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Questions about PCOS

Discussion in 'PCOS Community' started by joan, Dec 21, 2010.

  1. joan

    joan Guest

    I have a few questions and i hope people will respond. I am so confused, I need some advice.

    My hair started falling out this year at a rapid pace. I have lost almost 60% of it now - just over the past 9 months.

    At the same time I developed seborrheic dermatitis. SO now, I have oily skin, acne, and hair loss.

    I have been extremly stress out and have lost 23 pounds since 1/10.

    Anyway, after multiple test and several doctos - some things are looking off.

    My hormones at first were all normal. now they are not.

    My androstendione is slightly elevated at 3.2 (range .5-3.1)
    My testosterone was 31 (range 20-80) but now iis a 51
    and my DHEAS is slightly elevated 242 (range goes up to 220)

    All my doctors say that my hormones are not too concerning because they are not too elevated. However, I am having all these symptoms.

    I had a nultr sound in august that came back perfect and one yesterday. My doctor stated that I may have a polycysitc ovary because I had 6 follicle in it and I was on my period. However, no diagnoses.

    Anyway, I went for a glucose tolernace test and waiting for results.

    I am very thin 5'8- 122 pounds. My doctors want me to go on birthcontrol. However, I am scared because I have read that this can make PCOS worse. Additionally, I am 40 years old and have never had a problem - ever. Can PCOS start at this age?

    SO, has anyone had any success with birthcontrol and hairloss w/PCOS? Please help! Oh - I am on spironolactone (50mg) for 2 months. No change in hair but less oil on face.
  2. kimm

    kimm Guest

    HI there -

    I'm also of a normal weight and have PCOS. I became aware of it when after going on a highly androgenic bcp, my testosterone shot through the roof and my hair flew out of my head.

    Prior to that I was having facial hair symptoms, but the doctors didn't understand why because my androgen always came back "normal"

    I think every woman has a personal "normal". I went through a major thinning episode a couple years ago and tests revealed that my testosterone went up, but was still in "normal" range. I've found that if I can get to the lower end of that range, then my hair loss and facial hair, slow way down.

    Even if your glucose tolerance test comes back normal (mine always does) you still might want to look into an insulin sensitizer like Metformin. I'm on a brand name one called Fortamet, and I really think it's been a life saver for me. It helped me to get my testosterone down to a better level for my body. Doctors disagree, but studies have shown that even women with pcos who don't test positive for insulin resistance sometimes find benefit from a medication like this.

    You can also try bcps. Just make sure it's a low androgen one. I personally haven't had luck with any yet, but I gave up after my third try many years ago.

    You can also try a number of antiandrogens. Some examples are Spironolactone, Flutamide, Finasteride. (depending on how comfortable you are with this route)

    Good luck. This can be treated. We're here for support and if you have any other questions!
  3. joan

    joan Guest

    Hi, Thanks for responding. Was your testosterone higher than mine or about the same? Also, have you ever had any regrowth? I am getting a bit concerned as i have not read any posts, anywhere, where someone with PCOS had successful hair regrowth on BCP. Additionally, how did you get your doctor to put you on an insulin med when you came back normal? I don't think mine will do that.
  4. kimm

    kimm Guest

    Got a year for my story? lol!

    Try Soulcysters.com in addition to this site. Lots of info there too.

    I've heard varied reports on bcps and hair recovery. Everyone is different, so even though a bcp helps in one person, it doesn't in a different person. I HAVE heard success stories though, so they are out there.

    I've been able to regrow hair. I've also been knowingly battling hair loss for 10 years now. It started when I was 27 and I'm 37 now. I went through periods where my hair got to about 50-60 percent loss (my observation/estimate). I got enough back where I feel comfortable with where it's at again. Not 100 percent, but nobody would look at me and think I dealt with this issue. That's all I hoped for when things got bad for me.

    The Fortamet thing also took the entire 10 years to find a doctor who believed in treating with this med. I still run into more doctors who don't think I should be on it, than do. I finally found a couple docs who were savvy in this route of treatment. The problem is that even though a ton of women have PCOS there are varying beliefs on how it should or should not be treated.

    It takes some trial and error and a lot of patience. Hang in there. I'm here for any questions. I'm also not on every day so feel free to PM me as well. Not an expert, but have been actively working on this for 10 years now. The hair loss is the worst symptom for me. I can deal with everything else.
  5. Kay777

    Kay777 Guest

    just wanted to throw in that i'm in the same boat--underweight and living with PCOS. i don't know as much as some of the other folks on here about PCOS since i was just diagnosed about a month ago, but i wanted to show my support nonetheless!
  6. joan

    joan Guest

    Have either of you tried birth control for hair loss? if so, did it help, make it worse, or stay the same? Also....

    I had my glucose tol. test done. They only tested my insulin before the test. I have read that that should test both the glucose and insulin throughout the test. Anyone have any experince with this?

    I'm so scared to take BCP - I fear it will make my hair worse and throw off my hormones again.
  7. Kay777

    Kay777 Guest

    i was on the wrong BCP for a while--alesse for 3 months. it's a high androgen index pill, but no one warned me about this at the time. i'm assuming that that's what made me experience a TE, but it also could have simply been the fact that i was messing with my hormones at all. i'm not sure what would have happened had i just taken yaz (a hair friendly pill).

    i deeply regret having taken the high androgen pill. i don't think that hair will be coming back. i lost probably 40% of my hair on the top.
  8. ccarbaja

    ccarbaja Guest

    I too was just dx with PCOS about 2 months ago but suspected I had it for while. I was able to lower my testosterone levels a little bit with d chiro inositol but not enough to make a difference with the hair...still shedding, its very noticeable now. I am also thin 5'6" 118lbs. My doctor gave me metformin and yaz which I haven't started yet in an attempt to treat this naturally but the natural route hasn't been working. I will start w Met next week and then introduce the yaz a couple months later. I will let u know the results I see once I start the yaz.

    Kimm, how long were you on the fortamet before you started noticing results?
  9. dying curls

    dying curls Guest

    Hi there,
    the first time i got tested for PCOS all my androgens, except testosterone, came at the very lowest of the normal range. My testosterone was ver ver ver slightly elevated. I had no "real" PCOS symptoms but suspected something was up with my hair and the couple of facial hair i developped that weren't there before.

    I begged the doctor for an echography but she said "no you are too skinny too have a "real" hormonal imbalance, the figures are too weak". She put me on an antiandrogenic pill all the same but I had to beg her and told her i was growing hair everywhere. After one year she said "go off it you dont need it"...I did it...and my PCOS symptmes, my androgens (all of them this time) went full blown...I knew I had PCOS all along but the doctor did not want to listen to me....

    Weirdly enough every time i was off treatment for PCOS, I lost weight... I went from 46 kilos to 42 kilos (from 105 lbs to 90 lbs)...yet I kept eating junk food cause I craved them and was always hungry...

    If you have cysts plus an androgen that is slightly elevated you may begin to developp PCOS (It can strike at any age contrary to what many people think...)

    My sister has PCOS too, all her androgens are in range except a very slightly elevated testosterone and she has no symptoms of PCOS (well her armpits hair grow faster now than when she was younger!). She was diagnosed at 32 year old and is about to go through her 4 IVF.She has already been pregant but she was 27 and prolly PCOS was still dormant in her at that time.

    So yeah you don't need a big imbalance to disturb the delicate hormonal system of a woman.

    The glucose tolerance test is not really useful. Many people who are insulin resistant have a normal glucose tolerant test and not all PCOS women are insulin resistant.
  10. dying curls

    dying curls Guest

    If they give you a hair friendly BCP things should get better, your skin, hair, scalp ....In some cases the BCP is not enough (especially for the hair, the skin is easier to take care of) and you need to add Spironolactone to the mix. So you will have to watch your hair carefully to see if things are getting better.

    If you have PCOS, your doctor should give you a hair friendly pill that will balance out your hormones. Be sure it's a hair friendly pill though we never know.
  11. Kay777

    Kay777 Guest

    i just wanted to add that you might want to take your periods into account when considering BCPs. i have always had normal periods EXCEPT when i was on BCPs. i could not tolerate pills with a medium amount of estrogen, and low-estrogen pills made me bleed/spot for about 2.5 weeks out of the month for the 4 months i was on them. once i stopped BCPs, my periods went back to normal. this is one reason i am disinclined to start up with BCPs again.
  12. joan

    joan Guest

    dying curls ,

    what do you mean your PCOS went full blown? What happened? I am totally freaked out - I have been sprionlactone for a few months and my levels have been going up. A few are slightly elevated and my doctors keep dismising them. I too have had some chin hair growth and body hair growth - nothing too bad yet. I fear there is more to come...is there? Also, when you say you loose weight when you get off treatments - what treatments are you talaking about? I fear that if I go on this pill I will make this condition worse. I am so scared and feel ugly with my thin thin hair, oily skin, acne. I am not doing well emotionally.
  13. dying curls

    dying curls Guest

    Normally spironolactone help your androgens to be balanced, but here in France you cannot take it alone you have to take it along with a BCP or some kind of "natural" oestrogens because apparently it can also have an effect on oestrogens.

    What I mean by my PCOS symptoms went full blown is that at first, iprolly had PCOS, but since my imbalance was light my symptoms ( a couple of chin hair and very very very progressive hair loss, so progressive it took me years to realize it and people told me i was crazy) went unoticed by the doctors and me. I never had acne, I ve always had a dry and clear skin, I am considered "underweight" , always had very regular cycle ect. I think my symptoms developped with age, I dont think the fact I took the BCP in between contributed to my symptoms getting worse after, actually when I started on the BCP my sysmptoms were already starting to get worse and I think I would have a wig now if it was not for my PCOS treatment. The first time I was treated my hair even grew back (but i realised it too late cause i was not sure i lost hair at the time, and i had no clue of the way an antiandrogen worked, i just did what the doctor told me) and was getting thicker and thicker.

    All my friends with PCOS are better when on a bcp, all of their symptoms disappear (headaches, pelvic pain, acne, oily skin, mood swing, heavy periods or irregular periods...) ...i am the only one who has hair loss though.

    Your symptoms can worsen if your androgens continue to go up...and it is possible. For me it was the case as I prolly had PCOS since my teen years but only around age 24 did things started to get real bad...So yeah your pilosity can increase along with the increase in androgens...but it depends on the person and her gene. You can take two PCOS girls with the same androgens levels one will be hairy and the other wont be because her hair follicle on her body are less androgen sensitive. In my case I never had hair on my belly or my upper arms or lower back until i was 24 and started to get a "fuzz" here and there...the doctor said it was nothing but i know that "fuzz" was not there before and it dissappeared once my hormones were balanced.

    I lost hair when i went off treatment and also the few month before starting it, when my pcos started to get more "straightforward"...the weight loss is not due to the treatment at all but rather to PCOS. Normally with PCOS you have a tendency to weight gain but apparently in some cases the contrary can happane...i read an article about that somewhere, i an't say for sure but since PCOS is linked to insuline it is possible that when you eat carbohydrates your body dont use the energy of the food and then uses your fat cells to compensate and that process can make you loose weight..some type 2 diabetic people can experience it also...strange but apparently not impossible.

    The treatment i am talking about is a classic PCOS treatment here : BCP+an anti androgen (10 days a month). Other girls will have only a BCP. Three years ago I switched to natural oestrogens plus an antiandrogen. Different combinations are possible. I will prolly change soon for a BPC with natural oestrogens and an anti androgen 5/10 days a month.

    Spironolactone alone is not really a good idea but i guess your doctor know what they do.
  14. joan

    joan Guest

    I don't understand...don't you need to take progesterone if you are taking estrogen? How can you only take estrogen and an anti-androgen?
  15. dying curls

    dying curls Guest

    natural oestrogens and the antiandrogene like spironolactone or androcur taken together for 20 days a month work the same way as a contraceptive pill, instead of one pill you have two to make one.
    those antoandrogen acts like progestative.

    Spironolactone alone is like taking a progestative alone without the oestrogens, that's why i dont understand why your doctor only put you on Spironolactone alone, but i ve heard it before so i guess i can be done.

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