I’ve had my referral come through for the endocrinologist; 18th September. It seems an age away. In the meantime I’m still waiting on the results for previous tests I’ve had. I spoke to my GP this week as she’d obviously thought the urine tests would be back but they’re not unfortunately so I’m waiting until 20th August when I’m popping in to see her. I’ve read up a few things online about the tests that can be done and none of them seem to be particularly reliable so I’ve also requested further tests in the meantime so that I can be ahead of the game when I finally get to the endocrinologist.
The tests for Cushing’s seem to be the following:
24 hour urinary free-cortisol test: I’ve done one and have another waiting to go this week. I believe normal would have little to no cortisol in it, if I have an excess in my body it gets filtered into the urine. From what I’ve read they are often false positive and 3 or more can often be needed for any conclusive result. The second definitely won’t be back by the time I see my GP but hopefully will be before the endocrinologist.
ACTH blood test: This was the first test I did and a couple of things came back slightly elevated but not high enough to be conclusive.
9am blood test: I’m going in for one of these this week; there are apparently times that your cortisol either spikes or drops and this is one of them. I’m also thinking this will be a good opportunity to show that I’m bruising easily and healing slowly as I’ll have a date I can say I had the test done, hopefully once again it will be an easy blood test so when it bruises up massively I can take pictures to say it shouldn’t have been that bad and can continue to take pictures to show how long it takes to fade.
Late night salivary cortisol: I haven’t been given one of these yet but apparently your cortisol level should drop just after we go to sleep. It won’t if you have Cushing’s.
Those are the outpatient tests that I’m aware of, there are a couple that you have to stay in hospital for as well which involve blood tests and injections at certain times so fingers crossed I won’t have to go for any of those. This isn’t even the be all and end all as even if these confirm Cushing’s you then have to have MRI’s and possibly CT scans to determine if it’s a tumour causing it and if so, where that tumour is. And if it’s on the pituatary gland as most of them are, they are often so small they don’t even show up on the MRI.
Like with my DVT I’ve joined a couple of online support groups as I find this helps massively to take the mystery and scariness out of these things. It’s also nice as I’ve found a UK specific one so they’ve been able to recommend good doctors and hospitals that I can request to be referred to and give a rough idea of time frames as well, as I am of course at the mercy of the overrun NHS rather than paying out privately (which isn’t always much faster!) The groups have recommended I get copies of all my test results too so I’ll be doing that as if I do go between a few doctors it’s always good to have those on hand just in case your records don’t follow or they don’t check all the results. Hard to ignore them if I’m waving a paper version in their face. I’m also keeping a daily journal of what symptoms I’m suffering from and have a ‘master book’ where I’m recording all persistant and fluctuating symptoms, keeping a note of any questions I want to ask and will write down everything when I’m in appointments; partially because my memory is so terrible and partially just to ensure I understand what is said.
On with the adventure!