Alopecia World
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My story
Hello All,
This is my first post. After doing countless hours of research and reading all of your stories, I've decided to share mine.
Backround: First let me mention I am a 25 year old male. Nobody in my family suffers from alopecia areata. Since puberty I have not had much body hair, only about 5% of my legs and arms have hair, if that much.
About 3 years ago I was having severe stomach issues, losing about 20lbs in 2 months. I've always been into diet, nutrition, working out and living a healthy lifestyle. After an endos/colonoscopy the doctor told me I had crohns disease....Well about 2 weeks went by and I figured oh well I will have to live with this terrible disease and went on about my life....The doctor called me up and said he sent my biopsy to a second lab who concluded I DEFF DID NOT have crohns disease and he wanted to do further testing to figure out what was causing my digestive issues. I did test positive one time for the antibodies which are markers for crohns but they cannot give a diagnosis. Anyways a few months went by and all the sudden my stomach was fine, the issues all resolved themselves and I gave up with the doctors and decided to clean up my diet and see how life goes. I have never again had an issue like that again with my stomach, although I do suffer from IBS which runs in my family.
First run in with AA: About 2 years ago or so I had my first patch of hair missing on the side of my head. I immediately realized it was AA and decided to go to the derm and get an injection of cortisone which cleared it up in about 2 months’ time. Let me tell you I have extremely thick black hair....as thick as it gets and wavy. Well that spot cleared up and I never thought about it again.
Today: Now two years or so later and it’s back, but worse. Exactly 2 months ago I had a small bald spot show up after a haircut on the side of my head above my ear. Now this spot has turned into 8 spots all around the side of my head. It has completely devastated me and made my life a living hell. I know exactly what it is and that only time will tell if it grows back, and or stops spreading around my head. The thing I am interested in is if this is in any way connected to the stomach issues I suffered from years back. Could this be my immune system attacking my hair now instead of my stomach?? I have had more cortisone injections over the last two months but feel I am done with those. I am one of those people who do not believe much in modern medicine, and refuse to go on oral prednisone as my derm mentioned, suggesting we try pulse prednisone therapy.
I am currently awaiting blood results to see if anything checks out in regards to my hormones and vitamin D levels....I'm hoping something shows up which can explain this, but as many of us are aware most of the time everything is perfectly fine! I do think this is possibly stress related, considering the stomach issues came about in a time of high stress/anxiety and this current episode with alopecia is taking place during a very stressful time, the current hair loss is making things much much worse.
Replies to This Discussion
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Permalink Reply by Pat on
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Apparently if we have one auto-immune disease we are prone to others. Crohns is also auto-immune and can be very debilitating...I'm glad your tests weren't conclusive and that it resolved itself so quickly. So sorry to hear your aa is progressing, yet it too may resolve itself, you just never know what this ridiculous disease is going to do. Whatever happens you will learn to live with it, as we all eventually do, but getting to that place is an emotional roller-coaster. I wish the best for you and at the very least you have found a community who understands how traumatic losing our hair is.
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Permalink Reply by Tallgirl on
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I have noticed in older years that one does not have the throngs of same-age peers around with whom to create adventures, so please do not let all this get in the way of making memories, having laughs, taking addresses, and snapping photos of good times. Wear a hat, beanie or do-rag, and just be a 25-year-old. You can't get it back later, when everyone starts having families, job duties, etc. Make time for You Now so Future You can look back and smile!
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Permalink Reply by Christine on
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Justin,
I'm sorry to hear about your stomach woes, I have a son named Justin with the same type of issues with his stomach, but his has never cleared up, he has good and bad periods with it, he has been told he doesn't have Crohns too, but has most of the symptoms that would suggest it, I know it's auto immune too and very hard to get a diagnosis on. I'm glad to hear you are doing better in that regard. Now as to the AA, I'm sorry to hear that this is happening, I think stress can make it worse for sure, and it plays a role, but not always, losing your hair can stress you out more than anything, I developed it when I was older, and had experienced many upsets and stressful times in my life before and never lost my hair over it, so don't make the mistake of thinking that how your feeling, or what you are thinking is causing this to happen. You did nothing to bring it on! That whats so frustrating about AA you can't control it. but you can control how you are going to face it and deal with it. We have a lot of options I think some are easier for women, like wigs and such, but I've seen some great ones for men, and I was shocked at how great they looked, but you don't have to think about that now, and maybe never. Good for you for not doing the prednisone, your far too young and healthy to mess with your body that way, prednisone is a very powerful drug, and while it may make your hair grow back, it can rob your bones of calcium and you blow up like a blimp, not good. I agree with tallgirl, do your best to enjoy your life. I know that this is tough right now, but more than likely your spots will grow back again. If it has indeed stopped falling out you should see regrowth in a few months, I know it takes so long, but the statistics are on your side. Keep us posted on your progress. I'm truly sorry that your dealing with this right now.
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Permalink Reply by Me&myGirl_Aussie on
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I am not trying to sound negative but are you getting tested for all autoimmune diseases?
This list is huge, and I think its a good idea to have all tested and know that you are clear....my daughter is under close watch and will be tested every 12 months, as she already has hashimoto disease and alopecia (also eczema), at the age of 9. She is currently undergoing DCP treatment, and I am starting a Anti-inflammatory diet for us, as its not so much the hair issue, its her health I am worried about, her hashimoto is as bad as mine that she is a third the size of me and taking the same amount of medication.
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Permalink Reply by JHen on
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FOLLOW UP:
So since writing my post a few weeks ago I've gained more knowledge of my situation.
Not sure if I mentioned I got a scalp biopsy done in my last visit with my dermatologist, some interesting results to say the least.
-I've recieved a copy of the results myself along with all my blood work ( I like to always review my own results aside from just taking the doctors word). With that said my scalp biopsy came back as Telogen Effluvium & signs of Androgenetic alopecia. This is all very interesting considering my pattern of hairloss and the way it's all come together. Let me first note that my dermatologist had my biopsy reviewed by others and they all say the same, TE & Androgenetic Alopecia. First let me say my hair loss is completely that of someone with Alopecia areata (patchy all over, (typical alopeica areata look, perfect circles all over 8 or more) and the diagnosis of androgenetic alopecia is actually more confusing. Prior to my first patch appearing a few months ago I had no other hair loss, since other patches have appeared I've shed approx 30% of my hair over my entire scalp. Before this first patch appeared I had nice thick, black, healthy hair & VERY THICK FULL HEAD. Now I dont know what's going on the shedding is still going on at an alarming rate which seems just like TE, the patches are all still there, but the androgenetic alopecia diagnosis showing up consfuses me? And the fact that they scanned both of my biopsies for everything to do with Aloepcia areata, yielding nothing for that diagnosis. So as of now I am not taking any sort of treatment, medicine or injections. I have buzzed my hair off and will let time tell and take the course. If I did not get the biopsy I would assume, as with two other dermatolgoist who have seen me, that I have alopecia areata.This is so frustrating!!! I'm as confused as ever now, I would be happy if it was just TE, but it's patchy and shedding. But the doctors are sure its not Alopecia areata. The only interesting thing on my blood work was low iron and lower blood counts.
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Hey it's been a few years. I'm interested in what happened. How did things pan out for u?
Halewhy
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My alopecia has been a roller coaster and I started Xeljanz in 2014, with great results. I did not get anywhere doing the natural route.
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Did u ever get a firm diagnosis? I'm asking because I was diagnosed with alopecia areata a long time ago. Went through a flare up over the summer and was put in prednisone. I told doc I was anti steroid but he assured me with low dose there would be no crazy side effects. It made me extremely irritable so after 2 months I wanted off. I had to taper off of course. He said I would have mood improvement and MORE HAIR LOSS!!! I never would have gone on this drug had u known. He said I'd lose anything I gained. I accepted that and moved on. Things seemed to be good. Spots grew in despite being off the pred. A few months later my hair started thinning rapidly all over. No spots just diffuse thinning everywhere. I also noticed my body hair thinning but growing in clear. What hair stayed I could see suddenly lost color. That's where I'm at now. Eating to see if this is TE from the pred or if my Alopecia areata is morphing. So aggravating. Did u find out what your TE Was from?
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That's what I'm thinking. I'm hoping to find someone else with AA who went through the same thing.
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Hey tori, when u went through TE did you notice lots of white hair? This isn't the same as when I've had AA spots growing back in, my body hair is snowy unnoticeable cause it's clear/white. And my eyebrow hair I can see as its growing longer has gone from brown to white. And same with the hair left on my scalp. I did go grayish early but NOT like this. From a distance it looks like i have no eyebrows but up close I can see a lot of light long hairs. Did u experience this? I cant find much in hair losing pigment. Ugh. These bodies!!
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