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Cathy L (CathyL), Pituitary Bio

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I am 55 years old and my symptoms began long ago I believe.  I have had my tumor out and have not had any recurrance since 2009 when I had it out but unfortunately am still a little paranoid (to the extent that I will spend $100 on a saliva test once or twice a year) when I have any symptoms.

1998 out of the blue started having heart palpatations at night ( endocrinologist still insists that was not part of it but it stopped when my tumor was removed!!!(So far have yet to find an endocrinologist that I love…very narrow minded and refuse to admit how little they really know about Cushings).

2003 started Natural Progesterone cream due to fibrocystic breasts and low libido & just general breast cancer prevention.  No MD ever had a problem with that.

2005 – 1st saliva test just personal curiosity about hormone levels.

2006 started feeling lump in my throat when swallowing so went to ENT —found nothing out of the ordinary (with 20/20 hindsight suspect it was the supraclavicular swelling starting internally.

2007 upper GI just to be sure nothing in my throat per ENT referral–found nothing.

2007 starting to show supraclavicular fat pads 2 MDs & 2 surgeons seen for those & none of them picked up on the Cushings from that. Also had complained to my OBGYN @ the sensation of my uterus dropping out of my vagina — he saw no physical reason for this sensation but with cental obesity getting slowly worse (155 compared to my normal 135 lbs) i suspect there was downward pressure esp when walking & standing for long periods of time.

Finally in 2008 one of my MD patients suggested Cushings & BINGO everybody suddenly saw the light.  Abdominal CTs showed no adrenal problems MRI showed 5mm microadenoma (well circumscribed) .

My brother in law is a neuro-surgeon & in our area if you ever have anything weird going on you go to Duke but he said in this particular area you want UVA (a “Pituitary Center of Excellence”).  Dr. Ed Oldfield took out my tumor & so far so good.  I had to supplement cortisal at first but within 6 months I was off it & my body was making its own.  I feel that I was very lucky.  They say that the majority of MDs go thru their entire career without seeing a case of Cushings (OR knowing that’s what they are looking at). I would definately recommend not just letting any Joe-Blow neurosurgeon do your surgery – the more they have done the more likely the success.

I’m sorry this IS an update of my just submitted bio & I don’t know what my URL link is.   But I do feel that the 4 time cortisol saliva test was how mine was diagnosed because my morning cortisol which is all the MDs ever wanted to take was never off the charts IT WAS MY PM CORTISOL that gave it away.  Then total urinary cortisol measurement.  Sorry but I thought this was an important addition.  Yayy saliva testing!!!

Contact Cathy Leigh, DDS here.

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Jessica (JessicaAnn), Undiagnosed Bio

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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.

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