Desperate, hair is falling out fast

[stilltired]

I would really appreciate any shared experiences, advice, insight, etc. Even if you think your comment won't help, trust me, it will. Any info I can get I would extremely appreciate. I'm sorry if I'm giving too much info, but I want to include everything in case someone might have experience with it. My hair has been dramatically thinning for about six weeks and I am really having a hard time dealing with this.

A little background:
I'm a 34 year old female, 5ft 3, 110 lbs. Have always had a ton of light blonde facial hair with several (not a ton) darker coarse hairs over lip and chin/jawline.

Unexplained fatigue, muscle weakness, brain fog, multiple unexplained symptoms for almost five years. Diagnosed with fibromyalgia and then Lyme, but no positive Lyme test so I'm still not sure if it really is Lyme even though I'm being treated for it.  

Prior to Lyme dx had every test under the sun, I was told they were all normal, including:
complete blood count )
thyroid (complete panel of tests done once, TSH tested 3 times)
Iron (normal)
Ferretin (normal)
Vitamin D (normal)
Had all hormone levels tested in January prior to starting spironolactone (within normal limits)

I was on the pill (ortho tricyclen, then generic trisprintec) for 10+ years, got off it almost two years ago. Started Spironolactone for mild acne and facial hair last Feb and noticed some new hair growth on my scalp as well as slight reduction in the few dark hairs on my chin. Because of the spiro I was told I had to go back on the pill. I went on Yaz in April, hated it and got off it in May. Was off pill for a month and then went back on trisprintec in June. Got off trisprintec in Sept because I panicked over the hair loss and thought that was to blame.

Was put on Adderall about a year and a half ago to help with fatigue and brain fog. I can take 15 to 40mg per day, I usually average around 25mg and I don't take it on the weekends. Lost about 10 pounds over 1.5 years, nothing drastic. I eat pretty healthfully.

For Lyme I took 1500mg tetracycline for 6 months. Then about five months ago I was put on Plaquenil and Biaxin. I broke out in a rash so I was taken off those after about a month and put on Azithromycin and Amantadine. Broke out in another rash and got off those after a month. I quit taking meds in early August because of the side effects.

I've been growing my hair out since last March. It's always been very, very thick and I could never see my scalp when I parted my hair even if I tried. In late August my hairdresser asked me if I noticed my hair seemed thinner on top. I had noticed because it was definitely not thinning before then.  It seemed to start overnight.  By mid Sept it was dramatically thinner. Now you can see down to the scalp all over the crown of my head, and the part has gotten wider in just the last week. My hair line has some spots that are so thin they look bare, and at the very back of my scalp it's sore and I have to brush my hair straight back to cover the part because it's so bare. It feels like there's only a very thin amount of hair over my scalp and I can feel it clear as day where I never could before. The rest of my hair is much thinner now too, and if I run my hand through it there's at least two or three hairs that come out every time.

I don't have any rash or flakes or anything, but sometimes (like all day today) I get this crawling sensation on my scalp, almost like I can feel the hairs uprooting themselves.

I'm very scared this won't stop. It started pretty fast, and being on spironolactone I'm surprised because a lot of doctors prescribe that to help grow back lost hair, and here I am losing it.  

The women in my family all have very thick, healthy hair, including my sister who has a very serious thyroid disorder since birth.  I'm terrified and devastated.  Did I cause this by going on and off the pill several times within a six month period?  Or could one of my medications have triggered it?  

I started taking biotin and fish oil a few days ago and I always take acidophilus anyway.  I've stopped taking Adderall (even though I'm back to falling asleep all day and feeling like a truck hit me all day and night) because I've read conflicting reports of hair thinning with that.  I've been off the trisprintec for a month and now I'm reading most doctors prescribe a combo of spiro and ortho tricyclen to help hair growth (exactly what I was on when my hair loss started).  If I get back on the pill will the hair loss get better or worse?  If I get off the spiro will it all fall out?  

*please someone at least answer so I know I'm not alone.

[SoHappy2havehair]

I went through similar situation. I was the girl with beautiful thick everyone wanted. Everyone in my family has a full head of hair even the men. So when I started to get alopesia I was so shocked. I am now 34 but it started at age 30 after my second child and a lot of stress going back to school, job changes, miscarriage, foreclosure, just to name a few. I went to 7 different types of doctors, got few steroid shots, some expensive shampoo. Expensive vitamins, laser therapy, Acupunture, Functinal medincine docter, went gluten free sugar free dairy free tried EVERYTHING!! Bought some human hair toppers which saved my life!! I couldn't have left the house with out a topper for 3 years and no one even knew I was wearing one! Then I quit taking adderal for about 6-8 months and I stopped shedding!! I am no longer wearing toppers and feel so greatfull and happy to have my hair back! It started coming in kinda dry and fragile but it just keeps getting better it's been great for about a year now! I do not take any pharmaceuticals. None never will again. Was on ortho for 6 years in my twenties and had a copper IUD for another 5 years in my late twenties and early 30's but I am sooo happy to hair again, there is hope. I know how hard it is stay hopeful

[margypops]

My hair grew thick again I dont know why I have noticed a pattern of hair loss then hair growing, mine is back to driving me nuts with its fullness. dont despair maybe its going in cycles...I used the tea tree oil on my hair , shampoo of tee tree oil ..but I still think it effuvia taking its time to go away ..

[kjl1970]

Hi sweets! I read and re`read the plea for help that you wrote, and it touched me because I have gone through many,many of the same things. I will be 40 December 5th. I will be brief~After years of the doctors bacically patting me on the head and telling me sorry for the hairloss, and telling me I was basically "ok" and 14 miscarraiges including failed IVF last December 24th...I researched my symptoms...I didnt have Lyme disease, I didnt have severe stress that caused my emontialally draining hairloss...I insisted to my Dr. that he run the labs I WANTED HIM TO RUN~~~I wanted  full LUPUS PANEL run, including ANA and genetic testing due to the miscarraiges and the likelyhood of mutated genes(MTHFR).
I had the Lupus Gene...SLE(look up the entire name). The major symptoms during "flares" are hair loss, severe fatique, body aches and pains, similar to the flu.
People in my situation are prone to blood disorders, that lead to heart problems and blood clots causing stroke. ESTROGEN is the MAIN drug NOT TO TAKE! No birth control pills, and the IVF I did last year had obviously thrown me into a flare...I was very sick. Moral of the story, I found someone who LISTENED to me...a DR. that cared about me rather than the all mighty MONEY!I requested to be put on Plaquenil 400mg per day. There were many studied on the drug and the treatment of Alopecia...IT WORKS Honey...I also take RX folic acid and 75mg Effexor. The Effexor is dur to the all out depression and sadness of the hairloss, stress of thinking I am alone and no one else in the world is going through the same things.It also helps, because there is a potential side effect of having minor "blues". Check into the stuff I have mentioned, I finally see the light at the end of the tunnel. Its a long road, but its reassuring that I am on the right road after 10 years....Krista

[lovrbirddiana]

Hello and how are you this fine evening, well let me tell you I had and still have alopecia areata; since I was seventeen years old. The first time I lost all of my hair it toke a whole year for it all to come out; yes I was (BALD) and I had the most prettiest hair any one could have, it was dark red ( dark alburn), thick as can be and long with big waves in it. That was twenty-four years ago and they did not know what was causing it to come out and I got shots in my head and that hurt and cost a lot of money, so that did not last long try all different things to try to make my hair grow back and plus all the money on wig ,weaves ,scarfs and hats. So my hair grew back and came out again and grew back again and God its coming out again and it has not came out in a long time, it really never came back 100%, but the hair that did come back was thick so it cover the bald areas  and its pass my shoulders and the pass two months it been coming out bad. I think it has a lot to do with my thyroids I use to be hyperthyroid with graves and a toxic goiter ; got that treated and now I am hypothyroid and iI been off my medicine for a while but I have been taking it now for about three months now. I think when I take my medicine my hair start to fall out , because when I don't my hair did not fall out at all. What a choice take medicine and be Bald or don't take medicine and be very sick. My doctor is going to have to come up with something for me I can not take it again being BALD. Twenty-four years is a long time to go though this on top of everything else I have been though.

PS. I know that I had no answers for you, but just let you know you are not a lone.

                                                                                       Take care
                                                                                         Diana
I would like to know when you fine out why this is happening to you and me?

[littleturtle]

as to why this is happening to you....bc of antibiotic use and long term bcp use....will affect your intestinal flora.  should not be taking adderal for brain fog, just need to clean up diet.  and make sure you aren't ingesting any aspartame....some of the symptoms you mention are the result of aspartame ingestion (diet soda, gum, fake foods of any kind).  btw, most western docs don't believe in the TRH test, they will tell you it is a load of ****, but it isn't. they're just lazy and don't care too much about patients who fall outside the bell curve.  keep doing your research, make sure you do the saliva test for candida (most women who've been on the pill for as long as you have been have candida)...go to globalhealthtrax.com and look up the saliva test for candida.  do it for yourself.  it's only 90% effective, but most of my patients test positive for it.  don't rely on the docs to help you out of this one...they're not interested in putting the pieces together for their patients, so you will have to be your own detective.

[littleturtle]

try natren brand 'megadophilus' which is acidophilus plus vitamin c.  you need to keep it refrigerated bc it is live culture acidophilus.  they say dosage is 1/2 tsp, but i suggest you take 1 full tsp about 10 x a day (before and after each meal and also in between)...you should notice a difference in 3-4 days.  keep taking for several weeks until you can reduce dosage.  also eliminate all sugar from your diet.  also get a TRH test for thyroid.  the TSH test is useless and doesn't show thyroid abnormalities in women until it i too late.  good luck.  

[Nese222]

Have your male hormones checked.

[Ivy25]

My hair loss began with puberty and has gotten much worse now that I am 25. My doctors have no explanation and no treatments have worked for me. If you have nay suggestions or indfromation regarding hair loss treatments I would appreciate it.  

I do know one woman in her mid thrities who suffered from hair loss that sounds like yours and it tuned out she had a hormonal imbalance( don't really know the details about what triggerd it). I think she had lower levels of estrogen and the treatment seemed to work for her. Hope that helps!

[margypops]

Hi I am having some problems also with my hair coming out ,I am older than you so I have put it down to that and the Fact I have had Hives, "Urticaria since May . and that makes my scalp itch, I have one gut feeling in your case that the Meds you are taking can be causing it ,is there any way you can test it by coming off all of them and then reintroduce them if you want to,I have heard that Adderall can cause hair loss even in chldren out on it. but I believe you said you stopped taking that, I would love to hear any follow up you get from this.