TE Recovery Story - There is Hope!

Hi, everyone,

I've visited this forum occasionally, but I haven't posted here until now. I'm 26 years old, and I've experienced a 7-month bout of telogen effluvium. My trigger factors included rapid weight loss, anemia, and complications of endometriosis that temporarily affected the ability of my ovaries to function properly.

I know how devastating this type of hair loss can be (I lost 1/3 to 1/2 of mine during this process), and I empathize with each and every person experiencing it. I wanted to share my experience with others so that they, too, may find some hope and encouragement.

First, I began addressing the issues that caused the TE. I began eating a healthful, balanced diet with an appropriate amount of protein, I took an iron supplement to raise my ferritin level, and I sought medical attention to bring the endometriosis under long-term control (I'm presently on 100 mg of Prometrium twice per day for this). Additionally, I've begun using Nioxin shampoo daily.

My degree of shedding is gradually decreasing, and widespread regrowth is taking place. My dermatologist feels that it will return to its normal density in time.

There is a light at the end of the tunnel. I know how it feels to have others tell you not to "stress out" about it, because it makes it worse, and I also realize how difficult this can be. Do the best you can to get through it, and please know that things will get better.

I hope this helps.

Love,

Allison

Hi Alison
Great news, I'm so happy to hear that finally there's some hope out there for all of us in the same boat, I had no idea endo could have anything to do with hair loss, did the hormone test show this?...I've posted a few posts in the past few days, and had some good advice, an iron test is next on my list, I was told I had TE as well, my hairs been shedding for a few months, did you lose all the shed hairs then your hair regrew, or was it a mixed process of losing and regrowth the whole time, I'm a little confused as to how it will happen, as I can't see any regrowth as of yet, which is a tad worrying, tho I'm not sure what to look for, anyway, thank you for posting a positive letter, some of the posts I've read are so sad, it's easy to get disillusioned about a happy outcome, I certainly have had my ups and downs, sadly more downs, but, please keep us posted in weeks to come of that thick mane of hair you're gonna have Tricia

TE Recovery Story - There is Hope!

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Originally posted by KittyKattHi Alison
Great news, I'm so happy to hear that finally there's some hope out there for all of us in the same boat, I had no idea endo could have anything to do with hair loss, did the hormone test show this?...I've posted a few posts in the past few days, and had some good advice, an iron test is next on my list, I was told I had TE as well, my hairs been shedding for a few months, did you lose all the shed hairs then your hair regrew, or was it a mixed process of losing and regrowth the whole time, I'm a little confused as to how it will happen, as I can't see any regrowth as of yet, which is a tad worrying, tho I'm not sure what to look for, anyway, thank you for posting a positive letter, some of the posts I've read are so sad, it's easy to get disillusioned about a happy outcome, I certainly have had my ups and downs, sadly more downs, but, please keep us posted in weeks to come of that thick mane of hair you're gonna have Tricia

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Hello,
Visited the dermatologist 2 weeks ago when i noticed unusual high amount of shedding of hair. Though he has assured me that TE is temporary, and everythign will be back to normal within 3-6 mths (depending on individual).. In late Jan, I was running high fever and dry cough for more than a week before being hospitalized for pneumonia; then 2 weeks after discharged; got a new job, and also had to juggle new work and part-time school exams. Both the doc and me narrowed down to the High Fever and pneumonia as the trigger factors, and the way he explained to me the condition of TE seems like no big deal, and easily solved with a couple of months.

However, more i read the posts in this forum where people share their problems, the SCARIER sounds...
Now, I'm really Worried... about having having my soft, glossy hair back...

Would you believe that my wife now has what I consider to be TE? She is in denial, but I can see she is thinning fast and I find her hair every place.Her diet may be the cause but I do not think diet alone is doing it.

strange

This is very strange about your wife. I see a few cases on this board where people are baffled that all in the family are losing hair. Actually, more than strange-scary to me. I also have TE and AGA and seb derm (or some "d" thing) I know that you also suffer with seb derm. Does your wife seem to have that issue as well? My daughter is losing hair, too, but doesn't seem to have the scalp issue. It's very good your wife is not worried-that's the worst she can do. Frankly, I wish I were still oblivious-or if my hair has to go-I'll be glad when I have adjusted so I can go on with life. Try not to get her stressed about it. You may not believe it, feeling as you do, and I may be totally wrong where you are concerned-I don't know the extent of your feelings-actually, I think I do-have seen your posts-but...that said, I truly don't think you will ever suffer for loss of your hair as your wife will if she goes on to have a bad case. We do accept bald men in our society but not bald women. One thing I hope for her-if this is a problem that continues-is that you assure her every minute that she is okay however she is. I stress so much over my hair-the problems started so suddenly and are progressing fast-in my heart I know my hair is gone in a matter of how long it takes the last of the growing hair to go to telogen-biopsy shows much of my hair is in catogin-I think that's the word used-anyway-shot! I now have no faith that the derm or anyone can stop the ravages of this dermatitis. And then there's the AGA...... my husband is so sick of me talking about it-not me-but my talking about it. He just doesn't understand how upsetting this is-how it consumes my life and thoughts. We are buying a beautiful new house and I just don't care about it at all. You at least will understand and not minimize her feelings. I surely hope hers does not prove to be a problem, though.

My wife is so sick of me talking about it-not me-but my talking about it. She just doesn't understand how upsetting this is-how it consumes my life and thoughts. NOW understand me? Perhaps she will now.

I know it's much much worse for a woman but men have killed themselves over it, so never underestimate the pain we go through.

you're right

You're right, Mr. T., no one can assess how upset another person will be over hair loss. You and I are consumed. I tried counseling-that lady was losing her hair, too. I spent several hundred of my dollars giving her the benefit of my newly acquired knowledge and didn't get to feel on bit better about how to go on without hair and stay sane. LOL I actually know of some women who have lost it all mostly, adjusted and bought that wig and are happy enough. My husband is bald-started when he was in his thirties-doesn't care a bit. My daughter is losing her hair, as I said, though she denies it, too. Told me she would leave and go back to her home at school if I didn't drop the subject. I wanted her to try another B/C pill for her endometriosis, one less androgenic. But she told me she would rather lose her hair than go back to those terrible cramps. She will not be saying that if it really happens-she will be as distraught as I am-she's only 22. She will be distraught-but I am more now because I have to worry about her as well as me-she will not have that issue. I have no one to talk to here-going back to the derm tomorrow for more bull, I guess. My face is getting a little rashy now. I just read on another thread that a guy is saying his wife of one year is getting the same thing he has-seb derm with hair loss and AGA-and he doesn't think it is so simple, if she is now losing her hair as well-how can this whole thing not be contagious? Kevin suggested that though it might be contagious, it is more likely they are subjected to the same trigger-shampoo, too much lime in the water...... my first thought of what caused my scalp problem was Pantene Clarifying shampoo used for years-which I too later learned is very harsh-really high pH. Also my scalp bothered me most when I was at the beach-real problem started when I had just come back. But I hadn't been in the ocean water every time-what was something done every time-well-drank too much wine. I continued drinking the wine-needed it, you know-after my hair started coming out. Don't worry-just a couple glasses a day-tried to wait until 4:00 PM LOL Now, back to the high pH and too much lime in the water. Don't they use lime to raise pH of soil so it may be this guy's water had too much lime-just a Kevin guess-but I got to thinking-maybe the water at the beach coming out of the faucets has too much lime and that is why I had a problem with going to the beach!!! Then I thought the other day-perhaps you are reacting to the sulfites or something in the wine so as of yesterday-I quit-cold turkey!!! LOL I will miss it And just in case that high pH and lime in the water thing (this lime thing may only be in well water, who knows) is affecting me, I'm now going to wash my hair with only bottled water. But it might have lime, too. As with most medical problems, except for very obvious ones, like cancer and such or a broken bone, you shouldn't expect that a doctor will figure it out-you'd better get cracking and figure it out yourself. For heavens sake-your scalp is just skin-how can it be so difficult. I wish I could get the attention of a few intelligent high schoolers who like to research-we might get an answer. I read my doctor's report -ask to be sent it-she said she thinks I really do have a very unusual form of telogen effluvium. Tomorrow I will ask her what is meant by unusual. And she said I have significant seb derm. Guess what -the last derm said my head was just red now-like my neck LOL-normal color and I had no dermatitis she could see and no expect was going to be able to turn my head back white. TUNE IN TOMORROW FOR AS THE WORLD TURNS-will the derm come up with some thing helpful will she tell me to quit reading her reports and getting her diagnosis confused with the facts-will she tell me to go somewhere else since I have so many questions?

Today I went to the park with my wife and kids and all I could think about when the wind blew was how terrible my hair must look.This is no way to live.Even with it very short with Hair GEL and Spray it gets screwed up.Could not wait to get home and fill in the spots with Toppik,sad,real sad.I saw some guys at the park with buzzed,shaved and bald heads and thought how free they must feel.Let it rain, blow and storm all it wants and they would not care a bit.sunday here and I cannot get any beer unless I go to a bar or restourant.I have to relax.

no beer

WEll, Mr. T., I do understand how you feel. I haven't seen my hair blowing in the wind so I don't know how that looks-don't think I'll try to see-when it first came to my attention, I was so conscious of how much more I could feel the air on my scalp-actually pleasant except for realizing that it's not a temporary thing and I will feel much more air soon!. I think I can safely say this-unless another person you see in the park is also having hair loss, he/she will not likely even notice your problem. I know that before my hair starting coming out, I never even thought about how other people's hair looked. People just had what they had and it didn't get my attention in any way. I'm hoping you will begin to see how freeing it must be to just be done with it-now I have no hair so I don't have it to worry about, you might be able to think. I truly wish the end of my hair did not mean I'll have to wear a wig-because I will. I don't think I can bear it. Too tight-too hot. What's happens if I get in an accident and my wig comes off and everybody is standing around, not only looking at my broken body but also at my bald head? And if I have to have an operation and I can't wear the wig and then.....and when I get old and have no mind and nobody in the nursing home will care enough to put my wig on or get it on straight? The stressing is endless-and now I am denying myself the wine I deserve to help me not care so much for an hour a day. I think the worst for me is that I do not have any faith that anything can be done for me in the way of treatment-at least you have something going that might have benefit-have you considered that stuff that some are using- the topical of B-6 , zinc , and distilled water. It must be working for some. I refuse to go for the laser comb-Kevin say it just might get results for a while but might eventually just damage the follicles.

As the World Turns

Life goes on........last appt. the derm said that I could not begin any therapy for my AGA until we got the stubborn seb derm cleared up-gave me an antibiotic and an antibacterial shampoo. The therapy didn't help-I went back today-now she says she doesn't think I really have a seb derm....my head is just that color -pink or red-depending on where you look. (she thought it was very inflammed last time-biopsy said inflammed). She thinks the irritation, itching and burning are just sensations I am having-possibly due to nerves. That said--do I begin therapy for the AGA.......no, let the scalp thing clear-one thing at a time......don't try to fix one thing until you get the other resolved....but what happened to the idea that there is nothing wrong with my scalp to begin with.....