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Discussion in 'Looking For Advice (my story)' started by briggscreek, Aug 1, 2009.
Sorry I double posted.
Ugh, I just wrote a long reply and got an error message when I tried to submit. I have an autoimmune disease which I've been treating with immunosuppresants for over a year. Apparently, my monthly blood work has shown me to be slightly anemic for several months, but we didn't find out about the low ferritin level until I requested it. My derm says that this could definitely be causing the shed and he expects my biopsy to show telogen effluvium. He also agreed that the high number of follicles entering the telogen phase could have triggered the scalp pain. I do think it may have improved some over the past few days.
To be honest, I feel terrible. I hadn't been feeling well anyway, probably from the anemia, but now my autoimmune stuff is starting to flare and I can barely function. I'm hoping to get my blood levels back up quickly so that I can go back on some meds.
I'm sorry your not feeling well and also for your autoimmune condition.
I guess it sort of makes sense to me that you would have this since you have something going on with your immune system. For me I had a battery of testing through two Rheumagologists and nothing came back abnormal no lupus etc but one blood test did show inflammation and I also have chronic high cortisol. I feel this is part of what is wrong with me. I am so tired some days getting out of bed is very hard as is walking up stairs etc. I am pretty certain my ferritin has gone low again because I use my fingernails as a gauge plus I get really pale and tired.
I do hope this clears up for you soon. How long have you had the scalp pain?
I've had the scalp pain for about a month. It seems to have improved over the last couple of days, but the hair is still falling at an alarming rate. It's noticable now along my part. I'm feeling so sad right now, I've always been so proud of my hair and now... I don't know what to do, I guess I need to get it cut again, I just cut off about 6 inches a couple of weeks ago. I'm getting tired of picking up three foot long hairs anyway. My hair has been waist length since I was a small child, I don't think anyone will recognize me with short hair! I'm really hoping raising my ferritin levels will fix this but it takes such a long time.
Are you using Rogaine? My scalp is buring as well and I am praying it is from that.
i'm pretty new here but i think what you have is Trichodynia. I have it too and it even hurts to move my hair. sometimes it feels like someone is literally stabbing me in the scalp. also one thing to look for with AGA is parting your hair down the middle if your part is the same you are just thinning - if it is more of a christmas tree pattern its AGA. that's what i read anyway - i am not a doctor
Some doctors I spoke to seem to think when you have many hair follicles ready to shed it causes a chemical reaction/nerve release in the scalp which causes inflammation and pain.
Other theories are that the layer of connective tissue under the scalp becomes inflammed like in autoimmune disorders and causes TE like hair loss.
Then the theory of androgenic alopecia and scalp pain from inflammation. My husband is bald and back 20 years ago when he started thinning he complained his scalp ached. I thought it sounded nuts. In hindsight what he had was some sort of AGA inflammation. He also has thyroid disease so that might have played some role. But if your scalp is burning violently, a pain that is more then annoying it's probably not AGA but an immune response to something happening in the follicle/scalp My dermatologist who is a hair expert said AGA folks to not have painful burning scalps, most likely the cause is something other then aga.
My derm told me most often it's not scarring but she does not know what it is for certain. An allergic reaction perhaps to mites, sebum, DHT who knows!
whatever it is it sucks and so does hair loss! Please God find a cure for this for me and everyone on this site PLEASE!!!!!!!!!!!!!!