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Guest Sara

It's PCOS, but is it cushings?!?!

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Guest Sara

Hi everyone! My name is Sara and I'm 26 years old. I know y'all aren't doctors and everyone comes here asking "is it cushings" and y'all can't answer that question.....I'm just confused and need help.

I can't put a finger on the exact onset of my symptoms... in my early teens I had insomnia and missed allot of school because of it. Some depression issues and some weight gain, joint pain and social anxiety. All of which could be explained by puberty and growing pains. Ive dealt with feeling tired all the time for as long as I can remember but was still very active... drill team softball and gymnastics were my life. I had my first child at twenty and put on 40lbs during pregnancy and another 15-20 post pregnancy, fatigue and depression. Again, not really a big deal and goes along with "newborn exhaustian" and the baby blues. Second baby I was 193ish and lost 11lbs during pregnancy and had some high BP issues during the last trimester(weight was 191 pre-delivery 178 immediately post). I had very bad post partum depression with her...on the verge of PP psychosis. I got through it for the most part, and continued to drop weight...chalking it up to breast feeding and what not, but my face was still very round andmy neck and upper back were thicker than the rest of me (now that I've been looking back on it). Again all goes along with having a baby and hormones out of whack.

Spring of 11 is when things got weird. I started a new job and was buying all new business casual. All in a size 10/12 because of what I thought was my post baby mom belly. My hips legs and butt were an 8 easily... I remember being on the scale that week to weigh in with my PT 158. Over the next couple of weeks I put on about 8lbs...OK new job marriage issues..WHATEVER it's 8lbs right? Then a friend of mine/co-worker was talking to me and started staring at my chest...then reached out and plucked a long black hair. It freaked me out so I started looking for more and there were 6! I blew it off.....over the next few weeks I put on 14lbs. 6 one week 3 the next and 5 over the next week and a half...I started getting more tired than usual...and had diahrea on and off for no reason. I started getting hot flashes and acne. By august I was in a size 16 and 197lbs. I have the mirena so the fact that I hadn't had a period since march wasn't a big deal...I thought....All of this and I still thought it was just from the stress of a new hecktic job, seperating from my husband and raising 2 kids on my own....September I ended up in the psych emergency room due to suicidal ideation...I was going through allot right?

January of this year the scale read 203 I decided to step up the work outs. a new carb cycling clean diet and playing softball again. By april I had lost only 3lbs and1/4 inch on my waist. I was shaving my blonde beard daily, plucking my chest hair weekly, waking up smelling like a gymbag soaked in sweat and on antibiotics for the abscesses I kept getting on my belly and thighs....IT WAS TIME.

I went to my pcp and explained what was going on and he said "sounds like pcos, ill test your testosterone levels and we'll go from there". At my follow up I was very sick, so he decided to scan my sinuses and chest. I had a severe sinus infection and walking pneumonia from the cold my daughter had 3 weeks prior (this was june btw) When I asked about my lab work, he replied "oh it's fine...I think I know what's going on here so we're just gonna get that weight off you with this pill the FDA is approving in july" REALLY?!?!

I went to my yearly gyno appointment the next week and told him about everything that was going on "well this is why a PCP doen't diagnose gynecologic issues" haha okay....so he did more labs and a sono of my ovaries. Follow up appointment. "Well it's PCOS. Your TSH and LH levels are off and you're complaining of the pcos symptoms" I said "okay what about the sono?" "well your ovaries are prestine" UUUUUHHHHH WHAAA???So I take my estrogen perscription home and thats that.... One of the residents I used to work with saw me in the hall at work one day and stopped to talk to me. He asked "how have you been feeling?" in that famous doctor tone.....LOL so I spilled. He said "Ive noticed that youve put on allot of weight but what worries me is the places that it's accumulating" He started pointing out the fact that I pretty much was a fat head on shoulder s and I had a hump on my back at the base of my neck....and the fact that my belly hung over my scrub pants...(it didn't help that this is the resident that we all are googoo over) This is when I heard the word CUSHINGS.....I ran home did some searching and here I am....

Weight gain

Cystic acne

chest hair

belly hair

facial hair

excessive sweating

hot flashes

round face

fatty hump above the shoulder blades

fat around the neck

skin infections

arms get tired from holding a cup of coffee or brushing my hair

elevated blood pressure that started pre-weight gain (not high enough for meds)

anxiety

depression

tired all the time cant fall asleep at night but could sleep all day once asleep

forgetful/spacey

pain in the feet knees and lower back

restlessleg at night

skin on my arms very dry

face always looks flushed

my fingers are swollen nuckles are white and feels tight

TSH/LH levels abnormal but no cysts on ovaries

 

 

Am I paranoid? PCOS doesn't seem right and he couldn't explain why i didn't have any sign of polycistic ovaries but i had policystic ovaries...???and now my friend the "baby doctor" has me wondering about this rare condition/disease cushings...HELP!

 

sorry this was song long...

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Glad you found us, but sorry you had to find us!

 

You are right to consider Cushing's. PCOS and Syndrome X mimic many symptoms of Cushing's but just like any syndrome, it's a catch-all phrase and needs to be investigated and ruled out before a final diagnosis is to be done.

 

It sounds like you have an ally with this doctor who saw you in the hall. I would ask him who he would refer you to that would be able to help you. Finding a good endocrinologist willing to diagnose Cushing's or rule it out completely is half the battle.

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Or is it both?

Welcome Sara. I hope you will join us. You will find a lot of information on these boards. It will help you make educated decisions about your health care. Read as much as you can.

What were your testosterone levels? Did they do a vaginal ultra sound?

Know that taking estrogen will skew any test results for Cushing's

Good luck,

Pat

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Thanks so much for the replies! My testosterone levels came back "normal" according to both docs, but I never asked the exact level. I tend to let my doctors drive my health care (being a nursing student and ER tech I should know better). They did a vaginal and abdominal sono.... ovaries were of normal size and no sign of cysts.

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Hi SaraBear

 

Be sure to obtain a copy of every test that you do. It helps to see a pattern emerging.

 

This disease takes lots of testing and more testing. Best to get to a good endo early on in the game. A doctor that will allow you to test.

 

So many doctors will dismiss you. It takes your time and energy begging for tests.

 

Tests reveal telling results. Given your symptoms looks like Cushing's.

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