Scalp burning and hair loss

[briggscreek]

Update - I requested more lab work and it came back today. My ferritin level is 17 on a scale of 11-200 and my iron levels are at the low end of normal. My doctor's office called this morning and said that my labs were normal but I went and picked up a copy. White and red blood cell count is also low. I am so upset because I've been on immunosuppresants for over a year and now I'm sure that is what caused this, I've been told my labs were completely normal every month. I called the office back and asked about the ferritin. She said since it was pretty low, I could take iron but she's never heard of ferritin impacting hair loss. I guess she must not have internet access because it didn't take much for me to find a connection! I've stopped taking the meds at the advice of my derm and have no idea what that will do to my autoimmune condition, but hopefully the hair loss will resolve itself. Does anyone have any experience with low ferritin and regrowing hair? I'm afraid that if this is the cause, I'm going to lose so much more and it won't grow back. :(

I'm 33 and have always had very thick, waist length hair. A few months ago I started to shed much more than is typical for me and a few weeks ago my scalp started constantly burning. It hurts to move my hair in some areas. I saw my derm who didn't find any problems with my scalp, said that my follicles were full (whatever that means) and gave me some topical steriods, which haven't helped at all. The constant pain and burning is making me feel like I'm losing my mind, I can't function. I've had a battery of blood work and was told everything is normal. My derm told me that it's unknown if the pain is related to hair loss, but it seems pretty obvious to me. I'm so scared right now, I'm shedding a lot every day and have been taking xanax to cope with the anxiety from the burning. I haven't been on birth control or had any recent illnesses or anything unusal. Has anyone experienced anything like this and have any advice?

[VictoriaG]

I've been shedding for 2 1/2 years. Supposely I have AGA, but I'm not sure that diagnosis is correct. I've gotten the burning, usually with itching, on and off over that time. I'd gone about 6 months with no episodes, right after I started taking spiro, so I thought the spiro was the reason. Nope, because it came back. About three weeks ago it happened again and lasted for 2 full weeks, it's never lasted more than a day or two before. It subsided with time, but nothing I did could stop it (various shampoos, pain releavers). I believe that it is related to hair loss, too many of us experience this for there not be a correlation. Yours seems to be lasting a very long time, I'm really sorry I have no other advice. All I can do is sympathize and say that you are not suffering alone. feel better and good luck.

[finaleofseem]

I don't have any answers as to what it is or how to stop it, i just wanted to say that i get it, too. You're definitely not alone.

Sometimes when it gets really bad, I put an ice pack on the worst areas, and it seems to help a little.

[Elissa]

I get it too every so often. (it happened 2 nights ago) I have tried taking Aleve when it happens to see if an anti-inflammatory would help, but it doesnt :( Does anyone know if any OTC pain reliever would help with the scalp pain?

Sorry I am not of much help.. But you arent alone *HUGS*

[briggscreek]

Thanks for the replies! I've tried just about every OTC pain reliever there is with no success, although tylenol seems to take the edge off. Ugh, it seemed better yesterday but this morning it's already burning again. :(

[VictoriaG]

Even though I think something internal is causing the pain, you might want to try a tea-tree oil shampoo, it can be calming to the scalp.

[shyla]

I know this sounds weird but, have you tried ora-gel? Or whatever OTC name brand for numbing gums? It may help? If your on Spiro watch taken anti-inflammatory medications....increases potassium sometimes

[briggscreek]

I've been using tea tree shampoo and it does seem to help a little, it's not as bad in the morning. I'm not on any meds yet, I'm still waiting for some blood work to come back to see what could be causing it. I've been taking fish oil, vitamins, and primrose hoping to get the inflammation down if there is any. When I touch my head, I can feel little poky hairs all over, kind of like stubble. Does this mean new hair is growing in?

[VictoriaG]

Shyla - thanks for the info about spiro and anti-inflammatories. I've been careful with foods, but I didn't know that part! And Briggs, stubble could mean some regrowth. I really hope it is for you!

[briggscreek]

I'm supposed to call my derm this morning to schedule a scalp biopsy since the burning hasn't stopped. I'm terrified that it's some kind of scarring alopecia or something, that's what I get for googling. :(

[VictoriaG]

Catch-22...googling helped you find this site, but research gave you more to worry about!!! I'd had a biopsy 2 years ago, the results indicated AGA, but who knows. I do have the burning, but I definitely don't have the scarring alopecia (it actually said on the biopsy results that it was non-scarring). I wish you lots of luck, and I hope you feel better.

[briggscreek]

Catch-22...googling helped you find this site, but research gave you more to worry about!!! I'd had a biopsy 2 years ago, the results indicated AGA, but who knows. I do have the burning, but I definitely don't have the scarring alopecia (it actually said on the biopsy results that it was non-scarring). I wish you lots of luck, and I hope you feel better.

That's true. :) I usually don't google because I have anxiety problems anyway but since my derm couldn't tell me what it was, I had to try to figure it out myself. I found plenty of evidence that burning can be involved in any type of hair loss, I'm just glad that my derm is willing to do a biopsy so soon. Does it hurt after the biopsy and can I still shampoo and apply topicals like usual?

[VictoriaG]

I had a headache the night I had the biopsies done, but that's all, I don't remember any residual pain at the biopsy sites (I had 2 near each other). I had to clean the area twice a day, use neopsporin and gauze pads (that was fun to figure out, paper tape doesn't stick to hair veyr well, LOL). I was absolutely allowed to wash it. I'm not sure what topicals you mean, if it's mousse and gel, I would just avoid applying them in that area till after your follow-up visit (back then, I didn't use those things).

[briggscreek]

Update in first post. :)

[VictoriaG]

Doesn't it make you absolutely crazy when the doctors say basically "no, you're wrong", like about the ferritin, and scalp pain/hair loss. I started taking slow FE (my ferritin was 25) on my own. I don't know if it helps, but my iron levels have always been low, so I don't think it's a problem. I do get my blood checked every few months because of the spiro, and we watch my iron too.

Please be careful about your immunosuppressants. You are quite probably right about the connection, but we don't want to see you get sick!!!

[briggscreek]

Doesn't it make you absolutely crazy when the doctors say basically "no, you're wrong", like about the ferritin, and scalp pain/hair loss. I started taking slow FE (my ferritin was 25) on my own. I don't know if it helps, but my iron levels have always been low, so I don't think it's a problem. I do get my blood checked every few months because of the spiro, and we watch my iron too.

Please be careful about your immunosuppressants. You are quite probably right about the connection, but we don't want to see you get sick!!!

Thanks, it was my derm's suggestion that we stop the meds to see if they were causing the hair loss. I'm not sure what's going to happen as far as that goes. I have psoriasis that was basically controlled by the mtx, so going without is a little scary. I really do think that this may be the cause though, but it takes so long to raise ferritin levels - I'm afraid that I'm going to lose a lot more hair. If this is actually the cause, will my hair grow back once it's resolved?

[VictoriaG]

That is sooooo hard to answer - I honestly don't know. Logically, it should, but none of this is logical. I am one of the believers in stress being an aggravating factor, so let's think positive!!!

[ouchy]

Hi there I also suffer from burning painful scalp since March 2006. My scalp feels sunburnt at times mixed with a feeling of razor cuts like deep stinging. To date a pretty normal biopsy which suprised me since it was taken from the most painful part of my head. I also get painfull eyebrows to match my burning head, occasional itchy sore lashes and itchy nose hair. I have never developed any real bald patches and am loosing diffusely. I also don't feel well on top of this. Please feel free to contact me at any time i'd love to talk to anyone with this.

[briggscreek]

Hi there I also suffer from burning painful scalp since March 2006. My scalp feels sunburnt at times mixed with a feeling of razor cuts like deep stinging. To date a pretty normal biopsy which suprised me since it was taken from the most painful part of my head. I also get painfull eyebrows to match my burning head, occasional itchy sore lashes and itchy nose hair. I have never developed any real bald patches and am loosing diffusely. I also don't feel well on top of this. Please feel free to contact me at any time i'd love to talk to anyone with this.

That's just what my scalp feels like too, but so far I haven't had any eyebrow pain or anywhere else. I had a scalp biospy done earlier this week but I don't have the results back yet. I also don't have any bald patches, just lots of shedding. I also started taking iron pills and am really hoping that will make a difference.

[ouchy]

Brigs I am so very sorry your another victim to this problem. Unfortunately this seems to strike educated smart woman who are all on a quest to find answers. Seems nobody can give them so we have to draw our own conclusions.

My general feelings is if you experience pain on the level we seem to, that one can rule out androgenic alopecia. I don't quesiton that perhaps hormones are involved but it's not in my opinion hereditary baldness.

My intuition tells me an immune response to something the body is kicking out inflammation in the follicles. I did not show up with Alopecia Areata according to my derm she said no your biopsy should have shown it. I had the sample taken from the nape an area of mine that gets pink and feels razor cut. I am baffled at the fairly normal biopsy. I think our nerves have become irritated causing this shedding process in the follicle.

How are you feeling outside of the scalp?

By all means yes keep with the iron. When I take black strap molassses my lumpy fingernails get lovely and healthy again so... somehow again ferritin plays a role. I often wonder if my irritable stomach does not process vitamins as well so it's like a cascade effect

[ouchy]

Sorry I double posted.

[briggscreek]

Brigs I am so very sorry your another victim to this problem. Unfortunately this seems to strike educated smart woman who are all on a quest to find answers. Seems nobody can give them so we have to draw our own conclusions.

My general feelings is if you experience pain on the level we seem to, that one can rule out androgenic alopecia. I don't quesiton that perhaps hormones are involved but it's not in my opinion hereditary baldness.

My intuition tells me an immune response to something the body is kicking out inflammation in the follicles. I did not show up with Alopecia Areata according to my derm she said no your biopsy should have shown it. I had the sample taken from the nape an area of mine that gets pink and feels razor cut. I am baffled at the fairly normal biopsy. I think our nerves have become irritated causing this shedding process in the follicle.

How are you feeling outside of the scalp?

By all means yes keep with the iron. When I take black strap molassses my lumpy fingernails get lovely and healthy again so... somehow again ferritin plays a role. I often wonder if my irritable stomach does not process vitamins as well so it's like a cascade effect

Ugh, I just wrote a long reply and got an error message when I tried to submit. :mad: 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.

[ouchy]

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?

[briggscreek]

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. :(

[KathyLI]

Are you using Rogaine? My scalp is buring as well and I am praying it is from that.

[missmyhair09]

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

[ouchy]

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!

[missmyhair09]

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!!!!!!!!!!!!!!