At a loss

Sorry Jazzy that your doctor hasnt had enough training in this area. Maybe if you print off some info and take it with you. Darn your in the UK now. Hmmm well its probably a good thing. Cant you see any GP in the UK? A 24 hr urine is definitely not 3 morning urines. Its ALL the urine you do with in a 24 hr period. If you have 2 high cortisols and a high ACTH ( which would have been done the same time as the cortisol ), then you have enough to move on from a GP and see an Endocrinologist. Honestly, the best way to get things moving is to end up in hospital with some ailment, mention your cortisol and ACTH levels have been high....they do a full range of tests over 4 or 5 days. For example i had generalised body aches and pains, could barely move. I told the emergency department i thought my cortisol had dropped, next thing i know i have the endocrinology team there. They admitted me for testing, Bloods, Urine, Saliva, 24hr urine for three days in a row continuious, Dexamethazone suppression test full work up. So if you catch a cold or any old illness, present to ED and tell them you think your cortisol levels are playing up ( again ).

I wish you the best of luck

 

Yeah he obviously didnt understand what the endo was telling him. Ive had a trainee endo once, didnt know much and didnt really care. Was so bad i told him so. I'm just lucky I'm a nurse and i know when they are Bull S@#$ing me

Absolutely.

I would write that your GP conducted what he said was a 24hr Urinary free cortisol and advised you to collect an early morning urine sample for each day for three days. I would just like to confirm with you that this is the correct method as people i speak to state that a 24hr Urinary free cortisol is conducted by discarding the first early morning urine and then collecting ALL urine for the next 24 hrs. I just want to be sure that the correct test is been collected as i have already had 2 high morning Blood Cortisol results and my ACTH was also tested as high. Thank you for your time and understanding. I look forward to your reply..... your name

Thats what i would write.

yes. print it off and take it with you

Well done on getting a fast response

 

Here is a site you may find very helpful:

https://labtestsonline.org/understanding/analytes/cortisol/tab/sample/

I'm from across the pond so I know only anectodal info about the UK health system, but it sounds fairly frustrating at times like large HMOs in the US. One thing that seems to get success within the UK is being the squeaky worm, so don't give up and if you have to escalate, escalate.  Surely if you have problems there, you must have an advocate system of some sort you could contact?

Cushings is a very hard disease to diagnosis..my husband is classic...finally got him to see an endo who agreed...what happens?  The lab blows the test because they didn't know how to do the new saliva swab....arrgh.  Best of luck!

I also forgot there is an extra rare type of Cushings called food dependent Cushings that does not show it self with the standard protocol testing for Cushings. The testing must be done along with meals and food.  Any doctor or patient can search PubMed from the US National Library of Medicine National Institutes of Health for the latest research, along with contacting the primary authors if they have questions.