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Dawn M (Lind8588), Steroid Induced Bio

October 19, 2025

MaryO Steroid-Induced , , , , , , , , , , , , 3 Comments

I have suffered from severe asthma and environmental allergies since I was a young child.  They used steroids as a way to help me breathe and stop hives.

As I got older, things just got worse.  More steroids, more allergy medications, etc.

Two years ago I started losing energy, lacking the urge to eat, having daily headaches, gaining weight even with exercise and sleeping a lot.  I thought it was stress as I was finishing my doctoral degree.  My regular doctor tried everything.

Finally, she sent me to Mayo in Minnesota and they diagnosed me with exogenous Cushing’s.  I had the buffalo hump, striae and moon face.  They did not give me any medications but told me to stop taking steroids.  Also, they found that my Vitamin D was a 9 so they loaded my Vitamin D.  I slowly started to feel better for the first six months.  I now seem to be going back downhill.  I am exhausted all the time.  I have no idea where to turn.  I am starting here and also looking for a local endocrinologist, otherwise I may return to Mayo.

 

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Michelle, Adrenal Bio

September 26, 2025

MaryO Adrenal, Diabetes, Golden Oldies, Other Diagnosis , , , , , , , , , , 1 Comment

A Golden Oldie

I am 37  years old and was recently diagnosed with Cushing within the last month.

adrenal_glandsIn 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body.  I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.

It has been a very long process to get to the Cushings diagnosis. Prior to all of this I did not have any serious health problems, I was a litigation attorney, every day I was in court running around with no health problems. I am hoping that I am on the road to recovery since I have been finally diagnosed.

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Voices from the Past: Kristin T, Undiagnosed Bio

August 21, 2025

MaryO Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , 3 Comments

undiagnosed4

Currently undiagnosed but I am a medical professional, and not stupid.

All through my adulthood (age 21ish to now at 43) I have had the following symptoms: B12 deficiency, Vitamin D deficiency, the depression/anxiety/irritability, major loss of emotional control (I can cry at the drop of a hat, sometimes in very inappropriate situations (like at work).

I can gain weight like no tomorrow (60 pounds over about 8 months. The only way I’ve been able to lose it is either gastric bypass (which created a whole other set of issues and had to be reversed) or an entire month on IV nutrition (TPN), in short abject starvation.

I have stretch marks all over the place, a fat abdomen (in spite of a tummy tuck), fat upper arms, fat thighs, back fat (oh yes, the ubiquitous hump between my shoulders and fat pads above my clavicles). I am weak to the point that a two mile walk has me in bed for the rest of the day. Forget working out, I drop from exhaustion. my back hurts, I have horrendous posture and get muscle spasms and a backache when I try to remind myself to stand up straight. I am always thirsty, and subsequently pee nonstop, I have a seemingly insatiable appetite usually for carby type stuff (although I really try to pay attention to what I eat).

I’m a total klutz and oh yes, the crowning glory: I have hair on my inner thighs, heavy hair on my lower arms and I can win a beard growing contest with a bunch of guys, although testosterone levels have been tested and are unremarkable. I’ve got a bit of hypertension (although also a little decreased kidney function, which may explain that.) I had a total hysterectomy for the heavy bleeding and constant ovarian cysts (but not the string of pearls pattern indicative of PCOS. Libido?, yeah right. I have the sex life of a nun and am frankly not interested. This is not genetic because I am the only one in my family that is like this.

Over the years I have been diagnosed with PCOS, major depressive disorder, and more recently some kind of unspecified eating disorder (apparently just because I’m fat). I have been treated as such over the years with totally no change. Birth control pills just made me bitchy, the cocktail of antidepressants seem to help minimally (I can still cry over nothing), and this is now having a huge impact on my professional life (like nearly destroying my career).

If all this crap isn’t a good reason to at the very least, look at Cushing’s, then I don’t know what is. Incidentally I had a doctor, some 13 years ago start the workup for this (had 24 hour urine, dexamethasone suppression test and a brain MRI) but this was pre-nursing school and I did not realize the seriousness of what he was suspecting, so I never followed up.

I finally have a primary care doctor who has immediately referred my to an endocrinologist. I appointment in 2 weeks and well…to be continued….

Updated January 9, 2016

still searching for a doctor who gives a ***. I’m quite peeved. It’s been a while since I updated because, well, just busy.

I went to the appointment and the doc pretty much just blew me off. i said that in my opinion, it was worth at least running the tests. I could be wrong but please humor me and run them. Well, he sent me off to the lab and all he did was a one-time single cortisol level. It was normal. His diagnosis, “weight gain due to excess calories” and recommended a medication that costs $1200 per month and was NOT covered by my insurance!!!!! Seriously????? Jerk!! I came into some money, so I ponied up for 2 months worth of the medicine and thus far I’ve lost 12 pounds and now I am plateaued. My new insurance covers it, so i’ll keep at it, but I’m finding a new doc. How hard is it to just run the bloody tests!!!

Have to go now, it’s time to shave the hair on my chin and go to my therapy session for depression. Someday, maybe someone will believe me, hopefully before I die!!!!!

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Voices from the Past: Patty L (Answer hungry), Undiagnosed Bio

July 10, 2025

MaryO Hypothyroidism, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Stephanie (Steph), Undiagnosed Bio

April 16, 2015

MaryO BlogTalkRadio, Interview, Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , 3 Comments

undiagnosed2

Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

interview

Stephanie was our guest in an interview on BlogTalk Radio  Wednesday, April 29 at 6:00 PM eastern.

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 82 other past interviews to listen to!

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Mary (TheGoat), Pituitary Bio

May 4, 2013

MaryO Adrenal Insufficiency, Adrenal Surgery, Diabetes, Pituitary, Treatments , , , , , , , , , , , , , , , Leave a comment

I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.

They said that did not cure the cushings so I had a BLA in 2004.

I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods,  vitamin d deficiency, and other strange things.

They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.

Jessica (JessicaAnn), Undiagnosed Bio

May 4, 2013

MaryO Hypothyroidism, Insulin Resistance, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

I’ve been struggling with a lot of health issues for a really long time now, and so far I have been diagnosed with multiple different things only to have the next doctor say the previous one was wrong.  None of them have yet to be able to explain why I am physically in pain over stupidly simple things like doing laundry, cooking, cleaning, etc.

I recently got tested for Cushing’s because my current doctor thought that might be it, and I was certain I did as well based on how much it sounded like me.  However, my 24 hour urine test came back normal.  So now I’m back to where I started, with no answers and losing hope that I’ll ever find out what’s wrong with me.

 

I have previously been diagnosed with the following:

ADHD – 2005

Insulin Resistence – 2005 (later told that was incorrect)

Depression – 2005 (though it started long before then)

Migraines – 2010 (they started when I was in high school, though, so roughly 2001)

Hypothyroidism – 2010 (I was laster told my thyroid looked fine, though I’m on Synthroid)

PCOS – 2011

Fibrocystic Breasts – 2012 (No tests were done, and I’m fairly certain this is incorrect)

Vitamin D Deficiency – 2012

Vitamin B-12 Deficiency – 2012 (probably caused by spironalactone since it apparently causes that)

 

Both the PCOS and Fibrocystic Breasts diagnoses were made without the presence of cysts, though my ovaries are enlarged.

 

My symptoms have included:

 

Headaches

Migraines

Irregular Periods

Severe Menstrual Cramps

Severe Acne

Oily Skin

Heavy Periods

Fatigue

Difficulty falling asleep (I average about 3 hours per night)

Difficulty staying asleep

Weight Gain (started when I was doing 30 minutes of cardio + 30 minutes of weights every day plus watched everything I ate.  I still to crossfit several times a week and watch what I eat)

Hair Growth (upper lip, stomach, neck, chin)

Nipple Discharge

Skin discoloration (neck, under arms, under breasts, elbows, inner thighs)

High Blood Pressure

Fast Heart Rate

Constant Phlegm in my throat (has been there for years and never gets better/only gets worse when I get the flu)

Hoarse by the end of the day/night

Deepened Voice

Difficulty Concentrating

Forgetful

Large Pink Stretch Marks on waist

Lack of period (started about a year ago)

Back pain from doing simple things (has progressively gotten worse/included my hips, neck, and left shoulder)

Nosebleeds for seemingly no reason (most often in the bath tub/shower, sometimes just happens while driving, walking, doing nothing that should cause them)

Depression

Loss of appetite (I usually force myself to eat light meals at work just in case I end up hungry at some stupid time like 4:00 PM)

Nausea (literally almost every day)

Diarrhea (usually after eating)

Often Stressed Out

Irritability

Buffalo Hump

Round face (I actually have pictures of me when I weighed less than in previous ones, but my face was horrible round in the ones where I weighed less)

 

More than anything, I care about getting the back pain, migraines, and sleep issues fixed because that’s what affects my life the most.  One thing I noticed with the exercise is I’ve been able to build muscle in my legs and arms, but there’s been no change to my stomach, and I have dropped no weight/inches off of any of my body (since I know muscle will add pounds).  I have been to numerous doctors, including several Endocrinologists, one internest, a rheumatologist, a breast specialist, and several gynocologists to get things fixed.  All of my symptoms have progressively gotten worse over the years, and I’m just worried with the amount of pain I’m end that I’m one day not even going to be able to walk.  I’m at peace that whatever it is could eventually kill me, but I at least want to know why it’s happening before it does.

 

So far the only lab work I’ve gotten that showed anything was my Vitamin D and B-12 levels were low, and my Testosterone was high.  My doctor said this would not cause the back pain, though.  I just don’t understand how I can have all of these issues at 28 years old to constantly be told there’s nothing wrong with me to cause the back pain.  I have had no trauma that would have caused it (like a wreck or something), so I know this isn’t normal.

 

If anyone has any suggestions on any other tests I can do/possible causes, I would be extremely grateful.

 

Thank you for taking the time to read this.