Alopecia World
It's Hair Loss Support At Its Best™
New to this!
Hi all, I found this site today and joined immediately.
Looking for any advice you have. I noticed four months ago that I was shedding more hair than normal. About 3 weeks later went for a trim and my hair dresser asked me about the patch on my head. Needless to say, that started this journey. I immediately went to the doctor and dermatologist and diagnosed with Alopecia Areata. It started with two patches on the top/back of my scalp, they grew and joined together so the whole crown area was a loss. I've been doing the injections and Rogaine and have some new growth in those original patches, but now there are two new patches on the back of my head. My hair has really thinned overall, but so far it only appears to be my scalp 4 months into this.
I've been working with a nutritionist and have gone gluten-free, taking vitamins including Biotin, and Iron and Vit D which blood work showed I was low on. I've been wearing hats all the time for about two months now.
Does anyone have any advice on dietary or vitamin regimens that help this? I do have seasonal allergies and asthma but have treated those my whole life, shots as a kid, but just OTC meds today. I do take Singulair for the Asthma.
I'm healthy, happy and reasonable fulfilled in life and find this to be disappointing and inconvenient...I'm realistic, but would love some first hand knowledge.
I guess I'm prepared for a year or so of shedding, is that correct?
Any advice is appreciated!!
Replies to This Discussion
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Permalink Reply by Karen Smith on -
Hi, Alopecia is so unpredictable. What works for some does not work for others. It sometimes goes away spontaneoulsy. Some people have success with diet. The vitamin D deficiency is controversial. Read about the condition on NAAF site. You might want to start with Rogaine. That is usually where the dermatologist begin. You may want to get a clip on topper. It is a hairpiece that blends with your hair so that you don't have to be as self conscious. Let me know if I can help.
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Permalink Reply by Molly on -
Hi Karen,
thanks for the note. there's so much conflicting info out there. I've been using Rogaine for over two months now, and there is peach-fuzz in the two original spots. I go back to the dermatologist for my fourth round of steroid injections on Thursday. I noticed last night that there are MORE patches on the back of my head. Didn't sleep much last night. I keep telling myself there are so many worse things that could be happening, but still, everything always seems worse in the middle of the night! I really appreciate the support! I hope to be able to help someone else out someday.
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Permalink Reply by Karen Smith on
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Sorry, losing hair is actually the worst part of this. You deal with what you are left with but not knowing how much will fall out is tough. Get a clip in hair piece if you can sooner rather than later so you are prepared. It may stay gone a while or it may grow right back.
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Permalink Reply by Kathryn on -
Hi, Molly...
I am so sorry that you are going through this. I think one of the most difficult things about Alopecia is the lack of information that is available. As Karen mentions, it is unpredictable and different for everyone.
For me, my Alopecia presented itself last March/April of 2011. I am 49 years old, and had never even heard of it before then. I too noticed unusual amount of hair shedding, so brought it up casually during a physician appt. I was shocked when she said I actually had bald patches! I have since been treated by a dermatologist, endocrinologist, and naturopath.
I think you and I may have some similar circumstances. I presume you are in your 40's since you have been married 25 years and have older kids (although your picture looks MAYBE 30!). Also, my blood work showed very low vitamin D and iron. I started to notice some pre-menopausal symptoms during the last year. Although Alopecia strikes a wide variety of people, both men and women of different ages, I have come across many women dealing with it for the first time around our age. I can't help but think there is some kind of hormonal connection.
Yet there are still differences. Some women quickly progress to totalis or ever universalis state, and one woman told me that once menopause was complete for her, her hair grew in despite having lost over 1/2 of it. That was over 5 years ago and her AA has been in remission since.
No matter what happens for you, I do believe things WILL get better. My feeling is that our Alopecia becomes triggered for different reasons, and we need to be our own detectives to figure our how to turn that trigger off. In the mean time, try to educate yourself as much as possible, take care of your health, and look for continued support through this website as well as the one through NAAF website. Hang in there, Molly!
Kathryn
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Permalink Reply by Molly on
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Hi Kathryn,
Thanks for the kind words...I turn 47 next week and my vanity is taking a hit here!
I definitely make the perimenopause connection. Can you expand on your treatment with the naturopath? I'm working with a holistic nurse practitioner and and meeting with her next week to get on a good quality fish oil with astaxanthin (very powerful anti-oxidant). In her world, all hair loss is associated with essential fatty acid deficiency. All shared information is welcomed. I totally agree with you on our individual paths, but I'm also so relieved that there are beautiful ladies (and gents) like you, to share this journey. Have a great day!
m
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Permalink Reply by Kathryn on
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Molly, I hear you on the vanity thing... I turn the big 5-0 this week, and it's not easy! Like it's not enough to have to deal with hot flashes, interrupted sleep, sagging skin, etc, I also have to deal with loss of hair, lashes, ugh.
But I digress... My naturopath and I discussed a few things...
The first issue was inflammation. I am trying to follow an anti-inflammation diet (look it up online), taking fish oil 2X/day, drinking lots of water.
Another thing we discussed was toxic cleanse. My alopecia appeared shorty after changing to a new work uniform that caused a variety of skin issues for many co workers. I'm taking a high fiber mix 3-4 times a day, then taking a nutrient fortified protein powder 2X/day. I am trying to go to a sauna as often as possible, although schedule only allows a couple times a week.
Since my endocrinologist recently noticed suggestion of early Hashimoto type thyroiditis, (another autoimmune issue) my NP has me on both thyroid and adrenal support supplements. I'm also taking iron, vitamin D, biotin, B12, and probiotics.
It's been about 3 months since my first visit with him, and I confess at times I wonder if it's worth everything that I'm doing. However, it does feel good to be doing something for a condition for which we have little control. Ultimately I do feel I am much healthier for the steps I'm taking.
I was trying not to get too wordy, but...
Keep us posted on your progress!
Kathryn
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Permalink Reply by Molly on
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Have a very Happy Birthday! I hope you have a year full of family, friends and love! You look fabulous and NOWHERE near 50!
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Permalink Reply by Whitney -
Molly - may I just say that just by looking at your profile picture (a.) you do NOT look anywhere even close to 47 and (b.) despite how your Alopecia progresses you have very beautiful features that will shine through.
Hope you are well!
W
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Permalink Reply by Aimee on -
We were diagnosed the same way - by a hairdresser! I developed areata when I was 39 in September 2008. By June 2009, it had progressed to the point I had to wear wigs. By the time I turned 40 in August 2009, it turned to alopecia universalis. I do wonder about the hormone connection - never thought of that! I think mine may have been caused by extreme stress (which has since been resolved, so, hello! I'm ready for my hair to grow back now!)
I always tell "newbies" this: When I first joined this site, I became friends with 4 people with AA. Of the 4 of us, I'm the only one who went AU. The other 3 had their hair grow back, one still applies steroid cream (olux?) daily. So, you never know.
This site is a wealth of information and support. Welcome!
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Permalink Reply by Molly on
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Aimee~
thank you so much for the reply...i feel better knowing that I have e-friends I can share this with. My husband is great, consoling and accepting. My kids are supportive, if not grossed out by the hair on the floor. My co-workers have all been great, but my mother is upset by it (on my behalf) so I try not to talk about with her. I've let my sister know, in case this happens to her, but only a couple of my girlfriends I've told. They're all supportive, but don't really get it. I haven't showed anyone but my husband my whole head.
I hope to be a help to other newbies as you've been to me! Have a great day, I think you're beautiful!
;-)
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