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Has Anyone Read Their Biopsy Report?

Discussion in 'The Undiagnosed' started by LadyGodiva, Jul 18, 2011.

  1. LadyGodiva

    LadyGodiva Guest

    Every derm is so quick to want to put you on Rogaine, you'd think they were getting a cut of the profits!

    I'm still searching for answers, but some days, I can't even bear to look at myself in the mirror...it's so depressing to be faced with this new reality, every day. :dunno:
  2. fleur1979

    fleur1979 Experienced Member

    Nov 14, 2010
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    I know it is really depressing, but i would guess there needs to be a cause for it because it was so sudden with you also.

    I found out i had something wrong with my bone marrow that is probably caused by a tough virus. My doctor is saying now that it will take about 6 months for my body to fight it and that my hair loss is coming from the virus. She is saying that the hair is the last thing that will recover, but if the virus is causing it, it will absolutely pass. I really hope so. I told her i will be bald it this will continue for 6 more months and she was saying that it will be bad, but one day it will stop.

    So, really hope that the virus is causing it...

    And when i told her the derm told me it was Androgenetic Alopecia, she just laughed and said: now way, this is connected to the virus. Otherwise it is too much of a coincidence. She even told me that my thyroid was slightly higher because of the virus.

    I really hope she is right, but have to see it with my own eyes before i believe it.... hahhahah

    I am glad i didn't start the Rogaine yet...

    I really hope you are going to find the cause... I know what you are going through.... :(
  3. LadyGodiva

    LadyGodiva Guest

    Oh, my goodness fleur...so sorry to hear you have a bone marrow virus! However, the GOOD news is that someone actually found it so you can work towards getting better. I like the sounds of this doctor you're seeing...seems she's willing to look outside the box. I hope she truly is right about the cause of your hair loss and that it all gets sorted out.

    Me, I'm still searching for answers..like many of us on this forum. Something's gotta give... :)
  4. Marsen

    Marsen Guest

    Scarring alopecia is an inflammation in the follicles that causes them to die. It is caused by organisms, like Lichen Planopilaris.

    However, Androgenetic Alopecia can look like scarring alopecia because follicles eventually die too. The difference is Androgenetic Alopecia shouldn´t show inflammation.

    Your report says mild inflammation, so I´m not sure why Androgenetic Alopecia is the diagnosis. Maybe your scalp was irritated?
  5. LadyGodiva

    LadyGodiva Guest

    It's funny you just responded to this post. I was just in the shower thinking about my hair (what else) and, in particular, this biopsy report.

    You make a very good point, and I'm wondering about the answer myself.

    I was thinking last night how up until a year ago, I had so much hair, but 3 months after first being put on Synthroid (for mild hypo), it started to fall out like...I was going through chemo. Then, the itching began....it was itching like creepy/crawly/burning. Needless to say, when I got off Synthroid a few months after that - because hair loss/burning scalp symptoms persisted - the itching finally settled down 1-2 months later (at this point, Dec 2010), but not the hair loss.

    Then in January...I became a vegetarian, and a bad one at that. The majority of my calories/nutrition came from soy/starchy veggies (can we say anemic?). Then in February, I had pelvic/ovarian surgery...which led to high fever/infection and months of bed rest. Then I was bleeding for months amd months, to the point of hemorrhaging.

    And then in June, I went and got two pieces of my scalp ripped off.

    No wonder my head is angry!

    I'm still sadly anemic. I'm still coping with the complications of my surgery...lots of blood tests, imaging test, etc. I'm no longer a vegetarian, but I am a poor carnivore. I'm unable to sleep at nighy...and, I'm stressed beyond tolerance.

    Could all of the above have made my scalp angry and inflammed? And doesn't the rest of the report say it "could" be Androgenetic Alopecia, but it depends on the doctor's observations of my hair? Strangely enough, a month before the biopsy, the doctor was certain I was experiencing chronic TE due to all of the above. Then he gets the report, and now I have Androgenetic Alopecia? I still had the same head of hair as the last time he saw me!

    I am pi**ed that he said this biopsy would give me amswers, and in truth, I don't think it does.

    All that being said, I don't think I've been given the right diagnosis....or have I been?
  6. Marsen

    Marsen Guest

    Gosh, I don´t know, you have so much stuff going on at the same time...surgery, thyroid, diet, stress...it´s impossible to know, but no wonder your hair is falling out :(

    I have read on here many times that if you have a biopsy done after a TE, it will always come out as Androgenetic Alopecia, because the hairs that grow back after TE are always smaller and finer (intermediate), mimicking those of Androgenetic Alopecia.

    In your case, the only concerning element is the scarring alopecia, because that requires potent steroid medication to treat. I would get another biopsy in a couple of months, or see another specialist.

    Sorry you are going through this, I am in no better shape :(
  7. LadyGodiva

    LadyGodiva Guest

    Yes, plus my TE isn't over yet...so the biposy was a waste.

    I might do what you sugget and I am sorry about you, too. The silver lining here is...we can all talk to one another about it. Before finding this board, I was suffocating with my anxiety of hair loss...still am, but at least I can share with people who listen, like you. :grouphug:

    By the way, ask me how obsessed I am with checking out every woman's hair for hair loss? Never miss a passerby...
  8. Marsen

    Marsen Guest

    Ha ha, same :crazy:

    By the way, I really believe most women have the hair loss gene, but it´s another trigger that causes the hair loss. If you were to biopsy every women´s scalp, I suspect 80-90% would come back with Androgenetic Alopecia.

    Anyway, glad the board helps. For me, I´m positive it adds to my anxiety, but I can´t stop coming back :(
  9. LadyGodiva

    LadyGodiva Guest

    Yea, I never noticed before how many women - young and old - have thinning hair! Never knew that before.

    Yes, I try to take breaks from the board, because it's a hopeful/then hopeless thread and I'm already on my own roller coaster, so it can lead to anxiety. But I'd rather have it for the support. Of course, I'd rather have my hair back even more!
  10. LadyGodiva

    LadyGodiva Guest

    You know...I've been getting these red-purplish bums/pimples up and down my arms, some on my legs, my chest and neck...and I don't know why. And my scalp looks red and irritated though I treat it with UTMOST care.

    So I was searching online and came across Lichen Planopilaris...and recalled your post. Is it possible I have this? I read medications can trigger this, and my hair loss did get triggered by Synthroid. My scalp biopsy didn't even make a mention of LP, but maybe they weren't even considering it to look for it?

    What would I do next (I don't want another biopsy!)? Any input would be greatly appreciated!
  11. mshistory

    mshistory Guest

    Those reddish bumps could also be keratosis pilaris which is common and harmless (although not very attractive ;) ) I have it on my arms and legs. Just might be something else to look into.
  12. LadyGodiva

    LadyGodiva Guest

    Yes, except they came on (and have stayed on) since my hair loss began...were never there before. There's got to be some connection, I think.
  13. ChicBun

    ChicBun Guest


    Your biopsy says scarring alopecia. I think you need to see a specialist. Rashes on the rest of your body do go along with scarring alopecia.
  14. LadyGodiva

    LadyGodiva Guest

    And wHat do they all mean together...scarring, rashes, etc.? What kind of specialist do I see?
  15. ChicBun

    ChicBun Guest

    As far as I understand, the cause of scarring alopecia is unknown, it´s considered an auto-immune condition and treated with steroids. I meant a hair specialist, specialized in scarring alopecia. Perhaps your regular derm can refer you to one?

    Honestly, if your regular derm isn´t concerned with this diagnosis, then it´s probably nothing. It seems like biopsies can be wrong more often than right. I would not be concerned about it, but definitely discuss this with your doctor.
  16. LadyGodiva

    LadyGodiva Guest

    Thank you. I have an appt with a new derm. Not sure if he will help, but hopefully he's not any worse than the rest. But I could be wrong.

    The derm who did the biopsy said I had TE, or CTE die to excess stress. In fact, he didn't even think I needed a biopsy, but then went ahead and said, "Let's be sure"...but then changed his tune with the biopsy results and passed me to an endo for "further work up". That's how it's been all along...

    By the way, hair loss above the ears...is that part of Androgenetic Alopecia? In case you (or anyone else) knows.
  17. Lost

    Lost Guest

    I agree with chicbun find a derm with special interest in scarring alopecia,they can tell by looking at it I just saw a derm as part of a visit I had and he explaned that there is a distict look to the scalp and the hairloss itself with scarring I even said on line they say its not always visible,he said the scars are not always but the other symptoms are and thats all he deals with and treats. are you going soon to new derm? Is it just 1 pimple here and there or a whole area?
  18. LadyGodiva

    LadyGodiva Guest

    How would I find someone with that soecial interest? When you call any derm office here and ask about hair loss, they all say, "Of course he/she treats that" just to get a client in. Is there another way to find a specialist like you're saying?

    The rashes are on my arms, upper legs, chest, back, and neck. One might think they're pimples...but though I get the occassional breakout around certain times of the month...these come on and many have stayed on for weeks and months. And they came on around the same time as the hair loss.
  19. Lost

    Lost Guest

    I contacted (email) the alopecia foundation because at the time I did'nt know what I had Androgenetic Alopecia,Alopecia Areata , diffuse Alopecia Areata, and asked for a derms name in my area that deals with Alopecia Areata hairloss, they gave me his name and he's at a teaching hospital and they tend(I say that with caution)to be better at diagnosing hairloss, I said this on another thread they work as a team so when I went I saw 2 at a time I saw 4 altoghter each having different interest and 1 of them was for scarring he could not see any sign of that and they converse with a head derm and at the end they concluded that this is Androgenetic Alopecia brought on by a severe TE... so even on your own if there is a teaching hospital near you start there..and try to get in when the rash is there. On the other side though they had no answer for the eyebrow loss I have and did say it could be being caused by my hemolytic anemia but he really thought it just to be Androgenetic Alopecia...so thats that.. hope it helps you I wish you luck LG
  20. LadyGodiva

    LadyGodiva Guest

    Thanks so much, Lost. My derm is at a teaching hospital, but he's not on the research side. But I will take your advice and see whom else I can find.

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