2 days now & be the glory to God, I’ve only lost about 10 hairs today TOTAL not all at once like when I used to run my fingers through my hair. I think maybe the spiro’s finally kicked in.

It’s still a bit early only 2 months into it BUT I’ll count this very little shedding as a blessing.

Keep u all posted!

any updates on spiro? I’m on 150mg a day been on it for a month & I’m still shedding. PRaying to the good Lord my shedding will stop soon!

For you who are on SPiro, you guys are so lucky that your doctor’s even prescribed Spiro to you. I have been trying to fight my hair loss, acne, hirsutism (PCOS in general) for ages & ages, my doc just gives me stupid useless medicine like Minomycin, Doryx, Clindatech for the acne, doesnt work at all. In the 4 years ive had PCOS he has not given me not ONE thing to help treat the symptoms & prevent future implications. I was getting hives on my face 24/7, doc didnt know how to get rid of those, after doing MY OWN reserch i started drinking wheatgrass juice, bam no more hives since. I can eat any foods also, couldnt have acidic foods for a while & that was painful. What im trying to basically say is, my doc is an idiot & he is frustrating me. He made me cry yesterday giving me a straight up & abrupt NO to giving me SPiro. I question his knowledge & skill & honestly am not going back to him ever again.. He hands out BC like candy btw. Something which raises insulin/glucose levels so if your pcos is due to high insulin levels, BC isnt ideal. All i want is Spironoloctone. Thats it. I have been combating my hair loss (trying to) for a year now & acne for 7 years or so, ive tried all these other methods, ive tried not stressing, ive tried herbal & natural, (have only been on herbal med for 3 months & realise it takes upto 6 months to see effects) but time is running out & soon i will need a wig & will be too depressed to even shower. Grose but true. If anyone from Sydney, Australia reads this & knows a General Practicioner/Endocrinologist or Gyneocologist that will be MORE THAN HAPPY TO HELP by prescribing me Spironolactone without stringing me along & milking me for money, please let me know……… Ive run out of options.

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I am having my Iron & Zinc levels checked on Monday (Nov 9th)
I know people with CD have to watch for Anemia because of the inability to properly absorb vitmins & minerals due to damaged villi in the intestines.

I was diagnosed 2 years ago and my hair loss started to pick up after that. I too leave trails everywhere- people are always commenting- and I am not sure what’s causing it. I also have Raynaud’s Disease (common among Celiac’s-circulatory disease) as well as Adrenal Exhaustion.

So far I have lost 3/4 of my hair. It began in 2006.

My Thyroid tests are perfect.

Lovely to meet you all.:cool:

i have started to noticably lose my hair. My md had various tests done & determined my thyroid hormones were way off & my "testosterone" level was very low. He prescribed thyroid meds. but he also prescribed testosterone gel to be applied to my arm & dhea tablets!!!!! from what i am reading this is just about the worse thing i could be taking. Am i incorrect????

A year ago I went to a purported hair expert in NYC who is often mentioned on this site. I suspected/hoped I was one of those hormonally vulnerable women since all my labs come back normal inspite of the fact that I was losing 200+ hairs a day. He prescribed his typical…spiro & yaz…after a brief chat & glance at the labs I brought with me. I couldn’t wait to start the meds & stop my hair loss!

I was on that regimen for 7/8 months before my local endo (who tests me every 3/4 mos. to treat my hashimotos) told me that I was hyperkalemic (dangerously high potassium) & to get off the spiro asap. I did, but wasn’t too worried b/c my endo has never had any empathy re: my hair. I just thought they were being dramatic.

Today (6 weeks after stopping spiro) I am still dangerously hyperkalemic. My endo & pcp say get off the Yaz, too. I’m going in for another blood test in a couple of days & will probably be referred to a nephrologist. I may have permanent kidney damage! My pcp is telling me this is very serious. People have heart attacks, kidney failure, fall comatose & die because of hyperkalemia! I said I really feel fine! She says it can be asymptomatic. I can’t believe an ethical dr. would prescribe that dose of spiro/yaz & send someone off to have a heart attack or kidney failure & die!

By the way, after my first test came back showing hyperkalemia, my Houston dr. faxed my results to that renowned dr in NYC, I called him & emailed him. Not a word back! Love em & leave em (dead) must be the motto. I’m so angry. I have a small child & a life I love inspite of my hair status. Is this what I deserve just because I want to look like most other women WITH HAIR?!?!?!?

My crazy mixed up history is below. I Hate having to Face it all.
I also feel a HUGE amount of guilt for missing my hair .
I feel like if I do not have cancer & am losing my hair that
for some reason I should have nothing to complain about.

My history is quite complicated. I have Lupus , and it likes to "jump around" from one area to another on my body. I have undergone bladder biopsies & laser ablation for scarring , uterine biopsies with cervical ablation , I had scarring over several of my knuckles that looked like warts but were not , they itched broke open & bled , even getting so large as to prevent the thumb & 1 finger from bending. I also had sudden permanent deafness in my right ear about 16 yrs ago. Approx 10 years ago I became blind in my left eye & remained blind for over 3 years. I also had a heart attack around 10 yrs ago.

I had a small cyst on the back middle part of my scalp that appeared after nose surgery that lasted approx 6 hours. The cyst itched & would get to be the size of a grape then would re-absorb & disappear. the itch never disappeared , but the lesion would. My scalp would always get hot there if I walked outside , & would begin to sweat profusely & break out in hives. All of this with my scalp began when I was in my late 20’s & I am now 52.
What I now have on my scalp is a Giant Cyst / Lipoma/mixed tumor & it is at least the size of a boiled egg , or kiwi fruit. The top layers of it are hard , tough & leathery & feels like a callous. The skin on the sides of the sore are softer , tight due to the skin stretching , and have some hair. the new hair growth that comes in there is ingrown & sore .
The hair loss around the cyst /lipoma /mixed tumor extends up to the crown of the back of my head & to the backs of both ears.
What hair that I do have on my head would not be enough for a baby to make a ponytail with. There is some on the top of my head & a scant bit on the sides.
I look sort of like Driving Miss Daisy did at the end of the movie when she let down her hair on the staircase.

This tumor has been removed twice under general anesthesia. The 2nd time , I bled profusely & the surgery was more complicated than had been expected. It was not just a simple cyst , or a simple fatty tumor. It had a little bit of everything thrown into it. After the last surgery , it stayed somewhat raised over the area, & the surgeon told me that it would need a revision somewhere down the road , as some of my hair would be growing in underneath the suture. It stayed about the same size for years until I had oral surgery , my head flat on the back of a chair for a few hours & it became large again. It’s very slow growing , but has gotten larger.

It needs to be removed & I have had it scheduled 3 times , but twice due to my blood work it had to be cancelled for a later date. the first cancellation was because my ex-husband cancelled my health insurance policy.
I was ready to re-schedule and my husband was fired from his job & we had to cobra. But then he got hired by another scompany within 3 weeks , so we did not Cobra.
Problem …this last company kept telling him we were covered under their group policy. We had paperwork , etc. But they were not paying their premiums , & the insurance company told us yes you have a policy , but no you cannot use it until it is paid up . His boss assured him it would be paid up by Christmas.
It was not , It was cancelled & then he was fired.

So I have no insurance. I have just about lost all of my hair , and I feel mostly because this tumor is now so large .

I went to 2 dermatologists years ago here , and 1 froze off the sores on my knuckles told me it would throb a few mins. , but they throbbed for hours , sending my BP sky high to stroke level sending me to the ER It was nearly to the bone, you could see the nerves "Pulsing" . On a scale of 1 to 10 the pain was at a 10+
He denied any wrongdoings & said I was "seeking drugs".

I saw another dermatologist who said my problem with my skin over my knuckles & my cyst/ lipoma / mixed tumor were due to my "obsessive picking at the skin"
He said that my hair loss was due to my obsession with picking at my skin & pulling out my hair. I quickly told him how Wrong he was & he totally dismissed me & wanted to give me tranquilizers.
Oh , by the way , I took in some hair in a ziploc thinking they might want to see how much I had lost , or to view it under a microscope … I was asked "How long have you been collecting your hair in baggies". he wanted to know how many baggies of hair I had at home !!!! SO he thought I sat at home , picked at my skin , and pulled iout my hair collecting it in baggies. Lord , that visit was a HUGE letdown.

I saw a Rheumatologist when I was having a period of NOT having a flareup. For years with my Lupus , I did not look sick , so as a result , I was told I was not sick.
The doc I was sent to for Lupus , when I showed him my scalp & tumor , he just said that’s just a tiny cyst no big deal. When I asked about my hairloss , to him it was nothing significant. It has totally changed now though since it’s nearly all gone.

Since I do not have insurance I cannot afford to go to lots of doctor visits.
I had to see 13 (yes THIRTEEN) Opthalmologists before I located the asst head of the Corneal Division at UAB in Birmingham,AL. Finally he diagnosed me correctly & now I can see again.

No one ever knows what to do with my weird "orphan " like symptoms & problems.
I am afraid of going to a surgeon who says not to worry about the scar because I won’t ever have hair growing back there again. Well I do have new hair growth in spots , & as a woman every little bit means something!

Well I feel as if I have written my whole health history here in a jumbled up fashion.
I Hate talking about it , I hate explaining it , and I hate being embarassed by it.

Anyway , there , it’s out in the open here. My husband knows. My 2 girls know.
And now y’all know.
I am ashamed & I am embarassed by this.
I hide this from all of my friends, I have cut myself off from others, I now am just unavailable most of the time.
I am ashamed & embarassed.

Hi ,
Since SHEA Butter heals cracked hands & chapped skin , allergic breakouts , ,any irritating skin condition has anyone used it on their scalp ?

I saw a website where I can buy it direct from Africa pretty cheaply.

I just wondered if any of you have the problem of the sores on your scalp & hardening thickening of the scalp & if you had tried anything like pure shea butter? If so , what were your results?

thanks ! :p

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