|
Re: SEVERE SEVERE PCOS...why so bad??? who else has it severe?
From: paula (anonymous@obgyn.net)
Thu, 20 Jul 2000 08:44:46 -0500 (CDT)
well other than the amount of weight, i am there with you. the
difference is, i only reached 200lbs overweight. i have the black
patches, my insulin was 42 fasting...on and on and on. i am not
disabled, but only because i am still young and force myself to walk
through the pain. my joints hurt so bad sometimes i cant get out of
bed. due to the weight of course.
i hope that you get the treatment you need. have you low-carbed? are
you on glucophage/met?
love,paula
At Wed, 19 Jul 2000, anonymous wrote:
>
>I had more tests for LOCAH. Late onset adrenal hyperplasia. My doctor
>has told me my PCOS is so severe as to be related to adrenals but all
>tests related to adrenal tumors, hyperplasia have turned up negative.He
>told me today....You just have very SEVERE SEVERE PCOS! Hes tested
>everything in the book possible from prolactin levels, insulin, ACTH,
>17-OHP, urine tests etc. It seems my adrenals are pumping out tons of
>hormones but it doesnt seem related to cushings or hyperplasia though he
>told me since we didnt find any adnemoas...adrenal tumors or
>enlargements...and results of adrenal hormone tests yes more that its
>simply severe PCOS!
>I guess I was shocked by this one one hand...but he did every test he
>could and it does always point to PCOS.
>I have the high androgens of course, high insulin--it was 24, high
>prolactin, high DHEA, high adrenal output. But every test for
>everything else turned out negative though I had low borderline cortisol
>that ended up not being anything.
>The reason I am freaking out is because for so many this disease just
>seems to be a matter of a hairy face or trying to get pregnant. I feel
>like my own experience is so different...this disease DISABLED ME! I
>have yet to see anyone disabled by PCOS. I must have made some sort of
>record. I have the worse PCOS in the world. Trust me!
>I dont want to turn this into a comparison game....but I do feel like I
>am in a league of my own so to speak. Im almost 200lbs heavier than the
>largest PCOSers here. I do get bald spots on the top of my head. My
>health is bad. Its getting better and I am healing but I am just
>dumbfounded. how could someone gain this much weight---I had a good
>steady weight for over 12 years before the gain and be covered in brown
>black spots and all the rest of it and not have an adrenal disease??? I
>trust my doctor, he is very intelligent but this surprised me today!
>
>When Iw as 21 and still thin....I had my massive weight gain of over
>340lbs when I was 26-27....I lost my periods forever at age 21! They had
>been irregular before hand. I also had my neck turn black and my elbows
>and other parts of my body that same year..this was before any weight
>gain. Five years later I just didnt know what I was in for!. I do know
>when I lost the periods my weight was harder to lose and control though
>I didnt lose control of it until the gain began 5 years later probably
>with the help of my failed thyroid. Ive lost weight down from the 630lb
>peak but thyroid pills helped that! and aldactone is now.....but I am
>kind of just like thinking how could PCOS Be so extreme. You all must
>remember i have gotten tested for cushings......everything to explain
>crazy symptons of severe anxiety. severe weight gain. Brown blotches
>all over my body, thights, neck, underarms sides,hair loss and hairyness
>in other parts, no periods unless forced by pill. I also was very
>masculine growing up. from the testosterone more aggressive than other
>girls. Even yesterday I had a mammogram and the tech pointed out kindly
>I had the largest arm muscle she had ever seen on a woman! Im a 480lb
>disabled woman/6 feet tall. I had huge muscles when I was young and was
>far more masculine in appearance until I got on the pill around age 25
>or so. I am 6 feet tall and wear a size 12 shoe. I also have very long
>arms and legs. I am big even when I am thin.
>
>I guess I feel like I am beyond the pale when it comes to this disease.
>Trust me every hormone test has borne out PCOS in its most severe form.
>I am also hypothyroid.
>I am doing my best to lose weight but I do know PCOS led to me getting
>this fat in the first place. My body is messed up and I guess when I
>read posts on here about women trying to have babies-__FOR THOSE OF YOU
>WHO WANT TO BE PREGANT be grateful you are healthy enough to even think
>of it!...I cant even dream of that...My PCOS is too serious to even
>dream of having a baby...or taking care of one.--and overall health.
>Theres some sites I avoid because all they do is talk about this disease
>as one of fertility. To me thats the last problem on the list! My doc
>said I am infertile and told me he was worried for me but I told him I
>had already warned my husband years ago because of my health problems. I
>ended up disabled from this disease. I sometimes feel like I am the
>worst case possible. I do know of two people who approach me in the
>effects but still....I am just taking this all in.
>
>I can say Aldactone has helped me considerably. This is ending up to a
>miracle drug too along the lines of thyroid pills!Synthroid
>
>Im just venting here because this has been one long frustrating road. If
>youve read this far thanks!
|
|
![[ PCOS Discussion Forums ]](../../images/pcos_at_obgyn.gif)