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Vitiligo and alopecia
Hi there- do any of you have vitiligo, which is also an autoimmune issue? I've had it since I was 8 years old (am now 50 with no pigment left). I know thinning hair is a common "side effect" of having vitiligo. I'd be interested in hearing other's stories and what they've done to treat or just cope with everything.
Replies to This Discussion
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Permalink Reply by GardenJess on
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Out of curiosity I just did a search for "vitiligo" and your post showed up. I'm surprised that there weren't any replies. Is it really that rare to have alopecia and vitiligo?
Technically I think I have had alopecia since I was a child, but when I had a noticeable bald spot I was too young to care, and then through my 20's and 30's any bald spots were small and fleeting and not worth bothering about. In my late 20's I was diagnosed with Hashimoto's hypothyroidism. Then, in my early 30's I noticed a small white spot on the back of my right hand. I remember thinking it was not normal and showing it to my mother who thought I was overreacting to even take notice of it. Soon my face started losing pigment, and I did go to a dermatologist and try a few creams but there didn't seem to be any improvement, and I soon gave up treatment. I am lucky enough to be fair skinned, so if I stay out of the sun my vitiligo isn't obvious. I can't even really say how extensive it is, but both hands and most of my arms lack pigment as well as much of my face and parts of my trunk, legs and feet. With my last pregnancy 3 years ago my hands ended up covered with dark spots, which were, of course, my normal pigment coming back. I think that was a result of my pregnancy suppressing my immune system, though due to a bad case of poison oak I did end up with a steroid injection during the pregnancy. Those spots are long gone now.
About a year ago I realized that I was missing a lot of my hair and now I have lost most of it and opted to shave what was left. In my case it was clearly not just thinning hair but smooth bald patches that eventually covered most of my head. I suppose my experience with vitiligo helped me decide not to treat the alopecia. With no guaranteed cure and possible side effects, it didn't seem worth it. I did, however, finally go to a rheumatologist and got the both reassuring and unsatisfying news that, according to his measures I am perfectly healthy. He did seem to think that I wasn't at increased risk of debilitating autoimmune conditions even with the three I have.
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Permalink Reply by RosemontMar on
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Thank you for replying! I am otherwise healthy, but have been taking tons of supplements for several months now and have not had any positive response. Most of my hair on top is extremely thin, if not spots where there is no hair. If anything, I seem to be in a phase where I'm losing hair now on the bottom back part of my head, near my neck. As others have said on this site, alopecia has a mind of it's own. I believe them now. No matter what I do (supplements, gluten free eating, etc.), nothing is making the hair grow back. I've posted here too that I've been wearing a synthetic wig for every day and it's become frizzy after only 2-3 months. It's not a cheap wig, but I've come to the conclusion that I will be spending my money on a good human hair wig soon. When I was in my 20's, I had some treatment for the vitiligo (taking psoralens pills, then going into a UV booth for several minutes). At that point, I was getting some pigment back (I still had about 50% of pigment on my body back then), but did not keep up with the treatments because I was going through a divorce and it was my husband's insurance that was paying for these treatments. I am really surprised nobody has replied back since thinning hair is a side effect of the vitiligo. Maybe the National Vitiligo Foundation has more information... I am Italian, so I was kind of dark skinned and it was obvious, the spots I had from the age of 8 on. It was very embarrassing as boys would tease me and I started wearing makeup at an early age to try and disguise it.
Another thing I've wondered if there is a connection is that when I was a baby, I had tetracycline for some illness I had. Because of it, my permanent teeth are stained a gray color and no amount of teeth whitening can make them white. I wonder if that tetracycline also had some kind of effect on my body and activated the vitiligo/alopecia. I've done internet searches and come up with nothing. On the contrary, I've seen some postings where tetracycline has been used to try and help with vitiligo and/or alopecia.
In any case, I'm just dealing with it; what else can I do? It's actually easier now to be all one color, and I just make sure I put sunscreen on whenever I go outside. My hair (what I have) was dark brown, but has a ton of gray in it, from the vitiligo that is on my head.
I wish you luck and thank you for replying!
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Sorry you had to go through vitiligo as a child. That must have been hard. I think I'm on a trajectory toward no pigment, but I really don't give it much thought except to wear sun hats and long sleeved shirts and sometimes gloves. I should wear sunscreen more than I do. I find myself telling people I hang out with that I have vitiligo so they don't think I'm weird for being so covered up in the California sun. It sure would be nice to know what sets off autoimmune conditions. My serious hair loss happened after I had my third baby and had a very stressful (and sleep deprived) couple of years, so I think that was probably a trigger. I don't associate my hair loss with vitiligo apart from what seems to be a susceptibility to autoimmune conditions. The hair I do have is mostly white, and I haven't figured out if that is due to vitiligo or some combination of alopecia sparing the grays and growing back in white. One round dime sized patch of white on the back of my head does seem like a vitiligo effect, but I haven't noticed pigment changes on my scalp. Maybe now that I go around bald some of the time I will either get some tanning or see that there is none.
Coincidentally, my mother was given one of the tetracycline like drugs while pregnant, and it caused some of the enamel on my adult teeth to not form. I've never tried to find an autoimmune connection and may well have had drugs from that family as a child. About a year ago when I finally went to a dermatologist to confirm that, yes, your hair is gone, he gave me a prescription for minocycline to treat rosacea acne. I was breastfeeding at the time so ignored it, but I have been so fed up with having bad skin to go with my bad hair that I recently got the prescription filled, only to look into side effects and see that it had been associated with triggering devastating autoimmune reactions.
Good luck with the wigs. I have only tried synthetic wigs so far, and they have definitely not convinced me to become a full time wig wearer. My go to wig is now a chin length bob, though my bio hair hadn't been that short since middle school. It's just easier to have a short wig, if not completely satisfying. As I approach a year of extensive hair loss, I am starting to accept that it probably won't grow back, but of course, none of us know the trajectory of the condition. I think having some hair left is a positive sign, so maybe yours will start to regrow.
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You maybe interested in this tremendous success of a lady with vitiligo who has been following AIP paleo for 4 months https://www.facebook.com/photo.php?fbid=2083264483585&set=gm.67...
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Thanks, it won't let me access this page, but I'll try to search by using "vitiligo". Would you be able to give me any information about this woman's name or what she goes by on Facebook? Thanks!
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the woman has been following AIP plus GAPS and has tremendous success with repigmentation (her photo attached). She has had vitiligo for 13 years. She writes "I try to eat soup for breakfast, leftovers for lunch, and AIP for dinner. I tried strict gaps and found I got burned out after about 2 weeks. My mental health just wasn't ready for it. I'm also breastfeeding, so that played a part I'm sure. I don't do bacon or sweet potatoes. Well, maybe sweet potatoes once every two weeks. I usually make at least one dish a week that's heavy on the fermented food. Uhh... Detox through bentonite clay and baths. I upped my probiotic to therapeutic grade. Digestive enzymes with every meal. Gelatin candy. I haven't tried liver get, but I do bone marrow... Hmmm... I think that's about it. Oh, can you all do honey? I do honey. And like I said, fruit is too good right now to pass on. So I usually have 4 servings."
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Permalink Reply by Linda Australia on
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Hello, I also have vitiligo and alopecia, which was diagnosed last year. I can't find anything to reverse either and just have accepted and got on with my life. Have to be very careful in the sun and now wear wigs.
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About 25 years ago, I tried the psoralens pills with the UV light booth once or twice a week and was getting some repigmentation, but then was going through a divorce and didn't keep up with the treatments. Now I don't have any color left in my skin, but I'm ok with that now. It's better than having spots all over my body. I always wear sunscreen and wear wigs and hairpieces. I had wondered if this all has something to do with the fact that I got sick when I was a baby and was given tetracycline. I think gluten has something to do with it as well.
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I had vitiligo on my legs. In the initial stages I started ignoring it but when did some research I found out that this condition can be cured. The I started finding treatments for vitiligo and finding more options to cure it. In the research phase I found out that homeopathy is the best treatment for vitiligo. So I started homeopathy treatment and seriously the white patches just vanished in 3 months. I didn't expected that at all. Homeopathy worked really well for me. I hope it will work for others as well. Read more about vitiligo treatment in homeopathy here: http://bit.ly/2afI9A5
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