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Old 02-04-2007, 06:50 PM   #1
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birchtree HB Userbirchtree HB User
If you have Burning Scalp Please Read

Hello,
I'm posting my story on this board because perhaps it will help one or two of you with burning scalp and severe hair loss.

Last April I started an extreme hair shed - a good 200 hairs a day after the shower. Two weeks after the hair shed started, my scalp started to BURN..it would start on the left, then travel to the right, stop, then start again. I would pace my office wishing the pain away...the pain was so bad at night it woke me up from a sound sleep. The night pain subsided after about a month, but I still had A LOT of pain and hair shed during the day.

I kept going to my primary care with the symptoms, and kept getting the brush off because hair loss is not taken seriously if one appears well. During my second visit in May, and after many tears, my doctor did DHEA, testosterone and thyroid tests and all came back "normal". As I had a thick head of hair and the loss wasn't showing yet, she would say things like "well, if you have a white shower, you probably just think you're seeing a lot more hair come out", etc.

I went to a Dermatologist....he had no idea what the scalp burning was about and said that my scalp looked healthy.

In June I went back a third time, again crying for help. My primary care finally decided that she needed to do a Thyroid Antibody test. She didn't include this test in the thyroid panel she had done back in May.

Three days later, I got a call from her. She said, "good for you for persisting...you have tested positive for Graves or Hashimoto's disease." Both are autoimmune disorders of the thyroid. Both cause scalp issues and severe hair loss, among other awful symptoms.

I had never given my thyroid a second thought - and here it was, making me ill, anxious, and causing me to lose my hair.

So..here we are 10 months later. After many tests, different medications and consultation with four different doctors, I now have no thyroid (it was removed because it may have been cancerous - I'm lucky, it wasn't) and am permanently on thyroid replacement meds. It took a while, but my hair loss subsided and the burning has stopped. I would say I'm at half volume hair-wise. It may or may not grow back, but I'm hopeful. I never thought the pain and hair loss would stop - but IT DID.

Thyroid issues may not be the answer for everyone, but if you are having scalp burning with hair loss, please consider asking your doctor for a complete thyroid test panel - TSH, T3, T4 and, especially, an antibody test for hashimotos and graves disease. I must stress that my TSH, T3 and T4 levels read "normal" when my thyroid was diseased - so please ask for the THYROID ANTIBODY TEST.

Best of luck to you all,
B

 
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Old 05-09-2007, 11:58 AM   #2
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Join Date: May 2007
Location: Sarasota, FL, USA
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Cheryl77 HB User
Re: If you have Burning Scalp Please Read

Hi, and thank you for your message. I have had all of the thyroid studies and do also have a burning scalp, so I called and requested the thyroid antibody test and will gladly keep paying to find the causative factor(s), as I'm quite sure that only when known, is there any hope of a cure.

Thank you for mentioning it. I'm adding you as a buddy. Wonder if you are still on the board. I'd like to be able to let you know the findings.

Thanks again
Cheryl

 
Old 05-09-2007, 09:59 PM   #3
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Join Date: Feb 2007
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Jacinda HB User
Re: If you have Burning Scalp Please Read

Birchtree, if you're still there could you please tell me how high your antibodies were? I also have hair loss and high thyroid antibodies, but TSH at 3.4 comes within 'normal' range where I live, where they use the old reference range. I also have very low energy and a few other symptoms but can't get treatment because of the TSH reading.

All the best to you.
Jacinda

 
Old 05-23-2007, 11:58 AM   #4
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Join Date: Dec 2006
Posts: 375
birchtree HB Userbirchtree HB User
Re: If you have Burning Scalp Please Read

Cheryl77 - I not usually in this board but I happened to be lurking around today.....did you have the antibody test? Hope you're okay....

Its a few months after I wrote the post and I am now having some hair/scalp issues again because I've had to lower my dose of thyroid med. I have my good days and bad days but certainly not as bad as before I was diagnosed.

Please post back and let us know what happened -

take care
B

 
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