Cysters without IR:

emmaviolet · 10-22-2008, 03:12 PM

I am interested to find out, of those cysters who are not Insulin Resistant, which of you had any of the following before being diagnosed with PCOS:

Use of the birth control pill – particularly those with high levels of synthetic progesterone
[It would be helpful to know which pill and what dosage of synthetic progesterone/estrogen it contained]

High levels of Growth Hormone, or acromegaly

Steroid Use

Hypothyroidism

Obesity

(I suspect that the last two are unlikely to apply to anyone in this forum, but I thought I’d include them in the interests of being through.)

I would also be equally, if not more, interested to know if anybody fits into none of the above categories.

Many thanks,

Emma Violet

melrosen · 10-30-2008, 07:45 PM

I do not have IR. In fact I was perfectly healthy until the age of 22 when I started taking the drug valproate or Depakote for bipolar disorder. I remained thin though not as super thin as I was. I did not find out about the cysts until trying to conceive. Then had IUI and metformin for my ds, then, because I was put back on the met, spontaneously conceived my dd. YAY!!! It seems I have a mild enough case where staying thin and staying on met keeps me ovulating and menstruating...

molly84 · 10-30-2008, 09:14 PM

Hi, I just got diagnosed two months ago. I am thin, BMI 21, and never had any problems until I started the pill 2 and a half years ago - Microgyon 30ed (I think also called Levlen??) which I only just found out has high androgenic qualities! My only symptoms are slightly high testosterone - was 3.1nmol when still on microgynon, but switched to yasmin a few months ago and now testosterone is down to 2.7. Also have cysts on ovaries (though ovaries are not enlarged) and darkish hair on upper lip and a few on chin. Hope that helps

Oh and I'm not IR, all my bloods are perfectly normal, even my LH: FSH ratio...

danado · 10-30-2008, 09:29 PM

Hi. I'm 30 and I was on the pill for 10+ years (Ortho Tri-cyclen). Sorry don't know the specs. I am 5'2" 105lbs. Went off the pill in Oct. 2007 in hopes of preparing to conceive last spring. Needless to say i found out that i have PCOS and the pills have been hiding it for who knows how long. I never had any menstrual probs prior to the pill and now i have long cycles, sometimes annovulatory, cysts, and i have to pluck daily. I don't have IR.

carliemarie16 · 11-02-2008, 12:51 AM

Hey!! I am non-IR, 5'8...129lbs...and I took Ortho-tri-cyclen for 7 years! I got off of them 3 years ago and ever since I have had PCOS! I have thought all along that my BC pills have caused this for me...I do not have the traditional PCOS...I am an odd-ball!

danado · 11-02-2008, 10:52 AM

carliemarie - I feel the same way. When i was first dx'd, and looked up pcos, i was like - that's not me. But the more i found out, i realized that everyone with pcos is different. I also blame the bcp's even though dr's keep saying there is no correlation. I feel that bcp's have been performing all the hormonal functions for my body for the past 10 years, I stopped taking them and now my body doesn't remember how to do it on its own., it may not be true, just my crazy way of thinking

katt_:) · 11-02-2008, 01:16 PM

This is scaring me more & more. Birth control pills are seriously screwing up our bodies. I never would have believed it until I lived the horror myself. I wonder what else they did to my body.

I had pcos long before I went on birth control, but I can say they worsened the problem 200%. I wonder if there is some retribution for us from the drug companies and drs pushing them to treat women with pcos (especially thin pcos). I almost feel like a victim of stupidity!!!

Tummy · 11-03-2008, 03:28 PM

I'm a thin, non-IR cyster. Unlike many of you, I don't feel at all like BCPs caused PCOS for me, I feel like they just masked my symptoms until I went off them and didn't menstruate on my own. I was on different ones, most recently Ortho Novum. I don't have any outward signs of PCOS (no hair growth, no acne, etc). My androgen levels are normal.

As for your list, the only one I have is hypothyroidism. My father and sister both have it as well, and neither of them have PCOS, so I believe it is unrelated in my case.

itsonlyme · 11-03-2008, 04:19 PM

i think it's great how we each have our own "recipe" that ends with us developing PCOS, here is mine.

i was obese until i was about 15, got my first period when i was 11... and it was as regular as a young girls could be.
at 16 i developed anorexia and i went from over 250 lbs. down to 89 lbs and almost dead by the time i was 18.
when i dropped below 125 then was when i completely stopped getting my period.
i was with out it for at least 2-3 years.
when i did get my period again, i had gotten physically healthier. shortly there after i started BCP, i started with the patch then switched to orth tri cyclene.
i was on BCP for almost 2 years, but i hated the side effects so i stopped.

this is when my period went AWOL for no other apparent reason, and soon after i was Dx.

i am now 29, 5'9 and i weigh about 138, i am currently going on 170 days with out a period. i do not take meds or anything.

i think my PCOS developed because i was so emaciated, i think i really messed up how hormones work and function, as i am sure they had already been shutting down because i was too thin.

although it maybe a combination of factors i know for sure that my eating disorder cause much of it.... and that is two eating disorders- binge eating which got me obese in the first place and the total opposite- anorexia.

my symptoms are some chin hairs, cystic ovaries, and lack of periods

Tummy · 11-03-2008, 05:03 PM

Interesting ... I also had a borderline eating disorder and weighed about 90 lbs throughout high school. One "expert" on thin cysters says that's pretty common in thin cysters -- to have at one time been way under weight for height, which may have been the initiating event to throw off our hormones.

Snow · 11-05-2008, 12:48 PM

This is interesting about the being underweight causing periods to stop and therefore contributing to PCOS. My mum had PCOS so I had heard of it before I was dx. I started my periods at 12, to be honest I can't remember how regular they were, but they were always there every few weeks of so. When I turned 18 I was really big into partying and had some pretty bad eating habits, but not an actual disorder with food. I was always slim as I did ballet and was into a lot of sports but ended up underweight due to too much partying. My periods stopped and after 9 months without one the doctor dx me with PCOS, gave me provera and I started BCP.

I stopped BCP once when I was 24 for 5 months and didn't have a period until I went back on BCP. I stopped again after 5 months and my periods came back pretty regular for 4/5 months which was great and a surprise. I then went back on BCP and then Nuvaring for the last 2 years until november last year and had no period until recently after stopping. So I'm a bit unsure of whether BCP has made the problem worse or not.

By the way my symptoms are: no period, acne, not tested for IR, no cysts (the odd one now and again), haven't found a dr yet who will retest me or see it as a problem!

Tui · 11-19-2008, 01:08 AM

I'm quite thin and tall - 180 cms (I believe that's 5' 11") and 63 kgs (sorry not sure about lbs). I never measured my growth hormone, but it could be elevated, who knows.

Apart from that I've been diagnosed with PCOS recently, but I get periods every month, I'm pretty sure I ovulate most, I'm non IR. I have elevated testosterone (around 4.5) and my LHS:FH are 3:1. I've always been on the hairy side, but I've got olive skin and dark hair. A few hairs on my chin that I pluck. I also have poly No other disorders that I know of.

I'm a little bit confused given most people on this site do not get periods or ovulate on their own. I had erratic cycles until the age of 27-28 (I'm 32 now). Then all of a sudden they regulated themselves. The only thing I can attribute this to is the fact that I gained some weight and went into a normal range (rather than being underweight). So I'm at a bit of a loss but of course still stressing out that I won't be able to get pregnant.

vici0us_allure · 11-19-2008, 03:23 AM

Hello everyone. Just the threat I'm looking for I think. I have a question for anyone who wishes to answer lol. How exactly do you know your IR? I was just diagnosed 5 days ago, I'm a little confused how you "know". I've had the general blood tests done for hormones & so on, but my gyno never mentioned anything about IR or even close to it.. I'm familiar with PCOS as I've suspected I've had it for about 4 months now, Just still a bit confused about IR & how to know.

Any help?

MissSugarSkull · 11-20-2008, 06:09 AM

Quote:

Originally Posted by vici0us_allure

Hello everyone. Just the threat I'm looking for I think. I have a question for anyone who wishes to answer lol. How exactly do you know your IR? I was just diagnosed 5 days ago, I'm a little confused how you "know". I've had the general blood tests done for hormones & so on, but my gyno never mentioned anything about IR or even close to it.. I'm familiar with PCOS as I've suspected I've had it for about 4 months now, Just still a bit confused about IR & how to know.

Any help?

You need to have glucose tolerance test and blood insulin levels checked to know if you are or not Insulin Resistant. Glucose tolerance test is where they take your fasting blood sugar, then you drink this glucose drink and they measure your blood levels of sugar and insulin after 1 hour and after 2 hours.

I had that done, but unfortunately due to my doctor obviously not being familiar with the whole PCOS thing, didn't take my insulin levels so it was totally useless. You can't relay on the blood sugar levels only, as they might show normal but the insulin might be abnormally high and that tells you that your body produces excessive amounts of insulin in order to lower you blood sugar level.