And It's About Time There Was Some Support For Cushing's!
Hello, I'm from Hampton, just outside London. Same old story - at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)
I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone's put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I'll post some photos later.
So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source - but the pituitary MRI was clear. I'm waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.
In the meantime, I'm frustrated and feeling lousy and v tired. I have to work full time (luckily I'm an accountant, not something overly physical) as I'm a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!
Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair's a mess and I don't eat out much! I veer about - someone at work told my boss I couldn't walk in a straight line! Highly amusing as I haven't touched a drop in ages!
Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult - can't get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.
As so many of the symptoms are intermittent, the endo says he is convinced it is cushing's, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I'm not particularly religious but i pray he won't give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.
Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive - I'm surprised my mood swings haven't frightened them all off lately. It's so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).
Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels - and have felt it for umpteen years too.
All the best.
Liz
Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma - a red herring!
It's a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you're out there(!), don't give up!!
Wish me luck ...
We learned that Liz died in March 2012 at the age of 45. Read Liz's In Memory Page.
