Scalp burning and hair loss

Discussion in 'Looking For Advice (my story)' started by briggscreek, Aug 1, 2009.

  1. briggscreek

    briggscreek New Member

    Updated with question! Scalp burning & hair loss

    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?
  2. VictoriaG

    VictoriaG New Member

    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.
  3. finaleofseem

    finaleofseem New Member

    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.
  4. Elissa

    Elissa New Member

    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*
  5. briggscreek

    briggscreek New Member

    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. :(
  6. VictoriaG

    VictoriaG New Member

    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.
  7. shyla

    shyla New Member

    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
  8. briggscreek

    briggscreek New Member

    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?
  9. VictoriaG

    VictoriaG New Member

    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!
  10. briggscreek

    briggscreek New Member

    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. :(
  11. VictoriaG

    VictoriaG New Member

    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.
  12. briggscreek

    briggscreek New Member

    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?
  13. VictoriaG

    VictoriaG New Member

    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).
  14. briggscreek

    briggscreek New Member

    Update in first post. :)
  15. VictoriaG

    VictoriaG New Member

    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!!!
  16. briggscreek

    briggscreek New Member

    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?
  17. VictoriaG

    VictoriaG New Member

    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!!!
  18. mythreeboys

    mythreeboys New Member

    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.
  19. briggscreek

    briggscreek New Member

    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.
  20. mythreeboys

    mythreeboys New Member

    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