I lost a lot of hair , too. I began taking testosterone acetate ( as I had none in blood tests) and have regrown most of the hair.

I wonder if this is related to Addison's or is auto immune ? Have you asked the Endo and have you seen a dermatologist?

What a difficult situation, hope you are able to find a solution.

Thanks for your response. I will mention that to my doctor. I've seen a dermatologist at the beginning and all he did was give me cortisone injections and some hair loss spray. I am under the care of an endo and my family doctor. I will mention this to both of them. I stopped seeing the dermatologist because he is a really creepy doctor and I didn't feel that he was much help. My family doc doesn't think those things will help anyway, he feels there is much that can be done for the hair loss.

Hi, was was diagnosed with ad but then diagnosed with adrenaline fatigue. I still think its addy. Anyway, right now I've been in middle of a crisis. All of my hormones are at zero and acth are at 690 . (cortisol, testosterone, estrogen, dhea, vit. D, ...) I'm not Able to walk. When I use bathroom I feel like I've run a mile just to walk there.I can't shower I have to sit in the tub. I can't.stand. that long. I feel like a prisoner in my own body. on Christmas eve and day I was sick. Everyone having a great time while I laid on the couch. I break down and cry a lot because this sucks so bad. I understand your pain even though we are having different symptoms. I understand your emotions in every single way. We all do here. My advice would be to first.... be happy your alive. Many ppl die because it wasn't caught on time. Also being depressed causes stress and that's the last thing you need. Its hard believe me I know. I don't let it bring though. If I'm in pain but want water my husband will want to get up n get it for me. I get mad that I can't do it. I can effin walk so I suck it up and try myself. Of course I make a lot of stops but I feel better about myself. And 2nd ask your Fam doc to run bloodwork on the hormones that your adrenals produce ( the ones I listed above) also if its possible.... ask for a saliva test. This will give a better indication of your cortisol. My endo is too dumb to know all of this. I found a Fam doc a minute away from my house and he knows a lot about hormones. Find a Fam doc that will benefit you. Endos will only check you every 6 months whereas a Fam doc can check you weekly.( I mean they check blood work and keep an eye on ALL my hormones.)

I'm a 25 yr old newlywed teacher...this stupid disease is not going to stop me. I just started.


Good luck,
Crissy

Hi! I am 7 months diagnosed but I also have autoimmune polyendocrine syndrome. My hair was falling out as well. Bald spots! I cut off 22 inches. Not only can I not walk or stand or stop crying etc but then I had to cut off all my hair. My eyelashes also fell out when I was 7. I went to soooo many drs and had so many tests to try to figure out why.....no answers Now twenty years later I'm diagnosed with addisons. My hair has grown in a bit but my eyelashes never grew back! Check out APS! Alopecia is a part of that. Do you have thyroid, parathyroidism, diabetes, pernicious anemia....anything else? Or just ADDISONS?

*hugs to you* I have Hashimotos, Vitiligo, and was just diagnosed with Addison's. I had my 1st baby in January of this year and 6 months after I started losing my hair, then came extreme fatigue where it was really hard to just get up to stand and extremely hard to walk short distances, then my skin started getting darker then it had been during pregnancy and a few other things but I just contributed it to postpartum hormone craziness until I landed in the hospital and my blood pressure wouldn't come up and I was looking like death because of being so dehydrated. Luckily I haven't lost all my hair as I had super thick hair to begin with but I am still losing some hair. Most of the hair on my arms and legs is gone, I still have some but not nearly as thick as it used to be.

My Endo said that within 6-12 months of beginning treatment hair loss should stop completely and hair should start growing back. However, as I'm learning this disease is very cruel and very unpredictable! I wish you the best of luck.

I don't know anyone else who has this disease but my hairstylist in town told me of a young girl in my town who is 4 who has Addison's and she has lost all of her hair on one side of her head. :( So sad.

Good luck to everyone!

My hair loss was related to hypothyroidism. It has gotten much better now that I am properly medicated.

Wow, thanks so much for all the excellent info and responses. I have an appt with my endo in January and plan to mention some of this stuff. I did some research on the internet and found an all natural supplement for hair growth. I'm going to give it a try because at this point I'm all out of options and willing to try anything. I am thankful I feel pretty good most days, but I have to admit I do miss my hair. Especially for things like swimming, watersliding, etc. I know that might sound silly but it's been 2 years and I'm fed up with having no hair. Thanks again for all your input, it is much appreciated.

I too have and am losing hair and yes I find it depressing. I am using a new product suggested by my stylist for thinning hair and I shall see if it works. it seems to have cut it down. I's called Bosely I think. I will have to look it up as I'm in hospital for AD and don't have it to list it here.

Happy New Year to all of you!

Goodharborgirl aka Jill

This must be very distressing. If you've lost most of 'body' hair, consider the possibilty of having no nasal hair. I know this may sound odd, or possibly crude to some, but it can be a concern: Seriously consider applying a topical OTC antibiotic around & to nostrils. This will act as a barrier against inhaling air-borne viruses. It's flu season & we have all have compromised immune systems. Something so simple could prevent added suffering.

Although I don't have alopecia, I had thinning hair, when I first started taking HC. Clumps were falling out, by the handful. My hair is now thicker than ever. There are a few non-hormonal supplements, which may be worth looking into:

-Biotin
-Three Treasures Tea (not really a tea, by: New Spirits Natural)
-Sea Buckthorn, can get anywhere, ex: Drugstore.com. (amazing goodness :)

An added note of hope?: I understand this is not the case, but a somewhat similar analogy. When cancer patients lose their hair to chemo, eyelashes are the last to re-grow, years & years.

Heartfelt wishes Annette & mb232.

@annette:
i can't imagine losing all of my hair. i watched my best friend go through it w/her cancer, and it was heartbreaking. but from AD? it's just so infuriating - it seems like everytime we kick one side effect, another one - usually more difficult to handle - comes along. this hair thinning is driving me crazy, so i can't imagine how you're feeling. i'm so sorry that you're dealing with this.

@cam:
is the testosterone acetate something you have to be prescribed?
what form does it come in - and how quickly did it help your hair? i'm so glad you got good results!

@jill:
how did your product work? have you been using it?

@lunar:
what exactly do your three products do? are you having much success? i hope so. i also hope you're doing well!

here's to all of us getting ALL of our hair back!
xoxo, missy

TO CRISSY, you need to get to a hospital. If you cannot walk you are in a crisis and could DIE. You need cortisol introvenous!!!!! I have had addison's for 20 years and I can always walk. Please go to the hospital!!! As far as the hair loss, I had long thick hair and it comes out in handfuls, but I am getting checked out for autoimmune disorders right now also. It has been going on for years. I have long thin hair now. No bald spots yet, but that was probably because my hair was so thick.

@ange:
chrissy wrote that back in december, worry not! also, she's very good about paying attention and taking care of herself in a crisis - just thought i'd let you know about the date since you were so concerned.
sometimes older posts get puled back up, and since we're used to the posts being current, it gets confusing ... just an fyi!

xoxo, misa

Hi crissy 25 You said something I had to comment on Sometimes I want a vacation from my own body wish that was possible. I have been very ill for almost a year now Im a nurse and lost my job just too scik to work. Im like you I dont have autoimmune but have all symptoms of ad excet yperpigmentation of skin. Couldnt get help from endo told me he thoyght I had ad but then said it was hypothroidism. I did find I dr. that working with me but its a long process. I had a lot of hair loss too and I had long preety black hair which thinned out a lot althugh when they added synthroid it did improve. Thank GOd for that. Any way are you on Florinef? How are you doing. My heart goes out to all suffering with this terrible disease wow I had no idea it was this severe. They really dont know why my adrenal were failing I had chronic sinus infections for 20 years and tood lots of antibiotics and still taking plus steroids so I think that damaged the adrenal its ashamed because Dr give it our like candy not realizing the long term effects of the drug. Wow I wish I would have known that years ago. Prayers are with you all. Please respond

I sympathize with you, my friend, and I want to say that this is happening to everyone around. Seriously, every second person is suffering from alopecia now. It's hard to believe, but I faced allopecia at 19. When doctors find out my age they fall into a stupor, therefore they have never encountered such a situation. Medications and hormones do not help me, and my last chance to get my hair back is an operation. I am seriously thinking about hair transplants, because I have no other choice and I do not want to be bald at 19 years old. For some bald heads this is brutal, but not for me. I read about the consequences of the operation at http://thehairlossadvisor.com/hair-transplants/ and I'm pretty scared. Please advise me if I should undergo surgery at all or is it dangerous?

I lose alot but have alot.My hair did become somewhat wirey though .Stared shortly before diagnosis.