retinol to my Dr and she said that that research was for a different type of Alopecia and therefore not applicable to FFA. Not sure what to think.???

Comment by Mel on September 22, 2015 at 3:27pm

Love your "handle," Let's Solve This! I would love for us to do just that. Great info... Interesting to learn of this difference between plant and animal sources of Vitamin A. You've inspired me also to check my products. ... Just wish I knew that optimal level of A we are possibly shooting for...

Comment by Let's Solve This on September 22, 2015 at 2:01pm

Hello everyone!  I am new to this forum although I have read everything on here since being diagnosed with FFA on September 1st.  I began my "hair saga" in the Spring when I first noticed that something was definitely going on with my hair.  I went to my family doctor and then to 3 dermatologists before finally getting a biopsy and a clear diagnosis.  At first I felt pretty alone and devastated but I have found encouragement from many of the comments I have read here over the past several weeks.

Lacazette, thanks for the information you shared about a potential link to Vitamin A.  I am shocked to see how much Vitamin A I have been putting in and ON my body!  I have discovered that Vitamin A goes by many different names.  The WebMD website lists these other names: 3-Dehydroretinol, 3-Déhydrorétinol, Acétate de Rétinol, Antixerophthalmic Vitamin, Axerophtholum, Dehydroretinol, Déhydrorétinol, Fat-Soluble Vitamin, Oleovitamin A, Palmitate de Rétinol, Retinoids, Rétinoïdes, Retinol, Rétinol, Retinol Acetate, Retinol Palmitate, Retinyl Acetate, Rétinyl Acétate, Retinyl Palmitate, Rétinyl Palmitate, Vitamin A Acetate, Vitamin A Palmitate, Vitamin A1, Vitamin A2, Vitamina A, Vitamine A, Vitamine A1, Vitamine A2, Vitamine Liposoluble, Vitaminum A.

Using this list, I discovered Vitamin A was in my anti-aging night cream (Mary Kay), my shampoo, conditioner, mousse -- even my hairspray (all products from the Surface Awaken product line that I was purchasing from the hair salon).  I have stopped using all of these products.

I was also taking a multi-vitamin with a lot of Vitamin A, and eating a lot of foods with Vitamin A.  My morning oatmeal is fortified with Vitamin A, Most days my lunch is a Nutri-bullet smoothie with baby spinach (lots of Vitamin A!) and fruit.  I drink almond milk (also fortified with Vitamin A).  I have stopped the multi-vitamin and I'm paying attention to everything I am eating.  (We definitely need some Vitamin A!)

I have discovered in my research over the past two weeks that Vitamin A from plant sources (such as sweet potatoes and spinach) is in the form of a carotenoid (such as beta-carotene) and is NOT toxic because the body only converts it to Vitamin A if it needs it. However, Vitamin A from animal sources (eggs, meats, fish, fortified milk, fortified anything, usually) is known as pre-formed vitamin A, and is fat-soluble, meaning that whatever is not used is stored up in bodies.  Too much and we are literally poisoning ourselves!

I live in North Carolina about an hour away from Duke University where there is a study being conducted on FFA.  I am trying to get into the study and will let you know if I am successful in doing that.

Sorry to be so long with my first post, but I just wanted to share with you all what I've learned, and also to say thank you for how you all seem to care for each other on this site.  I don't feel so alone now!

Comment by Meme on September 19, 2015 at 8:15am

 Pam or jules from the uk.

I have tried contacting Rob Davidson Lamb about hairpieces but have had no reply, I know you have both had pieces made, can you tell me how to contact him. My daughter thinks he is now in New York. If this is the case can you recommend anyone else?

Hope you can help.

Comment by Liz on September 14, 2015 at 2:48am

I use 'Eye Power' semi permanent eyebrow make up. It stays on the whole day and comes with 3 templates. I love it. It's really helped my confidence and I've had lovely comments about how good my eyebrows look from people who don't know I have alopecia.

Comment by Mel on September 13, 2015 at 11:06pm

I think I accidentally deleted my comment. (Was trying to edit.)

SandyA -- Thank you so much for the interpretation. I think you may be correct. It sounded like too much was bad, but too little was not good, either. I have (before I saw the study) increased my intake by a LOT, since going AIP. But I think my intake was low before? I never ate so much liver, fish and sweet potatoes in my life. Now, I eat those a lot more often. It sounded like you've had some success in decreasing your exposure/intake to A with your other condition. Very interestig.

Thank you also for posting about the other video. Sounds like a good one I will check it out. ...

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