Day 22: But who's keeping score?

But who's keeping score?


One of the suggested topic from the Cushing's website is to write about what we've gone through to try to be cured. I am not going to write about my long journey to a diagnosis again which you can read by clicking HERE if you want, however I will summarise all of the tests and interventions I've had so far (and that I can remember).

2009:

• 2 x "regular" blood draws to check cortisol levels
• 2 x 24hr Urinary Free Cortisol collection (collect all urine being passed for 24hrs)
• Low dose Dexamethasone suppression test (take dexamethasone doses and then have blood drawn at 8am)
• *edit* I forgot to mention that I also had a CT done of my kidneys

2010:

• High dose Dexamethasone suppression test (take dexamethasone doses and have blood drawn every morning at 8am over 2 days)
• 3 x MRIs, two without contrast and one with contrast (meaning having dye injected into the veins)
• 2 x 8am fasting glucose blood tests 
• 8 (maybe more) blood draws to check cortisol and other hormone levels
• Transphenoidal surgery (to remove the tumour)

2011:

• Low dose Dexamethasone suppression test
• 3 x 24hr UFC (urine collection)
• Bone density scan
• 1 blood draw to check baseline hormone levels

2012 (so far):

• 1 x 8am fasting blood glucose and cortisol level check
• 3 x 24hr UFC (urine collection)
• Low dose dexamethasone suppression test
• 1 x MRI

All I can say is WOW!!!! And considering I started testing in September 2009 and we're only in April 2012, I can't even imagine the countless amounts of interventions those who are testing for several years go through. I'd also like to point out that I have not included in this list all of the blood tests I did before when they suspected everything from PCOS to Thyroid issues.

No wonder I hate needles now and when I get to the blood draw clinic, if I see the nurse wearing a TRAINEE badge, I ask to change. Let someone else be a pin cushion for once...

Tomorrow's post: MEDS!