Hi 2Dachshunds,

Yes Zinc is different to titanium dioxide & the only sunscreen I’ve been recommended to use. Not only is zinc a better sunscreen as it absorbs more UVA & UVB than titanium but titanium is a toxic heavy metal which creates free radicals that do oxidative damage to your body and skin cells, whereas zinc is a critical mineral nutrient that your body needs. 

@Minter I’ve embraced the baby bangs too with my pixie. I hate how my ears stick out (my bob covered them nicely!) but this haircut looks intentional and I get compliments on it ... which makes me be extra exuberant in my “thank you!” ...if only they knew the agony that’s lurking on my scalp!

Hi

Ive been doing a lot of reading regarding the use of titanium dioxide in sunscreens. To my horror I’ve just learned it is used extensively in supplements and I’ve been taking those since I was a very young man. Read what the American College of Healthcare Sciences has to say about Titanium Dioxide. Of particular note, it states “ It (TD) has also been implicated in immune system function, with some studies showing DNA damage by TD nanoparticles” We really need to read the small print, it’s not just about what we put on our bodies, I.e. sunscreen, but what we are putting in also. I’m now looking for TD free supplements and sunscreen.

william

Wow, I never would have thought of titanium dioxide in supplements. I will look at my vitamins and iron supplements right away. 

Thank you so much!

OMG, titanium dioxide is in Centrum Silver multi-vitamin and SlowFe Slow Release Iron Supplement. Thank you so much for letting us know this,

illustr8r, I bet you look awesome with your pixie and yes exactly what I was trying to say- intentional!!! My hair looks definitely looks like it supposed to be this way instead of the way it was before when I was constantly fussing with it, I am really happy with this look and I feel miles more confident.  

I am now off to the medicine cabinet to look over all my vitamins and supplements and lotions and potions for titanium dioxide :-/

So confused with what to use and not to use!  My dermatologist asked me last month what type of lip sunscreen I use and I showed him and he told me it was not effective and told me specifically to look for something with titanium dioxide in it like Coola.  Which I went out and bought and have been using!  Ugh!

I’m checking ingredients, my toothpastes have titanium dioxide. Colgate sensitive & sensodyne. I know I rinse it out but maybe this is the source!

Thanks 2Dashunds, I use Sensodyne and see it has titanium dioxide. Crest Pro Health toothpaste also has titanium dioxide. Not sure what to do about toothpaste. 

Titanium dioxide is in my eye brow pencil, cream blush, lip balm and lipstick and tinted moisturizer. And I thought I had changed to chemically safe brands.

Naproxen generic brand has titanium dioxide, got it at Costco. 

there is salt toothpaste by Weleda which doesn’t have titanium dioxide. I see it on amazon but not sure I can get at local

health store...

Just found a fun fact re TD ... I knew they use it in food to whiten / brighten it but it’s use is inder review as the International Agency for Research on Cancer (IARC) classifies titanium dioxide as a Group 2B carcinogen, which means it's "possibly carcinogenic to humans”.

looks like we have some work to do telling companies to quit using TD!

i found Weleda salt toothpaste and Dr. Bronners toothpaste at Whole Foods. The salt one works well and it’s salty but I like it! Both were less expensive at store than online.

i read labels at store & looks like Advil liquigels do not have TD so I’ll see if they have a migraine version.

wondering if the prescription migraine meds have TD!

Check detergents too.  

Wait for it.... M&M’s were among the highest candy containing TD.... I guess it’s all the food coloring!  I just found out that the Estée Lauder Moisturizer and Georgia Armani makeup that I use also contains TD!  All I can say is “wow”..... wouldn’t it be mind blowing if that was actually a contributor to this horrible disease?  Yikes!  I wonder if it’s topical or systemic absorption of these make up products  that could be the culprit?  Anybody read any research on that?  I mean, our skin is the largest organ of our bodies and it absorbs this stuff that eventually gets into the bloodstream, I would assume.  

Wow, lots of activity on this subject over the past few days!

Lovely to see everyone is still around & read your comments.  Of course it would be even better if this condition disappeared completely and we could just chat about life in general...one day maybe?!? 

Thinking of you all xx 

my hair loss at sides marches on at a seemingly fast pace... acupuncture and head tapping (?) I’ll try anything (!!) helping my sanity and some re-growth on top? Or is it my imagination? 

Ps CACI facials helping skin!  I’d highly recommend x

Titanium dioxide is in Oil of Olay bar soap and Shea Moisture bar soap.

I've eaten a LOT of m&ms in my day, geez. 

I looked up ingredients in ondansetron and naratriptan which I use for migraines, they both haveTitanium dioxide.

@Afraid, what are CACI facials?

I've checked all my body soaps and lotions, now on to food ingredients!

I want to find a new bar soap for my face and body that does not have titanium dioxide. I have very dry skin even in the summer.  Does anyone have a bar soap that they like that is not drying?

thanks everyone. great posts!

Hello Lovely Ladies,

I have been ordering my facial cleanser, day cream, night cream, body lotions, etc. from a website called Be Green.  Once I became aware of the EWG app I started looking up safe products and everything from Be Green is rated #1 on the EWG. I am pleased with all of the products that I use.   

Hola all, well the sunscreen theory would certainly fit with why I have lost hair on my arms and legs as well!  But quite a problem as I also have had skin cancers removed from my face and body so need sun protection in Australia

I have noticed that at the end of each summer for the past 3 years I’ve had ffa I have a significant amount more hair loss in August & September.  I now believe it it because of the use of sunscreens. So this summer I am not applying sunscreens with the bad ingredients oxybenzone or octinoxate. But now after I substituted zinc oxide & titanium  oxide I’m reading these are bad too.    Ughhhhh

I am so confused!!! Titanium dioxide is cancerous but yet it’s in my HRT and my sunscreen .., I red France have tried to ban as a food additive.  

On a different note I have checked my body temperature and it is around 35 degrees!!?  Does any else have low body temp?  Could this be link to hair loss?

apologies I don’t know how to copy link into this thread re CACI facials but if you google it will provide info 

I did the same thing. I eliminated oxybenzone and avabenzone in sunscreen and replaced it with titanium dioxide and zinc oxide sunscreen. I rarely wear sunscreen now. I did not wear foundation for a year and had nice hair regrowth. My hair finally looked fuller instead of flat. Then I started wearing tinted moisturizer without harmful ingredients daily. One day while washing my hair I had 20 hairs fall out and my hair once again looks thin and flat with bald spots. Now I look at the ingredients in the tinted moisturizer and it contains titanium dioxide.

Hi Ladies

For more info on TD go to YouTube, literally loads of videos on the subject, much of which is all rather alarming, and not a little depressing. Still knowledge is power and anything that can go some way to relieving this hideous disease must, surely be welcomed.

William

Donna, zinc is fine to use. It’s a mineral your body actually needs. TD is not ok. It’s a rare earth metal that can be toxic & carcinogenic. If you can’t avoid TD sunscreen my derm told me to not apply it higher up my forehead than my eyebrows... keep it away from your hairline. 

I used foundation for years that had spf 15 or higher in it. Protects the skin? I think because of FFA my skin is blotchy with brown spots, red spots and broken capillaries. That sunscreen didn’t protect me from anything! I had melasma on my cheeks and chin too a few short years back before the hair loss-and I think this was a signal that my hormones were out of whack-an equally big trigger for FFA as the products we use. It’s all a big mess and depressing when you expect to roll through menopause with some hot flashes and higher cholesterol like 9 out of 10 women I know. So, yay.

menopause can cause higher cholesterol as well?  ughhhhhh.  Though I will say now that I finally am on low dose HRT that my hot flashes are more or less under control and I am kicking myself for not going on it years ago because of the fear of breast cancer/heart disease (which apparently unless you have a history or higher risk is not caused by HRT, big thanks to the medical community for instilling that unfounded fear in me and many other women).  Because of that  I was a miserable, sweaty sad mess until I decided no more, I can't take living like this anymore and decided to use HRT. 

Which sunscreen ingredients are safe?  It looks like we have to choose between FFA's hair loss if we use must sunscreens or makeups with SPF or getting skin cancer if we don't protect our skin.(I know we can wear wide brimmed hats for protection.)

I’ve just found out through investigation that tramadol has titanium dioxide .  I’ve been taking that for several years.  Probably as long as I’ve had FFA.  I guess that needs to stop also. Sounds like there’s a correlation there.

@Minter Almost all the ladies I know 50 years old(er) are working out a lot and pondering whether to go on Lipotor!

OK, has anyone developed red rashes anywhere around your eyes? I thought I was getting a stye-it’s not. I have a 2 inch long red rashly stripe above my eyelid, another small spot on upper and lower lid. Itches, stings and it’s flakey. It happened almost overnight. No idea why. It’s not a scratch.

I read this, “f this condition persists, the eyelids can become thickened in a process called lichenification.”

Another lichen-something?!? Ugh.

illustr8r, same here!  Working out & on cholesterol meds, but even though through diet and exercise I got my numbers down this past year, my Doc still has me on the meds which is frustrating as I'd rather not take meds that I don't need.  I also had/have? fatty liver disease yay. though I was able to get those numbers down significantly as well- getting old is not easy!!!!!

* I always thought I had a pretty good diet/exercise thing going on but seems (now that I know menopause can be the culprit) I was wrong :-(  

I don't have any rashes like you described, but I hope yours is not a 'lichen-something' and maybe it is just a weird summer rash!!!

Illustr8r, it is most likely related. I’ve gone through times of itching around the eyebrow area as well as eyelids. I met an ophthalmologist who told me to wash my lids with baby shampoo which has helped tremendously. In fact, I wash my whole face with baby shampoo. Hope this helps. 

Hello, 

For those of you who are concerned about high cholesterol, adopting a plant-based diet can remedy it! It’s the saturated fat in the animal products that we consume that, for most people, is the guilty party!  Great person to explain this is Dr Neal Barnard. Check him out on YouTube! 

I have a bazillion things in the mix, including accutane (amnesteem) since 11/2017 (zero side effects), stopped all spf products as well as other commercial face/body care products 7/2017, transitioned to AIP diet 3/2017 and now on Dr Goldner's green smoothie/high water intake/vegan protocol since 1/2019....and I have had no hair loss since appx 9/2018. I also shut off my autoimmune blood marker (elevated ANA since 1989) as of late 3/2019 :)  I know it’s a lot of info (and there’s more but I will stop where I did lol!)  but I thought y’all might be interested with the cessation of hair loss. 

Jamie

@Thanks CurlyK 

I will give the baby shampoo a try. I have a tube of Triamcinolone Acetonide that my dr gave me for random itches and blotches. It works to reduce redness but if I wash my face/shower it flares up and starts to itch and sting.

@Pauliegirl I’ve adopted a vegetarian during the week and meat (if I want it) on the weekends diet. It’s helped with staying slim and hopefully will reduce my cholesterol. I have another 3 months til I get labs again. I do feel better!

Love all the information, thank you.

random question do any of you have a low body temperature- mine ranges from 33 to 36.1 is that normal?  Could it affect hair growth?   

Hi afraid, no low temp, but a low temp would definitely affect hair growth, ..what are you taking your temp with? And where? If not a rude question

Hi Plf,  haha... I take temp orally with digital thermometer.  

I have always had a low temperature.... 96.9 to 97.6 is pretty normal for me.  (36.0 - 36.4 celsius).  Never correlated low temperature and hair loss or slow hair growth.  Interesting thought.  

My derm has prescribed minocycline for the red bumps at my hairline. They seem to have increased since last appt. Has anyone else used this? I have been taking finisteride for about 5 mos. with minimal improvement. It upsets my stomach, the antibiotic is supposed to do the same, plus vertigo. Getting a lot of meds here.

No, I don't take any meds at all for this, I'm really sorry to hear you are having those awful side effects from the finisteride, they sound horrible. 

I have recently tried dabbing a bit of CBD salve or oil mosquito/horse fly bites & rashes (I seem to get bombarded by flying biting bugs and more while mowing the lawn and that is after I cover myself from head to toe in a long sleeve shirt/pants/tucked in socks/hat and gloves)!!!

It seems to me that they seem to stop itching and heal faster.  CBD (hemp not from marijuana) seems to be my new go to for everything lately.  So maybe that might help for the red bumps you have? 

Well, MooGoo is not for me. It makes my skin break out! The kind of blemishes that are deep and painful and forever red. My chin area is the worst and my cheeks. So, back to Ponds I guess. Ponds is probably not great on the Healthy product charts but for now I have to do the tried and true...dang it!

Oh man illustr8r I'm sorry!! That is not good at all, I wonder which one of the (or combination there of) ingredients that made your skin react so horribly to it?  That is too bad as they do seem to really make an effort to make good products so that stuff like this doesn't happen :-( 

I use Ponds cold cream as well as Moo Goo, I love the way it makes my skin feel and yes, it is tried and true!

@Minter Yeah, I’m not sure what it could be. I’ll continue using the UdderMilk on my arms and hands till it’s gone but I’ve stopped using the AntiAging cream on my face. Someone on the FFA FB page asked if anyone spends too much money on hair/skin miracle products looking for that one thing that will save them. Been there-done that! I think this last purchase has taught me to just stick with what has been working successfully for about a year now. I seem to be stable...don’t upset the Apple cart!

Hi everyone! The CARF Patient-Doctor Conference will be in Nashville, Tennessee, USA, April 24-26, 2020. I'll be there again and hope many of you can join me. It's SO worth the money to hear and speak directly with doctors and researchers, get your questions answered, and meet and make new friends with people walking this same journey. Mark your calendars and start planning. :)

@CurlyK. Thanks for the heads up on the conference & I hope you post again on what you find out! It was really helpful.  Your picture is beautiful, love your hairstyle!!!

illustr8r, yes been there done that as well!  If it's not broke don't fix it, don't upset the apple cart, etc... unfortunately I always seem to forget those wise old sayings when I'm entering my credit card info  for something different or new and improved! 

CurlyK, thanks for the info on CARF- & I agree with 2Dachshunds, you look awesome in your new profile pic!

Here’s something I’ve found to be a big help with these odd red rashes around my eyes that might be Blepharitis. I haven’t been to the dr yet as after doing lots of online research (!) the symptoms seems to match.

I bought a box of OCuSOFT Lid Scrub Plus. It’s cleared up my red eyes fast and I don’t have the itchy scratchy feel of dry eye either. So, another product to add to the pile to feel normal! Bonus, my bottom eyelashes seem to be making a comeback. I haven’t used Latisse or RapidLash in quite a while.