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.
Aug 15, 2014 @ 10:46:12
Hi Jessica, I have just read your post… How are you doing today? It’s been over a year but I would like to know if you have received a helpful diagnosis in the meantime.
I am interested because I have also been diagnosed with ADHD, depression, abdominal obesity; I also bruise very easily and my legs and arms are very weak. I get muscle pains from the most ridiculous things, and I am only 33 years old. No moon face and buffalo humo in my case, though, and my striae could well have been caused by the weight gain and nothing else. They aren’t red.
Did you have other tests related to Cushing other than the 24 h urine test?
They do not always come out accurately from what I have heard, and sometimes need to be repeated at a later date, or followed up by other tests (dexamethasone suppression test, corticotropin assays, corticotropin-releasing hormone stimulation test – whatever that is, really… I am not a doctor but that is what I read).
I hope you have received valuable help in the meantime.
May 30, 2020 @ 16:38:26
oh my god, I am the exact same way. They are just testing me now with cushings and while the first test did come back negative after I took the dextromorphisone pill the night before, they hadn’t tested my usual levels. So an internest tested my levels without the dextromorpbisone pill and it did come back higher than normal. I have all your symptoms, even the throat clearing problem! I have a dark spot over my lip (I’m really pale too so it’s very obvious). I get unbearable pain in my thighs, hips, back, arms, and am extremely low on breath for no reason. I had my cortisol tests done both with and without dextromethasone the night before, you need to to demand to see an endocrinologist, I think.
I’m still waiting fof my ACTH blood results to come back too. But I feel your pain. It’s like being alive but not actually living. Send me an email whenever you want – meen.steph@gmail.com