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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