Chronic Telogen Effluvium?

Chronic Telogen Effluvium

Hope never dies.  Having lived with chronic telogen effluvium for 14 years, I still find myself hopeful that  the current shedding that I am experiencing will be my last, that the new ¼ inch hairs that are now sprouting on my scalp will be the real thing – that they will live out the normal cycle of hair growth and shedding.  Yet, I know realistically that this is not what will happen.  I continually shed and grow hair, but the cycle is such that by the time new ¼-inch hairs reach a length of two inches, the old two inch hairs shed.  Consequently, my hair is always sparse and always a source of shame and worry. 

Perhaps coincidentally, perhaps not, the telogen effluvium started 14 years ago following an intestinal illness that rendered me unable to eat, for a period of time, anything but white foods such as chicken and rice.  After a course of treatment and recovery, I shed massive amounts of hair.  A few months later, I was very relieved when it began to grow back.  My relief was short lived, however, because it soon began to fall out again.  The shedding is preceded by a distinct feeling that my hair is changing texture.  It begins to feel like “Barbie doll hair,” that is to say, it feels coarse and lifeless.  When that happens, I know that shedding is imminent, and it generally happens a week to two weeks after that. 

With the proliferation of information on the Internet, I have, over the years, read many accounts of women suffering from telogen effluvium, but most do not experience it as a chronic condition.  I know that the condition sometimes follows an illness or injury and I know that it can sometimes be related to stress.  While I am generally a healthy person, I do live with a certain amount of unavoidable and ongoing stress.  Being an active person, I have had several sports related injuries over the 14 year period, but many people have the same or worse and do not experience the consequences as chronic hair loss.  I eat very healthy foods and take biotin, folic acid, vitamin D, calcium, a multi-vitamin, and Moducare (a plant based sterol).  

I do take three medications that have rare side effects of hair loss:   Plaquenil, 200mg twice a day, amitriptyline 10mg once a day, and a steroid nasal spray once a day.    I think it unlikely, however, that they are the culprit.   Plaquenil might be the likeliest medication to cause the problem, but I have only taken it for five years and the shedding has been going on for 14 years.  I do have Sjogren’s Disease, an autoimmune condition, that manifests primarily with dry eyes, and I have wondered if  some form of autoimmune disease might be the genesis of my hair loss.

For a woman, I feel, more so than for a man, suffering ongoing hair loss is a devastating psychological problem.  Most recently, I find myself considering giving in and buying and wearing a wig.    Perhaps that will have to be my solution, and yet, I have resisted doing so because for some reason I still remain ever hopeful.

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7 comments on “Chronic Telogen Effluvium?

  1. Christina on said:

    Hi Camille,
    I’ve seen your reply on ans was wondering how hace you coped with Chronic Telogen Effliviun, if you’re wearing a wig…how? I’ve had been dealing with this ciclycal hair loss for nine years now and just want to forget about it.
    Thabnks a lot!

  2. Christina on said:

    almost a year ago I posted here to talk about my Chronic TE. Well, it stopped in november but came back on time, after six months; that is, a month ago. I’m now going through my ninth massive shedding in 9 years. I should get used to it, I guess, but just don’t. I was wondering if any of you has finally found a trigger or solution.
    Thanks a lot and have a good day (despite of the hair : )

  3. londongal on said:

    I’ve had CTE for over 15 years. You just learn to live with it. Unlike you ladies I don’t seem to experience periods of recovery. Just continual shedding which slows down a bit from time to time, but no noticeable regrowth. Gave up trying to work out the causes about 5 years ago and just use camouflage methods now (hair extensions – yes I know this makes it worse, but hey ho, they make me feel like myself again). I did try recently to get a few more tests underway (getting thyroid and iron levels checked again) but the doc wasn’t interested (are they ever?) I just came online in the hope I would find some recovery stories (just ran my hands through my hair earlier and it’s more hair than usual come out) but will just wish you all best wishes and have another scout around.

  4. Camille on said:

    I had TE for 35 years. My hair will grow on average 1 year and then start to shedding. I am going through a shedding period now.
    I had my blood, thyroid checked. It is a very puzzling condition that I have learn to accept. I will never have a full head of hair again.

  5. Christina on said:

    Hi, Amy, thank you for your reply.
    Did anyone tell you what the cause of your effluvium is? Does it has anything to do with an autoimmune disease? I also suffer from atopic dermatitis, but I think that started around two years after my first shedding. It’s been over 7 years now and this one is being the worst, since unlike the other times, it hasn’t stopped in over one year (before now my TE used to be cyclical, every 5/6 moths). I’ve never seen my hair as bad as rigth now, I’m even thinking about shaving it and buyin a wig.

    In my case nobody’s been able to finf a trigger. My blood test, hormones, iron levels…are fine.

  6. I have had CTE for 7 years. The only thing that has worked for me is intramuscular steroid injections such as triamcinolone 40 mg every 4-6 months. The shedding stops almost immediately and the effect lasts anywhere from 3 to 6 months then starts up again. There are side effects from steroids to be discussed with your doctor. Good luck.

  7. Christina on said:

    sorry in advance for any spelling-grammar mistake, I’m not an English native speaker.
    This is the first time in almost 8 years I’ve found a story that could actually have been written by myself.
    I had my first TE in 2006 and since then I’ve been living with it. For 6 years since that first episode happened
    I’ve being suffering from massive hair loss for around 6 months, followed by another 6 where the recovery was significant.
    I even shaved my hair once as I was totally desperate and no doctor of any kind has never been able to say what’s wrong with me.
    The only trigger seems to be “stress” but the truth it I’ve had TE even when I had no stress at all.
    My bood test are just right and I’m a healthy person.
    When all this started back in 2006 I visited one doctor after another, hopeless. Then I quit.
    However, this year’s being different as my TE is being going for almost 10 months now. I have no bald patches
    but my hair density is just a shame as I’m trying to keep it long but has no time to recover
    I’m like a sheeding cat. I know I should’ve get used to it but I just can’t. One can’t get used to constantly collect hairs from the floor, my clothes, my pillow…

    Have you found any treatment than actually helps?
    Thanks a lot!