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New to losing my hair.

Discussion in 'Newly Diagnosed Alopecians' started by bluedaughter, Apr 26, 2010.

  1. bluedaughter

    bluedaughter Guest

    I am quite new to this site and new to losing my hair. I have been to the doctor and she took quite a few blood tests. On my first visit she gave me steroid injections in my scalp. What does this do? Has anyone here ever had their hair completely grow back? I am going back to the doctor again this week to discuss the blood test results. I feel like starting the visit with her by asking what exactly do I have and what can be done about it. I now have a large spot on the top of my scalp and a couple of smaller ones down low on the back of my scalp. I have been reading a lot of the postings and am worried about the side effects of some of the treatments. I have read replies to posts that discuss biopsies. Will a biopsy give me one specific name regarding the type of hair loss I have? It also seems that a lot of the postings and replies state that some of the doctors are just not helpful at all in knowing what is happening with their patients. This thing I have is frightening and depressing and I wish I had someone to hold my hand through all of this.
     
  2. so-lost

    so-lost Guest

    Hi and welcome. I saw one of your other posts and while I'm not probably the best one to answer, I will since no one else has had the time yet- I'm sure they'll see you soon though!

    Androgenetic Alopecia- Androgenic Alopecia- female patterned loss (what I have- nothing but minoxidil or propecia can really be done & those don't work for a lot of people)
    Alopecia Areata- Alopecia Areata (sp?) loss in patches - I'm so sorry but from your description, it sounds like this is you. Be sure to have your doctors run all blood tests to make sure it isn't something else.
    AT- Alopecia Totalis - I think this is the version of Areata where you lose all hair on your head.
    Alopecia Universalis- Alopecia Universalis - I believe this is where you lose all hair on your body.

    Do some research under the Alopecia Areata, totalis, universalis topic (look on the board index). I know there's a lot of info on there for newbies.

    No matter what puts you there, many of us find ourselves in the same boat. Sorry you're here, sorry I'm here, but welcome. You'll find lots of info & support here.
     
  3. Welcome to the forum bluedaughter,

    Someone recently posted that they were originally told they had Diffuse Alopecia Areata, yet a recent biopsy then stated they had Telogen Effluvium.

    My advice would be.....request two different scalp biopsies, then tell your doctor you want them sent to different labs. Have the scalp/hair specimens taken from the same area, then have your doctor send them to two labs....to me that seems the best way to really find out what's going on. Or it's at least a step in the right direction.

    My 7 years of hair loss has proven that 1: biopsies aren't always going to give you a definitive answer and 2: most doctors simply don't know much about female hair loss.

    In this past weekend's US magazine, which is included with many US newspapers.....there was a ridiculous very short hair loss article, by a doctor. This article had absolutely nothing new to say re female hair loss, plus this doctor didn't even name the different types of alopecia and the many causes. Constantly reading articles filled with either nothing new or miss-information, is extremely frustrating.

    Another suggestion would be....do lots of your own online research before seeing doctors. Go to see your doctors armed with info!

    Derms are not the only doctors dealing with hair loss....endrocrinologists and rheumatologists are also very helpful because there might be other health issues causing female hair loss...besides the most common 'hormonal' or 'menopausal' hair loss diagnosis' most derms give their patients. Most doctors don't go beyond the most superficial of blood tests. Some won't even do a scalp biopsy. Others barely look at your scalp.

    You need to tell your doctor what blood tests your want.....you need to be informed because the information my derm was telling me in the beginning....was total miss-information. She was giving me scalp shots, before even getting the results of my scalp biopsy!

    Good Luck!
     
  4. dragonfly

    dragonfly Senior Member

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    I agree about going to the doctor armed with information. My derm never has done a biopsy, and handed me a prescription for Spironolactone and told me to use rogaine without even checking my hormone levels. I chose not to use either one. I have Androgenetic Alopecia and have learned more from this forum and my own research than from either of the doctor's I've gone to see. I am so sorry you are going through this as we all know how devastating, frustrating and frightening it is. Hopefully you will find some comfort here.
     
  5. Joann

    Joann Moderator

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    ((((((Bluedaughter)))))) we're all here to hold your hand. I'm sorry that you having to deal with hairloss but hope it's some comfort to you to know you're not alone as all of us here have some form of hairloss.

    Your patches are a classic symptom of Alopecia Areata. It's a very frustrating and unpredictable condition but hope and Alopecia Areata go hand in hand . For some, Alopecia Areata resolves itself in a year's time treatments or not.

    Unfortunately there is no one who will be able to predict your outcome with this condition. That's where the frustration comes in.

    At this time there is no "sure cure" The treatments available at this time,such as the shots you are getting, jumpstart regrowth in hope that the overactive immune system will settle down and hair can continue to grow. If it doesn't the new growth will fall out too.

    If you look at the picture of me below at 4 you can see my loss was extensive. My parents ended up shaving my head. Often when this happens so young you never have hair again but I beat the odds and my hair eventually grew back. It was never as it had been but at least I had hair. Having such a severe case is probably what determined my path with Alopecia Areata but so many people diagnosed with Alopecia Areata have a bout of it which resolves itself and that's it.

    Most people with Alopecia Areata are very healthy but some of us have other autoimmune conditions as well. That's why it's a good idea to have some bloodwork done to rule out any other existing conditions.

    I don't want you to stress & worry ahead of time. Try to take it a day at a time. Not easy to do I know but from my own experience projecting ahead of myself caused me alot of anguish and grief & I was powerless over the outcome.

    Finding support and sharing with others who understood totally made a day and night difference in how I arrived at peace and acceptance of a condition I fought against almost my entire life.

    Please keep in touch. We're here for you.

    Hugs,
    Joann
     
  6. littlenewo

    littlenewo Guest

    I am so glad that Joanne saw your post! I was going to tell you immediatly to look her posts up :) Alopecia Areata is unpredictable, but those of us with are lucky that our follicles are always able to still produce hair. Currently I am going through getting regrowth and still finding spots. These boards have been my support line for dealing with my hairloss, and hope you find the same :). There us a ton of info under the Alopecia Areata community threads, I would start there. I really do find though that all of threads offer encouragement and great friends.
    As far as the Dr. goes, have him check your thyroid levels if you can. My Graves was triggered at the same time as my Alopecia Areata. Also, if you have any other autoimmune disorders, you have a highr chanc of getting more which is what Alopecia Areata is. For instance I have eczema, Graves and Alopecia Areata. So I hope that is a little info that will help, and welcome to heralopecia! If you ever need to talk, PM me :)
     
  7. I can't believe your doctor started treating you (with steroids!!!) without diagnosing you first! I don't know how you feel about your doctor, but that sounds like bad treatment to me. Make sure you're going to the specialist in hair loss--a dermatologist. I have alopecia areata (which it sounds like you may as well), except mine is the rare diffuse version--I have hairloss all over my head, not just in patches. It only took 2 doctor's visits to diagnose it. First, my doctor did a blood test to rule out conditions of the thyroid, vitamin deficiency, etc. That revealed nothing so she did a biopsy. A biopsy should conclusively diagnose alopecia of any kind. It showed I have alopecia areata with some additional androgenic alopecia. Only after I was diagnosed did I start treatment with minoxidil (Rogaine) and Olux-e (a topical steroid). I was just diagnosed and began treatment or I'd tell you if the treatment was effective.

    My doctor has been clear and up front with me about everything that was going on, but I have also been very proactive about gathering information, getting copies of all of my test results and test orders. I work in the medical field, so it's a little easier for me to interpret the results, but having this information would be very handy, especially if you wanted to go elsewhere for a second opinion.

    Don't let doctors do anything without understanding what it is and why they are doing it! There are bad doctors out there that don't have a clue about what they are doing.
     
  8. Hi notlikingthis,

    I assume you were answering my post? :)

    Yes, my derm started the steroid shots, Kenalog, I think? BEFORE getting test results. I think that was because my initial area of shedding looked a bit like an Alopecia Areata spot, it was a little smaller than a pencil eraser. Oddly enough, that first area of loss is now filled in!

    I've been slowly losing my hair for 7 years. My temples and side areas beyond my ears...are looking worse lately. This does NOT seem typical of Androgenetic Alopecia....especially the loss behind the ears extending to the sides. Also one entire side of hair is much thinner.

    My biopsy results have run the gamut from Androgenetic Alopecia, Seb Derm, Folliculitis, CTE and the last was supposedly Diffuse Alopecia Areata. My derm said outright, "It doesn't look like DAA, but you can have 2 types of hair loss simultaneously." Then again, she is not an expert on hair loss, so she's going by the pathologist's results. She mostly deals with skin disorders and skin cancers.

    I honestly don't think any doctor is a hair loss expert...there is simply not enough research in this area...and most women with hair loss have other illnesses going on...so one treatment simply can not work for all women. Add trying to balance hormones etc into that mix.....and well....we'd need to be monitored while staying in a hospital for a month or so....to get things right and you know that is NOT going to happen, lol Not with the state of healthcare in the US. Most healthcare plans would NOT allow this, because they don't see hair loss as "serious".

    Most doctors, in general, are very dismissive about getting to the bottom of our hair loss or scalp ailments. The big problem is..hair loss is NOT important to the medical community. They treat our loss as a solely cosmetic problem. I knew it would be an uphill battle when I approached my PCP in the beginning of my hair loss, she initially told me, "Get a wig!", this was before she ran ANY blood tests!

    You can see my confusion and frustration re the biopsies...if a biopsy can't determine what type of hair loss I have...then what's the next step...??? There was also a debate here years ago...re scalp biopsies...a lot of women didn't think they were definitive.

    I've also had a TON of blood tests done over the past 7 years. My Estrogen and Estradiol were low, I'm in menopause. I've managed to get my Ferrtin up. Right now, I'm working on getting my low Vit D up. A few months ago, I had 28 blood tests. I think at my end....I'm doing EVERYTHING I can to find out what's going on. Doctors need to think outside the box...not base their diagnosis solely on test results.

    I've seen a few derms( I go back to my old derm because she is the only doctor who is willing to run the more advanced blood tests), an endocrinologist and a rheumatologist. My derm has given me a referral to see a neurologist for the burning scalp areas! Frankly, I'm tired of shelling out money which would be better spent on some beautiful supplemental hair.

    Yes, I've also tried a ton of different topicals to relieve my scalp symptoms: Ketaconzocale shampoo(prescription Nizoral), Clobex (three different types: shampoo, ointment and lotion...it made MORE hair fall out), Olux foam, Texacort drops....way too many more to list. Basically I'm EXHAUSTED from all this. THEN not getting a diagnosis on top of this...well, it's extremely frustrating!

    I have NO patches, just diffuse loss, with my front hairline and back crown being the worst areas of loss, is that typical of DAA? I also have nape loss and my hair there feels like a baby's...super thin and very silky. BUT the next area of have above that looks and feels normal.
    :dunno:

    Asking my derm these questions is completely futile...the other derms I saw were also completely clueless. Perhaps I have a combo of DAA and Androgenetic Alopecia? Chronic TE? My understanding is that true Androgenetic Alopecia doesn't cause a burning scalp. A few posters here have stated that through seeing top derms, that burning hair loss usually point to an auto immune reason. I also have allergies.

    My scalp burns, but only in certain areas. I get small burning scabs and hive-like lumps, but only on a few areas at a time. The sensations are never throughout the entire scalp.

    When I initially started posting here....many women insisted that women with hair loss should also see an endrocrinologist, not just a derm...because many derms simply don't know all that much about hair loss.

    Well, I saw an endo, another waste of time and money....why? Because she said all my ranges were "normal for your age"...yet later on, I found out she read the wrong ranges! My derm went over those test results again, she also gave me all the printouts from every test I've ever had including the biopsies....the blood tests WERE "within range and normal".

    Unfortunately, the top endo doctor some women here recommended in Manhattan, uses a 'drug cocktail' of .....HRT, Spironolactone, Propecia and Rogaine. HOW can they know what's working?

    Rogaine didn't work for me, I refuse to take an HRT meds or Propecia and Spironolactone, which I'm still taking, doesn't seem to be making a difference re my sheds...but it IS helping my high blood pressure. THEN just recently.....someone just posted here that a new FDA study stated Spironolactone causes liver cancer.
    :shock:

    At this point, I don't want to risk cancer or some other serious illness, to save my hair. I'm basically heading, no pun intended....towards a Topper.

    Right now, I'd be happy to simply relieve my scalp issues or get an actual diagnosis as to what type of hair loss I have. How can anyone start any treatment...if they have no idea what type of hair loss they have?

    There are a handful of success stories here, mostly from Rogaine.

    Thanks for your input.

    :)
     
  9. bluedaughter

    bluedaughter Guest

    The Dcoctor did treat me with steriods in the scalp. Yes she did. What did I know?
     
  10. I guess my reply works for you both :)

    Ms_ Understood, your hair loss pattern sounds similar to mine, and I haven't found anyone else who has a similar pattern. I have DAA and Androgenetic Alopecia. I have no patches, but I do have diffuse hair loss over my entire scalp with slightly more loss in the front, along the part, and in the back.

    Mine was diagnosed with a biopsy. My dermatologist told me they had just switched labs--they stopped contracting with Labcorp because their test results weren't always reliable. I don't know if Labcorp is up in your area or not, but maybe the lab they use is unreliable.
     
  11. curlylocks

    curlylocks Guest

    Bluedaughter, Sometimes Alopecia Areata is pretty obvious to doctors. No biopsy is needed. Based on your description, it sounds like this is what you have and the shots are exactly how it is treated. I think the only mistake this doctor made, was not informing you of his diagnosis.
     
  12. bluedaughter

    bluedaughter Guest

    Thank you curlylocks. My hair loss seemed to happen so suddenly. I just noticed it this past February. When I did go to the doctor, she mentioned Alopecia immediately. She took many blood tests. Something seems to be going on with my Thyroid and some other levels of blood stuff I know nothing about now but they seem to be either high and low and she is concerned. Her staff has called me a few times at my work to have me come back in for a couple more tests but I just haven't yet. It has only been about three weeks that I last was in but I need to schedule to take the time I know. I have a big work meeting in Colorado next week so I will be explaining all over again about what is happening to me. I never knew so many people cared about me until this obvious thing has developed. Since I buzzed my hair off, what was left of it anyway, I have been very determined in telling everyone that "no I am not having Chemotherapy", then I go on to explain what is happening. I would like this to go away but I am dealing with it just fine, I think.

    Thank you all.

    Bluedaughter
     

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