Where to go from here.

[kac51]

I am 25 yrs old and have been going through extreme shedding for the past 6 months. I've had all of my blood work taken: No PCOS, no thyroid problem (though I do have Hashimoto's but my numbers are all well within range), no diabetes, no hormonal problems. The only deficiency I had was Vitamin D. I've been to three dermatologists--all of which diagnosed me with telogen effluvium. None of them did a scalp biopsy because they felt it was obvious.

I have been losing ROPES of hair. I must have lost half of my head of hair. It grows back quickly, but then falls out just as quickly. So I lose long hairs, midlength, wispy short hairs. And I lose a lot every single day. It is basically diffused all over my head.

I am on biotin. I get laser treatments for hair loss. I tried Rogaine, but I think that gave me severe dermatitis. My scalp now flakes and flakes. It has never done that.

I am horribly upset. For the first time, I am struggling with depression.

Any advice? Similiar stories?

[ForeverBlue]

Hello,

You said you don't have a thyroid problem, but you do have Hasimoto's. That is a thyroid problem. I have it also, and my levels are also good, yet i still have lost almost all my hair from it. Be thankful that at least your hair is growing back. Mine has never grown back. I had beautiful hair until i was diagnosed, and it has fallen out ever since. No matter what i do, it just doesn't stop.

I also suffer from severe depression because of it, and i don't leave my house anymore because i'm so embarrassed by the way i look. It's really destroyed my life. It's devastating to watch all your hair fall out, and not be able to stop it. I feel suicidal every day because of it.

Just know you're not alone. I wish you the best. Take care.

[kac51]

Forever Blue,

I basically refuse to accept that this is the end of my hair. First of all, I think that most hair loss due to thyroid problems is reversible to an extent with the right medication and time. Second of all, I may not have my natural hair for rest of my life, but I will have some kind of hair again.

My problem is figuring out the next step and what is best for my overall health.

Don't give up.

[dvgvintage]

Hi KAC51, I'm new here (joined last night) and I'm at my wits end when it comes to my hair. I have hypothyroidism, and have been experiencing hair loss for years :(. I had very thick hair, so thick, that a lot of people thought I was wearing a wig. Now, I wear a scarf when out in public, and have so much shame. I started on biotin and purchased a laser comb and had some new growth, however, last night I found a patch below my left ear that looks like it was shaved w/clippers :(. I'm going to my doctor tomorrow for medical help. I can't take it anymore.

I wish you the best and hopefully, we all can overcome the hair loss.

[ForeverBlue]

dvgvintage,

I have Hypothyroidism also, and have been losing my hair since my diagnosis. I've been on 6 different Thyroid medications, and not one of them has helped ( some have made it worse ). I've tried everything, and 6 months ago just decided to give up. it's way too exhausting fighting something you can't do anything about.

I haven't left my house my house since last October because i'm so embarrassed by the way i look. I would die if anybody seen like this. I feel like a prisoner in my own home. This whole thing has devastated me beyond belief.

I could so relate to your post, because i also use to get accused of wearing a wig because my hair was so thick. I hated it, and use to complain about it all the time because it took forever to dry after i washed it, and i could never wear it up, or tied back, because i couldn't find anything that would hold it together because it was so thick. Now i look in the mirror, and just cry. I also just recently noticed bald spots around my ears.

When i was dignosed, my doctors assured me that my hair loss would stop, and that it would grow back. Well, it's never stopped, and not one hair has ever grown back. I use to believe them, until i found this site, and seen that a lot of the people on here have permanently lost their hair from their Thyroid condition. Why doctors have to lie about it, i'll never understand. I guess they want to spare us the pain of knowing that we'll never have our hair again.

I'm sorry that you are going through the same hell that i am. I wouldn't wish it anybody. Everytime i read a story about hair loss from Thyroid disease, it breaks my heart. Nobody seems to understand how devastating it actually is, unless they've been through it. Good luck at your doctor's appointment. I wish you the best. Take care.

[dvgvintage]

It was about 25 yrs of age when my GP first informed me that I had a thyroid issue. I will be 54 soon, and my hair has been thinning since then. My visit with the doctor yesterday has me a little stressed. He thinks it's alopecia areata. I have to go for a blood test to see if my TSH levels are normal and if so, he will send me to a dermatologist. he said that steroid shots at the site may help. With all the technology available today, there must be something that can be done to help women that have lost their hair. I'm so bummed. Take care and try to have a good day.

[sister1]

ForeverBlue,

I too have the bald spots around the ears. I am so tired of combing over the bald spots and I barely have enough hair to cover. I realize that I have to go wig shopping, I may not get my hair back. I am hoping I can find something that makes me feel good about my appearance again. I am really tired of the isolation. My feeling is that perhaps I can find something, so that I don't become my hair loss. Does that make sense? I feel like I am becoming my hairloss...some balding chick without a life. I love to garden and today for the first time in a long time I felt good. I did something that took me away from thoughts about the hair loss. I can't control this, I am ready to just try and find a look that I can live with. I use to feel pretty. I am just going to go out and find some diva hair. My parents are flying in to help me do this. I see the dermatologist next month...this will be the third derm. Hang in there! It has only been a year for me...so you are one strong lady, if this hell has been going on for you for three years!!!! There are so many times, I have felt completely hopeless and wondering how much more I can take. I am glad to have found this forum.

[Luc30]

I am not sure what is caused my hair loss - thyroid or the medication. Doctors don't know it, but I suspect it was the medication. The thing is - I suffered severe stress for a period of 6 months. I then noticed some thinning of my hair but not much. I suspected then that my thyroid was off and I took a test. It stated 6.2 TSH. Doctors placed me on 25 mcg of levothyroxine...the rest is history.

In 6 months I have lost nearly 40% of my hair, and developed PCOS. The shedding was terrible. I must have lost upwards of 300 hairs a day - and have very short boy cut hair. Because my hair is thick I can for the time being (and hopefully for many years to come) wash it with Nioxin, and use Toppix - the combination hides the bald spots very well. I stopped my medication cold turkey in October because the depression was so severe, I was CONVINCED my medication and the hair loss was doing it. I couldn't think; my head was so foggy I could barely form sentences. I made an executive decision to quit the medication after a kitchen knife looked very very friendly.

I re-tested and discovered that my TSH was now 9.6. It had increased rather than decrease to normal levels! I started seeing another doctor who specializes in holistic and traditional thyroid treatments. He quickly put me on Adrenal Fatigue support, and began a system of detox.

Within 1 month the shedding slowed down to what is normal (20-40 hairs a day), but the damage is done. My thyroid has returned to 6.2 TSH after 7 months - and I'm seeing a cardiologist (the medication also caused massive heart palpitations and now I have to deal with whatever damage it created). The cardiologist says that some people naturally run a higher TSH. All my other levels are normal. My PCOS by the way? No longer existent.

I see some regrowth, but not nearly enough to cover the gigantic bald spot on my front area that I see when my hair is wet. I worry everyday that it will eventually get worst and it will become apparent when dry. The re-growth is very thin and fragile. Some say that the first regrowths are like that - I don't know. I saw a dermatologist who did not diagnose me with tellogen. She diagnosed me with systemic hair loss - in other words, hormone related hair loss. I suppose the good news is that she did not diagnose me with AGA - but it can be. Again, who knows.

Bottom line. After much heartache and massive amounts of money (all 3 doctors do not take insurance) I have learned that levothyroxine/synthroid is poison. I may yet have hypothyroid, but 6.2 has always been my range for the past 15 years and I did not have hair loss then. I have to blame it on the medication. I have decided to see Mary Shomon's doctor. She is an expert on thyroid and hair loss. I want to give my body time to heal, my spirit time to accept these changes, and eventually come to some understanding of what happened to me.

I don't know if I will ever be able to regrow my hair - but I can't allow myself to be poisoned like that again. I gave up the "holistic" doctor because he wanted to put me on another trial of levothyroxine to balance my adrenals and my thyroid. No way. The past few months have been terror. I've had days where suicide is a constant thought. Other days I spend time on the internet looking for places where I can fit in as a bald woman without much reproach (NYC is winning by the way). I have even considered changing my career, just so I can look "trendy" LOL (that actually has been a lot of fun).

I found a stylist who works with women battling cancer. She cuts my hair and doesn't remark on it. It buys me some peace.

Truth is, I can't kill myself. I have a mother to look after (part of the stress that started this drama in the first place). I have things I want to do with my life still. I have made an appointment to see DOV (highly recommended here) at his salon in NYC. I need to know how a wig feels before I make a decision of how badly I am going to take this - should it happen. In the meantime, I do a lot of meditation and positive self talk. I also have decided to remove stresses from my life. Stress CANNOT help the situation.

I don't have answers, just an advice - be really careful with thyroid. Make sure you truly do have a problem before you jump on the pill wagon.

Good luck and lots of hugs!

Luciana

[sister1]

Hi Luc 30,

Your story is one of great strength and perservernce. It gave me so much to think about and I will heed your advice regarding medications, especially in relationship to any heart damage. I am on Armour and that certainly is a risk factor. Will you please keep me posted on how things go with Mary Shomon's doctor? Is that doctor in NY or do you have to travel?


At least with the wig, you can change your mind as much or as often as you wish without a great deal of risk.

Take care and thanks so much for your post.

Sister1

[Luc30]

Hi Sister1!

Thank you for the praise on my story!

I am not sure how much you know about Mary Shomon, but she has been an advocate for thyroid hair loss for years, and have an extensive amount of experience on the issue of hypothyroidism and hair loss. She has managed to regain her hair after battling thyroid. You can find more information about Mary Shomon here:

http://www.thyroidawarenessmonth.com/contact.htm

There is a Facebook support group as well that I belong to. If anything, this support group lets you rant like hell, but it also offers a place where you can get some advice from veteran thyroid soldiers:

http://www.facebook.com/BetterThyroidCare

Thyroid Hub was created by Mary Shomon (and others) as a innovative way of monitoring your thyroid levels. I have not tried it yet, but it's my next thing to do. Check it out here:

http://www.facebook.com/thyroidhubhr?v=app_4949752878

Doctors at times WILL NOT want to order certain blood tests, if they don't see a necessity for them. As far as I am concerned that is too much power to just give away to them. So I started ordering my own tests. While insurance doesn't pay for these, the packages offered can make exams a bit more affordable. Also remember to claim these as deductions on your taxes. Either way, if you ever wondered about your Ferritin, Iron, Progesterone, Thyroid, Glucose levels, all factors that can "do your hair in", you can order your own exams at: www.healthcheckusa.com. They use the same labs as doctors do (LabCorp for one). I highly recommend. I monitor my thyroid levels every 3 months.

Finally, Mary Shomon's doctor is Dr. Kate Lemmerman. I called yesterday, but she is no longer taking new patients. However, her co-doctor (is that what they're called?) has extensive knowledge of thyroid issues as well, because she's hypothyroid herself! (how's that for a twist?). I made an appointment with her (Dr. Adrienne Clamp). They are both located in Mclean, Virginia and focus on a mixture of holistic and traditional healing. I will keep you updated on my experiences with them.

I am hoping that this is the end of the line for me in terms of finding a suitable doctor to treat my thyroid (if it indeed needs treating). They're very expensive - but I figured if a thyroid advocate recommends them, well, it's worth a shot.

In addition, my cardiologist and I have come to the conclusion that one culprit in my hair loss might just be Sleep Apnea. I'm due for a sleep study in a month. I will keep this board updated on that as well, because who knew sleep apnea can contribute to hair loss?

http://www.hairlossbuddy.com/21/sleep-apnea/

I take a battery of vitamins as well that have greatly helped. I recommend Evening Primrose (like many other ladies here). I do think it had an effect on not only diminishing shedding, but also regulating my progesterone/testosterone levels. I will discuss with my new doctor the possibility of introducing Lugols Iodine to the mix. Some people have found thyroid improvement after using Iodine.

It took over 8 months for me to amass this amount of information and support to help me understand what may be happening to me. I hope I helped in some way here!

Have an awesome week!!!

Luciana

[Robynkay35]

Did you start or stop birth control? Trama to the body. Extreme weight loss? Just wondering if something happened. Sounds like TE.

[sister1]

Luciana,

You've given me the greatest gift; hope. I know I have sleep apenea. So, I will get that study finished....imagine this; I couldn't get it completed because I couldn't sleep! LOL That was before the progestrone....I didn't sleep all summer,, more than 4 hours at a time. It has slowed the hair loss but it is still shrinking and very alarming-it seems that nothing is growing or very little is growing (I use to have too much hair). The burning scalp has decreased with the hormones. I just wonder how much do I need to be on? I asked my doc this and he wasn't sure what it would take to get hair growing on the scalp. Since all this was set off by stress and a perm etc. I am going to see the top hair loss specialist in the state (dermatologist). Who knows what he will say.

I don't see a great deal of difference with the primrose...but I'll stick with it, based on your advice. Do you eat sugar? Do you have any issues with candida?

You can't put a price on a good doc. I have spent so much money on bad advice. It pays to get good advice....why not see that doc that you are planning on seeing? How long do you have to wait?

Does anyone know if you get a front lace system if there is damage to the part of your scalp where the adhesive is used? I am curious what people are paying to have someone help them with such a hair system.

Thanks in advance for everyone's help-it has been so comforting!

Sister1

[sister1]

Luciana,

I hope I didn't forget to thank you for all those wonderful links!!! I purchased Mary Shomon's "Guide to Hair Loss". I noticed in her story she said that she did best with a second med in addition to the Armour. Please keep me updated on your experience with the hair loss specialist.

I AM SO OVER IT, in terms of my hair. I want to go for the full lace wig but I am worried my scalp will be sensitive to the glues that they put on your scalp to nail that sucker down....Then you have an additional problem because they must shave your head to do this I understand. I don't know, I am having my first consultation this week. Secondly, I am going to pay out of pocket to see a derm that specializes in hair loss.

It is so nice to hear from you and again THANK YOU for your post!

Hugs,

Sister1

[missourilady]

I went to an endo doc and after all sorts of tests was told that he really had no answers to my mild hair loss. He put me on spiro which I discontinued as I would prefer baldness to tumors. I am preg right now and during early preg had extremely low levels of progestrone. I think this is probably my hair problem as my hair virtually stopped falling out on the progestrone pills. I am currently usuing natural progestrone cream. I experimented a tad with it by taking and not taking it and within several days of not using the cream my hair once again filled my brush. I am using emerita pro-gest. It may not be for everyone but I think I must have fluctuating levels that the doc just didn't pick up on and as long as my brush remains hair free I am going to use it as I think it has got to be safer then spiro. It also seems to help with moodiness.

[Cassy]

missourilady
I am very interested in your thoughts on progestrone. I was under the impression that taking it could cause MORE hairloss. My Dr. asked me if I wanted some and I didnt take it for fear of shedding. Does anyone have info on this?