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3 Derms In And Still Confused... Long, Sorry!

Discussion in 'The Undiagnosed' started by Frustrated, Feb 15, 2018.

  1. Frustrated

    Frustrated New Member

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    Im new here and have been reading through all the posts hoping someone has had the same thing and can help me out! I started noticing lots of hair loss back in oct 17, tons coming out when I combed through or washed my hair. I saw the first dermatologist and she said TE, take some biotin and wait it out. When I went back two weeks later for a skin check I had this massive flaking painful area under the front of my hairline and a couple of red bumps on another area of my hair. She said dandruff, prescribed loprox once a week and sent me on my way. The loprox seemed to make my scalp super shiny and didn't stop the pain, so I called back in November and she blew me off.... Had my GP check bloodwork and vitamin d was low but that's about it.
    Got through the holidays and saw a different derm beginning of January. She also said TE, and gave me DHS Zinc shampoo 3x a week and said take more biotin. After two weeks I started to lose curly hair - and my hair is straight - and the top of my hair seemed to get overall thinner than before. At this point the pain in that one front section where the flaking started was very painful and thinning. When I followed up with her at the three week mark and I told her I lost lots of hair with the zinc shampoo and there was this pain, she said I didn't lose more hair, pointed to three growing hairs and said the only treatment for scalp pain was antidepressants.... Sigh.
    Went to a third derm, she did tons of bloodwork and said that area was inflamed, switched me to a ketocozonale, salycic acid and zinc combo shampoo and also gave me clobestol spray. The spray was ehn, but within four hours after using the combo shampoo the front scalp pain was gone! Just gone. I couldn't believe it! So that area and my front scalp region flaked and peeled a lot before I went back for my bloodwork results. -- note I did lose eyebrow hair. I could actually see what happened to those and they would get an itchy bump in the follicle and then the hair would fall out in a few days.
    My bloodwork came back mostly good - vitamin d low at 23 and ferritin only at 10.9ng. Hormones came back in range.
    This derm wanted to put me on propecia and rogaine. I'm not sure why - if the shampoo took the pain away doesn't that indicate that perhaps it was some sort of infection? In the meantime, front of my hairline and bangs are still very thin and seem thinner, though tha massive hair shedding seemed to slow. I just started taking vitamin d, iron and nutrafol. Turned down hormones as well, not sure why I should take those if in range.
    I'm 43, have five adult kids, and never lost hair like this in my life. My concern is that I picked up a fungal infection of some sort that's been running rampant or perhaps it's autoimmune? I just don't know. If you've read this far,, mad props to you! Anyone have any ideas? Doctors don't seem to be helping!
     
  2. Lolli

    Lolli New Member

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    The inflamed follicles and flaking at the hairline sounds like the symptoms of FFA-Frontal Fibrosing Alopecia. No local dermatologist knew what it was. I discovered it by searching the internet and now drive 6 hours to a doctor who is familiar with it to get treatment. It is very uncommon and results in hair loss in a line across the frontal area of our hair. You might look for pictures on the internet to see if it looks like FFA.
     
  3. Frustrated

    Frustrated New Member

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    Thanks for the reply! I did think it could be ffa after seeing it online but I've had diffuse thinning not just at the hairline, my part and everything got thinner too. I also see some areas at the top where the scalp looks shinier and my scalp is so dry!
    I am wondering now if I've got more than one thing going on. I researched the keto shampoo and found nothing about it alleviating pain either.
    Very strange.
     

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