Alopecia World
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Newbie and afraid
Hi.
I was told in feb that I have AA. Since finding the patch in Feb, I have a 50p size patch just above my ear and it's starting to spread up my hair line to my middle parting. The strange thing is I still have hair in the patch, just very thin and very spaced out. I've been told not to brush my hair when wet, not to use my hair dryer, and not to use my straighteners. I was also advised to use alcapin shampoo which just dries my hair out. I've been given steriod cream and have been using for two months. The doctor said he won't refer me to a dermatologist as they don't like giving steriod injections anymore.
I just don't know what to do. Can anyone offer any help x
Replies to This Discussion
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Permalink Reply by hoofpick on
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Hello all newbies, I am also newly diagnosed with AA, it all started in Jan. 2014, I too have had long very thick and fast growing hair my whole life. But in Jan. it started to fall out, I was not concerned because secretly I have had lots of challenges with the thick hair. Feb., it still kept falling out, no bald patches just continuesly falling out, lots and lots of hair in bathtub, on floor when styling. By March it was getting thin all over, hair changed its normal thick, somewhat coarse texture to wispy thin strands, color even changed because by March I quit going to stylist to color roots.(no hair, it was not growing!) I am 56, went gray in my 40s, somewhere. The end of March I started wearing caps, it is so thin I can wear a cap, never could before it was so thick caps never fit right! Beginning of April I went to the dermatologist, she did a scalp biopsy. She thought it was TE, but it came back in two weeks with AA. She gave me some liquid steroid,(clobetasol) to put in shampoo to wash and leave in hair once daily, then wash out. I have been using this for two weeks and it is not working. I still have my eyebrows, hair growing slowly on legs, still have facial hair, it grows normal, but my arms lost hair. The dermatologist sent me to a regular MD, they have done a complete blood test, I’ve had a mammogram, pap test, all came back normal. So I went to another MD, they do natural medicine. They are doing hormone and adrenal testing, a food allergen test, they aso did another type of thyroid test. The thyroid test here came back high. But instead of putting me on normal thyroid med’s, they are going to do the food allergen, meaning what foods I show I’m allergic too, I will stay away from. They will give me a menu to strictly stay on, for 3 wks and see if my levels drop down. They call it a cleanse. I have also started reading Sarah Ballantynes book: The Paleo Approach, Reverse Autoimmune Disease and Heal Your Body. Its all about eating foods organic, for one, non-inflammatory foods. I do not know if this will work, I have just started this process. I’m looking at wigs to wear til this is over. Believe me I have cried and feel hopeless, helpless to what has happened, had people look at me, tell me to try not to stress, most people think its all about stress. Reading these blogs with other people like us, has helped. Thank you to this site, thank you for all your comments that I have read, its a godsend. I just know there is no cure for this, some things work for some and not for others. I just don’t want to sit and do nothing, while there is a war raging inside my body, its a helpless feeling not being in control.
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Permalink Reply by Ellen Chinery on
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Hi Hoofpick!
I'm sorry you're going through all of this. It can be so painful just to get through the day. But I am happy that you've found some support on this website. It makes me feel not so alone :)
I did want to say, I'm interested in finding out how the Paleo diet works for you. I have recently begun eating clean based on an anti-inflammatory diet. I figure, the hair loss seems to worsen because of an auto-immune inflammation in my hair follicles, so why not give it a shot!
Be well! :)
Ellen
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Hi Ellen, I haven’t got my results for the tests for what foods I am allergic too yet, the book I bought is for specifically Autoimmnue Disease, like us, but Paleo, which I take to mean gluten/dairy free. But it is really strict and thorough, I am finding it difficult to go by, most of the foods I eat are NOT on the list, say like vegetables, green beans, peas(are not on the list), then alot of them I have never heard of! Almost most all fruits are fine. In this book she says to stay on this diet til she calls you go into remission. Then work in some of the old foods, see how your body reacts to them, I am thinking, for us it would be losing our hair again. I am also amazed at what gluten is in, everything! Shampoos, toothpaste,makeup, canned tuna, etc., it goes on and on! If that is so, my pantry and closet is full of gluten! It will be a slow transistion to this. But you are so right, we have to get the inflammation down first. I envision a war going on in my body. For us newly diagnosed it is a very hard transition, newly losing our hair is really hard. That terrified feeling of what is going on? How do I control this or help this when the Dr.’s don’t seem to know or from some of the posts, even have any compassion for us. Its others like us, support from close family,friends, maybe a support group? Have you ever gone to a support group for AA,AU,AT?
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It has been a hassle to try and eat according to the guidelines! Lol. But I'm giving it a shot, and if anything gets better, I think it'll be worth it. And if not, at least I tried it out :)
I've been doing all kinds of research on autoimmune conditions. And most of my family is affected with something...lupus, diabetes, inflammation of the eyes, thyroid conditions. It's crazy! Sometimes I feel lucky that my immune system only attacks my hair :) But it still is very painful at times.
I do go to a support group once in a while. I live in NJ and have not found one here. But I'm just a train ride from NYC, and there is a support group there once a month. It has been very helpful. I just wish there was more support! How about you? Have you found any supports nearby?!
-Ellen :)
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Hi It`s so, interesting that many posts refer to autoimmune conditions being responsible for losing hair. Never heard this in England , but have heard that genetics influence is a factor. I did have a bad reaction to flu/pneumonia one winter and my immune system took ages to recover (still feel at risk of fatigue ) It made me aware of eating a more health diet, cutting out food additives and also looking into vitamin and herbal supplements. Two of my family are actually Vegan by choice, one has very thick hair and the other has fine hair ! Neither are losing it though. My alopaecia is stable, maybe lose a few more hairs every year as I get older (over 60 now boo hoo !) Had a bit of luck this week, found a small hairdressing salon which deals with wig suppliers, actually found me a mini-wig which blends with my own hair at back and sides while covering bald patch on crown. It`s real hair. These are called "top-pieces", "part-wigs", "toppers" etc.and there are some online. Very natural looking, reccommend worth a try. Stress and fretting adds to hormonal imbalance/causes, so although a big struggle and gone through all phases (reclusiveness, panic, tears,low self worth) have now accepted my condition for what it is and do feel better about it Refuse to let this thing dominate my entire life ! Using more make-up and taking up new interests.. still have moments of resentment of course :-) keep smiling x
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Hi magda, at the one wig store I went to get my synthetic wig, the woman who worked in the store, she had had leukemia, she had gone thru two chemo treatments, she is in remission and though she now has her head hair, eyebrows and eyelashes back now, she is still wearing one of your hair topper pieces (you wrote about), it looked fantastic. When and if I get that much hair back it is a great option as it looked so natural, you would never have known. If she hadn’t popped it off to show me, I would never had guessed. Kay :)
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Where does the time go? It doesn’t seem that long ago I was on here, my allergens tests for foods have come back, they tested me for 96 foods, I am high on the levels for all but 12 of them. I Do not know if that is normal or not, but pretty scary. As of now I am permanently gluten free. In my cleanse I am on now, I cannot have any dairy, eggs or soy(gluten free too of course). There are also some other foods to stay away from for 6 wks, then some others to stay away from for 6 mths.. I am on supplements, with a smoothie/shake in mornings, afternoons,evenings. I can have any fruits(except bananas, as I showed a high allergen to them :(). First week was eating any vegetables, fruits, some meat, lamb, chicken, alot of fish. This week is vegan week,(fruits & vegetables, beans, rice) but because of my low blood sugar, I get to eat fish with the others, for 7 days. It is tough, because we were trying very hard to stay on organic, but organic meat, fruits, food in jars or cans, some box food like crackers, wow, the prices are horrible. A hundred dollars in organic is a very small amount, where before a hundred dollars would fill a shopping cart. I have looked into farmers markets, but some vegetables and fruits are not in season yet here. I have looked into the organic farm co-ops and farms. It is still expensive. So Dr. said to try and get organic meat, but fruits and vegetables ( except leafy green vegetables, lettuces etc.,kale) we could buy normal produce. We have been trying alot of different fish, I am not a fish eater, but now I am. LOL. The clerk at Kroger’s Marketplace was so helpful, he told us about the different fish, they have cooking bags behind the counter and they season it all free. It’s as simple as popping it in oven and its delish. Anyway I have not felt any difference(it’s only been the second week), when I get tested again, we will see. I do not know if this will bring my hair back either. Maybe, Maybe not. I am getting used to a wig, I went to the expense and ordered a real hair wig(with a close match to my original hair color), which I am not happy with. It cost a bundle, I happened to go to another wig shop that sold on the shelf wigs and I bought a synthetic hair wig, that looks and feels wonderful, its light and doesn’t itch as much and is not hot at all. I ordered another synthetic wig online but I am not happy with it. They have a 25 percent restocking fee. Live and learn. That what is going on in my world now. No change can be a good thing, as it could get worse. Kay
Ellen, I am in TN, now, but lived in PA (20 Yrs). How I loved NJ, we loved coming to your seashores every summer!! I miss it so. I have not contacted any support groups as of yet, there are not any close to us. But I have a number to one an hour away, closer to Nashville. I have yet to find any family members who have anything close to my condition, mom has a thyroid condition, a very young neice was just diagnosed with digestive problems with gluten in the last week though.
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Ive been looking back at previous photos and found a photo a year ago which shows the bald patch so ive had this for a year now without realising. I now think this could be traction alopecia. I havent straightened or tyed my hair back for months. Im going to see a hair specialist in a few weeks as they will be able to give me more information before I see a dermatologist. I want to thank you all for your support as it means so much to me. People who havent gone through this I find cant offer me support. X
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Hi,
Am new to this site but struggled with losing hair for a few years now. My alopaecia is different to yours, kind of slowly thinning from the crown and sides and not growing back. Was only referred to a dermatologist last August, he didn`t suggest any treatment at all. This is UK Health Service which varies all over the country. Eventually I found that I can have a wig or hair extension but have to find a salon on the High Street which is approved by the Health Service. There aren`t many at all but I`ve tracked one down so here`s hoping...! However, re: steroid creams and injections, no way would I risk using them or any other harsh chemicals. They damage the skin with continual use or cause allergic reaction for some people (I`ve seen these creams prescribed for dermatitis etc. and after short improvement sometimes,all goes downhill)It`s so hard because our first reaction is desparation and want a quick "cure". Fact is, all research indicates that there isn`t one that works for us all and hair loss has many causes. Best thing is to be gentle with hair and scalp, massage with natural oils,wash with purest shampoo, condition with home-made avocado/honey/egg-yolk/rosemary recipes, there`s info online and at health stores.Then experiment with hats,cute hairbands and scarves and fake hair . Mine isn`t likeley to regrow so I guess will end up with a good hair-piece or eventually a wig but good care will delay this I hope. Acceptance is a relief but I still wish this hadn`t happened to me for sure. Good luck, remember that folks will still love you for being you the person. Ditch the straighteners, give your hair some TLC , please don`t be afraid, you are in control and have support.
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Permalink Reply by Pam D. on
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You should see a dermatologist; you certainly can get injections. The cream didn't work for me, but the steroid shots seem to have as my hair has been growing back since Aug. (still have to figure out if it's the shots or a cycle). After losing 80% of my hair, I have most of it back (this is the second time I've lost it and had it come back). I discontinue the shots when my hair stops falling out; I'm keeping an eye on it, as the first sign of fallout, I'll run back for more shots. I would get a new PCP asap, one who will refer you to a dermatologist, or INSIST the one you have refer you to one; you're the patient and you need treatment NOW! Is there another doctor in the practice you can transfer to? Might be quicker. If you can afford it, maybe you can just pay the dermatologist out of pocket. When I was out of the area, we had to pay for treatments and it wasn't as much as I thought it would be. I think I paid $60 +- for a treatment, which I had every 6 weeks. Call around. My co-pay is $40, so I wasn't paying much more when we paid for the treatments ourselves.
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Hi Pam,
Glad you are responding to whatever treatment you have been offered.. As I said, I was referred to a dermatology clinic at a local hospital. They told me that I have the sort of alopaecia "that won`t grow back". (Not AA then) Thanks for advice , but I absolutely wouldn`t put trust in steroids as a long-term solution for anything even if I was offered the injections into my scalp. Here in UK, we are assigned to a Doctor`s surgery which is a group practice, they all confer..all say no treatment will work on my condition..as did the derma clinic. As far as I know, no private "trichology" clinics exist outside London which is many miles away ! I am OK with caring for my hair and scalp to prevent it getting worse, and finding a suitable cover-up, just rather be calm and accept the situation unless I hear of something SAFE that works. Good luck in the USA, it`s obviously all different how healthcare and sale of wigs operates over the pond ! Take care .
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Sorry, I misunderstood. Sad to say, I think you have given us some insight as to how our healthcare system will be changing under Obamacare. I have made peace w/my condition; I accept the times I have to deal w/fallout and little hair, and rejoice when I do have hair. It takes a long time to come back, so it's not like I'm dealing with it over short periods of time. But, I do consider myself lucky; I expect someday it will all fallout, never to return. Good luck to you; I wish you well.
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