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Telogen effluvium
Alright all just wanted to know anyone who has telogen effluvium ever experienced losing hair from eyebrows?.I have had this for about a year now and still my eyebrows are thinning don't know if this is normal with TE.
Replies to This Discussion
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Permalink Reply by LilyBell*Murphy'sLawLuvsMe on
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yes chronic TE can thin eyebrows - but it is not common - but it can happen. Some have tried Rogaine for this and it worked for them. You just rub a little on your eyebrow area from what I understand careful not to get any in your eye
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Permalink Reply by Betsy on
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Can you tell me how one diagnoses telogen effluvium? My derm has never told me I have this, but it is quite possible they are missing something as I feel I have received very poor explanations of what is going on with me. Thanks!
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They do a scalp biopsy along with take a health history looking for triggers - like illness (even the flu can trigger it), stress that is significant like divorce, loss of loved one etc and recent anesthesia. I started with TE which went to chronic TE and then also have FPB - I think the TE burnt itself out so now I am left with the FBP which I was told is genetic but can start even decades earlier than it might have from very stressful events. A scalp biopsy is a good way to figure things out
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Thanks for letting me know. My Alopecia totalis started in May and is now progressing to universalis. The derms around here (midmichigan) have been pretty unhelpful. I have an appointment in January at the cleveland clinic hair loss clinic and am hopeful I will get more answers. I have not yet had a scalp biopsy.
Your answer brings another question to mind...I have been seeing a lot of specialists trying to figure out what is going on with me. One thought is I might have celiac disease which can also lead to hair loss. I am scheduled for an endoscopic procedure early January to determine whether or not I have celiac disease. This involves the use of propyphol (sp) to put me to sleep. Perhaps this is not a good idea if it could be a trigger?
Thanks for your help, still trying to sift through all the information here.
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Well if you are already losing hair I doubt the anesthesia would be a trigger - but it definitely is something to discuss with your doctor. I thought they could test for celiac disease with a gluten allergy test - I did not now they needed to do an endoscopic procedure.
The scalp biopsy should answer quite a few questions. Even if it is AT or AU if it is non scarring you could grow the hair back at anytime. The biopsy is easy - I have had two - just a numbing agent then like one stitch. Not painful in the least and then they send it out to be read and the results will be gone over with you by the doctor. Also, some derms have a super magnifying camera where they can show you what is going on with your scalp and hair and in my case I could see that some of the hairs were much smaller in diameter - indicating FPB. There can be some differences between the hair getting thinner from TE and the follicle miniaturizing - it is still sort of confusing to me but I think the biopsy can tell the difference between the hair getting finer from TE versus from the follicle getting smaller thus producing smaller finer hairs. Good luck with your doctor - write a list of questions before you go because if you are like me you will forget something you wanted an answer to until you are in the car on the way home!
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Thanks for the info, LilyBell!
The definitive diagnostic test for celiac disease is a biopsy which they have to do endoscopically. The blood test is not definitive. At this point I feel like I need definitive answers.
Soooo good to know about the scalp biopsy. It will tell me if there is hope or not. I guess the question is, are my hair follicles "dead" or just sleeping? I hope I have not taken to long to figure this out. Sooo frustrating that the doctors around here haven't told me any of this stuff, done a biopsy or looked with a magnifying glass.
I am moving forward with a vacuum wig this month as I want it by summer. Do you know much about this? I guess it is kind of a risk as my hair might grow back and I might be wasting money. However, I am losing hope and my gut tells me to go with the vacuum wig.
Good advice on writing down questions, I will absolutely do that! It seems I am getting more info on AW than anywhere else!
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Hi, Besty, I know there is a wig called the gripper which I think is a lace wig with a 'non stick' silicone membrane around the perimeter as opposed to the entire wig being made of a silicone base. I think there is a group on here for women who have or are thinking of getting a vacumme wig. It seems from what I have read you either love them or hate them - most on here seem to love them but for the vacumme to work you have to have basically a smooth head.
Don't fear 'waiting too long' because from what I have been told it is either scarring or not - the not does not progress into scarring - they are separate beasts - so waiting would have zero impact (except of course for emotionally - I like to know what I am dealing with ASAP and then get on with it)
Have you tried wearing any other type of wigs? I found I needed human hair as synthetic ones made me itch and I have a small head so I went the custom route. I spent a lot of money trial and error before bitting the bullet and just getting a custom one made. I find it not too hot or itchy and I am like the princess and the pea when it comes to wigs - super sensative.
I have read that if you do have a gluten allergy it can cause hair loss so if you do find out that is an issue a change in diet may help with hair regrowth.
Also, when I go to really important doctors visits, ones where I know I will be inundated with information, I try to take someone else for a second set of ears so I can confirm what I think I heard. Maybe someone could go with you - if for nothing else, emotional support.
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Permalink Reply by Julie Koch on
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Hey Daniel! I saw your post on TE and had to reply as well. I woke up one day with severe scalp pain and my hair loss started about a month after. It took over a year and 9 doctors to finally come to a diagnosis. I had every test done and was diagnosed with Celiac disease as well. They are certain that the Celiac is not causing hair loss and was diagnosed with Chronic TE. THey came to this conclusion because when they did a gentle hair pull test I was losing more hair than normal. They could also tell it was TE and not ALopecia because when they looked at the bulbs under the microscope, they were all in the TE stage. Celiac disease can cause mild hair loss in some people but if their diet is good, then it shouldn't be an issue. I noticed thinning of my eyelashes and eyebrows for a month but nothing since then and they grew back. They also said I had TE because I didn't have "bald" patches but rather an overall thinning of my hair. I lost about 50% of my hair but it is growing back slowly. I also developed seb derm of the scalp but am keeping it somewhat under control with Selsun Blue every other day. My TE was probably due to severe emotional and mental stress from having had eating disorders for 18 years. I still battle them daily and am very malnourished and underweight (86 pounds). That is also a factor in TE. My scalp pain is still there but seems to hurt less when I am taking an anti-depressant. Hang in there and feel free to reach out to others, or me, if you have any other questions!!!
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Permalink Reply by Michelle on
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Hey Daniel,
It has been an on going battle for me too... I have been experiencing eyebrow loss and eyelashes along with other body hair.. The Dr told me I had TE that turned into Chronic TE and FPB... I am waiting for eyebrows to stop falling out along with all the rest of the body hair... I wish we new when it was going to stop. I thought once my year hit I would be good. I guess that doesn't work for everyone.
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Daniel did they at least do a scalp biopsy so they could give you the correct diagnosis? There are different treatment options depending on what you have and some look similar to others - for example diffuse AA looks like chronic TE - a scalp biopsy will tell you the difference.
No 'treatment' is effective for everyone but at least you would know your options if you knew what you were dealing with. Many docs in the US dont really 'care' about hair loss either - I was fortunate and found a very good derm on my second try - but I had to wait 3 months for an appointment which is pretty unusual in the US.
The first derm I got in with in a week - she was flippant and rude. And I quote "Good Lord, that is the worst case of TE I have ever seen'! Are you kidding me - even if you thought that would you actually say that to someone who is obviously already upset about the whole thing!
After my second visit I insisted on a scalp biopsy but my new derm did another one - I guess she questioned the first one or just wanted to do the biopsy herself. The second doc took the sample from a place I was actually shedding as opposed to the first one who took it from the back of my head where I was not shedding.
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I hope you get the answers you need Daniel! I know how frustrating this can be for us and some doctors think..."well, you're not dying so don't worry". If it was their hair and their emotions, they would be reacting differently. What if it were them or their daughter or wife? Hang in there. It took over a year for a diagnosis for myself and they are still not 100% sure on everything. I have come to the conclusion that "my hair is going to do what it wants" and "it is what it is". Sucks to have to live by these "thoughts" but it gets me through the day. Please keep us posted!
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