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Re: SEVERE SEVERE PCOS...why so bad??? who else has it severe?
From: Alina (anonymous@obgyn.net)
Thu, 20 Jul 2000 09:27:28 -0500 (CDT)
I'm sorry to hear about what you've been through. I know other cysters
who have it not as badly as I do, but many who have it worse, and I can
only imagine what you go through, considering my lot bad enough. One
thing that came to mind while I was reading your post was a memory of
recently hearing that some PCOS is related to a condition called
acromegaly. Perhaps this is what your doctor tested for in all the
stuff he ran -- I don't know -- but I wonder if it might be worth
bringing to his attention (if he doesn't know already) that acromegaly
has been linked to PCOS. I have slight masculinization of my facial
features, chiefly a prominent bone structure. And I am also tall --
nearly 5'10". Now, there is also height in my family, but I wonder how
many cysters tend to be quiet tall???
Take care -- Alina
At Thu, 20 Jul 2000, paula wrote:
>
>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!
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