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Hi Ladies, Sudden Hair Loss, Please Help!!!

Discussion in 'The Undiagnosed' started by Adity, May 12, 2018.

  1. Adity

    Adity New Member

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    Good afternoon ladies,

    Here's my story; any advice/suggestions/comments would be greatly appreciated.

    But first, I would like to thank everyone on this board for providing such a rich and informative platform. I have learned a lot. For example, at my first appointment with the dermatologist in March, I said that I wanted a full thyroid panel, not just TSH! So thanks ladies! I have to say I've been trolling this board since February, absorbing all the tips/information.

    I'm a 32 year old female. I have always had thick...really thick hair, to the point that hairdressers had to work super hard to make them look semi-presentable.

    But in October of 2017, I failed the July Bar exam by three points, and that sent me into a mild depression. I was stressed, and I could think only about how I had messed up. I also broke up with my boyfriend in November. In early November, for the first time in my life, I experienced acne. I have never had acne...not even when I was an adolescent! So this was odd, but I didn't make much out of it, as I was too preoccupied with my exam results and the break up. In December, I noticed my period had gotten a lot shorter and lighter. Instead of a 5-6 day menstruation, I only had my period for 2-4 days. I continued to ignore this.

    I had a rude awakening in February of 2018. In February, I began to shed quite heavily. I noticed this after doing my routine rosemary/mustardseed oil massage. this didn't really bother me, as I have always shed more than a normal daily shed is expected. But a few weeks in, and the shed continued. So I was getting a little worried. I upped my vitamins and drank lots and lots of water. Hair loss continued.

    These were long hairs with white bulbs, and they came out by the dozens, especially after showering.

    By March, it had gotten to the point that my hair was no longer waste length, and had become stragly.

    No problem, I thought, a nice haircut to the shoulder lengthe should fix the problem. It didn't.
    In mid March, the hair suddenly changed texture, and was still shedding.

    I panicked, and went to the dermatologist. The derm said it could be androgenic alopecia. But to experience hair loss this suddenly? Really? I had to practically beg her to actually examine my scalp...she did, and without any sympathy said well, it could be something systemic, or genetic...I am not sure...let's run some tests. So, she ran bloodwork, and the DHEA Sulfate came out to be 400, TSH at 2.09, vitamin D to be 40, and feritin was at 16.

    However, instead of focusing on that, she said that the ANA was 1/80...low positive, and pompously pronounced that, yes, it's lupus. But I told her I don't have a family history, no fatigue, no joint pain...but she said that ANA is 80% accurate in diagnosing lupus. Okay fine. I went to a rumatologist, who reran the test along with other auto-immune diseases. All these came back negative. The rumi did point out the high DHEA sulfate, and wondered aloud as to why the derm had not focused on the high DHEAs results. BACK TO SQUARE ONE.
    I have an appointment with her on Monday.

    In the mean time, my hair continues to thin out, and shed at the February rate. I feel like I have lost approx 60% of my hair density, but it's now merely owing to the shed, it's because the hair are thinning so rapidly...like disappearing overnight... Sorry, does that make sense? I feel like if the cause is not diagnosed soon, by September, I'll most likely go bald

    I always had a low hairline, and for the past 2 weeks, I have experienced recession there as well! My widow's peek, previously nice, long and pointy is almost gone. I feel like I was getting over one stresser, and this hair loss has sent me spiraling into another. It's gotten to the point that it has affected my self-confidence. I don't really socialize anymore. I cry every day, especially on wash days. My hair is my prettiest feature, and now it's jumping ship.

    I don't know if this is useful, but my body hair have also somewhat thinned out; of course I don't mind, it's the hair on my head I'm desperate to hang on to.

    I want to go to a real hair loss specialist for this problem. I live in NYC, and came across Dr. Michael Loren Reed. I suppose I will make an appointment with him. Although I don't have high expectations at this point. Is he any good?

    I so badly want to believe that it is possibly related to androgens, since I was quite stressed out. But would hair all over the body thin out this drastically, and continue to thin?

    Also, I feel like the hair all over my head has thinned out, continues to thin out, and disappear, especially around my hairline and nape area. Now, my shed hairs are week, and really fine. Some of these hairs have a tapered end... I just don't know what to do.

    Even if it is androgenic alopecia, I will dump my head into a nice big bucket of Rogaine, and that'll be that. But I want to find out the cause, so I can at least begin to address it.

    PS: I am currently massaging my hair with coconut, mustardseed, teatree, caster, and jajoba oil, and washing with Yarok salon shampoo and conditioner. I have never dyed my hair.

    What do you ladies think? I am so sorry for my long rambling post.
     
  2. RoxyT

    RoxyT New Member

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    Hi Adity. Whew--you have really been through a lot in the past six months. To be told you have lupus on top of everything....Argh! I can only imagine how stressful that was/is. I'm glad the rheum has ruled that out.

    I wish I had answers for you, but I don't. Our situations seem to have a similar pattern: Stressful events followed by never-before-experienced dermatological phenomena followed by substantial hair loss (from both head and body) and a decline in hair quality--all in a relatively short time-frame.

    One of my main stressors was work. Everyone expected me to perform miracles with few resources. Not meeting expectations is torture for me. Four years of that culminated in major depression and a psychiatric hospitalization in mid-2016. I went back to work and began going down hill again last summer and fall (2017). I cut back my hours from 60/70 per week to 20 in January 2018.

    Rather than acne, I had eight months of seborreah (greasy, inflammed, painful raised scaly areas) mostly on my scalp but some on my face, before I noticed much hair loss in November 2017. My healthy long hair had clearly been dropping out from all parts of my scalp. I just didn't notice until new, weaker hairs began emerging--and falling out when they were a just few millimeters long.

    In December and January, I had a sudden major shed. Clogged shower drain, hair everywhere, you know the deal.

    The hardest hit areas were bangs (gone in matter of 4 days), temples, above my ears, and in the back underneath layers on both sides of a less affected center section.

    In mid-January, I saw a well-respected doctor/researcher at George Washington University in DC. He said it was telogen effluvium (TE). Prescribed low-dose doxycycline (oracea) to lower inflammation. Together with 2% ketoconozole shampoo, that has kept the seborreah at bay. (I must remind myself that this was a huge relief as I had been to a slew of derms and tried countless steroids and other treatments that were totally ineffective.)

    By the time I saw the GW dermatologist the following month, the shedding of what I call "old growth" hair-- that is, the hair that remained from pre-seborreah-- had slowed to what seemed like a normal amount. But all of the new hairs, 1-5 mm long, were still dropping out by the hundreds each day.

    This is still the case. If I stand in a sun beam and shake my head, you can see plumes of these little hairs flying all over. It's bizarre and sometimes funny but mostly very sad.

    At that February visit, derm doctor said with TE, I shouldn't expect any progress (slowdown of loss) at that point. I told him to the contrary, it had seemed to slow down except for the very short hairs exiting. I'm not sure if he believed me. I showed him a swollen bulge on my scalp. He wondered aloud if I had alopecia planopilaris because my armpit hair was totally gone and pubic hair had started to thin. He biopsied it. Results are "indeterminate," meaning that pathologist says it may just be too early to tell. Good news was that they didn't see any scarring.

    Side vent: Why they didn't look for/test for other conditions at the same time boggles my mind. I told the doctor: "Please take as many slices as you might need to figure this out." He took exactly one. In his defense, he most likely wanted to cause as little unnecessary damage-- and rack up as few costs-- as possible.

    At April visit, I shiwed him significant thinning at the nape and hairline l the way around. He seemed a little caught off-guard. I told him some of the areaa were felt sore, sometimes burned or bruised. He said that unusual. He never spoke the words androgenic alopecia. Just said something like "we should give you a blocker in case testosterone is involved." He prescribed 5 mg of oral finasteride.

    I was surprised and my new primary care doctor was aghast that he prescribed a systemic medication intended for men without looking at my hormone levels (Come to think of it, he has never ordered labs or asked me about any results I might have on file. Is that typical I wonder.)

    My new primary is going to do thyroid panel, hormone panel, iron, ferritin, and others.

    If it is androgenic alopecia I have, it seems to me to be an atypical pattern. While I do have hairline recession, and some thinning on top, the baldest areas are on the back of my head, underneath, to the left and right of a denser strip of hair. Snd also my temples, area above that and above my ears.

    I lwish you the best and look forward to hearing about your exploratory process.
     
  3. sdp10112

    sdp10112 Member

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    I am in the same boat ladies!
    I began losing hair quickly, major shedding. I also lost my bangs the quickest. I have diffuse hair loss all over but mostly crown and hairline.

    I went to several dermatologists and none actually gave a diagnosis. I did have a biopsy and they said I might get 30% of my hair back. That would have been fine except this was a 2 year process to finally find someone who actually would prescribe me finasteride at 5mg. I had been on 200 mg of Spironolactone and 1 mg of finasteride and continued to have hair loss. I also added Rogaine to the mix and the hair shedding slowed. I did regain a bit of hair back on this program but not enough to go without the topper.

    I was also put on Thyroid and not sure if any of that helps at all or not. My hormones came back with 0 estrogen so they put me on an estradiol patch. Wondering now if I should add progesterone. Mixed opinions from doctors. Some say it is a must while other doctors say I do not need progesterone.

    My hair has definitely changed texture with all the meds I am not taking. It is completely wiry and frizzy. I can flat iron it or try and curl it, to no avail. I am also on several supplements.

    I am just sad that I went to at least 5 dermatologists, and it wasn't until the last one that he treated it more aggressively. The previous ones just prescribed a minimal amount of Spironolactone, gave me steroid creams and I did have the injections over several months which did absolutely no good.
     
  4. KayJane

    KayJane New Member

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    Your ferritin is really low. Have you considered taking iron supplements? I would definitely get a second opinion from a doctor who takes your abnormal lab results seriously. It seems like a lot of docs ignore abnormal labs if they are significantly elevated and since you are just outside of the normal range (65-395) this might be what happened
     
  5. KayJane

    KayJane New Member

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    Oops I meant to say if they are NOT significantly elevated
     

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