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Has Anyone Read Their Biopsy Report?

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

  1. LadyGodiva

    LadyGodiva Guest

    I finally have my scalp biopsy report. I'm going to share it here word for word, because I'm not sure if it's giving a diagnosis or saying this "could" be a diagnosis?

    Please share your insights/experiences:

    "Multiple sections were obtained from all levels of the punch biopsy. The distribution of hair follicles is somewhat even and without suggestion of severe miniaturization. Most follicular units contain two to five follicles. There are perifollicular fibrosis and mild perifollicular lymphocytic inflammation. Vellus and indeterminate follicles do not appear to outnumber the terminal follicles. No significant increase in telogen hairs are identified. No peribulbar infiltrates, follicular distortion, or pigment casts are appreciated.

    Diagnosis: Mild inflammation, scarring alopecia - Of the clinical differential diagnosis under consideration, androgenetic alopecia is possible. Both telogen effluvium and alopecia areata usually have a shift toward telogen hairs, which are not identified in this biopsy. Additional features of alopecia areata are not observed. Clinical correlation (physician's exam) is recommended."

    So...Androgenetic Alopecia is possible, but they don't know that it IS Androgenetic Alopecia? And don't they realize that I've had crazy TE-like hair loss for one YEAR...and it's somewhat subsiding (or I have a lot less hair than from a year ago, which I do), so maybe that's why it's not showing up as TE anymore? How about CTE? They don't even mention that.

    What kind of diagnosis is this? :lost:

    And p.s. What is scarring alopecia? I'm wondering if the doctor messed up my first punch biopsy sample, because my scalp is as clear as glass...not a single blemish on there, BUT...the sample the report says they have is, "A1-punch with lesion" HUH? There is no lesion anywhere on my head - and believe me, I have looked at every inch and taken pictures, too! And "A2-additional punch".

    What the heck?? :freaked:
  2. Din

    Din Established Member

    Apr 10, 2011
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    Hi Ladygodiva,

    I don't know much about the biopsy results but wanted to say that sometimes with scarring alopecia, you may have no symptoms at all... Scalp would look totally fine, but the scarring is underneath. If It is scarring, I think they give you medication for that, so it doesn't kill the follicle.

    How much do you shed daily now??

    And how can they say you have Androgenetic Alopecia, if the biopsy did not show much miniaturization, and veluss hairs ?

    I dont believe much in biopsies, mine said no Te or Cte, no Androgenetic Alopecia, and completely normal, yet I am still shedding?? Just does not make sense.
    But the fact that your shed went down is a good sign,
  3. LadyGodiva

    LadyGodiva Guest

    Hi Din, thanks for responding!

    What kind of medication do they prescribe for scarring alopecia? Because my derm said nothing and gave me nothing.
    I've stopped counting exactly, because my anxiety would go through the roof and I couldn't function emotionally...but just by eyeballing it, I either am losing around 175+ hairs/day on a good day (and more during my menstrual cycle).
    Well, that's my question exactly...I don't get it. What kind of diagnosis have they provided?
    I did read somewhere that you can request your slides from the biopsy and have a second person read it. I may even do that myself, but not right away...
    Thanks, it makes me a bit hopeful and there are days when I think I've reached the end of whatever "this" is...because the shed seems somewhat better than most days; and then it turns around and gets worse a few days later. Plus, the hair is not growing in the areas where the hair falls out...kind of like in TE hair loss, like in this photo which is NOT of me, but it's a medical photo of TE hair loss that looks similar to mine (I can't get my camera to show mine as well as this). Sometimes, I wonder if it's CTE that I have..?

    By the way, it's not that I'm in "denial" about my diagnosis, and don't want to accept a diagnosis of Androgenetic Alopecia...it's just that what the derm said to me on the phone ("on the scale, it's most consistent with Androgenetic Alopecia"), but that my report doesn't say that exactly ("possible Androgenetic Alopecia"), and that the pattern of loss is drastic and not progressive like Androgenetic Alopecia is supposed to be. And mine began with Synthroid, went into serious TE and is only barely tapering off a year later (which is why I wonder if it's CTE). I don't know; something about it all doesn't seem right.

    My Endo and Derm consulted, and the endo prescribed Aldactone (brand name for Spironolactone)...but I'm not taking anything yet because I want to really figure out what's going on here. My taking meds is how my hair shed began in the first place (Synthroid, which I haven't been on in 5 months). My thyroid is also going up/down but stays within the "normal" range...but goes from 1 to 5 to 3 to 1 to 4...I don't know. :dunno:
  4. Lost

    Lost Guest

    your report does say physicians exam needed so maybe the mild scarring is just from old follicles that hair has been gone from for awhile so Dr. thought more like Androgenetic Alopecia then scarring alopecia? just a thought
  5. as324.

    as324. Guest

    You have scalp inflammation meaning something, most likely your diet, is causing whole bodily inflammation. What do you normally eat?
  6. mshistory

    mshistory Guest

    I have read many stories of hair loss with Synthroid (of course, I've read/heard the reverse, too - hair loss ended with Synthroid and stabilization of thyroid problems). Why did you stop taking Synthroid? Are you on another thyroid medication? Are all of your thyroid hormone levels normal? Have you had any other bloodwork to check for any other antibodies?

    I have not had a scalp biopsy, but I know I have Androgenetic Alopecia and I'm sure if I were to have a biopsy it would show inflammation - because I have chronic systemic inflammation due to an autoimmune disease (which may be exacerbating my hair loss). So that's why I was wondering if you have had any other antibody bloodwork done. Some of these autoimmune diseases can mimic thyroid problems, and many have overlapping symptoms including hair loss, fatigue and joint pain.

    Sorry you had to go through such a horrible experience with your biopsy to end up with no answers. :(
  7. mythreeboys

    mythreeboys Guest

  8. as324.

    as324. Guest

    heyy from what ive read the main sources of inflammation could be from carbs (bread grains etc even rice) sugar or dairy

    you say youve cut out almost all carbs/sugar? what remaining sugar/refined carb/grains are you eating? what about potatoes?
  9. fleur1979

    fleur1979 Experienced Member

    Nov 14, 2010
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    Hi LadyGodiva,

    My hair loss looks simular to yours ecept i have little regrowth hair showing.

    Is it not TE hair loss if there is regrowth at the same time as the shedding??

    I get why you are so upset after that horrible biobsy and the outcome.. :(

    Good luck
  10. LadyGodiva

    LadyGodiva Guest

    Hi everyone. I firstly want to thank you ALL for taking the time to respond to my post. You don't know how comforting it is to wake up this morning and find all these kind and thoughtful responses. As many of you may already experience, hair loss issues are not understood by those who aren't experiencing it, and I've taken to finally saying very little about mine to those around me because I feel they think I'm making too much of it. So I'm really glad to be able to share here and have you be so compassionate in your responses.

  11. LadyGodiva

    LadyGodiva Guest

    My responses to everyone below:
    To be honest, the derm never has seen me since he did the biopsy; his nurse removed the stitches. The "lesions," according to the biopsy report, are apparently part of the samples of my scalp that the lab received. Meanwhile, my scalp is clear to the naked eye...so I don't know.

    I eat things I shouldn't, I think. Sugars, carb, and dairy. I'm already allergic to dairy but still eat it often enough that I break out (not smart); and I've lately been having a reaction to sugary stuff. It's actually funny that you should bring this up...I was only yesterday researching "candida overgrowth" because lately I've noticed a severe reaction (big, red blotches/hives) on my skin when I eat high carb/sugary stuff. Sugar is esp. causing a bad reaction, including sweating..and I'm not sure why (I've tested negative for diabetes). So then I also noticed that when I eat sugary/carby stuff, my scalp itches like M.A.D.! There has to be a connection.

    I tried the candida overgrowth "self test" (you spit in a glass of water first thing in the morning BEFORE you put anything in your mouth, then watch to see if stringy/cloudy stuff keeps floating in the water [positive for candida] or not). Well, mine was cloudy as all HELL. It was disgusting, to be honest. So I'm exploring that option, because if my candida overgrowth is systemic, it could cause a slew of problems. Plus, I've had little pimples forming all up/down my arms and legs - and they itch really badly - and right where they itch, I'm losing hair on those body parts as well. Weird.. :shock:

    Hi there. I stopped taking Synthroid because it's what precipitated my hair loss; prior to it, I had a lot of hair and it wasn't going anywhere. Also, my TSH levels were only mildly elevated, and we only tried Synthroid because we (mostly, me) were desperate for a solution to my unexplained excessive menstrual bleeding that wouldn't stop. But once my TSH went down to 1.01, the hair loss was out of control. My doctor recommended I stick it out and my body would adjust, but 3 months later, my hair was falling out like water...frightening. So I discussed it with her and weaned myself off. Currently, I'm taking a teaspoon full of extra virgin, organic coconut oil (I recommend Nutiva)...and strangely enough...before taking the oil on a daily basis, my TSH had climbed up to near 5; my last blood work which was done last week, however, shows my TSH at 1.12...and the previous month, it was 2.24. Coconut oil, as a daily supplement, is supposed to be thyroid stimulating. If I don't take a teaspoonful every morning, I drag through my day.

    As for systemic inflammation, I've also just been tested for lupus, because my Endo said that scalp inflammation could be caused by that...so I'm waiting for the results, but I'm guessing that will be a negative as well. I've had other antibodies test and was told they were negative...so I don't know what these doctors are doing. What is your autoimmune issues, if you don't mind me asking...?

    Thank you for your kindness; very much appreciated. My biopsy site is now "healing" but it itches like MAD and I can't even scratch it red, because my scalp is already in pain. FYI, I have read that if one has Androgenetic Alopecia or an excess of DHT in the scalp, that can cause scalp redness/inflammation.

    Well, that's a good question, fleur, and I wonder the same thing about TE...or at this point, CTE. But the doctors are pushing me to get on Aldactone/Spironolactone and I'm holding off because they haven't figured out the source of my hair loss yet (in my pov), so I don't want to exacerbate my hair loss and go into another bout of TE because of YET another medication. Damn doctors!

    Thanks everyone...please keep sharing! :bravo:
  12. mshistory

    mshistory Guest

    I have Sjogren's Syndrome, which can cause hair loss in some people. It's not as common as in Lupus, but occurs in some people with a lot of systemic inflammation w/their Sjogren's (like me). I haven't had Lupus ruled out yet because my lab screwed up and didn't run those tests when they were supposed to! But my ANA maxed out, SS-A maxed out, my rheumatoid factor is extremely elevated, and my SED rate is elevated. I'm on Plaquenil now to try to slow down the progression of my Sjogren's (which is like a kissing cousin of Lupus and they're pretty much treated the same way - Plaquenil to start off with, which is what I'm on...and can also cause hair loss in some people! Ack!)

    I hope your Lupus tests come back negative!
  13. LadyGodiva

    LadyGodiva Guest

    Oh, I have read about Sjogren's...and those damned medications that all cause hair loss...what's that about? Is the treatment at least working to decrease symptoms?

    Thanks for the positive cheer about my lupus results. I've only been trying to get my results for TWO days now and the Endo office keeps not calling me back. How disorganized is that??

    EDITED TO ADD: Just tracked down the Endo nurse and here are my results of some things they recently tested:

    TSH - 1.12 (Range: 0.3-3.0)
    Ferritin - 38 (Range: 5-148)
    Prolactin - 12.9 (Range: 1.9-25)
    ANA/Lupus - Less than 40; normal
    WBC - 6.3 (Range: 4.3-11)
    RBC - 6.24 (Range: 4.2-5.5) <--Is mine higher? :shock:
    Hemoglobin - 12.1 (Range: 12.0-16.0)
    Vitamin D - 23 (Range: 30-100) <--Yes, my Vit D keeps dropping when I don't take supplements.

    So it's NEGATIVE for lupus, and they don't know what the hell else is going on. Sheeeeesh. :shakehead:
  14. hhickm21

    hhickm21 Guest

    You sound like me.... I've yet to find the source of my hair loss - it's diffuse (everywhere, including all over the back of my head, above the neck, ears, etc) and the first biopsy I did came back saying that I had more hairs in telogen/catagen... not helpful... I lose well over 100 a day. And my derm said that Spironolactone/bcp helped one of her patients with diffuse loss.. I'm just scared to go on meds and make it worse.

    But I'm almost to the point where I feel like I'm shedding profusely anyways. If it gets worse on meds, it was prob not going to get better without the meds either.
  15. LadyGodiva

    LadyGodiva Guest

    I know what you mean, but actually you could - if you have a bad reaction to the meds - start another bout of TE on top of the TE/CTE and then there won't be much you'll be able to do.

    Have you ever tried Saw Palmetto? I'm considering it, over Aldactone/Spironolactone.
  16. mshistory

    mshistory Guest

    Yay for the negative results on Lupus! I know it's frustrating to not be able to pinpoint the cause of your hair loss, but that at least must be a relief!

    The Plaquenil is a slow-acting treatment and it usually takes several months to feel the benefits (I just started last month). Most people notice a decrease in their joint pain and fatigue (both of which I have so I'm hoping that will be the case with me!) but it usually doesn't help with the dry mouth/eyes. It will hopefully slow down the progression of the disease though, and (again, hopefully) prevent major complications that can come with Sjogren's involving the lungs, kidneys, liver, central nervous system, vasculitis, etc. The hair loss side effect of Plaquenil doesn't seem to be terribly common, but I keep thinking that would be my luck...going through all this Spironolactone/Rogaine treatment to try to keep my hair just to lose it anyway from the one drug I absolutely need and can't go off of!
  17. LadyGodiva

    LadyGodiva Guest

    Yes, definitely it is. Like I tell my family, it's not that I want to have a disease...but I know something is not right for my hair to fall out as it's doing, so I at least want some answers...which might mean I have a disease. Vicious circle.
    I absolutely hear you on this. I'm often the person who experiences the rare side effects of things; you know, the person who is "less than 1% of patients showed rare side effects of hair loss, rashes, palpitations"... <-- I'm always that person! So when a doctor says, "Let's put you on..." whatever meds, I'm anxious about what side effects my poor body has to go through with now.

    I hope the medication works very well for you and hope that it won't affect your hair negatively at all! If you do get on Spironolactone, let me know how it works for you as well. Good luck! :)
  18. mshistory

    mshistory Guest

    mythreeboys, the majority of people with Sjogren's syndrome will have a positive ANA, positive SS-A or SS-B (or both) and an elevated rheumatoid factor. If you suspect you might have Sjogren's, I would recommend seeing a rheumatologist who can run all the necessary bloodwork. Also, write down every medical symptom you can think of - even if you don't think it's related to Sjogren's because sometimes, things we don't think are connected actually are.

    Some people with Sjogren's are sero-negative, meaning that for some reason, these antibodies just don't show up in their bloodwork. If that's the case, lip biopsies are usually performed (two to three small salivary glands are removed to check for signs of autoimmune destruction). There is also a lacrimal test that opthamologists perform to check for severe dry eye, but that won't confirm a diagnosis of Sjogren's Syndrome (but if you're suffering from severe dry eye, Restasis may help regardless of the cause).

    Thanks for sharing your experience with Plaquenil - I'm hoping for the best!
  19. fleur1979

    fleur1979 Experienced Member

    Nov 14, 2010
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    Hi LadyGodiva,

    I think it is good that you are trying to figure out what exactly caused this before going on rogaine or something.
    My derm also wanted me to go on Rogaine, but i need to know first what is going on in my body, before using any of those product.

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