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PCOS or not?

Discussion in 'PCOS Community' started by sadie_2008, May 20, 2008.

  1. sadie_2008

    sadie_2008 Guest

    Hi Ladies,

    I wanted to ask if you'd think my "symptoms" are PCOS related. Long synopsis follows :$

    When i was 26 (now 30) i gained a stone in weight within a couple of months, got boils on my face (never had zits ever) and my temple hair began to thin. I went to the docs and on the basis of a blood test i was told i had cycstic ovaries and got given dianette - which i refused to take. I then asked for an ultrasound to confirm the PCOS.

    Gradually i lost the weight through exercise over the next 1-2 years. I started on various medications for the acne including oxytetracycline and minocin. My acne is light now but the skin isnt particularly great and if i stop the oxytera then it'll come back. The acne and weight were the least of my problems.

    Fast forward to 2008 and i have lost a good 60% of my hair density and it has thinned overall. My bangs are non-existant. I have tried dianette for this (made it worse) and currently use Regaine 5% (no joy) and then various stuff like Saw Palmetto, indian massage oils, Nourkrin, boosted iron levels etc etc etc.

    I wanted to ask this. My first ultrasound in 04 showed that one ovary was enlarged compared with the other, and that i had "pearl like" cysts on my ovaries. Last year i had an ultrasound too, and it showed the same.

    I'm a little confused because i feel like my acne is under control but my hair isnt. I'm within my weight range now (though i do exercise 3-4 times a week and eat little to maintain this).

    Does the above sound like i have PCOS to you girls? My hormone levels are ALL within range, and i've had all my bloodwork done at least every 6 months over the last few years. Nothing is alarming from my bloodword. The Derms/Endos/Trichols i have seen said my hair loss cant be down to elevated T levels but that the loss i am displaying is characteristically that of a menopausal woman.

    I am none the wiser 5 years on as to whether i have full blown PCOS and why i have thinned so dramatically in my late 20's. I mean if i could attribute the hair loss down to something then perhaps i could "treat" it, but i havent been able to and neither have the so-called "experts. :lost:
  2. michelesmith

    michelesmith Guest

    without any of the other symptons cystic ovarys is PCOS that is usually the main thing and the hair loss etc is the joys that could or could not come with it, you need to see an endocronologist or gyn who specializes in this theres different meds for it-
  3. sadie_2008

    sadie_2008 Guest

    I ask this because i have heard of females having cysts on their ovaries but only one symptom so they've been told it isnt PCO "Syndrome" but just cystic ovaries which doesnt mean much (according to their GP's) cos many females have cysts on their ovaries and dont know it cos of the few or zero symptoms. This is why i ask the question...but then i know for me that i have the hair loss and mild acne so...dunno. Just a tad confused that given my symptoms are not as bad as others (i mean hair loss being the devastating one), that i wonder if PCOS is the culprit here. Also, my hormones are all fine and PCOS females, apparently, have high T levels.
  4. dying curls

    dying curls Guest

    if you have cystic ovaries plus hair loss it's definetely PCOS and you should have taken the dianette...
    Plus they told you that from your blood tests , meaning you certainly had androgens above the normal range..at the time there was scarcely no doubt that it was PCOS.

    You seemed to have eveinced many PCOS symptoms...cystic acne (even if at one point you get rid of it does not mean your PCOS dissapear), weight issues, hair loss..blood test that confirm this..you dont need more to know the culprit...
    Every woman has her own form of PCOS...
    I have PCOS yet i am very skinny never has ACne apart from an episode at 24 (so you see...) but the hair loss is my first symptom, and the one that is more hard to get ride off.
  5. sadie_2008

    sadie_2008 Guest

    Hi. I did eventually take dianette. Once in ealry 2007 (for acne rather than hair loss). I took it for one month and quit cos of the hair loss scare. However, upon quitting a few months later my hair drastically thinned further. But i attributed this to surgery i had unrelated to PCOS. Then in October 07 i took Dianette for 3 months for my hair. After one month of taking dianette my hair began thinning rapidly on the crown. I re-visited my Derm at the 2.5 month mark and he told me he agreed there was a visible thinning further around the Crown area and said it's upto me if i wanted to come off Dianette cos his view was that it helped hair loss (!)

    Since quitting in December 07, even further thinning. So, there would have come a point when i'd have to have come off dianette and im glad i got rid of it sooner. It never helped my hair but made it worse on it, and even worse off it.

    Perhaps it helps some people.

    I must stress though, that since 2005 my hormone levels are ALL fine, and i thought women with PCOS had high T levels. I dont have this which is what baffles me, and my Derm who doesnt think its PCOS hair loss but then again, cant say WHAT it is.

    This is why i'm still confused :sobbing:
  6. dying curls

    dying curls Guest

    well three month on dianette is not enough to see result...As for anything that mess up with your hair you can go through a dread shed before it gets better....
    There are also other treatment out there for PCOS. GO and see and endo not a derm to treat your PCOS , it's a syndrom that can cause many problems. You have to be in the hand of a serious doctor who knows his job.If you had stayed on the dianette longer you might have seen improvement envetually if not you should have tried another pill like jasmin...or something different there must be at least 4 or 5 different option for PCOS.you ll find one that will fit you..
  7. Rainbird984

    Rainbird984 Guest

    PCOS is really strange, it seems to manifest itself totally differently in each person who has it.

    My hormone levels have all been pretty much within range too, my T was a little high for a while, but only slightly; and they've been totally normal for several years now.

    So yeah, it's definitely possible to have PCOS but normal T, the way they figured out I had PCOS was because my LH/FSH ratio was totally out of whack in a PCOS-style pattern.

    I'd 2nd going to an endo, they can give you the best total picture of what you need to do. Best of luck, hopefully someone on here is close to your area and can point you in the way of a good one...
  8. dying curls

    dying curls Guest

    yeah normal T, even if rarely, can also go in hand with PCOS ..you might have other hormones in a whack..and you said your self at one point that you T was high...with PCOS your hormones are never stable and change a lot it can be for the worse or for the better...
    unfortunaltey with hair loss once the worse triggers the hair loss it is harder to fast reward..
  9. sadie_2008

    sadie_2008 Guest

    Hmmm so high T in 2003/04 and normal ever since the end of 04 (4 years ago almost) could have triggered the key for menopausal hair loss you think? I dunno...none of my so-called hair "specialists" said it's hormonal, but did say, as typically as they do, that i probably have a sensitivity to androgens hence the mild adult acne.

    I should have mentioned i also have high thyroid antibodies, and despite going to THREE speciallists i have been told that they alone dont cause antibodies as my TSH reading remains "stable".

    I've spent thousands of pounds on my bloody hair causes. Am so sick of it cos am none the wiser.
  10. dying curls

    dying curls Guest

    ok to put it blently you had a very high T at one point, your doctor took blood sample and they said it was PCOS.
    You've experienced hair loss and adult acne.
    You have PCOS.
    you are still sensitive to androgens even with a lower T level...

    PCOS never goes away.IT can go through time of "remission" but is likely to come back after.
    And to make it simple..if you have hair loss dues to previous HIgh level of androgens it's not an early onset of menauposal hairloss...it's just Androgenetic Alopecia..you might have developped it after menaupose but hair loss is not only specific to menaupose.

    to me you should find a way to treat your PCOS, T is not the only hormones that plays a part in it far from it...

    to treat your hair loss you ve got to find the culprit..
    go see and endo with the labs you had of elevated T, tell him you had ane, hair loss and weight issue at one point, that you still need to get rid of the hair issue..and you will see.
    do some PCOS research, it's a syndrome not just an transiant problem...though there are some exeptions.
  11. Nikoletta

    Nikoletta Guest

    Ok i am confused i thought in pcos you only get acne and hair loss if your testosterone is high?
  12. angieangie

    angieangie Guest

    Ohh, you get a lot more than that. There excess body hair, weight gain, insulin resistance, irritability, annoying ingrown hairs... and more!
  13. dying curls

    dying curls Guest

    angie is right...
    and also even if your T is high you don necessarily gets those symptoms..i never had acne for example..and none of my friends with PCOS have hair loss...my sister does not have acne or hair loss or unwanted hair..she is completely asymptomatic. she just developped a couple of chin hair recently...she is 33.and her bosy hair are very sparse and light yet she is a brunette like me.
    The first symptoms of pcos is irregular period i always was like a clock so was my sister...

    then some women who are extremely sensitive to androgens can get PCOS symptoms without having actual pcos.
  14. dying curls

    dying curls Guest

    also it depends on your genetic predisposition...a doctor told me once a very fair sentence..there are as many form of PCOS as women with it.

    but yeah generally if you testosterone isnt high you wont get pcos symptoms unless you are predisposed to it...
  15. sadie_2008

    sadie_2008 Guest

    Right - am baffled now! My T isnt high, and hasnt been since 2004. My periods have ALWAYS been well timed like clockwork. The acne has gone away with antibiotics i.e. not androgen suppresors but bacteria suppressors. So, what's to say my hair loss is cos of PCOS!?

  16. dying curls

    dying curls Guest

    I have a friend with pcos who alo use antibiotic for her acne and it works..because it is a treatment that dries also the skin, the antibiotic treatment with have for ace in france is strong and not without risk either.but the bcp works too.
    If you T was hogh at one point it means you have an unstable hormonal system and maybe you T was high several time in your life without you knowing it...hormones levels changes all the time, especially in women who are cyclic.

    you said yourself you had acne, some unwanted hair and hairloss..if this is not pcos it looks like it a lot, then i would say androgen sensivity ..which is like a pcos tendency..
    I too neverhad any irregular period problem yet i have pcos and started to take the pill because of this not because of sex..yet i was always like a clock and so is my sister who has pcos as well n and is asymptomatic.
  17. Nikoletta

    Nikoletta Guest

    What kind of acne treatment did you use? I hope not accutane!
  18. dying curls

    dying curls Guest

    accutane is the treatment my pcos friend with acne used...and it has been found to have bad side effect in france...i guess in the US too.;
  19. Nikoletta

    Nikoletta Guest

    accutane is the treatment my pcos friend with acne used...and it has been found to have bad side effect in france...i guess in the US too.;[/quote:3cfsqnkd]
    DC i read everywhere that it starts horrible shedding in many people and doesn't stop.
    Also in cases of genetically predisposed it will reveal Androgenetic Alopecia much quicker.
    Not worth it!
  20. dying curls

    dying curls Guest

    my pcos friend who used it does nto have Androgenetic Alopecia...but a really bad greasy and acneic skin from pcos..though sometimes she does not sometimes she has...and yeah she told me of other side effects accutane had...it was not shedding though, somehting else.;

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