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Discussion in 'The Undiagnosed' started by hairscared, Jun 28, 2009.

  1. hairscared

    hairscared Experienced Member

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    This is what I found when I looked at my scalp 2 days ago..
    What do you think?
    I called my doctor who has not seen me but he called in lab work when i told him I have lost some hair.
    I had blood work for thyroid ( I have been on synthroid for years, I was just tested 3 weeks ago and everything was fine) he also ordered a CBC
    be done. No results yet, this was on last Friday, so maybe on Monday he will call.
    I am sure it will all come back fine. In fact if I know my doctor he'll call and be all gay happy and say" congratulations, you blood work is all fine"

    I am 55 years old, and also I am in a lot of pain on my scalp- all over pain, burning and can not even touch my head and it hurts to run a comb through it.
    Please help me, just some direction or anything...I would like to get what I have read about on here a "topper" I need something to cover up the loss. My hubby thinks I am going to kill myself, I can't stop crying and I won't go out.
     

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  2. Hi Hairscared,

    Firstly, welcome - am happy you found this place as there are so many great women here who can help you. Secondly - you do not look 55 from what I can tell - wow!

    Its really hard to tell from your pic without knowing your history - how quickly has this happened? Have you suddenly started losing hair very quickly? If so, you might be having a TE (reversible hairloss) and your loss does look quite diffuse which is characteristic of that. But I cant tell if any of those patches are very smooth - are they? That could point to Alopecia Areata. but it doesnt jump out at me as that from looking at this pic alone.

    Alternatively, has your hair been thinning slowly for years? If so, and if you are thinning particularly up top and your part is widening, it could point more to Androgenetic Alopecia - genetic hairloss.

    The scalp burning etc could suggest a problem with the follicles particularly if your scalp is inflamed and red.

    Def see what your doctor says, your results might be able to tell something. Really it is hard to tell from the pic and everyone is different but I hope my rambling is vaguely helpful!

    I think you could go with a topper if you want to cover it up. Where are you from? If you are in the states you might want to get in touch with Flora who a lot of the girls are using, but there are plenty of other alternatives for you too.

    You aren't alone in how you feel, so many of us have spent days crying and not wanting to go out, but you will get through it and you learn to cope with it. I am 24 and hve had hairloss almost 2 years, was recently diagnosed with Androgenetic Alopecia. It's still a horrid thing to deal with but I am coping so much better than a year ago.

    ((hugs))
     
  3. kimm

    kimm Guest

    The thyroid is a good lead. I know that Synthroid can sometimes cause hairloss. One option would be looking into Armour if that ends up being the culprit.

    Have you had a lot of shedding recently?

    Has this been slowly happening or did it suddenly happen?

    If you've been shedding a lot, look back about 2-4 months ago. Did anything happen? Medication addition/subtraction/switch, extreme stress either physically or mentally? Any hormone fluxes? Did you stop or start hrt?

    We probably can't diagnose, but if you can give us more clues into what's been going on health wise etc. We might be able to help direct you to questions to ask your doctor, tests to request, etc.

    Hang in there. I know how hard this is.

    If you look around the hair replacement section you'll see that there are a couple providers that members on here have been having a lot of luck with, or they can give you tips for what to look for if you decide to search locally. I will say that hair additions have given a lot of women on here their lives back. So even if it's a temporary fix while you solve this problem, it might be worth looking into so that you at least feel good about getting out in public and not letting life stop because of this.

    Trust me I know about letting life stop. Still struggle with it. There's a lot of inspiration on here to see that you don't have to go that route.

    Please don't think that life has to end over this. It's extremely painful and hard, but please keep looking at the stories of women who are continuing on despite this and you'll see that happiness is still possible, even if it doesn't seem like it right now.

    ((hug!))
     
  4. hairscared

    hairscared Experienced Member

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  5. hairscared

    hairscared Experienced Member

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  6. kimm

    kimm Guest

    Hmmmm. Probably not the synthroid if you've been on it that long. I'm not an expert though so it might be worth checking out some of the thyroid boards to see if they have insight. Someone here might be able to suggest a good one.

    The Candida totally rings a bell! Hair loss can be a side effect of it!

    I know you can target that through supplementation and a strict diet. There are candida killing supplements and it would require a starch and sugar free diet. I think milk and cheese might be off limits too. I'd read up on it though. I'm just speaking off the top of my head here.

    There are a few reasons why I think you could be experiencing the scalp pain.

    - If you are experiencing a TE (fancy word for shed from a previous event) then that might be why. I had terrible scalp burning when I went through some of my sheds. Especially the first. I"m wondering if it's just because the follicles are all traumatized and pushing out hairs at the same time. or an inflammation from your body reacting? I never figured that one out.

    - I think candida can cause scalp burning. A loooong time ago a poster on a different site mentioned going on Diflucan and her shedding and scalp pain clearing up. I tried it and it didn't work for me, but I wasn't suffering from candida. Also, on another site there's been evidence of monistat working as a hair growth aide (yes, the cooter cream) some posters mentioned their scalps feeling better after applying it to their heads for a while.

    - Lastly I think sometimes when women experience Alopecia Areata they have bouts of scalp burning. I'm not sure why.

    I can't say what it is or isn't, but maybe these will give you some things to look into?

    also if you do a search for blood tests, you'll get some good ideas for what to ask your doctor for. Things like hormones, Iron level, thryoid (although your on top of that one) may give the bigger picture and maybe show you what's up with your body to cause these symptoms.

    Good luck! We're here for you!
     
  7. alicat

    alicat Guest

    I can really identify with your pattern of hair loss. Mine is more extensive, but that diffuse pattern is something I'm familiar with. Hair loss is tough, but in time the sadness and anxiety etc disappears. I have been such a happier person since getting my wig just over a year ago. I really think a wig/topper will help you live again!
     
  8. hairscared

    hairscared Experienced Member

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    Thanks for posting alicat, It helps to know someone has a similar problem and has managed to find some happiness.

    Ok Uncle, I can not for the life of me figure out what a "topper" is...

    I am over on the Women's Hers Alopecia hair loss forum reading and reading in the wigs and topper section. They show some women with toppers on but I can't tell what they are. Is it something you just plunk on the top of your head? How Do you get the front hairline to look natural.
    When I stick a wig on my head I hate the way the front hairline looks and I have bangs. Its gross. I want to get something but I just don't get what a topper is. I just want something little, something that the hair line on my forehead looks natural, a wig looks awful in that forehead area and when the wind blows it looks just stupid.
    I must be missing something here... HELP PLEASE! I want to be happy again... I just need some guidance on a hair piece.
     
  9. hairscared

    hairscared Experienced Member

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    Hey Kimm, thanks for the great advice. I have done all of the things you mentioned and more... well I haven't done the cooter cream... OMG YOUR A FIGGIN RIOT! yes cheese, and booze and many other things I stay away from. I have taken diflican for years and other drugs. My T-Cells are messed up and there is no cure for this problem in me. I have done homopathic and many candida cleanse programs. I control it and that is it. Now if this has make my hair like this then I 'll never know because the doctors are clueless about immune stuff.
    Please explain what TE and Alopecia Areata is.
    got any ideas on what to cover this mess up with... some kinda hair thing?
     
  10. alicat

    alicat Guest

    Aww you're welcome. I just wanted to help make you feel less alone. I know feeling alone in this is a horrible feeling.

    A topper does sit on your head. It has clips and sits on the top of your head and the hair falls down over the sides of your head. . If one is lucky enough to have enough hair left at the front hairline, they can use this hair to help make the topper look more natural. People use their own hairline with wigs too if they have enough hair. I don't have enough hair, so I use my wig for my hairline. The edges don't look harsh because I have side swept bangs.

    Not all hairpieces look awful. Look around a little more and see what kind looks good on you. What kind of wigs have you tried on? I have a wig from Allegria, and I must say, they make gorgeous wigs and toppers! A lot of women from the US get their wigs/toppers from Flora. Flora can work with you via snail mail too! :)

    You CAN be happy again! I have a hunch that if you can find some coverage (topper?) you would perk up a bunch! I know I did (and a lot of women on this forum too!) :)
     
  11. hairscared

    hairscared Experienced Member

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    You have been the first person to help me narrow the hair piece down that might work for my hair loss.. If you have similar hair loss but with a little more loss then me and you went with a wig then I think that is what I will need.

    Can't anyone who is experienced with hair pieces and wigs look at a photo showing the hair loss and help that
    person pick the right wig or topper according to their hair loss?

    I don't know what I need, but someone who works with these different hair pieces should know what a person should be looking at. A little direction in this area would be a big help.

    Isn't there a diagram that shows the different types of hair loss, the different hair loss patterns and what piece would be good match to cover up the problem. ?

    How hard can that be? It doesn't mean that a person has to buy that recommended piece but a customer doesn't have clue about the hair pieces and what they are designed to cover up.

    I have to buy on line, I live on the moon, or might just as well. The area I live in is so remote.

    We have a wig shop, but they carry dusty old wigs from the 60s, they are gross from sitting in the widow for years. having to buy on line is tough.I don't see an end to this until I have spent thousands.

    I 've spent 300 in 2 days on trying to find the right piece and can't wear either piece.
    I have asked but still don't know..
    who is flora and where is she?
     
  12. Hi again,

    Okay, the fact this has happened in 6 months is actually a good sign, as it points to TE and that is reversible, your hair needs to naturally right itself to continue regrowing - look for posts by RobinL71 as she had somehing similar and has recovered.
    There is no 'set' solution for certain types of hairloss, there are just certain hairpieces better for some people than others. I believe that what you purchased sound like hair extensions or wefts. I have some too and also do not have enough hair to cover the joins. I think you have enough hair for a topper from looking at your pic.
    Flora is based in the States - just google her name and wigs or hair and you will find the site. She is lovely and if you call or email her she will be able to send you out something within a couple of days in your colour for you to try. Look through the old posts and you will see loads of posts from women using her at the moment. For a topper you are looking at $1800.
    I have personally just ordered from Kaylahou - search for her posts for pics. She helps members here get pieces which are also beautiful but a fair bit cheaper.
    I hope this helps - you just need to research carefully and come to understand what will help you, there is no ready made solution for any of us sadly.
     
  13. alicat

    alicat Guest

    I think you can wear a topper with what hair you have. I bought a full wig because that is what Allegria had in stock (toppers would be custom, and I didn't want/need custom hair).

    Flora is in NJ I believe. A lot of girls on this site have emailed her, sent a hair sample and pic and Flora sent them some really nice toppers/wigs to try on!

    I have learned that whether or not a woman needs a topper versus a wig is mostly a matter of preference. Some women who could wear a topper, wear a wig. Some women who may (should??) need a wig, still get by with their topper.

    There is soooooooo much to learn!!!! Keep reading and looking and I am sure you'll find something better than a wig that has been sitting in a window since the 60s *shudder*
     
  14. RobinL71

    RobinL71 Guest

    The quickness of your loss and the diffuse thinning (all over) pattern is indicative of TE (telogen effluvium).

    At any given time... the average person will have about 10-15% of their hair follicles in the telogen state (resting). These hairs are shed as they are pushed out by new hairs underneath. In TE... some sort of shock, insult or trigger to the body causes that number to increase up to 50%.

    Think back to a month or two before your excess shedding began... Were there... Any injuries or illness (including virus)? Any changes in medication(s) or additions? Any hormonal shifts like menopause? Any weight loss or changes in diet? Any stress? Major life changes or events?

    I believe my TE was due to a variety of triggers... hashimoto's thyroiditis (autoimmune disease of the thyroid), flu, car accident, extreme weight loss, hormonal flucuations and nutritional deficiences (as a result of the thyroiditis) and lots of stress.

    Right before and through the first several months of my TE... my scalp was itching and burning like crazy. Hormonal fluctuations can cause these scalp sensations, as can inflammation. For me these symptoms went away eventually, but man it was so intense when it was going on that I couldn't even sleep. The itching felt like bugs were crawling through my hair, the burning felt like someone threw some gasoline and a match onto my scalp, and then there was the pulling sensation (trichodynia)... felt like someone was yanking my hair hard.

    Anyway... given your age and the fact that you've never experienced hair loss issues before... I'm inclined to believe that this is TE. The great thing about TE is that in most cases and usually once the trigger is removed or resolved... the follicles recover, hair regrows and the hair cycle normalizes. The downside is if the insult or trigger is still present and you don't know what it is... it can take longer to figure things out. What I can tell you from my research is that in cases of CTE in women (chronic TE) where the insult is not known, it is usually related to a hormonal imbalance or a nutritional deficiency (iron, protein, vitamin d are the top culprits).

    Stay plugged in here... it's a good place to be. Lots of knowledge and support is shared here daily.
     
  15. angieangie

    angieangie Guest

    I find your hair loss does not look like typical Androgenetic Alopecia... it looks exactly like my pattern of hair loss... I have TE from iron deficiency.
     
  16. hairscared

    hairscared Experienced Member

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    The minute I got up I rushed to to this site and was so happy to see
    many had posted a message.
    I hope ( i guess ) That I have this TE, its temporary maybe, I 'll have that please...
    I have contacted a doctor ( Vera Price) in San Fran ( yesterday) and she has agreed to see me. I have to make an appointment today. I should get the blood results back today telling me what I DON"T have.
    I want this fixed but right now I am OCD about getting some hair...
    I am going to google some of the names you gave me.
    Thank you again for the support and I am so happy I came here...
    If I had to go through this alone I know I'd be freaking out way more.
    I 'll check in later.

    XXOO
    hairscared
     
  17. kimm

    kimm Guest

    Just a word of caution on Vera Price.

    Her bedside manner will leave something to be desired.

    You might have to bring your "tough skin" from what I've heard of her.
     
  18. hairscared

    hairscared Experienced Member

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    LOL Yep I heard that too.... ( although she was very kind in her e-mail)
    But she's good and better then anyone I could see here where I live.
    I have to travel about 4 hours to get to her. But if I don't go to someone who knows something about this it will just prolong my recovery... if there is a recovery to be had and I am positive there is!
    I maybe could find hair in the bay area but I wouldn't haven't a clue where and I don't want to get ripped off. But I may look into it and maybe Vera knows someone :)
     
  19. alicat

    alicat Guest

    Good luck!
     

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