Cases of Women Diagnosed with PCOS who got a Cushings Diagnosis Later

Cushing's syndrome in women with polycystic ovaries and hyperandrogenism

 

"How might polycystic ovarian syndrome and Cushing's syndrome be distinguished?

The menstrual cycle of individuals with PCOS is likely to have always tended towards irregularity (the amenorrhea in this case developed after years of a regular cycle).¹ The onset of PCOS is uncommon after the age of 30 years. Both PCOS and Cushing's syndrome are associated with obesity, an increased risk of hypertension and impaired glucose tolerance or secondary diabetes.^{4, 7, 9} Clinical and/or biochemical hyperandrogenism with menstrual infrequency is found commonly in women with Cushing's syndrome. In fact, there are data to suggest that menstrual irregularity is linked to the level of glucocorticoid excess rather than to androgen levels.⁷ Ovarian cysts are certainly not discriminatory; they are present in almost half of women with Cushing's syndrome.¹² It is also noteworthy that cysts, in isolation, do not predict the development of PCOS;¹³ furthermore, whereas imaging the ovaries can help to exclude a tumor, our experience would suggest that identifying cysts either laparoscopically or by ultrasound scanning can inappropriately curtail the search for alternative causes of clinical and/or biochemical hyperandrogenism.

Virilization in PCOS, characterized by a deepened voice or clitoromegaly, is highly unusual and more in keeping with an androgen-secreting tumor (none of the cases illustrated in Table 2 experienced virilization).⁷ Other clinical features lend support to the diagnosis of Cushing's syndrome, but these can be absent, especially in the early phases of cortisol excess.⁹ Biochemically, relative luteinizing hormone excess has been reported in patients with PCOS,¹⁴ whereas low gonadotropin levels might increase the suspicion of Cushing's syndrome (as in Case D in Table 1, who presented with primary amenorrhea).¹² None of these features is absolute, the overlap between syndromes is large and, thus, screening tests are needed to exclude Cushing's syndrome (Table 3).

I'm being tested for out and out Cushings now.

Remember this entry...

Pursuing an Out and Out Cushings Diagnosis?

They are doing a Urine Free Cortisol check. I took in the records [some even from years ago] where I was diagnosed with the high cortisols and told them how the doctors then considered me as having pseudo Cushings but severe PCOS too. The endocrinologist seemed very knowledgeable. I told him how I was unable to get a pituitary MRI. I think they are paying MORE attention now because of the insane kidney stones and I told them I literally got handfuls of these things. I had a high ACTH which is a marker for Cushings years ago. I hope they can get somewhere. I am getting so sick. So much fatigue I can't even explain it all to you. I'm in bed now by the way. I told him I have felt exhausted. If answers came after this many years it would be nice. He told me my parathyroid levels are normal now and does not see my low Vit D as a present parathyroid issues. My body is so tore up. They have ordered me lymphedema care at home and some occupational therapy too, it is getting harder for me to get tasks done, I am not sure if it's the fatigue, bad balance or what. I am not keeping up. Oh one thing he brought up, is wondering where all my severe lymphedema has come from. That puzzled him. Oh if only I could get more answers after all these years. I know I am not going to last long at this weight. My weight was 519, 5 days ago it was 513, three months ago 486. It always frightens me.

I know there are many women diagnosed with PCOS who find out it is actually Cushings, maybe a few have both.

Anyhow I hope they find the reason for the kidney stones. He did tell me genetic testing was very expensive. I am afraid of this weight and how much I am holding on. I just want the nightmare to be over after all these years.

http://www.medscape.com/viewarticle/565417_3

PCOS: Stealing Femininity and Fertility

It makes you wonder if all toxins to the endocrine system are playing a part. I am glad this doctor admits the spectrum from severe, moderate and mild.

PCOS: The Greasy Smelly Disease

Can PCOS make you smell?

I am praying that Urocrit melted my kidney stone and I can go back on Spironolactone, did I smell like this years ago? Was I ever this greasy and oily? It feels like the stuff of madness. I am having to shower twice a day on days I want to socially function. I want my Spironolactone back!!!

Years ago a lot of my abuse had to do with being told I smelled, I would shower everyday, change clothes, wear deodorant and the problem got worse and worse. During my weight gain before my PCOS was diagnosed at one job, abusive coworkers told me I smelled constantly to the point I wanted to file a lawsuit and I was showering and doing everything I could. At the time I blamed it on badly cleaned water in the area I lived in, because I moved to my new town and the problem seemed to disappear, but that was the time the country doctor diagnosed me with PCOS and started me on Spironolactone. Was I this bad?

This is enough to give me a nervous breakdown because the Aspergers, fatness and deafness is enough social barriers. I feel so gross I am horrified, water and soap doesn't seem to penetrate the grease, I smell FUNNY. My hair is covered in oil just hours after a shower. My ears are flaking in greasy yellow flakes. I look and smell like I haven't showered for days when I did twice.

My friends tell me they can re-wear clothes, I can't, it has to freshly laundered and even then sometimes I will wear two outfits in one day. My husband says I make way too much laundry and it is expensive when you live in an apartment building. I have followed the never rewear clothes rule always.

My testosterone must be going sky-high, I am getting ugly again, and growing a mustache. I stink, my pheromones are changing. This is so extreme.

Cushing's Syndrome in Women With Polycystic Ovaries and Hyperandrogenism

 

Hair-An Syndrome

One of the Best Articles on PCOS I've Seen

PCOS: How Does It Affect Women?

As I detailed in my 400lb weight gain blog entry, I am diagnosed with PCOS, and also two other thyroid and endocrine conditions, mine is so bad, they considered adrenal tumors, and I do have high cortisol though one Cushings expert I consulted with considered that as coming from other factors including the severity of my PCOS.

I am glad this article, talks about how PCOS needs to be taken seriously as a life long illness not just a "mild" condition that interferes with fertility. In my case, at least three endocrinologists have told me I have PCOS in one of it's most severe forms and could have one of the worse cases in the country. My signs of the condition actually showed up with brown spots, even while I was near normal size by the age of 13 but I would not be diagnosed til age 30, after my severe weight gain. Endocrine and autoimmune diseases in general are in my family.

Psychologically, PCOS is a brutal condition.

In its most severe form, a woman is stripped of nearly everything that society sees as womanly, a "theft of womanhood," as some sources call it. She probably is very fat, balding, has a mustache or other facial hair, has acne and body tags, doesn't cycle regularly, and has difficulty having children. She is seen as sexually unattractive, epitomizes the image of the "ugly" woman in our society, and is the object of many jokes and much derision in the media. Is it any wonder some women find this condition incredibly demoralizing?

Adding into this is the lack of understanding around PCOS as a condition. Even when you have an official diagnosis, some friends and family consider it a dubious finding. In their view, you're just looking for an excuse for being fat, crying about how your "bad metabolism" causes your obesity, instead of taking responsibility for your supposedly poor eating. They roll their eyes or accuse you of closet binge-eating instead.

My periods had totally disappeared by age 19 unless I took a drug like birth control pills or Provera to force one.

I have to admit this part is very true. I know most except my husband, best friend, and relatives who have lived with me, do not believe me about my eating habits. Some of the better doctors admit my severe metabolic problems but information about PCOS is woefully limited even in the medical community:

Doctors often don't believe you if you tell them you eat normally either, thinking you must be in denial about your eating, or that you are too uneducated about "proper" nutrition to really understand how to eat healthy. Furthermore, the shopping cart and food intake of a woman with PCOS are under continuous scrutiny and criticism, adding constant stress to daily life. The "obese" woman with PCOS always feels on the defensive about her food or exercise habits.

This disbelief about their experiences and the burden of constant surveillance often takes a considerable toll on PCOS women's self-esteem. And for those who truly do struggle with eating disorders after years of dieting, the shame around dealing with that on top of PCOS can be overwhelming.

She goes on to talk about educating care providers and others about PCOS. Her summation is very important here. I would like to see that change too.

Because of its implications for long-term health, PCOS deserves to be taken seriously, regardless of the patient's age or whether or not they want children. It needs to be seen as a life-long condition, not just a concern tied to pregnancy.

I am going to print this article out when I get a chance. Please do read it.

Do You Have PCOS?

I'm putting this up for my readers, every now and then, I see a woman, that definitely looks like she has PCOS, and most do not know about this. I am diagnosed with PCOS, had the dark skin patches by adolescence and disappeared periods even way before I got very fat, and was told my case is one of the worse in the country, of course with me there is overlap with other endocrine problems.

If PCOS is caught early enough though life can be FAR BETTER. If you are young and see these symptons to get tested, ask your parents to help you if you still live at home. I had all the worse outcomes of this condition for literally years, before I got help, symptons by age 12, and not diagnosed until my early to mid 30s!

My Life As a Fat Teen #2

From seventh to tenth grade, I suffered a reverse invisibility. I wasn't deemed fat enough to warrant my previous diet of elementary school torture, but I wanted no one's attention, and did little to attract it and I still remained fat enough to be DIFFERENT from all the ultra-thin lithe girls around me. I rarely spoke and always sat in the back, as long as there wasn't a seating chart to ruin my best intentions.

I felt my residual bottled-up anger would take time do dissipate. Try delivering a speech before a class notorious for making earthquake noises as you'd walk up there: by eight grade, I'd take the F and stay in my seat.

Better yet, try walking onstage to collect an award for tackling the most books in the summer reading program, with the entire school jeering, and laughing at once: what you feel goes beyond all academic study. Like many teens, I was sensitive to the constant scrutiny, especially when I started high school. The halls would close in as I took stock of the jeering faces, pointing fingers, and whispered words. I'd seek refuse in the remote Science Hall bathroom, where I'd be guaranteed an hour of solitude reading a book.

Such disconnection suited me while sitting in the back with my nose in Stephen King's [books I cannot tolerate now] latest novel, having finished all my homework before the day ended. From there, I'd look forward to afternoons of television and never ending household chores from my perfectionist parents. When I turned 16, the endless grind of salad girldom and fast food work which did more to train me to be a future member of the impoverished working class, rather then learning any real job skills, at least gave me a bit of spending money. The music I listened to was rot as well, a headbangers ball, of AC/DC and Def Leppard, that would pave the way for even darker and worse music tastes by college with a little bit of Duran Duran to lighten things up.

Other times, I'd be riding my bike, or reading or collecting stickers which my sister with whom I shared a bedroom. I could handle being an outcast since I had two siblings only a year apart in age each and jobs that filled my time.

By mid-high school, I weighed in the low to mid 200s and stood almost 6 feet tall. Being so large and invisible had a price. I soon learned unlike the small private school where I went to elementary, I no longer even had the couple close friends to pass my time.

For openers we moved from a huge metro city, to a more medium town, where everyone had been born there, and been together in school from kindergarten on. My siblings still hung out with me but their company seemed to come more cheaply and dearly as my new "nerd" status reached greater heights.

One horrible joke in my high school would be the boys comparing girls to dogs as they walked down the hall. I didn't have an ugly face, but was fat enough to earn barks, as I walked to class. It didn't take a rock scientists that especially by the halcyon days of the 1980s, that looks were the female sex's hottest currency: instead of Harriet the Spy Adventures, I'd find myself overtaken by Sweet Valley High nightmares.

In late junior high school I approached one of my other "Fat" classmates only to have her yell: "Get away from me!". Years later, I'd see her red-haired, freckled face in a magazine, talking about those teenage battles with anorexia.

As a first hand witness to her constant teasing, I wasn't surprised but wondered "What was wrong with me"? I couldn't walk into a classroom without someone trying to trip me, or muttering "boom, boom" under their breath. I knew by then, something was very wrong with me, and dieting, exercising since I spent literal hours on my bike, walking, and at the restaurants working on my feet, that nothing was doing anything to touch it.

When my weight went up, my treatment would go down accordingly, as my bowling partner, Stephanie, demonstrated, she'd hang out with me at home but pretend not to know me at school, even though our parents were friends. My sociosexual development slowed to a crawl. I had no interest in makeup or dating and by then had equated all boys with teasing tormentors. Even at 13, I knew things were more dangerous for fat girls who were seen as easy pickings.

I can remember having a full figured friend of my mother at a family pool party, saying "You better lose weight, or you'll never get a boyfriend." The message came at a pool party, where I sat forlorn and vulnerable in my bathing suit, with my mother nodding in agreement, I slunk my 14 year old self into the bathroom where I cried for half an hour and wondered aloud why the boys seemed so interested in having girls be so bony?

Periods of lower weight did not cut me a break in the looks department. When that happened, I no longer was called "earthquake or Big Mama" but they would switch over to "Amazon!". I had far more hair then other girls, was larger, more muscular and had more oily skin. Being taller, more masculinzed and more aggressive, results of the high androgens racing through my body, it would take almost 15 years to find out why my body did not match those of other high school girls when I discovered the realities of severe polycystic ovarian syndrome along with other endocrine problems. Dirty brown spots starting popping up all over my body, my mother would tell me constantly to wash my neck, not realizing this was a sympton of the hormonal chaos taking over my body. Even as a teen, my periods permanently disappeared, and there was no help. By then I had thought "good riddance to bad rubbish", the doctors never did any tests. They'd just send me home and say Diet!

It is strange to look back, and think if only I had known.....