October 31, 2018 at 11:38 am #6514
Hi, I’m new here, and relatively new to Cushing’s. I was referred to an endocrinologist a month ago because she wanted to test my cortisol levels. I read up on what cortisol was, and I discovered that I have 27 symptoms of Cushing’s, and that I’ve probably had it for 32 years (since I was 10 years old, when I was hit by a bus at 30 miles an hour, and I got a fractured skull). The reason I think it’s been 32 years is because the photographs show that my body dramatically changed directly after the accident, and that’s when the first physical symptoms appeared. About 10 years ago, the pill made my symptoms worse, and that’s when I began visiting the doctor a lot and seeing some rather horrifying symptoms that made me think I was dying (and some rather horrifying doctors who didn’t seem to care). So that’s my story so far. But I haven’t had my cortisol tested yet, and I’m on a four-month waiting list to see an endocrinologist, which from what I gather does not guarantee any tests at all. I’m a bit concerned with how long it’s going to take to see the guy who can approve the tests. If it’s four months to get a test approved, how long do you have to wait to get an operation? I’m in the UK, so maybe it’s an NHS issue. I’m very much in the frame of mind that I refuse to die while waiting in a queue. I can’t fathom why the wait is that long. If the disease is that rare, then surely there aren’t that many people waiting for an appointment? I mean, most of the UK specialists have only studied Cushing’s in dogs rather than people. Am I in the queue behind the dogs then? This long wait is odd, and I’m highly suspicious of it being some kind of budgeting thing (it’s cheaper if I’m dead). I’m a bit morbid sometimes… Anyway, it’s nice to meet you all. I guess I just wait…?October 31, 2018 at 11:53 am #6534
I’m not in the UK but I do know that a lot of patients report having to wait quite awhile to get in to see an endocrinologist. There could be a lot of reasons for that, which doesn’t make it any easier on the patient!
Did you speak with your primary doctor about ordering a cortisol test? Again, I’m unsure of the difference between the US and UK, but here a primary doctor can order a hormone panel that would show a bigger endocrine picture and potentially areas to look more closely at. It’s unfortunate that endocrine problems are so non-specific while also being very difficult to live with. Perhaps if your primary can’t do this, your gynecologist could? Many Cushing’s symptoms mirror PCOS symptoms so at the very least it could be a basis to request a full hormone blood panel to look at that but also cortisol.
It will be nice if the human diagnostic and treatment process can one day become as “simple” as the animal ones seem to be, but all the things that make us human create a much more complex set of issues than vets face when making that diagnosis. Something you can do to maximize your time when you do get in with the endocrinologist or other doctor who will be testing you would be to create a small file or set of documents with a timeline of your symptoms and pictures. This is where the concept of an “elevator speech” comes in beautifully – if you present a doctor with a 10 page single-spaced description of every symptom and when it started, it will be too much. If you’ve looked into other potential causes of hypercortisolism (sleep apnea, lifestyle, etc.), it can be helpful to state that you have ruled them out (maybe include a week’s worth of food diary, as an example) so you’re not sent away to do those exact things.
Do you have independent labs there where you can order your own testing? We have them here, you pay cash but you can order any test you want. I wonder if you were able to establish a test-backed suspicion of hypercortisolism if that might speed up your appointment?
Good luck!! I hope you get answers soon.November 9, 2018 at 4:41 pm #6543
I’m not sure how it works in the UK, but do you get to choose your doctor and did you call multiple places? Do you have to be referred to a specialist? I started calling endocrinologists yesterday and just had my appointment today, but it was the third place I called and I don’t need referrals to see specialists. The first wasn’t taking new patients and the second was scheduling out to January. If possible, call more doctors and try to get an appointment that’s sooner. Also, maybe look outside of your immediate area. Again, not sure if my advice applies to you. Either way, good luck!
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